Sorry to keep bugging everyone, but . . . Breast cancer treatment?

[Jenny in Florida]

I'm trying to stay chill about this. And, I mean, I'm functioning. I'm going to work and (mostly) being productive. I'm doing the laundry and walking the dog and keeping up with social obligations. 

But underneath, there's this constant thrum of "what's next . . . what if . . . does that pain mean anything?"

I have my first appointment with the surgeon on Monday morning. I just got the referral for the oncologist in today's mail and will be calling bright and early Monday to make an appointment there, too.

While I'm waiting, though, I would sure appreciate it if anyone who has already been down this road and feels comfortable doing so would tell me a little about your treatment. What was your first post-biopsy visit with the surgeon or specialist like? Is there anything I should have handy? How long was it from the time you were diagnosed until you began actual treatment, and what was the first step?

I'm sure you all know better than I do what you might have wanted to know when you were where I am now?

And, as always, thank you so much for your patience and generosity in responding to my pleas!

Edited August 2, 2019 by Jenny in Florida

[Lawyer&Mom]

Nothing to apologize about!  You aren’t bugging anyone!

[Arcadia]

My thread https://forums.welltrainedmind.com/topic/683315-breast-cancer-diagnosis-2nd-opinion-updated-29th-july/

(ETA: don’t know why the thread link doesn’t automatically go to the first post)

Any questions you have just post here or PM me.  I’m fine with either choice.

ETA:

Best would be if you could take someone along for the consultations with the oncology surgeon and the oncologist. My husband helped listen and ask questions.

If they have an online health record system, opt for that as it is a great help for me to be able to read all my visit notes online (and I can download) as well as have all my test results online (downloadable as well).

Edited August 2, 2019 by Arcadia

[Scarlett]

My understanding is that protocol is determined by what type of cancer, how big, what stage.  Some people have surgery first, some people have chemo first.  

It is very curious that your fall brought that lump to your attention.  My mom's was found by a GP when she asked him about a little skin tag on her breast.  He said 'that is nothing, but this lump is.'  It was not  a mammogram that found my mom's.

[Jenny in Florida]

7 minutes ago, Arcadia said:

My thread https://forums.welltrainedmind.com/topic/683315-breast-cancer-diagnosis-2nd-opinion-updated-29th-july/

(ETA: don’t know why the thread link doesn’t automatically go to the first post)

Any questions you have just post here or PM me.  I’m fine with either choice.

ETA:

Best would be if you could take someone along for the consultations with the oncology surgeon and the oncologist. My husband helped listen and ask questions.

If they have an online health record system, opt for that as it is a great help for me to be able to read all my visit notes online (and I can download) as well as have all my test results online (downloadable as well).

 

Thank you!

I was browsing your thread the other day, but I was on my phone. I made myself a mental note to go back and read more carefully, then promptly lost that note somewhere in my scattered mental processes.

I had been intending to go by myself to my first couple of appointments, so that I don't burn through goodwill from my husband's employer too early in the process by having him take off a ton of time right away. However, he has expressed a desire to go with me and be involved. So, I think he will be going with me on Monday.

Our health system does have a patient portal, through which I can access my records. It's painstakingly slow and, since they recently "upgraded" the system, downright buggy. But, on a good day, it is useful. I got online the other day and made notes about everything I thought might be important to have at my fingertips.

[Arcadia]

If you are not “freak out” by reading (I’m not) then this webpage and the links on the webpage  gives a good overview of the jargon the oncologist and oncology surgeon might use. https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/types-of-breast-cancer.html

In my case, the lump is large so the oncologist determines the treatment regime to shrink the lump so that I could have a lumpectomy instead of a mastectomy. For small lumps, the oncology surgeon would likely do a lumpectomy first before a treatment regime is decided depending on the pathology report following the lumpectomy. So the treatment sequence does depend somewhat on size of lump.

[Jenny in Florida]

9 minutes ago, Scarlett said:

My understanding is that protocol is determined by what type of cancer, how big, what stage.  Some people have surgery first, some people have chemo first.  

It is very curious that your fall brought that lump to your attention.  My mom's was found by a GP when she asked him about a little skin tag on her breast.  He said 'that is nothing, but this lump is.'  It was not  a mammogram that found my mom's.

 

I'm still wondering if maybe the lump I'm feeling/seeing is a combination of the underlying malignancy and some bruising/swelling caused by the impact?

[LMD]

My sister had a lumpectomy within about... 10? days from diagnosis, definitely less than 2 weeks. It was an aggressive, fast growing one and she was only 29 so they got her in quickly. She then went through 6 rounds of chemotherapy and then 6 months of radiotherapy. 

Sorry you're going through this Jenny.

[Jenny in Florida]

3 minutes ago, Arcadia said:

If you are not “freak out” by reading (I’m not) then this webpage and the links on the webpage  gives a good overview of the jargon the oncologist and oncology surgeon might use. https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/types-of-breast-cancer.html

In my case, the lump is large so the oncologist determines the treatment regime to shrink the lump so that I could have a lumpectomy instead of a mastectomy. For small lumps, the oncology surgeon would likely do a lumpectomy first before a treatment regime is decided depending on the pathology report following the lumpectomy. So the treatment sequence does depend somewhat on size of lump.

 

I've looked at that website, actually (along with a crap-ton of others).

I tend to get more nervous and freak-out-ish when I have less information than when I have more. My knee-jerk reaction when something happens is to go into research mode. There's really no such thing as too much information, as far as I'm concerned.

I keep trying to match up what I know so far with the descriptions on these various sites. Sigh.

I'm sure I'll feel better -- even if the news isn't good -- after meeting with the surgeon on Monday, but I suspect it's going to be an emotional roller coaster of a weekend.

[Jenny in Florida]

4 minutes ago, LMD said:

My sister had a lumpectomy within about... 10? days from diagnosis, definitely less than 2 weeks. It was an aggressive, fast growing one and she was only 29 so they got her in quickly. She then went through 6 rounds of chemotherapy and then 6 months of radiotherapy. 

Sorry you're going through this Jenny.

 

Wow, that is young! I'm sorry she had to go through it, but glad they took care of her well and quickly.

[Arcadia]

8 minutes ago, Jenny in Florida said:

 

I'm still wondering if maybe the lump I'm feeling/seeing is a combination of the underlying malignancy and some bruising/swelling caused by the impact?

 

The oncology surgeon and the oncologist would be able to answer your question on that based on the images they have. I am assuming that the oncology surgeon and the oncologist are in the same network and would have access to all your medical records. 

For my case, we switched medical providers so I brought a CD of my medical records including images from the old provider over to the new provider. It was faster than waiting for the old provider to release the images to the new provider since they are on different patient records systems.

[Jenny in Florida]

So, here's a specific question, prompted by LMD's comment about her daughter's lump growing quickly. I'm trying to decide it this is my imagination or just because I'm now aware there is "something" there or what, but I swear the lump is visibly and palpably larger than it was when I went to my PCP just a couple of weeks ago,

The day I went in, the only visible evidence was a little dent on the side of my breast. It had been there for a while, but was so subtle that I kept thinking it might be a shadow. I could feel "something," but there was no protrusion I could see. Over the past few days, though, I've started to notice there's a definite rounding on the surface, and then yesterday (maybe the day before?), I saw some "pulling in" underneath the lump, too.

There's also a little lingering bruising where they poked the needle in for the biopsy. So I kind of wondered if the biopsy, itself, my have caused some extra swelling?

Or maybe I'm just imagining things?

Edited to add: So, the American Cancer Society page does say that core needle biopsies can can additional swelling. Let's go with that.

Edited August 2, 2019 by Jenny in Florida

[historically accurate]

I was diagnosed right before Thanksgiving shortly after I turned 35 and had a BRCA test within 1-2 weeks. I was scheduled for a lumpectomy followed by radiation a couple of days before Christmas; that was changed to a double mastectomy due to a positive BRCA finding. The mastectomy was toward the end of January as it was fast-growing but still in stage 0. I had an MRI sometime in December as well and lymph node testing the day of the surgery. I thought it rather fast, but the nurses at the plastic surgeon's office always commented on it was so nice that I had time unlike many of the women they saw. The only actual symptom I had was itching in the ni**le; I never had any palpable lumps.  

I agree with bringing someone to all of the appointments; I had DH (not the best at remembering things), my mother (really good note taker but no medical knowledge), and my BIL (who is a pastor and does this with his parishioners often so he was the best at it). 

[Guest]

Jenny, honestly, you’re not bugging anyone! It’s an anxious place to be in; we understand. 

For my first appointment with the surgeon, I came with dh and a friend who was willing to be my “secretary.” This was SO helpful, I cannot even express it. Obviously, it depends on if you have the right sort of friend for this, but in my case, this is someone who is the wife of a doctor, not freaked out by medical things, very intelligent and kind-hearted. She was seriously the most perfect friend for this meeting! So if you have someone like that, it’s really helpful because it’s a LOT to take in and, if any bits of it are sort of *worst* news, it’s nice to have additional people who can help process the details. 

When I met with my surgeon, she explained all aspects of my tumor and gave her best guesses (which turned out to be accurate) in other cases, like, she did not think mine had moved outside of the breast. She presented a couple of different options based on what my goals were and based on the tumor profile, for example, how important is the aesthetics of the breasts to me? She didn’t ask that directly, but I can see where her questions were helping her get a picture of how meaningful it was to me to have aesthetically pleasing breasts.

Timeline was about like this: in August, I felt the lump, but thought it was a cyst and just monitored it for a few weeks. It didn’t go away. In September, I had the ultrasound and mammogram, then was urged to get a biopsy. Got that in a couple of days. Results took, I think, five days. Surgeon called me and diagnosed me on October 1. Ithink I met with her by the end of that week, so maybe four or five days later. Surgery (lumpectomy) was October 30th. During the month of October, I had several things like blood draws and preparing for surgery, and also genetic screening. Several weeks after surgery, I developed Axillary Web Syndrome and began exercises and PT for that. I met with the radiation doctor in, I think, November, but my arm range of motion was too terrible to begin radiation. I think it was December when I got my tumor typing back. The need for chemotherapy would be determined by this and/or if it had moved outside the breast. Neither of those applied to me, so I did not need chemo. 

For the month of January, I had radiation every day, 5 days a week. Radiation was not very difficult. I was diligent about putting on my lotion afterwards. My n!pple did get burned pretty good; that was not very pleasant. 

One thing I did during radiation which, while not crucial, was very nice was a had a Sign up Genius of friends to drive me to radiation. It is true I could have just done it myself, but it sure was nice to get to talk with a friend on the way up and back every day. It made me feel closer to those friends who helped in this way. One little point I want to make about this: I invited help from friends whom I was pretty certain were high-quality friends and I kept flakier friends out at the edges. I was very picky and careful to keep helpful people around me and to distance myself from less helpful people as much as possible. 

 

[Guest]

15 minutes ago, Jenny in Florida said:

So, here's a specific question, prompted by LMD's comment about her daughter's lump growing quickly. I'm trying to decide it this is my imagination or just because I'm now aware there is "something" there or what, but I swear the lump is visibly and palpably larger than it was when I went to my PCP just a couple of weeks ago,

Well of course, you’re not going to know until you know, but I’ll just tell you, I thought mine was surely going to be aggressive and really big because I felt like it was more “organized” and I would get little knives and needles of pain shooting up my breast. Even now, I have no idea if that was psychosomatic or a true thing, but my tumor was Grade 1 and was not spreading all over like I was making it in my head. 

 

[Arcadia]

The biopsy might have made the lump more obvious and also there is likely some swelling as well from the biopsy. There is also the subconscious feeling that once you know the lump is there, it just feels more obvious. 

I was told on a Friday morning, saw the nurse practitioner on the same Friday afternoon who explained the biopsy results to me. Then met with the oncology surgeon and oncologist a few days later on the same morning consecutively in the same medical building. The best was to just keep busy for the weekend while waiting for more info, my husband was more anxious than me. We also mentally note who we can call for help if we do need to mobilize help. 

The next steps for me after the oncology surgeon appointment was getting the CT/PET scan and MRI done as soon as possible. Both were done with contrast. 

CT scan with contrast explanation https://www.mayoclinic.org/tests-procedures/ct-scan/about/pac-20393675

MRI scan https://radiology.ucsf.edu/patient-care/prepare/mri and contrast explanation https://radiology.ucsf.edu/patient-care/patient-safety/contrast/iodinated

My husband took medical paid time off (paid family leave) for my appointments. He did answer office emails and phone calls while with me but his colleagues understand if he didn’t pick up his phone or couldn’t attend conference calls. 

Depending on your treatment regime, there is likely to be plenty of appointments and rides. For my chemo, it was six cycles at three weeks apart. That meant four days of rides (one day for chemo and three days for immune booster shots) per cycle. On the day of chemo, I also had blood tests and consultation with my oncologist to make sure that I am okay for chemo (platelets and hemoglobin level are above the minimum requirements). For radiation after my lumpectomy, the suggested regime is six weeks of weekdays. So that is another 30 days of rides.  As I don’t drive, where I go for my immune boosters and where I would be going for radiation is accessible by public transport so if I can’t get an Uber ride (and don’t want to wait for my husband) I can just take public transport home. The pharmacy I picked is just down the road from my home, a short 10mins walk away. 

Insurance and medical billing is another crazy thing. I am maxed out for the year in July and my insurance year starts in April. My husband’s employee health insurance plan is a PPO and max out at $6k out of pocket.

[Jenny in Florida]

Thank you so much to everyone who has shared your own experiences. As I said, I am a person for whom there is no such thing as "too much" information. Research is a big part of what I do, professionally, and my first reaction to any new situation -- good or not so good -- is to read/listen to/watch everything I can find on the subject. 

I feel like I'm coping pretty well. Mostly, I find myself concerned with what I would refer to as "practical" stuff, trying to think ahead about how I'm going to manage work and treatment and such. If the last couple of weeks are any indication, that part is going to be a big challenge. For example, just trying to get the results of my biopsy required 7 - 9 phone calls, each of which required me standing up and walking away from my desk for some period of time. Then it required another 3 calls to schedule the initial appointment with the surgeon, followed by another one when they called to change the time. 

Those practical issues combined with the admittedly persistent level of distraction caused by concern and uncertainty are making it super challenging for me to throw myself at this new job and make the kind of new employee impression I want to be making.

I told my husband today that I am equal parts resentful of the cancer because it's interfering with my job and resentful of the job because it's making it challenging to take care of the cancer.

Many people do this, I know. And I'll do it, too. But I suspect I will start feeling a lot more able to cope once I know what I'm actually coping with. Then I can turn my attention to dealing with the real stuff that needs me.

As always, you guys are an amazing resource, and I just couldn't be more grateful for having such a supportive community.

[Arcadia]

20 minutes ago, Jenny in Florida said:

Mostly, I find myself concerned with what I would refer to as "practical" stuff, trying to think ahead about how I'm going to manage work and treatment and such. 

 

I didn’t have to call for the results of my biopsy. The nurse navigator called me on Friday (she was supposed to call me by Monday). The nurse navigator was the one who scheduled the surgeon and oncologist for me when I met her.

When we decided to go for a second opinion, the nurse navigator at the “new” place did all the scheduling for me. We saw the oncology surgeon less than an hour after meeting the nurse navigator and then we saw the oncologist less than half hour later. We saw the medical social worker while waiting to see the oncology surgeon. So nurse navigator followed by medical social worker followed by oncology surgeon followed by oncologist, all in one morning and same building. 

The first thing we did after seeing the oncology surgeon and oncologist is to put email as my preferred way of contact and to put my husband’s cellphone number as the backup contact. My CT scan, MRI, oncologist appointments and chemo appointments were made on the system after the first meeting with the oncologist, before we leave the building. 

Since my CT scan and MRI didn’t turn up anything unexpected, we just followed the planned oncologist and chemo appointments. I did change a chemo appointment (by a few days) to after my kids’ AP exams. Since everything was online, it was easy to make any changes to my appointments either by phone or in person and be able to see my updated appointment schedule immediately.

You would have a much clearer picture of your potential schedule after meeting your oncology surgeon. The oncologist surgeon would suggest the treatment and would give you days to think about it. I already knew I would prefer a lumpectomy, no port and no wig. My husband knew what I prefer so he reiterated my preference to the oncology surgeon and oncologist. My oncologist originally thought I would change my mind about the port and the wig (covered by our insurance) but he didn’t insist. My husband and I reiterated at every appointment that we want the least invasive choice of treatment for me. We don’t want something to be done because it is standard procedure. We want it to be done because I really need it. We had a polite argument about lymph nodes removal. The nurse practitioner that we saw when my oncologist was on family vacation was rather bossy/condescending  (all my patients do this, no room for discussion kind of speech) and my husband wasn’t happy with his attitude.

Link to explanation of port https://www.cancer.gov/publications/dictionaries/cancer-terms/def/port

Link to explanation of sentinel lymph node removal https://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/about/pac-20385264

https://www.cancer.gov/news-events/cancer-currents-blog/2017/breast-cancer-lymph-node-removal

[Jenny in Florida]

9 hours ago, Arcadia said:

 

I didn’t have to call for the results of my biopsy. The nurse navigator called me on Friday (she was supposed to call me by Monday). The nurse navigator was the one who scheduled the surgeon and oncologist for me when I met her.

When we decided to go for a second opinion, the nurse navigator at the “new” place did all the scheduling for me. We saw the oncology surgeon less than an hour after meeting the nurse navigator and then we saw the oncologist less than half hour later. We saw the medical social worker while waiting to see the oncology surgeon. So nurse navigator followed by medical social worker followed by oncology surgeon followed by oncologist, all in one morning and same building. 

The first thing we did after seeing the oncology surgeon and oncologist is to put email as my preferred way of contact and to put my husband’s cellphone number as the backup contact. My CT scan, MRI, oncologist appointments and chemo appointments were made on the system after the first meeting with the oncologist, before we leave the building. 

Since my CT scan and MRI didn’t turn up anything unexpected, we just followed the planned oncologist and chemo appointments. I did change a chemo appointment (by a few days) to after my kids’ AP exams. Since everything was online, it was easy to make any changes to my appointments either by phone or in person and be able to see my updated appointment schedule immediately.

You would have a much clearer picture of your potential schedule after meeting your oncology surgeon. The oncologist surgeon would suggest the treatment and would give you days to think about it. I already knew I would prefer a lumpectomy, no port and no wig. My husband knew what I prefer so he reiterated my preference to the oncology surgeon and oncologist. My oncologist originally thought I would change my mind about the port and the wig (covered by our insurance) but he didn’t insist. My husband and I reiterated at every appointment that we want the least invasive choice of treatment for me. We don’t want something to be done because it is standard procedure. We want it to be done because I really need it. We had a polite argument about lymph nodes removal. The nurse practitioner that we saw when my oncologist was on family vacation was rather bossy/condescending  (all my patients do this, no room for discussion kind of speech) and my husband wasn’t happy with his attitude.

Link to explanation of port https://www.cancer.gov/publications/dictionaries/cancer-terms/def/port

Link to explanation of sentinel lymph node removal https://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/about/pac-20385264

https://www.cancer.gov/news-events/cancer-currents-blog/2017/breast-cancer-lymph-node-removal

 

Edited to add: Thank you for the information links! I'm off to read now.

Sounds like our health networks function pretty differently. The system I'm enrolled in seems to require a lot more hands-on involvement from the patient.

The way this has played out for me so far is:

1. The day I found the lump, I called my PCP to make an appointment and was scheduled for the following day.
2. I saw the PCP, who confirmed there was something and worked with me while I was on-site to arrange the diagnostic mammogram and ultrasound for later that day. (Normally, this would have required me going back another day, but because I explained that I was starting a new job on Monday, they pulled a few strings to get me in right away.)
3. I drove across town to another facility to have the imagining done. A doctor analyzed the images while I waited. While I was in the building, I spoke to a "breast care coordinator," who basically explained the test results to me and took some information about my preferences for scheduling the biopsy. She also assured me that she was available whenever I needed help or support. All of that was on a Friday.
4. On Monday, I got a call from the facility that would do the biopsy -- which was not the one I had requested, but apparently was the one that had the earliest availability. I was at work and didn't recognize the number so didn't pick up the phone. After I had a chance to listen to the voicemail, I called back, but had to leave a message. They called me back later, and this time, because I was expecting the call, I answered. The next available appointment was for the next day, Tuesday, afternoon. Because there were multiple sites, I was told to clear the whole afternoon for the procedure. I went to my brand new boss and told her that I had to take time off that I hadn't even earned yet.
5. I did the biopsy on Tuesday and was told to follow up with my regular doctor on Friday.
6. On Friday morning, I called my regular doctor, got through the phone prompt system and spoke to the nurse, who said she would check for me. She then put me on hold. After waiting on hold for nearly 10 minutes, I gave up and decided to try calling the breast care coordinator. I left her a message explaining that I was trying to follow up but wasn't having any luck and asking if she had any information for me. She apparently called my doctor's office, because I got a voicemail from them (back at my desk and unavailable to answer the phone) basically just saying they were following up with me and to give them a call when I had a chance. Next time I could get away, I called them back, got through to the nurse, who told me the report had been sent over, but the doctor hadn't yet reviewed it and she couldn't give me any information. She suggested I call back later. I tried again at lunch, waited on hold, spoke to the nurse, who said they were waiting to hear from the doctor about whether they could give results over the phone or I needed to schedule an appointment. I explained, firmly, that I needed this to happen over the phone because I absolutely could not take more time off work unless it was absolutely necessary. (I'm still irritable about the incident a couple of years ago when I had the cervical biopsy and they made me drive across town to an in-person appointment and wait 20 minutes for a doctor to come in and tell me everything was fine. Go home.) I honestly don't remember how many more back-and-forths there were that day, but I did call the breast care coordinator one more time and leave her a message asking if there was anything she could do to shake loose the info for me before the end of the day so I didn't have to wait through the weekend. By that time it was after 3:00 on a Friday afternoon, and it was radio silence for the rest of the day. 
7. On Sunday afternoon, while I was at the hair salon and separated from my phone, the doctor called and left a message saying he had the results and wanted to speak to me. He asked me to "give him a call" on Monday. The call was made from a private number, not from the office line, and he left no alternative call-back number that would have allowed me to reach him earlier.
8. Bright and early Monday morning, I called, got put on hold but decided I was waiting it out that time, no matter what. Finally, the doctor came on and gave me the diagnosis. He instructed me to go ahead and make an appointment with the surgeon and said he was also sending me a referral for an oncologist.
9. I called the surgeon to make an appointment, got put on hold to wait for the scheduler and ran out of time on my break to wait for her.
10. I called back later in the day, got put on hold but did manage to speak to the scheduler, who said she needed to check the schedule and would call me back as soon as possible.
11. She called me back late that afternoon, and made an appointment for the following Monday (tomorrow). I let my boss know that I would be needing time off that morning for the appointment.
12. On Friday afternoon, the scheduler called me again asking to change the time of the appointment. Fortunately, they made it earlier in the day, which actually makes it easier for me to go and then get in most of the day at work. I let my boss know the schedule had changed.
13. When I got home from work Friday evening, the oncology referral was in the mail. But, of course, it was after 6:00 by the time I got home and, therefore, too late to call for an appointment. I tried calling over the weekend, figuring I could at least leave a message and they would call me back on Monday, but their phone system didn't allow me to do that. So, I will call on Monday and, I suspect, begin yet another round of calls-holds-messages-call backs. (The oncologist's office isn't far from the surgeon, though. So, if I have the time and energy to do so, I may try just stopping by the office in person after I see the surgeon and speaking to them in person about scheduling.)

As I mentioned earlier, my network does have an online patient portal; however, my experience with it thus far is that nobody actually reads the messages and that appointment scheduling requests seem to go to the bottom of the priority list and still require someone from the office calling me to actually do the scheduling. It is possible to select a date and time from the calendar, but only for routine, well-visit kinds of things and only for dates about three months out. They do not do any meaningful contact via email except for billing.

I'm trying to imagine what this will be like once I actually begin treatment.

Edited August 4, 2019 by Jenny in Florida

[Arcadia]

39 minutes ago, Jenny in Florida said:

Sounds like our health networks function pretty differently. The system I'm enrolled in seems to require a lot more hands-on involvement from the patient.

 

I think the main difference is that I have always gone to a medical provider that is either a “under one roof” medical center or in the case of my obgyn has her clinic inside a maternity hospital. (ETA: I cannot drive so I need the under one roof for pulmonary, obgyn, allergy for myself, urgent care for family, and pediatrician for my kids)

I go to Stanford Cancer Care Center (https://stanfordhealthcare.org/medical-clinics/stanford-cancer-center-palo-alto.html) which is next door to Lucille Packard Hospital. I got my MRI and CT scans done at their other location as the queue at that location is shorter, and my medical team gets my scan results on their system within 5mins of the scans being completed. So if my medical team needs other tests done, I would know before I leave the MRI/CT scan imaging center.

When my ultrasound and mammogram were done prior to lumpectomy, the ultrasound/mammogram dept checks with my oncology surgeon to make sure she doesn’t need more images. I had more images done and was released to go home after my oncology surgeon said she has all the images she needed for my lumpectomy.   

I find Page 6 to 9 of 84 (patient intake questionnaire) and page 21 of 84 (25 what to expect) onwards useful reading before meeting the oncology surgeon and oncologist. https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/cancer/Stanford-Hospital-Cancer-Patient-Family-Resource-Guide.pdf

Edited August 4, 2019 by Arcadia

[umsami]

I got a lot of good information from breastcancer.org's Forums.

My biopsy ended up benign, but I was impressed that I had the results within 24 hours.  This was in SW FL.  I sought out a female radiologist whose entire specialty was breast cancer and women.  I think it made a difference.  The best advice I was given was to always keep one of the ice packs in the freezer, so I could switch them out of my bra when the other one was warm.  My radiologist was impressed at how good the biopsy site looked.

I ended up with a breast MRI the following year....and it was just weird.  Not as uncomfortable as the MRI on my shoulder....just loud and weird.  You are face down in kind of like a massage table thing....your breasts hang down in these cut outs.

I don't remember exactly where you are, but Moffitt in Tampa has an excellent reputation.

Edited August 4, 2019 by umsami

[Jenny in Florida]

23 minutes ago, Arcadia said:

 

I think the main difference is that I have always gone to a medical provider that is either a “under one roof” medical center or in the case of my obgyn has her clinic inside a maternity hospital.

 

That definitely makes a difference. I grew up in California with an under-one-roof HMO, which made some things easier. However, that is not available to us. We do have an option on our insurance plan that is called HMO, but it's still not under one roof. It's just a network of providers that means no additional costs as long as you stay in your local network. So, still not as streamlined as what I grew up with or what it sounds like you have, but we can't use it anyway, because we are still covering our daughter, who lives in another state. 

I would dearly love to have that kind of option. 

[Kareni]

I've no experience, Jenny, but want to send positive thoughts and good wishes as you move forward.

Regards,

Kareni

[ktgrok]

Please please please make sure the doctors you see are aware of you neuropathy issues! Make a big deal of it, and explain you have NOT had a diagnosis yet. they really need to coordinate all this. Maybe ask the surgeon if they can help, if they think it could be related, and if there is a medical system in the state where all this could be handled together. 

Edited to add: Maybe look into the Orlando Health UF Cancer center? They treat multiple types of cancer, and have all sorts of specialists, and of course are affiliated with the hospital so may be better able to coordinate the neuropathy issues. By that I mean, they deal with tumors on the spine/brain already, so would know what type of imaging is needed to rule that out, etc. They are also a Cancer Center of Excellence, and I am a BIG believer in going to a center of excellence when possible, they have to keep track of outcomes, infection rates, etc etc to get that designation. https://www.orlandohealthcancer.com

Edited August 4, 2019 by Ktgrok

[Arcadia]

Regarding neuropathy, I had numbness in my hand and feet after the first few chemo. I just kept myself in constant motion as much as possible at home and the numbness went away. 

When I mentioned to the chemo nurses, they said they could ice pack/bath my feet and hands during chemo to reduce the risk of neuropathy. I already have cold hand and feet during chemo (probably due to existing blood circulation issues as well as on/off anemia since childhood) and just not using heat packs during chemo seems to be good enough for me. 

Hopefully you do not need chemo. If you do, you might want to ask for ice bath/packs during chemo to reduce neuropathy risks.

[umsami]

2 hours ago, Ktgrok said:

Please please please make sure the doctors you see are aware of you neuropathy issues! Make a big deal of it, and explain you have NOT had a diagnosis yet. they really need to coordinate all this. Maybe ask the surgeon if they can help, if they think it could be related, and if there is a medical system in the state where all this could be handled together. 

Edited to add: Maybe look into the Orlando Health UF Cancer center? They treat multiple types of cancer, and have all sorts of specialists, and of course are affiliated with the hospital so may be better able to coordinate the neuropathy issues. By that I mean, they deal with tumors on the spine/brain already, so would know what type of imaging is needed to rule that out, etc. They are also a Cancer Center of Excellence, and I am a BIG believer in going to a center of excellence when possible, they have to keep track of outcomes, infection rates, etc etc to get that designation. https://www.orlandohealthcancer.com

There's a Mayo Clinic branch in Jacksonville, too.  They are famous for their one stop shopping so-to-speak for medical care, coordinating care between specialists, etc. A family member went there for one issue, and one of the scans revealed potential other issues, and they left with a coordinated plan with multiple specialists addressing multiple issues.

[ktgrok]

Oh, and some insurance companies actually waive your deductible if you go to a center of excellence for certain things. They know that they save money by having fewer readmissions ,etc so they incentivize it. 

 

[Jenny in Florida]

5 hours ago, Ktgrok said:

Please please please make sure the doctors you see are aware of you neuropathy issues! Make a big deal of it, and explain you have NOT had a diagnosis yet. they really need to coordinate all this. Maybe ask the surgeon if they can help, if they think it could be related, and if there is a medical system in the state where all this could be handled together. 

Edited to add: Maybe look into the Orlando Health UF Cancer center? They treat multiple types of cancer, and have all sorts of specialists, and of course are affiliated with the hospital so may be better able to coordinate the neuropathy issues. By that I mean, they deal with tumors on the spine/brain already, so would know what type of imaging is needed to rule that out, etc. They are also a Cancer Center of Excellence, and I am a BIG believer in going to a center of excellence when possible, they have to keep track of outcomes, infection rates, etc etc to get that designation. https://www.orlandohealthcancer.com

 

Thanks, Katy. I mentioned this to my husband, and he is going to check to see whether that facility is in our provider network. 

The surgeon I'm seeing tomorrow is actually the same doctor who did my thyroid surgery a few years ago. I had a good experience with him then and so am feeling fairly positive about sticking with him for this. However, I have a friend whose husband just went through a diagnostic round at the Mayo in Jacksonville and raved about the excellent care he received. So, at this point the plan is to see the local surgeon tomorrow and start the ball rolling with the oncologist, then see how I/we feel.

[ktgrok]

Is this a general surgeon or a surgical oncologist?

[TravelingChris]

On 8/2/2019 at 7:43 PM, Arcadia said:

The biopsy might have made the lump more obvious and also there is likely some swelling as well from the biopsy. There is also the subconscious feeling that once you know the lump is there, it just feels more obvious. 

I was told on a Friday morning, saw the nurse practitioner on the same Friday afternoon who explained the biopsy results to me. Then met with the oncology surgeon and oncologist a few days later on the same morning consecutively in the same medical building. The best was to just keep busy for the weekend while waiting for more info, my husband was more anxious than me. We also mentally note who we can call for help if we do need to mobilize help. 

The next steps for me after the oncology surgeon appointment was getting the CT/PET scan and MRI done as soon as possible. Both were done with contrast. 

CT scan with contrast explanation https://www.mayoclinic.org/tests-procedures/ct-scan/about/pac-20393675

MRI scan https://radiology.ucsf.edu/patient-care/prepare/mri and contrast explanation https://radiology.ucsf.edu/patient-care/patient-safety/contrast/iodinated

My husband took medical paid time off (paid family leave) for my appointments. He did answer office emails and phone calls while with me but his colleagues understand if he didn’t pick up his phone or couldn’t attend conference calls. 

Depending on your treatment regime, there is likely to be plenty of appointments and rides. For my chemo, it was six cycles at three weeks apart. That meant four days of rides (one day for chemo and three days for immune booster shots) per cycle. On the day of chemo, I also had blood tests and consultation with my oncologist to make sure that I am okay for chemo (platelets and hemoglobin level are above the minimum requirements). For radiation after my lumpectomy, the suggested regime is six weeks of weekdays. So that is another 30 days of rides.  As I don’t drive, where I go for my immune boosters and where I would be going for radiation is accessible by public transport so if I can’t get an Uber ride (and don’t want to wait for my husband) I can just take public transport home. The pharmacy I picked is just down the road from my home, a short 10mins walk away. 

Insurance and medical billing is another crazy thing. I am maxed out for the year in July and my insurance year starts in April. My husband’s employee health insurance plan is a PPO and max out at $6k out of pocket.

We max out every single year.  I wonder if it will still be so when dd drops out of our plan when she gets a job.  We start in Jan, and depending on hospitalizations, procedures, and ER visits, we max out always within 6 months.  But once dd isn't on it, I don't know.  Because dh is starting to use more insurance now too.

[mmasc]

I hope your appointment goes really well today and you get information and answers to help you move forward. 

[ktgrok]

Thinking of you today. 

[Jenny in Florida]

Thanks, everyone, for the support and good thoughts.

The meeting with the surgeon went as well as to be expected of such a thing. He was really good about explaining everything, reviewing all my scans with us, and answering all of our questions. (I guess we asked good ones, because he asked at one point if either of us is in health care.) I talked a bit about the frustrations I've experienced so far in terms of making tons of phone calls and such and mentioned that a couple of friends had suggested I consider the UF cancer facility or even Mayo. He seemed surprised that I had not yet been assigned a coordinator or navigator (turns out the woman who talked with me about the biopsy was only my coordinator for the initial imaging stuff). When we finished the exam and consultation, he had us wait for a few minutes while he made a call, and he had a coordinator in the office in person within about 10 minutes assuring us that she would be taking care of everything for me and that there is no need for me to "leave the system."

What we know at this point:

• We're looking at stage 2, grade 1.
• The lump is positive for both estrogen and progesterone receptors and negative for HER2, all of which is good news. 
• The lump does seem to have grown/changed a bit since my initial exam a couple of weeks ago. The surgeon is slightly concerned about the new puckering above and below the lump.
• As far as he can tell based on the existing scans, the lump doesn't seem to have expanded beyond its quadrant, which means I should be a good candidate for lumpectomy/radiation. 

I have an appointment for my initial consult with the radiation oncologist tomorrow morning. I am scheduled for a breast MRI on Saturday and a PET scan a week from tomorrow. The coordinator let me know she has put in a request for an appointment with the medical oncologist, but that may not happen for a couple of weeks unless the doctor's preliminary review of my records suggests they will want to do any chemo before surgery.

So, that's where I am for now.

Thank you all, again, for helping me process and plan.

[ktgrok]

1 hour ago, Jenny in Florida said:

Thanks, everyone, for the support and good thoughts.

The meeting with the surgeon went as well as to be expected of such a thing. He was really good about explaining everything, reviewing all my scans with us, and answering all of our questions. (I guess we asked good ones, because he asked at one point if either of us is in health care.) I talked a bit about the frustrations I've experienced so far in terms of making tons of phone calls and such and mentioned that a couple of friends had suggested I consider the UF cancer facility or even Mayo. He seemed surprised that I had not yet been assigned a coordinator or navigator (turns out the woman who talked with me about the biopsy was only my coordinator for the initial imaging stuff). When we finished the exam and consultation, he had us wait for a few minutes while he made a call, and he had a coordinator in the office in person within about 10 minutes assuring us that she would be taking care of everything for me and that there is no need for me to "leave the system."

What we know at this point:

• We're looking at stage 2, grade 1.
• The lump is positive for both estrogen and progesterone receptors and negative for HER2, all of which is good news. 
• The lump does seem to have grown/changed a bit since my initial exam a couple of weeks ago. The surgeon is slightly concerned about the new puckering above and below the lump.
• As far as he can tell based on the existing scans, the lump doesn't seem to have expanded beyond its quadrant, which means I should be a good candidate for lumpectomy/radiation. 

I have an appointment for my initial consult with the radiation oncologist tomorrow morning. I am scheduled for a breast MRI on Saturday and a PET scan a week from tomorrow. The coordinator let me know she has put in a request for an appointment with the medical oncologist, but that may not happen for a couple of weeks unless the doctor's preliminary review of my records suggests they will want to do any chemo before surgery.

So, that's where I am for now.

Thank you all, again, for helping me process and plan.

Did you talk to him about your neuropathy, and frustrations with getting that addressed as well? Can the coordinator you dealt with handle that for you? I've very concerned that they are not going to do the scans for that, and they need to as it may alter your treatment course. 

[Jenny in Florida]

4 minutes ago, Ktgrok said:

Did you talk to him about your neuropathy, and frustrations with getting that addressed as well? Can the coordinator you dealt with handle that for you? I've very concerned that they are not going to do the scans for that, and they need to as it may alter your treatment course. 

 

We did talk to him about it, and he listened and made notes. He doesn't think, at this point, that we have any reason to believe the neuropathy is related to the breast cancer, but did say that the PET scan would let us know if there was anything. He also said that he has had a couple of women who presented with breast cancer that turned out to have spread to their spinal chords and "they didn't do well." 

Just out of curiosity, because I'm not finding any satisfactory answers with my friend Google, in what way would it alter the treatment course to scan for or diagnose the cause of the neuropathy (other than the obvious and hopefully-not-the-case situation in which it turns out to be related to the breast cancer)?

[Arcadia]

1) The nurse navigator/coordinator is the liaison for the cancer care team. Ours is quite a slacker and we find it easier to liaise directly with the oncologist and oncology surgeon through my online patient portal. The nurse navigator doesn’t take care of coordinating for non-cancer issues like my preexisting asthma. My oncologist does take note of that when monitoring effects of my chemo treatments. I’m underweight so was assigned a dietitian as well.

2) It would be useful for the surgeon doing the lymph node removal to know the cause of your neuropathy so as not to worsen it. If lymph node removal isn’t required, then that’s one thing less to worry about. In your case, chemo isn’t needed so there isn’t a need to worry about chemo induced neuropathy and reducing the risk for that.

While the full body MRI and PET scans aren’t very detailed, they do provide a lot more info to the medical team. While the MRI and PET scan staff aren’t supposed to say anything, those that did mine kind of let slip that there was nothing unexpected right after my scans. I did get the reports on my online patient portal the same day so I got to see the reports before my oncologist went over them with me.

[Guest]

Quote

• e're looking at stage 2, grade 1.
• The lump is positive for both estrogen and progesterone receptors and negative for HER2, all of which is good news. 
• The lump does seem to have grown/changed a bit since my initial exam a couple of weeks ago. The surgeon is slightly concerned about the new puckering above and below the lump.
• As far as he can tell based on the existing scans, the lump doesn't seem to have expanded beyond its quadrant, which means I should be a good candidate for lumpectomy/radiation. 

Your profile is very similar to mine. Mine was also ER and PR+, HER2- and was grade 1.  Hopefully, this will be relatively easier to address. 

I’m glad you got the nurse navigator assigned. Mine was absolutely such a huge help. I loved her. 

[Arcadia]

Genetic testing and counseling was offered as part of my cancer care package. We decided not to take up that option even though it would be covered by insurance.

https://www.cancer.org/latest-news/genetic-testing-and-counseling-for-breast-cancer-can-help-guide-tough-decisions.html

On the first meeting with my oncology surgeon and my oncologist, a Complete Blood Count (https://medlineplus.gov/lab-tests/complete-blood-count-cbc/) and Comprehensive Metabolic Panel (https://medlineplus.gov/ency/article/003468.htm) was run for baseline and for trouble spots (e.g anemia, low platelets, kidney or liver issues) 

[ktgrok]

I definitely agree it is unlikely and hopefully not related to the current cancer, but they need to rule that out. But depending on the cause anything from drugs that interact with each other, even as simple as pain meds, etc double be effected. Also, if it is a spinal issue due to compressed nerves that can be a factor in how you are positioned while recovering, etc. But I'd mostly be concerned about 1. ruling out metastasis and 2. drug interactions, etc. 

[Harriet Vane]

I have no personal experience to offer, but I want you to know that I prayed for you tonight and I hope this season passes quickly. May God give you full health soon.

[Jenny in Florida]

So, because I know how valuable I have found reading the updates Arcadia has been sharing about her treatment, I figured I'd poke my head in here with the latest news.

I did my initial meeting/exam with the radiation oncologist last Wednesday morning. I really like her and definitely feel like I will be in good hands. 

The breast MRI was Saturday, which wasn't the most pleasant thing I've ever had to do. I had a negative experience with an MRI a couple of years ago and have been more than a little skittish about the idea ever since. So when I was told I would be doing the breast MRI, I tried looking up information about the equipment being used at the center I would be going to and, when that didn't answer my questions, I reached out to the care coordinator. She put me in touch with the imaging coordinator, who talked to me about both the MRI and the PET and agreed that it would be a good idea for me to have a light sedative before each procedure. The nurse from the surgeon's office called and told me she was putting in a prescription for me, but then it turned out there wasn't anything for the MRI. My husband encouraged me to reschedule to give us time to get me the drugs, but I really didn't want to delay and so decided to forge ahead. I happen to be a person who gets drowsy if I take anything stronger than a Tylenol, so once we knew for sure nothing had been prescribed, I took half a dose of an OTC antihistime I had in my purse, which, in combination with an incredibly patient tech who let me test out the equipment and make sure I was going to be okay before he actually hooked up the IV or anything, got me through the process.

I had been told the results would be available in 24-48 hours but didn't really think I'd hear anything until at least today. On a whim, though, I checked my patient portal account last night and discovered the report was there. If I'm reading it correctly, it looks like they found two other, very small growths, one of which is considered highly suspicious. The recommendation is to do a biopsy of that one before we decide what to do about surgery. Fortunately, all three are still in the same quadrant of the same breast, which seems to be less bad than it might be.

The report also notes something suspicious on a couple of my left ribs, which could be evidence of metastasis or just healing fractures. Given that is the side I went down hard on in my fall in early July, I like to think it's the latter. I did have x-rays at the time that showed no fractures, but apparently MRIs are better than x-rays at picking up cracks and smaller fractures.

My PET scan is scheduled for Thursday afternoon, so I guess we'll know more after that.

In general, I'm chugging along. I have been utterly exhausted for the last week or so . . . like nodding off at my desk at work exhausted. I talked to the care coordinator about it, who suggests that it's probably just my body's reaction to the emotional effort of dealing with everything. She put me in touch with a social worker, who called today to check in, but also suggested I talk to my PCP.

Because what I really, really need right now is another doctor's appointment. 

Anyway, that's the update.

Thanks, as always, for your support and good thoughts. 

[moonflower]

Stress does that to you, makes you absolutely exhausted.  

I agree with you about the ribs thing, that makes a lot of sense to me.  I always go with Occam's Razor about these things unless a doctor tells me otherwise.

[ktgrok]

My mom had lung cancer, and she also has fallen and hurt her ribs several times. She has had that same thing show up - possible suspicious areas on the ribs, and it was never cancer. Always just inflammation from falling. Ribs are pretty delicate, and often breaks won't show on X-ray until after they have already started to heal and form a callous. Fresh X-rays can miss stuff. 

Hugs. 

[Arcadia]

18 minutes ago, Jenny in Florida said:

She put me in touch with a social worker, who called today to check in, but also suggested I talk to my PCP.

 

The medical social worker and the nurse navigator both gave me a list of local support groups/organizations. The support groups are useful for providing support group sessions, free yoga sessions and other free support stuff. 

Links are to the two big support organizations near me just to give you an idea what I meant.

https://www.bayareacancer.org/#

https://www.cancercarepoint.org/

The seemingly non-stop medical appointments at the beginning were physically and mentally draining. 

[Scarlett]

Thank you for the updates.  I am very very hopeful for you for a great outcome with the info you have given.  

And yes exhaustion is part of  this emotional process you are on. 

[Arcadia]

Lumpectomy (what I learned from my experience,YMMV)  :

1) post op bra & lumpectomy drain

Insurance paid for two post operation bras/camisoles. The common brand offered to me was Amoena (which I keep spelling as amoeba   ). If there is going to be drainage after surgery, a camisole is recommended as it’s easy to pin (safety pin) the drainage bottle to the camisole.

I got one camisole on my first trip to one of the breast cancer boutique that takes my insurance as they don’t carry my size (XS) much so they ordered another one for me.

https://www.amoena.com/us-en/accessories/post-surgery-recovery-care/

I find this link about the lumpectomy drain useful https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Going_home_breast_surgery_with_drains.pdf

2) cording/AWS (axillary web syndrome)

Quill recommended exercises by Miranda Esmonde-White http://www.breastcancerrehabilitation.com/technique.html (webpage) and http://www.breastcancerrehabilitation.com/KeyExercises.pdf (poster PDF)

3) steri-strips 

Those were supposed to come off by themselves but mine were sticky. The surgeon use saline to get the steri strips for the  lymph nodes wound and the drain wound off. I use lots of water for the steri strips on the lumpectomy wound after 14 days post op since they didn’t drop off by themselves.

4) edema (water retention)

I have water retention on my calves and ankles. My fall boots are about one size bigger so I wore those post op for going out until the swelling went down.

5) fatigue (main “culprit” probably local anesthesia)

Definitely drank a lot more coffee just to keep awake. I was falling asleep in Uber (my DS14 was with me) so I had coffee before Uber if I am taking a ride by myself. The fatigue was worse than chemo fatigue for me, probably because I always had a delayed reaction to anesthesia. 

[Jenny in Florida]

Developments this week:

• My insurance company denied coverage for the PET scan. My surgeon went through the process to try and get the denial overturned, but the insurance company held firm.
• The surgeon has now ordered a combination of CT scans and a brain MRI as an alternative, which is scheduled for tomorrow evening.
• I did my initial consult with the medical oncologist, who confirms that, assuming nothing unexpected shows up on the upcoming scans or on the pathology from the tumor(s), he does not expect I will need chemotherapy, just lumpectomy, radiation and hormone therapy.

 

So, PET scan blip aside, it feels like things are moving ahead. I hope that, once we get the results from these scans, the doctors will have everything they need to make the plan.

Honestly, at this point, I'm starting to wear down.

Edited August 18, 2019 by Jenny in Florida

[Kassia]

Big hugs to you @Jenny in Florida  That's a lot.  

 

[mumto2]

Sending hugs!

[Arcadia]

Hugs.  Insurance behaves like a cranky toddler sometimes 😞 

If you have the cold compress from biopsy, that would come in useful for the lumpectomy wound swelling later. I have one and found I need more so I end up buying two small Mueller reusable hot/cold pack from Big5 Sporting Goods for $3.99. 

https://www.amazon.com/Mueller-Reusable-Cold-Hot-Pack-White/dp/B000MTF1CG

https://www.big5sportinggoods.com/store/details/Mueller+Reusable-Cold-&-Hot-Pack/2350105350104/_/A-3941788

An ex-classmate who is also an old friend told me once the treatment plan is in place, things feel more in control and less stressful. It’s the initial limbo that is very mentally and emotionally draining.

ETA:

The small Mueller reusable hot/cold pack was bigger than I needed but for the price I am okay with the size. The ones that are just nice for bra inserts are around $9 and up.

Edited August 20, 2019 by Arcadia