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

[Jenny in Florida]

26 minutes ago, Arcadia said:

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.

 

Yeah, I'm frustrated by the insurance thing. Even the report from the breast MRI specifically recommended a PET scan as follow up. However, my care coordinator tells me it's more common than not for insurance to deny PET scans as part of pre-surgery diagnostics. My response was that i would have preferred to know that was the probability before I jumped through the hoops to arrange time off work for myself and ask my husband to do the same so he would be available to drive me home (since I have issues with the enclosed thing and need to be sedated for these things). 

But, yes, I think I will feel on more solid ground once I know what I am facing. The unknown, limbo part is especially difficult for me.

[Frances]

Thinking of you. Dealing with insurance sucks.

[Arcadia]

3 hours ago, Jenny in Florida said:

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.

 

The company that did the first PET scan for me told my husband they need a particular medical code for my insurance to approve the service. So my husband called his employee health insurance plan and after a few escalations on the helpline finally got the needed medical billing code. So we managed to get my PET scan approved. The PET scan place also told us to call in the afternoon before the scan as they would usually know if insurance has approved or declined by then. 

My husband called the CT scan and MRI location to check if his insurance approved the procedures a day or two before the appointments.

2 hours ago, Jenny in Florida said:

The unknown, limbo part is especially difficult for me.

 

While waiting, check out your local breast cancer support groups for free yoga or tai chi classes. Getting fitness levels up as much as possible before lumpectomy helps during recovery.

[Jenny in Florida]

39 minutes ago, Arcadia said:

 

The company that did the first PET scan for me told my husband they need a particular medical code for my insurance to approve the service. So my husband called his employee health insurance plan and after a few escalations on the helpline finally got the needed medical billing code. So we managed to get my PET scan approved. The PET scan place also told us to call in the afternoon before the scan as they would usually know if insurance has approved or declined by then. 

My husband called the CT scan and MRI location to check if his insurance approved the procedures a day or two before the appointments.

 

While waiting, check out your local breast cancer support groups for free yoga or tai chi classes. Getting fitness levels up as much as possible before lumpectomy helps during recovery.

 

I've been working closely with the imaging center and my care coordinator on the insurance stuff. The insurance coordinator/scheduler from the center called me ahead of time to tell me about the issue, and we first tried delaying by a few days in order to give the surgeon time to negotiation/discuss with the insurance company. So, it's not lack of communication or lack of effort. Apparently, this isn't unusual; the insurance companies want providers to try the CT/MRI combo first. I honestly don't care what kind of scan(s) get done, as long as it's enough for appropriate diagnosis.

I've been doing occasional yoga and tai chi classes at the library. At the moment, though, between work and juggling the assorted doctor appointments and testing -- not to mention the fact that I am enrolled in two graduate classes that start next week, the idea of adding another activity to my schedule is overwhelmingly stressful.

I am still walking every morning, and I'm trying to be more intentional about eating properly. 

[Arcadia]

4 minutes ago, Jenny in Florida said:

The insurance coordinator/scheduler from the center called me ahead of time to tell me about the issue, and we first tried delaying by a few days in order to give the surgeon time to negotiation/discuss with the insurance company. So, it's not lack of communication or lack of effort.

 

I am in no way implying that it’s a lack of effort. What I am saying is that the insurance holder is the “customer” of the health insurance company while the surgeon and the center are the payee. 

My husband’s HR had changed employer provided health insurance from one to another because of multiple complaints. 

My husband told the health insurance customer service representative that he wants to go up the chain until the issue is resolved so he was pass up the chain until he finally got the code my  oncologist needed to use for his PET scan order to the PET scan center. 

[Jenny in Florida]

42 minutes ago, Arcadia said:

 

I am in no way implying that it’s a lack of effort. What I am saying is that the insurance holder is the “customer” of the health insurance company while the surgeon and the center are the payee. 

My husband’s HR had changed employer provided health insurance from one to another because of multiple complaints. 

My husband told the health insurance customer service representative that he wants to go up the chain until the issue is resolved so he was pass up the chain until he finally got the code my  oncologist needed to use for his PET scan order to the PET scan center. 

 

I'm sorry. I was actually coming back to edit my comments because I realized I sounded snippy.

I think all I was saying is that I don't care what specific testing is done as long as my doctors believe it's a viable alternative. The coordinator tells me this is common. 

[Arcadia]

Hugs. I understand the emotional rollercoaster feeling. Hope the CT and MRI scans go well for you this evening. 

I meant my husband was trying to pay it forward by “nagging” his insurance for the “correct” code so that subsequent patients would benefit. It came out all wrong I guess 😞

[Jenny in Florida]

CT scans and MRI came back with a few small weirdnesses, but nothing that indicates additional cancer or seems significant to the breast cancer treatment. (I may need an EKG, based on the fact that the CT scan shows my heart may be slightly enlarged, but I have a history of small heart-related stuff, so that's not a big surprise.)

Apparently, the surgeon finally got around to looking at the report from the breast MRI, too. And he says we do need to go ahead with the biopsy on the second suspicious growth, because, while it is in the same quadrant as the original lump, it is far enough away and results in enough total material that, if it is, in fact, malignant, we may need to revisit whether lumpectomy is still viable.

So that sucks, both because I was really hoping for the less invasive surgery (not so much for aesthetic reasons, but just because removing less seems like less to bounce back from) and also because it means more delay while we schedule the additional biopsy and then wait for results.

It's now been a little over a month since I got the first "yep, that looks like it's probably cancer" ultrasound, and my reserves of "just deal with it" energy are depleting. 

[ktgrok]

Ugh, I'm so sorry this is dragging on and on. Praying for healing and some peace for you. 

[Guest]

I’m sorry that isn’t the best news. I hope it can be resolved with the simpler surgery. 

[Arcadia]

I am compiling my medical records for my reference so below is my incomplete timeline. I couldn’t find a BTDT timeline when I was diagnosed. Hope it helps

Mammogram Jan 22nd 2019 10:40am

Biopsy Jan 23rd 2019 9am

Nurse Navigator meeting Jan 25th 2019 3pm

 

Office Visit with Oncology Surgeon Jan 30th 10:30am

Office Visit with Oncologist  Jan 30th 12:00pm

 

MRI with & without contrast Feb 1st 2019 

PET scan Feb 6th 2019

 

Chemo 1 on Feb 21th 2019

Chemo 2 on March 13th 2019

Chemo 3 on April 3rd 2019

Chemo 4 on April 25th 2019

Chemo 5 on May 20th 2019

Chemo 6 on June 11th 2019

 

Echocardiogram Feb 26th 2019

Echocardiogram May 28th 2019

Echocardiogram August 23rd 2019

 

MRI with & without contrast for surgery purpose June 14th 2019

Lumpectomy  July 29th

Post op pathology report August 6th 2019

Office visit with Post op Oncology Surgeon August 7th 2019 

Briefing by Radiation Oncologist August 15th 2019 

Post op Mammogram September 4th 2019

 

 

 

[Jenny in Florida]

9 hours ago, Arcadia said:

I am compiling my medical records for my reference so below is my incomplete timeline. I couldn’t find a BTDT timeline when I was diagnosed. Hope it helps

 

 

That does help a lot, thank you. I, too, have been looking for information about typical treatment timelines and haven't had a lot of luck. I've found a couple of studies that suggest outcomes get slightly less positive with each 30-day period that passes between diagnosis and surgery (not counting cases like yours with pre-surgery chemo), but nothing about what "should" happen.

As always, I genuinely appreciate your generosity in sharing your experiences.

[TravelingChris]

Jenny,

  I am so sorry this is all taking so long.  Praying for peace for you and quick, successful resolution.

[Arcadia]

4 hours ago, Jenny in Florida said:

I've found a couple of studies that suggest outcomes get slightly less positive with each 30-day period that passes between diagnosis and surgery

 

I won’t worry about that as much as getting a “better” diagnosis. More information helps the surgeon doing the lumpectomy. 

I had savi scout tracers placed to help my oncology surgeon as I have lots of calcification in that area. So even though the lump shrunk from chemo, the calcification area was the same size (6cm spread) and the surgeon needs that out too for post operation biopsy because it is their standard operational procedure.

“SAVI SCOUT: MAKING LUMPECTOMIES EASIER FOR WOMEN WITH BREAST CANCER” https://healthcare.utah.edu/healthfeed/postings/2016/10/savi-scout.php

My Ki-67 factor was high in my biopsy report which was why the oncologist wanted chemo started as soon as possible to hopefully minimize the chance of spread.

“What does it mean if Ki-67 is mentioned in my report?

Ki-67 is a way to measure how fast the cancer cells are growing and dividing. High values (over 30%) for Ki-67 mean that many cells are dividing, so the cancer is likely to grow and spread more quickly.” https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

For my radiation treatment, the sequence is:

1) briefing by my radiation oncologist 

2) getting the mold done and a CT scan with the mold. Also the two to four tiny tattoos (to act as markers) for radiation treatment. I would also be brief on radiation care (moisturizers and stuff) at the same visit. 

3) the radiation treatment which is daily with a weekly consultation with the onsite radiation oncologist (as I choose a more convenient location for the daily treatment but would keep my radiation oncologist for long term follow up care). I could ask the nurse station if I have any questions during daily radiation treatment and if they can’t answer, the on-site radiation oncologist would be consulted. If the on-site radiation oncologist can’t answer, then my radiation oncologist would be called. 

Also my medical team doesn’t want to start radiation until a month after lumpectomy so that the lumpectomy wound has healed sufficiently. They would delay radiation if more time is needed for my wound to heal sufficiently.

4) post treatment review with my radiation oncologist 

My radiation oncologist was highly recommended by my oncology surgeon and the online reviews by patients were great too. We have only met her once and we felt comfortable that she would provide an “acceptable” (to us) level of care. My oncologist was also recommended by my oncology surgeon and the oncologist was rather professional and patient oriented. 

2 hours ago, HeighHo said:

You can also consider  the radiation oncology practice you will use...its helpful to go interview them.  

 

I agree, though OP’s surgeon might be able to recommend a few trusted ones.

[Jenny in Florida]

9 hours ago, HeighHo said:

You can also consider  the radiation oncology practice you will use...its helpful to go interview them.  

 

I have already met with both the radiation oncologist and the medical oncologist. The medical oncologist had me make an appointment for six weeks from the date of my initial consult, because he assumed I would be a few weeks post-surgery by that point.

[Arcadia]

I don’t know if you are on PPO or HMO. I have already maxed out of pocket for PPO but the bill for the lumpectomy is showing crazy numbers even though my responsibility is zero. Photos are from the Explanation of Benefits (EOB) I just received for my lumpectomy.

If you are on PPO, I would suggest keeping a binder of the bills because the paperwork does get crazy and it’s worth checking the billing if you have a high out of pocket maximum. 

 

 

Edited October 12, 2019 by Arcadia
Deleted images

[Jenny in Florida]

On 8/27/2019 at 12:34 PM, Arcadia said:

I don’t know if you are on PPO or HMO. I have already maxed out of pocket for PPO but the bill for the lumpectomy is showing crazy numbers even though my responsibility is zero. Photos are from the Explanation of Benefits (EOB) I just received for my lumpectomy.

If you are on PPO, I would suggest keeping a binder of the bills because the paperwork does get crazy and it’s worth checking the billing if you have a high out of pocket maximum. 

 

Ugh, the billing thing is insane. Every time I go in for any kind of imaging or procedure more invasive than a 15-minute conversation with a doctor, I have to hand over between $200 and $400, and I still have a nice stack of bills piling up on my desk as we type. 

And I haven't even had surgery yet.

[Jenny in Florida]

Okay, so here are a couple of specific questions for those willing to share: 

What kind of surgery did you have? Lumpectomy/mastectomy? With or without lymph node involvement?

How did you feel in the first few days right after the surgery? If you work outside the home, how long were you out of work? What restrictions, if any, did you have on activity? Basically, just how incapacitated were you, and for how long?

I have been wearing down my Googling fingers and finally broke down and asked my care coordinator what she has observed, but she just referred me to a website I've already read that didn't have the kind of been-there-done-that info I was hoping for. 

I mean, I know it's all very individual and that are countless variations depending on the specifics of my cancer. But I'm seeing credible sites that say that a lumpectomy is "usually" done as an outpatient procedure and that "most" women can resume "normal" activities within "a few days" and others that say an overnight stay is "usually not needed" and that woman "can often" resume normal activities "within two weeks." 

And now I'm in limbo waiting for the second biopsy next week and then wait another week for results --  assuming the hurricane doesn't delay anything -- and I'm facing a long weekend with nothing much to do and possibly some indeterminate amount of time after that stuck in the house with no work or school (if the aforementioned hurricane does hit us), and it takes actual mental work not to think about this all the time. 

[Arcadia]

16 minutes ago, Jenny in Florida said:

What kind of surgery did you have? Lumpectomy/mastectomy? With or without lymph node involvement?

How did you feel in the first few days right after the surgery? If you work outside the home, how long were you out of work? What restrictions, if any, did you have on activity? Basically, just how incapacitated were you, and for how long?

But I'm seeing credible sites that say that a lumpectomy is "usually" done as an outpatient procedure and that "most" women can resume "normal" activities within "a few days" and others that say an overnight stay is "usually not needed" and that woman "can often" resume normal activities "within two weeks." 

 

Since mine was on July 29th and very recent, I could still remember most details. 

Mine was lumpectomy with sentinel lymph node removal. It is an outpatient procedure. Mastectomy would be a two day hospital stay in general. I was checked in in the morning for prep work and the surgery was at 1pm. I think I could leave around 6pm. 

My lumpectomy was thankfully complications free (reactions to anesthesia runs on my maternal side so my medical team did “watch out”).  I was feeling sleepy but ok after the surgery. 

I don’t work but I was at a community college the day after surgery getting all the paperwork done for DS14 because there were hiccups in their system. I was also accompanying my kids to outside classes. 

The things that I have to do was

1) give myself more time to use the restroom before leaving the house because of the drain from lumpectomy. It was safety pinned to my camisole but I have to be careful not to tug on the drain tubing. I just wear my longer tops to cover the drain. My drain was removed about 10 days after lumpectomy.

2) since I have to keep the wound area as dry as possible, I just went for sponge bath as it was easier than showers for me. 

3) no heavy lifting on the surgery side for the first week. That wasn’t an issue for me as my dominant hand is actually my left hand while my lumpectomy was on my right side. 

4) no sleeping on the surgery side. I am a side sleeper so that was harder because I sometimes forgot and slept on my right. Then it hurts and I flip to sleeping on my left side.

My “normal activities” are cooking, accompanying kids to classes (my husband drives us), walking for exercise, shopping with my shopaholic husband, grocery shopping. I could do those the next day with generous amount of coffee. My husband has always done the laundry and wash the heavy dishes so he just helped wash whatever I left in the sink. If he see light small bowls and spoons that I use for food prep unwashed, he knows I was probably too tired to do so.

Its been a month for me and my fatigue level is still quite high. I am still running on lots of coffee. Pain is still there though mild.  I needed Tylenol for the first two days after surgery then the pain was mild enough to not need painkillers. There is some cording (AWS) so I have to massage the cording daily. 

[Jenny in Florida]

Today's unabashedly whiny not-really-an-update update:

I had the MRI-guided biopsy today. It wasn't fun. I'm not a fan of MRIs under the best of circumstances, and I had decided to fly solo on this appointment, rather than having my husband drive me. I really didn't want to take a full day off work, especially since the facility where I was scheduled is about eight minutes from my office. So I opted not to ask for meds for this one, figuring I would just power through and then drive myself to work. I have had the ultrasound-guided biopsy and the basic breast MRI in the last several weeks and assumed this would be manageable.

And it was, more or less, except that the MRI made me really dizzy. (Apparently, this is a thing that happens to some people because of the magnets?) Every time they slid me into the MRI tube, which they have to do multiple times for this procedure, I would get dizzy and a little queasy and feel like the table was tilting. And they did warn me that the actual biopsy would likely be more uncomfortable than the ultrasound version, which turned out to be very true. Plus, given my neuropathy issues, my feet and legs and, nowadays, hands tend to fall asleep and/or start cramping whenever I have to lie still for any period of time. And, just to put the cherry on the sundae, they had to go back in for one extra slice because they hadn't gotten all of the targeted specimen in the first round. 

So, by the time I climbed off the table nearly 90 minutes after we started, I was not in great shape and thinking wistfully about going home.

The procedure tech was walking me through icing the site to deal with the hematoma and said, "You're not doing anything the rest of the day, right?" I admitted that I had planned to go to work, and she shook her head and said firmly, "Nope, go home. I can give you a note."

Fortunately, because I've worked remotely the last couple of days while the office was closed for the hurricane-that-wasn't, I had my work laptop in the car. I messaged by manager, apologized and told her I needed to work from home one more day.

And now I get to wait 3 - 5 days for results -- or possibly a full week for the follow-up appointment with the surgeon's PA. 

Oh, and the doctor who did the biopsy reviewed my assorted scans and said she was planning to put in her report a "strong recommendation" that I have a bone scan to look more closely at the fractured ribs, because the fact that they are fractured doesn't actually rule out possible metastasis. She was very adamant that we should check that out before proceeding.

Who knows whether my surgeon will agree or whether my insurance would cover it even if he did, but, geez, I was really counting on this biopsy being the last testing.

Edited September 5, 2019 by Jenny in Florida

[Arcadia]

21 minutes ago, Jenny in Florida said:

Oh, and the doctor who did the biopsy reviewed my assorted scans and said she was planning to put in her report a "strong recommendation" that I have a bone scan to look more closely at the fractured ribs, because the fact that they are fractured doesn't actually rule out possible metastasis. She was very adamant that we should check that out before proceeding.

 

I thought you had a full body MRI with contrast and full body CT/PET Scan with contrast already.  My lungs and spinal cord were looked at in detail every time they did a scan. Lots of hugs 

The 15mins cold pack, 15mins without, alternating helps with the swelling from biopsy. I didn’t do that as I didn’t have enough cold packs and my swelling went down much slower. 

[Jenny in Florida]

11 minutes ago, Arcadia said:

 

I thought you had a full body MRI with contrast and full body CT/PET Scan with contrast already.  My lungs and spinal cord were looked at in detail every time they did a scan. Lots of hugs 

The 15mins cold pack, 15mins without, alternating helps with the swelling from biopsy. I didn’t do that as I didn’t have enough cold packs and my swelling went down much slower. 

 

No, my insurance firmly denied the PET scan, so I had CT scans of my chest and abdomen/pelvis and a brain MRI as an alternative. I just went and reviewed the CT reports to see whether anything about the spinal cord was mentioned. The chest report did mention the three fractured ribs, but the surgeon's PA seemed to think the recent fall accounted for that and no additional investigation was necessary. The chest CT report also mentions some mild pulmonary edema, that my heart is slightly enlarged and some kind of issue with my esophagus. Again, the PA said she had consulted with the surgeon and that none of these issues seemed to be related to the breast cancer or needed investigation in connection with that. Neither of the CT scans mentions my spinal cord at all.

The pulmonary edema, if I'm reading the info on the Mayo site correctly, could be accounted for by the recent fall (which is also what we're attributing the fractured ribs to), although I've not been a great breather for a long time and have had trouble breathing while lying flat for some time. 

We're attributing the enlarged heart to my history of atrial fibrillation associated with the (now resolved) thyroid problems.

And the esophagus? Who knows? The PA did speculate that I might need an endoscopy at some point, but I don't know whether that is something we'll need to address before the breast cancer surgery or just something I should do "eventually."

On the one hand, I'm so ready to be done with testing and get on with surgery and treatment. On the other, I'm starting to get nervous about all of the "little" stuff piling up.

[Arcadia]

13 minutes ago, Jenny in Florida said:

We're attributing the enlarged heart to my history of atrial fibrillation associated with the (now resolved) thyroid problems.

 

Have you had an echocardiogram before? I have to do echocardiogram every three months because of my chemotherapy treatment but my asthma history would have been sufficient to justify one echocardiogram being done to cover bases. 

I had an oncologist appointment yesterday and when I asked about the fatigue, the oncologist said that my fatigue after lumpectomy could be due to the general anesthesia. For some people it’s immediate reaction (side effects) but mine is delayed reaction. Since you are using the same surgeon as your previous surgery, I assume the surgeon is aware of the effects of general anesthesia on you. 

[Jenny in Florida]

12 minutes ago, Arcadia said:

 

Have you had an echocardiogram before? I have to do echocardiogram every three months because of my chemotherapy treatment but my asthma history would have been sufficient to justify one echocardiogram being done to cover bases. 

I had an oncologist appointment yesterday and when I asked about the fatigue, the oncologist said that my fatigue after lumpectomy could be due to the general anesthesia. For some people it’s immediate reaction (side effects) but mine is delayed reaction. Since you are using the same surgeon as your previous surgery, I assume the surgeon is aware of the effects of general anesthesia on you. 

 

I've had several EKGs over the years while dealing with the AF episodes. I'm assuming there will be more during surgery prep.

Yes, when they did the thyroid surgery, I ended up having to stay an extra night in the hospital because I didn't wake up as quickly as the surgeon would have liked. It doesn't surprise me, because I'm one of those people who can't so much as look at even over-the-counter medications stronger than Tylenol without getting drowsy. When I took the "mild" sedative before the last round of scans, I was basically asleep for the rest of the day.

Of course, the stuff that I take for the neuropathy that is supposed to help me sleep? That's not doing its job. I'm still clocking an average of about 5 hours per night these days.

[ktgrok]

The echocardiogram is the ultrasound of the heart, and standard with heart enlargement. It's to see how well the heart is pumping, which would be important given the pulmonary edema. 

[Jenny in Florida]

12 minutes ago, Ktgrok said:

The echocardiogram is the ultrasound of the heart, and standard with heart enlargement. It's to see how well the heart is pumping, which would be important given the pulmonary edema. 

 

Ooops, sorry. I'm popping in here to read and respond in between studying. 

Yes, I've had echocardiograms, too. Over the years, I've been told I have a heart murmur, then that I didn't, that I have mitral valve prolapse, then that I didn't, and then had a few episodes of atrial fibrillation that landed me in the hospital. I think the most recent echocardiogram was probably around the time of my last AF hospitalization, which would be about three or four years ago.

[ktgrok]

38 minutes ago, Jenny in Florida said:

 

Ooops, sorry. I'm popping in here to read and respond in between studying. 

Yes, I've had echocardiograms, too. Over the years, I've been told I have a heart murmur, then that I didn't, that I have mitral valve prolapse, then that I didn't, and then had a few episodes of atrial fibrillation that landed me in the hospital. I think the most recent echocardiogram was probably around the time of my last AF hospitalization, which would be about three or four years ago.

Did you have heart enlargement and/or pulmonary edema at that time? If those are new, I'd call your cardiologist and schedule a new echocardiogram asap. I'd want that info before surgery/anesthesia. 

[Jenny in Florida]

45 minutes ago, Ktgrok said:

Did you have heart enlargement and/or pulmonary edema at that time? If those are new, I'd call your cardiologist and schedule a new echocardiogram asap. I'd want that info before surgery/anesthesia. 

 

Okay, I went back and looked at the assorted reports posted on my patient portal. There are a few CT and x-ray reports going back to 2012, all of which specify that my heart is "of normal size" or that there is "no cardiomegaly." Some of the reports also specify that my lungs are clear. The most recent was after my thyroidectomy in late 2016. So, it does look like these issues may be new (or at least new-ish).

I don't actually have a cardiologist, since, as far as I knew, the heart issues disappeared with the thyroid problems. 

My current plan is to take my notes about the previous CTs and X-rays with me when I meet with the surgeon's PA for the biopsy follow-up next week and raise these questions with her. If that goes nowhere, then I will reach out to my GP and draw his attention to the most recent CT scan report. 

[Arcadia]

11 minutes ago, Jenny in Florida said:

Okay, I went back and looked at the assorted reports posted on my patient portal....

My current plan is to take my notes about the previous CTs and X-rays with me when I meet with the surgeon's PA for the biopsy follow-up next week and raise these questions with her. If that goes nowhere, then I will reach out to my GP and draw his attention to the most recent CT scan report. 

 

Is your surgeon and GP on your patient portal as well? I would email them through the patient portal and ask them to take a look at the previous CTs and X-rays before your biopsy follow-up. My oncology surgeon would look and she would push up the appointment if she feels there is something urgent to look into or more tests are required to confirmed.

In my case, the oncology surgeon is packed on days she sees patients but she can read through case notes and patient emails on non-patients days. For example, she does scheduled surgeries on Mondays, sees patients on Wednesday and Friday, Tuesday and Thursday are when she has the time to review case notes including recent bloodwork, scans and mammograms. So dropping her an email if I want prior medical history looked at is helpful for both of us in terms of maximizing the efficiency of consultation time.

[ktgrok]

And to be clear, I am not trying to imply that the heart/lung issue is related to the cancer. Just that if there is an issue that may need to be addressed prior to surgery/anesthesia. High blood pressure is a common cause of issues, sometimes viruses that can damage the heart, etc. But with the pulmonary edema too I'd want to be sure the heart is pumping blood as it should and not having pressure build up in the lungs causing the edema. I'd contact your primary care right away and tell them that the heart was enlarged and the pulmonary edema and ask if they can order an echocardiogram. Or ask whoever told you about the heart/lungs if they can refer you, etc. 

Did you ever see if your insurance covers the cancer center at Orlando Health? I'm still wondering if a multidisciplinary center could help coordinate all this better for you, in a more timely fashion. But I also get you don't want to switch ships midstream. 

[Jenny in Florida]

2 minutes ago, Ktgrok said:

And to be clear, I am not trying to imply that the heart/lung issue is related to the cancer. Just that if there is an issue that may need to be addressed prior to surgery/anesthesia. High blood pressure is a common cause of issues, sometimes viruses that can damage the heart, etc. But with the pulmonary edema too I'd want to be sure the heart is pumping blood as it should and not having pressure build up in the lungs causing the edema. I'd contact your primary care right away and tell them that the heart was enlarged and the pulmonary edema and ask if they can order an echocardiogram. Or ask whoever told you about the heart/lungs if they can refer you, etc. 

Did you ever see if your insurance covers the cancer center at Orlando Health? I'm still wondering if a multidisciplinary center could help coordinate all this better for you, in a more timely fashion. But I also get you don't want to switch ships midstream. 

 

I did look at Orlando Health, and our insurance does cover them. However, unless something goes seriously off the rails, I don't want to start over. 

Yeah, my husband would really like me to contact my GP now, instead of waiting. I can send a message through the portal.

[Jenny in Florida]

The surgeon's PA called this afternoon with the results of the second biopsy. The small third lump is also malignant.

Apparently, it is far enough away and results in enough material that lumpectomy is no longer an option. We are now looking at mastectomy with sentinel node biopsy.

The surgeon has also decided that, because of the heart/lung stuff on the recent CT scan, I will need to be cleared by a cardiologist before we can proceed with surgery. His scheduler gave me a short list of recommended cardiologists. So, next up on my to-do list is making the "first available" appointment with one of them. They moved my follow-up/consult to a week from Monday, because my surgeon is on his way to help out in the Bahamas. (Funny story: I was driving home thinking about all of this stuff, when I heard my surgeon being interviewed on the local NPR affiliate, talking about the Bahamas trip.) Once I have a date for the cardiology work-up, the scheduler can book an OR.

And that's all I know for now.

[Kassia]

I'm sorry, too.  Sending big hugs and lots of positive thoughts.  

[Arcadia]

13 minutes ago, Jenny in Florida said:

Apparently, it is far enough away and results in enough material that lumpectomy is no longer an option. We are now looking at mastectomy with sentinel node biopsy.

 

Could you call and clarify? My surgeon had to remove calcification as well as the lump so it was a 6cm width that she had to work with though my lump shrank during chemotherapy. The affected area was more like 6cm by 2.5cm in my case. 

Hugs. 

[Jenny in Florida]

3 hours ago, Arcadia said:

 

Could you call and clarify? My surgeon had to remove calcification as well as the lump so it was a 6cm width that she had to work with though my lump shrank during chemotherapy. The affected area was more like 6cm by 2.5cm in my case. 

Hugs. 

 

I feel pretty clear about the situation. I don't like it, but I understand. The person who gave me the news is my surgeon's PA, who works with him very closely. The surgeon also explained that this was a possibility a couple of weeks ago when we discussed that he was ordering the second biopsy. 

There are a few things going on:

• There are three lumps -- the largest one that I initially felt, a medium-sized one that the report refers to as a "satellite" that is close to the big one and this smaller one that is farther away.
• The three lumps combined "add up" to more than 6cm.
• The third lump is technically just barely in the same quadrant of the breast, but far enough away that taking it and the other two lumps and enough margin of tissue around all of them means the surgeon thinks it would not be possible to leave enough breast to make it worth attempting the lumpectomy.
• In addition to the three identifiable masses, the most recent scans of the area "just don't look good," implying that there may be more things going on than we have yet identified.

Obviously, I will ask lots of detailed questions when we meet the surgeon in person in a couple of weeks. However, everything that has been explained to me makes sense and is consistent with what the team has been discussing with me since that third mass was identified. So, while I was hoping for a different outcome, this one is not a surprise.

Edited September 11, 2019 by Jenny in Florida

[ktgrok]

I'm sorry, Jenny. That just sucks. 

[mumto2]

I am sorry that you need more extensive surgery. Sending hugs........

[sbgrace]

I'm sorry you need more extensive surgery.

I am going to pm you about masectomies.

I hate you have to wait so long too. Surgeon vacation delaying things really stinks. (Arcadia pointed out below this is not the case/sorry for quick read).   

Edited September 11, 2019 by sbgrace

[Guest]

I’m very sorry about the more extensive surgery. 

[Arcadia]

8 minutes ago, sbgrace said:

 Surgeon vacation delaying things really stinks.  

 

I think the surgeon is waiting on the cardiologist approval so it doesn’t matter if her surgeon is on vacation or not. My impression was that the surgeon would be back by the time the cardiologist sees OP.

Also I think her surgeon is going to Bahamas to help and not as a vacation.

[sbgrace]

23 minutes ago, Arcadia said:

 

I think the surgeon is waiting on the cardiologist approval so it doesn’t matter if her surgeon is on vacation or not. My impression was that the surgeon would be back by the time the cardiologist sees OP.

Also I think her surgeon is going to Bahamas to help and not as a vacation.

Ah, missed that, I'm sure it is to help, yes!

Still, I know delays are hard, even when necessary. 

Edited September 11, 2019 by sbgrace

[scholastica]

I’m so sorry it wasn’t better news.

[Frances]

I’m sorry you didn’t get better news. My thoughts are with you and your family.

[Arcadia]

Other things I had felt useful post-op was

1) Capri leggings with side pockets. The side pockets were useful for putting the post-op drain bottle as the lower the bottle was, the less air bubbles in the tubing.  The side pockets on my leggings are big enough to stuff either a cellphone or a small wallet (bifold size).

e.g. https://athleta.gap.com/browse/product.do?pid=209918002

2) having a small crossbody bag with me to put my cellphone. I left my phone at the restroom a few times at department stores (ETA: when I didn’t have a bag with me) and luckily got the phone back. However I do need my cellphone in case I need help, worse case I could message my husband and he can request a lady staff to assist me. 

Link is what I have as that’s the smallest I could find that could hold my phone, wallet, my asthma inhaler and my mobile hotspot if I need all those items. I have a smaller crossbody bag that could hold only my phone and a credit card (no space for wallet). https://www.amazon.com/FRYE-Leather-Zip-Camera-Crossbody/dp/B07CVRVTFL

Edited September 13, 2019 by Arcadia

[Annie G]

I’m so sorry, Jenny.  I hope surgery and recovery goes smoothly. Cancer just sucks. 

[Jenny in Florida]

So, here's the update:

I'm scheduled for a bilateral mastectomy tomorrow. I wrestled with the question of whether to stick with unilateral or go ahead and remove the second breast. 

And I still would not say I have any real peace with the decision, but it seems to be what makes the most sense. Only after I shared my choice with friends and family did a few of them speak up and say they think I am doing the right thing. 

Managing all of this alongside work has continued to be exhausting and stressful, even though my employer has been great. These last two weeks, especially, I have been out of the office as much as or more than I have been there. It is almost a relief now that surgery is tomorrow to know that I have the next three or four weeks to focus only on treatment and recovery.

I am, to be honest, terrified. I absolutely hate going under anesthesia. I had managed to avoid ever going under the general type until I was almost 50, and, even though I've had two operations since then, I still don't really believe I will wake up after. Add to that the fact that this is the first time I will have a major procedure  that I know I won't feel "better" on the other side of, and I feel pretty bleak whenever I let myself think about it much. 

[On not feeling "better": The other two times I have had surgery have been to remove my gallbladder and my thyroid. In both cases, I was experiencing pain or other symptoms that I knew would be relived by the procedure. This time, the cancer is causing me no symptoms, and when I come out the other side of this, I will have pain or discomfort I do not have now and my physical appearance will be permanently altered for the worse. And, yes, I do know that choosing not to have the surgery means I would likely die earlier, which is why I am not choosing that path. Right now, today, though, eventual death from untreated cancer feels like a distant possibility compared to the certain knowledge that, assuming I do wake up from the anesthesia tomorrow evening, I will be doing so without breasts and with pain I didn't have that morning.]

So, I know (or at least am trying to make myself believe) that it will be okay. I will recover, achieve and adjust to some kind of new normal. But right now, today, it just sucks.

[Selkie]

(((Jenny))) I will be thinking of you tomorrow.

[Annie G]

Sending good vibes and calming thoughts to you, Jenny. I totally understand how you feel about ‘not feeling better’ after the surgery and worrying about anesthesia. But once the cancer is out, I bet you will mentally feel a little better.  But I’m not sure anyone ever feels ‘done’ with cancer. 

‘Hope it goes smoothly. 

[Pawz4me]

((( Jenny )))

[Frances]

Sending good thoughts your way for the surgery and recovery. I hope everything goes smoothly.