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Arcadia

Breast cancer diagnosis 2nd opinion? (Updated 18th June)

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Update:

Will be getting MRI done this Friday and PET scan done on Monday (ETA: changed to Wednesday due to insurance authorization). Then next appointment with oncologist. Tentative treatment is chemotherapy followed by surgery followed by radiation therapy.

Prayers and Positive Thoughts very much appreciated. 

2nd update:

her2-neu results revised from negative to borderline after review by Stanford 

3rd update: FISH testing results is HER2 positive

also saw clinical stage 2B on my oncologist patient visit notes.

4th update: chemotherapy of six cycles of 21 days apart starting next week. 

 

Edited by Arcadia
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Have you not yet spoken to or met with the oncological surgeon? So, IOW, has a surgeon discussed your biopsy report with you yet? 

In my case, I did not obtain a second opinion, but I did not consider getting one until after I had met with the surgeon and discussed my biopsy results and proposed plan of action. 

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With stuff like cancer a second opinion is ALWAYS smart. 

Take some time to look up who is doing the most work with the kind of cancer you are facing, look up what different treatment options are available, etc. 

When my mom had lung cancer the local hospitals all did the same surgery - open thoracic surgery with a HUGE recovery time and a lot of risk. But when researching I found out about a much less invasive surgery (the thoracic version of laparoscopy). The person who pioneered the surgery and developed the tools for it was at Duke, so she drove there (from south florida) to have her procedure done. She is the kind of person who does NOT heal quickly or easily and having the less invasive surgery was still very hard on her body. I cannot even fathom what the surgery that the local doctors wanted to do would have done to her. 

Often insurance companies will have what they call "centers of excellence" that meet certain standards, including a low rate of complications, and if you go to them the insurance will cover it with no deductible versus the usual process, and/or will cover a portion of travel costs. 

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I haven’t spoken to the oncological surgeon yet. The biopsy report as well as the mammogram reports given to me were rather sloppy compared to private hospitals in my country of origin. My husband feels the level of care is not there.

ETA:

My usual doctors are at a nearby medical center (PAMF) and I am within easy driving distance to Stanford Hospital.

Edited by Arcadia

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I am all for 2nd opinion and especially if your gut is telling you to get one.  Get one, it won’t hurt for you to have it and you may find a place you like or want to avoid.

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Yes, get a second opinon or transfer care to an excellent place. They may have more options for you surgically,  for example, lumpectomy instead of masectomy due to more skill and experience with biopsy. More personal eval of whether chemo is necessary...

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Arcadia, I don’t understand how or why the biopsy reports were given to you when you haven’t met with the oncolgist or surgeon yet. That is not what happened in my case. My oncological surgeon called me with the biopsy reports to tell me it was cancer and then the nurse navigator called me, set an appointment to meet with the surgeon, and at that meeting, she explained all the parameters of my cancer, and proposed a treatment course, though we would have to learn certain things along the way like chemo or not, genetic involvement, etc. 

Living where you do, it certainly does make sense to go where the care is great and where you feel confident. I had a similar fortunate range of choices because I live near to Baltimore and Washinton D.C. But I did not change from my intial doctor because I was confident in my team. 

I do think it is important (VERY) to feel confident (you and your dh) with your team. I am almost finished with cancer treatment and I am very pleased with the care I have had and my treatment plan. 

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Thanks everyone.  We had a bad experience with the Obgyn in the same medical group for my second pregnancy and switch after the first visit to a private doctor covered by our PPO. We felt they treat patients like cattle/statistics instead of personalized care that my first obgyn (country of origin) and the private US obgyn provided. I have a thick case file for my second pregnancy that my obgyn (country of origin) kindly compiled for me with very detailed notes on my first complicated pregnancy and second even more complicated pregnancy because we have to relocate but the medical group obgyn didn’t read and didn’t discuss about my serious anemia. In fact the medical group obgyn didn’t even order the anemia blood test for me given my case history. It just makes my husband very wary about this medical group, unfortunately it’s a big and convenient group and their urgent care staff has been good so far for HFMD, Strep, ear wax.

My husband is willing to pay more out of pocket of course for me to get better care. We have paid out of network to get the best care for our kids. 

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10 minutes ago, Quill said:

Arcadia, I don’t understand how or why the biopsy reports were given to you when you haven’t met with the oncolgist or surgeon yet. 

 

It says pathological report for biopsy and that’s what the nurse navigator told me. I could be wrong and getting the actual report from the oncologist or surgeon.

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But in your other thread it sounded like you already had some info about hormone receptors. That’s different from my experience; I did not get that report verbally or physically until I met, in person, the surgeon. That is when she gave me all the specifics: grading, expected stage, hormone receptor and Her-2 parameters. 

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My husband is willing to pay more out of pocket of course for me to get better care. We have paid out of network to get the best care for our kids. 

If that is an option, then it’s great for you, but is the undesirable practice the only one in-network? 

I will say one thing I never understood is how a person could switch to a different practice and still be certain care was covered. I was really paranoid about that. A couple people told me to go to a different center because it was the more famous one, but I never did figure out how one does that seamlessly for coverage. In my case, it was moot, though, and I did not need to switch. But I definitely worried whenever someone told me to go see a different doctor for part of my treatment. A friend’s husband thought I should go to Hopkins for radiation because they have more advanced equipment. But I couldn’t figure out how that would be possible unless one was already connected at Hopkins through relatives or something. 

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Given what you are saying, absolutely go somewhere else. 

Maybe ask on the breast cancer forums someone suggested in the other thread? See who people are happy with, etc. But do your own research as well. 

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5 minutes ago, Quill said:

But in your other thread it sounded like you already had some info about hormone receptors. That’s different from my experience; I did not get that report verbally or physically until I met, in person, the surgeon. That is when she gave me all the specifics: grading, expected stage, hormone receptor and Her-2 parameters. 

 

The nurse navigator explain about hormone receptors and mine is all positive except for HER2-Neu which is negative. I have those results in my report. I have the grading too in my report. The expected stage information I have to wait for the oncologist appointment.

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1 minute ago, Quill said:

If that is an option, then it’s great for you, but is the undesirable practice the only one in-network? 

I will say one thing I never understood is how a person could switch to a different practice and still be certain care was covered. I was really paranoid about that. A couple people told me to go to a different center because it was the more famous one, but I never did figure out how one does that seamlessly for coverage. In my case, it was moot, though, and I did not need to switch. But I definitely worried whenever someone told me to go see a different doctor for part of my treatment. A friend’s husband thought I should go to Hopkins for radiation because they have more advanced equipment. But I couldn’t figure out how that would be possible unless one was already connected at Hopkins through relatives or something. 

When my mom went to Duke she just called Duke up, they had a phone number for appointments. And when my ex husband was having heart problems I called the insurance company and found out about a program that covered travel expenses, etc. And with my bariatric surgery they had it set up so that if I met certain conditions and went to a center of excellence I actually paid less. 

Now, all this is with PPO insurance, not HMO, which would be very very different. But generally it's not a big deal. The new hospital will contact your insurance company and coordinate things on your behalf. 

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1 minute ago, Ktgrok said:

When my mom went to Duke she just called Duke up, they had a phone number for appointments. And when my ex husband was having heart problems I called the insurance company and found out about a program that covered travel expenses, etc. And with my bariatric surgery they had it set up so that if I met certain conditions and went to a center of excellence I actually paid less. 

Now, all this is with PPO insurance, not HMO, which would be very very different. But generally it's not a big deal. The new hospital will contact your insurance company and coordinate things on your behalf. 

Yeah. I don’t have PPO. I have HMO. 

I’m also phone-phobic, so there’s that. 

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3 minutes ago, Quill said:

Yeah. I don’t have PPO. I have HMO. 

I’m also phone-phobic, so there’s that. 

Ah, that's the difference. It would definitely be more complicated with an HMO. You'd have to go through them, not even sure it's possible. 

Actually, dealing with my ex husband's heart failure and my mom's cancer, and both times traveling to better hospitals is a major reason we stick with PPO's. I've never needed it, but it stuck with me. 

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We haven't yet felt the need to seek a second opinion on DH's cancer, although his is much rarer than breast cancer. But I do have names on hand for when/if we feel the need. Our understanding is that most insurance policies will cover a second opinion for cancer, even out of network. So I'd start with a call to your insurance company.

I'm sorry you're having to deal with this, Arcadia, and wish you the best.

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PAMF has a really good reputation around here, but my sense is that they are expanding too quickly and not as exemplary as they used to be.  I don’t know of a better option to suggest.  I do know someone who had a different type of cancer who was very happy she got assertive and went to the Mayo Clinic.  She lives around here, and I don’t know if she has PAMF normally or not, but her normal doctors basically told her there was nothing more they could do for her, but when she went to Mayo they cured her.  Seriously.  She’s several years out from this, and cancer free now.

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Edited:

Deleted scary negligent experiences at PAMF Sunnyvale (which moved from Old San Francisco Road to MV) and PAMF MV urgent care. 

Edited by Arcadia
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Wow, that is awful.  I have heard some problem stories with them in Santa Cruz, too.  Too much building, not enough quality assurance in hiring.  

I’m so sorry you are going through this.  Not what you need on top of everything else for sure.  Let me know if there is anything I can do.  I know someone in Los Altos/Woodside who survived breast cancer years back.  Can connect you if you want.  You decide!

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I am so sorry to read this news, Arcadia. My younger sister went through stage 3, estrogen positive, and is cancer free today. She had a double mastectomy and lymph node resection. In your case, I would absolutely go to Stanford's cancer center. Sending you much love.

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I don’t have any information for you, but I was so shocked when I opened this thread because I had expected it to be about a friend or relative of yours, not you!  😞

Sending you many hugs and prayers that this is still at a very early and highly curable stage.

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Arcadia, sending hugs and prayers.

No advice beyond a firm belief that it is VERY important to have confidence in your doctors when undergoing a major health crisis.  I would definitely get the second opinion.

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Arcadia, I don't have any experience with getting a 2nd opinion for my BC, but my OBGYN directed to me to a surgeon & oncologist team that I had absolute faith in. If you don't, then by all means seek a 2nd opinion.

Sending you hugs and lots of good wishes. I've survived stage 2b, grade 3, estrogen + BC after lumpectomy and chemo and radiation. There is lots of hope with modern treatments. If you have specific questions, I'm here for you, too.

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51 minutes ago, Carol in Cal. said:

Wow, that is awful.  I have heard some problem stories with them in Santa Cruz, too.  Too much building, not enough quality assurance in hiring.  

 

The yelp reviews were as horrid as our experiences with some experience worse than ours. https://m.yelp.com/biz/palo-alto-medical-foundation-palo-alto

 I am thankful our insurance plan is a PPO. My husband found more discrepancies in my reports 😞 Now I don’t feel like a ninny for wanting a second opinion. 

Can you PM me as I can’t PM you. I was going to ask you about donating science lab supplies to needy schools after my kids are done with them. 

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I would leave that group...the nurse should not be the person to explain your tumor characteristics.  go ahead and get a copy of your imaging and pathology report, you'll need them for your second opinion or switch to a surgical oncologist at Stanford.  Also get yourself in to the dentist if you are not up to date there; if you need chemo you don't want to have to delay for dental work. 

One piece of advice, don't consult Dr. Google. There is a lot of info out there that is very broad, much not current, and it can't be extrapolated to one person, but its scary.  Scary enough you need to tell your teens not to believe the odds they will find, once you decide to tell them what's up.  

Breast cancer treatment has advanced so much that it is considered a chronic disease for many.  

Edited by HeighHo
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Definitely get another opinion, I did, although after it was over, another oncologist differed with everyone else 🙄

I'm thinking of you, Arcadia.

 

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Definitely get a second opinion.  I saw three surgeons, each of whom suggested different treatment.  It took us awhile to understand the various pros and cons, and that only came from meeting with several surgeons. 

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I don’t trust doctors (even though my dad is one). I get second opinions for stuff like my kid’s teeth, or my wisdom teeth removal, never mind something like this. 

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55 minutes ago, Arcadia said:

 

The yelp reviews were as horrid as our experiences with some experience worse than ours. https://m.yelp.com/biz/palo-alto-medical-foundation-palo-alto

 I am thankful our insurance plan is a PPO. My husband found more discrepancies in my reports 😞 Now I don’t feel like a ninny for wanting a second opinion. 

Can you PM me as I can’t PM you. I was going to ask you about donating science lab supplies to needy schools after my kids are done with them. 

My PM thing is full.

I suggest Schmahl Science, and let them know that this is for needy schools.  Belinda Schmahl is the founder and will make sure they get to the right place.  I would suggest the school I used to volunteer at, except that the really outstanding principal retired and I hear that it is much more conventional now.  Meaning, not so great.  I would be afraid that the stuff would not get used there.  

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Arcadia, I am so sorry to hear this. I am praying for you. Stanford is the best of the best for these issues in this part of the world, my suggestion is to take your results to an oncologist there for review. My friend who had a kidney transplant says that Stanford Health Care pioneers new treatments that are not prevalent elsewhere and she only trusts Stanford Health Care (as opposed to PAMF and Kaiser in our region) for complicated cases. The only issue there might be that the doctor may not be always available and a resident might consult with you on behalf of the doctor. 

Wishing you much good luck.

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11 minutes ago, mathnerd said:

 Stanford is the best of the best for these issues in this part of the world, my suggestion is to take your results to an oncologist there for review. 

 

My husband would try to get me an appointment with a particular doctor at Stanford Health Care Breast Cancer Program that is in-network. From my reports it looks like the oncology board was the one who caught the error on the reports that the radiologist signed off. So he signed off on three reports without noticing the obvious error. 

 

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13 hours ago, Quill said:

If that is an option, then it’s great for you, but is the undesirable practice the only one in-network? 

I will say one thing I never understood is how a person could switch to a different practice and still be certain care was covered. I was really paranoid about that. A couple people told me to go to a different center because it was the more famous one, but I never did figure out how one does that seamlessly for coverage. In my case, it was moot, though, and I did not need to switch. But I definitely worried whenever someone told me to go see a different doctor for part of my treatment. A friend’s husband thought I should go to Hopkins for radiation because they have more advanced equipment. But I couldn’t figure out how that would be possible unless one was already connected at Hopkins through relatives or something. 

You just call and make an appointment and make sure they take your insurance. 

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52 minutes ago, KungFuPanda said:

You just call and make an appointment and make sure they take your insurance. 

 

also the patient will need to forward his info before first appt, the person who will be setting up the appt works with the patient to have the necessary info so it can be reviewed before the appt. The new provider may not schedule the appt until the needed info has had time to arrive.

Edited by HeighHo
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9 hours ago, HeighHo said:

also the patient will need to forward his info before first appt, the person who will be setting up the appt works with the patient to have the necessary info so it can be reviewed before the appt. The new provider may not schedule the appt until the needed info has had time to arrive.

 

Got my information forwarded to the Stanford Health Care this morning as their patient care systems are linked. Have my surgeon appointment this Wednesday. Since I have not seen a surgeon or oncologist, they would be considered first opinion instead of second opinion. There was a decent cafe in-house where my kids waited while my husband accompanied me to talk with the nurse navigator just now.

My husband’s boss is very supportive and told him not to worry about taking time off to accompany me. 

Appreciate all your prayers and kind thoughts.

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27 minutes ago, Arcadia said:

 

Got my information forwarded to the Stanford Health Care this morning as their patient care systems are linked. Have my surgeon appointment this Wednesday. Since I have not seen a surgeon or oncologist, they would be considered first opinion instead of second opinion. There was a decent cafe in-house where my kids waited while my husband accompanied me to talk with the nurse navigator just now.

My husband’s boss is very supportive and told him not to worry about taking time off to accompany me. 

Appreciate all your prayers and kind thoughts.

That's wonderful that things are moving quickly for you.

Your husband's boss is a gem. My dh was told the same thing & it helped tremendously that year.

Still sending positive thoughts and prayers your way.

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nm      

Edited by ___
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On 1/27/2019 at 1:47 PM, Arcadia said:

I haven’t spoken to the oncological surgeon yet. The biopsy report as well as the mammogram reports given to me were rather sloppy compared to private hospitals in my country of origin. My husband feels the level of care is not there.

ETA:

My usual doctors are at a nearby medical center (PAMF) and I am within easy driving distance to Stanford Hospital.

 

My mother would have died decades ago if she had not been treated at Stanford. (Seriously. She knew people with her same brand of lymphoma who went to Kaiser, and they were dead within a few years.) Best in the world for her kind of lymphoma, and as a PP said, pioneering treatments used nowhere else in the world. People come from all over California – and the U.S. – to consult with their doctors. They are excellent – smart, caring, collaborative, organized, professional. Please get an opinion there!

ETA: Oops, I hadn't read all the replies. Glad you are going!!!

Edited by Laura in CA
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Update:

Will be getting MRI done this Friday and PET scan done on Monday. Then next appointment with oncologist. Tentative treatment is chemotherapy followed by surgery followed by radiation therapy.

Prayers and Positive Thoughts very much appreciated. 

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6 minutes ago, Arcadia said:

Update:

Will be getting MRI done this Friday and PET scan done on Monday. Then next appointment with oncologist. Tentative treatment is chemotherapy followed by surgery followed by radiation therapy.

Prayers and Positive Thoughts very much appreciated. 

MRI is about 45 minutes and noisy but they give you earplugs. I get this every year due to density.

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On 1/27/2019 at 1:39 PM, Quill said:

Have you not yet spoken to or met with the oncological surgeon? So, IOW, has a surgeon discussed your biopsy report with you yet? 

 

I met with the oncological surgeon this morning and the oncologist 1.5hrs later in the same center. The oncological surgeon has explained the biopsy report. Stanford Health Care is going to review my reports, mammogram images, ultrasound images and biopsy samples.

ETA:

oops. Didn’t realize that was an earlier post.

Edited by Arcadia
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1 minute ago, crazyforlatin said:

MRI is about 45 minutes and noisy but they give you earplugs. I get this every year due to density.

 

I would be going to the Palo Alto location as that’s the earliest slot.

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Did they give you a stage and grade yet?

If you haven't ever had an MRI before, you might ask your doc for a Xanax or Ativan to calm your nerves. The noise can be anxiety-provoking for some people. Also, see if they can get you into an open MRI, which is usually less claustrophobic-feeling.

My sister was greatly helped by cannabis during her chemo. I know it isn't for everyone, but if the other meds aren't helping, you might consider it as an option. It was especially helpful for her with bone pain and keeping her appetite up.

ETA: You will be in my prayers, Arcadia. ❤️

Edited by SeaConquest
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3 minutes ago, SeaConquest said:

Did they give you a stage and grade yet?

 

Grade 3. No stage given yet.

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