Topic: Tell me more about your second opinion

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 10, 2021 12:30PM

Posted on: Sep 10, 2021 12:30PM

gretchen2021 wrote:

Hi All!

I'm not sure in which topic area this falls, but can anyone share their thoughts on seeking second opinions? I'm facing some very difficult decisions - I have a complex case (don't we all!?. I like and trust the team I'm seeing now but some of these decisions are so big that I feel like it would it be wise to get another set of expert opinions - more for corroboration than anything else.

- If you sought a second opinion, did you do so because you lacked confidence in the first group of doctors you saw or more because you wanted to learn about other options? Or because it was reassuring to hear consensus on the options?

- If you sought a second opinion, did you end up sticking with the second doctor, or was it enough to get that second opinion and you still stuck with the first doctor?

- Is it possible to get records/imaging/pathology slides without burning bridges with that first doctor's office?

Thanks for your thoughts and insights.

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Sep 10, 2021 12:38PM wrenn wrote:

Have you been diagnosed with cancer? If you fill out your profile you are likely to get more responses since it is difficult to judge what might be useful to you with no information about condition.

Hoping more chirps soon. :-)

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Sep 10, 2021 12:51PM moderators wrote:

Hi Gretchen,

You're sure to get some more good advice here soon. But in the meantime, we'd like to share this section from the main site on Getting a Second Opinion, which offers tips on how to ask for one and what to expect.

We hope this helps and please let us know what you find out!

--The Mods

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Sep 10, 2021 01:08PM armom4 wrote:

Its always a good idea to get a second opinion. If the current doctor takes that personally, that's their problem. If I were you, I would go for a second opinion. After you've met the other doctor, you can decide who you like better and stay with that one. The doctor you choose will most likely be taking care of you for the rest of your life. They should be your partner in your treatment. You want to go with whoever makes you most comfortable.

You have a right to any and all of your medical records. You won't be burning bridges if you ask for them. Just say they're for your personal record. I have copies of all my records. If I get a new scan, I ask for a copy of the report and the images. FYI, there's an awesome website called that will request records from the facilities you've been seen at. All your records from all facilities in one place!

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 2/11/2020 Lymph node removal; Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left) Targeted Therapy 3/27/2020 Herceptin (trastuzumab) Chemotherapy 3/27/2020 Taxol (paclitaxel) Chemotherapy 4/17/2020 Taxotere (docetaxel) Hormonal Therapy 5/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/1/2020 Surgery 3/3/2021 Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Surgery 6/8/2021 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant
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Sep 11, 2021 12:06AM jhl wrote:

Hi Gretchen,

I agree with Wrenn, I would like more specific information about your own cancer & what has been recommended. There is an organization in the US called NCCN - National Comprehensive Cancer Network. They have a summary that is updated frequently on what the current recommendations are for breast cancer treatment. It is dependent on the size of your cancer, the number of node(s) involved or not, metastasis and the specific pathology of the tissue biopsy.

For myself, I did not seek a second opinion because the recommendations given to me were what was current. If there was any deviation, I might have asked for one, but from my own professional and personal experience, I was confident in the team who diagnosed me. Of course, that was a multidisciplinary team and I was at a NCCN Center.

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Sep 11, 2021 08:28AM gretchen2021 wrote:

Thanks to those who posted. I appreciate it. I guess I was more interested in what led people to seek a second opinion and then what they did after they sought it. Medical treatment is no longer like the days of yore when doctors were gods and patients followed blindly. Yet, at the same time, who am I to second guess a doctor's recommended course of action? And then, on the other other hand, different doctors interpret facts differently.

My particular situation is a little unusual and it is the reason why I don't have any tags on my profile. I haven't crossed into the territory of a cancer diagnosis. My mammogram showed a large network of calcifications across top half of my small breast. A stereotactic needle biopsy indicated atypical hyperplasia and, I think, LDH, and some other high risks markers. The fork in the road now is that a going with limited surgical biopsy (that would not disfigure the small breast) would only remove a fraction of the calcifications. To remove them all, (as we assume any one of them could be hiding DCIS), would remove half of a small breast and result in a very bad outcome, cosmetically. Thus the BS has floated the idea of a mastectomy and hence my difficulty with decision-making. A mastectomy for ADH? It would be over treatment if it only turns out to be ADH, but it could also be the right treatment if there is something more serious going on. If I don't do a mastectomy, can I live with only sampling a few of the calcifications and the follow up mammos/MRIs every six months, and the anxiety?

I do suspect that I'm only pondering a second opinion because I don't like the options in front of me. I have no reason to second guess the BS. BS is making a logical argument and I intellectually understand the options. Maybe I'd just feel better about taking one path on this confusing journey if another expert corroborated the advice from the first BS.

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Sep 11, 2021 08:39AM ShetlandPony wrote:

"Maybe I'd just feel better about taking one path on this confusing journey if another expert corroborated the advice from the first BS." A common and perfectly good reason for seeking a second opinion. Any decent doctor will understand that it is a difficult decision you are facing and you want the reassurance or different perspective that a second opinion can give.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Sep 18, 2021 08:26AM - edited Sep 18, 2021 12:06PM by thedisgruntledpatient

Hi Gretchen,

A very unusual situation and I don't blame you at all for seeking a second opinion. I too have small breasts and even “a minimally invasive" core needle biopsy makes a big impact on their appearance.

Have you considered taking a low dose of tamoxifen to try and shrink or eliminate the area of calcs? Low-dose tamoxifen is being recommended by some oncologists as a course of treatment for DCIS, although post surgery. It also is starting to be recommended by some as treatment for ADH. Although ADH is not cancer and may never become cancer, it could be a way to do something more than active surveillance and without drastic, disfiguring surgery. It likely would go against the “standard of care" (I'm rolling my eyes hard typing that because, as your situation shows, one size medicine doesn't fit all) but a creative oncologist could likely get this approved by your insurance provider.

And in case you haven't seen it, there is a great primer on ADH from Dr. Susan Love's website. I can't link it but if you search her name, tamoxifen and atypical ductal hyperplasia it will pop up.

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Sep 23, 2021 05:07AM komg wrote:

I've seen 8 different doctors now for peace of mind. With me my breast grew and lymph nodes swelled up. I've been insisting on a biopsy but they keep telling me no because my ultrasound was normal. There's no MRI in my city.

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