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Topic: How important are second opinions?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: May 3, 2019 07:26AM

Ja9831 wrote:

I was diagnosed with LCIS. It was found during a lumpectomy.I do understand it’s not cancer but my risk is high with family history as well. My currently bs is for my decision on doing PDMX and understands not wanting to take meds and screenings. But should I get a second opinion anyway? My concern is if the second option is different. Do I go for another one?

Dx 4/8/2019, LCIS, Left
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May 3, 2019 08:04AM MelissaDallas wrote:

Will you change your mind about wanting a PBMX if the second opinion says they disagree with PBMX for LCIS?

Have you had genetic testing/counseling?

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 3, 2019 08:50AM Ja9831 wrote:

Honesty, no it wouldn’t change my mind. I did have genetic/counseling the only gene that came up was the ATM gene. Negative for BRCA. I work in OBGYN office 1 out of the 4 doctors said to get a second opinion thats y I’m asking.

Dx 4/8/2019, LCIS, Left
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May 3, 2019 10:55AM SimoneRC wrote:

Hi Ja9831!

So sorry you need to be here, but glad you found a great and supportive forum!

If you have not already done so, you may want to schedule an appointment with a genetic oncologist at a major cancer center since you have an ATM issue. Having ATM mutation definitely influenced my decision making process. It is not a well studied gene mutation as it is a newer discovery and pretty rare. There is data, and newer studies. Every person is different and even the ATM mutations can differ. That said, information is power and also was very helpful to me when making decisions.

Good luck and please keep us posted!

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy
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May 3, 2019 11:17AM Ja9831 wrote:

Hi SimoneRC,

I sat with a genetic counselor last year when all this started. The ATM gene was brought up but had no info on it and said not to worry about it.

Dx 4/8/2019, LCIS, Left
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May 3, 2019 02:26PM Northerngirl485 wrote:

I have also wondered this as well. I hope some chime in that have received more than one opinion on their diagnosis of LCIS and suggested treatments

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May 4, 2019 05:12PM - edited May 4, 2019 05:18PM by leaf

When I was initially diagnosed with classic LCIS, the first words from my postop visit to my breast surgeon were 'If you want bilateral mastectomies, I'm going to fall down in my chair.' So she made her opinion clear.

I put my numbers into risk calculators, which usually automatically exclude LCIS, if I hadn't taken tamoxifen, ranged up to 90% lifetime risk (Hall's breast cancer risk calculator, which was NOT peer reviewed.)

Then I went to a medical oncologist, because I was interested in tamoxifen, which he prescribed. He was also not against bilateral mastectomies, but of course, he, not being a surgeon, would not be able to do the surgery. I did (eventually) do 5 years of tamoxifen. (I say eventually because I got diagnosed with another unusual condition, and that doctor wanted to see if stopping tamoxifen affected that condition, which it didn't.) He said I probably had a lifetime breast cancer risk of about 30%.

Then I went to a tertiary care (NCI-certified cancer center), where they said they didn't recommend bilateral mastectomies, but 'wouldn't bar the way to surgery'. Since they would be out of my insurance network, and I would have very large co-pays, I was hesitant to go that route. Also, my unusual condition would make healing more difficult. When I asked them my risk of breast cancer, they said anywhere between 10% and about 60%, but its probably closer to 10% than 60%. To be more precise, I'd have to go to the literature.

So I had predictions from a lifetime breast cancer risk of 10% to 90%. A pretty wide range. (Not to mention that the lifetime breast cancer risk for the _average_ woman in the USA is about 13%,which is higher than 10%. But let's not quibble.)

When I saw my regular GP, he clued me in to how uncertain the science of breast cancer prediction is, for even the 'average' woman in the USA who had never been diagnosed with any breast cancer. While you may get numbers, they often don't tell you how uncertain they are about that number. To put it briefly and bluntly, they are VERY uncertain about YOUR numbers, unless perhaps you are diagnosed with a BRCA 1 or BRCA 2 mutation. And, of course, they have a LOT more information about the breast cancer risk of the average woman in the USA than they do about LCIS patents, even with the most common (classic) LCIS, which is what I have. (They know a lot more about the breast cancer risk in a GROUP of women than they do about the INDIVIDUAL woman.)

Then, due to retirements, I went to another gynecologist, who gave me a newer genetic test, and I found I had a deleterious mutation in a gene that is in the BRCA pathway, but is not BRCA. Because of the low numbers of patients involved, a lot is uncertain, but it is associated with an increased incidence of ovarian (and probably some increased risk of breast) cancer. (I have no known relatives that have had ovarian cancer.) The genetics counselor said the risk due to my mutation would probably not be additive with my LCIS breast cancer risk. I don't know how she knew this, but I know with my slew of unusual conditions, I feel confident that no one really knows what my breast cancer risk is.

So I make my choice and live with that.

I'm happy I consulted several different doctors. Each gave me a window into a different view of my risk. I'm very grateful that my GP clued me in to how uncertain the risk numbers are. Now I know that the science of breast cancer prediction is in its infancy, and live with that uncertainty.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 06:05PM jessie123 wrote:

Ja9831 --- I also just had a lumpectomy for ILC and they also found LCIS. I'm using a teaching hospital and my surgeon didn't recommend at mastectomy. I'll see what the Oncologist says after my radiation is finished. Since we'll be monitored so closely won't they catch any possible tumor that develops at an early stage? If that happens then we can go for the mastectomy. I haven't gotten my 8 gene test back yet.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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May 6, 2019 04:35PM - edited May 6, 2019 05:16PM by Lea7777

To answer the question, "How important are second opinions?" I think it is a good idea for an LCIS diagnosis if the cost is not prohibitive. Since everything surrounding LCIS is a bit controversial and evolving, it can be helpful to get another perspective. I also think a second opinion is a good idea when surgery is involved, regardless of what type of surgery. A second opinion before surgery made a life changing difference in my family, nothing to do with breasts.

To respond to Northern Girl's comment on LCIS 2nd opinions, here is a summary of the opinions I have received for a diagnosis of LCIS, ADH, ALH at age 58.

Breast surgeon who did the excisional biopsy on one breast and then a year later on the other -- She is adamantly against PBMX. She thinks it is a good idea to take drugs if you want, but not insistent. She said she had done PBMX on one or two women with LCIS who had many family members with BC. This breast surgeon is 50 years old. Age is to give perspective of # of patients seen.

Second opinion breast surgeon, who I have seen after each biopsy -- She has done one PBMX on someone with LCIS who had 6 family members with BC. She would not recommend it but was not adamantly against it and indicated the 2% cumulative risk per year factor as something to consider in the decision. She recommended drugs and was more in favor of them than my primary breast surgeon. She is 40-ish years old. Age is to give perspective of # of patients seen.

My oncologist -- She was supportive of my initial decision, shortly after diagnosis, for PBMX but did not recommend one. When I asked her, "If I said to you that I want a PBMX, does it make you gasp and clutch your pearls?" I was speaking metaphorically. Her reply was absolutely not and that my diagnosis would allow a PBMX through insurance. She highly recommended trying the drugs instead and when one finally was tolerable and I said I was not going to do PBMX at this time, she said she was glad. She is 60 years old. Age is to give perspective of # of patients seen.

2nd opinion oncologist -- We discussed the diagnosis and she answered my questions. I presented my arguments for a PBMX and then said, "Now you sell me on NOT getting one so I hear the other side." She said, "I cannot talk you out of something you want to do." But she did not recommend a PBMX. She is 35-ish. She said she'd prescribe the drug that I was taking.

Major medical & cancer research center in North America -- oncologist. She recommended drugs and said years ago an LCIS diagnosis would mean she'd recommend a PBMX but that is not the case today. The reason, she said, is because research has shown the likelihood of cancer with LCIS is less than thought years ago; screening methods have improved; and drugs to reduce the risk are available/better. She was pleased I was taking the drugs. She is 45-ish.

Major medical & cancer research center in North America -- breast surgeon. "You could not find a surgeon here who would do a bilateral mastectomy on you for your diagnosis." This is a blunt statement, but overall she was not blunt or uncaring. She is 35-ish.

Most recent radiologist. Age 45-ish. He said if I were about 40 he might consider recommending a PBMX, but not now. Why? More years of risk at a younger age and breast cancers in older women (like me) are more "indolent." His word.

Nurse practicioner at a high risk breast clinic. Age 45-ish. She was rather non-committal on whether she'd recommend PBMX or not, but suggested doing surveillance for a year (along with drugs if I chose to) after the diagnosis and then making a decision. She cautioned against doing anything irreversible in the first year.

All of the above are professionals in the US.

I have an acquaintance who is a British radiologist in a breast clinic and reads mammograms. He said, "Don't do anything drastic and I would not recommend any of the drugs. Just do more screening."

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May 6, 2019 07:41PM jessie123 wrote:

Lea777--- I forgot - how was your LCIS diagnosed? Mine was found with my ILC during lumpectomy. It never showed up on ultrasound or MRI. Did yours show up on imaging? I may have asked you this question before, but my mind has become dull going through this cancer so if I've asked you I've already forgotten your answer. Thanks

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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May 7, 2019 04:05PM Lea7777 wrote:

Jessie123, MyLCIS was diagnosed after an excisional biopsy. Like you, it did not show up on ultrasound. Never on mammogram. My first MRI was after the LCIS diagnosis and after its removal. The MRI showed Birads 1, so no LCIS was visible. No Atypical Ductal Hyperplasia was visible either on MRI, but was removed not long after the MRI.

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