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Topic: Risk reduction

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

Posted on: Jan 2, 2020 01:02PM

petyab wrote:

Hi there, all.

Some background. I am 39. Mom was diagnosed with BC at 59. Genetic testing negative, but, did have VUS in BRCA 2. Under Tyrer Cuzick (version 8), my lifetime risk is 27 %.

I am meeting with a surgeon tomorrow to discuss risk reduction options. As I see it there are three: (1) prophylactic mas; (2) ovary removal; (3) taking tamoxifen.

I believe (1) will give me the highest risk reduction. (2) and (3) would likely only impact ER/PR positive BC and reduce by 40-50%.

I do try to eat fruits, veggies, avoid drinking and red meat, exercise. Had a daughter at 33 with limited breast feeding. Need to stop the pill.

Anyone in a similar situation? Any thoughts?

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Jan 2, 2020 05:07PM Dandoc wrote:

have you considered doing 1+3?

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Jan 2, 2020 05:09PM petyab wrote:

Yes. I know very little about prophylactic mas. I do know it may mean several surgeries with reconstruction. need more info.

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Jan 2, 2020 05:58PM Beesie wrote:

1+3? After prophylactic bilateral mastectomies, if no cancer has been found, while the risk of breast cancer has not been totally eliminated, in most cases the risk is low enough that the risks & side effects from a drug like Tamoxifen would actually be greater than the risk to develop breast cancer.

A PBMX is major surgery that will make life long changes to your body. While breasts can be reconstructed (don't know if you would opt for that), all natural breast & nipple sensation except for surface skin sensation is usually lost. There are several types of reconstruction, some more complicated and with longer recoveries than others. Sometimes reconstruction goes well and is relatively easy on the patient, and sometimes there are complications that can cause problems and more surgeries for months or even years. While a PBMX might be the right decision for you, you should do your homework before you even consider it.

Does your mother have the BRCA VUS or do you, or do you both (which would be the most significant situation)? Is there other breast, ovarian or prostate cancer in your family? Any other cancers? I assume that you talked to a genetic counsellor and the counsellor ran the Tyrer Cuzick model for you?

Without family history and the known presence of a genetic mutation, I'd think your mother's diagnosis, at age 59, is more likely to be sporadic than genetic. 85% - 90% of breast cancers are not genetic, and the average woman (who does not have a genetic mutation increasing her risk) faces her highest risk to develop breast cancer in her 60s and 70s. At 59, your mother was close enough to that age.

Unless you have more family and personal risk factors than you've mentioned, your risk level might not be much higher than average - the BRCA VUS of course being the big unknown. I understand that the Tyrer Cuzick model is considered more accurate than some risk models, but to my understanding, while risk models might be accurate over a large group of women, for any one person it could be much less accurate. A while back there was a lengthy discussion thread about that in the LCIS forum on this board.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 2, 2020 06:20PM - edited Jan 2, 2020 06:25PM by blah333

in regards to veggies carciferous vegetables are the best ie. broccoli, cauliflower, brussel sprouts. They help regulate estrogen which most cancers feed off of. I also read Vitamin D, K and Iodine can reduce cancer. But it was too late for me by the time I started doing research. My mom also had cancer at 50, mine was right behind hers at age 35 for me. I foolishly thought my different lifestyle and healthier choices would save me or delay it but it didn't. Tested negative for all the genes and variations available so far in 2017. Heredity can be a bitch...

I would definitely stop the pill or choose another form of BC. I certainly hope they are doing ultrasounds and mammo for you yearly. I have a 32 year old sister, that is all she is doing despite sister, mother, grandmother getting BC. My mothers sisters have not had BC but one did get a prophylactic mastectomy, tired of having to do so many biopsies.

Personally, I would just monitor it for now and lower your exposure to estrogen feeding things like birthcontrol. Hormonal drugs can have a lot of scary side effects. They might not even help you. Plenty of women here take them after BC and still have recurrences.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Feb 6, 2020 06:32PM - edited Feb 6, 2020 06:37PM by Utahmom

I am 52. Premenopausal. Had my only child at 43. Breastfeed for 26 months. After BF was over, I had a mammogram, showed all sorts of new Microcalcifications in my breasts. I had never had anything show up before. My breast density, which you have not mentioned but is very important to your numbers for Tyrer Cuzik model, is a Birads 4, extremely dense and confirmed by my mammos and MRI. Did biopsy on Right and had Usual Hyperplasia (mild) Benign Breast Disease along with something called PASH, which the doctor did not know much about.

I was always a health freak before my child was born. He is now 8. Even thoughI do not run everyday and lift weights to the extent that I previously did , I still eat pretty healthy, organic veggies, organic meat, etc. I have always done that. I am overweight for my height now with some love handles from my hormone levels I am sure, but it is not bad.

This past fall, mammograms showed tons of new microcalcs and some clusters in the Left breast. Biopsy now shows that I have ADH in the left breast. I have been studying and trying to figure out whether to just do lumpectomy, which must happen or, just have a PBMX.

My BS has been adamant that I have some serious changes occurring in my breasts and I need to be very careful in how I proceed as he confirms that DATA now shows that ADH comes back. So, I am really considering a PBMX

My mother has battled cancer 2 times; stage iv colon and stage iv melanoma.

I have 1 aunt and 2 1st cousins on my mom's side that had BC. One died as it came back in both breasts and metastasized.

1 have 1 aunt and 1 1st cousin on my Dad's side that had BC. So that is a total of 5 BCs.

We have oodles of other cancers on both sides, 3 colons, uterine, stomach, kidney, and more.

I tested negative for everything but have some kind of gene mutation called VHL. not a lot known about it, so I am not taking that into consideration for any decision that I make.

My numbers on Tyrer Cuzik model show 10 year risk of 26.5% but a lifetime of 70.5%.

I have a young friend about 36, I think, her mother died of BC, but she is not doing anything because she tested negative for the gene. My 1st cousin that died tested negative as well and her daughter who is about 34 is not doing anything except just normal mammograms.

I am more interested in you finding out more about that gene mutation that you have than anything else. Maybe get some consults with different genetic folks or people who run the high risk predictors. Find out as much as you can about it before you do anything. Then, once you have all the knowledge, you will be able to make the right decision for you and your life.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH

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