How many breast biopsies is enough?!

I thought prophylactic mastectomy immediately after the first biopsy. No more mammograms, no more call back EVERY year for diagnostic & ULS, no more biopsies. They found a small area of DCIS and my surgeons were happy to conform to my wishes. I had no problems with recovery from BMX, and although I hated the TEs, I had no problems recovering from the exchange surgery.

However you didn't mention your age. I expect it might make a difference if you're younger.

Yes - temporary expanders. I was 67 and had been called back for repeat mammograms and ultrasounds EVERY SINGLE TIME since I was 27. I was ready to be done with 40 years of suspense & angst.

My recovery was fairly easy For the BMX I paid attention to the rules and didn't do too much at first, but I was off pain meds in a week. And most important - I didn't look in the mirror as other women on BCO had recommended. For the exchange to implants, I took my grown son to the airport to go home 3 days after the surgery

You're 20 years younger so you many not be willing to give them up yet. It's a hard decision and very personal for each one of us.

I hear you Mimi. Its tough. I started out with LCIS on my first biopsy and excision in 2005. I've lost count how many biopsies I've had. Maybe 5 sets of (imaging,then biopsy, then excision)? I've had LCIS, ALH, DH (not ADH). I'm currently waiting on the results on another MRI breast biopsy.

Prophylactic mastectomy is obviously a very personal choice. How much do your breasts mean to you? Have you witnessed someone who has had breast cancer? Died of breast cancer? Had a mastectomy/mastectomies? Normally, I work just out of my head, going with just the statistics for my case. Unfortunately, we just don't know what your chances are of getting breast cancer. As I'm sure you know, some people who have PMs have regrets. Others have a great time (well, as great as it can be), and others not so much. We don't know what our experience will be.

For me, I think the worst was discovering how little they really know. I really, really hate being given 'misleading' (or false) information. It was only on my ~5th doctor visit, that my GP said 'we don't know', about 2 years after my first LCIS diagnosis. I'd rather be told the truth (We Don't Know) than to be told 'Your cancer is gone' by my oncologist (when I never had cancer to begin with, why wouldn't my oncologist realize that? Is that what she tells her invasive breast cancer patients after they had a lumpectomy?) or 'Your lifetime risk is between 10% and 60%, probably closer to 10%, but you'll have to go to the literature for better numbers.' Well, I had. I'd rather be told 'We don't know and this is why we don't know.'

Many people go to the worst case scenario. That's a protection mechanism.

After so many biopsies, no matter what my chances are of getting invasive breast cancer in the future, when will it be cheaper for insurance companies to OK prophylactic mastectomies rather than going through so many biopsies? (That's assuming I will still have health insurance.) Of course, they certainly won't do one if I don't want one, but its a hard choice.

We are all different. In my humble opinion, the only poor choice is to do nothing and never get followed in the future. If you wish to do that, that is completely your right.

Its so hard to know what to do.

"And when I had the stereotactic biopsy I passed out-so embarrassing and not sure why that happened.'

Well, we are all different, but I sure can tell you why my first sterotactic needle insertion was so upsetting. I was told before the biopsy, 'Now, you have to promise you won't move a muscle'. OK. He stuck in the needle and it was SO painful (pain score at least 8-9/10). This was before electronic Xrays, so they had to go out to develop the Xray before they went on. (This was MUCH slower than the present Xrays, so your breast was squished for MUCH longer.) They went in and out of the door which opened to a waiting area, and never announced themselves, so I never knew if it was a stranger and I was 'on display'. He looked at my face, and gave me a lidocaine shot, which hurt just as much as the needle. He NEVER asked me if I was in pain. I knew if I said anything I would cry, and if I cried I would move, and if I moved, they'd have to do it over.

I ended up getting a PTSD-like condition, and the next time I had a stereotactic biopsy, I instinctively pulled out of the mammogram paddles while they were compressed. (It was NOT a pre-planned, conscious decision.)

It is NOT YOUR FAULT. You may not be sure why you passed out. But I don't care if I was 1 out of 10,000 people, or you were 1 out of 10,000 people who have stereotactic biopsies. If you are in distress, COMPLAIN.

When I asked for a BUNCH of lidocaine on my next biopsies, I got it, and it was SO MUCH better.

Tamoxifen is a very personal choice too, of course. I chose to do tamoxifen x 5 years. We are all different, but the 'only' problem I had with it is I got BENIGN cervical growths or endometrial biopsies every 6 months or so while I was on it. For some/many people, tamoxifen 'calms down' the breasts. Other people find different experiences. One option about tamoxifen is if you find you can't tolerate it, you can stop it.

" >30% increased risk, I also have a 70% chance I will NOT get cancer."

I do not believe that is technically correct. It is POSSIBLE they might know that to some degree for a population of several thousand women. They do NOT know that is YOUR chance of getting breast cancer.

Its a matter of statistics.

Picking the numbers out of the air, there is a difference between knowing that 300 out of 1000 women will get breast cancer, and knowing that one single woman has a 30% chance of getting breast cancer. In the first case, we may be very confident that 300 out of 1000 women will get breast cancer, but they can have NO IDEA which 300 women in that group of 1000 will be. So they can have a Very Poor idea which particular individual woman will get breast cancer.

In this older paper

https://academic.oup.com/jnci/article/98/23/1673/2...

In other words, for 59% of the randomly selected pairs of women, the risk estimated for the woman who was diagnosed with breast cancer was higher than the risk estimated for the woman who was not. Unfortunately, for 41% of the pairs of women, the woman with breast cancer received a lower risk estimate than her cancer-free counterpart. Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much.

Mimi - there is so much genetic testing available now. You can get a better look at your risk profile if you have some of those done.

You didn't ask specifically, but I thought the Ultrasound biopsy was relatively easy. Mammograms are never comfortable.

In other words, the present breast cancer prediction models are not good for individual women.

I sure agree with MinusTwo: genetic testing is good! I found I had an unusual genetic mutation in the side of my family that had 1 case of breast cancer; not the side that had 4 cases (if you include cousins). So its not always on the side you expect. Genetic testing is MUCH cheaper than it was 10 or 20 years ago.

Tamoxifen can be used for both pre- and post-menopausal women. You don't want to be or get pregnant while you are on tamoxifen though.

I, too, found ultrasound the easiest, then MRI, then stereotactic. But in all cases, for me lidocaine is great, if they get it to the right spot. Some people don't have significant pain during a biopsy, others do. We are all different.

BTW, my MRI biopsy came back mild atypia. (I didn't get the pathology report yet, so I don't know any more details.) So it does NOT always get worse and worse!!

"Next question: does anyone know whether Tamoxifen protective effects continue after stop taking it and for how long those protective effects last? On the FB site a lady claiming to be an Onc Nurse tried to say that Tam only protects while a patient is taking it. I thought my provider had said that it cuts lifetime risk by 40%?"

To my understanding, the answer falls in-between. The benefit from Tamoxifen definitely continues for several years after you stop taking it, although at a declining rate. But unless you are 80 when you start taking it, it's not going to cut your lifetime risk by 40%.

I know that I've seen two studies that have looked at this. I'll dig around and see if I can find them.

Edited to add: Here is one study.

Tamoxifen for prevention of breast cancer: extended long- term follow-up of the IBIS-I breast cancer prevention trial https://www.thelancet.com/action/showPdf?pii=S1470-2045%2814%2971171-4

"At a median follow-up of 16 years (maximum follow-up, 22 years), breast cancers were reported in 251 patients (7%) in the tamoxifen group vs 350 (9.8%) in the placebo group, a highly significant 29% reduction in risk favoring tamoxifen (P < .0001). The greatest risk reduction was observed for invasive estrogen receptor–positive breast cancer, a highly significant 34% reduction (P < .0001) and ductal carcinoma in situ (35% risk reduction, P = .05). The effect on ductal carcinoma in situ was predominantly seen during the first 10 years of follow-up. However, tamoxifen did not protect against invasive estrogen receptor–negative breast cancer." This is a summary of this study from the ASCO Post https://ascopost.com/issues/january-25-2015/tamoxifen-prevention-of-breast-cancer-extends-more-than-16-years/ which is clearer than the summary in The Lancet article itself

Arlo41, wow, you have been through quite a bit indeed. We are glad, however, that they are doing good and continued screening. We understand how mentally and physically this all must be though. We're here for you, and please keep us posted.

Warmly,

The Mods