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Topic: How many breast biopsies is enough?!

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

Posted on: Oct 3, 2020 04:47PM

Mimi820 wrote:

Hi ladies, hope all is well. Just had my 6 month follow up diagnostic mammogram for a follow up from having an stereotactic and then excisional biopsy where they removed ADH. Radiologist saw a new area of microcalcifications on my left side:( He told me I need a breast mri prior to biopsy. I have my follow up appt with my breast surgeon next week. I am just flat out confused how I will now have a fifth biopsy. (Had two for fibroadenomas last year and one over 10 years ago was benign). At what point do you start thinking about prophylactic mastectomy? I just don’t know how to go through this time after time. The stress is awful as you all know. I know the surgery is very serious. Anyone else out there with a similar experience? Or advice? Ty:

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Oct 3, 2020 05:09PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 3, 2020 05:19PM Mimi820 wrote:

MinusTwo,

Thank you for you reply. I am 47. How was your recovery? May I ask what if TE means temporary expanders?

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Oct 3, 2020 05:27PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 3, 2020 05:50PM Mimi820 wrote:

Thank you for your reply and guidance. I have been called back a few times prior to two years ago. Then it was 6 month follow ups which have led to biopsies each time. I couldn’t imagine doing this for 40 more years:( how awful that you had to go through that! I am so sorry.

I guess I need to take this next step and see what happens but to be honest I am growing weary and tired of the anxiety it provokes. I almost felt a panic attack type feeling just sitting in office after they needed more views. I knew in my gut they must’ve seen something. And when I had the stereotactic biopsy I passed out-so embarrassing and not sure why that happened. I am dreading having another one. The Dr had also mentioned prophylactic tamoxifen last May, however, I declined for right now. thank you again for your help and I wish you well (((hugs)))

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Oct 3, 2020 05:55PM - edited Oct 3, 2020 05:56PM by leaf

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.

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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Oct 3, 2020 06:07PM Mimi820 wrote:

leaf, thank you for reply. You really hit it in the nail. I also hate when doctors make assumptions. I had gone to an oncologist-was referee by breast surgeon- to discuss prophylactic tamoxifen. I was u sure if side effects and I haven’t started menopause yet. We decided to revisit this decision in one year. Now I wonder if it could help “prevent” future biopsies? We also discussed the lifetime risk percentage. The Dr explained it in a great way: even though I may have an >30% increased risk, I also have a 70% chance I will NOT get cancer. I focus on that instead of the first number.

I know I am not ready or wouldn’t request a prophylactic mastectomy at this time, but want to ask the Dr about the number of biopsies. Maybe it is what it is? Know what I mean? Maybe it’s a bad patch and I will get past it and have no more? All I know is I’m tired of this worry. But then I think it’s good to be proactive like you said and maybe these biopsies will help prevent a future problem? I am grateful for our technological advances in medicine and know they will not improve.

Thanks again for your support. IWish you well on your journey and pray your results are benign. (((Hugs)))


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Oct 3, 2020 06:08PM leaf wrote:

"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.

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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Oct 3, 2020 06:23PM Mimi820 wrote:

ughhh! That’s awful! I agree that you need to tell them how you feel and not hold it in. I don’t recall pain but the angle of my face and neck were stuck to the left in such an awkward position. I was definitely uncomfortable. It’s like you’re stuck clamped in that machine forever. I passed out while it was taking my biopsies:/ thought well I guess I just messed that up! Plus the room was small and warm. Maybe I was nervous because I had no idea what was going to happen. Looking back, perhaps if they explained the whole process maybe I would’ve felt better? Or maybe I ate a high carb lunch and my blood sugar dropped on top of nerves? Who knows. I’m dreading it But will hopefully be more prepared and know what to expect this time.

How was the mri guided biopsy

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Oct 3, 2020 06:25PM leaf wrote:

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.

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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Oct 3, 2020 07:01PM Mimi820 wrote:

yes, I agree it basically is a coin toss. I’m not sure if Doctors use these numbers to help make a patient feel better? Ultimately it’s in our hands to be proactive and do all that we can. I was nervous about the tamoxifen causing side effects such as issues with uterine thickening, etc. I have fibroids and was nervous of another thing to worry about. I may consider the tamoxifen at some point. Again, I am not menopausal maybe close though? thanks again for your valuable input. I really appreciate it:)

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Oct 3, 2020 08:26PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 3, 2020 09:03PM Mimi820 wrote:

I agree the ultrasound guided biopsy is much easier then the stereotactic biopsy- both are stressful of course, however, I didn’t do so well with the stereotactic for some reason

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Oct 4, 2020 10:44AM - edited Oct 8, 2020 03:46PM by leaf

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!!

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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Dec 31, 2020 08:21AM - edited Dec 31, 2020 08:24AM by KatePeony

I used to wonder the same thing. I had never had a biopsy before the one that found my cancer. However, due to family history (mom diagnosed at 37, grandmother diagnosed in her 60s and died of BC), extremely dense breasts, and many scares over the years, I always felt like a ticking time bomb. All genetic testing was negative, I lead a healthy lifestyle, and so I thought okay, I can handle scans every 6 months, and I'm doing everything I can to prevent BC. And yet, cancer found me - I was diagnosed at 42. When my cancer was found, I knew right away I'd have a double mastectomy, even though a simple lumpectomy would have been completely acceptable for my type and extent of cancer. I had read about prophylactic mastectomies for years and had long considered it. I can share that I have never regretted my decision, not once, not even a tiny bit. I feel free! No more mammograms, no more ultrasounds, no more hamster wheel. Of course, the risk isn't 0%, and I still see my breast surgeon and oncologist regularly for follow-up. But the feeling of freedom is priceless. Just wanted to weigh in in case this helps. Hindsight is 20/20, but if I could go back in time, I would have removed both breasts as soon as I stopped breastfeeding my second child had I known how tolerable surgery would be, how good the cosmetic result of reconstruction is and how free of constant worry I would feel. Best decision I ever made, just wish I'd made it before cancer showed up at my doorstep.

Kate, diagnosed at age 42 Dx 1/7/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Surgery 2/11/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/17/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 31, 2020 12:03PM Mimi820 wrote:

thank, Kate for your reply. I had posted this a little but ago...had the stereotactic biopsy by my surgeon and she missed the area:( so ended up having another one a month later, this time by a radiologist. Thankfully they were benign! Hyperplasia, columnar cell changes, etc. a bunch of other benign findings but still so stressful! I go back in April for my repeat mri and follow up mammo. I did see a new surgeon to get his opinion and he agreed I have had a lot of biopsies and my adh finding does increase my risk some. He wasn’t against a prophylactic mastectomy, but also said for me to take my time and think about it. He mentioned i may be a good candidate for a study-he called it robotic surgery (mastectomy). Of course I have researched it and am not sure if I would consider that or not. Love the idea thats it one incision under the arm (axillary). Then I believe immediate reconstruction. We did not get into specifics though.

For now I am just trying not to think too much about it-giving myself a break. I will see how my mri goes and then revisit the thought.

Thank you for your input-I really appreciate you taking the time to help me. I agree whole heartedly that it may be worth it for the fact that you don't have to worry about it again and again -which definitely takes a toll!

Wishing you a healthy and happy New Year!

Michelle

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Jan 5, 2021 08:48PM Kimc319 wrote:

I'm so sorry you have gone through multiple biopsies! The stress is awful! I too have had two biopsies plus lumpectomy all to come back with ADH. How many is too many? Do the biopsies increase risk of breast cancer? I have a large amount of scar tissue that they are constantly imaging as there's always an 'area of enhancement' and thankfully the areas (two) are always benign. Yet, all of this imaging is very stressful. I attempted the contrast enhanced mammogram but that was a bust because was only 2D so area of enhancement again found in scar tissue, couldn't be imaged successfully so ended up having MRI w/contrast anyway. Tried to get CEM in place of MRI but no go. I am not taking any preventative med at this point. I worry I am taking a gamble. Yet I also worry about side effects. I am on an ADH forum on facebook that can be helpful but also frustrating! 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%? It probably also depends on risk factor before started Tamoxifen as well. If anyone has heard anything specific I would be grateful if you could give input. We can be very thankful no cancer but it's anxiety provoking to feel like a ticking time-bomb as well! Thanks for letting me vent. God Bless all!

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Jan 5, 2021 10:18PM - edited Jan 5, 2021 10:54PM by Beesie

"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



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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