Tamoxifen vs. Preventative Mastectomy

dfranken,

Has your mother been tested for the BRCA genetic mutation?  If she tests positive, then it would be easy and quick to see you are positive too.  If you are, that would indicate a high breast cancer risk and might make the decision to have a mastectomy an easier one.

Secondly, I'm confused by the results of your last biopsy.  Did you have ADH and DCIS? ADH is a high risk condition.  DCIS is sometimes considered a pre-cancer but it is actually classifed as Stage 0 breast cancer and most experts (though not all) consider DCIS to be breast cancer.  DCIS is breast cancer that's been caught at the very earliest stage, while the cancer cells are still confined to the milk ducts and therefore cannot invade into your nodes or your body. Did you have an excisional (surgical) biopsy with clear margins? Normally DCIS is surgically removed and usually (and particularly with high grade DCIS) radiation is recommended, unless the surgical margins are very large.  High grade DCIS with narrow margins presents a high risk of recurrence, and 50% of recurrences are not caught until the cancer has progressed to become invasive. So the normal treatment is a lumpectomy + rads, or a mastectomy. 

My questions/comments are a bit off track from your question, but if you had DCIS and have not received adequate treatment, then there is a real urgency to getting this clarified and taking further action (which could be the mastectomy that you are considering).

Ah, that's helpful.  Thanks for the additional information.

It sounds as though you had a small area of ADH that might have been DCIS.  One thing you might want to consider is having the pathology slides re-read.... while pathology is a science, it is subjective and it can happen that two pathologists may see things differently. Since your slides showed something that was "somewhat unusual", a second opinion could be helpful.  When I was diagnosed, I decided to change hospitals and doctors.  The first thing they did was ask for the slides so that their pathologist could re-read them. In my case, the pathology results were confirmed but just the fact that they asked for the slides pointed out that it's not that uncommon to get differing opinions.

From the pathology report, it sounds as though you had a wide excision and therefore, wide margins. This is very important, particularly if you did have high grade DCIS and not ADH. ADH does not really need to be removed so having 'dirty' margins with ADH is not a problem, but if you have dirty margins with high grade DCIS, you run a high risk that it will develop into invasive breast cancer.

As for the BRCA results, given that your sister didn't test positive and your mother hasn't been tested, your negative is what's called an "uninformed negative".  If either your sister or mother tested positive and you were negative, then you'd know that the BRCA gene is in your family and caused their cancers, and you'd know that you don't carry the BRCA mutation. But with only negative results there's no way to know what's caused their cancers or whether you might have the same thing.  All you know is that you don't have any of the currently identified BRCA mutations however there are other genetic mutations out there that increase BC risk and it's believed that there are more BRCA mutations that are yet to be identified.  So even with a negative result, it's possible that there could be a genetic cause for the breast cancers in your family.  Or maybe not.  And that's why it's called an "uninformed negative".  

Now, about your question, my situation was quite similar to yours.  I had a fibroadenoma at 16 - and had a surgical biopsy for that - and then another at 20, which I had removed a few years later.  Over the years I had lots of call backs, lots of cysts and aspirations, and another biopsy which turned out to be fatty tissue. Everything related to having fibrocystic breasts, which is actually a very common condition; in most cases it doesn't increase BC risk. 60% of women have fibrocystic breasts.  Some have few symptoms, others like me have lots of symptoms.  It was only in my late 40s, when my mammogram showed suspicious calcifications, that I had a stereotactic biopsy that showed something that was actually of concern - ADH - and then the follow-up excisional biopsy showed lots of high grade DCIS and a very small area of invasive cancer.  At the same time I also had suspicious calcifications in my other breast.  That stereotactic biopsy was benign.  

Over the years, with all the lumps and callbacks and aspirations and biopsies, I often thought that a bilateral mastectomy might be a good option.  Get rid of the breasts and get some nice replacements. But when I was diagnosed and I was faced with needing to have the mastectomy, I found it to be very difficult.  My diagnosis was very early stage breast cancer but there was just too much DCIS to remove with a lumpectomy, so I had no choice about the mastectomy.  I made the decision to have a single mastectomy rather than a bilateral.  I just couldn't do them both.  As much as it had seemed like the simple solution, I realized that a mastectomy with reconstruction would not be easy or nearly as simple as I'd made it out to be in my mind.  And it hasn't been. There are long terms effects to having a MX.  You lose all natural sensation, including nipple sensation.  While you may regain skin sensation, there is no internal feeling and many women have permanent numbness.  Seven years out, I still get phantom itching. And every day when I look in the mirror or get into the shower, I am reminded that I had breast cancer. Instead of being over and done with my diagnosis, and worrying about breast cancer only when I go in for screenings, it's right there every day.  So every day I am grateful that I only had the one side done. I am very closely monitored with annual mammos and MRIs, alternating every 6 months, so I am comfortable that if I am diagnosed again it will be caught early.  I know there's no guarantee, but the odds are good. So far, over 7 years, I've had a couple of "6 month watch and waits" for new complex cysts, but nothing more concerning than that.

So for me, even though I had the same thoughts as you, when it came time to make the decision to do it, I just couldn't do it.  But there are many women here who are high risk who have decided to have prophylactic bilateral mastectomies.  For them it was the right decision and they are happy with their decision. It might very well be the right decision for you.  I'm sure that you will hear from a lot of other women who've made this decision and they will share their perspective and give you the other side of coin.

My best advice is to think this through thoroughly, weighing the pros and cons and considering what's ahead for you if you don't have the surgery, and what's ahead of you if you do. Then you'll know what's right for you to do. Whatever you decide, you don't want any surprises or regret.  

Good luck with your decision.  And if you decide to go for it, good luck finding a surgeon who is willing to operate.  It sounds like you will have to find someone new.  

With your family history, I would strongly encourage genetic counseling and BRCa testing. If you are BRCA positive and pre-menopausal, one option may be to have our ovaries removed. This has shown to reduce BC in bRCA+ women significantly. If you are BRCA+, MX and ovary removal are covered by most insuarance.

PS - how are your side effects on tamoxifen?  I hope minimal....

dfranken - Just wanted to let you know that if you choose to have a prophylatic BMX, you really are in control of your reconstruction options.  I would encourage you to do some additional research regarding implant vs. flap construction. Flap construction uses your own tissue from donor sites on your body depending on the amount of fat you have available.  PS's generally prefer to use stomach tissue first (similiar to a tummy tuck), but if you are lean, they can also take tissue from other areas on your body.  By doing a skin sparing/nipple sparing masectomy (if you want to keep your nipples), you can have a very realistic and asthetically pleasing outcome with either flaps or implants .  There's another group of doctors in the area you might want to look up that all do great work.  They are Dr. Marga Massey, and Dr. Kline and Dr. Craigie.  You can google them and to find their websites.

Good luck in whatever direction you decide to go with this big decision.       

Hi all - thought I would chime in here.  I don't get on much anymore as my PBMX was May 2010 - Jan. 2010 I was diagnoised with ALH - at age 49 - strong family history of breast cancer (mother BRCA negative).  I loved my surgeon who was the one that said I was a canidate for PBMX - I did not want to take Tamoxifen and was tired of numerous biopsies, call backs etc.  I had nipple sparing PBMX with saline implants - and have been really happy with the whole process - I was so tired of the constant worry - it was the right decision for me -wished I had done it sooner. 

  dfranken - let me know if you have any questions or would like to chat. 

Hugs, Valerie

Sorry, Dranken, I mistakenly thought you had triple negative breast cancer (tnbc), a high risk breast cancer with no targeted hormonal therapies. With tnbc standard chemo, surgery, and radiation. TNBC means no estrogen, progress terrine or HER2 receptors.

We have 3 times the likelihood of reoccurrence during the first three years after original diagnosis. That's why I want a bilateral mastectomy.



Peggy