Would you seek a Prophylactic bilateral mastectomy if...?

Martha615

Would you consider a surgical solution if you were me? I don't have all my results back from genetic testing but this is my history:

My mother was dx'ed with IDC at age 52 but she neglected her screening and the tumour was large and easily seen with the naked eye, let alone a mammogram. I suspect she had IDC in her late 40's even. My only full sister had complicated breasts and opted for a PBMx after a dx of pleomorphic LCIS, age 48. My only half-sister (different mother, same father) was dx'ed with HER2+ at 55. Both maternal great aunts had bc sometimes in their 50's but I don't know when exactly. The remaining women are my mother's grandmother and my mother's sister, who did not have ever have breast cancer.

My full sister and I are BRCA negative but it isn't a "true negative" as we were the only ones tested (about 10 years ago). I only share 25% of my genes with my half-sister. Unfortunately, I am not aware of any genetic testing on her part.

I'm 55. I have class C dense breasts and lots of fibrocystic breast changes, including a 1.7cm simple cyst that is sometimes annoying. I am awaiting the results of a further panel of genetic tests (Color). My Gail score is 25% lifetime risk. My Tyrer Cruzick score is 35.9% lifetime risk.

As far as I am aware I have no hyperplasia, though I did have a biopsy a few years ago which was just very dense tissue that looked liked a mass on the ultrasound.

I've developed a real phobia about breast cancer. While I don't want to over-estimate my risk or act rashly, I also feel like a sitting duck.

I've been getting annual mammograms and ultrasounds. I do not qualify for annual MRIs. I feel as though I am simply waiting for the diagnosis and that I would be better off taking pro-active measures. I'm not keen on tamoxifen or aromatase inhibitors but would prefer a prophylactic surgery here in the UK, paid for by myself. No particular interest in reconstruction because I don't want further surgeries. While my onco surgeon is willing to do it based on my history and my wish not to go through cancer treatment, I have little (no) support from anyone close to me. They think I'd be putting myself through an unnecessary amputation and that I'm frankly nuts.

I am aware statistically that a surgical solution will be unlikely to significantly extend my life but I am somehow convinced that I will get breast cancer and end up with surgery anyway (plus all the cancer treatment).

Whatever I do I will live with uncertainty. My preference is to take action to prevent the disease but I am not so arrogant that I discount the opinions of those who feel I am over-estimating my risk. It's difficult to take a proactive measure when there is little support from those around you to do so. Even "simple" Mx carries its own risks, as do all surgeries. I am aware of that. I am also aware of mastectomy pain syndrome. A friend of mine suffers from this from only a lumpectomy.

Any thoughts from you very experienced people who know exactly what I'm talking about and have some words of wisdom for me?

Many thanks in advance!

Beesie

Whether I, or anyone else reading, would seek a prophylactic mastectomy in your situation really doesn't matter.

All that matters is what you want to do.

I realize why you are asking the question, but we are all very different in how we feel about our risk levels, how we feel about our bodies, how we would react to this type of prophylactic surgery. What's right for one person might be completely wrong for someone else in exactly the same situation. And whereas one person might deal emotionally and psychologically very well with a prophylactic BMX, another person might crash and have terrible difficulty adjusting.

You know yourself, and you know what's right for you. A lot of people look at these decisions and try to figure out which decision is best. My approach is the opposite. My suggestion is that you look at all the options and think about what could go wrong with each one. Then the question is: Knowing that you made a decision to get yourself into that situation (by either doing something or not doing something), which of these scenarios could you live with most easily? In which situation would you be least likely to regret your decision?

Since you've had BRCA testing, have you had a detailed discussion with a genetic counselor about your family history and your risk level? If not, I would suggest that.

Good luck with your decision.

farmerlucy

I might also try to find out what the “cash” price is for an MRI. At my center they bill several thousand dollars but the cash price is around a third of that. I had a PBM, but I had atypia (one pathologist called DCIS/LCIS, tiebreaker said ALH/ADH) and my risk was deemed to be 50% lifetime.

I’m not really sure what you mean about a “true negative” re:genetic testing. I think you’ll like the Color reports. Best of all their genetic counselors are super helpful. I know how onerous high risk screening is. I hope you find some answers.

Martha615

Thank you both for your responses. I think you're right, Beesie, that there is no one answer and no way to make the "right" decision. It's more about how to deal with the consequences of whatever decision is made. Here in the UK we more conservative about medical intervention. You wouldn't be offered a Mx on the NHS for anything other than invasive cancer, I imagine. That reflects the UK's own economics with regard to medical intervention but also a deeper philosophic position about the role of surgery and risk-reduction in our lives. If I go forward with a risk-reducing surgery I'd be very much an anomaly, which is okay, but may make it a bit harder the first days and weeks and months afterwards to cope with my discomfort and appearance. On the other hand, I feel that those of us with high risk are kind of living with the disease already in that it is present in our minds, so the relief would be welcome.

I am seeing two professionals about the surgery -- one a psychologist and, of course, the other a gene counsellor. I look forward to the gene counselling but I think the psychologist is just a routine screening that my surgeon requires.

I have been told many times that risk-reducing surgery of this type does not extend one's life. I dived into the studies and most of them are about contralateral surgery on the healthy breast, but I have found some on risk-reducing bilateral surgery. It's true we don't gain a great number of years by doing prophylactic surgery at my age (55) but then we also don't have to take aromatase inhibitors or other drugs that make us feel crap. We don't have to deal with potential breast cancer treatment, node dissection or lymphedema (always a chance of that, of course, even with PBMx). So, there is a quality of life to consider.

Farmerlucy, you ask about a "true negative". If your primary relative tests positive for a known mutation and you do not, it is called a "true negative" as it is assumed the mutation caused the primary relative's disease. Without that mutation, your risk is as it would be in the general population (assuming you don't have another known mutation or other risk factor). So, that is a "true negative". If your primary relative does not have a known gene or does not test, your own negative result isn't necessarily clearing you of a genetic predisposition within your family and so the result is not a "true negative". I hope that makes sense.

At your suggestion I did try to find out what an MRI costs at the clinic where I'm treated. I think it was something under $2000 anyway. I haven't actually been told yet, still working on it!

Thank you both for your thoughts. I really don't want to get bc so that I can then say "Oh, look, I was right! I really should have had that Pbmx!"

We'll see what the Color panel shows.

blah333

I used to think prophylactic mastectomies were kind of "stupid" - that is, young women who just have BRCA genes and getting mastectomies in their 20s.... seems so young. I don't think i would do that in my 30s either (I was diagnosed with DCIS at 35 though) but if I were in my 50s and high risk, I understand the inclination for it now. My 60yr old aunt just did this, but she also had to get biopsies somewhat often and was tired from the stress. So far it is only my grandmother, mother, and me who has had it. My mother's two sisters in their 60s have been fine. Strange. BUT ANYWAY ----- the "amputation" stinks but what is worse (to me) is the loss of lymph nodes. I am missing two and 9 months after my surgery I started having intermitent swelling (lymphedema). It's fairly uncomfortable... The UP SIDE of prophylactic mastectomy is that you would not have to endure this. I did not have recon.... recovery was easier than expected and not very painful. I would feel totally fine if it were not for these missing nodes and swollen nodes due to damage to the area in my armpit! You are still fairly young to have surgeries and be able to recover well. It's a tough call.. and it's unfortunate that the monitoring with ultrasound and mammogram is not enough to ease your mind. Anyway just wanted to chime in with the lymph node aspect.

Martha615

Thank you so much for this Blah333, you make a lot of sense.

I think the bottom line is that I want the stupid surgery and I just need to accept that it is an imperfect scenario and there are no "right" answers.

I've only had one biopsy so far but the worry and pain was pretty fierce. I will certainly be having to have more in the future and our risk only goes up, not down, as we age.

I am SO sorry about your troubles from only having had 2 nodes taken!

I worry a little about chronic pain after surgery (estimated at 30% even without reconstruction) but I think there may be some things I can do to lower that risk and the pain (usually) drops after 15 months or so. Many experience very little pain, of course.

Thank you again for your thoughtful response.

Martha615

Interestingly, I had thought that my half-sister had triple negative breast cancer. Reviewing an email from her some years ago I see I was incorrect. Her bc was HER2+, which is not considered an hereditary risk. It's an unfortunate mutation after conception. Having said that, the hazard risk for a primary with HER2+ appears to be 1.56 so it isn't worth entirely discounting.

Denise-G

I had one breast removed because of breast cancer. At the time, I was a breast cancer novice and never even knew anyone who had BC.

But I went through it, then my mom and sister were diagnosed all within 3 years. My sister and I had a Chek 2 genetic mutation and they

highly suggested I have a prophylactic mastectomy on my remaining breast.

HOWEVER, the very credentialed surgeon disagreed with that because she was concerned about my risks with side effects and lymphedema

which i already have on the "bad" side. Plus, I have heart issues etc.

I just met with my Onc yesterday. The standard of care for women who have a genetic factor in breast cancer is a mammogram one year and MRI the next. For me, I would prefer that over the prophylactic Mx because I've had enough. That is how I FEEL.

But my sister had an original lumpectomy after her BC then could not stand the stress - she had dense breast tissue and hated mammograms and MRIs. She had a double Mastectomy.

So it goes back to what you know you can handle....no easy answers.

AliceBastable

Just as a devil's advocate, here's some non-breast scenarios to ponder:

I have arthritis in several joints and have had a left hip replacement. Someday, my right knee will need one. So, should I have my healthy left knee replaced too, just in case? Or a wrist? My shoulder?

I also had kidney cancer last year and had a radical nephrectomy. I sure hope I don't get cancer in my remaining kidney. Should I have it removed... Oh wait. I can't do that. Seriously. I can't.

Martha615

Alice, are you being funny? It's not funny to me. It's just annoying.

JoE777

I personally would have trouble removing a clean breast as preventive. I'm metastatic to the bone and lungsand stillhave clean breasts and lymph nodes. The exact opposite of how I thought things would go down. I would have to relie heavily on my medical teams rational also.

AliceBastable

Martha615, no, as I specifically stated, I was playing devil's advocate just to present the non-mastectomy point of view. I've had three cancers; you really think I don't know how serious it can be?

Martha615

JoE777, I am so sorry about your situation. I know that someone without the level of disease you are experiencing can't imagine what that would be like. Indeed, it is very difficult to remove a breast without certainty that by doing so we will benefit greatly, or at least suffer less. The trouble with "prophylactic" surgery (an awful term) is that it requires exactly that. Once we have breast cancer -- or rather, once it metastasizes, there is less argument for removing a breast. Endocrine therapy, chemotherapy and the fact that the primary tumour has already done its damage spread to another location are a few. My mother had so many nodes taken -- I can't recall the number now but a lot. All were clear. She had mets to the liver anyway. Early 50s. Very sad.

Of course, you know all this, and much more than I know, besides.

I am sorry about your experience. I wish something more could be done about this disease. In my case, I'm waiting for a genetics panel and thinking hard about whether I really care that much about having breasts. Because I don't. Maybe I ought to; maybe other women do care. For me, they are often a source of worry and irritation (since the onset of menopause the cysts are almost always a little painful). I am aware that chronic post-mastectomy pain syndrome can hurt a hell of a lot more, however. Also, that a person like you hurts all the time, and so unjustly. I wish you the very best and, again, am sorry about your condition.

Martha615

Denise G,

I am so sorry to hear of so much cancer all at once in your family. I also understand wanting to keep the healthy breast. I would never challenge any woman's desire to do so.

I don't know much about lymphedema except that it is often associated with the removal of nodes and has a much lower incidence in when no nodes are taken. Having said that, your doctor is aware of your condition and able to evaluate your situation with clarity.

Thank you so much or your thoughts. I really appreciate it.

Salamandra

I think that if you've read through Beesie's amazing post about lumpectomy and mastectomy considerations, you've informed yourself about the risks and benefits, and your heart wants a mastectomy, you should do a mastectomy.

We women have all different kinds of relationships with our bodies, with our breasts, with illness. Hearing about others' experiences can be helpful but it only takes you so far.

I suspected I would have a genetic mutation before I got genetic testing ten years ago. I suspected the doctor would recommend mastectomy to me (completely unfounded) when I was diagnosed this year. At both times I thought I had mentally and emotionally prepared myself to lose my breasts. And maybe I had done as much as a I could. But both times, when the doctor said I could keep them without additional risk, what I felt was great relief. That tells me that my heart didn't want a mastectomy if it could be avoided. Even if it meant extra stress and hassle with screening.

The science around breast cancer is pretty good now but it is not perfect. We still have to make hard choices with uncertain outcomes, that we will pay for one way or another. I think that the head plays a vital role in gathering and evaluating information and evidence. But ultimately it has to be the heart's decision. Because your whole body has to live with the outcome.

I guess that a prophylactic mastectomy is probably a bigger deal than a prophylactic tonsillectomy or appendectomy. But to be honest, I wonder how much surgically and medically the risks differ from something like a face lift or facial cosmetic surgery - like, an elective operation directly on a person's face! That many people do voluntarily. And there is so much more *health* justification for mastectomy.

Anyway I guess that is all kind of a long way of saying, use your brain but listen to your heart.

Martha615

How beautifully expressed, Salamandra.

Beesie

Thank you, Salamandra!

Martha, in case you have not yet seen it, here is a link to the post that Salamandra referenced:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

KBeee

Ultimately you need to do what YOU feel is best. I do not have BRCA, but have a VUS in the CHEK2 gene. My mom had breast cancer. Though her mom did not, her dad had multiple cancers, as did his siblings and his father, so it does not always have to come from the female side of the family. My mom had UMX in 1992 for her BC. She had BC in the contralateral breast 2 years ago. You cannot compare a mastectomy to a knee replacement because going without a knee replacement does not prevent you from getting cancer. You cannot compare it to taking out a kidney because you do not need breasts to live. Neither is a realistic or fair comparison.

The flip side: once you have BMX, there are no more mammograms, ultrasounds, etc unless there are new symptoms. While this may sound great, it can be very stressful because anatomy can be lumpy and bumpy. I know a couple women who are CHEK2 positive who opted for lumpectomy and one who opted for UMX. They are all doing well and do appreciate the yearly screening.

There is no right or wrong answer. My family history was only one small piece of what led to my decision. The only right decision is the one that feels right to YOU. When I had to make my decision, I hand wrote a chart with the pros and cons for me of every choice. This helped clarify things.

Martha615

KBeee, thank you for that thoughtful post. You are so right about what you've said.

Interestingly, I just spoke to the geneticist who arranged for my Color genetics testing. I don't know how Color compares to other testing, but apparently I did not have any known mutations associated with breast cancer. This doesn't entirely surprise me, though it isn't all that helpful as I don't know if those with breast cancer in my family carry any mutations, so my *not* carrying them may mean little. The geneticist told me that it is estimated that 10% of breast cancers are from genes not yet known to us.

Having really annoying fibrocystic breasts may mean I have a different relationship to my breasts than women have pain-free breasts. It's difficult to feel everything is fine when it hurts. For example, I have a 1.7 cm cyst that I was convinced was pathological (the ultrasound suggests otherwise, just a simple fluid-filled cyst that is located right under my nipple) and so I am very, very familiar with the lumps/bumps, good-lord-what-is-this scenario I might have post bmx.

The truth is no doctor has suggested to me anything other than surveillance, adding an annual MRI into the mix. I hate surveillance. It feels like being a sitting duck. I do understand the rationale, however.

KBeee

I also had very fibrotic breasts which were hard to interpret and tons of lumps prior to my mastectomy...and I had tiny breasts! My scar tissue post mastectomy is different than the breast lumps prior to my mastectomy. I already had one lump which needed to be surgically biopsied prior to my BC diagnosis, so I do understand the stress of fibrous breasts. I still get them checked, but my cancerous one felt exactly like my cancerous lump the first time, and felt different than any other scar tissue since then. In addition to my family history, I cannot help but wonder if there were environmental factors. There were 5 girls on my street growing up. 4 have had breast cancer prior to age 50, and one is being followed for odd lumps and bumps. As I said, a lot went into my decision, but whatever you decide, do not look back and ever ask "what if". You made the best decision for YOU, and that is all any of us can do.

bruinjamie21

I feel like a sitting duck too as I said in my post the other day. I just can't imagine the thought of 40+ more years of “scares" every 6 months IF there's something I can proactively do about it. And I'm truly struggling with the decision because it does seem EXTREME to rid myself of breasts that at the moment may be perfectly healthy (pending an upcoming MRI biopsy). But I also have 3 little boys, 6, 4, and 1 that I want to be around for

Lezza13

I think waiting for the MRI biopsy results is tough but those results might give you the answer you need to have the procedure. I had dense breasts even more after having my twins years ago. Then I went through several scares of biopsies on my left breast. I was diagnosed at the six month checkup on yet another one in my left breast. My right one had a i cm cancer. I had three positive lymph nodes so both breasts were gone. I was tired of the repeated scares and am happy with my decision. I tried reconstruction but it was not for me.

It is of course your decision. I am sure you will choose however you feel most comfortable with. Best of luck,

Dm39

Hi Martha615. I had a double mastectomy in 2018. One side had multiple tumors. The other side had multiple cysts. The cancer returned less than a year after my mastectomy. I believe this is because they did a needle biopsy and it brought the cancer cells to the skin. So even after my mastectomy I have been dealing with this cancer again. A mastectomy can always be done. You can't ever go back once you have made that choice. I am not a fan of women having mastectomies based on genetic testing. My testing came back negative even with my family history. Looking back. I should have done lumpectomy and radiation. I was trying to save myself the headache of multiple surgeries, treatment, and recurrence. In the end I've already had 5 surgeries, will undergo chemotherapy and radiation, and have at least two more surgeries to go. Since you have a family history of cancer. Let your doctor know its a concern for you and be proactive with your testing. Do not do mammogram. They do not show most tumors and cause unnecessary radiation to the body which can cause cancer. Do thermal imaging regularly. Work on preventive care with nutrition and exercise. I hope this helps. In the end it is your choice.