No disease, strong family history, considering pbmx
Ladies, I am hoping you can help me think through my situation.
My recent mammogram indicated a 1cm mass, bi-rad 4. MRI screening looked benign (bi-rad 2), but I had a Saros vaccuum-assisted core biopsy. Multiple samples indicated benign, somewhat fibrous tissue, no abnormality.
My family history is a mother with breast cancer in her early 50's. My sister did not receive a cancer diagnosis but by age 48 had significant changes in her breasts, including atypical hyperplasia and LCIS with some focal areas of pleomorphism, and elected for a prophylactic bmx. Aunt on mother's side did not develop bc in her lifetime. No history available on father's side.
Both my sister and I are negative for BRCA1 and BRCA2. We have no genetic testing information on our mother, who died.
I know this sounds insane, as my breasts appear to be perfectly "normal", and are not very dense (they are on the high side of medium density), but I am considering a prophylactic BMX. I understand I would not be a candidate for tamoxifen as I already have uterine fibroids.
As you would imagine, both the radiographer and the breast surgeon I spoke to said I really ought to just be screened yearly. I don't know how comfortable I am with that. I feel like I am being told, "Come back next year and we'll see if you have cancer yet." I do agree this is a reasonable approach, however. Until this recent change seen on the mammo, I was being screened yearly (or every 18 months on average, I suppose).
Anyway, if you have time to weigh in on this question I would be grateful. I know that even pmbx can result in chronic pain and/or lymphedema. I lead an athletic, outdoor life and would be concerned about range of motion, pain, and lymphedema, of course. But this would be just as true if I wait for a dx and my chance for the benefits of a PBMX are gone.
Other medical history: 56kg, 50 years old, hypothyroidism, asymptomatic medium sized uterine fibroids
Comments
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Since your Mom was diagnosed late in life and you are 50 and have no breast abnormality you probably are not very high risk, probably much closer to average risk. Most cases of breast cancer, especially late ones are spontaneous, not genetic. As to your sister's LCIS, the vast majority of women with it do not go on to develop cancer. It would be different if your mom had been diagnosed at 30. -
Hi Martha,
The fear of developing bc can be strong. Family history is of concern but in your case, what is known doesn't present a "strong" family history. Developing bc in ones early 50's doesn't point to a genetic mutation as it is developing bc before age 50 that is suggestive of a genetic mutation. I'm assuming that since you had BRCA testing, you've seen a genetic counselor. What did they say about your risk? Glad that you're aware of the possible side effects of mastectomy. Don't forget the risks associated with surgery itself. Lastly, since you gave your weight in kilos, I'm guessing you're not from the US. Will doctors in your country perform the surgery on healthy breasts with no medical reason to presume you are high risk? Would insurance cover it? I know you are very worried but with what is known, you are really not the ticking time bomb you think you are. Good monitoring seems like a reasonable course of action. Take care. -
I would wait it out with yearly screenings. Can you see your doctor and then get a script for a mammo for six months later....that way even though it would be a year between imagining screening, you could still talk to and see someone every six months? -
I, personally, would not do a pbmx in your case. We are all essentially going back for our next mammogram to see if there is cancer. Having a mastectomy is not easy and it is major changes to your body. I have had a uni MX and currently am currently having the healthy breast monitored every 6 months because of high risk biopsies there. I will not do a MX on this side unless I get cancer there. The reason is because an MX and reconstruction have been a huge ordeal that I am still having surgeries for 3 years later. I would suggest that you really inform yourself of what is involved before you make that kind of decision. Breast cancer caught very early is very curable. Maybe you can have find a doc that sees you every 6 months and does MRIs once a year. MRIs catch a lot more breast cancer than mammograms. -
Hi again and thank you for your replies!
I can't get 6 month screening, unfortunately. They feel yearly is still fine for me. Such is the nature of bc that you can go from a birad 4 on a mammogram to, "You are fine, please go away" inside of a couple of weeks. I hope that is encouraging for those of you who may be waiting for results.
They consider this to be nothing, but I am going to query the pathologist directly as it could not have been absolutely nothing, surely.
Exbrnxgl, you are right, I am not living in the US. I am in the UK. I have a breast surgeon who is supposed to be very good and who would do the surgery, but he's not that keen on doing it. He thinks I should get further genetic testing and yearly mammograms. Sensible man. I would have to pay for it myself as clearly insurance will not pay unless you have a very good reason. Simple mastectomy would be expensive but not anything compared to reconstruction, which I would not be getting.
I had my brca1/2 done, but never saw a genetic counsellor, just an oncologist who ordered the test. There are other genetic tests you can do, of course.
I have talked to medical people who consider me only an elevated risk and others who consider me a very high risk. So hard to know. I do appreciate all of your thoughts. This forum a remarkable place. -
You have to remember that a Birads 4 starts at about 2% chance of cancer on up to about 20%, so rightly, most women with a 4 go to "no big deal" in a few weeks, because most of the time that is truly the case. The vast majority of Birads 4 biopsies are benign. -
Martha,
If you have access to a genetic counselor, I would highly recommend a visit. Beside genetic testing, they work with you to construct an extensive family medical history and look at other mitigating factors such as ethnicity (some ethnic groups have higher incidences of certain genetic mutations). They can then put that altogether and give you a clearer picture of risk based on family history which may help ease your mind or, if it turns out that you are higher risk than thought, allow you to make a devision about prophy bmx that your doctors would support. -
I don't think a lot of people realize just what a huge surgery a MX is. I will tell you that mine changed me very much. I have some level of discomfort every day and I am 2 years out. I don't think I will ever be able to do things like pushups again or anything else that involves the pec muscles-even opening a jar can be tough. There are yoga poses I cannot do and running for me is very difficult. The implants are just not comfortable. I also developed Fibromyalgia and I strongly believe this is from the surgery as does my rheumatologist. This comes with horrible migraines and body aches which I never had before. The MXs were my only treatment so its not like any of this is from chemo, tamox, etc.
I am all for decreasing the worry believe me. I actually had a PMX on my right breast 3 months after the MX for cancer because I couldn't handle the worry. So I do see where you are coming from. Just don't go into this thinking you will be able to lead your life as before because chances are good that physical limitations will stop you from that. I am not saying you can't do a lot still but if you are someone who is very physically active you probably will see a difference.
Also the amount of difficulty that you encounter may have a lot to do with your reconstruction. Maybe if you choose not to do anything it will be a lot easier to do activities as you are used to.
for reference I am 46 years old and average height and weight. -
Mallory,
OP has already stated that she is not interested in recon if she were to have pbmx. -
Hi Martha,
I had a mastectomy on my right side only; I agree with Mallory that it is a more extensive surgery than many people think & the possible complications while not all that common do occur - seromas, infection, long-term pain, loss of sensation, etc.
Given what you have said, I would consider getting further genetic counseling before even considering a bmx. The greatest risk factor in BC is being female & so half of the population has that risk - a family history of bc alone doesn't in and of itself increase the odds that much. You have to make your own decision based on your own level of 'worry' of course. If you are so fearful of getting bc that it is interfering with your life in a major way, then you are going to proceed with the bmx (and ultimately you will arrive at that answer regardless of what any tests say), but so far it seems that everybody that you have consulted with is saying that the level of increased risk (and you may not have really any level of increased risk) isn't enough to warrant an extreme measure, although, I can understand that watching your mother go through cancer would certainly make anybody have real concerns.
Maybe you could see a genetic counselor & then if a bmx is not indicated, put yourself on a very strict regime of self-examinations (at least once a month without fail) and also look into foods that are cancer preventatives (I'm not big into 'alternative treatments' but there are some preventative dietary measures that are recommended ). That with yearly screening might help make you feel like you are being proactive without having the bmx (maybe?). -
I would definitely encourage you to seek genetic counseling. They are genetic experts, and the best at mapping out your family pedigree, your own personal history, and providing your personal risk assessment. One family member, even a mother, with breast cancer after 50 is not in itself indicative of strong family history. Around 90% of breast cancers ARE sporadic and certainly not all of their relations are high risk. Even without reconstruction, a mastectomy is a significant endeavour, with not only physical implications and risks, but potentially mental and emotional ones as well. My own breast surgeon has told me he does get women of average risk in his office asking for PBMX based on a huge overestimation of their risk, or fear due to a relative's cancer, and he says he will not provide surgery in those cases without a bona-fide high risk assessment from a genetics expert....the harm is not outweighed by their risk in those cases. Also, as a PBMX does not offer 100% risk reduction, he does not believe a PBMX is a good idea in women of lower to moderate risk to begin with as the "effective" reduction is not worth the risks of surgery and complications.
I can speak as someone who is currently in process of the work up to a PBMX that is also a very athletic and active person (train/am active 12-15 hours a week) that I am pretty anxious about it and the potential consequences, but I do have a very strong family history of aggressive pre-menopausal BC. Meaning multiple family members, and a direct maternal line for at least 3 generations. For me, the risk reduction benefits are important. But it was only through genetic counseling, and a true understanding of my own risk, that I really was able to make a well-informed, logical (for me), rather than fear-based, decision on this.
You really need to talk to a genetics expert, not just any medical provider....even if they are an oncologist. There can be a tendency sometimes by people...and even sometimes their medical providers....to overestimate their true risk and this is why talking to a genetics expert is important. You may indeed be higher risk, but this determination should not be based on your mother's post-menopausal cancer (or your sister's LCIS) alone. -
Thanks again to everyone who has posted. I think a genetics counselor is a great idea. It sounds like my next step -- thank you!
My mother was in her early 50's when diagnosed but she had been ignoring obvious symptoms for a very long time. So, had she received regular mammograms she may very well have been my age (50) or younger when she was dx'ed. She presented with a 4cm visible tumor, so that may have taken years to get that way. My sister's LCIS was, itself, not cancer but there were areas that were pleomorphic, and she also had atypical lobular hyperlasia, and so many biopsies by age 48 that she received a pbmx.
Of course, I am now a broccoli-eating non-drinker with green tea infusions and DIM on order, but you can only do so much with all that, lol!
I will look for a genetics counsellor and continue to read this board. Again, thank you all so much for your thoughts. I am listening!! -
Hi Martha, I am only being monitored yearly by mammogram, and by my insistence, sonogram (ultrasound). I am having an extra mammo done next week on the left breast (the non-DCIS breast) because I also had a benign biopsy six months ago on that side. In the US, there is a protocol to follow that one side for six months after the biopsy, just be sure everything is OK. At the same time, there is research to suggest that it is very unlikely that anything would be found in those follow-ups to benign results, and there is a recommendation to end that protocol. If you peruse these threads, of course, you will read about the exception to the rule. Once the follow-up one-sided mammo is done, I go back to yearly mammos, which is basically the same monitoring you are getting, without having a pre-existing diagnosis. It's the most I ever did when I'd had a previous dx of atypical ductal and lobular hyperplasia, similar to your sister (with the same family history as you). My mother also had post-menopausal bc. I never considered myself to have much of a family history, although I did get the BRCA testing after my diagnosis due to my ethnic heritage, which did put me at moderately elevated risk for a positive brca result (but it was negative). I fought hard to avoid a mastectomy, even though it took three lumpectomy surgeries to get clean margins. I was very concerned about all of those potential side effects stated by earlier posters.
I concur with everyone. You should get a thorough genetic consultation, and then try to base your decision on the information presented to you. If you still have overwhelming anxiety, then this might be the way to go. Just realize that mastectomies don't reduce the risk to zero, so you might very well continue to worry, even after the mastectomy is completed. And on top of that, you might have risks for other diseases that you don't know about. Breast cancer is really serious and really scary, and there is definitely no safe place, once one has a diagnosis of invasive breast cancer. Even early stage disease (excluding DCIS) puts one at risk for spread of the disease to the rest of the body. I've learned a lot and felt very deeply for the women on these boards. At the same time, you could be more at risk for something else. I just want to raise one additional point, and that is, that they have studied women who have had negative biopsies (benign) and found that the anxiety this brings up can often last for up to three years, so your fears are common and understandable. It may take that long to feel a bit more stable and comfortable. That study was cited on this website, so maybe you can track it down.
I just read your recent post (it crossed with mine). Did your mother die of bc? I can understand how that can have a very strong impact on a decision. My mother had locally advanced disease (large tumor, node involvement). So far, she has survived it (28 years). I think if you see someone die of it, that has a strong impact on one's decision. -
Thank you, Ballet12 -- such good information. I am sorry you did get DCIS, though I am glad it was caught so early and is so treatable.
I ought to add here that my mother did die of breast cancer, yes. Both my maternal great aunts also had breast cancer in their 50's. One died of it; the other did not. -
Well, whether one dies of bc, doesn't have to do with whether it's genetic or not, but it can certainly affect one's view of the disease and one's anxiety about it. After I say this, someone is surely going to post that certain aggressive cancers, are associated, for example with brca 1, such as triple negative. At the same time, that's not the point I'm trying to make with you. It's just very traumatic to watch someone become ill and die of this disease. I hope that you will be at peace with whatever you ultimately decide. -
Hi Martha - Forgive me if this has already been addressed. I have UT fibroids also and no one mentioned that Tamoxifen is contraindicated for that to me. When they discovered ADH and ALH and recommended Tamoxifen I also had them then, as I do now post dx (I am taking Tamoxifen). My breasts were extremely dense and NOTHING could be seen in them. If I had known that many times Tamoxifen makes breast imaging easier, I may have considered it.I did the high risk screening for 20 years. I know how oppressive it can be. I also knew if anything came along I would have the PBM. My goal was to prevent cancer, not catch it early. I guess it all comes down to risk tolerance. Also, my BS was not too keen on doing the PBM with ADH, ALH, and a high risk family, but after the GC said I was 50% risk, he agreed. You may have trouble finding a BS to do it without tissue change.
Good luck with your decision. You have a wonderful asset in your lovely sister.
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Sorry - I just read where you said your BS would do it.
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Farmerlucyd, thank you so much for your post. Forgive me if I am incorrect, but looking at the dates on your surgeries it appeared you had IDC diagnosed after the PBMX, which meant you had an undetected stage 1 cancer. What awfully bad luck. I had a look at your notes about your condition and it seems like you had been dx'ed with atypical hyperplasia (both ductal and lobular) a year previous to the bmx. Was this at the age of 50?
Like me, you have only so much you can work with by means of genetic assessment. Your mother was incredibly young when she got bc -- I am so sorry. I am working with a totally unknown information on my paternal side. He had no sisters. His mother died before my parents were married.
About fibroids (aren't they lovely...not), you are absolutely correct that one can still take tamoxifen. It isn't contraindicated as such, but there is a risk that tamoxifen (or similar drug) may cause the fibroids to grow or new ones to develop. Lots more information is available on this but if your fibroids are NOT growing, then terrific. It isn't as though the darn things are subtle. Here's a little article that I read: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2482152/
Every biopsy makes the breast harder to read though I am surprised your MRI seemed normal. Fewer false negatives on that than on the mammogram, of course.
Yes, my sister is a fountain of knowledge! I was around through her pbmx and she did remarkably well. She continues to help those who find themselves on boards like these, including me.
Part of my worry is that in England I suspect we are (generally) less cautious than in America about biopsies and less likely to find precancerous changes. I am going to talk to the pathologist and make sure I know everything about this particular tissue they took last week.
Again, thanks so much for the post. -
Oh, I just wanted to add another thing. While I know my mother may have been post-menopausal at the time of diagnosis, she certainly had symptoms she was ignoring that went years back and may indeed have been premenopausal. At age 50 I am still premenopausal.
Of course, while this is nothing like the risk of someone whose mother or sister had breast cancer well under menopause, I believe my risk is at least "moderate".
I do understand that 90% of cancers are not apparently genetically related. However, it is one of those statistics that troubles me. Imagine coming from a family of predominant men, like my father who had no sisters. There is no data there. If a woman is adopted there is no data. In the case of no data it has to be categorised that there is no genetic reason for a case of breast cancer, but of course this is an assumption. I am very open to arguments to the contrary and extremely happy to be proven wrong on this! Thank you! -
We found the ALH/ADH in November 2011, and that pushed me into the PBM in Feb 2012. One could say I was incredibly lucky or incredibly unlucky. Either way it is all good now. BUT - as you said your option to have a PBM is gone once they discover something. I will always have the concern about recurrence. If I'd had it done two years earlier, maybe not (I know it was probably there anyway, but they may not have found it.) (Oh ignorance, sometimes you are bliss.) I was 51 and premenopausal.
I do agree about the biopsies and making things harder to read. To be perfectly honest, and this sounds rather extreme, but another big reason I decided on the PBM was that I was going broke paying for all the screening, $5K out of pocket for an excisional in 2009, another $5K out of pocket for another excisional in 2011, plus at least another $1000 per year to my regular screener who was deemed to be so good, she did not accept my blue ribbon insurance so I had to pay for all of it.
You can have your pathology sent to Johns Hopkins for a second opinion http://pathology.jhu.edu/department/services/secondopinion.cfm When I was considering it the cost was like $200.
You sister was so much help to me when I was making my decision about recon/norecon. I did not want it, but my husband and daughter really pushed for it, so I decided to do it. It was rough, but in hindsight I'm glad I did it.
Just want to say "I hear you loud and clear." Take care! Hugs to you my new friend.
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Oh and one more thing. A month after I started Tamoxifen, my periods stopped. This of course could be regular menopause (I was 52), but if you look at the Tamoxifen threads this is not at all uncommon. That alone made taking Tamoxifen worth it to me! Woo hoo!
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Hi again Martha!
It is true that there are people with unknown history due to adoption, or strong male lines. Or just small families. Sometimes BRCA+ for example hide in these kinds of families. But the truth is there is always an unknown to anything. I have a small maternal family. I have no idea that if any of the women survived past 60 they might not have died of a heart attack. Maybe heart disease is something that I might be prone to....but I have no idea. I can only go by what is known. In my maternal family there are not many women (I have no aunts, no great-aunts that survived past infancy, on other hand I have 4 maternal uncles) and all except my mother died of their BC. The oldest person alive in my maternal family right now is 55, so who knows what the future holds. My father's side is male dominated...no women aside from grandmother and great-grandmothers but my grandmother was adopted, I do have 5 uncles and a few great-uncles who survived young adulthood. Despite horribly unhealthy lifestyles amongst most of them the only cancer there is colon in my grandfather in his 70s.
Your mother likely did have cancer growing for many years. This is one limitation with using age of dx. Most cancers take several years to develop and be large enough to detectable. Only in pretty specific cases (IBC, some triple-negative cancers) does cancer seem to spread/grow very fast. Autopsies done on women who died of other causes have found undiagnosed pre-cancerous changes are not uncommon. They are still researching why in some women these pre-cancerous changes never develop further...or even regress...and why in others it develops into cancer. Very important research for sure!
Your risk is usually going to be assessed as slightly elevated for having a first degree relative (mother) with BC. Sometimes I see it as "double base risk" (note...this is not double the average risk of 12%...it may mean you still fall under average risk!). If you want to understand risk assessments a bit better, Dr. Susan Love has a good explanation in her book.
I really think it is important to talk to a genetic counselor. You may indeed be moderate or high risk, and can make some decisions from that point, but this really should be based on their assessment, not your perceived risk. Many research studies have shown women tend to have perceived risks far above actual risk. I am not being critical here, I totally get it. As far as I am concerned the track record in my family for the last three generations has been "100%" but I also know this is not my own real risk. You may very well be moderate to high risk as it sounds like your mother and maternal great-aunts had bc, but genetic counselors are a very important part of the process here in reviewing screening options, risk reduction options, the effectiveness and limitations of any of those options, and making the right referrals for you.
I do not want to come across as being dismissive of your concerns. I know how that feels. Especially when there is fear. I dealt with that for years too. But I do want to stress importance of talking to a genetic counselor. They are incredibly helpful, for more than just testing, and I wish you had been referred to one when you first tested. They may even recommend additional genetic testing for you, depending on what your previous tests tested for, exactly. -
Thanks so much for that, Divecat!
I am considering working with a genetics counsellor outside the UK and wondered if any of the women on the forum can recommend someone? I will look inside the UK, too, but I want someone very, very thorough and knowledgeable and am willing to cast my net pretty far to find them! -
Martha, UT Southwestern did very extensive counseling & testing on me. I was actually checked for CHEK2 and PTEN genes before I was checked for BRCA. I get really bothered by women being BRCA tested without genetic evaluation and an extensive history being done. It really isn't as important that there are just females in your families as the whole picture. Male cancers enter in to the evaluation too. In my case my paternal grandmother & aunt had colon cancer & my dad has had rather aggressive fast-growing polyps. Breast cancer history was just a piece of the puzzle. -
I second that, Melissa. It's a pet peeve of mine as well--it irks me so much. I inherited my BRCA1 mutation from my father, so I had no family history of breast cancer (I've just recently learned that my paternal great-grandmother died of breast cancer, but even if I'd known that, it doesn't really impact my risk assessment), but my father did die of a very swift and aggressive cancer that was either colon or pancreatic and only a genetic counselor was likely to see the risk in that combined with my Triple Negative diagnosis at 34. -
Thanks Lintroller. There are multiple genetic syndromes that elevate your breast cancer risk. BRCA is only a very small piece of what should be a COMPLETE genetic evaluation. Your GP sending a BRCA test does not cut it! -
Join me in as one of those peeved by testing without genetic counselling! Not only for ordering proper tests, but truly being able to interpret those tests. I cringe when I see oncologists and the like ordering tests without genetic counselling. I too was tested for more than BRCA-mutations based on other cancers in my family.
Martha, I am in Canada and originally had genetic counselling through the US-based InformedDNA, who does telephone and web-based counselling, as the wait here to get into a GC was going to be more than a year. I learned about InformedDNA through FORCE (which you might want to check out!). They do use US board-certified GCs and the GC I had has spoke at FORCE events and so on. They get your pedigree and personal history as part of the process. I had a one-hour phone consult after I submitted my history and other information via the web, and they provided me with an actual written summary report after as well.
I then drove to US for testing and more counselling at a cancer clinic before getting into the high risk clinic back here with my results (who confirmed the InformedDNA and other US genetic counselor's risk assessments.) The high risk clinic here than referred me to the proper medical providers. I am glad I did use InformedDNA as it got the ball rolling (finally!) for me. -
Thank you so much for your responses, Ladies. I have found InformedDNA's website.
I have a feeling they will want me to take some blood tests because the narrative on my family is just too incomplete. My father was killed at age 45 so we have no useful information on him or his half brother (the only sibling). His parents died before my parents were married and I don't know of what. On my mother's side the story is easiest put this way: my grandfather's (only) two sisters both had breast cancer and one of his two daughters had breast cancer -- all palpable tumours prior to diagnosis, so they may have been visible by modern day mammography in their late 40's. There were no other children. My sister had a pbmx due to significant precancerous changes in the breast, most worryingly the pleomorphic LCIS, in her late 40's.
I promise to update this once I have heard more news from a genetic counsellor. Thank you all so much. It is a great kindness to respond to my post! -
I just wanted to add for anyone reading this thread that I have found some great resources in the form of podcasts. First, there is a series of about 18 podcasts at present available from a genetics counsellor at Yale Cancer Center. Just do a search on "Cancer Bytes". Second, if you are scientifically-minded you may want to listen to Breast Cancer Update for Surgeons, Bridging the Gap between Research and Patient Care, conducted by Neil Love, MD.
There are a number of other excellent resources as well, but these are my two favourites at the moment. I listen to these while driving back from the school run. I found them incredibly informative, reassuring and very interesting, too!
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