How high is "high risk"?
When I have looked online at the forums here and on other websites, I'm frequently seeing people who mention being high risk because they have a lifetime calculated risk somewhere between 20% and 45%. I'm not seeing anyone mentioning a risk higher than that.
I have a Tyrer-Cuzick model 73.2% calculated lifetime risk. I checked with my breast surgeon's office to see if they think that this model is fairly accurate, since this seemed really high to me. She said that they typical use the Tyrer-Cuzick in their office. She said that this model does tend to overestimate risk (particularly in patients with a family history of breast or ovarian cancer). But she said she doesn't believe my score is terribly far off because I have ADH, LCIS, and because of how young I am (I'm 42 yrs old).
I find that interesting — my score is not skewed due to family history, as I have no known family history of breast cancer. (And my great grandmother had ovarian cancer, but the Tyrer-Cuzick model does not ask about great grandparents). I also have very dense breasts, which I know is a risk factor too. And I have had genetic testing, and I do not have any gene mutations. (I also have a little bit of Ashkenazi Jewish ancestry, but it is only a small percentage of my total ancestry, and I didn't want that to potentially skew my results. So I also ran the calculator and told it that I had no Ashkenazi ancestry, but it only changed my score a little bit: to 70.1%).
Has anyone else had a 50% or higher calculated lifetime risk with the Tyrer-Cuzick model? What was your situation? What did your doctors recommend doing? And what did you end up doing?
Here's my history in a nutshell: I had a lumpectomy in August to remove calcifications with ADH, and that's when they found LCIS too. (Incidentally, when I had a breast MRI they also happened to find that I had a lung tumor — which was very unexpected because I'm healthy and I had 0 symptoms at all. We learned it was a really rare type of lung cancer, I had my upper left lobe of my lung removed last month, fortunately recovered quickly from that surgery, and luckily I don't need to do chemo — just CT scans every few months to monitor it). I am already doing the high risk breast cancer screenings with alternating mammograms & MRIS. My breast surgeon's office suggested Tamoxifen, but I've decided not to take it (I'm not usually one to be overly concerned about medicines and side effects, but I don't have a good feeling about this medication. And my oncologist said she wouldn't necessarily recommend Tamoxifen for preventative use in my case due to the increased risk of cervical cancer). I have been considering a preventative mastectomy (even before calculating my risk), and I've consulted with each of my doctors about that, and am now giving myself plenty of time to consider that option.
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Mine is a bit lower than 50% but I have ADH and am getting a mastectomy. I don't have a mutation that they know of
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hi! I just found your post when googling about my situation, and I joined this website just so I could comment— we are twins! I am in almost exactly the same situation and I haven’t found any other people who are, so I wanted to connect with you.
They were following a small area of microcalcs in my right breast since my first mammogram at age 42. (I’m 45 now). It increased a bit this summer, did a biopsy, diagnosed ADH. My excisional surgery pathology also showed LCIS and ALH, so I have alllll the atypias….I also have dense breasts so my Tyrer-Cuzick score is 68%. I was considering a preventative BMX and even met with a plastic surgeon, but I just don’t know…. It seems extreme to me?
I have also read several articles that the TC scores tend to overestimate risk in women with dense breasts and in women with atypias / LCIS… so I would hate to do something drastic and not even need to. I’m on the high-risk monitoring for now, alternating MRIs and mammo / US every 6 months.Have you come to any decisions or had any new insights about your situation? Would love to connect as we navigate this, sending lots of good wishes your way!
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Welcome to our community, @tenderblossom! We're sorry for the worries that have brought you here, but please know that you're in a great place for support. The following article may help provide some more information when weighing your Tyrer-Cuzick assessment score:
Please let us know if you have any more questions, we are here to help.
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Thank you for the welcome, and for the link! It seems like there are a lot of conflicting articles and studies where it comes to the risk assessment calculators, particularly when it comes to assessing risk for women with atypias / LCIS/ dense breasts — there are some studies showing that the TC score can tend to overestimate in these populations.
Here are a couple of the articles / studies I'm referring to:
https://www.sciencedirect.com/science/article/abs/pii/S1526820921002007
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@tenderblossom you bring up valid points in the conflicting data, we would recommend that you discuss these questions with an oncologist (getting a few second opinions may help with your decision-making). Have you had any genetic testing done? If you're not at increased genetic risk, and don't feel ready to proceed with preventative mastectomy at this time, would you be comfortable in maintaining the high-risk monitoring plan, for however many years your medical team advises? Some high-risk patients have a hard time with scanxiety, and therefore prefer to proceed with the preventative mastectomy.
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Hi @tenderblossom. Yes, it sounds like we have lots in common. When I originally posted about this, I was recovering from surgery to remove a cancer in my lung (that cancer was found last summer during a breast MRI before I had a lumpectomy to remove some calcifications). When they found that I had ADH the breast surgeon's office had recommended that I do Tamoxifin preventatively in the future. But when the cancer in my lung was found, all of my doctors agreed that I should wait until I was recovered from my lung surgery to make any decisions or take any action on the breast findings.
Since then I have recovered well from my lung surgery, and I have taken the time to speak to each of my doctors to get their input about my increased risk of breast cancer. I spoke to my obgyn, to my oncologist, and to my breast surgeon's physician assistant. Upon my oncologist's recommendation, I discussed changing my birth control method with my obgyn. (I had been on a Mirena IUD for 15 years, and my oncologist recommended getting off of that, and not using anything that increased my hormone levels. [And that was before a recent study came out about hormonal IUDs being linked to increased risks of breast cancer]). Anyway, my obgyn agreed that it would be best to stop using the hormonal IUD. I wasn't too sure about which kind of birth control method to use instead, and was thinking I might try a copper IUD, but I didn't know much about them. My obgyn recommended trying different methods, because she said many people have heavier and more painful periods with the copper IUD (and I had told her that I have been considering a preventative mastectomy, and she also said it would be better to avoid a copper IUD which could cause anemia due to heavier periods, and she said that would be better to avoid because she'd want me to be as healthy as possible going into a surgery, if I do choose to do a mastectomy). I told her about my risk factors for breast cancer, and I told her that I'd been seriously considering a mastectomy, and she said she didn't think it was unreasonable to consider that as a possible option. (Oh, and my husband and I ended up deciding on a vasectomy for an alternate birth control method). After confirming that we aren't planning to have any more children (we have 5 kids and our youngest is already half way through high school, so we didn't have any plans for more children at this point), my obgyn cautioned us to take care with birth control between now and once the vasectomy has taken effect, because she pointed out that getting pregnant would increase the hormones in my body by a lot, which would also increase my cancer risks. So I was glad that I spoke with her, because she brought up some good points that I hadn't considered before.
Next I spoke to my oncologist to get her opinions. I wanted to know what she thought about the Tamoxifin, and what her thoughts were about the potential of doing a preventative mastectomy if I were to decide to go that route. I told my oncologist that even though I'm not generally overly concerned about medicines or their side effects, I have not had a good feeling about taking the Tamoxifin since it was first suggested. I personally know people who have taken it in the past and had serious permanent side effects. And I read a scholarly journal that said it increases the risk of other types of cancer, but even so it's benefits outweigh it's risks for people with breast cancer. Except I don't have breast cancer, so increasing my risk for other types of cancer in order to potentially decrease my risk of breast cancer did not make much sense to me. My oncologist said that if I had already had breast cancer she would be making a different recommendation for me, but since I haven't had breast cancer she would not necessarily recommend taking Tamoxifin because of it's increased risk of cervical cancer. She said that if I were already in menopause she might consider another related medicine which does not have the added side effect of increased risk of cervical cancer, but that doesn't apply in my case since I haven't shown any signs of menopause yet. I decided to trust my gut feeling about not taking Tamoxifin, and my oncologist was supportive of my decision. I also talked to her about considering a preventative mastectomy, and that's when I first had any breast cancer risk calculations done. She first ran the Gail model calculator (which technically doesn't apply to my situation, since the first question on the Gail model says not to use this calculator if you have LCIS, among other risk factors), which came back with a risk of 20%, not taking into account the risk from the LCIS. My oncologist was having trouble accessing the Tyrer-Cuzick model calculator while I was at my appointment with her, so we only had the Gail model calculation to go off of at that time. But based off of the calculated high risk of 20% or more, she told me that a high risk screening would be recommended (alternating mammograms and MRIs every 6 months). She did mention that MRIs are better at picking up smaller things and catching breast cancers earlier, but that MRIs also result in false positives because they're more sensitive. I told her that I hadn't made a decision yet, but that I had considered a preventative mastectomy. She told me that while that would be considered a more aggressive approach, that it wouldn't be an unreasonable approach. She told me that she could put in an order for a mastectomy if I decided to go that route. But she also told me that it isn't a decision to rush into, and I've got plenty of time to think about it.
Then I was later able to run the Tyrer-Cuzick model, which calculated my risk at 70%. I spoke to both my oncologist and my breast surgeon's office about the accuracy of these scores, and while my oncologist assumes that the 70% number may be a little high, she does think that it's somewhere over the 20% number from the Gail model. My breast surgeon's office told me that they regularly use the Tyrer-Cuzick model in their office, and that they see it as relatively accurate. They said that this model does tend to overestimate risk (particularly in patients with a family history of breast or ovarian cancer). But she said she doesn't believe my score is terribly far off because of my ADH, LCIS, and my age. (And I did not enter any family history information when I calculated my Tyrer-Cuzick score, so I know that my score was not overestimated due to family history answers).
Anyway, next I met with my breast surgeon's physician's assistant, who is excellent and took the time to answer all of my questions. I told her that I don't feel comfortable about taking the Tamoxifin, and that my oncologist is fine with me not taking it, and she was supportive of my decision. I also asked her lots of questions pertaining to my decision about a mastectomy. I asked about recovery, and she is very confident that I would have a relatively quick and full recovery due to my age and health. I confirmed that I would not only be able to get back to normal activity, but I wanted to make sure that I wouldn't have any future mobility restrictions because I'm passionate about exploring the outdoors, including getting off trail, scrambling, climbing rocks, doing more strenuous hiking and backpacking in remote areas, etc. — and she said that they offer physical therapy, and as long as I make sure to do that I should have full mobility and not have any physical restrictions after I recovery from surgery. We discussed surgical options (the PA had told me that my breast surgeon who did my lumpectomy doesn't generally prefer to do preventative mastectomies on people who do not yet have breast cancer), so I asked her about that. She told me that she would speak to the surgeon and get her opinion about this case now that they know I have LCIS in addition to the ADH. She also mentioned that she also strongly recommends the other breast surgeon who she works with, and that that surgeon has done preventative mastectomies for people who have not had breast cancer, so that would be an option too. But she felt very confident about the abilities of both surgeons to do an excellent job, and that both are very experienced with this surgery, and with doing an aesthetic flat closure (because I'm not interested in reconstruction). I told her that I may opt to work with the second surgeon, if the surgeon who did my lumpectomy has any hesitancy about doing a mastectomy — I'd just rather not work with a surgeon who has any hesitancies about it. And she said that's totally understandable, and she can speak to the surgeon and she'll let me know if she detects any hesitancy at all on the surgeon's part, so I can make that decision. I asked her if she would work with a plastic surgeon or just with one of these two surgeons in her office, and she told me that generally she would recommend that patients work with a plastic surgeon, but that if it were her having this surgery done herself and if she were working with either of these two surgeons she would feel confident in just working with them and not also having a plastic surgeon involved, just because she has worked with so many patients who have had this surgery from these two surgeons before and she is the one who follows up with the patients and sees the results of thier surgeries over time as they recover, so she is very confident in these surgeons' ability with this surgery. So that's nice to hear, since I value her opinion.
Anyway, I took time to speak to each of my doctors and get all my questions answered, I read studies about Tamoxifin, and about the breast cancer risk calculators, and I read many womens' comments here in the forums on breastcancer.org so I could learn from the experiences of other patients in a variety of situations. I've thought a lot about it, and I have decided to do a mastectomy.
I'm 42. So I could be fine for years. But I don't plan to just be around for a few more years. And waiting to see if I get breast cancer in 20 or 30 years, with the risk increasing with each passing year, doesn't sound like how I'd like to live the rest of my life. I know I can't prevent every possible risk. And who knows, there's always a chance I could do a mastectomy and then later get an unrelated cancer somewhere else in my body. But all I can do is make the best decision I can about what I can control. And since I have already had cancer in my lung, I already know exactly how I would feel if I were to get another cancer again. (I've also been watching my mom go through a long tough recovery from appendix cancer and the major surgery that was needed for that, so our family has had our fair share of dealing with cancer this year). So I know that if I got breast cancer — even if regular screenings were to detect it early on, and if it were to be successfully removed — I know 100% that if that were to happen I would still be wishing I had done something to prevent it if that were possible. (Plus, I believe if I were to develop breast cancer, even if it was caught early, that would still change things for me — I believe the recommendations would be much stronger for me to be on Tamoxifin and or Chemotherapy or other long term strong medications if I were to have breast cancer. So, to me, that's another reason to prevent the risk before it may happen as opposed to diligently screening to see if it has already happened yet or not. (Also, I'm not an especially emotional or sentimental person when it comes to these kinds of decisions, which I think is definitely a factor in making this decision a little easier for me).
I read about so many women who had had some or all of my similar risk factors, and SO many of them went through the stress/time/cost of screenings every 6 months, often with frequent biopsies and possibly additional lumpectomies, and sometimes subsequent breast cancer diagnoses — many of these women went through this emotional process for 3 or 4 years, or sometimes for 7 or 8 years, before finally deciding to do a mastectomy and cut their risk of breast cancer down to almost nothing and not have to go through the screenings and procedures anymore. That's a lot of years to spend! We've got a very busy life as the parents of 4 teenagers and 1 in his early 20s who is about to get married. I don't want to spend years going through additional medical procedures while I wait to decide when I'll finally get tired enough of this process to do a preventative mastectomy. I also just overcame cancer in my lung, and while I know that it's not the same kind of surgery, I was able to recover from a serious lung surgery very well. Right now I have my age and my good level of physical activity both going for me, which would be helpful with a quicker recovery from any surgery, and the longer I wait there's always a possibility that I may not be in as good of health at a later time — so to me it makes more sense that if I'm going to choose to do a preventative surgery I'd do it sooner rather than later.
So, that's where I'm at. I've decided to do it. But because of upcoming family wedding celebrations and important family trips and events that have already been planned, I'm not doing it right away. We looked at our calendar, and late next Fall would be the earliest "convenient" time for surgery and recovery. But instead of doing it near the end of a calendar year, we decided to time it so the surgery will be at the beginning of a year. That way when we hit our deductible and out of pocket max, then our insurance plan will cover all our family's remaining medical costs for the whole rest of the year. So I'm tentatively planning to do it a year from January. That also gives me more than enough time to continue considering my decision, and plenty of time to continue educating myself and preparing for surgery. So I think that'll also work out well, since it forces me not to rush into anything.
I know that my decision will not be the same one that many women make, which is totally fine. I think this is a very personal decision, and there is no "right" answer that works for everyone. I just included all these details in case this may be helpful for you and others to consider as you decide what is best for you. But I would recommend writing down a list of all the questions you have, and speaking to several different trusted doctors until all of your questions are answered to your satisfaction. And then allowing yourself time, and not rush into any decisions. Good luck!
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