Unilateral Mx for pure DCIS - Tamoxifen?
After a lumpectomy and re-excision failed to get good margins, I had a RMX on June 2 for a large area of DCIS. The closest margin on my final pathology report is 7mm on the inferior margin of the resection. My oncologist is recommending 5 years of Tamoxifen, mainly as a preventative measure for the remaining breast. She places my lifetime risk of developing BC in that breast at 20% without Tamoxifen, 10% with. I'm 47 years old and pre-menopausal (possibly peri-menopausal). I'm concerned about all the side effects associated with Tamoxifen, like the escalated risks for uterine cancer and blood clots.
The OC will also be monitoring me every six months with clinical exams and alternating mammograms and MRI's. Wouldn't that be enough to immediately spot a problem? At the first sign of trouble, I will opt for a LMX.
I'm interested to know how many of you who have had unilateral MX have also taken tamoxifen. What are your thoughts? What do your oncologists recommend? I've decided this morning to seek second opinions on this matter, so if you can think of any questions to ask ...
Thanks.
Getty.
Comments
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Hi Getty, I am wierdly in exactly your situation. I am 47, had rmx in May. I have not yet met with the oncologist. My BS said that with a mx the risk-benefit ratio for tamoxofen becomes equal. I, too, am concerned with the remaining breast. I had the idea that when I have a left breast reduction as part of the recon. process I am going through I would ask for path to take a look and see if there are atypical cells and then decide...maybe I am just putting things off. I will be curious what others think and what advice I get next week.
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Getty & Lollyo --
I am 44 and had a LMX in December with immediate DIEP reconstruction. Stage 2 was in April and I am anxiously awaiting my nipple reconstruction soon. My situation is similar to both of yours, although since I had a hysterectomy in January 2009, the risks of uterine cancer doesn't apply to me. The side effects for me are, what I call, "nuisance side effects". My oncologist surgeon and medical oncologist both recommended 5 years on tamoxifen and I started it on June 1. I must say, so far, so good. The only thing I have noticed is some constipation (nothing a little colace can't assist with - hee hee) so I am remaining optimistic. It is definitely a personal choice. Sometimes the statistical chance of a reoccurance of breast cancer is so low that for some women it doesn't make it worth the risk of the side effects the treatment can bring. For me, I am willing to try so I can say I've done everything I can do to keep this nasty business from returning in my healthy breast. Good luck to you both!
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Lollyo: Please let me know what your oncologist says. I also had the thought about having a pathologist look at tissue from my left breast during the reconstruction process, but my PS is hopeful that I won't need a lift, so that may not be an option that is available for me.
I've looked at some of Beesie's posts on here. She really is a wealth of information. I don't think she has posted recently, but I'm hoping some of the other very knowledgeable women here stop by this thread and give us their thoughts.
Beaglesmom: The one reason I keep coming back to the Tamoxifen is that, like you, I want to be able to say that I did absolutely everything to reduce my chances of having to tangle with this beast again. That being said, I don't want to somehow cause another problem like uterine cancer or thrombosis because I'm trying to prevent something that won't happen anyway. This is so darned difficult! And it never seems to be over.
I hope your recoveries are going well!
Getty
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My 2 cents:
I've been told that in NY, and perhaps in most states, it's required that any tissue removed from the "healthy" breast be sent to pathology.
I had multicentric DCIS and was able to avoid a mastectomy because a) I had large breasts and b) the two areas happened to be located in exactly the places they'd have to remove tissue anyway if they were doing a breast reduction surgery. So I had a very unwanted bilateral breast reduction.
I consulted with a medical oncologist both before surgery (when I was still in the surgical decision making process) and after. I should also note that on biopsy, LCIS was found in addition to the DCIS (same breast). At that point, the onc said he'd recommend Tamoxifen but he wouldn't really push the issue.
I understood that to keep my breasts, I was also accepting a higher than average recurrence risk.
After the "real" surgery, turns out I had ALH in the "healthy" breast. And the med onc felt more strongly about the Tamoxifen.
I started Tamox June 1, and don't really notice many SEs.
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Hi. I had 3 lumpectomies for DCIS, stage0 before I decided on bilateral mastectomies, (one was skin/nipple sparring & other just skin sparring, with reconstruction). I was told by the oncologist that I would NOT have to have Tamoxifen if MX and no radiation. Recommendation for me was if I had a unilateral MX, I would not need anymore treatments and that the risk to the other side was very low.
I choose to have a bilateral because I didn't want to worry about it coming on the other side in the future. DCIS is still in its microscopic, contained stage and does not always present with calcifications that show on mammos. The pathology on the cancerous breast showed it actually was all over, under the nipple and within time would have turned invasive. All the mammos & MRIs couldn't detect that, only when tissue was taken & tested. That made me wonder about the other side.
Taking Tamoxifen for 5 years is a decision I wouldn't make lightly. Tamoxifen blocks estrogen and since you are pre-menopausal, it will put you into menopause & from what I've learned is not always an easy journey. I'm happy to hear it has been o.k. for the other ladies. It is wise that you are considering the risks of other cancers and seeking a second opinion. I'm sure you will monitor the other side carefully.
For me, I really had to decide whether I wanted all the worry and hassle in the future, monitoring it or even having to deal with it if it came back. I am very happy that I prophylactically did the other side. The nipple sparring MX came out beautifully, and will probably look even better than it was before when I'm done with reconstruction. When the oncologist said if I chose the MX, I wouldn't have to take the Tamoxifen, that sealed the deal for me. I have other health issues & adding 5 years of hormonal change & other cancer risks would have seriously changed my quality of life.
Did you have reconstruction done after your MX and how was the process for you? If so, do you like the results? If you did the other side too, how would you feel?
The pathology on the non-cancerous side did show some cell/tissue and fibrocystic changes and although it wasn't cancerous yet, it would have caused many years of worry for me. I'm so glad I don't have to even consider it.
I would definitely get another opinion on the reoccurrence rate for the other side, and the statistics for the other types of cancer. It is a big decision whatever you decide to do and I wish you the best. Maybe some of the other ladies who have finished the 5 years on Tamoxifen can tell you about their journeys and what it was like for them. There really is no right decision, only what will be best for you.
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almagetty-----I am high risk due to LCIS and family history of ILC, so taking tamoxifen was pretty much a given for me. Fortunately, I tolerated it well overall ( took it for 5 years) and now I take evista, which I also tolerate well. (I do have SEs of hot flashes and some achiness/stiffness, but that may be more atributable to my surgical menopause, or the combination of that with the meds, not just the meds themselves. Tamox does have the risk of blood clots and endometrial cancer, but the risk is very low, less than 1%, but I would recommend a yearly transvaginal US to monitor the uterine lining and the ovaries.
Anne
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Thank you all for chiming in. I will definitely be calling my BS tomorrow to get a referral to 2 more oncologists so that I can get second opinions.
Anne: It's good to hear from someone who has finished her 5 years of tamoxifen and tolerated it well. I will be seeing my GYN in 3 weeks and will insist on the TVUS yearly to monitor for anything that may go on down there.
Hummingbird: I did have reconstruction with my MX. I presently have a TE in, which is filled to 375cc out of 500cc, so I don't know how I'm going to look after exchange. The whole reconstruction process has been way easier for me than I ever thought it would be. I've had very little discomfort with the TE and the one fill that I had so far was completely painless. I will be asking my PS about when and how a prophylactic MX would happen. He had previously mentioned that if I chose to have a bilateral, the healthy side would be skin sparing/nipple sparing with a direct to implant surgery.
Sweatyspice: Thanks for your advice. If I end up going the tamoxifen route, I hope that I'm as lucky as you with the side effects.
Getty.
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almagetty- we are in similar places...just had my first fill & going for second. What size do you intend to get to? I feel so big already & only 200cc so far. I fit into a C cup & am surprised how much the sizing varies per person. What an awesome choice to have NSM DIRECT to implant. WOW! I had one side NSM & other SPM. Did you have stretch marks with your MX w/ TE?
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I've had a bilateral mx, so this might be totally different, but I started on Evista, and have had no problems with it--it was sort of my way of trying to do everything without going overboard, which is what my onc thought tamoxifen would be. But that's with a bi-lateral. I'm 48. The thing with tamoxifen is that if you had bad se's, you could quit; also, my understanding is that if you have been on birth control w/o problems before, don't smoke, and aren't overweight, the chances of any major problems are extremely small. Isn't the uterine cancer something like 1 in a thousand? To me, that and the fact you could just quit if it bothered you would make me want to do it. But,as I said, I didn't have to decide, because my onc wouldn't prescribe it, and the Evista's actually been great--no problems, and lighter periods, and they say it reduces risk of bc by 50%
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Hi Getty & all,
I was originally dx'ed as DCIS grade 3 and coming out of MX they found a very small (7 mm) invasive area so I ended up stage 1 (grade 1). I was recommended and opted for taking tamoxifen. Your question of, "wouldn't they find it quickly" with all the mammos and MRIs has the answer of "maybe". The problem is that hte aggressive ones aren't found quickly enough. I know several women who'd had their mammos and breast exams religiously and then several months later found a lump that was significant size & aggressive. But, on the other hand lots are indeed found on mammos & MRIs just fine and would be caught early. Hence, "maybe." The question is what is your risk tolerance?
I would note a couple things about tamoxifen, based on a lot of research I've done and having taken it now for 7 months. First, be aware that the major dangerous side effects of blood clots and uterine cancer are quite rare. They happened in something like 1 in 1000 women w/o tamoxifen, and 2-3 in 1000 with tamoxifen. I'm unsure of the exact time frames but the studies have women taking tamox for at least 5 yrs, so its at least that long. In comparison, your lifetime risk of BC your onc estimated is about 20%, or, say, 1% a year if you had 20 years of natural life left. Let's hope you have more, I'm just throwing out round #s for comparison to the #s for the dangerous SEs. In other words, your risk of BC/yr is higher than your getting a blood clot or uterine cancer/yr on tamox. In addition, the risk of uterine cancer is even lower in premenopausal women, at least as long as they keep menstruating while on tamox (about 75-80% do keep periods). This is becuase as long as you keep shedding the uterine lining with periods, then it doesn't stick around long enough to turn into cancer.
One correction to someone above - tamoxifen does not cause menopause. Some women's periods stop, or get lighter, or get further in between, but none of that is true menopause. In fact, tamoxifen is a stimulus on the uterus and ovaries, even while it is an estrogen blocker in breast tissue. True menopause is the stopping of your ovaries making estrogen, with the consequent stoppage of ovulation, your periods, and other "side effects" that go along with ~75% decrease in estrogen in the body (the other ~25% of est is made by your adrenal glands mainly and that continues to be made post-menop). So the good thing is that because tamox can act like estrogen in a lot of the body, it actually stimulates building of bone, for instance. A good side effect, for a change! On the other hand, the change in balance of hormonal levels (with tamox acting like estrogen in various places other than the breast) can lead to some of the other SEs like hot flashes, joint pain, vaginal discharge, changes in menstruation (including stoppage as long as you're on tamox) etc.
To get more personal, my own experience with tamox has been mostly fine, and 7 months in its essentially a nonevent on a day-to-day basis. I take it with my vitamins and it could just as well be one of them. In the first 3 months I had two times where I felt really icky for 3-5 days (nausea, really tired, headache) but then that stopped. That was as bad as it got for me. No new hot flashes, no joint pain. My periods are getting lighter (no problem!). I had a few days of spotting last month but then got my period normally this month and no spotting, so my gyn has said I'm fine. (Spotting when no periods should be looked into). I know a number of other women who also are just fine on it. Finally, I will mention that I saw 2 oncs and both wanted me to take it. The second said something like "let's give it a try and if it's really crappy for you we'll reconsider". In other words, I could quit. Once I realized that it made sense for me to try it, since I really really don't want to go through another MX and recon if I were to get bC in my other breast. But that's just me. Oh, fyi, I'm also 47, probably perimenopausal (a few warm waves come my way sporadically, and did before tamox), uni-MX.
Good luck on your decision!
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cs7777: Thank you for taking the time to write. Your post has truly helped me to organize my thoughts and my worries about Tamoxifen. You gave me a lot of really excellent information. Plus, it is really good to hear firsthand from someone who is presently taking the medication who is in practically the same situation as I am. How soon after surgery did you start the Tamoxifen?
laurakay: What you and CS7777 said about being able to stop the Tamoxifen if I'm just too miserable on it makes a lot of sense. I asked my onc what would happen if after six months to a year I was having a bad time with it and she said we would discuss it then. She said quality of life was something she would strongly consider in her recommendations.
hummingbird: I'm going for symmetry with my remaining breast. My healthy breast is somewhere between a B cup and a C cup. I would say that at 375cc, my reconstructed breast is presently a bit less than a B. I am able to wear a padded VS bra that I have (no underwire) and it makes me look practically even with clothes on. My PS was able to fill to 300cc in surgery. He used Alloderm to create a sling for the bottom part of the TE because he said my pectoral muscle cuts across my chest pretty high. He was therefore able to fill way more than he normally does. The great news with that is that my fill process will be pretty short. I should be able to have my exchange in late August or early September.
Thank you again, ladies!
Getty
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Hummingbird: I just remembered that you asked about stretch marks. Besides the one that I had before surgery (which is, unfortunately, still there) I don't have any stretch marks.
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Getty, I was 49 when diagnosed. I too had a single mastectomy. I was told that my risk to get BC again, in my remaining breast, was about 22%. I was offered Tamoxifen as a preventative treatment but my oncologist actually recommended against it. That surprised me, so I did a lot of research on it, and in the end, I agreed.
The main point for me was that my benefit from Tamoxifen would have been a lot less than I expected. We've all heard or read that studies show that Tamoxifen reduces the risk of a new BC by about 50%, and many doctors quote the "50% reduction in risk" number. But those results are on the high end of the scale - other studies show a lower benefit (35% or 40% BC reduction). So assuming a full 50% reduction in risk is optimistic. Still, a 35% reduction in BC risk wouldn't be bad either, but here again it's not that simple. Tamoxifen is taken for 5 years however studies have shown that the full risk reduction benefit from Tamoxifen extends at least 10 years, and possibly beyond that. The benefit does not last forever, however. That was my oncologist's main point to me. While I had a 22% risk, this risk extended until I was 90, over 40 years. My risk over the first 15 years (probably the maximum amount of time that Tamoxifen would remain fully effective) was only around 7% - 8%. A 50% reduction in my risk would at most reduce my risk by 4%. At 35% reduction would provide less than a 3 percentage point benefit. So taking Tamoxifen for the 5 years after my diagnosis in fact would only have cut my lifetime risk from 22% to 18% (in the best case scenerio).
A 4 percentage point reduction in risk is meaningful, and for a lot of women, would be incentive to take Tamoxifen. For me, it was not. Two people close to me died very suddenly of blood clots so I have a somewhat irrational fear of clots, deep vein thrombosis and other related conditions. Although the risk of these conditions from Tamoxifen is low, any increase in this risk is too much for me. That, combined with my surprising low benefit from Tamoxifen, is what drove my decision.
I'm not writing this to suggest that you, or anyone, not try Tamoxifen. The point is to do your homework, understand the benefit that you will get in terms of risk reduction, understand the risks, and decide if it's worth it to you. And if you are unsure, then as others have said, there is no harm in starting on Tamoxifen to see how you tolerate it.
I hope that makes sense and helps (a bit, anyway!).
FYI, here are a couple of articles that talk about the long-term benefit of Tamoxifen:
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Thank you, Beesie. That actually makes a lot of sense. Thank you for breaking down the percentages like you did. I'm a really numbers oriented person and it helps me tremendously to see things laid out in this manner. There is so much to think about!
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Hi - I am 51. My microcalcifications were found on a routine mammogram. DCIS was diagnosed after a stereo biopsy. I had a lumpectomy followed by mammosite HDR. I finished my treatment on 6/11/2010. Going for a consultation with the oncologist today to talk about Tamoxifen. The whole idea of taking a drug with many potential SEs for 5 years is hard for me. I haven't had any medical issues (before this surprise DCIS) and have not had to take any prescription drugs. I am feeling well and back to all my regular activities. I am not considered to be in menopause, but have not had a period since March/2010 and before then only every 3 or 6 months. I have been reading many posts (thank you all for the info) and it really helps to hear other opinions and situations.
I hope I come home with more answers today. I will share any good info!!
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