newly diagnosed with LCIS and puzzled
Comments
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I had breast reduction surgery in January. When I went back to my plastic surgeon for a follow up he talked to me about my pathology report from the tissue that was removed in surgery. The Pathologist found a "microscopc pre-cancer cell" in 1 breast and then tested many different parts of the tissue from both breasts to see if he found anymore. I am thankful that he didn't find anymore - and he said he looked very hard. Anway my Dr said that I had LCIS and that I should go see an Oncologist to see what to do from here as there were a few different options. I did go see him and then a few more that were highly referred to me. They basically said I could do 1 or even all 3 options. One I can come in more often for physical exams and mammo's, MRI's, I could also take the Tomoxifican or if I really wanted I can eventually have a bilateral mastectomy. ( he doesn't feel that i need to do this, however he said several do as they don't want to live with the anxiety.) This whole LCIS has scared me silly!!!! I am a nervous nelly!!! I don't do well with the unknown, I keep my anxiety in check but I am sorry but the wonder if not knowing if I am going to develop bc at anytime could drive me crazy!!! I realize that you could worry about this with any cancer. I am still very undecided on what I am going to do. Yesterday I was thinking that at the moment i am going to just go in every 3 months for check up and then MAYBE MAYBE take tomox. I do not do well on drugs - i have a very sensitive stomach, have back problems (heard that people on this drug get joint pain) so on. Part of me says the heck with it just do the bilateral mas/reconstruction. Or then my mind gets rollin and i think well I could have another breast reduction to take even more tissue out to lessen the bc risk even more. I do not have BC in my family. My great great great Aunt had BC but Dr said that really is too far back.
I am so new to all this so I am thinking all sorts of things and would love any input anyone has. I have been told by many professionals and friends that i need to be glad that i had the surgery as they may have never found it. Believe me I am thankful!!!! I am sooo happy with my b. reduction in soooo many ways. I went from a DD to a full C and am thrilled with my new boobies, it is just that i now have to think about this. I have had comfort in knowing that i have all of you who have had or have this. I am glad that i found this website. has. -
Hi there 62192. Welcome to our forum! I am sorry you had to join us, but you found a good source of support.
It sounds like you had an excision of the area, right? I think that's one thing that most people agree should happen once a biopsy reads LCIS and nothing worse.
It is a very confusing diagnosis. There is controversy in almost every aspect of LCIS, from what it should be named, how frequent it occurs in the general population, what risk of breast cancer it imposes, and what treatment (if any) is appropriate.
In my case, I went in for exams every 3 months for a year or so, then it dropped to clinical breast exams every 6 months plus yearly mammogram. (I've been on tamoxifen since 7-06.) According to ACS, it is controversial whether LCIS with nothing else should be followed with MRI for screening. A consult I had with a major institution said I had too much scar tissue. I have a lot of problems with this ACS paper with regard to LCIS (see my other posts on other threads) but here's the link to the paper. http://caonline.amcancersoc.org/cgi/content/full/57/2/75
There is NO RUSH to decide which option is right for you, unlike our bc sisters who have DCIS or invasive.
Even if you decide on prophylactic bilateral mastectomies (PBMs) (my breast surgeon is against this for me), most reputable breast surgeons will make you wait several/many months to make sure emotionally that this is what you really want. The NCI website states that most breast surgeons do not encourage PBMs for LCIS alone. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6 The situation would probably be different if you were BRCA positive. (It sounds like you have a low risk for BRCA. If you have few women in your family tree (i.e. for example you have no sisters and your mother and father had no sisters), then you might want your family evaluated more closely.) Remember, only about 10-15% of breast cancer is thought to be caused by genetic mutations of a single gene (most commonly BRCA.) Most bc is sporatic.
One physician opined that a reanalysis of a paper indicated that a bad family history (first degree relative with bc) only puts you at higher risk for bc (beyond the risk you already have for LCIS) if you were diagnosed with LCIS before the age of 40. If you look at the Port paper, about 80% or more of the women with LCIS who were diagnosed with bc had a first degree relative with bc. These numbers in the Port study are too small to make any meaningful statistical value, but they are consistent with the idea that family history may NOT put you at higher risk (beyond that of LCIS) if you were diagnosed with LCIS after the age of 40. I'm sure this, as with all in LCIS, is controversial.
For tamoxifen or raloxifene, you can try them out if you want, and if they aren't for you then you can stop.
We have had women with LCIS only who have posted here who have been recommended everything from screening only with annual mammos and biyearly exams with or without MRIs, tamoxifen or raloxifene only with the screening previously mentioned , or prophylactic bilateral mastectomies.
I have been told by different health professionals that my LIFETIME risk of breast cancer is anywhere between 10% and 60%, but one breast cancer risk calculator, which has NOT been peer reviewed or compared to populations, gave my risk as >85%. But I think the most reasonable guess is that the risk is somewhere around 0.5 or 1% per year. So this means if you were diagnosed with LCIS at age 45, and expect to live until the age of 80, that your risk might be about 80-45=35%, then subtract those women who die from something else before they reach 80, and the risk of getting breast cancer in the PAST, so it might really be something like 20 or 30% (just guessing). If you opt for tamoxifen or raloxifene, this risk might be cut in half, and it would be quite low indeed if you have PBMs.
You may want to read the 'moving too slowly' thread and the 'what would you do' (for more on statistics and the failings of breast cancer models) threads in this forum for more reactions and experiences of different LCIS women.
Feel free to ask any questions you might have.
There's no consensus about this. There is no right or wrong decision, there is only the decision that you make that is best for YOU. -
It also depends on the characteristics of the LCIS. I discovered I had LCIS when I had a lumpectomy for actual breast cancer. In my case, the LCIS were extremely high grade, which is what decided me to have a bilateral mastectomy. Mine were acting more like actual baby cancers rather than like risk indicators. I think the anxiety factor was what motivated me to take drastic action. I'm prone to insomnia, obsessive thoughts, jitters in the best of circumstances. I knew I couldn't take the additional stress. But even in my case, where I had had actual breast cancer and high-grade LCIS, I waited a year to have the mastectomy. So take your time and see how it feels to have this in your life. If it doesn't feel good, you have options.
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62192,
Take your time with your decisions. Get informed. As soon as I was diagnosed I was talking mastectomies. Too soon. My family was horrified at how matter of fact I was about "lopping off the girls". When I was done with the lumpectomy I was so happy I still have my breasts and there is a medicine I can take in the meantime and closely monitor. I would NOT say that a month or so ago. I was totally against monitoring and tamoxifen. Now I have been on it for almost a month and I will have alternating mammograms and MRIs. So please take your time to settle in with your diagnosis, and ENJOY your new smaller (and I am assuming more comfortable) girls!
Kimber -
Hiya 62192! You have found the right group! I too was just diagnosed with LCIS in Feb. and understand all you are going through! I saw the oncologist the first time on Monday (it was a difficult thing for me- as soon as I walked in I told my hubby I wanted to just go home and maybe everything would just go away!) and was prepared with a list of ?s that the ladies on this forum helped with. For now I have decided to start Tamoxifen (day 3 today), and it was a tough decision, cuz like you I am very sensitive to drugs (even tylenol makes me sleepy!). Everyone tells me it takes awhile for side effects to appear, so I decided to make a journal of everything I notice each day. So far, an hour after taking it yesterday I felt "fuzzy headed", kinda like you do right before a really bad period (like hormones are all out of wack). So, we'll see!
Like you, I started a post and came up with all kinds of good info and support from everyone here- like leaf said, you can find a lot of answers at "moving too quickly".
Know you are family here, and everyone is great. hugs- Denise
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I can't really add much to what has been said. LCIS, being found incidentally in your case, is a wake up call, but does not necessarily mean an emergency. Read and think, but don't panic. You will eventually come to a decision about what is going to work for you. Just don't ignore it. At the very least, get regular exams and take care of yourself.
Anne
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Hi Everyone
Thank you for all the letters of support. It is so nice to hear from other people that have or are experiencing this. I think I am really going to like this forum.
My family too went nuts when I mentioned anything having to do with a mastectomy. My husband was fine it was more my folks. I am definately not just thinking of that route - I am looking at all the possibilities.
I did not have an excision per se. After they found this pre-cancer thing they checked all around the area in all different parts of the tissue. So I guess maybe that is an excision, is it?? The only reason i found out about this is that I had this b.reduction and they test the tissue. Until my PS showed me my Pathology report I forgot that they test all tissue that is removed for whatever reason.
I have an appt with my Oncologist on Monday to talk more about this Tomoxifican. He knows it makes me very anxious but i wanted to get some more input. I mean how do people know how long this drug works. Does it still work after the 5 years. The first Oncologist that i saw said something about taking tomoxifican until i go through menopause and then possibly switching to some other drug ( can't remember the name, only can be used AFTER menopause) Can you guys tell me about that drug? I am 47 years old - have been having some hot flashes for the last year but still get regular periods. I am thinking I won't be done with menopause for quite a while. The Oncologist that i see is very BIG on eating 4-5 serving a day of veggies/fruits and exercising 30 min to 1 hr a day/every day of week. He said their is proof that people chances of getting b. cancer is reduced just by this alone. I am a relativly healthy eater anyway and exercise aobut 4 days a week but not sure if i can do 7.
Hope to hear from more about all this.
Allison -
Hello 62192. I was diagnosed with LCIS in December 07 after having a biopsy to determine what was showing up on the mammo. The suspicious area was nothing, but then this LCIS was found. Like you, I was all for mastectomy because I didn't understand what LCIS really meant. I knew it was a precancerous situation, but thought that the LCIS actually turned into cancer. Now that I know it increases my risk for any type of breast cancer I am rethinking my original decision and have decided to forego the surgery. I have also decided against the drugs (tamox or evista) because the possible benefits for me do not outweigh the negatives. Like Leaf said, the increased risk is there, but even after 5 years of not doing any drugs, my risk will stand at 20% (12% is the risk for general pop + 3% increased absolute risk with LCIS + 1% increase per year). On a drug the risk is only reduced by 2.5 percent over a 5 year period. So even without taking a drug, after 5 years you still have an 80% chance of NOT getting breast cancer. Pretty good odds I think. I've never had to take any medication and I am reluctant to begin now. I'm a healthy 57 year old who exercises, am at a healthy weight, am eating better foods, drinking less wine, take vitamins and calcium and use 1 tsp of home-ground flaxseed daily in my cereal at the suggestion of my cancer center's nutritionist. I may still get cancer, but I refuse to be controlled by my condition. This board is a great place to gather lots of information. So keep reading everything you can about LCIS and once you get your brain around the situation, I think you will be able to make wise decisions and gain control of your life. Good luck! Pat
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Allison- from what my onc said, I will be on Tamoxifen for 5 years, and after that we are not sure. I too am 47, and have not started menopause, so the other drugs like raloxifene aren't an option yet. From what I understand, and others like leaf are much more knowledgable than I am yet (I'm trying, but I'm a newbie too), but once you're off the risk goes up again. I am trying the Tamox because I am considered a very high risk. As my onc said, hopefully in 5 yrs they'll have more studies and info on LCIS.
Like rosedew said, you have time. Search the posts here and go to your onc loaded with ?s, and you'll ultimately make the decision that's right for you. And like I always told my kids, no decision is permanent-you can always change it down the road!
Hugs and good luck to you- Denise
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About tamoxifen: as far as I know there are NO studies that I know of that have looked at tamoxifen IN LCIS women beyond 5 years. So in that sense we don't know. I don't know of any studies of tamoxifen in women who are high risk but have never had bc beyond 5 years.
We DO know that tamoxifen does decrease the incidence of breast cancer beyond 5 years in women who have had estrogen/I think progesterone positive invasive breast cancer when they stop tamoxifen at year 5. I've seen studies that says you still get some effect from the tamoxifen under these circumstances even after like 10 or 15 years, when tamoxifen was stopped 5 or 10 years previously. There was one study (if I remember right, and I may not be remembering right) that after 10 years of continuous tamoxifen there was an increase in endometrial cancers or something.
The STAR trial (of postmenopausal women) compared tamoxifen with raloxifene in high risk women who had not yet had breast cancer for the first time. I don't think it lasted more than 5 years, but I also don't know if they are continuing to follow these women.
62192: You very well may be in a special category with breast reduction. The reason they do excisions after LCIS is found on biopsy is to ensure that you don't have something worse going on. Since they removed parts of your breast in breast reduction, they undoubtedly looked at the pathology of those removed parts - otherwise they wouldn't have found your LCIS. When my surgeon did my excision, she looked for any pulling, which I'm sure your surgeon would have been looking for too.
Its wonderful that we all can come to the right decision for each of us in our own way. There is no one right way, only the best way for each of us. -
Alison,
I'm sorry you are here with LCIS worries, but this is a great place to get support and questions answered by knowledgeable ladies who have been / are in the same position!! I'm one of the LCIS ladies who opted for bilateral mastectomies. In my case, it was found first on suspicious mammo (calcifications), stereotactic biopsy, excisional biopsy and core biopsies (4) only in the right breast. The left side had some suspicious stuff, but benign. After talking with 5 different surgeons & oncologist, my decision was to go for mastectomy to be sure. They all agreed mostly because in my case the right breast was full of it....every quadrant and biopsy was LCIS. I think because of that, I feared that maybe there was invasive portion that they just didn't catch. I'm not trying to scare you, but this was just my feeling. It turned out that there was a microinvasion and I felt relieved that they got all of that tissue out of me. The important thing is that now that you are aware of the LCIS, you can do the monitoring and Tamoxifen and will be able to catch anything very early (if there is anything to catch!) Each case and situation is different and I'm sure that you will hear different opinions on what is best. You will know what is most comfortable to live with and what your doctors suggest, but it does take a while to get to that place of knowing what you want to do about it. At least know that you have some time to make these decisions and that you can ask any question here after you've talked with your doctors. Sometimes hearing from other women in the same situation makes you feel better (especially if most of your doctors are men!). Feel free to ask anything and I'm sure there is someone here who will be able to answer. Take care and know that we're all behind you!
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Yes that is what I am going to do, enjoy my new girls and keep trekking a long. I am going to ask questions, find out as much as i can and in the meantime keep checking in with the Dr. So far I wouldn't really say that I lose sleep but I do wake up in the night thinking about it sometimes. I am trying to keep a positive attitude about it - that goes a long, long way!!!! Today I was watching my 7 year old's softball game and just feeling how lucky I really am to have 3 great kids and a family that i love and they love me!!!
HOWEVER that worry will still hang on. To me the thought of having to take a drug that might have yucky have side effects and not know what will happen after 5 years just does not appeal to me. BUT it still doesn't mean i won't do that. I just don't want to worry about this consuming my life and worrying myself sick about it. As I said I really tend to get anxious about health matters such as this.
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