LCIS blog- preventative bi-lateral mastectomy
Comments
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Hey, it's not a silly question, SallyO. . . learning about LCIS is an evolution, and I'm still not sure I've got it down. . .
I'm pretty sure with the vigilant monitoring, they are looking for a) signs of new microcalcification clusters that might signify some new LCIS or an invasive C lurking. b) actual shadows that indicate a lump may have formed. That's why they do both mammo and mri (and maybe ultrasound), as microcalcs aren't necessarily visible on MRI, and MRIs are better at finding a mass. They're big on comparing the two AND especially comparing the old films with your new ones to look for any changes at all.
Don't know if that helps at all, but I've just had my 1st 6-mth followup round, and judging from what the radiologist and BS told me, these are the things they were looking for -
Best of luck to you!
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Agreed - no silly questions.
However, I don't know if they really care if there are NEW (i.e. previously undetected) spots of LCIS (AFTER they have found some LCIS in another spot). Why? Because a) When they did prophylactic bilateral mastectomies on LCIS patients (which was routine before the 1990s or so), they normally find multiple spots of LCIS. LCIS spots are usually multifocal (meaning there are multiple spots of LCIS in a breast), and is often, but not always, bilateral (i.e. in both breasts.) However, after you have had an excision to remove the area around LCIS, they don't reliably know where other spots of LCIS might be. I think there is at least controversy or uncertainty whether or not multiple spots or extensive spots of LCIS convey a higher future risk of breast cancer than LCIS.
In those LCIS patients who do go on to get DCIS, IDC, ILC or some other breast cancer worse than LCIS in the future, the 'worse breast cancer' (i.e. DCIS, IDC, ILC, etc.) often appears in a place that formerly looked normal on imaging. They can't go back in time and test if this area contained LCIS in the past, because if they removed that area by biopsy or excision, then it can't very well grow in the breast to become DCIS, IDC, ILC, etc. When they do clonal studies, they find that SOME invasive breast cancers have a lot in common genetically with their LCIS, and other invasive breast cancers do NOT have a lot in common with their LCIS.
The purpose of monitoring is to try to catch the worse (i.e. DCIS, IDC, ILC, etc) breast cancer as early as they can.
BTW, the NCCN recommends yearly mammograms with twice a year clinical exam, with or without antihormonals (i.e. no MRI) for LCIS patients ; or prophylactic mastectomies as indicated. http://www.nccn.com/files/cancer-guidelines/breast/index.html#/60/ I (with classic LCIS) have not been offered MRIs. I'm not saying I'm comfortable with this, but probably the majority of women (at least those that don't have a significant family history) with classic LCIS *never* go on to get DCIS, IDC, ILC, etc. in their lifetime. (PLCIS may be a very different story, but we don't know anywhere near as much on PLCIS as we do on classic LCIS.)
Mammograms are better at finding microcalcifications (which is how DCIS or early breast cancer usually or often presents).
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Annievan and Leaf: Thanks so much for your time and replies. I have learned a great deal from you ladies. The diagnosis of Breast Ca has come such a long way. In 1994 I was diagnosed after a routine mamo that showed a new scatter of micro cal.
Went for a sterotactoc biopsy which showed DCIS with intermediate nuclear grade and no definitive evidence of infiltration seen in 2 out of six fragments,
Then went for an open biopsy to remove all calcafications.. and the result was "In situ mammary carcinoma primarily lobular type with focal involvement of terminal ducts, Fibrocystic duct with atypical ductal hyperplasia. Maybe that's why I had the calcifications??
Sooo at that time, to me it was like they could not make up their mind. This also went to a tumor board etc. At that time there wasn't as much information as there is now. All I knew is that it put me in a higher risk category. Mother died early age and don't know history of family because they were from Europe and you died whe "your heart stopped", did not like to talk of illness.
To make a long story short, I Had a BLX w/ immediate reconstruction (tram) new at the time. I did not have to have any nodes taken, which was good. I have not looked back but a good friend was just diagnosed with IDC grade 3 Triple neg and thus my intrest resurfaced and found this board. I did not want to go with observation every 6 months and still don't think I would want to . I was fortunate to have good BS and PS. So that's my story tks again!! PS they found LCIS in other breast after surgery
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This study (link below) has been used here to "prove" that you can have ILC without it being noninvasive first by suggesting some LCIS is not genetically related to THEIR ILC.
http://www.ncbi.nlm.nih.gov/pubmed/17380381
I've removed the methods used and some of the 50 cent words describing how the author conducted the study. I emphasize the stated aim of the study and the summary of findings.
Two cases of ILC and all 4 cases of IDC were clonally unrelated TO A PREVIOUSLY diagnosed specimen of LCIS. They looked for IDC and ILC found LATER ANYWHERE ELSE in the same breast. The study states their aim is to examine a precursor role for LCIS and IBC in the SAME BREAST at a LATER TIME.
We aimed to examine a possible precursor role for LCIS and IBC occurring in the same breast at a later time. ...Two cases of LCIS and ILC showed a clonal relationship. The remaining two cases of ILC and all 4 IDC were clonally unrelated to the previously diagnosed LCIS. ...our data clearly show that some LCIS eventually do progress to ILC. Thus, LCIS represents both an indicator lesion for an increased risk of subsequent invasive breast cancer and in some cases a precursor of ILC.
They attempted to genetically link a PREVIOUS LCIS specimen to LATER occurrences of IDC and ILC that presented later ANYWHERE in the same breast. Their purpose and intent did not in any way attempt to "prove" that ILC can appear without a precursor of LCIS. This is not even remotely suggested.
<br /It is totally fascinating that an LCIS can signal that ANOTHER LCIS present or to come may become invasive, in either breast. That an LCIS can signal a chance of DCIS/IDC is mind blowing. One day, I'll look into this a little more. This study has piqued my interested.0 -
You may be aware SallyO, that it can be hard sometimes to diffierentate between LCIS and DCIS.
Your BMX was occurred prior to invasive disease, if I read it correctly. While the diagnosis of breast cancer has come a long way since 1994, I can just imagine that specific indicators of which LCIS and DCIS may or may not invade are closer than ever!
Other breast issues, such as density may be better understood. And imaging techniques will improve.
Like you, I was good and ready to get away from surveillance (mine was already every 6 months) before the LCIS, ALH and ADL diagnosis. I was promised frequent biopsies would be in my future, an antihorminal, on and on.
I was thrilled to be offered a PBLM and have only more gratitude 2 yrs and 2 months have passed since that fateful surgery.
Let me express my sorrow for your friend. May she successfully move forward quickly.0 -
This link is the 2010 story, borrowed from the ILC forum, of how the Chief of Breast Surgery at George Washington Hospital decided to go against the grain of recommended surveillance.
http://abcnews.go.com/Health/breast-cancer-surgeon-makes-radical-decision-knife/t/story?id=13731902
Also, while surveillance is recommended for LCIS, there is caveat to that recommendation that the decision is to be made with the affected woman participating in the decision to PBLM or survey.0 -
tks for your reply msippiqueen. I have been following your posts about LCIS and ILS, with interest. At the time I was diagnosed, I also was<1cm, I was the one who wanted the BMX. The medical community was not in agreement, but I was fortunate to have some very good doctors. I see you have done much research on the subject. As far as I was concerned in 1994 and now. I just did not want to take the risk. There is so much that is not known even now. Regards and keep up the good work!!!
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msissippiqueen: I'm glad you put 'prove' in quotes. Proof is a very high standard.
I totally agree that some ILC is clonally related to LCIS present or previously found in a breast. This SUGGESTS that SOME ILC probably does grow from other LCIS in a breast. It does not prove it.
I believe that the authors of this and other studies do NOT propose that ALL ILC originates as LCIS.
Even if you were some how able to microscopically watch one spot of LCIS in a breast over many decades, and watch that spot turn into ILC, that would NOT prove that LCIS can cause ILC. There could be something else in the breast that caused LCIS to turn into ILC. I still propose that it is theoretically possible for multiple mutations to happen to a breast cell at the same time, and for a breast cell that is less abnormal than LCIS could mutate into an ILC. I do not know if LCIS can be clonally related to a non-ILC breast cancer. Studies do suggest, however, that women with previously diagnosed LCIS are more at risk for not only ILC, but also IDC or DCIS than the general population. (Women with some BRCA mutations or significant family history, and women who have had chest irradiation treatment probably are at higher risk for future breast cancer than are LCIS women- at least classic LCIS women without these risk factors.)
I do not know of ANY theories or models that attempt to explain why LCIS women are more likely than the general population are more likely to get IDC or DCIS. I do NOT know if LCIS can be clonally related to IDC or DCIS. (This is from my lack of knowledge; maybe someone else knows.) If we don't know how LCIS works, then I don't know of any reputable scientist at this time who would include the word 'all' any proposal about how LCIS works.
LCIS women do seem to have a higher incidence of ILC than the general population.
I do agree that LCIS (found previously or synchronously in the same individual) that is clonally RELATED to ILC supports (but does NOT prove) the idea that SOME ILC goes through a pathway that includes LCIS. I never argued to the contrary.
I do not understand how the idea that LCIS (found previously or synchronously in the same individual) that is clonally UNRELATED to ILC supports the idea that all ILC originates as LCIS.
I will not be further addressing this subject, at least in the near future.
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Understand this leaf, I never ever, evereverever attempted to address ANYTHING ELSE in my posting that ALL ILC must be pre invasive first. That has been my ONE and ONLY topic regarding LCIS's relationship to ILC. Period.
I have never ever tried to tie any other other aspect of LCIS to the fact that ILC will be LCIS first. Not the why's, what else LCIS may do, or anything else. This has been my one and only point. It is factual and is part of patient education for the newly diagnosed with cancer. Not my 'theory' as you have said, not pulling facts out of the air, as I was also accused. I simply posted A FACT. Then had my reputation was and continues to be trashed. This goes way, way past chutzpah. It is full on hate. Let it be known I am actively looking for a potential legal remedy for the libel, I now know slander is the oral version of libel.
Repeadedly you have, as above and on many previous post, entangled OTHER issues about LCIS into the topic of whether ILC is preceded by LCIS or not.
YOU attempted to link unrelated studies to the topic, trying to 'prove' an ILC may not originate from "their" LCIS. I have seen you do similar misguided efforts before.
The back slapping you-go-girl exchanges between you and beacon in particular, when you and she stridently insert OTHER aspects of LCIS into the topic, obfuscates the subject at hand.
I believe that your posting studies that attempt to support your views are sincere, but misguided at times. Like now. I can and will spend the time to pull up examples, if needed.
As you have attempted to run me off more than once, I have seen you do this to others on this forum, who are not lockstep with you. These examples are also easy to reference.
I have attempt twice to make nice with you nice via PM, once just after this topic was started and previously when I was new, even as you unfairly hammered me. You never responded to either PM.
You have posted just over 7,000 times in 5.6 years. In my lifetime I won't touch those numbers, but I am rigorous about posting solid information. You 'get busy' or 'won't post again on this topic' when clarity is needed.
Here is what I have learned from this last ass whippin'; I will have links posted as needed or when requested.0 -
OMG, your last sentence, leaf, before promising to run, UNDERSCORES how you get confused and sidetracked!
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That's it. I am removing myself from this board. Most of us come here for support-not to prove a point. I'm sick of the petty arguing. After all. I am not a statistic-I'm a human. You ladies can continue to get caught up in your self imposed drama-but I am out of here. Thanks for ruining this board for be rest of us.
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loiio, I was afraid his would happen. So sorry it got this way. My attempts to move on have been rebuffed with personal attacks and misinformation, and I will defend myself.
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Hi ladies,
I appreciate the spirited convo but when I started this thread, my objective was to help those who were contemplating a preventative mastectomy because of LCIS. On a personal level, can anyone add anything as to how they feel after proceeding with their mastectomies for those who are wondering whether they should choose that path? I honestly can still say that I think it was the best decision for me as I watch some of my close friends and family cope with the pain of chemo and other drugs. I look great and feel fantastic and I thank God for giving me a heads up with the LCIS diagnosis. Otherwise, i would not have been in a position to almost eliminate the threat of breast cancer.
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Hopefully someone is still following this blog. I was diognosed with invasive lobular carcinoma in my left breast, (early stage, I believe) (( bear with me as I am VERY new to this)). I had an MRI biopsy because there were numerious spots in my ultrasould bio. They found another spot in the left breast that they cannot conclusively tell if it is Ductal carcinoma situ or lobular carcinoma situ. I also have numerious spots in my right breast. The one biopsyed was benign. These are very small. Over the course of 45 years I have had a lot of core biopsys and lumpectomeys...all benign untill now. I am 61 years old. My surgeon said I could go through more biopsys to determine if the spot in the right breast is or is not ductal (which must be removed). It is in a different quadrant than the original cancer. My cancer is ES/PS positive but not H. NOW after all that, my question is, I am leaning toward the massectomy on the left breast with no further testing. But I am also considering a bilateral massectomy based on my prior history and the fact that there are numerious spots on the right breast. Any input would be so greatly appreciated at this point. I also want to thank you for this site which is so very full of good information for the newly diagnosed
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Hi Nanagoz,
First of all, I am sorry that you had to go through so many biopsies and lumpectomies. Are you considering a mastectomy with reconstruction? In my humble opinion, I would go for a bilateral considering LCIS is not regulated to one breast. In addition to the health consequences, the aesthetic appearance with reconstruction is easier with two as compared to one. It is difficult to mirror the "real" breast and it tends to look less uniform. My good friend had DCIS two years ago and opted for a unilateral mastectomy with immediate reconstruction for the one breast. She has had FIVE additional operations specifically to attempt to make the "new" breast symmetrical and it has been very difficult. As compared to our other friend, myself and my sister. We all chose bilateral with reconstruction and have had no additional operations. I would also suggest getting your body in good condition with exercise before you undergo the surgies since a healthy body is easier to heal...especially when we are older.
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Hi Arlene,
I'm satisfied with making the choice of having mastectomies with this diagnosis. I had my surgery in Feb 2012, my left breast which was done peventatively came back with ALH and ADH as well. I will never forget how it felt to take that brave first look at my surgery results, and breathing a sigh of tremendous relief that not only had the source of so much fear been removed but that my reconstruction was complete with one surgery!
I am three months out now and I honestly feel like I look better than before, results that I never dared to expect. The healing process has gone very well and the sense of peace that I have is remarkable. I have a healthy future and peace of mind. While my new breasts are very good, the pectoral tighness is still very foreign and the loss of feeling is just that...a loss, I am still pleased with my choice. I am thankful that I had the opportunity to work through my options and make the choice that was right for me. It is a frustrating and unclear decision making process, but not one that had to be made immediately and I am thankful for that!
If someone reading this is considering this option, there are two things that I wish I had researched further...the first is in regard to the sentinel node biopsy. I am now second guessing having that done. I wish that I would have talked it through with my surgeon to determine if I absolutely HAD to have them removed. I now have lymph fluid that pools under my arm, the nodes were healthy - thank God - but I wish that I hadn't had them removed. The second would be to research the healing process and get a realistic look at before/afters as well as a timeframe for getting back to normal. I am still working on stretches, strengthening and adjusting to my new body and it has taken much longer than I imagined. Physical Therapy helps.
Am I glad I did this...absolutely!
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Thank you MammaShells,
You are only 3 months out, huh? Don't worry about those pec muscles since they will all fall into place and feel normal after about a year. I remember trying to have a massage and trying to do mat pilates after 3 months of the exchange and I couldn't even lie on my front. I used a towel between my breast area and my stomach so that the "boobs" wouldn't touch the surface. After a year, it was as if they are just part of me and I don't need the towel anymore. I can even sleep on my tummy now. Thank you for your input
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ArleneMarie.
I am still following your posts and this thread and your blog have been so helpful. Instead of bailing completely on this thread, I just blocked those that tend to go off topic.
I am scheduled for mastectomy on June 26th. The decision was reached after 3 different doctors reviewed my pathology and history and felt this was my best option. I was reluctant to accept this as my best course of action, but in the end, I trust my doctors. I picked them based on recommendations and my MO is known to be VERY conservative. In fact, the only complaint I found about him online was that he wasn't supportive of a woman's desire to have a mastectomy. The fact he actually recommended it for me over tamoxifen spoke volumes.
I'm nervous and fearful but like I said, I trust my doctors. I've seen too many friends and family going through chemo and im grateful for the warning. I had a MRI this morning which she will use to determine if I need to have node mapping.
Your blog has been a great resource for me and I'm looking for that light at the end of the tunnel.
Thanks!0 -
Thanks for the reply, ArleneMarie. Yes I am considering reconstruction at the time of the surgery. However, I am (hopefully) going to opt for the silicone implant. I don't see my oncoligist until Monday and my plastic surgeon Tuesday. A lot depends on the treatment plan and ps's suggestions of course. It is good to hear from those who have made it through this. As far as getting in shape, my surgery is planned for 2 weeks from now..not much time for that!!! Thanks again!!
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Hi,
I am new to the BCO. My journey to this place began in 2007 when my GYN found the first lump. I had the mammo and then an US. I was then referred to a BCS (who has a son who goes to school with my youngest daughter as chance would have it). We watched this for a year and then when my anxiety got the best of me had a lumpectomy in 2008. Diagnosed with ALH at that time. I have always had fibrocystic breasts and a multitude of scattered microcalcifications. Fast forward to now, I have had 2 more surgical biopsies (left side)and a core under MRI (right side) and each has yielded more evidence of ALH which raises the stakes to LCIS. We have been going every 6 months with alternating mammos and MRI's.
Even though this last visit in June was clean, I had 3 questions to ask. What is my risk factor? BS says 20% with an increase of 1% every year....so my risk factor goes as high as 77-80% if I live to be 90 years. How many women do you treat with LCIS and how many convert? Do I have to be this vigilant for the rest of my life? Answer...YES.
PBMX was one option we considered several times, but my husband lost his first wife to BC and we weren't sure we were ready for the permanence of such a big commitment. When I mentioned to my BS this time we are still thinking about PBMX, he immediately supported it. His comments were that we could save the nipples and skin and hide most scarring and we would do a reconstruction at the same time . I'm thinking this is as good a time as any. I agonize over every visit, test, biopsy and now have enough biopsy scars that at my age (54) I may end up with even less to work with over time. If we follow through with the surgery, it will be scheduled for next May (I teach college). That gives me the entire summer to recover.
What I am most grateful for is that I have found this forum to guide me through the next 10 months. I do a lot of research for many reasons, and I know how little information there is out there for LCIS. I am looking for as much information I can garner to make the best decisions for myself and my family. Thanks for being there!0 -
Hi Auntie,
You may want to read my blog from beginning to the end so you will get a feeling of what you may go through if you decide on a PBMX. I tried to make it as light but as honest as possible to give women an insight of what will occur during the differnt steps. I have never looked back. ALways looked forward after the mastectomy and I am loving life (if that helps at all). PM me if you would like to chat.
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Hi nanagoz,
I agree with arlenemarie. Research studies show ILC has a greater incidence of occurring in the opposite breast than IDC. I think in the past 6 years I have read every journal article there is (in English) on the subject and the leading researchers typically recommend BMX. David Page from Vanderbilt University is considered to be one of the tops in the field if you want to look into it further. Personally, I have yet to undergo any MX, but it is on the near horizon. Best wishes to you.0 -
Hi Autinems! While I have not studied ILC rigorously (since I don't have it), I wouldn't be surprised if most authorities recommended BMXs for ILC.
I think the picture is more clouded for LCIS.
I think if you heard from your doc that your lifetime chance of getting breast cancer (assuming you don't have a severe family history of breast or ovarian cancer, or a personal history of intense chest irradiation) was 20% PLUS 1% per year, then I think it is probable that your doc either misspoke or there was some misscommunication with you.
In a nutshell, I've seen studies suggest that the rough lifetime future risk of a person with classic LCIS (not of classic LCIS women who were recently diagnosed with LCIS) was described as roughly 20-40%.
First off, if you have PLCIS, then I really don't think we have an accurate enough idea to propose a number. PLCIS is thought to be more aggressive than classic LCIS.
For classic LCIS, there are few long term studies.
We have several models, but, really the subject of breast cancer prediction is in its infancy. What does this mean? Well, for the average, run-of-the-mill women in the USA, we know reasonably well how many women in that group will get breast cancer. However, even in that very populous group, of average, run-of-the-mill women, we have VERY LITTLE idea whether any individual, particular woman will get breast cancer. http://www.ncbi.nlm.nih.gov/pubmed/17148763If we have very little idea whether any individual woman at average risk for breast cancer will get breast cancer, then, since LCIS is an unusual condition and we have much less data than for an average woman, then we really have very little idea about the risk of an individual with LCIS.
Some studies have found that the 'average' age to get diagnosed with LCIS is about 50 years of age. (In this smaller study the average age was 55. http://www.ncbi.nlm.nih.gov/pubmed/22268169) Since women are roughly expected to live until about 80 or 90 years old, that's about 30 or 40 more years.
There are only about 2 studies that I know of that have looked at the future breast cancer risk of women with (presumably classic) LCIS. One is the Chuba study, which found a minimum risk of about 7% over 10 years. http://www.ncbi.nlm.nih.gov/pubmed?term=Chuba LCIS Since the average LCIS woman will not live more than 40 more years, that's a minimum of about 30% lifetime risk.
In another, shorter study of about 6 years, it found roughly 15 out of 250 LCIS women got breast cancer over this 6 year period, none of which were worse than stage 2 at diagnosis. This ends up being roughly 0.5-1% per year, which simplistically multiplied by an average of 30 or 40 years gives roughly 15-40%. http://www.ncbi.nlm.nih.gov/pubmed/17206485
There are breast cancer prediction models that can give you very high risk rates, such as http://www.halls.md/breast/gailmods.htm, but if you read the fine print, it says that his model has NOT been compared to populations, nor has it been peer-reviewed. This caveat is important, especially since LCIS is an UNUSUAL condition (one paper I read estimated that the incidence of LCIS might be something like 1:10,000, but this is a very rough estimation). I have seen no other models that give me this high of a risk. If you have a significant family history, suggesting a deleterious BRCA mutation, or have a history of intense chest irradiation, then you may be at much higher risk of breast cancer anyways.
I have a weak family history, and my onc told me that I had a lifetime risk of about 30-40%. I opted to take tamoxifen, which may cut that value roughly by half. Many others may opt to have BPMs.
Treatment is a very individual choice. I will not challenge anyone's choice as to what treatment is best for them. That is up to them to decide what is best for them.
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Correct me if I am wrong (and I am sure you will Leaf
), but the only study that has been done for tamoxifen is over a ten year period where there is a significantly reduced risk of having Invasive breast cancer. The reason I refused to take the drug was because I was only 47 at the time and to take such an extreme drug where the results are only good until I would be 57 seemed too short term and poisoneous to my body. My sister is on tamoxifen tight now after chemo and herceptin and has had nothing but side effects. I chose to go the route of a mastectomy becuase I wanted the problem of potential breast cancer to be eliminated from my life without any health hazards in the future. 0 -
I read studies on this subject. My onc handed me one when I presented to him with pleomorphic LCIS. Unfortunately plcis is so uncommon there really isn't much on it.
What I recall is that the tamoxifen, when taken for 5 years, has a longer range and lasting protective effect. For better or worse it makes some fundamental changes in women's estrogen processing.
Taking it longer than 5 years also apparently increases the risks from tamoxifen. For the combination of these reasons, 5 years is the limit. Some women finish tamoxifen, are by then post menopausal and go onto a different SERM, like Evista.
I think each woman has to make her choice on this tough decision. there is no one answer for everyone. I did BMX. At the time a personal friend of mine tried to dissuade me. She is an anesthesiologist/pain management physician and treats many patients who have post mastectomy pain syndrome. Obviously she sees only the worst of it, and she was worried for me. I was very fortunate to come out of surgery with zero side effects and zero pain. But not everyone is that lucky. It is by no means a slam dunk decision.
I wish they would do some studies of lower doses (at present everyone gets 20mg) and see if it is equally effective. That will never happen though, as the cost of such a study is very high and tamoxifen is a generic drug.0 -
Arlenemarie, I have a question: from your profile it looks like your LCIS was negative for all hormonal receptors. That is highly unusual for LCIS! In your case, did they even suggest tamoxifen to you? Considering your LCIS had no estrogen receptors, I don't see that tamoxifen would have helped you, so you would have suffered the side effects with no benefit.
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The only info I know of about tamoxifen in LCIS women is the STAR study. http://www.ncbi.nlm.nih.gov/pubmed/19213563 (?started 1999) where about 9% of the patients had LCIS. IIRC, I couldn't dig out from the study many specifics about antihormonal treatment in this LCIS group. This study looked at a group of women who were at higher risk for breast cancer due to many different reasons.
In some patient groups, such as in metastatic breast cancer, they can use tamoxifen for longer than 5 years, as long as the patient survives, if it is effective, and if it is tolerated. Its all about risk vs benefit.
This Cochrane study looked at early breast cancer and found that tamoxifen treatment had benefit 10 years on when the tamoxifen was taken for 5 years, as beacon says. http://www.ncbi.nlm.nih.gov/pubmed/18843611 However, I do not understand the 'WITHDRAWN' title of the paper. I don't know how long the preventative effect of tamoxifen may last.
I have seen a few papers (not many) that have looked at 5mg or 10mg tamoxifen/day. http://www.ncbi.nlm.nih.gov/pubmed/12706357 IIRC, there were also some done in Italy.
There are risks and benefits from every choice of treatment for LCIS: watchful waiting, antihormonals, or BPMs.
I am NOT trying to push antihormonals, nor any other treatment, on ANYONE. Some people find tamoxifen totally intolerable; there is an increased risk of blood clots/strokes and endometrial cancer. Others have no or very few adverse effects. Treatment is a very personal choice.
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That's a good question. I should look it up on my biopsy since I think it defaulted to zero on my Breast Cancer.org profile. When I was told by my breast surgeon that they found LCIS, her immediate response was to meet with an oncologist and start tamoxifen and that a mastectomy would be those with extreme cases. After I met with the oncologist and he told me that I could use tamoxifen for 5 years only to reduce the risk for ten years, I asked him about a PMX. He didn't even blink. When he found out my mom died of breast cancer, that I had dense, cystic breasts and that I was only 47 (at the time), he said that he would highly suggest having one. And so the ball started rolling....
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One of my friends was in the STAR study after her DCIS dx. She still does not know if she had raloxifene or tamoxifen during the study. She had lumpectomy/radiation/serms and has not had any recurrance for many years now.
When I was dx I was 47 (like AM) and premeno. So raloxifene was not allowed for me. If it were I might have skipped the BMX and taken it. From the study I learned that it has a lower incidence of endometrial cancer and a lower incidence of cataracts.
I was unhappy about tamox when I learned it was a class 1 carcinogen per World Health Org. My onc was very laid back about the endometrial risk and told me, "well no one dies from it, we just do hysterectomy and that's the end of it." Easy for him to say, I thought!!
Arlenemarie, my case is much like yours. My mom died of bc age 59, her two aunts had bc, one died age 60 and the other had a timely mastectomy and lived to 83. My breasts were dense, cystic and I have no kids. That was enuf for me! Interestingly, my mom had an identical twin sister who never had bc (also she had no kids and my mom had 3). So the genetics are not totally at fault. My sister and I both tested BRCA negative. None the less, I didn't mind the loss of my breasts and am much happier this way.
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Hi Leaf,
I pay pretty good attention to my BS when he speaks and I also know how to read biological journal articles such as the following quote:
"Chemoprevention should only be considered after an informed discussion of the risks versus the benefits.[21,22] For example, a woman who has lobular carcinoma in situ has a Chemoprevention should only be considered after an informed discussion of the risks versus the benefits.[21,22] For example, a woman who has lobular carcinoma in situ has a 1% per annum risk of developing invasive breast cancer over 30 years. Therefore, if she took tamoxifen for a period of 5 years, at the end of 10 years she would reduce her risk of breast cancer from 10% to 5%."
Which states in a nutshell, that if a woman aleady has a 20% chance of developing ILC or DCIS and that same woman, opting for vigilante observation, her risk factor rises 1% per year on top of the original risk factor.
No, I don't have a strong family background. My paternal grandmother had a mastectomy in her mid-50's and outlived her cancer. My mother died young from something unrelated, and I have no sisters. I like to call my lack of history, a blank history. It doesn't raise my risk factor or even raise red flags to any warnings, but those of us who have these BLANKS in our families seem to take it harder than those who have those histories to follow. I think it's scarier not knowing than having the opportunity to know. But I can't afford the genetic testing right now, so we shall see how it goes.
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