Questions for those who have considered prophylactic mastectomy
Comments
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Hello ladies,
I am posting this in both the High-Risk and LCIS forums. I need a little help from those who have considered prophylactic bilateral mastectomy. I met with my oncologist yesterday, and it is now time for me to consider this. I was diagnosed with LCIS 6 years ago, and have tried all the hormonal treatments that I am eligible for. None has worked, so here we are. It is not imperative that I have the surgery, but it is a legitimate option at this point. (I have actually been thinking about this for several years, so it isn't like I was just hit with it.)
I am still very undecided, although I am leaning toward doing it. I know that if I do it, I do not want reconstruction. That's about the only thing I'm sure of right now! If you have considered this option, it would help me very much if you could tell me a little about the following:
1. How did you arrive at your decision? (either to do it or not)
2. How long did it take you to decide?
3. Did you talk to your family and friends during your decision-making process?
4. If you did, how did they react?
5. How did your husband or partner feel about it?
6. Are you satisfied with your decision?
Later on, I'll probably have questions about more practical matters, such as recovery time, things to have on hand, etc. But right now, it would be most helpful to have some insight into how others made this decision.
My oncologist has referred me to a breast surgeon, although there is no real hurry. However, since I have done so much thinking about it already, I expect that I'll decide one way or the other within the next few months.
Thank you all so much for any help you can give me.
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1. How did you arrive at your decision? (either to do it or not). I'm still in process (I have other issues), but so far have tried to look at what I am guessing is my risk for breast cancer (I think around 0.7-1% per year is a reasonable figure).
2. How long did it take you to decide?Its been over 2 years since my diagnosis.
3. Did you talk to your family and friends during your decision-making process?Yes, a little.
4. If you did, how did they react? My cousin said she wouldn't do it at all because she knows a woman who had BPMs who is very unhappy she had it. (I assume she was BRCA positive because LCIS is rather unusual.) I had a radiology clerk recommend I have BPMs because he knew a fellow coworker who had LCIS and had BPMs. I was angry that a stranger would say such a thing to me when he didn't know me at all. I found in general, other people reacted emotionally, and couldn't accept that I felt confused about making the decision. So I keep them out of the loop.
5. How did your husband or partner feel about it? Don't have currently.
6. Are you satisfied with your decision? Decision isn't final. I have other issues, so its hard to say. -
Lucky2-In answer to your questions about deciding whether to have a PBM,, here is how I went about making a decision:
1. In Nov 2007 when I was diagnosed with LCIS after an excisional biopsy for nipple discharge.Things were benign and I was sure I would just be watched carefully with 6 month mammos and sonnegrams. I spoke to a rather famous oncologist and wasted almost our entire session getting her to agree that "LCIS wasn't cancer." I was dealing with semantics and denial
2. Then my internist suggested I get genetically tested...I have two daughters. Although I ultimately didn't have the BRCA gene, when I filled out my history info I realized that my mother had bc my grandmother, my great grandmother, my mother's only two brothers and a 22 year old first cousin had all died of some sort of cancer! I personally felt that my odds of getting invasive cancer were much higher than the average Josephine on the street with LCI . I also came to this board and realized that for many women, careful watching was very anxiety provoking.
3. I asked my oncologist's office to recommend a therapist with a bc background because at that point I was a wreck. The therapist clarified things for me. Here is how she put it, "You have to find out what you can do to give yourself the best chance of your LCIS not turning into invasive cancer, and if it is a PBM, you have to decide if you are willing to do it."
4. Finished, it was clear to me that I was willing to have a PBM which gave me the best odds of not getting invasive cancer. The entire decision making process lasted from Nov to my surgery on Feb 12, 2008. In between I found my mother's path report and saw that although she lived with cancer for 19 years, she had 4 recurrences and her DCIS had become invasive.though she had had a single mastectomy. The path report really convinced me that for me, a double mast was the answer. I TOLD my husband and daughters what I was going to do. It was always my decision. My husband has been great. He is a retired Oral Surgeon and thinks that I made the best decision for me.
5. I had a failed reconstruction after my mastectomy and had to have everything taken out on March 13, 2008. In retrospect I wish I had just had the mastectomy. My path report for the PBM showed LCIS on both breasts but nothing was "cooking" yet. I am so glad I had the PBM as I am a worrier and know that I am not able to repress my worries well. I know the PBM was right for me even with the messed up reconstruction. Oh, and I never asked my friends what they thought. I don't know why but I guess I was very aware of how personal this decision is and how no could really decide what to do but me.
femme -
Hi!
1.It took me more than a decade to have bilats. I had many biopsies ( over 15 total ) including 7 major excisionals.Until the last 2 years, I never would have considered masts. But Never say never. I was on the " DRIVE THRU " window plan of biopsy surgeries. Every time something new and funky.
2. When MRI showed dramatic changes in my breast over only 3 month periods I started considering surgery. I could not get medically cleared to take hormonals for prevention. My breasts were extremely dense, among the most dense my high risk clinic had seen. ANd my breasts were having rapid changes in the last 2 years. So much so, the oncologists were concerned early detection was not something they could guarantee. A final MRI that showed vast rapid changes similar to invasive cancer made the mastectomies warranted.The doctors could not tell if it was the REAL DEAL or not. A biopsy would have left practically nothing of one breast. I lucked out, as they were filling me in on my chemo options before surgery...and I did only have LCIS and all the other " less than cancer changes".
3. I spoke to very few family or friends. My husband and I discussed options, but we were both concerned with having a long future together.
4.I only had reactions from a few people because I did not talk about it much. In my case it was a good thing. The reactions I got were very dramatic, and I got the feeling people do not truly understand that CANCER is not a clear cut territory. That is scarey to those who have not had life bring this info their way....and several said to me: " aren't you angry you lost your breasts..." not understanding that the changes going on in me pretty much convinced the researchers that in my personal case it was more a matter of " when" not " if" my situation would get higher stakes.
5. My husband really loves me, is an exceptional guy, and never seemed as upset as I was about the physical changes. It did not hit me emotionally until about 6 months after my last reconstruction surgery.
6. I am very satisfied with the fact that my surgery had good timing and that I am healthy. I got really great reconstruction ( and if anyone lives in the Carolinas, I recommend DR LAURA GUNN in Durham. GREAT artist, GREAT surgeon, GREAT person), and had a supportive team of doctors. SOme days I cannot believe my luck. -
Lucky: I had cancer in my right breast that was advanced, inflammatory and triple negative. I have yet to get my genetic test results back. I realize my situation is not exactly like yours however I hope this is helpful.
1. I knew I wanted a bilateral the moment my oncologist told me I needed to have a mastectomy. After doing research on my diagnosis it just reinforced my original thought.
3.I told my husband what I wanted to do and I was very lucky that he supported me. My sister in law said it was a good idea. Some co-workers didn't know what to say.
4. I am very satisfied with my decision. I am 6 months out of treatment. I did not have reconstruction.
It is a very personal decision and one that everyone deals with differently.
I wish you the best, Jacqueline
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Lucky I am in the same place you are right now thank you for posting your questions. I just met with the breast surgeon for the second visit .The genetic counselor left me a message to call ,and am waiting for the plastic surgeons office to call me.
1. I arrived at my decision for different reasons.
Family members that have fought the beast and are fighting
reading researching, the surveillance, biopsies, first degree family
history.
2. As soon as the word Carcinoma appeared in my path report.
That was jarring to me, made me mad and made me not want to wait and watch any longer.
3.Not a lot of support at home. Only from my sister, she is a 3 yr survivor.
I have survivor friends that are wonderfully supportive. But don't include others in my decision making I think they would have to had walked in my shoes to really understand.
I am scared and resolved in my decision to have the bilat mast. and know it is the best decision for me.
Wishing you the best ,
Carrie
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Lucky,
I definitely feel the way you do right now. I am in the process of moving ahead with PBMs and reconstruction. I will see my second PS in a few weeks.
1. I am in this stage because I wanted to get off the merry-go-round of 6 month testing/biopsy, I wanted to avoid having to have urgent surgery, I wanted to be able to have the least serious form of surgery (skin and nipple sparing) if at all possible, I did not want to have to go through chemo or radiation, and I wanted to be able to schedule my surgery during my summer off from teaching. If I kept up the watching, and something more serious showed up, I would have to take too much time off from work.
2. I was diagnosed with ALH in 4/2006, LCIS in 1/2007. I began seriously thinking about this in 9/2007.
3-5. Yes. I talked to my mother and husband and some others as well. My mother was against it until I told her how much of my breast has been removed already. Then she realized what I was going through. My husband is totally supportive.
6. Still to be determined.
Anne
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Lucky-
I was just diagnosed in November and have opted for no treatment at this time. My sister in law who is a physician recommended bilateral masectomies but that was based on her mother's experience with DCIS. I don't think she was as familiar with LCIS.
Can I ask a couple of questions of you - you have had the diagnosis of LCIS for six years and hormone therapy - does that mean tamoxifen? If so, what do you mean when you indicated that it didn't work? I am sorry if you meant that you now have developed invasive carcinoma? If not, I am curious about what other changes may have made you decide to consider the surgery? I thought that LCIS was something that would be with you forever, that you just lived with and hoped for nothing worse. I am sorry to ask so many questions but you have really sparked my interest, I guess I still have a lot to learn. Thanks, Laurie
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Hi, Laurie,
Not to worry. Someone else asked that on the high-risk forum. I was not as clear as I should have been. This is what I meant:
1. I couldn't tolerate either tamoxifen or Evista. (Although I'm still premenopausal, my doctor wanted to me to try Evista anyway, which I did.)
2. I am in a research study, and as part of that have random fine-needle aspirations done every 6 months. This gives us a good idea of what is going on at the cellular level. Although no invasive cancer has yet been found, the test results indicate worrisome changes that are increasing over time. Anne (awb) mentioned that there isn't a definitive test, which is correct, but being in this study gives me the closest thing currently available. There are certainly many limitations, but it's the best info I can get. I hope that eventually this will be available to anyone who needs it.
So that's what I mean about hormonals not working. My doctor and I have discussed and rejected one other hormonal option, which is to take Lupron and Arimidex. Some other medical issues preclude this for me.
LCIS is with you forever, as you say. It is only because of the study that I know about the cellular changes. If you're interested in the study, probably the best thing to do is call the breast center at a major teaching/research hospital near you and ask if they are doing it. The University of Kansas is, although that isn't where I go. I think that may be the original study site. You can also google "RPFNA study" to see some journal articles. I'm sorry not to be able to provide more info about this, but there isn't a whole lot out there.
Bilaterals used to be the standard treatment for LCIS, but not any more. They are appropriate for some women, though. Are you being followed by an oncologist? Many women opt for close follow-up rather than medication or surgery.
One of the problems with LCIS, it seems to me, is that while there are so many different treatment options, none of them is really all that great. I hope that will change in the future.
Thanks so much, and good luck to you.
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Lucky:
I also participated in that study, as I know my cells were sent to U of Kansas.
It is not diagnostic, but it does give participants a view of changes and progressions of changes on the breast over time. My oncologist explained that cancer does pop up out of nowhere and is probably the result of many, unknown at this time, changes in cells. The study is also a way to contribute to a cure or to a better approach to prevention: without our cells, progress in science will not occur. My experience with the study was really good on many levels. It made me feel all the surgery up to that point could be used for a higher purpose.
Moogie -
csp/Carrie,
Do you have LCIS and nothing else? -
Lucky-
I too have thought about PBMs. I have only been diagnosed with LCIS since the beginning of March. I'm 51 yrs old with an immediate family history of cancer (4 of 7 immediate family members (two sisters and both parents) with different cancers) My mother died at 56 of breast cancer and one of my younger sisters was diagnosed with ovarian cancer last year. Being proactive I had the BRCA testing done which came out negative (I have read an article that says researchers don't know what gene is mutated to cause LCIS so the BRCA test won't show it) and went on to do a breast MRI 6 mos. after a clean mamogram. The biopsy came back with ADH and papilolomatosis. I had a lumpectomy to remove those and the pathology came back with LCIS. I have had appts. with several oncologists that talk about evista and tamoxifen and have gone to several surgeons that talk about PBMs. I finally found an oncologist that said it would be better to have the PBMs. From day 1 I have thought PBMs is the way to go. I based my decision on: 1) I feel like I'm playing russian roulette with a loaded gun with no empty chambers by waiting and watching and while we are on that topic 2) I'm waiting and watching it do what?????? MRI's and mamograms only show LCIS when it becomes cancer- what kind of monitoring is that? 3) I don't want to play the coulda, woulda, shoulda game 4) I would rather be recovering from surgery than recovering from surgery, chemo and radiation therapy 5) Right now before it's cancer I feel I have a choice 6) I feel at 51 I could recover from surgery easier than if it turned into cancer 20 years from now. Stick a fork in me I am so done with monitoring!
I have researched online, spoken to numerous doctors (physicians, OBGYNs, oncologists, surgeons, oncology surgeon, plastic surgeons) and no one has a direct answer about LCIS. The plain and simple truth is no one really has the answers on LCIS yet. I have asked God to show me what I need to be doing and I feel peace with my decision to move forward with PBMs. It is definitely an individual decision. There is a great book out called "Pretty Is What Changes" written by Jessica Queller. A young women's quest to make the decision on whether to have PBMs because of a positive BRCA test. Wonderful, quick read that all of us can identify with.
My husband is supportive as well as family and friends. My father thinks its overkill but even he had part of his colon removed when he was diagnosed with colon cancer.
I am so glad all of you postted your comments and stories- sometimes I did feel like I'm out there alone with the thoughts of PBMs.
I'm lucky enough to be living in Houston by MD Anderson which is where my pathology reports are being sent so I can set up an appointment with an oncology surgeon and plastic surgeon. I'm looking at having them done the beginning of July. As far as having nipples tatooed on after reconstruction I'm seriously considering having starfish tatooed there instead. What do ya'll think?
On another note- I know one of the dentists at UT Dental Branch in Houston that is working with other Drs. and some at MD Anderson working on protocols for saliva testing for breast cancer. Yes, hopefully soon we will be able to just have a simple saliva test to determine if you have breast cancer.
My prayers are with all of you,
Lois
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Lois, thank you so much for your post. I have been out of town and am just now able to reply. The things you based your decision on are exactly the things I've been thinking. I especially like "waiting and watching it do what?" I've been asking that question for a while now. I guess the argument is that if something invasive develops, they will catch it early. This is not really good enough for me. I've been watching my test results get a little worse each time for a couple of years now, and now I'm thinking, "enough watching--time to do something." If I don't have the PBM and then later develop invasive disease, I will be kicking myself for not doing something about it when I had the chance. And, like you, I think I can recover better from surgery now than years from now.
But. . .I still have not decided what to do. It is such a huge decision. I see the surgeon in a couple of weeks, so that will give me some good information. I hope to come to a decision after that.
Thanks again to everyone who has replied. You girls are the best!
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lopalermo,
I love the starfish idea! I heard of someone who got winking eyes.
lucky,
As you may realize from my post, I have "tabled" my PBMs for now. It is not so much a change of heart as a feeling that things were moving too fast for me to feel comfortable. I asked my DH whether he was glad I wasn't having the surgery this summer, and he said he wasn't sure. He said all my reasons for doing it sounded right to him. I've had pretty much the same reaction from my mother and bs, but friends are all happy that I'm not doing it...yet.
So, I'm back in the waiting and watching game for now. My bs said no testing till Feb, but then I read the post quoting an "expert" that makes me question that. I see the onc tomorrow for 6 month check. I'll run all this by him and see.
Thank goodness for this site.
Anne
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Lucky,
The other thought that struck me the other day was what my family goes through every time one of us has to go through surgery, chemotherapy and radiation and the worry about whether the cancer will come back. By just having surgery I hope I am sparing them the stress of yet another family member going through that whole process. Most importantly, in the end I know God is in control.
I have an appointment scheduled at MD Anderson next week so they can do their own mammograms and ultrasound and move forward.
I use to joke about knowing when to retire which was when you spend more time in the Dr's. office than you do working. I really was joking but I hope I don't get caught in the medical revolving door that you can't seem to get out of.
I respect everyone's individual decisions on what to do. Please keep your thoughts and information coming. I'm so glad I found y'all.
Lois
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Lucky, what a great conversation you have started. I am considering the same question but from a slightly different angle ... a rather more superficial one. In line with that line of thinking I looked at this website, which is very interesting: http://breastfree.org.
I had my left breast removed in December 2007 after a dx of ILC and I don't like having only one breast. Although my mastectomy is still giving me trouble, I think that I would prefer to have no breasts to being lopsided. The reduction in risk of recurrance of ILC is somewhat of a side-issue for me as the pathology reports suggest that I have a low risk of recurrance.
I may have to have further surgery on the site of my original mastectomy and am thinking of getting the other one done at the same time, although I had intended to wait at least a year to make sure that my original decision to not have reconstruction and to have a prophylactic mastecomy were right for me.
I have discussed the issue with my husband. He seemed reluctant about the whole idea. Does this sound strange .... he is a little homophobic and I am worried that if I am flat chested, he might see me as, well, boyish.
It is truly interesting to see what you and others think about this issue.
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Lois, I know exactly what you mean. There is quite a bit of cancer in my family, too, although we seem to have the "variety pack"--usually only one or two cases of any particular kind. There's a lot of it, though, over 4 generations. The treatment process is difficult for everyone.
I'm glad that you are going to be able to go to MD Anderson, and I hope they will give you some good information. I will be thinking of you next week.
Kestrel, I don't think your reasoning sounds superficial at all. We each have to do what we feel comfortable with. I would not want to be lopsided, either; I have enough trouble with balance as it is. I've looked at the pictures on breastfree.org (a great site!), and my reaction was the same as yours at first. I thought, "I'm going to look like a little boy!" My husband says I won't, but he hasn't looked at those pictures yet. He has told me that he will, but I don't think he's ready quite yet.
I am a little surprised that this part of it is bothering me so much (looking like a boy, I mean). I still do not want reconstruction, for several reasons. The recovery time is longer, I don't want implants, and since I am fairly small, I don't think I have enough body fat to do that kind of recon, even if I did want it. My oncologist said that if I wanted to do that, they'd probably make me gain weight to have enough fat to take. I worked too hard to lose it and don't want to put any back on, especially since I am high-risk for diabetes too.
The idea of wearing prostheses does not bother me. I will probably go for a B-cup (I'm a C now), as I've always felt a little top-heavy. I know that I'll look fine in clothes and nobody will be able to tell. But I'll still feel like I look like a boy when I'm not wearing the forms. I guess I'm going to have to give this some more time and thought. This is not an easy decision for any of us, but my doctor would not have brought it up with me if she did not think that I really need to consider it.
For now, I am trying not to get ahead of myself. My appointment with the surgeon is in a couple of weeks, so after that I hope I'll have more information on which to base the decision. Again, I thank all of you ladies who have listened and shared your experiences. I am so glad that we have each other!
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Kestrel,
Thanks for the breastfree website. I have a friend who will be interested in the site since her surgeon told her he could only do a single sided mastectomy for her ILC since the other breast did not show any signs of ILC. Go figure. Every oncologist I have talked and every article I've read said that if LCIS was in one side there is a 50% to 90% it's in the other as well. Even though I know they are talking about LCIS is it really a strectch to say ILC as well? I've done a lot of research on LCIS but not as much comparing the LCIS and ILC. A 2004 study also stated that LCIS may very well be a precurser to invasive breast cancer not just a marker (I found this in the MD Anderson surgical oncology handbook). I'm still reading, researching and asking questions.
Although I have not had a single side mastectomy I can understand how you would feel lopsided. What type of problems are you having with your mastectomy?
Lucky- I'm in the same position as you with the body fat. I don't have enough to remake mine the size they are now. I would like to be at least the same size and back to normal as much as possible. I even spoke to a lady in Colorado that told me the surgeon made a dart like incision just on the side of the breast to do the mastectomy and then put expanders in at the same time. She said she liked the expander so much they have just left it in since its basically made out fo the same material as the implant. My appt. next week at MD Anderson is just for ultrasounds and mammograms. The appt. with the consultant surgeon is on May 28. I'll keep you posted. We can compare notes on what the surgeons say. Thanks for your thoughts and prayers.
Lois
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Hi lopalermo.
The mastectomy site has developed what the surgeon says is a liquid hematoma. I can't find anything on the internet about it other than it is a very rare complication. Effectively, there is a blood clot in the site that sucks up liquid causing the breast area to swell. Although my surgery was five months ago, I still have to have the swelling aspirated and the stuff that comes out is bloody, not clear like a seroma. This also means that a sac has probably developed between the skin flaps and the chest wall which means the skin will not adhere. Also there is stretching of the skin and I don't want to have a reconstruction so, if ever the site heals, the skin will be loose and wrinkled. Feeling is coming back to the breast area, which is not good as it is uncomfortable and itchy.
The problem started about the same time as I started chemo.
The surgeon might have go in and fix it all up somehow and I thought that this would be a good opportunity for the other breast to be amputated.
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lopalermo,
LCIS and ILC are not as closely related as you might think. ALH and LCIS are pretty much different degrees of the same thing, but LCIS does not necessarily turn into ILC. In fact, I think they find IDC about as often as they find ILC in patients with LCIS. Therefore, if your friend had ILC, but no signs of LCIS, doing one side probably makes sense. LCIS is almost always found on both sides, ergo, bilateral is more logical than unilateral. It's not to remove the LCIS, because you can live without removing all signs of LCIS. It would be to reduce the RISK. The risk would be on both sides.
Anne
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Peaches,
Thanks for clearing up my confusion with the LCIS, ILC and IDC. The only thing left is the 2004 study that seems to suggest that having LCIS could be more than just a risk marker but an actual precurser to breast cancer. Maybe one day they will know a lot more about LCIS.
Lois
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You hope. I do recall reading that "classic" versus "pleomorphic" LCIS was important to know. Pleomorphic is possibly more likely to actually "morph" into invasive, while classic has not shown that tendency. Since I have classic, I feel slightly less anxious about its presence in my body. If I had pleomorphic, I would not have postponed my PBMs.
Anne
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hmmmm....I wonder how I get that information? From my path report?
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Peaches,
How did you find out what type LCIS you had? I have the reports but it doesn't state what type it is.
Kimber- Love your little dog picture!
Lois
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On the first pathology report where the dx was of LCIS (a stereotactic needle), it says under FINAL DIAGNOSIS: "several foci of lobular carcinoma in situ, with classical morphology..." The same wording is found in the excisional biopsy report.
I looked up everything it said and that's how I came across the reference to the difference between the two kinds. Classical means more regular in shape, while pleomorphic is more varied - I guess more atypical. If it's not on your report, I don't know where else it would be.
Anne
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I have both pleomorphic ILC and pleomorphic LCIS. At first, the surgeon and onc recommended bilateral mast. Then they decided that lumpectomy alone was OK, and that's what I went with. I struggle every day with my decision, and realize that most women in my shoes would've gone with the bilat mast.
My reasoning on sticking with the lumpectomy was:
1) the surgeon said I would still have a 5% of local recurrence with the bilat mast, and that in my case, my tumor was most likely to recur in the chest wall anyhow b/c it was growing into there already. Mast wouldn't prevent chest wall recurrence.
2) Tumor board reviewed my case 4 times (glad I wasn't the only one who was confused by what to do!), and finally decided that I was at more of a risk for mets than for local recurrence. I decided mets bothered me more than local recurrence anyhow and that I could live with semi-annual monitoring.
3) Specifically for me, I am not comfortable with prophylactic mast. I feel like I can't go through with the surgery and reconstruction unless I am medically backed into a corner, so to speak.
So that's my situation. It's different than having LCIS alone, obviously. But even with the invasive and the pleomorphic issues factored in, I'm still living with my lumpectomy. Maybe down the road I'll regret my decision, but I agonized over it for quite some time, and that's where I am with it right now.
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Hi . I hope you don't mind a very newcomer (in many senses of the word) joining this conversation--perhaps a fresh point of view--and I'm sure some wise points of view from you all. I go tomorrow for genetic testing for BRCA gene mutation. I have already decided that if positive, I will have subcutaneous bilat prophylactic masect. with reconstruct., and oomphect. (already had uterus and cerv removed when in my 20s). Way too much breast and ovarian cancer (metastatic, and deaths even with tx), as well as uterine, pancreatic, colon, and serious form of carcinoma with lymph node removal. My sister was just diagnosed with aggressive breast cancer 3 wks ago (both breasts), and will be strating chemo, them bilat masect with some lymph node removal & oomphectomy, followed by radiation, then breast recontruction. She will have a very difficult journey/process ahead. If I test positive for BRCA gene alteration, I consider myself fortunate to have the opportunity to reduce my risk of breast cancer so dramatically, and illeminate my risk of ovarian cancer. The process is one I won't look forward to, in terms of pain--will miss my own breasts; but have been so fortunate to have already had my sons, the experience of breastfeeding, and already be in menopause at a young age (am now 45). Though it is a serious decision, for me it would be a way to lower my risks substantially, have a sense of relief, still maintain breasts that I find at home with and beautiful to my eyes, and not to have to (ever hopefully) go through the process that my sister and so many other valiant , beautiful women go through each day who would have loved the opportunity I will be getting to take a peek at the future--before the need for chemo or radiation, etc...and take steps to prevent such a long and difficult process. I lift you all up unto the Lord, and offer applause for each of you in your own journeys. Please bade my sister well--she is such a lovely and loving woman. My plan, is to be there for her in whatever way she needs-- as imperfect as I am, for her to be able to be imperfect in her own journey when she is with me--real, scared, teary, laughing, tired, whatever--- having one person that she doesn't feel she has to protect or be brave in front of. To you ladies... may all your pains, be champagnes!
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SORRY ABOUT YOUR FAILED RECONSTRUCTION BUT WHAT HAPPEN. I JUST HAVE DOUBLE MAST/WITH DORSAL FLAP RECONSTRUCTION HAD TO DO THIS WAY BECAUSE THIS WAS MY SECOND TIME WITH BREAST CANCER. FIRST TIME I DID LUMP. /WITH RADIATION. AND THEN 4 YEARS 10 MONTHS LATER FOUND ANOTHER TUMOR MY FIRST ONE WAS UNDER CM AND TRIPLE NEG. I DID VERY WELL.
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SORRY ABOUT YOUR FAILED RECONSTRUCTION BUT WHAT HAPPEN. I JUST HAVE DOUBLE MAST/WITH DORSAL FLAP RECONSTRUCTION HAD TO DO THIS WAY BECAUSE THIS WAS MY SECOND TIME WITH BREAST CANCER. FIRST TIME I DID LUMP. /WITH RADIATION. AND THEN 4 YEARS 10 MONTHS LATER FOUND ANOTHER TUMOR MY FIRST ONE WAS UNDER CM AND TRIPLE NEG. I DID VERY WELL.
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Welcome, herecomestsun. I am so sorry about your sister--please tell her that we all wish her well. There is lots of support at this site if she would like to come here, too.
If I had your family history, I would do exactly as you are doing. It is good that you are getting the genetic testing; I hope that the information it provides will be helpful to you in making your decision.
I will be thinking of you as you go for your testing. Please let us know how you and your sister are doing.
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