LCIS
Hello, This is my first time ever participating a discussion board. I have been diagnosed with LCIS, with a risk factor of 70-80%. My maternal grandmother died at 52 from breast cancer and my paternal grandmother had ductal cancer treated by having a bilateral mastectomy. I was tested for the BRCA gene and I am negative. I have benign changes going on in my breast since my diagnosis. I have a lump they believe to be a cyst that has increased in size, microcalcifications and now my nipple has a small spot that is pushed in, like a small dimple. I was told the dimple could be caused from a mammogram. It scares me. Every time I go the have a mammo/MRI there is something new, although believed to be benign, it is still frightening.
The breast surgeon told me I have 3 choices, surveillance and Tamoxifen or a bilateral mastectomy. The breast surgeon feels that she can monitor my breasts and catch any changes early. This concerns me because I have very dense breasts and from what I have read it can be very difficult to find anything early.
I have chosen not to do tamoxifen because my aunt died at 35 from a blood clot and my 36 year old brother just had a stroke from a blood clot. Tamoxifen scares me, I feel like it is trading one problem that could potentially cause another (because of my family history).
I was trying to do the surveillance route, but honestly, because I have had to have mammograms, us and MRI's feels like every 3 months to follow up on new suspicious images....well I am starting to lean towards the mastectomies.
I have read that a mastectomy could be a drastic route. I had my gyn and internist say if it were them they would have the mastectomy and not take a chance.
I am 42 years old, married and have two children. My husband is supportive in any decision I make.
I do not want to do anything drastic or make a decision out of fear, so this leaves me very conflicted on how to make a good choice, because I am afraid.
I know this decision is mine and mine alone, but given the information I have listed what would or did you do?
Is a mastectomy too drastic or is surveillance a good option for now?
Thank you!
Comments
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I've decided it is too drastic right now for me. I've had a few clear mammos & MRIs since my biopsy. Also, the individual risk assesment isn't very accurate-they work better on large populations. My genetics counselor thinks maybe 25-30%. A woman with no risk factors has 12% risk. One of the online calculators puts me at about 80%. I choose to believe the counselor
I can't take Tamoxifen because I had a prior pulmonary embolism. I have been offered Aromasin now and am still thinking about it.
If I start having to have frequent biopsies I may rethink this. Mastectomy problems can be lifelong. It is not always just an easy surgery. I know I couldn't do reconstruction.
Others will be along to post their views. This group does seem to be heavily represented by women who have chosen PBMX. -
My risk factor was given to me by my breast surgeon and my confirmed by an oncologist & genetics counselor.
It is so hard to make a choice. My anxiety increases each time I go. Thank you so much for your post, it helps me not feel so alone and I greatly appreciate your opinion.
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This is a very tough decision. I also had dense breasts and I was going through the same thing the past few years. My mother and sister have both been dx with breast cancer. I always felt it was a matter of time. I had a biopsy in 2008 that came back benign. I decided to use the wait and see approach. Went for mammo every 6 months for a while. Then told to come once a year. This year for some reason, I went 3 months early. Guess what, triple negative breast cancer, IDC. The surgeon started talking about lumpectomy. I said, "no way". I had bilateral mastectomy on June 4 of this year. Also having chemo (last treatment tomorrow). Don't regret my decision at all. Of course now I wish I had made the decision sooner!
The cancer was in the same place they did the biopsy in 2008. That's kind of scary. Is it something they should have caught sooner? One problem I had, with only 2 close relatives, I'm not sure my insurance would have paid for the surgery before I was diagnosed. I had the genetic testing after diagnosis and it came back negative.
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I do understand. My initial feeling was just get them off! I calmed down and rethought. I was diagnosed within just a few months of having had a very major other cancer surgery. I just couldn't believe it. It never occurred to me that I would ever hear anything from the mammogram place than "see you next year".
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It's a challenging situation. Like you my family history was poor. My mom died of it age 59 and her two aunts both diagnosed, one died, one had mx and lived til 83. I had numerous other risk factors besides the high grade LCIS. Tested BRCA negative. I did bilateral mx and am super glad I did. I had too much anxiety and too many "early warnings" to ignore. In my case the surgery was uneventful, not painful, fast recovery with no further complications. Best was that there was nothing more sinister found on pathology. I feel I made the best choice for me. My husband doesn't seem bothered one way or the other. Good luck as you decide how to take control.
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Roxy, the good news is that you have time to reflect, as with LCIS there's no immediate need for action. I did the pbmx and never looked back, as like many others with extensive family history of BC, I had been waiting my turn since my teen years. I took LCIS to be an early warning signal and jumped at the chance to plummet my risk with the bmx. I am BRCA negative but absent any better explanation, I feel that there's a genetic 'something' going on and I'm glad I was able to skip the family disease. I worry about my daughter, who is 32, and just wish there was a better path to prevention than anything available today. Good luck with your decision.
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Sorry for jumping in here Roxy but I am going thru the same decision. Was dxed in May with LCIS and ALH. Did research and lurking on BCO threads, trying to decide which direction to go. I had made a firm decision on BMX-today had first appt at cancer center with new surgeon. She walked in and first two sentences: I believe in conserving all breast tissue AND do not do preventive mastectomies. Shot my legs right out from under me! She did not listen to any of our concerns of our future, only that we should meet with oncologist and only do the Chemo. As she put it "it is only a pill" not IV chemo. When mentioned all meds have side effects = lots of my pts take them. Needless to say it has been a really long day, trying to figure out where to go from here. Char
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You are not alone in having a hard time choosing which treatment option to take.
Carol57 is 1000% correct, and, if you were 'only' diagnosed with LCIS (in other words, you are not at risk for immediately having anything worse presently), then you do have as much time as you need to make your decision : there is no rush.
I only want to share the information I was given, to give you some idea of the different recommendations different people have gotten (including all those listed above.)
My paternal grandmother had breast cancer at >50 years old (thus probably postmenopausal) in the early 1950s. She had bilateral mastectomies; I am guessing that this was standard treatment at the time; this was before chemotherapy, and I am guessing that radiation treatment was at least uncommon. Since she had only sons, I was referred for genetic counseling. I have also had 3 maternal aunts postmenopausally and 2 maternal cousins (at least 1 premenopausally) who had breast cancer. I have classic LCIS,and was given a variety of risk numbers, including 30-40% (my my oncologist), 'somewhere between 10 and 60% lifetime risk, but probably closer to 10% than 60%' my a NCI-certified center. My genetics counselor said I had about a 40% lifetime risk, and my risk for a deleterious BRCA mutation was ~2-4%, about the risk of an average Ashkenazi Jewish woman.
I have had a similar experience as Char66: the breast surgeon (who did my breast excision) said she didn't want to do any further surgery on me: her initial words to me as she walked into the room for the first time was "If you want me to do bilateral mastectomies, then I'm going to fall down in my chair." My 2nd opinion at a NCI-certified center said 'I do not recommend bilateral mastectomies for you, but I will not bar your way to the surgical doors'. If I had mastectomies at this point, I would have to have a substantial out-of-pocket expense as it would have to be out-of-my-network. If I didn't have a surgeon who was willing to do surgery, I know an oncologist was not going to perform mastectomies.
Please do know that these 'lifetime risk estimates' for breast cancer are extremely inaccurate for individuals. Even for the classic Gail model (LCIS women are excluded from the Gail model), the accuracy of prediction is 'better than the toss of a coin, but not by much.' jnci.oxfordjournals.org/content/98/23/1673.full.pdf Note that if they are this horrible at predicting if an average woman gets breast cancer, just imagine how terrible they are at predicting an individual's risk of breast cancer when they have LCIS.
This paper does not list all the risk factors of the LCIS women involved, but its the largest, longest study I know of that looks at the long-term risk of breast cancer for LCIS women. http://university.asco.org/sites/university.asco.org/files/ClassicReferences_Breast_EpidemiologyBiology_1..pdf
Emotionally, everyone is different. One person may be more afraid of one outcome than another. That's one of many reasons why there is no one right choice for everyone.
You are not alone, whatever you decide. I don't know of any breast specialists who recommend anything less than annual screening for LCIS women. Some breast specialists recommend screening + antihormonals, or BPMs. But whether you choose BPMs, antihormonals, annual screening, or even no further screening at all, we all need support for our choice. (One acquaintence who is older than I is choosing no mammograms due to the fear of radiation. She does not have a diagnosis of LCIS, but all of this is a risk - vs - benefit decision.) I am not actually encouraging anyone with LCIS to not get screened again, but I can certainly accept it could be the right choice for some. There is no dose of radiation that give a zero increase in one's chance of cancer.
Everyone needs to make the health decisions that are best for them.
I am thrilled there are so many women here who are willing to learn about their risks before they make their treatment decision, whatever that might be. That is my only hope: that people check thoroughly with both their heart and their head before they make a decision.
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Thank you so very much for all of your posts. Each one means so much to me. Each experience has helped me. It is so hard to make such a big decision that ultimately changes your life.
I have only been on this journey since November of 2011 and I still can't figure it out. Like Melissa, my first response was "get them off", then I settled down and was prepared to continue on the surveillance route.
I was okay, but I have had to have an exam, mammogram, MRI or US every 3-6 months because of new conditions that are most likely benign but need closer evaluations. Each new lump, dimple or change has made me more anxious.
I watched my grandmother die when I was very young and I am the same age she was when she was first diagnosed with cancer. Although, I know LCIS is not cancer, I still have a lot of similar changes going on like she did and I think that causes me to be more fearful.
I look at my boys and want to be there for them. I know there is no way to know if I will actually get cancer, but my last visit when they told me I was to have another US due to the dimple on my breast, it flipped a switch in me and I went from surveillance to I want a bilateral mastectomy!
I think I am going to talk to the breast surgeon & the plastic surgeon to get additional information on having a mastectomy, then take some time to digest the information and make a decision.
I still have a lot of questions.....
What is the percentage of people with LCIS that turns into cancer?
What is the average time a person who was diagnosed with LCIS, gets cancer?
If they choose a bilateral mastectomy, what was the recovery time, complications and how does it change your life? Can you still do the things you did before or does the surgery cause you to have limitations?
Again, thank you Melissa, jarris77, beacon800, carol57, Char66 and leaf for all of your kind words & inspiration!!
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I believe it is estimated that about 20% of women with LCIS will get breast cancer while about 12.5% of women with no risk factors will.
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Thank you Melissa.
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The increased risk of breast cancer in LCIS patients does not go down as we get older. The cumulative risk of IBC <invasive breast cancer> continued to increase 15 to 25 years after diagnosis. They cite other papers that get between a 12-29% incidence rate of breast cancer 16 years after LCIS diagnosis. These estimates are based on VERY small numbers of patients, so we do NOT know these rates well at all.
However, this is also true of the general population. For the general population of women:
- Age 30 . . . . . . 0.44 percent (or 1 in 227)
- Age 40 . . . . . . 1.47 percent (or 1 in 68)
- Age 50 . . . . . . 2.38 percent (or 1 in 42)
- Age 60 . . . . . . 3.56 percent (or 1 in 28)
- Age 70 . . . . . . 3.82 percent (or 1 in 26)
These probabilities are averages for the whole population.http://www.cancer.gov/cancertopics/factsheet/detection/probability-breast-cancer
For women with non-metastatic invasive breast cancer, their risk of getting metastatic cancer is of course higher, often much higher, than that of LCIS women. (I'm calling LCIS women as women who have LCIS and nothing worse like DCIS or invasive breast cancer.) The risk of a non-metastatic invasive breast cancer recurrance does go down with age, but does not return to zero. But, as I said before, their risk starts out much higher than LCIS women, and goes down with time. Depending on the aggressiveness of their cancer, the rate goes down more rapidly or slowly than LCIS women.
There was one woman who had invasive breast cancer, had a Halstead mastectomy, and got a relapse 52 years later. The article claims this is a record. http://www.ncbi.nlm.nih.gov/pubmed/22606439. 50 years ago, the standard treatment was a Halstead mastectomy.(?I think a mastectomy was usually the only treatment in the 1960s- I don't think that chemo or radiation was an option, or at least a common option. Perhaps some women had their ovaries removed (decreased estrogen levels in the body.) )
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Wow, I was hoping to read something about somebody like me,, Hi Roxy, I was diagnosed with LCIS (Pathalogy said biospy proven malignancy) but two doctors said that was a bit aggresive they thought. Anyway, this was last december and have had two additional biospys since on the same breast.. Had the bi lateral MRI's in April which showed some more LCIS.. This was my 5th biospy in 4 years, two on left, Am so tired of the waiting and wondering especially since my next mamo is just around the corner,, I met with my breast surgeon and told her I did not want to take tamoxifin and this close monitoring I don't think is for me,, went to see a plastic surgeon yesterday as I now am highly considering Bilateral masectomy...with immediate reconstruction.. Some people say it is so aggressive, why don't you just wait, and see if you get it then do it then!!! Well, for me the waiting and wondering may be worse than just getting them off and be done with it. I am a worrier and have high anxiety so this is one reason I may choose the masectomy.. For me going through the biospys is very stressful and I am sure there will be more in my future. Not sure what I am going to do, I feel like if I do nothing I am wrong and if I have the masectomy I may be wrong. I just don't want to act out of fear but hell I am fearful! I have very dense breasts as well,, Anyway, just want you to know, I get you!
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Thank you Shelton for the post. We share a lot of the same worries... I feel the same, I want to be done with this roller coaster ride, but then I don't want to do anything that might be considered drastic or out of fear. So I am stuck with not knowing what to do.
I am so glad I found this site, everyone is so supportive, helpful and does not judge you for your feelings, which helps you work through your fears.
I just had another breast US yesterday and I have to return in January for another mammo and an MRI in March. I have been so stressed lately, I worry with each visit.... will this be the day they tell me I have cancer??
I tell myself to be strong and it will be okay and remind myself that the breast surgeon said she was confident she could catch anything early and I will be okay.... Then I remember the gyn, my internist and others that ask me "Why would you want to wait till something happens".
The answer to that is, I guess I really do not want to wait till something happens, I guess I was hoping for the breast surgeon to give me the same advise the gyn did.
My mother asked me how I would feel if I got cancer and did not do everything possible to decrease my risk. Basically saying I would feel as if it was my fault that I got cancer because I did not do anything to try to prevent it. I was also asked to think about how I would feel if I had the mastectomies and found out my breast were healthy...would I regret having the surgery?
I thought about it for a while and for me, I think I would feel worse if I got cancer and did not try to prevent it and if I chose a mastectomy and my breast were healthy...I think I would feel relief that I did not have invasive cancer and I greatly reduced my risk.
I think I would also have a healthier life because my anxiety and stress would be gone and I could get beck to living my life.
After saying that you would think I already made my choice...but no, I still research, and go back and forth. :O(
I cant figure out why I cannot make a choice..it sounds right when I say it, but my heart wont commit to either decision.
I appreciate so much all of the posts for and against mastectomies. It really does help to hear all of the stories from all the brave people who have made such a hard decision. I can only hope that I can be as brave as they are and be able to make a good decision for myself and feel confident that I made the right choice for me.
I have an appointment on 9/30/13 with the breast surgeon to go over my new changes in my breast and I am going to get more information on having a bilateral mastectomy and I need to find a good plastic surgeon as well to get more information.
I feel like if I get some information on what the process is and how having a bilateral mastectomy will change my life, I will be able to make a good choice...at least I hope it will.
Good luck in your decision, whatever you decide, I support you and which you the best!!
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Leaf, thank you for the information. I am going to the links you posted as well. I can't thank all of you enough!!!
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Roxy70, I totally understand. I have been on the decision making roller coaster for a little over a year. Initially I thought "take them off", then I took a step back. Been taking tamoxifen for about 9 mos., and have had a consult with PS but haven't scheduled surgery. It is very difficult to have this decision solely resting on your shoulders. I lost my mother to bc, as well as a first cousin, and so far have had one biopsy that showed lcis. I too feel like I want to do everything in my power to prevent, but make a good, sound decision.....My bs says it's my decision...that she has some patients who have the surgery with just the lcis dx and no family history, and other patients wtih the family history and no lcis who also have the surgery...Just a personal decision...It is truly the most gut wrenching difficult decision I've ever been faced with. The support of this website is very helpful! Good luck to you on your journey...
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I have pretty much made the decision for the masectomy. I read something on this site somewhere, Someone said, I don't want cancer to make the decision for me, I want to make the decision for myself.. I have a very good surgeon and she feels for me it is the right thing as I was in her office crying just talking about going for the next mamogram and just scared of that!! My biggest decision now is wether to have the immediate implants or do the tissue expander thing.. My plastic surgeon feels like they would look a bit more natural going the expander route but I don't think I will tolerate that well, so going to go back and see him again and talk about the immediate implant. With LCIS as you know, one may not ever get breast cancer or maybe one will, and if I did then I would be dealing with radiation and maybe chemo!! again just maybe,, One of my good friends had ductal in one breast, choose a lumpectomy, had radiation, then 4 years later she got it in the other breast.. so then off they went, I said to her at the time, "isn't that a bit drastic?" Now I get it.. But still like the woman who also posted, a very gut wrenching decision..
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Hi Roxy
Not sure if this will help and this is only my opinion...
As far as I know I haven't got the BRAC gene, (though my sister had BC too), however I have had two recurrences so have an extremely high risk of further recurrences and metasteses: A couple of years ago I had cosmetic surgery to reduce the size of my good boob to match my reconstruction side. All the tissue removed was riddled with LCIS, but it never even occurred to me or my onco breast surgeon to have this other breast removed. Once you have an LCIS diagnosis the very positive thing is that you will be closely monitored.
I think you should think carefully about the impact of living without your breasts and the physical invasion of possible massive surgery if you opt for bilateral reconstruction. If, in the future you were unlucky enough to get BC, they would catch the cancer early, (because they are monitoring you) and at that point surgery will be a no brainer!
I know only too well how anxious a DX can be, but give yourself time to get used to this situation. It is part of my life now and I have learnt to live with it.
I hope this helps...
N x
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My heart goes out to each one of you ladies. I'm not sure it will help, but here's my story - I had my first MX in Dec. 2012 due to IDC and a second MX in May of this year. Something suspicious was noticed in my remaining breast when I consulted with a plastic surgeon in February. It was suggested that I have my breast biopsied which was scheduled for a week later. After thinking about for a few days, I decided to cancel the biopsy and have my breast removed. I had gotten along fine physically and emotionally with my first surgery, and I simply did not want to go through any more testing. Plus I was approaching 60 and was ready to get it all behind me. So for me, my decision ended up being a rather easy one to make. I pray each of you can find peace in whatever you choose to do. God bless.
Ann -
I am going to see the breast surgeon tomorrow regarding the change in size of my breast lump and the new change in my nipple. I am also going to ask about getting a bilateral mastectomy.
I have not made a decision to have a mastectomy as of yet, but I am definitely ready to have a conversation about it and see where this takes me.
I have been so stressed about this appointment and also about my job. They want to let a minimum of 2 people go. That being said, I am not sure I will even be able to have the surgery if I choose too.
A big part of me is ready to have the surgery, but there is still a part of me that is not ready. I wish I could be as confident in my decision as others, but I have never been able to make decisions with no clear information.
Some say it is a drastic choice, some say do not make a decision based out of fear, if I get breast cancer I would feel guilty because I did not get a mastectomy and do everything I could to lessen the chance of getting breast cancer. I was also told by the breast surgeon that they could catch it early and my gyn asked me why I would untill something happens.. do I want to gamble with my life?
I go over everything in my head over and over again.
I drive myself crazy thinking about it. I have always wanted to do what is right, but there is no wrong decision... so which is the most right for me?
I wish I could figure this out. I wish someone could just say "this is what you must do".
I guess until I am 100% ready to get a mastectomy.....well, I guess I should keep thinking about it.
I just wish this was all over and everything was okay and I could move forward.
Best wishes to you all!!
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I've always found 2nd opinions helpful, whether or not I like/agree with what they recommend. Sometimes they trigger me to learn more about an aspect I had not thought about. Sometimes its as simple as discovering how they diagnose or approach a disease or situation. One piece of advice someone wiser than me said was if you are confused/don't agree with their evaluation, to ask them if they could talk about their thought processes about your situation. Then you may be able to understand more how they came to their conclusion. Some of my doctors have been really great, and some have been dreadfull, but I can usually learn something from all of them.
Best wishes on your appointment tomorrow. Let us know how it goes, OK?
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Hi ladies. I just wanted to add my thoughts. I hope it helps. I had ilc and had to have a mastectomy cause it was too big for bx. I immediately chose bmx with expanders because I didnt want to worry about the other breast. I was under the impression that a mastectomy means no more chance of cancer. I now know that isnt true. You can still get a reccurance its just less likely. But if you are a worrier you will feel knots and lumps and thickening that will drive you crazy. Because my cancer hid so well I dont trusts any tests. I had to find a peace ( zoloft) and comfort (xanax) to accept what had happened and know that the stress contributes to cancer and the stress was gonna kill me. I have now resigned the fact that I may or may not die of breast cancer but I am sure going to enjoy my life.
Point number 2 is that for me the surgery was horrible and I hated the 10 months that I had those expanders in. My breast do not look normal and probably never will but hey I dont have to wear. Bra. Lol You value the positive things that you can find. I almost lost my right breast for a second time dues to cellulitis. But I didnt. I dont regret my decision to have the surgeries I just wish I would have been better informed. I know that I have done everything possible to fight this beast. And if I find out tomorrow that I have mets than I have already accepted that and will fight it too. But know that the fear doesnt dissipate because you have surgery and know that this surgery can cause other issues or it may not. Like I said it saved my life. Healing huvs to all of you and I pray that you find your inner peace. -
Roxy, I will be thinking about you tomorrow. I wish I could wave a magic wand and give you peace. Hugs to you.
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I had BMX 5 weeks ago with immediate reconstruction with saline implants. (DCIS in right, LCIS in left.) No regrets! I did not want to worry if a lumpectomy had gotten it all or wonder when or if it had turned invasive. Doc said 99% of breast tissue is taken in mastectomy and the chance of a reoccurance is only 1-2%. Pretty good odds. Also I do not have to have radiation or chemo because they caught it early before it had spread even to sentinel node. Surgery went fine. Pain not bad - manageable with Tylenol. Implant looks great - healed fine, no problems. Feels natural. No discomfort. Other side skin was too thin so implant removed after 2 wks and replaced with tissue expander. Got my first fill last week...180cc's no problem. Completely painless. Another fill tomorrow and every Thursday until we get up to 800 cc's. (About 2 months.) Then he'll do a quick 45 minute surgery and exchange the TE for an 800 cc implant like I started with. Tissue expander does not hurt or feel uncomfortable. Little side is taking shape already. I am so happy I made the decision to do the BMX. Radical? No Way! Can't imagine going through mammo's, biopsies, and MRI's every 6 months and worrying in between. With the BMX, it's over, no more sleepless nights or "what if" nightmares.
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I opted for bilateral mastectomy with a diagnoses of LCIS in 2008. I wanted both done for symmetry and it wasn't as bad as I expected. My reasons were because the Dr said it was shown in each quadrant and a lumpectomy would not get all of that tissue. It turns out the pathology came back with micro invasion. I wonder how much it would have grown if I did the watch and wait scenario. It's not an easy decision, I knew the constant scans and tests would cause more anxiety! Ask many questions and go with your best instinct. Know that we're pulling for you!!
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I have chosen the Bi-Lateral masectomy, Scheduled for Oct 28, with one step implants, this has been a gut wrenching decision but I believe it is right choice for me as my belief is why would one not be aggresive.. I don't want to get cancer then maybe have to go thru radiation or chemo. So this choice may not be right for many of the women with LCIS but know I cannot live with the wait and see approach, I want to make this decision for myself and not let cancer decide it....
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Nice to heare that you are doing well, good for you!!
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Shelton, I will keep you in my prayers. I hope this journey brings you peace and you are able to move forward in a new positve way. Please keep me updated on your progress.
I am so happy that you were able to make a decision and are confident in your choice. I hope someday soon I will be able to be confident in a decision was well. As for now, I am still on the roller coaster ride.
As for me, I went to see the breast surgeon and she said that my insurance will cover the surgery if I choose to have it. She told me to make an appointment to see a plastic surgeon to go over all my choices and then think about it and when I am 100 percent sure I want to have the surgery, to see her again to go over how we will proceed.
The breast surgeon also told me to think about how I feel if the reconstruction does not turn out well and to think about how I would feel if one of my breasts turned out to be deformed. I have to say that scared me a little too. I am glad she said that beacuse that is a possibility and I need to think about that as well.
The breast surgeon assured me again that if I were to get invasive breast cancer, she would be able to catch it early. She then had me set up an appointment to see a plastic surgeon. When she told the scheduler to set up the appointment and gave her the reason for the appointment, They smiled at eachother and I felt like there was an unspoken laughter between the two of them like I was making a drastic decision and I should continue the surveillance route. I am sure it is all in my head and my own insecurities are getting in the way.
I told my mother about my visit and she again told me ...yes, the surgeon might be able to catch it early, but what if she doesn't and what if it is missed like my grandmothers cancer who died at 52. I would also have to have chemo...is that what I want? Why do I want to risk my life on the chance they might catch it early.
I sometimes feel like a yoyo between the two of them. They both make good sense, but knowing in my heart my mother makes the most sense to me. Why can't I commit???
Sometimes I think I am afraid my husband will want to leave me if I have the surgery. He said it is my choice and he supports any decision I make and he thinks I should do the surgery so I do not have this stress anymore.
Although he says these positive things to me, somewhere in my heart I feel like he might not be able to handle it or ever look at me again and would leave.
When he felt the lump in my breast he was creeped out. If he cannot handle that, how will he handle no breasts or reconstruction? This is the first time I have ever said this to anyone or have admitted to myself that is another reason that keeps me from having the surgery.
I sometimes feel like if the breast sugeon said to do it, it would be different and I would. My GYN and Internist said they would have the surgery if it was them, but I seem to be giving more weight to the breast surgeon.
Well, I have a lot to sort out.
Thank you for listening to me and thank you melmcbee, AnnBR, sandra4611 and grammyJo for sharing your experiences with me and to all of the wonderful people here who have given so much of themselves to share their stories and I greatly appreciate each one of you for it.
Many blessings to you all!!
Roxy70 -
Roxy70
I sent you a PM -
All of these posts have helped me a lot. I have not met anyone dealing with these same issues so it is comforting to find similar women.
After routine mammogram/ultrasound I got the dreaded call back. This was in 2008.
Had the stereotactic biopsy and they found LCIS and ALH.
Followed that with the excisional biopsy with wire localization and also found ADH.
So since 2008 I have had LCIS ADH ALH and dense breasts.
One Aunt who died from breast cancer.
Tested negative for BRCA.
Went on a yearly mammogram/ultrasound surveillance.
In 2011 I guess new data came out about LCIS so we added yearly mri's to the mix.
I was fine with the yearly screening but the anxiety was really getting the best of me with the every six month screening.
Got a few call backs during those years but it wasn't until this past August that the MRI picked up something and I had to have a MRI guided biopsy . My first thought was "why didn't i do something sooner". Thankfully it came back as a fibroadenoma.
So for me something shifted in August and I took it as a sign to do something different Tamoxifen was not really an option for me due to family history.
I am scheduled to have a prophylactic mastectomy with DIEP flap October 23rd. When we are diagnosed with this LCIS they basically give us three options. All the options are right. The hard part is finding the option that's right for you at the time.
Looking forward to sharing our stories.
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