DCIS
Hello ladies: Anyone here with DCIS who wants/has had a double mastectomy? Some people think I'm crazy for wanting this double mas. (husband included) but I am a big worrier and I just want it all over and done with. I know there's still a chance of recurrance even with both boobs gone, but it's still what I feel I need to do, for my peace of mind. My mother died of ovarian cancer at 52 and I have worried about that for years. In Dec, 2008, I had an oopherectomy. The ovaries were clean, then 2 weeks later, I was told I had breast cancer. Ironic?? Anyhow, I am high risk, with 2 maternal aunts, 3 first cousins and 1 second cousin with breast cancer. Waiting for the blood results to come back for the BRCA1 or 2 mutant gene. Regardless of the results of this test, I still am opting for a double. Too drastic?
Comments
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Mikita, I'm having a Bi-lateral mx Tues day, and I have DCIS, I do have LCIS and some other things going on, but the most important is the DCIS, which is multifocal. MY left breast is the one with the DCIS but I am having the other done too cause I don't want to have to worry so much about getting it in the right. I will say a prayer for you, to help you and your hubby decide what is the best decision for you. Always remember every case is an individual choice and only you can make it. My best wishes and prayers to you. Bee
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I had a double mast and am thrilled! I had no recon and hope I am setting an example by not wearing foobies either. I work in sales and have been back to work for almost a month now, in the public eye and holding myself proudly. Why should I wear fake boobs to make others feel better?
I look slimmer and my neck and back feel better without the load. If you have only one breast off, depending on your size, you may feel unbalanced. This way I don't have to worry about wearing a bra ever again. Ever.I also don't have to worry about getting cancer in the other breast! My chest looks clean and simple now. I think I, personally, would find it unusual to see one of my 42D's with a flat part on the other side...
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I too had a bi-lateral with immediate reconstruction. and truly after many many months, after my world falling apart and slowing coming back together, after all the good research and good advice, after all the insomnia and anger after months of healing from the reconstruction and finally having something that truly looks like a breast.. I still have not found my happiness. I believe that because of fear I choose to "live" - fear from watching my father die from the things that are suppose to help this wonderful man who I loved with all my heart.. not many of us here loose our fathers to breast cancer but I did and after all of that I am sorry now that I allowed fear to overcome me and "look" like an answer, that I didn't wait to have the bi-lateral, I wonder if I will ever be myself again.. The tissue is gone but along with it went something very precious that I cannot identify for you or for myeslf and I wish I had waited.. if I had waited and continued to have other problems with my breasts I might have then decided and felt better about having a bi-lateral, but I should have waited. Fear can make us do things that we wouldn't even consider when we are acting out of knowledge, and understand and strength.. But we are all different and this is for me, my opinion alone. It was never "thrilling" for me to be told I had cancer to be told that the doc's were confussed as to how to handle it (because it was from my father rather than a female member of the family). I wasn't thrilled with the reconstruction process as well as the outcome. Thrilled would have only come to mind if my MRI and biopsy had been negative and I could have gone forward - then I would have been thrilled!!! In retrospect I acted ,yes because I was encouraged by doc's who themselves really didn't know, by family who loved me and wanted the best for me, I acted out of the selfishness of wanting life for as long as is absolutely possible (if that is a selfish act at all) and I acted out of too much fear and hast and allowed people who knew less than I did about this horrible disease to decide which way to go. Again this is just my opinion and I am aware that it is blunt - my intent is not to hurt but to help someone who might hold on to that piece of them that is precisious for as long as possible, and perhaps never have to give it up at all. Best and I feel you fear and anxiety - I hope all goes well for you, knowing all the while this is not an easy or thrilling decision!
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Its not too drastic if that is what you want.
The best treatment for you...
Is what you will feel most comfortable living with. No one can decide for you.
None of us that choose bilateral Mastectomies (or even single mastectomies) want to have reconstruction...Or live with no Breasts. We want real boobs that are cancer free.
But since we were diagnosed with Cancer. We all need to make the decision that is right for us...even if the choices arent the best. (such as reconstructon or No Breasts)
There are many, Many women who choose Bilateral for DCIS.
Pam
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I was diagnosed with DCIS October 3, 2008. Here's how I came to the decision to have abilateral mastectomy. My options were lumpectomy with rads or mastectomy with no rads. My surgeon said that the mass was rather large and it would be crap shoot trying to get clear margins. I did not have a "lump" and from the MRI it looked like it was all over my left breast. I did not want to have to go through radiation therapy. About 10 years ago I had calcifications in my right breast that was needle aspirated and deemed begnign.
I knew I would have to have some kind of surgical procedure on the 'good' breast if I kept it so that it would look like the reconstructed breast. I figured if I had to have surgery on the right anyway and I had those calcifications years ago, why not have a double mastectomy and put this stuff behind me. Its a good thing. The pathologist found very early DCIS on the other side too!
Your double mastectomy may go off just fine. I wasn't out of the recovery room before they had to wheel me back in for a second surgery because I developed a bleed (broken blood vessel). That really screwed up the way my breasts (or lack thereof) looked. Then my right tissue expander popped out from behind the muscle. That didn't matter because exactly one month after the first and second surgeries I had to go in for a third surgery to have the tissue expanders removed due to infection.
My PS said wait 4 or 5 months and heal before I think of reconstruction. I am still going to have reconstruction. I want breasts. This time, however, I am going to make sure I am fit and healthy before I go under the knife again.
Whatever you decide is the right choice for you. Best wishes.
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Maybe I sounded too flip when I said I am thrilled. What i meant was, I am not mooning around missing my cancer.
My ego, heart and soul have accepted what I have done and I know I have done the best thing to get rid of the cancer.
As I've said before, you will know you have made the right choice when you feel at peace.
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Maybe "you will know when you feel at peace" but when exactly does that happen? When you are making the decision, I certainly did have all the right answer for myself. When you are reconstructing our bodies or when we are through.. I'm just saying some of us didn't know what we left behind and it is not quantifiable. I am glad, barbe1958 your ego, heart and soul accept your choice but that unfortunately just isn't the case for a great deal of women.. And I want Makita to know we have (as a society) been "trained" to give up the tissue - and it's not just the tissue you give up - again my opinion entirely.
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mikita-
Think long and hard about a bilateral because once the surgery is done they are gone for good. I thought I had made peace with my decision but I don't seem to be able to move on emotionally.
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Mikita,
I had a single mastectomy Thanksgiving week following a diagnosis of extensive DCIS in one breast. Although the other breast appears to be clear, I am strongly considering having the remaining breast removed. I'm worried that cancer will develop in the remaining breast and will not be detected early enough to be successfully treated. My cancer was barely visible on mammogram -- the MRI revealed much larger involvement. So I would be very worried if I weren't receiving annual MRIs from now on, and I fear that my insurance company will not pay for them (or will pay for a few now but will stop later). We simply cannot afford annual MRI's. I think it's likely that, within the next few months, I'll decide to have another mastectomy, with reconstruction on both sides. I wish I had had a bilateral MX back in November. Good luck to you.
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I was diagnosed with DCIS on the right and LCIS on the left over the last 2 years. I finally made a decision last week to get a bilateral mastectomy. I see the plastic surgeon in a couple of weeks. I'm confused -- are DCIS & LCIS cancer or not? After the last lumpectomy (May 2008) the doctor said she did not get clear margins with the LCIS but thought the area affected was large & didn't recommend another surgery. She told me to consider a mastecomy, but didn't feel I needed to rush in to have it done. Now I'm wondering if I shouldn't have just gotten it done last year.
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This seems to be the age-old question. Bi or Uni? As you can all read, there are as many opinions as there are answers.
Dierdre - please don't disqualify my experience just because yours wasn't as successful. Perhaps YOU didn't make the right choice....
Baywatcher, I also feel very sad for you...
I enjoy watching personal make-over shows on TV and am still stunned to see women cry when they get their hair cut. If only they realize what they could be losing. But, having said that, I am not defined by my breasts.
I have read tens of dozens of posts just on this website of women who get one breast off and within a couple of years have to do it all over again. I hear their frustration and anger as in dsb above. They found atypical hyperplasia and microcalcifications in my other breast that is not picked up my MRI. Thank God, I made the RIGHT decision.
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DCIS and LCIS are both technically stage 0 non-invasive bc, but many in the medical community feel that LCIS is a marker for higher risk and not a "true" cancer. They both are "in situ" bc, meaning that the cancer cells are contained within the ducts or lobules and haven't broken thru to the surrounding breast tissue. The potential for invasiveness is greater for DCIS, therefore the recommendation is often lumpectomy and radiation or mastectomy. Since you have both, the DCIS "trumps" the LCIS and your treatment will be focused on the DCIS. Having LCIS doesn't preclude you from having a lumpectomy for the DCIS, but if you are planning on a BPM anyway, that will reduce your risk very significantly.
Anne
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You explained that better than I have ever heard it Anne! Thanks.
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Barbe1958: Your experience is yours and yours alone, mine is mine and mine alone! In psychology your comment could be classified as projection and actually it is you disqualifying MY experience.. Either way our decisions have already been made!
Mikita: do as much homework as you can, you have time.. talk to as many doc's and maybe a counselor anyone who can help you make this impossible decision a bit easier and I hope that you do find peace with your decision, Then when you think you have studied this until you can't anymore make a decision, but please understand that if you're decision doesn't come peacefully, many of us made the decision from that place. Perhaps barbe1958 is right and I didn't make the right decision but afterwards there is no going back so please do this as carefully as ANYTHING you have ever done in your life - when you do (whatever you do) I wish for you the best outcome and happiness (and a cancer free future) possible. Good luck my best thoughts are with you!
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Barbe1958 there is NO connection between women crying about their hair and women crying about the mastectomy's they may have to have.. ugh I am not defined by my breasts either and never have been -- this is a loss - a true loss that many women feel - that you don't seem to be able to understand. You don't have to understand it but please don't suggest that women who have made the decision should get over it as if it were a hair cut.. I am truly offended by your statements here! If you are happy with your decision that's great but "thrilled" that's is flip! As is you statement about hair equating to breasts!!!
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I had a terrible reconstruction...And I will have to wait almost a year to have it fixed (from initial exchange)
But I am still happy that I made my Choice to have a Bilateral. I do not regret it for a minute. This is how I can live with the least worry for me.
Yes, I do miss my breasts. And I always will. Hopefully I will miss them less when I have a decent looking chest that I can wear normal clothes in. Something that I wont be embarrassed for my dh to see ( I was not embarrassed for him to see my Expanders)
And my Life is not the same as it was before cancer... I do feel something is missing....But its not just my breasts that are missing...It is Life before cancer. My Life wouldnt be the same as before cancer even if I had only had a Lumpectomy.
Some women feel they will get the old them back.
I am one who feels I will never be the same again.
Im a New & different Pam
I do think there will always be women who regret having a Mastectomy. There will also be women who regret having a Lumpectomy. No one wants to make the wrong choice & it is very hard to decide. its such a scary & Stressful time. I had no support from my Drs. That made it even harder for me to do what I wanted- because they would not listen to me.
Making a list of Reasons why or why not to have a Bilateral may help you decide.
Pam
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Diedre, Barbe, everyone: Thanks for all of your inputs. I know this is an extremely difficult decision. I have read, researched, bought books, sought the internet, called others women in my location that have been thru this and thought, thought, thought. After watching my mother die, I've always been afraid of dying the same way she did. She died in 1980 and I know things have changed drastically, from chemo, radiation, and meds. I know DCIS comes back as invasive cancer. It could be next year or ten yrs from now, but I feel it WILL come back. I think once there is just one cancer cell in your body, it will eventually spread. I guess I want that possible one little cell gone and, to me, having it all removed is MY answer. Yes, I will grieve loosing my breasts. You know the main reason why? I am 56. I married the second time 14 yrs ago. My husband was a "boob man" and I was a size 32A. I am now a 36D. I don't know exactly when these things grew, probably in my late 40's, early 50's, so, you see, I haven't had my breasts for a very long time. I'm not ready to give them up, but I'm also not ready to give up my life. I have 8 grandkids I'd like to be older than they are, so they'll remember me when I AM gone. I believe when it comes to living, we'll do anything to have a little more time. I have an 2 aunts that are gone now and they had bc. I presently have 2 first cousins that had bc about 18 yrs ago and they're still here, and both now have other cancers. One had a single mastc. and it came back in her chest cavity, plus many other places. But one other is doing great. So, we have no way of ever knowing if ours will come back. Statistics are statistics and may not apply to us. But do we gamble with our lives because we can't face loosing our breasts? Some will, some won't. I know if I have both removed, I'll really grieve if the healthy one comes back ok and will wish I had waited. But if I wait, will it come back as invasive when I waited too long? It's all sooo not fair, but I have this and I have to decide what to do with it. I pray every day to God to give me guidance. I have an appt. at Johns Hopkis on Friday for a second opinion. I don't doubt it was cancer, but I just need someone else to tell me that it was. I don't know why, but I do. THANKS everyone for sharing your feelings. I hope after Friday, my mind will be made up for sure, but perhaps, even then, I'll still be unsure.
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No woman is going to be at peace giving up her breasts. But, in my case, I knew I could not live waiting for the other shoe to drop. I would obsess over it wondering when cancer may show up in the other breast. For me, that was 'peace of mind.' I don't think any of us are happy to have her breasts cut off. Had there been another choice I would have made it. There simply wasn't.
With all the complications I had anyway I can only imagine my situation had I taken the less intrusive option (lumpectomy).
If you are the kind of person who takes one day at a time and won't worry about what might be, then make your decision based on that. Besides, I like to be in control and this was as much control as I could exert, given the circumstances.
I think peace of mind is what you can live with.
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kmccraw: Cute Doggie!! Shitsu??? And where's Ashburn? Im in WVa. I think like you....I've obsessed over the cancer word for many years, only I feared for ovarian cancer. I had my ovaries taken out Dec 17.. Path report came back good. No cancer in the ovaries. But 2 weeks later, I had bc. I worried about the wrong thing for years! When my oncologist told me my insurance may not pay for the genetic testing (and it was around $4,000), my hubby said he'd pay for it, but he wanted me to have it because he's had to live with my fear also. He know all too well how I obsess daily. I think I would worry myself into an early grave waiting for the "c" word to show its ugly head again. I know waiting for a yearly mammo would be unbearable for me. Every pain I have now, I think it's cancer somewhere else. So, ladies, I'm one who can't live with waiting.. It will drive me crazy. I've already lost poundage just worrying over this since Dec 30th. So, I think a double is the only choice for me. I know I'll never be the same, but I'll try..
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Mikita5: there is a good report in the DCIS forum that has a review of radiation vs mastectomy that might be of help.. good luck - I know the worry well!! I'm sorry this is so difficult and I wish you all the best in whatever you decide! (It is "Past Posts....")
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Mikita5: Thanks for the complement on my Diva. I have her sister, Darla, too. They are Coton de Turlear. They are from Madegascar; these two were born in Hungary and brought to New York. My sister actually bought them. I would have gone to the shelter and gotten a mutt.
Ashburn is 20 miles away from McLean, Virginia in NOVA (Northern Virginia). The rest of my family is in Montgomery County, Maryland which is a 50 mile drive. I always wanted to retire to West Virginia. It is beautiful country.
I kind of felt the same way. I wanted the worrying to stop. I, too, kind of feared cancer and did not want to even say the word. Once I got it I realized my worse fear was here and I could still handle it. I still don't like to say the C word. My grandmother had bc at 45 and lived another 36 years and died of something totally unrelated. My own sweet Mother died of pancreatic cancer and her brother, my uncle had colon cancer (doing fine). I knew our gene pool was polluted so I opted to be safe rather than sorry. That's not a decision for everyone but it was for me.
Whatever you decide is the right choice for you. Good luck and best wishes.
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Oh Deirdre and other sisters here, I was reacting to how Deirdre mocked my use of the word "thrilled". As I recanted later, I am thrilled with how I have responded to the surgery as the weight of the fear is off my shoulders.
I had wonderful breasts as I had a reduction about 5 years ago - very perky for a 30 year old, but I am 50! Didn't have to wear a bra with a 42D size! Of course I "miss" them, but do I mourn them? No. My husband said he would rather be kissing me than my "boob".
My reference to a woman crying over a bad haircut was to show the DIFFERENCE between what she was crying about and what WE are crying about! I don't know how that one got mis-interpreted.
I believe we will always mourn the fact that we have/had cancer. It has struck. We are now a statistic.
There is a saying: "It's not what happens to you in life that matters, It's how you deal with it."
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I think that mastectomy is such an emotional issue and on these boards you can only read what one says, you can't hear how they say it or look into their eyes and know how a comment is meant. We all react different to this beast called cancer.
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Mikita,
I opted for a lumpectomy with rads as I didn't feel removing "healthy'breast tissue a choice for me. My original thought was removing both so the risk of recurrance is basically nil and you don't have to worry anymore was overkill as not all people have a recurrance or another bc. Somedays now, I am not so sure of that. Maybe removing all possibility of further bc is the answer. I am not regretting what I have done, but have resigned myself to the fact that if I do have a recurrance or new bc that I will not hesitate to remove both breasts.
I am not trying to talk you out of bilat mast, thought you might just want an opinion from someone who didn't go the mast route. I feel this is a very personal decision and each of us is different. Bay states it very well as we all do react different. I do wish you all the best with your decision, my advice would be take your time in your decision and do what you think is right for you not what everyone else thinks is right for you.
Best of luck.
Penny
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Thanks, Penny, for your view. Sometimes, I feel exactly like you described your feelings. Why take off a healthy breast? Why not wait to see if it comes back, THEN think about the dbl mast.. But, it could come back as invasive or metastic, then what? Believe me, I've thought about it long and hard. I still have days I try to talk myself out of it. I"m headed to Johns Hopkins this Friday. I'm anxious to hear their side of it. I guess when I'm laying on the table, prepped for surgery, I'll have made my decision and it will be the FINAL decision. Until then, I worry, I lay there at night unable to go to sleep. I can't get it out of my mind. It has consumed every minute of every day and night and I hate it! I think I just want it gone, but I'll probably still worry about that 1% chance of it returning in the chest wall. Do we ever quit worrying??
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Interestingly, the first time I cried was while they were putting in the IV in the operating room. Tears began to run down my face and the nurse said "What's wrong?" and I said, "I'm scared." That was the first time I'd admitted it to anyone other than myself or my husband. They were so sweet! She held my hand until I was under and the guy putting the mask over my face (can't spell anaesthesiologist) rubbed the top of my head.
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Hello dsb_MI, I too have/had LCIS on the left. Was your LCIS discovered 1st then the DCIS? Just wondering because I now have a lump on the right and am so scared that it's the same or further advanced.
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2 1/2 years ago started with ADH on the right, then 6 months later DCIS on the right, 9 months ago LCIS was found on the left. I never felt any lumps. I also have dense tissue & lots of calcification so my mammograms/MRI's are hard to read. Not a day goes by that I don't worry. I believe I'll sleep better at night after the mastectomy. I see the PS 2/19 & hope he can schedule me soon.
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mikita,
I had a unilateral mastectomy last August because of multifocal DCIS. At the time, I decided not to have my healthy breast removed, because the mammogram and the MRI both showed that it was clean. However, I am currently being tested for Cowden Syndrome, which would raise my risk of cancer in the remaining breast from 4% to somewhere between 25 % and 50%. (I have cancer in my family, but not breast cancer). If the results show that I have Cowden's, then I will have the same very difficult decision to make as many of you. I really do not want to lose my remaining breast. However, if I develop cancer there, will I be as lucky as I was the first time, to catch it so early that I don't even need chemo or rads? Who knows? May we all be blessed with the wisdom of Solomon, because we all have such difficult, horrible decisions to make. I think Solomon had it easy.
Diane
Dx 8/11/2008, DCIS, Grade 3, Stage 0, 0/3 nodes
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I am not sure what you meant when you said, "I think Solomon had it easy." A breast, while important, is not a baby's life.
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