LCIS blog- preventative bi-lateral mastectomy
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hi alldiagnosed two weeks ago with lcis. this after 10 biopsies over 4 years. i have adh and alh. my mother also had bc young. so, while i waiting on this latest pathology, i felt like i was literally having some sort of breakdown. you would think after 10 biopsies, it would be old hat. it just got harder each time, like i was pushing my luck each time. i thought i cannot do this again. as a matter of fact, as i was being wheeled into the OR, i told my surgeon that if this was anything but totally b9 that i wanted a mastectomy. (be careful what you wish for)so, i am told it is lcis. my immediate reaction was relief that it wasn't "cancer". But i knew that lcis is tricky and I knew a mastectomy was in my near future. No high risk suvellience for me...there was no way that i would subject myself and my family to this testing every 6 months. for me, that is no way to live...So, no tears, no trauma, no drama. relief? denial? what? is this normal??? am i oblivious to how hard this is going to be? should i see a therapist? have my consults next month........what do you think?0
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mykids-Thank you for your encouraging words!
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shabby,
I can identify with what you are feeling. Kind of an out of body, minimal emotion experience. I am a therapist, and ironically work with several cancer patients and talk a great deal about their experiences with the illness, even with that it somehow seems unrelated to me! Maybe the denial or minimization or what ever it is, is necessary to conserve emotional energy to allow us to do this huge thing. Just a thought
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I am so glad that there are other women out there that feel PBMX for LCIS is not a crazy decision. I fugure after my excisional they found ADH and other stuff that I had better just get this done for my sanity , because the wait and the anxiety is too much for me. and the Tamoxifen and close nmonitoring and biopsy .. heck I cant do it ... been doing the monitoring since 2009 ... and now 2 years later and LCIS then ADH , who knows what 5 more years would bring .. I am just happy to know , we are here to support each other .. thanks for being here
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Hi Lisamarie,
I am also from Long Island. Just diagnosed with lcis and doing consults for a pbmx. can i ask you what doctors you are using. trying to get 3 different consults.
thank you
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Shabby , I sent you a message with all my info ... may be nice to have someone local to go through the experience with .. not that it's a great one to have to go through ...
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Lisamarie and shabby I am from Long Island too
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It has been 2 years since my diagnosis of DCIS on my right side and LCIS on my left side. I was given the choice of lumpectomy/rads and chemo or MX or DMX. My Doc said being diagnosed with both types in different breasts made my decisions more complicated which I agree.
I had had biopsies in the past on my right side and had felt it a ticking time bomb. I have absolutly no family history of BC at all. I ended up chosing double MX mainly because of my kids. Telling my kids I had cancer was the most horrible and heart wrenching thing I have ever done and just couldn't imagine putting them through it again. Also my son was most terrified of me going through chemo so my choice seemed set for me, at least.
Sometimes I still wonder if I should have waited on the left side but having gone through the MX for me it would be harder knowing what I now know and would feel more day to day worry and dread. Do I miss my breasts? Everyday! Am I used to my new breasts? Some ways yes but I don't know if I'll ever feel like they are really part of me.
I had the lat surgery and that has brought its own share of complications with back pain and "fat pillows" under my arms. Yes the also sometimes feel cool to touch. I have No feeling at all and sometimes think about that movie Mrs Doubtfire when he/she catched her boobs on fire and doesn't notice. That would be me! My son who is special needs came to give me a hug shortly after the surgery and his comment was "well that was different!" He wasn't ever really able to understand what all happened so I thought that was interesting and probably the most honest comment I would ever get. Mine are a little bigger than my real onces which I don't really like and they are a lot heavier.
For me I feel like I made the best choice I could with the information I had at the time and I think really that is all any of us can do. Now I do wish I had done a different reconstruction method but at the time I didn't know about options such as fat grafting and such.
Leaf - really loved reading all the information you gave at the begining of this thread. Love that you have done so much research and make it so easily available - really wonderful of you. And ArleneMarie - your blog and this thread - thank you so much for helping us all to understand more about this "grey" area as I found as well. Doc's can't give you specific advice as to what you should do since so much goes into what it means to have LCIS and the individual and history.
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why all this LCIS in NY state? (I'm from upstate----near Albany)
anne
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Stanzie-----so sorry to hear of all the complications with your reconstruction. Just wondering why the initial recommendation for chemo. Did you have an invasive component to your DCIS (a microinvasion?)
anne
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I had to join this club also....another one from Long Island!!
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AWB- Interestingly enough, I strongly believe that being born and raised in NJ is the reason I have breast cancer. I can safely group NY in with that as well since both states were dumping grounds during the Industrial Revolution. I left the state at 18 and have lived mainly in CA but I strongly believe there are toxins in the ground water and environment back on the east coast. My sister has BC, my mom died from it (born and raised in NY) and I found out that two of my friends from high school have BC and will not live past this month.
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Wow it's crazy but I think they say that Long Island has the highest breast cancer rate in the US ..I am having my PBMX at South Hampton Hospital. I am in Center Moriches . I just cant belive how many of us have LCIS ..
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This data from a 2011 paper (incidence by state in the USA)
Among non-Hispanic white women, breast cancer incidence rates ranged from 110.8 cases per 100,000 females in Arkansas to 140.4 cases per 100,000 females in California and the District of Columbia. Breast cancer incidence rates among African American women ranged from 73.2 per 100,000 females in New Mexico to 131.0 per 100,000 females in Delaware.
When comparing incidence rates among states, it is important to consider that incidence rates reflect the intensity of screening as well as disease occurrence. The percentage of in situ breast cancers, an indicator of mammography utilization, varied from 14.9% in North Dakota to 25.1% in Massachusetts among non-Hispanic white women and from 14.9% in Mississippi to 26.8% in Connecticut among African American women. The proportion of regional/distant stage cancers ranged from 29.7% in Vermont to 39.1% in Utah among non-Hispanic white women and from 38.1% in Iowa to 53.0% in Arkansas among African American women.http://onlinelibrary.wiley.com/doi/10.3322/caac.20134/full
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I still believe there is a cluster in my town in NJ since my mom, my neighbor's mom, my sister and I had bc while the neighbor's son 2 doors down died of leukemia at 18 and the other neighbor died of cancer ten years ago. Too coincidental.
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I grew up in Ohio, but my mother, her two sisters and their mother all had BC; they lived in the house for decades, unlike today, when households tend to move on average every 7 years. After my LCIS diagnosis I was BRCA tested to see if I should remove ovaries along with my bmx. I'm negative. My mother --only survivor in the bunch--refuses to be tested, so I do wonder: Is there BRCA in my family and I happened to get the gene copies from my father, or are we all negative, and there was something about that house in Cranford, NJ that brought conditions ripe for triggering BC in my family. Certainly I will never know, but I have thought about it quite a bit.
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Hi Carol,
I think about it a lot. Glad to know I am not the only one.
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Shabby-
This isn't very timely since you posted the comment over a month ago that you didn't see any stories related to NSM, in case you haven't found it yet, here is a thread on that topic that I follow that is very active:
http://community.breastcancer.org/forum/44/topic/745796?page=108#idx_3215
Hopefully this helps you! I was diagnosed with LCIS last year, underwent NSM on August 15th, and just had my exchange surgery on Feb 21st to complete my reconstruction. I am very happy with my decision and haven't regretted it once. I just didn't want to take the chance of an invasive cancer not being caught until it was too late. My breasts were very dense. When I had a mammo last March, they couldn't see the lump that the doctor and I felt. They did an US and saw a radial scar with a core the size of a walnut, and areas that radiated out from there with small cysts, overall questionable area was the size of my fist. The BS said it was mysterious and wanted to remove 1/3 to half of my breast so they could determine what it was. I said absolutely not! A core needle biopsy showed it was benign, but an MRI confirmed that it was suspicious, I was very confused. But I did agree to an excisional biopsy which is what ultimately showed the LCIS. I'm so amazed by the results of the surgery, they aren't perfect, but I wasn't perfect before surgery. And my PS said that they will continue to evolve over the next 5 - 6 months as well. I still can't believe how much progress has been made in this area. Now more surgeons need to be trained in NSM, and let women know that NSM is an option in a lot of cases.
Best wishes to you!
Shannon0 -
Shannon,
I'm a bit confused. What does NSM stand for?
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NSM means nipple-sparing mastectomy, at least that's the only way I've ever seen it used here. Is there another meaning?
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Thanks. I am so used to using PBMX that I forgot about NSM. Here's one PBNSMX....Preventative bi-lateral Nipple Sparing Mastectomy. All these acronyms make me feel as if we all work for the government!
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Hi LCIS friends - -
Ok - I may be in the loony bin before LCIS leads to anything worse. . . . After weighing this for months, researching, meeting with surgeons, talking with everyone who knew anything about it, I had finally made the decision and have scheduled PBMX with immediate TE reconstruction started for end of June. Just found out today that my PS has been put on immediate bed rest for her pregnancy and all surgery is off til end of Oct., at the earliest. I'm so grateful to be a mother and have lots of empathy for her. . . but I think I might go crazy to open this up again and have to make more decisions. Which would be better. . .just put the whole thing on hold? Have the BMX and wait to start recon? Start all over trying to find a new PS? Forget the whole thing?
Sorry I'm whining. . . just thought some of you might be able to relate to the strange dilemas that LCIS can present. It's "not an emergency", but decision for surgery is tricky, and once I had made the decision, I guess I was anxious to get this all over with - - - maybe this is a sign that I'm not supposed to do it afterall?
Do any of you ever feel like running away?!
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I feel like runnning away everytime I go for some kind of testing. While I haven't made the decision to do a PBMX I can certainly understand your frustration. While LCIS is not an emergency it is certainly something that is never far from my thoughts. Good luck with whatever choice you make.
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Yes Annievan! I decided on a rt Mx and it is scheduled this week 5/17. I switch between just wanting it to be over to thinking about canceling it to thinking maybe I should have the BMX. But medicine does not have the answer to the question- what is the best treatment for LCIS? So we are left spinning the roulette wheel. I don't blame anyone for betting safe and going with the BMX. One day and one step at a time for me.
Annievan my advice is to weigh how stressful it would be for you to wait. If you are one of those that can put it on the back burner, then wait. Depending on what kind of reconstruction you are having you may not have as many options if you delay that part. Taking more time may make it more clear what the right course is for you. If it is going to drive you crazy then find out who your PS would recommend in her absence. Certainly your BS works with more than one PS.0 -
Hey Janet and Dobie --Thanks for your positive thoughts! And you're right, I do just have to weigh well I can deal with this either way. . . haven't figured that out yet, but I'm working on it
Good luck to you, Dobie, on the 17th - - will be thinking about you that surgery and recovery go well and without a hitch and that your path report is clear. Looks like you've been through a lot and dealing with this for a long while. Sending positive thoughts your way!
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Hi Annievan. Saw your post on the June thread as well. It can't hurt to meet with a PS or two recommended by your BS and current PS. You might find that you are completely happy with a new one. I hope everything works out. Now that I've made the decision I'm wishing I could just go ahead and get it over with. The end of June seems to be so far off. Best of luck to you. Keep us posted.
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Thanks, Lori -
I suppose once I hear something from either the BS or PS office I'll know a little more about what they're doing with patients left in limbo. I'm disappointed because I've been feeling like you. . . I'm ready to get it over with. . . end of June seems like this is dragging out forever. I really feel awful for the other patients who are left mid-stream - - they have expanders in, but now have to find a new surgeon to finish up the process.
Darn - I was thinking we were going to be going through it all at about the same time!
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My "good breast" showed 4 suspicous spots on the MRI. My BS was concerned about one of them. He recommended BMX once he saw that because he said I would have to have biopsies every year. (I think he knew it was LCIS). Initially he told me not to do the double. Glad I did the double!
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Hi Annievan,
I would do the PBMX with the beginning of reconstruction at the same time. Your body would have to endure two surgeries if you did them seperately which means you will have all sorts of drugs inside of you TWICE. I would have to say that the drugs were the worst part since they messed with my body and my mind. It's now been over a year and a half and I barely ever think about the MX. It's probably why I rarely check this website anymore. That's a positive thing. I also have to say that I am amazed at how many people from my hometown and my HS class have been diagnosed with or have died from breast cancer. Once again...NJ...which I truly believe is a toxic dump and I am glad I got out at 18. That being said, my husband constantly reminds me of what a wise choice it was to proceed with a PBMX in my late 40's since it seems inevitable that I was going to be diagnosed with IBC at some point. The blessing of LCIS is that it buys you time so don't worry if you have to put off the mastectomy for a little while. If you are comfortable with your doctors after your research, my humble opinion is to wait and stay with the ones you truly feel comfortable with going forward.
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Hi all!
This might be a silly question. but all I have read states that LCIS is not detected on mamo and does not cause a lump but usually found as an incidental finding. So how can you be monitored so closely to detect an early cancer??? Mamo, MRI, ...
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