LCIS blog- preventative bi-lateral mastectomy
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I think the whole subject of trying to predict one's breast cancer risk is very much in its infancy.
I was really trying to find a number about my lifetime breast cancer risk (with classic LCIS and a weak family history) in 2007. But, then I found this editorial in a Pubmed covered journal. http://www.ncbi.nlm.nih.gov/pubmed/17148763 (Follow the link - the brown square on the right side of the entry- to get a free copy of the paper.) It examines the Gail model, which is probably the most commonly used breast cancer risk model (for example at http://www.cancer.gov/bcrisktool/). The Gail model specifically excludes women who have a history of having LCIS, DCIS, or breast cancer, so it wouldn't apply to LCIS women. Note the Gail model specifically says that it should NOT be used for making treatment decisions. http://www.cancer.gov/bcrisktool/ Why? They found that the Gail model prediction for breast cancer *for this 'average' individual* is 'better than the toss of a coin - but not by much'. The only risk factor that they said may be predictive for an individual are risk factors as large as a deleterious BRCA mutation. (A deleterious BRCA mutation can cause a lifetime breast cancer risk of up to about 90-95%.) But remember that only about 10-20% of women who get breast cancer are thought to get breast cancer due to a single gene mutation. About 70% of women who get breast cancer have no obvious risk factors (besides being a woman.)
If the Gail model is this poor at predicting breast cancer in a woman without invasive, DCIS, or LCIS (and this group would presumably include roughly 7 out of 8 women), then you know they don't know much about the risk for LCIS women.
For me, although it injects an extra shot of uncertainty, it helps me to know how little they understand about breast cancer risk *for an individual*. They understand pretty well how many women in an average group might get breast cancer, but they have very little idea *which* of these women will get breast cancer.
But the choice of treatment is a very personal, individual one. There is no right answer for everyone. We all have different feelings and situations.
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Individual decision - absolutely. LCIS dx recently, know all about the models out there (including the one not validated, but includes the validated risk factors of LCIS and density).......statistics are statistics and people are people. All I know is I hedged on door number 1 vs Door # 3 (tamoxifen is OUT due to VTE history). New lump in left took me off the fence.
I went from a B to an A from unrelated stress induced weight loss. 1/3 of my right breast was taken to remove the benign tumor I had (A- on the right now) where they found the LCIS. Breast tissue described as Kevlar. Mammograms WORTHLESS for me. Now with the new left lump, my decision is made. Doctor interviews in process.
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Best of luck to you, Simply Audre, as you research, discuss with docs and weigh your decision.
I'm having double MX tomorrow - -- I have been on the learn, research, discuss with docs and everyone else under the sun who's in the know journey since Feb. - - My LCIS/+ other pathology + difficult to read radiology led my br. surgeon to tell me in Feb. that I need to go this route. I've taken the time I needed to process it all, and for me this was the right decision.
Wish me luck tomorrow! It's surreal. . . .but time to get this in my rearview mirror -
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Hi Annievan! You will be in my thoughts tomorrow. I am right behind you~ aug 14 . I want it over too! Please let us know how everything goes...
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Thank you so much, Shabby - - I remember when you scheduled your surgery so far out (back in May?), and I was thinking. . . how is she going to make it that long? Then, I've been at it for almost as long - - -
Will catch up with you after. . .
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Shabby and Annievan,
I'm here cheering both of you on! (drain free I might add). Lots of prayers for you tomorrow Annievan!
Lori0 -
Hooray for you Lori! Down with the drains!
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Best of luck with everything Annievan, wishing you minimal pain and fast recovery! I did what you are doing, got through it, never looked back and really glad I did it! Take it as relaxed as you can and you'll be through quick and on the road to breast cancer free life. (((hugs)))
PS - suggest you snap a few photos of your boobs for future reference. I didn't take too many pic, and sort of wish I did. At least I have a few.
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I never thought about taking pics of my current breasts, but hey....great advice. I am sure my husband won't mind a few discreet snaps.
Best wishes to annievan, hope the recovery is going well and to shabby with the countdown to August.
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You ladies are so awesome! Remember there will be good days and bad ones so pop a Valium ( if need be) and sit back and watch stupid reality tv while your body heals. It worked for me:)
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I wanted to chime in on this thread as I recently had my annual GYN exam. I spoke frankly with her regarding my decision to have a PBMX next year. Initially I was ALH, but was recently upgraded to LCIS. My GYN asked if she could be honest with me.....I said I would accept nothing but....she said every patient she has ever had that made the desicion and followed throuygh with a PBMX has never had one regret afterwards. These words strengthened my resolve and I look forward to my luckiest year ever, May 2013!
I hope someone else finds this encouraging also.0 -
did they ever recommend tamoxifen for you back in 2007, when your dx was ALH?
Anne
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I had a PBMX for LCIS <1cm 15 yrs ago and have never looked back!!!!!
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Hi awb,
All options were discussed with my BS including Tamoxifen. I did my research and decided not to go that route. My best friend had bc 6 years ago and just finished her Tamoxifen last year. Also, my husband's first wife had both tamoxifen and herceptin, but with serious side effects.
When I look back, my BS did not press the issue very hard. In '07 I was just turning 50, maybe the thinking was that the meds only decrease the risk for 10 years, then at 60 what do you do?0 -
Interestingly enough, my sister tried tamoxifen after chemo and after her Elton and had the worst side effects. She had to get off after 2 treatments. Apparently there is s blood test you can take that she found out about to see if you are tamoxifen tolerant. She took it and is not. Anyone considering this drug should look into this test beforehand. Also, there was a U Penn study that was done on mastectomies and those that had for a preventive mastecto
Y had a high rate of 90% satisfaction afterwards. I believe it I'd because there is do much thought going into that decision beforehand.0 -
CYP2D6 is the name of the blood test if anyone is interested.
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the genetic test for tamoxifen is not exactly a "tolerence" test. What is does is show if you are one of the people who does not efficiently metabolize tamox into it's effective state. For people who metabolize tamoxifen inefficiently, the drug will not be very effective for them.
Interestingly, per my onc, if you have heavy side effects from tamox, such as hot flashes, these mean the drug is metabolizing very well into your system. This is considered a good sign, as the tamox is doing what it's supposed to do. It is most frequently people who have few side effects who will have the gene varient that causes tamoxifen to metabolize poorly. Apparently 7-9% of caucasian people have the poor metabolizing gene for tamoxifen.
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Hi Beacon,
I confirmed with my sister and you are correct on the tolerence level. She wanted to add that it was because of her side effects that she pushed for the test. In the end, she was glad that she had the test done since it was determined that tamoxifen would not work for her.
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When I was considering PBMX, I posted somewhere on this site, but cannot locate. I received lots of support. Just wanted to update. I had concerns that with such fibro-cystic breast tissue, any cancer might not be detected early, even with all that monitoring, mammograms, MRIs & biopsies.
Had surgery 8/24/12. Pathologist told surgeon she's never seen so much fibro-cystic tissue. She finally found an extremely small (.2 cm) tumor of ILC in left breast + ALH in both breasts. Ironically, although biopsies had turned up LCIS in both breasts (2005 & 2012), the pathologist found no LCIS after surgery. Surgeon said that ILC is a "sneaky" form of cancer because it grows more like a paint splatter than a cluster. So, my decision proved to be right and timely. But even without finding cancer, the decision would have been a good one. I wanted to reduce the risk as much as possible.
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Wow, SherriR - I'm so glad you had the surgery! Sounds like your gut instinct and all the signs leading to complicated breast tissue led you in the right direction! That's the tricky thing about LCIS and ADH/ALH. . . you never know, and the decision is so hard, but you certainly don't want to have those warnings and miss something. Glad your ILC was small and now you've already had the surgery. How are you feeling these several weeks out from surgery? Do you know if you will have to have any further treatment for the ILC?
I had BMX after finding of lots of ALH and several LCIS places last winter. . . some ADH as well. I have "extremely dense" breast tissue and was headed for high-risk lifelong monitoring. . maybe miss something. . . prob. lots of biopsies and worry, so the surgeon suggested I do the BMX. Surgery with TEs was in July, and I'm scheduled for TE to implant surgery on Monday! I'm a little anxious right now, as I think we're going a little fast on this next surgery. I just don't feel up to par yet, still having muscle spasms in both sides after the expansions. . . Oh well, maybe it'll all feel better after the surgery.
Glad you made the good call on having the surgery and they've removed that sneaky ILC. Wishing you all the best in your recovery. Keep me posted!
Best,
Marianne
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Thanks for sharing Annie and SHerri.
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Sherri- Your post really hit home with me. I have known for over 30 years that I have fibrocystic breast tissue with bilateral multi-focal calcifications and since my paternal grandmother had bc in her 50's, my ob/gyn never messed around. I have been having regular mammos since I was 30 (I am now 55).
Five years ago, when I had my first biopsy, I could not imagine being on the journey I am now, but after my ALH diagnosis in 2007, I kept an open mind and tried to be positive about keeping my breasts as long as they never found a bc. Four biopsies later (three were done as lumpectomies in the same breast) and an "upgrade" to LCIS, having to go back every six months for "surveillance" and I AM DONE.
Even though I love my BS, I can't find a PS in my area that specializes in breast recon, so on the recommendation of one of our board members (thank you Arlenemarie) I have an appointment in Dec with a new bs who works with one of the top plastic surgeons in the country.
My ultimate goal is to have PBMX next summer. I plan to live free from the anxiety of the "what if" and be around for our children and grandchildren for many years to come.
On another note, I would like to say to all of those who have been down this road already, Arlene, Sherri, Annie, SallyO, Lorriio,....and so many more..... I really feel blessed to have the support and feel the confidance you ladies show to the rest of us. Without that, I would still be wondering if I was alone in choosing this path.
I spoke with a woman today who is a friend and someone I work with. She had a PBMX more than four years ago before I knew her well. As I was telling her about my plan and that I had found this group, she said that she wished she would have had someone to talk to while she was going through it. At the time she felt very alone during her journey. She also said she has never once regretted her choice. Her very words, "It is a very personal decision and no one can tell you what is right for you". I can not express what this forum has done for me and I look forward to contributing in the future with prayers, cheers, info and best wishes for the personal choices of all.
Marie
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Thank you Marie. Keep me (us) updated after your consult in December
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Hi everyone,
I have been AWOL for a little while but I have been checking in to see how everyone is doing. I've recently had some cervical spine surgery so I feel like all I have been doing since my BC diagnosis in 2008 is recovering from surgery!!!
I have dealt with the diagnosis of LCIS and all that goes with it, the surveillance, tamoxifen, the constant biopsies, a marker that couldn't be located on the day of surgery to place the wire, resulting in 60+ mammos taking over 3 hours (YES, seriously!!! It took 5 women in the room with me, one of them holding my boob in place and pushing my back into the machine...her hand is in the xray...) the worries, the waiting, the questions ("is this really breast cancer?") the model that showed I had a 93% chance of getting an invasive cancer in my lifetime, a sister who is also a BC survivor accusing me of having mastectomies unecessarily, another sister just diagnosed this year with IDC, (that makes my mom, my maternal aunt, both sisters and me - and it doesn't run in families???) and on and on. I would be happy to answer any questions or be a listening ear to anyone facing or going through PBMX. It is an individual choice and very personal and I can say that I have never regretted it for one second. LCIS is tricky. I wasn't willing to let "it" make my decisions. I got to beat it - in a little different way.
XO Kimber
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Hi Kimber,
Don't you feel (in a weird sort of way) that it was a blessing? I do. Especially with my family history. Thanks for sharing. I have to admit that yesterday, I had to have a chest x-ray so I went to the local Doctor's Express since I don't have a regular physician (and they are cheaper). After the x-ray, the froendly doctor came in and sat down and said, "When did you have your mastectomy?" All I could envision is him seeing these two big blobs of implant on the screen and just kind of chuckled. I told him I had a preventative mastectomy because I was diagnosed with a "grey" diagnosis called LCIS and my mom died young from breast cancer and my sister currently has IBC. He stood up and hugged me and said, "What a brave and wise decision." Wasn't that sweet? I never even met him before
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Awwww - yes that was very nice of him!! Yes I totally believe it is a blessing and a path I was meant to follow, for some strange reason. You DID make a brave and wise decision!!! Stay in touch!
Kimber
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That is a Doctor found few and far between most...and truly a moment to treasure.
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Hello Arlene, I too am a blogger and have a section dedicated to "the journey"... I went into a BMX (after two biopsy's, two micromammo's and a MRI) knowing I had DCIS high grade on the right and ADH (pre DCIS) on the left. My final pathology report also showed LCIS and ALH. Needless to say, I'm very glad I made the decision to have both breasts removed even though the reconstruction process has been difficult.
As far as immediate reconstruction goes... if I were to do it over again I would have waited but that is because I didn't focus enough on it. All I could focus on was the CANCER.
Ask A LOT of questions. Make sure you are comfortable with your PS. Ask if he/she will be opening the pocket under your natural fold. They do this to create a natural droop. This was a major cause of pain for me, not to mention 4 additional surgeries.
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Good evening all. I'm finally having my exchange surgery tomorrow! It's been just a little over 5 months and I can't wait!!!!!! The only bad part is my surgery isn't until 2 so I will be hungry and thirsty all day. It will be worth it to have these rocks off of my chest!!!!!!
I hope all is well with y'all!
Lori0 -
Yay Lori,
I remember how light they felt after getting rid of those TEs. It's been almost two years in a few days and I barely even think of my boobs anymore (which is a great thing). I wish you all the positive energy imaginable on your exchange and hope you like them as much as I do mine
Arlene
***Green Monkey..thanks for your imput. I absolutely agree on getting the best PS since he/she will control the look of the end product (your new boobs). I swear I am a Dr. Bucky "groupie" and have since had two (soon to be three) friends use him just for plastic surgery after seeing what an amazing job he did with the reconstruction. I love him!!
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