PBMX for ALH or ADH?
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Yes I did! I am only 3 weeks out from my surgery but can tell you it was the best decision I ever made! I also would be happy to answer any questions!
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Thanks Valerie,
I meet with my BS on Monday to go over final path from the lumpectomies. She has already told me I need to take Tamoxifan, which I am hesitant todo. Considering all options at this time. I think ALH ADH are really stressful, I do not have cancer (thank God) but I am not normal either. I still have the constant worry and stress. It is a crazy and confusing middle ground for sure.
Cin
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Valerie,
I am having lumpectomy on 1/24/13 for ALH. So I will know more after that. I m willing to have PBMX. Have been playing the waiting game for 2 years already & don't want to do it much longer. BS suggested Tamoxifen, but @ this juncture I m not willing to take it & she was honest & doesn't truly believe in it. She will refer me to an oncologist.
Thank you for sharing and also thank you for listening!!
Good Luck to you!!
Valerie 20 -
I too just found out I have ADH in my left breast. I'm seriously considering the preventative bilateral mastectomy since I cannot imagine the anxiety that continual follow up , biopsies , waiting for results etc. would cause. Having just been through that, I can say that i would be willing to do whatever it takes to lower my risk as much as possible. Glad to have found this site! I was feeling rather alone In my worries:)
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I had PBMX two days ago and even though I am in some pain right now, I believe it was worth it all to not have the anxiety that comes with the 6 month roller coaster ride. My mammos and MRIs were further complicated by the scar tissue I had from a previous breast reduction and very dense breasts. I believe that even if final pathology comes back with nothing, not even ALH, I still did the right thing. I have been following this thread for quite some time and, in fact, this thread was where I gathered enough information to feel confident in my decision. Thank you, Valerie, for starting this thread topic.
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Peanutsgal, how did you get insurance to cover your mastectomy?
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mnkaren,
From what I understand with my insurance company they took several things into account.
ALH
Family history
Multiple excisional biopsies
Dense breast tissue with scar tissue throughout
I could not take tamoxifen due to a history of DVT
It all added up to be more cost effective to have the PBMX, than to continue with biopsy after biopsy. My doctor went to bat for me and it was approved on the first application.0 -
Peanutsgal, thanks so much for the great information. I've been wondering about this for a while, when insurance would pay for a PBMX.
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Peanutsgal--Oh, I thought you said even if your path didn't come back ALH, you were happy with your decision. Sorry, I misunderstood! :-)
I'm in the same boat as you. So many excisional biopsies, I'm over it. Some things just left "to watch" because I am refusing more at this time. I had a radial scar, sclerosing adenosis, papillomatosis in a huge area last year and lost half my right breast (literally). My plastic surgeon and breast surgeon said my case would be more of a reconstruction at this point buy they both agree the rest of the breast tissue should go. The scar tissue is unbelieveable at this point. Even MRI has issues with it. I start my 6 month checks again next month with a mammo (which NEVER shows anything) and ultrasound. MRI will be 6 months later. I need to make a decision. If anything issues a red flag, that will be my go ahead and my decision will be made. I told both of them the next excisional biopsy will be the mastectomy. The only tissue left in my right side is so dense and hard, it's awful. My surgeon just cringes when he examines me.
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mnkaren, my bs used to joke and say that he would break out into a sweat when he saw my name on his list of patients! He did not bring up the PBMX option, I had to. Studies have shown that women who bring up the idea themselves are much more likely to be satisfied with their outcomes vs. ones that are being told that they need to have MX. The good thing, if there is such a thing, about having ADH or ALH is that there is plenty of time to make a decision about whether or not to go the BMX route. I thought about it and prayed hard for 2 years before I finally decided to do it. I would be more than happy to answer any questions if you want to PM me.
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peanutsgal - so glad you are doing well - I don't think the surgery is really that bad. My insurance also paid -surgeon says when you are diagnoised with ALH it is cheaper for insurance in the long run to do PBMX instead of MRIs, biopsies etc. I am glad you found this thread too because I don't think there are too many that do have PBMX for ALH or ADH and most people think it is much too radical. I only wish I could have done it sooner.
Hugs to all - Valerie
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Well, I'm back. Happy holidays to everyone
I did not opt for Mx after all... yet. Next mammogram again in a few days on the 28th. I have a bad feeling... Background, all in the right breast: After my very first mammogram ever / age 38, I immediately had a few more, then US and CNB which lead to two guide wire excissional biopsies Nov 2010, two different quadrants, two golf ball sized hunks removed, ADH; there is a third spot that looks same as others on imaging but they are "watching" it, along with what my oncologist referred to as "some lymph nodes." (No, I am not really a fan of Onc, she is brilliant, always cited as one of the best in the country, largely for the studies she runs, but actually seemed rather irked when I mentioned PBMx as a course I was considering.) The margin on the larger spot was less than 1 mm. I had close monitoring, onc prescribed tamoxifen which, after talking with my ob gyn and bs, I refused. I had the frequent mammos and MRIs, which I hate even with taking Xanax for them. I sent my slides to Vanderbilt for second opinion, same dx. Recently, that breast has been hurting -- I have had pain pretty much consistently for a couple months, sometimes a dull ache, sometimes worse. Also very itchy. Even more troubling to me is that my shoulder and arm on that side have really been hurting, too. And my bra runneth over now on the right, also. Given the three year interval, I know it isn't healing effects anymore. (My ob gyn's wife started with dcis and went the conservative treatment route, incl tamoxifen, bc kept coming back, worse, she had chemo, rads, came back again, she finally had bmx and then she also ended up with uterine cancer / hysterectomy. Poor, poor dear. Her bs is also my bs.) So with the full support of my ob gyn and bs, I've made the decision of PBMx with reconstruction when I get results that I think are pretty much inevitable next week. I have large breasts, even considered elective reduction surgery before any of this started bc of the effects of two pregnancies. I want to look like me, a bit smaller would be fine though 
Sorry to ramble, I haven't even had coffee yet; I'm a bit nervous. So: saline or silicone? I am a devoted stomach sleeper, will that no longer be an option? Will one type help that to stay an option? Does either make you float? Does either make you colder in winter? I have read that some women go home the same day, is that possibly true?0 -
I am 51, and have had breast issues for over 20 yrs with no bc diagnosis. ADH was found July 2013. At my 6 month check up yesterday the BS said she has her antennas up in my case. I only have two great aunts who had BC but with my years of "stuff"...bleeding, lumps benign removal, cysts, fertility drug use (the jury is still out on that one), extremely dense breasts. BC would sneak up on me. I know she would do a PBMX if I pressed but I don't think that it is warranted right now.
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This is a very interesting thread. With extremely dense breast, ALH and ADH am I insane for considering this? I simply can not imagine going thru the stress of the last 2 years over and over. It is such a personal decision so I thank you all for sharing your insight.
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I am 55 and my biopsy results were one area of ADH/ALH. I know I am lucky that I didn't have cancer and that my risk factor is only 21%...no family history of breast cancer. I've been on Tamoxifen for 6 months, but recently have been approved for a prophylactic bilateral mastectomy. I am having a difficult time making the decision to jump on it or continue on the Tamoxifen. Tamoxifen has been a bit brutal for me, but the current side effects aren't what makes me consider a bilateral mastectomy.
I think the factors that make me want to go for the the mastectomies are: 1. once Tamoxifen therapy wears off, I'm back at my original risk with no recourse to reduce risk at that point--so it's more of a risk deferral than a risk reduction 2. With increased surveillance of MRI/Mammo alternating every 6 months, odds are fairly high I'll have further biopsies/I have very small and very dense breasts 3. With small breasts it seems more likely that cancer could so quickly go to chest wall because there's really not much other tissue to go to. 4. while the increased risk isn't huge, I do worry about endometrial cancer from the Tamoxifen
The concerns I have should stay on the Tamoxifen are: 1. Bilateral means no turning back and it is drastic and so painful 2. How do I deal with having no sensation in my breasts, when they have always been my erogenous zone 3. I have a brand new first grand baby due 8 weeks after the scheduled surgery -- will I be recovered enough to fully lift her, enjoy holding her and be strong enough to help my daughter out?
Any insight or sharing of your experience with bilateral mastectomy would be greatly appreciated. I just need to make my decision soon - I don't want to do it after the new grand baby is born.
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Would really love to hear the recovery experience for you as well as the emotional ramifications of having no sensation in your breasts, if you're comfortable sharing.
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whatayear---just a few more things to consider: 1) tamoxifen is thought to keep working to decrease risk for 5-10 years after finishing the 5-year course 2) after tamox, you could take either evista or aromasin for further preventative measures 3) having additional biopsies in the future is not a given with an ADH/ALH diagnosis 4) the risk of endometrial cancer from tamox if extremely low , <1%.
I was diagnosed with LCIS almost 12 years ago (a step further along the bc spectrum with double the risk of ADH/ALH) and my risk is further elevated by family history of bc (mom had ILC); they feel my risk is about 35%. I took tamoxifen for 5 years and have now been on evista for over 5 years; I continue high risk surveillance of alternating mammos and MRIs every 6 months; I have never needed another biopsy or lumpectomy since my original surgery and diagnosis. (fortunately, my breasts are easy to image, density decreased by tamox, a benefit from the medication). These decisions are so personal and so diffucult, I wish you well with whatever you decide. Just be sure to have a yearly transvaginal US if you go on tamox, to monitor both the uterine lining and the ovaries.
anne
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awb -
Thank you so much for sharing your experience. Your good outcome is very encouraging. I also appreciate the information you shared and will take it all into consideration. Unfortunately, when the onc had me have a bone scan, I already have osteoporosis so I'm not a candidate for Aromatase Inhibitors. She did talk about keeping me on Tamoxifen for 10 years rather than 5 if all is going well. I'm having a difficult time thinking about feeling like I am for 5 years, let alone 10 - just have numerous side effects that make me feel crummy. Still - I can't get too much more overkill than BMX. It is enticing to be pretty much worry free and be done with these side effects, of course inbetween would be the awful recovery and loss of my breasts. I understand that I'm lucky that I even have the option to make the choice - I know so many either don't have the option available or have to do the surgery out of necessity, or much higher risk.
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so if tamox is out for you (due to difficultly tolerating the SEs), and aromasin isn't a choice (due to your osteoporosis), ask your physician about evista-----it is an osteoporosis medication, also used to help prevent invasive bc in post-menopausal women. It is good for your bones, and it's also good for your cholesterol. (I'm taking it primarily as a bc preventative, but I also have osteopenia and cholesterol that is creeping up, so it's good for all 3 reasons for me!)
anne
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This was the craziest year of my life, having 4 kids and being active 40 yo working woman, i found myself in
September of 2014 DX with ALH in both breasts, talked with three surgeons and read all research and studies , i knew myself as a person that can’t do anxiety, i have decided on prophylactic mastectomy, two out of the three docs said its NOT
the standard of care for my situation as there is no family history but they didn’t have answer when i asked about quality of life with fear and tamoxifen SE, long story short, i did first surgery on January 2015 and exchange in April
2015. I was aware of all possible complications and took an educated decision. two months after the exchange surgery i look and feel great, i had no complications and pain after surgery was tolerable, i have wonderful esthetic
results and NO pain what so ever or limitation in movement, i do yoga three times a week and cant be happier. there are risks and it is very personal decision. but for me, it was the second best decision of my life(first was having my kids
)i wish all of you great health and and all the best.
if you have any questions don’t hesitate to pm me.
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Just want to add to awb's points about evista-- with a dx of ADH, I was leery about Tamoxifen, since I have had endometrial issues in the past, and already have osteopenia, so was hesitant about AI's as well. I deliberated and hemmed and hawed for nearly 4 years and finally decided to give the evista a shot. Glad I did, since I have NO side effects and it's comforting to know I have one more weapon in my arsenal
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It is good to find this discussion. I am feeling alone in all of this so any feedback you may have I would be grateful for.
I have been reading a lot of info. here and other articles to learn as much as possible the last month. Had to have a stereotactic biopsy because of new clustered microcalcifications (several foci) within a nodule and scattered in other breast. I am waiting to see a BS because of a path report from CNB (from 6/2). The path report (sent to Dr. Stuart Schnitt @ Beth Isreal Deaconess for expert consultation) is uncertain as he could not distinguish cytological atypia as ADH or DCIS and it is in the context of Usual ductal hyperplasia and Apocrine Cyst. There is also PASH diagnosed. I am 50 and have a history of fibrocystic cysts since about 30 and I have small A cup breasts. I have a strong family history of Ovarian (my maternal aunt was BRCA tested about 10 yrs ago as negative). Also have extremely dense breast tissue (4).
I tend to be proactive about things and also have a lot on my plate (other family stressors/illness) and we do not have extended family support. Because of monumental stressors this past 5 years especially, I feel that my psyche cant handle on going stress of more biopsies and tests and I don't want to take Tamoxifin. I am worried BS will just say get a lumpectomy and we will watch it. Because of multiple foci (other ones that were not biopsied are probably atypical also if not DCIS?) and very small breasts, I am thinking the 2.9cm by 1 cm area (plus 1 more cm margin at least) there wont be much left! Does this sound like enough of a list that a BS and or insurance would agree to BMX? The waiting is driving me crazy!
I am waiting to see a breast surgeon that my GYN suggested next week and also planning to have my ovaries removed this month. When I called the BS office to ask about which plastic surgeon they work with, I was told that since I am not diagnosed with cancer a BMX would not be recommended xment and that they are booked up anyhow until October. I did find another BS name and I have a plastic surgeon in mind.
It was good to get all of that out....thanks so much for starting this thread.
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After my dx of ALH and ADH I was sent to a genetic counselor who put a number on my risk. That helped convince the BS to do the surgery. They drug their feet though. I made it a point to politely bug his nurse like clockwork weekly. She finally submitted the paperwork and the approval was very fast w no issues on the part of the Insurance co. It took another month and a half to get into the PS.
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Hi AMB, good luck. With such an extensive area, the odds are greater that it might be DCIS, in which case it won't be prophylactic. I have had the ADH/ALH diagnosis once, and again ADH on core biopsy. The lumpectomy found DCIS (multifocal and lots of it).
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Farmerlucy and ballet12...Thank you for your feedback and sharing ....some good points to keep in mind. I really appreciate you reading my post.
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farmerlucy... I am just curious...do you mind sharing if you have family history of BC or ovarian and what the risk % the genetic counselor gave you?
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My mother had it at 27, her sister passed from it in her early 40's. Their paternal Gma passed at 36 but I could not find a cause of death. Genetic counselor said 50% risk.
I am currently waiting for the results of a 19 gene ovarian and Breast cancer panel from Color Genomics. My docs thinks there is most likely a family mutation somewhere.
Deleted post below was a duplicate.
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No ovarian that we know of but no woman survived beyond their 40s in several generations on my gpa's side. Mom had it at 27, her sister passed from it in her early 40's. Their paternal gma passed at 36, but it was 1918 and no cause of death could be found. There is also male BC on my dad side but prob washed out of gene pool. GC said 50% risk. I'm waiting for results from Color Genomics to see if we can find a mutation.
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Farmerlucy... thanks for your reply...that is helpful. I am figuring mine is around that percentage as well.
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I have been off the boards for a while, but thought I would give an update. After 2.5 years of biopsies and every 6 month mams, mri's and ultrasounds, 2 tries with tamoxifen, extremely dense breasts and multi focal ALH and ADH, I had enough. In January 2015 I had a PBMX and can't even begin to tell you the relief that I feel now.
I was lucky, after the PBMX, only ADH, ALH and FEA were found, nothing further but it was wide spread bilateral. No cancer. However, I know I did the right thing. My BS said that I had the densest breasts she has seen in 20 plus years of performing mastectomies. She told me that my breasts belong in one place, and that is in a bucket in the operating room. Harsh, yes, but true.
It took me 2 years to make the decision to have the PBMX, but I am glad I did. I have had a few small complications with my expanders, but am scheduled for my exchange surgery Sept 9th. I can finally see the light at the end of this tunnel!!!!!!!
It is so personal, best of luck to you in making the right decision for you and your body.
Cin
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