PBMX for ALH or ADH?
Comments
-
lightening - soooo glad you are feeling better each day!! And even better that you are happy with you decision - good for you!!!!!!
0 -
Hey Valerie, just wanted to say I love, love , love the support you offer in this area. There are so many who says it's "overkill" but if you KNOW it's the right thing for you then it's the right thing!!!!! It was just too hard for me to sit around and wait for something worse to develop. As you can see the final path bumped me up to DCIS....oh well, glad I insisted :-). Thank you!!!
CC0 -
I had a PBMX April 7, 2011 for family history (known BRCA1 and BRCA2 mutations) and with significant changes on MRI. Pathology returned ALH and columnar hyperplasia with atypia. I watched the changes forming over two year's time on MRI and Mammograms and decided it was time to change the path that most of my family members before me had taken. It wasn't until after the PBMX that I got the pathological findings said above. My surgeon said this is basically a step below ductal carcinoma, which is what my family seems to develop. I'm in reconstruction, really, really, really happy with my decision and feel that I have done all that I can do to be as healthy as I can be for my children. At the end of the day...I took my chances from 69% before the age of 40 to less than 4% lifetime. That's a WIN. :-) Best of luck to you.
0 -
AJ251 - I bet you are so relieved!!! I was relieved and my risk went from 40% lifetime risk to less than 4%. I too had ALH, but knew that going in - which is why I had PBMX and strong family history, negative for gene. It has been a little over a year and I have been very pleased with everything. Were you able to have nipple sparing?
Hugs, Valerie
0 -
Kris,
I am now a bit over 3 months post PBMX with direct to implants. I was able to have NSM also. I have worried about many things in the past three months after my surgery but have not worried one time about developing BC! That is very significant to me for it seems I worried about it every day prior to my surgery.
I had one thing after another for years and was told my numerous BS that it wasn't a matter of "if" I would develop BC but was a matter of "when" this would happen. I decided to be proactive about the matter and have the PBMX rather than wait around for BC.
I am happy to answer any questions you may have about the surgery. Please feel free to PM me is you are still searching for answers to questions!
Hugs, Sandy
0 -
Kris - how did you 6 month follow up go? Please let us know!!
0 -
Hi Everyone,
As you can see from my name that is why I am here. My Mom had BC (she has passed) My sister has BC (caught early) MX with diep flap. Our family gene is BRAC negative. I now had a biospy and have AH. Had that removed from left and the MRI shows my right having density. Long story short the BS gave me the option of Tamoxifin or PBMX. I was told I have a 60% chance. I am seeing the PS soon and know I need to figure out when to do this. I have a few questions if you guys dont mind. First of all I have no pain tolerance and all pain meds make me sick, so I am nervous about that. Also I know there is an option of Saline implants or silicone. From what I read, the silicone is softer, but Saline is safer. Did anyone choose Saline and are you happy with them. Honestly, also how bad is the pain ???
0 -
RiskGirl,
You will have some pain with a PBMX no matter where it is performed or who performs it. But you must look not at the pain you will have but the final outcome the surgery will give you. I hate pain as well and found the docs were able to control my pain with no problem. I have silicone implants and never really considered saline. If you have any additional questions please send me a PM.
Sandy
0 -
riskgirl... would you not consider the DIEP??
0 -
My sister had that. She loves the results. I do not have a high pain tolerance and the down time is much longer. I am struggling with taking time off from work already.
0 -
I had a bilateral prophylactic mastectomy with immediate recon using DIEP almost three weeks ago, on June 21st. I am thrilled with the results. I had a nipple sparing mastectomy. I woke up from surgery with a new set of boobs. I love them. I feel beautiful. They took the fat from my belly to make new breasts. It was a 12 hour surgery. Days 3 and 4 were long, painful days. The pain meds helped. Every day since then has been better. I can do some light housework. I take pain meds when I need it. I am taking 6 weeks off from work. I have a history of DCIS and LCIS , and ADH. My pathology from surgery shows that it was in both breasts. I believe I made the right choice for me with this surgery. It took me two years to make the choice. My boobs are warm and soft. I can feel my skin. My nipples survived. I would encourage everyone to get a second opinion. My first general surgeon just wanted to take it all off. I left and never went back. I found a breast surgeon who regularly does the NSM. I also found wonderful plastic surgeons who performed the DIEP.
0 -
Daisy4ever - so glad you are happy with you outcome!! I hope you are feeling better and better each day.
0 -
For anyone out there who is weighing the pros and cons of having this surgery, I just want to say that now that a couple of months have passed since my surgery, I am very happy with the results. I still have a couple of small issues, mostly with respect to the abdominal incision, but all in all, I am quite pleased with the PS's work. I can wear all my regular clothes and I look pretty much the same (except for the scars) in the mirror. Obviously, I have lost most of the sensation where the reconstruction took place and I am not crazy about the numbness at times, but I really do look pretty much like I did before and I am happy about that. And given how the path report came out, I definitely think I made the right decision. It wasn't an easy road, and I won't lie and say it was not painful at times, but well worth it. So if there are any of you out there who may be considering this, I hope this helps!
0 -
Hi to All,
Oh boy do I need you guys. HerA;le's my story, dx. with ADH right breast and ALH left breast Bilateral excisional biopsies completed Aug. 2010.. After second opinion and much sole searching, started on Tamoxifen. I did ask about PBMX and was told I was not appropriate,except for first oncologist I saw who said I appeared hysterical, so he would recommend PBMX, yikes. I ran, not walked out of his office. Any way back to my story. I did have a second opinion at the University of Chicago and decided to take the Tamoxifen. Saw my BS and oncologist every 6 months as ordered. Has a mammo 6 months after surgery and all was "clean". Then had another mammo last week, and lo and behold more microccalcifications in the right breast. Sterostastic Biosy now showing ALH in right breast. Spoke with my BS , she is going to present my case to her peers for opinions, since I have been on the Tamoxifen. Everyone's post have provided me with the ammunition and strength I need to make this decision. Please keep the support coming. I am going on vacation for 10 days and then will meet with my BS to discuss next steps. Will keep all posted. Thanks all to listening to me.
0 -
lightening... how long ago was your surgery?
0 -
pfitz1130 - have a fun trip and try not to worry. The BS is the one you want to discuss PBMX with - not the oncologist. With my diagnosis my BS totally supported my decision to have PBMX. Ask the surgeon if they do nipple sparing. With my diagnosis of ALH insurance covered it. Good luck and keep us updated.
Hugs, Valerie
0 -
I respectfully disagree about speaking with the oncologist... if you don't like the oncologist find another.... but the MO is a great all around resource, and understands CANCER... the Bs is a surgeon, but doesn't have the medicall training in CANCER... my 2 cents.
0 -
Betsy - I take that back about talking with the oncologist, his opinion should be taken into consideration. Speaking to all doctors involved is best. Plus it doesn't hurt to get different opinions. The oncologist I went to thought I should take Tamoxifen, not have PBMX. The surgeon said either way was good in her opinion. It was my choice. So I asked her what she would do if it were her (she said she would have PBMX because she is a worrier), I also worry about everything and wanted to PBMX so I guess that's why I said talk to the surgeon. If a lady really wants PBMX the surgeon is the one that does it - so they are the doctor that needs to approve it and clear it with insurance.
0 -
Val,my oncologist did want me on Tamoxifin but due to a past pulmonary embolus she decided that careful monitoring was best. I was a little startled to read my own post dated April14th as 2 weeks later I was given the diagnosis of ADH and IDC.I'm post BMX 3 months and am now on Arimidex.In hindsight, I wish I had been offered a mastectomy. At least then I wouldn't have the added worry about any spread, small as it may be, :-(
Barbara
0 -
DocBabs.. I am confused... You said you had a BMX and then say you wish is had been offered... did you have a bilat MX?
0 -
I wish someone had suggested that I have a BMX when I had "only" ALH and LCIS. I had a BMX this past May after a stereotactic biopsy for a new lesion showed that I now have/had not only the above but additionally ADH DCIS and IDC.
Barbara
0 -
Got it
0 -
Hi everyone.... please forgive me for butting in but I am new to this site (or any for that matter) and have never done this before. I was diagnosed with ADH yesterday but with a radial scar. I also have fibrocystic breast tissue, am 46 yrs. old, no children and an aunt that had breast cancer. My OBGYN who gave the biopsy results told me that I needed to see a surgeon for further biopsy. Everything I have read seems to state that all of these factors combined put me at high risk. Does anyone have any ideas on sites I should research so I can be better informed. I'm not sure what to do or think right now. Thanks
0 -
Janine... I would meet with the surgeon and then an oncologist who may suggest you take tamoxifen.
0 -
bdavis... I have an appointment with surgeon in a couple of weeks and my ob said they may want to put me on tamoxifen. She was somewhat vague, just told me to schedule with the surgeon for further biopsy because they wanted to make sure there wasn't a cancer lurking inside the radial scar. I'm a little nervous but will just wait to talk to the doc. Its nice to know there's a good support system out there. Thanks so much!
0 -
JanineD - ADH is atypical ductual hyperplasia - as I understand it means the cells in the ducts are a little weird and may growing a bit fast. The oncologist said my ALH (atypical lobular hyperplasia) was precancerous and wanted me to take Tamoxifen for 5 years. I did have a excisional biopsy (they took out about a golf ball size). Good luck and let us know if you have any questions -
Hugs, Valerie
0 -
Valerie... How long have you been on the Tamoxifen and have you had any adverse side effects? My husband is out of town for work the next two weeks and I don't want to worry him so I am trying to get as much info as possible. I know my surgeon will answer my questions but that is 2 1/2 weeks away. Thanks so much the responses, this really helps me feel less anxious. Janine
0 -
Hi Janine - I made the choice to not take Tamoxifen. I have a strong family history (mother, aung, cousin with breast cancer) and after consulting with a genetic counselor and my breast surgeon I decided to have prophylactic masectomies. I was sick with worrying every year (I've had previous biopsies). I started this thread because there aren't many ladies that have had masectomies when their diagnosis is ALH or ADH. My surgery was May of 2010 and I have been very happy with the whole process. My risk went from 40% chance of getting breast cancer to less that 5%.- Valerie
0 -
This topic interests me very much because about 5 years ago, I had a cyst drained and than removed that turned out to be ALH (atypical lobular hyperplasia). After runnign around for s o long with no family dr. only to find one, than have him leave again, find one, etc. It was almost impossible to get them to focus on all the information. they can't seem to find to lab results for the biopsy that showed ALH but I remember reading it myself.
Now i am sitting here in the same situation as 5 years ago, and feeling like the only one who is actually paying attention is the family Doctor I have now, who is very new to me and I am just hoping that he doesn't decide to skip town too before I finally have this seen to.
I woudl like to hear from others who have decisded upon breast removal or whatever else they decided on...
0 -
rushell....where are you located?? You really should be under the care of a breast surgeon, not a general doctor, in my opinion... Do you live in an area that has a surgeon?? I don't recognize your abbreviation of PE.
0
