PBMX for ALH or ADH?
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Prigs- sooo glad you are doing well. I too have already had bilateral mastectomies for ALH. Very interesting they found more ALH. I was very happy with my surgeons and the whole process-I did have expanders,but was very small to begin with. I did not want to take Tamoxifen, that's why I chose mastectomies. From your experience I'm glad I didn't go on it. Were you able to have nipple sparing? There are very few ladies that have chosen mastectomies for ALH or ADH - thanks for sharing your story!!!!!
Hugs, Valerie0 -
I am so happy to hear you are doing well and are also happy with your decision to have PBMX. As Valerie said, there seem to be only a few ladies who are offered this option and thus, few who have this procedure.
My PBMX was six months ago today! I had revision surgery on 14 September to correct a few imperfections. It is too soon to tell how successful the revision surgery was but the PS thinks everything went very well.
I had to have the right implant removed and replaced but this seems to be no major thing if this should be necessary.
Let us know how you are coming along!
Sandy
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Thank you very much for posting this topic! I'm 36 yrs. old. I had a papilloma & ductal excision done this past March. The results showed that my papilloma was normal, but ADH was found in the tissue. My doctor sent me to an oncologist, we then discussed placing me on Tamoxifen. I explained that I have history of blood clots & she then told me that Tamoxifen was not an option. I actually ended up in the hospital on the same day as I went to the oncologist with a blood clot in my lung!! Good thing I didn't start the Tamoxifen! Anyway, fast forward 5 months & I'm now due for my first follow up mammogram since having my surgery & finding the ADH. My doctor has explained that there's nothing that we can do at this point in time except for watch & wait. My husband is military & I see the doctors here at our military hospital. My oncologist is now actually my hematologist as well. I recently learned that I have a blood clotting disease as well. Anyway... I'm VERY worried about this mammogram coming up on the 3rd of Oct. I don't like this watch and wait method. Thoughts please?
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Watching and waiting are so very difficult! There is nothing that compares to waiting for the next test to see if something is discovered "this time." I was not a candidate for tamoxifen either so I understand how disconcerting this can be for this leaves you with few other choices to consider.
When I could personally wait no longer, I decided on the PBMX for it was the right decision for me for I wanted to get on with my life without worrying about the day breast cancer would be discovered. This is a very personal decision for each of us and there is no one right answer for everyone. It would be so much easier if there were one right answer for all, I think.
Weigh your options. Get a second opinion or a third or fourth and try to find some personal peace with what your docs advise. My thoughts and prayers are with you. I am happy to answer any questions you may have if you are considering the PBMX.
Sandy
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mcmommy - I felt like I was "waiting" to get cancer - after every mammo, biopsy I kept wondering is this the time? My mom had breast cancer so I have been having mommograms for 20 years since age 30. When my diagnosis came back ALH - which my doctor said was precancerous I felt it was the time to have PBMX. I am such a worrier that I couldn't stand it anymore. In discussing it with my surgeon I said - what would you do if it were you. After explaining that with close monitoring if bc showed up it would be caught very early - so she felt that I would be fine either way - she said that she is a worrier (I didn't tell her that I was) and that she, for herself would opt for PBMX. She did caution that it is not for everyone - some ladies are very attached to their breasts - I was not. So I had PBMX in May of 2010 - I was able to have nipple sparing - I am still suppossed to do self exams because there is still a small amount of breast tissue, but my risk of getting bc went from 40% to less than 5% - I have been very happy with the whole process. Good luck and I too would be happy to answer any questions.
Sandy - hope your revisions went as planned!!
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Hi all, I am up really late posting this. I can't seem to sleep with this trouble on my mind. I have sent a few pm's to a few people and I hope you don't mind. I have had so much trouble with my breasts in the past few years. I have a biopsy a few years ago which ended up being a surgical one because they couldn't find the spot well enough on the mammo to do a wire guided bx because of how dense my breasts are. The surgeon even told me he had never seen such dense breasts. I never realized how significant that was until now after reading all the recent research. I can't remember what the results showedd but they were benign, but were also something that could turn to cancer some time. I know it is ignorance but at the time I was so happy to hear the words "benign" that I didn't hear much after that. I have been on the six month watch and wait mammo program for years. I also get called back to do more and more and more pictures. I know now that this is probably because of the density. I am 47, and have a mom who died of BC at 49, a sister who died of breast cancer at 51 and I have an uncle on my fathers side who has it now. I don't even know if that counts? When they tried to put the wire in my breast before the biopsy they punctued my lung. (micro calcs were almost on chest wall) I feel guilty becasue I know women have been through so much more then I have but I feel like I am already tired of this. I feel like a ticking time bomb waiting to go off and I can't relax. I really would like a BPMX at this point. The surgeon who did my bx was a general one. I never saw a breast one. What would my next steps be? I did that risk assessment and I have like a 47% risk which seems too high for me. Please help me ladies and lead me in the right direction or atleast some direction where I can get things moving for this. I am not attached to my boobs and I really don't want to go through this anymore. Thanks ladies
Also wanted to add, I am going to get my biopsy result report and all the mammos which show the density issues and make a file . 0 -
mooseygoosey,
Sorry you are going through this. First get a copy of your report. If it is something precancerous then insurance should pay for you to have PBMX - if you decide upon that. It was the best choice for me - I am such a worrier and couldn't stand it anymore. I was 49 when I had PBMX May of 2010. You could also be tested to see if you are BRCA positive - genetic counseling would help also. Even with a negative BRCA test my risk was 40% of getting breast cancer at some point - not something I chose to worry about everyday. Let us know what you pathology report says and I'd be happy to answer any questions you might have. Hang in there - we are here for you!!
Hugs, Valerie
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mooseygoosey,
Hang in there. I echo the other guys on this site. Definitely find a good breast surgeon, (preferrably female). I was told with dense breast tissue that an MRI was indicated more often than not rather than going through the mutilple picture taking with a diagnostic mammogram. I too felt like a ticking time bomb, and didn't even have the family history that you had. Let me know if I can help in any way.
Pat
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Mooseygoosey,
I agree with everyone who has posted a reply to you! I think you do need to see a breast surgeon, get a copy of all your medical records, get all the family history details you possibly can compile, make your pitch for getting an MRI, and always remember to be your own best advocate!
I chose a PBMX for like you, I had such a high risk of developing BC, it was the best possible decision for me. Everyone is different and must make their own decision but remember we are here to support you no matter what you decide is best for you!
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Hi Mooseygoosey,
After my diagnosis of ALH, I was told to "watch and wait" and I felt like I was just waiting for the shoe to drop. I had a paternal aunt and cousin that both died in their 40's from BC. I couldn't live from test to test every 6 months. I knew that the stress for a month before, plus waiting for the results after would be unhealthy in itself. I had pbmx and diep flap surgery last December. Still have some reconstruction left, but when that is through, nothing more to do. No replacing implants, no mammograms...The peace of mind has been "priceless".
Best of luck with your decision, I know how difficult it is. Hugs
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zogo - thanks for posting. As I have said before there are not too many of us that have had PBMX for ALH. I could not stand the stress either. So glad you are happy with your decision - just to have peace of mind is wonderful!!
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Hi! Thank you all so very much for your responses! I'm so very worried about this watch & wait deal.
On Monday, I'm due to have my first mammogram since my excisional biopsy & since my diagnosis of ADH. I do have a question that has been bugging me.... When I had my papilloma removed, they took out a very large section of my breast, including a milk duct. On the day of my surgery, my doctor told my family that she thought that everything looked "good". However, when I got my pathology results back, she said that she was very shocked that they found ADH. Nothing more has been done since my diagnosis. Is this something that they would do more surgery to remove the ADH?!?!? I've been concerned about this. Thanks again for all the responses! You guys are amazing! 
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mcmommy,
I just hate it when docs come out of surgery and tell families "everything looks great!" when they have no final pathology report to back up their statement. I was fortunate in two ways. The first was that after my surgery, my surgeon told my husband, "Sandy did well during the surgery and had no unexpected problems. We will have a final pathology report in a few days and then, I will know more. I am not a pathologist and am sorry I can tell you nothing more right now." I was again fortunate when that report came and revealed nothing unexpected.
I cannot imagine how furious I would have been to have learned later (when the path report was actually back) that things were not what we had been told. Waiting was difficult but is better than guessing.
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mcmommy---did it mention any clear margins in your pathology report? They would only go back in for a re-excision if you didn't have clear margins. If the ADH was removed and the margins were clear, they generally recommend yearly mammos for ADH; sometimes with the addition of tamoxifen if you have other significant risk factors, such as family history of bc.
anne
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awb,
Thanks for your response! There's nothing in the pathology report about margins at all. That's why I'm a bit worried. Nothing more has been done, except they offered me Tamoxifen, (which I can't take because of a blood disease) & they mentioned every 6 month mammograms. I actually just went in 2 weeks ago for my follow up mammogram. I have two new lumps that are not showing up on mammogram or ultrasound. The radiologist felt one of the lumps, but he couldn't feel the other. He said to just "watch" them. I'm so worried about the whole situation. My hubby is military and I have to use the base hospital for my care. What are your thoughts? What should I do about the margins not being mentioned in the pathology report?? Thanks so much for your help!!
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mcmommy-----if they didn't mention anything found in the margins, I think it's safe to assume they were clear. If anything were found in the margins, they generally would state that in the pathology report. The lumps are most likely post-op scar tissue . since you are can't take tamoxifen, just be sure to be vigilant with your monthly self exams, mammos, and clinical breast exams.
anne
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Hello Girls - I just wanted to comment on this topic. Briefly, with very low risk factors, "all-clear" mammos for ten years with regular every 2 year screening mammos, I was undergoing diagnosis for suspicious calcs as of the end of June this year.... fast forward - after multiple diagnostic procedures, ADH was diagnosed on a CNB, thus leading to the excisional biopsy and a preliminary path result of DCIS and LCIS. I also have another condition found on US of fibroadenoma (suspicious at my age 51), so they want to monitor that every 6 months too. So.... with part two of path results still to come and a breast MRI next month, I find myself looking very seriously at a PBMX and the different types of reconstruction. Part two includes results of margins and I have been warned that they may have to go back in and remove more tissue. I asked my surgeon if that was the case, will this be the time to discuss a double mastectomy and he replied "Yes".
I was thinking I didn't want to live with the high risk of BC with the ADH, but now I have surpassed this point. I am small breasted and athletic and couldn't bare the thought of another excisional biopsy every time a new suspicious area is seen on my 6 month check ups. In other words, with my worrying type personality, I was already thinking about radical treatment even before the new diagnosis came in.
I am not keen on radiation or hormone therapy for the risk factors. My thinking is, with the way things have turned out for me I would rather skip to page 4 and get the MX going - let's just cut out further biopsies and the stress from all the worry, get the recon now while the breasts are mainly in tact and hopefully a good cosmetic result can be achieved without breasts that have multiple war wounds. I still have lumps, bumps and swelling from the excisional Sept. 22 and a good visible 2 inch scar which is due to the angle the wire was placed in prior to surgery.
Sorry to ramble on, but I want to get off this merry go round and put myself in a better place. I realize that some women would still go for breast conserving measures, but I don't have a lot to spare and I would love to hear from any of you that went the more radical route and if you PM me, I would like to hear about the pros and cons of the surgery and reconstruction, if you chose it.
If the cost of not getting BC in the future is my breasts being removed at 51, I feel it's a better quality of life and I want to watch my boys grow up and one day see my grandchildren. I have better things to do that sit and wait until BC comes calling.
I appreciate any and all comments. Thanks.
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Hi Chickenpants, Mooseygoosey & others,
It was just 15 months ago that I had a risk reducing bilateral NSM due to a significant family history, dense breasts, and multiple biopises { 2 of them were invasive surgical procedures}. I had fabulous care, outstanding surgeons, no complications and my results are amazing. My breasts look far better than the originals with hidden incisions. Took me five long years to make my decision after multiple consults with several top leading surgical teams in NYC, doing my homework and following the research. Surgery is certainly not for everyone & comes with risks. However, it was, by far, the best choice for myself. I could no longer withstand the brutal surveillance and "watchful waiting" from a personal perspective. Words simply cannot describe the immeasurable relief.
Please know you're never alone & there are NO right / wrong answers, only u can decide!!! Do not be swayed by others , but do listen to their experiences and most of all, follow your gut instinct. If you're contemplating surgery or struggling with decisions & wish to chat about your fears or anything related to surgery, I am here to share my experiences anywhere anytime:)) Making decisions is truly agonizing & absolutely far worse than the surgery itself, i feel. You will know when / if the time is ever right, trust me. Take your time and gather opinions to get whatever you want, my very best advice. Best wishes to everyone & know we're here to hold your hand, dry your tears, calm your fears & provide the support, if needed.
Warm Regards,
Lisa
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ChickenPants - Very well put - I felt the same way you did and with my diagnosis in May 2010 for ALH had PBMX. I was 49 at the time, very small breasted and so decided to go a bit bigger and have been so happy with the results. There are some negatives - loss of feeling, pec muscles feel kind of weird sometimes, am not suppossed to do push-ups, bench press or flies - but it was the right choice for me. There is a picture forum (have you looked there yet?) if not let me know I can tell you who to get in touch with to gain access. You can then check out some of us that have had nipple sparing - which I would hope you would be a canidate for. I too would be happy to discuss anything with you - here or on the phone. I didn't know this forum existed until right before my surgery - it would have been helpful.
Lisa - Well said - watchful waiting to get something more serious was not for me either!!
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Hi Ladies,
Brief history. My mother died at 38, my grandmother at 47, and my mothers sister at 42....all from Breast cancer. I am 49
I have ALH, ADH and LCIS. Several biopsies, 3 lumpectomies. And I'm done. I have finally decided to have a PBM. I met with a plastic surgeon this week and I loved him! I will hopefully have my surgery by December.
I think this is a very personal decision. I know some people think I'm crazy for doing this when I don't actually have cancer. But, I was 11 years old when I watched my mother go through radiation and chemo. She showed me what she looked like after mastectomy... not to scare me, but to make me promise that I would do whatever I could to not go through what she went through.
As Lisa said, you will know when the time is right....and the time is right for me. It took a while for me to come to this decision, but now that I have, it feels great!
Take Care,
Valarie
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Kudos to u Valarie! You are not crazy and those who choose to believe that are ignorant and simply un-informed. BTW, has anyone been tested for the BRCA genes in your family? Best wishes to U in December!
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Thanks LISAMG!
Actually, I am going to be going for genetic counceling on the 24th of this month. Unfortunately, my father and brother both passed away from prostate cancer.;...so, another reason to get this done.
Take care,
Valarie
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Valerie,
I had a PBMX March 18. It took me a long time to say, "Enongh! Enough! No more mammies, no more MRI'S, no more US's, no more. I want to be rid of this terrible worry I have of waiting to be diagnosed with breast cancer."
It was a great decision for me! Everyone is different and that makes the decisions we all make different as well. What is good for one if not always the right answer for another. I am so happy you have reached the decision that is the right one for you!
Everyone on this thread is here to support you in your decision. We are here for the good times as well as those that are not what we had hoped. We are here if you are afraid or shouting with joy. Always remember, we are indeed here and you are never walking this road alone. We are along for the journey and shall bring bread and wine.
Sandy
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Hi, I'm brandnew here, had a PBMX on Wednesday. I'm actually feeling great, the itching is worst, and for pain I only take Ibuprofen. Walk on my treadmill a few times/day. Can't wait to get out of the compression bandages tomorrow.
I had blood from my left nipple in June, then 3 weeks later, milk duct removed, ADH found. After consulting with my family doc, OB/GYN and breast surgeon ( female, great person!), I came to the decision that I wanted the PBMX. Can't take Tamoxi, because I have to be on nature-identical hormone therapy, because I have hot flashes from hell, every 20 minutes 24/7, with accompanying heart skips. Really awful. Also have dense "busy" breasts, that I can't even check for lumps because they're lumpy. Well, WERE lumpy.
for me, it was a no-brainer that I could not live in a cycle of anxiety. I have worked in the medical profession, and would not want to have chemo or radiation if there's an alternative, if the shoe dropped.
I have expanders, the post-op pain was very manageable and I'm really looking forward to a fast recovery. If I peak under the wraps, I already have a little cleavage from the swelling I guess, and my plastic surgeon said he filled in 75 mil already. Very happy!
this is not for everyone, I know, but I'm feeling very good. Pathology came back on Friday, and I had numerous ADH areas in both breasts.
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Sandy,
Thank you for your kind words.... they mean a lot to me right now!
Kittycan... it's great to hear you are doing so well!
Take Care,
Valarie
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thank you for your kind wishes. I got 2 drains out today, 2 still in. I am wearing a supportive sportsbra and my boobs look great. I know there's still swelling, but it's definitely a full A cup. Even without nipples they do not look like Frankenboobs. My husband thinks they're great and I shouldn't get them much bigger. The plastic surgeon was very satisfied with the results and said he could still make minor corrections when the final implants go in later.
He also got the pathology results, and told me, as ADH should be removed, my boobs would have looked like swiss cheese, so this was definitely the best solution for me. I'm glad I did it, and even now, only 5 days afyer surgery, I am super happy with the results.
Because I had no cancer, this was just a bilateral simple mastectomy and I have full feeling in my breasts, and they feel good. They took out about 90% of tissue and all of the milk ducts.
good luck to you all!
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Hi,
I had my PBMX on May 26, 2011. It was an easy decision for me. I have alloderm smooth 600cc sillicone implants. This PBMX was completed in one surgery with implants. There were a lot of doctor visits but it was mostly the PS just looking and checking my post surgery stuff. It has been 5 months since my PBMX and they feel comfortable and soft and very breasty, when I touch them they feel smooth, I no longer touch them and feel something and wonder what is that weird lump? Did I feel that last month? I have my nipples too-- the incision around my nipple is barely visible and the incision on the bottom of my breast is very light. My nipples still shrivel when I get cold! I am BRACA negative but strong family history.0 -
thatsvanity -
so glad you are doing well and are pleased with the results. I started this thread as there are not many ladies that have hadelective PBMX for ALH or ADH. I had ALH also. I had my PBMX May of 2010 - so I am a year ahead of you - although you look so young - so I'm ahead of you in age
. Still happy with my decision. So nice to not have to worry about weird lumps and tests etc!! I was BRAC negative also, with strong family history. Glad you joined us here.Hugs, Valerie
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Last year, I had an excision for adh, fully removed. This year, I had a umx with no recon 10/7/11 for dcis on same breast. I wonder now if I should have considered asking for a pmx on my remaining breast. If adh shows in that one, I probably will. MO wants me to take tamoxifen, but I don't want to. Think I would prefer the pmx. On the other hand, one woman on these boards said that she was grateful that she'd had a umx 30 years earlier...After those 30 years, she got bc in remaining breast. She felt that she'd gotten 30 years of enjoyment from that breast and was glad she kept it.
These are such difficult and personal decisions. There is no right way to do this. You just make your choices...and live with them...sigh...
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Hi Valerie,
Thank you for your words of encouragement! My avatar picture is of my sister, Kara, she died of metastic breast cancer on Feb. 14, 2011, her picture was taken one year prior to her death. She was about 40 inher picture and she died barely at age 42. I left that part of my story off my post, but of course losing her to this awful disease was a great part of my decision to have the PBMX. I also have an uncle who died of breast cancer. I think there are other breast cancer genes that have not been identified like the BRACA gene. Thanks again I do not regret my decision at all. I couldn't wait to have my breasts removed, and they were already mishapen from a biopsy so it was for health and aesthtic value.
Amy
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