PBMX for ALH or ADH?
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cinvee,
Thanks so much for sharing. Im glad it worked out well for you
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I underwent a PBMX with DIEP Flap reconstruction 7 weeks ago. I was size 34A, with very dense, lumpy breasts. I had spent many anxious days over the past 15 years with negative mammogram call backs, ultrasounds, biopsies, etc. On St Patrick's Day I was diagnosed by stereotactic biopsy with ADH and FEA after multiple areas of calcifications were found in my right breast. When I pushed for an MRI, I learned the ADH lesion was twice the size they thought it was; the mammogram didn't have the range of the MRI, and had missed half of it near my chest wall. After learning my recommended treatment was a significant lumpectomy followed by 5 years of Tamoxifen, I hiked over to Beth Israel and consulted surgeons for the mastectomies and DIEP. In my mind, the past 15 years felt like I was playing for the farm league, but the ADH diagnosis, with very dense breasts, felt like I'd been called up to the majors now. My breast surgeon agreed this was a smart decision, given my reluctance to introduce scar tissue from future lumpectomies or biopsies to the complicated dense breasts. I also didnt want Tamoxifen. So, I ate a little more over the spring, and post nipple-sparing, skin sparing mastectomies with immediate DIEP reconstruction, I have new 34A breasts made from cake, cookies, and ice cream! Thankfully, no cancer was found when the tissues were sent to pathology. I feel like this breast journey is now done for me. No more being a lab rat, and I don't fear them anymore! I took it as a sign that my unlucky (yet very lucky) diagnosis occurred on St Patrick's Day. It is a very personal decision to decide next steps when you get this diagnosis. I'm just so grateful I found doctors who respected and agreed with my choice, and I'm thrilled with the outcome.
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Just wondering if anyone has recently had a pbmx. I was diagnosed in 2013 with ALH and in December of 2014 had a oncoplastic reduction. I see my surgeon tomorrow after a mammo and ultrasound and was going to speak to him about my options. i am so tired of the worry and I don't want to take tamoxifen . Just wondering for those of you who decided to have the pbmx with a pre cancerous diagnosis, how you are doing now and have you encountered any problems. I have very dense breasts and two maternal Aunts that developed breast cancer in their 70's. I would appreciate any information.
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it's definitely a consideration for me with ADH but it's a really tough decision. I'm under surveillance now and I take Evista but neither gives me a lot of piece of mind. I have many other serious health considerations which make this decision even harder for me but I'm not ruling it out entirely . Good luck with your decision
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bilateral mastectomies are not medically necessary for either ADH or ALH: they are not medically necessary even for LCIS, which is a step further along the bc spectrum with a great deal more risk. (even with the combined elevated risk from LCIS and family history of ILC (my mom), all 3 oncologists I've had, breast surgeon, and 2 radiologists agree with that recommendation). It really becomes a personal choice of how much risk you are willing to live with.
anne
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Had a 3d mammogram and very detailed ultrasound yesterday at the breast center and then saw my breast surgeon right after. He told me all was clear just fat necrosis from the surgery i had , in which he removed the focus of ALH he removed was gone and would not have to be dealt with again, however he could not guarantee that there was not another focus of ALH somewhere else. He was very confident that I could go to screenings once a year, having both a 3D mamo and ultrasound. He is at Moffatt cancer center and very highly respected, but as happy as I was to hear 1 year, i did ask him if he was sure? He said very sure and if it were to reappear which may happen one day , it would be caught very early before any type of invasive process would be detected. Soooo, I do respect him immensely and he is currently very involved in breast cancer research, Im contemplating waiting the year as he suggested, hope i don't regret my decision, its so hard to know what to do.
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I was diagnosed with LCIS and am 7 weeks out from my PBMX. My family history is very extensive (mom, grandma, great aunt all had breast cancer - that's my mom's side; dad had pancreatic and bladder, two of his sisters BC, two other sisters ovarian, two cousins on that side have breast cancer, two great aunts had unspecified cancers (so long ago, no one remembers just what kind). The surgeon second opinion said that a PBMX would bring my risk (calculated at 67% down to just about 0). She did not recommend a PBMX because they prefer watching and catching the cancer as it comes. I didn't want that. I decided that wanted to go aggressive now. I didn't want cancer I don't want to watch for it. I don't want to go through treatment. I don't want to wait for it to come back. Every woman diagnosed with breast cancer in my family had either metastasis or a new primary cancer within 10 years. I also have young children. That was my history, the kids are my future. So I made my decision. I'm very relieved now. But everyone is different and it's definitely a personal choice
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In my case, my MO and my RO both feel that the Arimidex/Anastrazole that I am taking will prevent my ALH from becoming an invasive carcinoma. I had a biopsy that showed ALH in November 2015 after my bc dx and tx. (Previously, I was dx with ALH, PASH, and FEA, as well as pleomorphic ILC, bi-focal pleomorphic LCIS, and invasive tubular carcinoma.) My RO at M.D. Anderson Cancer Center told me that my breasts among the most dense that he has ever treated and that they are very lumpy. I have had numerous core needle biopsies and excisional biopsies prior to my bc tx and then I have had 2 biopsies since my tx. The decision to have a bmx is a very personal decision. I wish everyone well. (I had a double lx and a breast reduction/lift as my surgery.) Good luck and health to all along with no stress or worry.
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I had a single mastectomy last July. I felt another lump on my mastectomy side this past May. I got the results today but didn't get a lot of time to chat with my dr. She had to leave early today so I came in 2 hours earlier and could tell she was rushing. She normally doesn't
I found out I have atypical cells. She wants to do an mri and then surgery to remove it.
I'll ask her questions after my.mri, but I know atypical cells give you a higher chance of breast cancer. How does that work if you've already had it? I'm also on tamoxifen, I work out daily, am healthy, don't smoke or drink, so I don't know what else I can do in terms of prevention. There's no family history, I was 34 when I was first diagnosed.
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I would get you vitamin D levels checked if you have not done so already. My surgeon wanted mine to be at least 50 ng/ml. Normal range is 40-60 and most people are vitamin D deficient. You can ask your Dr to check your levels with a simple blood test. When they found my Atypia, my level was at 15 ng/ml and is now at 57 ng/ml. It takes a while to bring your levels up, i have mine checked every 6 months.
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I've had low vitamin d. Lowest was 7, then I got it up to 20. My old and new oncologist don't think it's important which is weird. My pcp thinks it's important.
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I can just tell you that my surgeon and gynocologist are on the same page as far as vitamin D goes. I know 3 people with breast cancer and one with a high risk lesion and they all have had vitamin D levels below 20 ng/ml. Look up Carole Baggarly and Dr. Cedric Garland and watch some of their video presentations, they are very interesting to say the least! Lets just say it certainly can't hurt! I am a believer in the vitamin D and cancer connection and feel like if I can do anything to possibly help my situation from getting worse, I will.
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irenebru62 I made an appointment with my pcp so I can get bloodwork done. However, now that I have atypical cells my oncologist might run bloodwork. I believe there's a connection with Vitamin D and cancer. My surgeon does too, but she's not my oncologist. I'll take a look at those videos. thanks!
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Dear Unbreakable: I am sorry that you have atypical cells. I would spend time with your doctor after your MRI to have your questions answered to your satisfaction. Good luck.
I was diagnosed with ALH one year after I finished my BC tx. My MO and my RO both said that the Arimidex/Anastrazole that I am taking will prevent the ALH from becoming invasive. They told me not to worry. I have a mammo and sono alternating with an MRI every 6 months so I am closely watched. I hope that you are fine and that no new bc will occur. BTW, I take vitamin D3 every day. I wish you the best.
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Great to hear! Let me know what you think about the videos they are interesting to say the least. Curious to know what your vitamin D level is now. Feel free to private message me any time....
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Low Vit. D levels have been shown to correspond to higher risk of breast and colon cancer. So by taking more Vit D , we can decrease our risk of those 2 cancers, along with the benefit to our bones, and it helps to decrease the risk of MS , as well. So it's a good idea, all around. My OB/GYN said he recommends between 1800-2000 a day.
anne
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awb
My PCP is big on Vitamin D, and my surgeon, just not my two oncologists. I still take 5,000 IUs a day. I'm getting checked out at the end of the month from my PCP. I think there's a correlation, so I still take it. I just need to see if I've been able to raise my Vitamin D levels.
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I have been told same as Anne from three docs for me witnADH
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I was diagnosed with ADH (5cm) in my left breast. I also have 2 first degree relatives with breast cancer , mom and sister. I have other risk factors that make me high risk. I am BRCA 1&2 negative. Because of the size of the ADH, I was going to lose my left breast to the precancerous mass. After 3 core needle biopsies, I chose a bilateral mastectomy. I had my surgery on 6/17. I have TEs for reconstruction.
I hated the smothering observation by my MD. Between the MRI and Mammogram scheduling and waiting anxiously for the results, I would lose 3 months of my life due to worry. Every suspicious shadow required a biopsy and additional worry.
The BMX and TEs are no picnic, but worth it for my peace of mind. I have no regrets.
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I absolutely understand how you feel. The waiting is the worst. My Dr. has now put my appointments out a year, a little unnerveing but I am being vigilant and if I start feeling that awful feeling of pending doom I will do something about it. You are very courageous and it must be a very good feeling not to have to worry like that anymore.
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The worrying is the worst. I am glad that you will no longer have to worry. Congratulations.
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That's a very brave decision. Wishing you well and huge piece of mind!!
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thanks ladies. I don't feel brave at all. The women who have cancer and are going through the treatments are brave. I just couldn't face that kind of diagnosis. I respect every woman and the choices they make regarding their breast health. My breasts were ticking time bombs. It was only a matter of time for me. I'm glad they are gone. I don't miss them at all.
Bottom line, no judgement of anyone for the decision they make. I just hope it brings them peace and good health.
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I totally agree.
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well we are all different in approaching these hard questions and decisions. Me living with type 1 Diabetes and 24/7 insulin since age 60 and now a DX of ADH ,I consider myself very brave😉. That's just how I roll and it helps get me through the day. So I applaud you and your decision because I know how hard it can be to make decisions and manage ones own care. Cancer and type 1 will kill me for sure. I'm doing the best I can with the truly crappy hand I've been dealt. It's brave in my opinion
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Dear DDw: I think that you are brave too. However, nothing has to kill you for many, many years. Your ADH may never become malignant (hopefully). Hopefully, your diabetes is under control. I am sending you hugs and prayers for a very long life.0 -
it's always a good idea to get several opinions. I have a family history and take care of patents as well! It's always important to respect people's backgrounds and individual anxiety levels!
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I only made my decision based on what is best for me. I totally respect everyone's right to make their own decisions. Second opinions are always a good idea. I just wanted to get off the mammography merry-go-round. Once they found something, I became a prisoner that required close observation and increased worry for me. Each year the steaks got higher. The only way to escape it was to get cancer or get rid of the breasts. I chose the latter. My extensive ADH diagnosis had already determined that I was going to lose my left breast, so I opted to remove both to make reconstruction more symmetrical.
I think women need to know that a mastectomy is not a simple surgery. There can be complications. I had my share. There is a lot of pain involved too. There is also a psychological component that shouldn't be overlooked either. If I had the choice to do it all over, I'd make the same decision. There is nothing like knowing that I am off that merry-go-round for good.
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thank you for this post
I am having a prophalactic bilateral nipple sparing mastectomy due to third sister now has breast cancer.
I have been horrified by not finding a story
Similar with positive results.
My surgery is November 22
Janet
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Good luck. I hope that your surgery went well. I am sending you hugs.
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