PBMX for ALH or ADH?
Just wondering how many ladies out there decided to have prophylactic masectomies when your diagnosis was ALH or ADH? I know I can't be the only one....
Hugs to all, Valerie
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My breast surgeon outright refused to do prophylactic mastectomies for ADH. She said to me, "You are NOT a candidate for this surgery". No family history in my case, however.
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momoschki - so did they put you on Tamoxifen?
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LCIS & ALH...no mastectomy or drugs for me. Careful monitoring.
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LCIS, and some calcifications. Maternal grandmother (though I know that doesn't really "count"). My first BS wouldn't even consider it-wouldn't talk about it-kept saying "one step at a time". 6 years later,multiple biopsies and MRI's and ultrasounds later, I switched BS (long story and not all that important).
First appt., I brought this up as a possibility. She said, "I do about 15 a year, you're a good candidate" and we've gone from there. She also told me, she worked with my old BS, that he, just didn't believe in doing them, so that's why he wouldn't go there with me. I'm not saying one answer is better than the other, but I wish he had said that directly to me.
I also was worried about what insurance would cover-but she said compared to annual MRI's; multiple needle biopsies related to the density of my breast, hx. etc. the insurance company would be very happy to have me have a PBM and reconstrucition.
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If a woman with breast cancer, then the risk she has of a new breast cancer is higher than that which has never had cancer. The degree of this risk, each woman will be different because of differences in many factors that affect it. The risk of developing a new breast cancer is higher in women with additional risk factors. For example, if you have had in the past, breast cancer in your family as there were cases of breast cancer (in other words, on the face of family history), then the risk will increase each year has more than 1%. So if you are in the past suffered breast cancer and in addition you have other risk factors, the question is, how to reduce this risk becomes very important to you. You can seriously think about additional measures to prevent cancer, including lifestyle changes, taking certain medications, and surgery.
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Valerie, I had PBM for ADH with immediate DIEP recon. Very happy with my decision. I did not want to take Tamoxifen and (being a high anxiety person) I did not want to worry about it for the rest of my life. I would do the same thing all over again.
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It is outrageous any physician "decides" for a patient which path she must take. The very idea a woman cannot be trusted to make the choice that's right for her own body just is wrong.
Maybe the choice of paying inflated dollars for frequent screening and biopsies (both of which get it wrong at times) would fit his personal choice. Perhaps taking time out for watchful waiting would work for the good doctor. But to sentence another human being to an option not of her choosing is too bad. Way too bad.
Bottom line...any woman facing a breast diagnosis necessitating a lifetime of expensive and stressful watchful waiting should be able to opt out. You can find a Dr. who will allow a woman to consider her options and makes up her own mind.0 -
So good to see there are other ladies out there that had ALH or ADH - I had never heard of it until my diagnosis. Yes everyone should be allowed to make the choice that is right for them. I was one that did not want to risk the side effects of Tamoxifen, have MRIs every year (which for me would probably mean more biopsies - I had already had 5), plus couldn't stand the worry. So happy to have gotten (just by chance) a doctor that supported my decision (she said she was a worrier and that if it were her she would have PBMX, she would have supported me taking Tamoxifen as well) - and I love my plastic surgeon - just feel very lucky. I felt as though as I was a time bomb, just waiting to get cancer.... thanks for your replies - and keep in touch - I think we are a unique group as we don't have a "cancer" diagnosis.
Hugs, Valerie
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Valerie,
No, tamoxifen wasn't pushed in my case, especially since I have had some uterine issues in the recent past. My breast surgeon stated, "You have been treated for this"-- and now careful monitoring. May consider other drugs (Evista, for instance) once I am fully menopausal.
However, I did manage, after a great deal of work, to find a plastic surgeon at Cornell who believes in the efficacy of breast reduction for prophylactic reduction of risk in high risk women. This is still pretty cutting edge, but she has been doing it for 7 years with good results, and I figure Weill Cornell is no slouchy place, I trust her. There is no American research on this (she is currently doing her own longitudinal study), so there are few in the medical community who have heard of it or endorse it.
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I originally had a lumpectomy but I was too worried about reoccurance and I didn't want radiation at my age 33 so I had PBMX. It was the best decision I ever made. I feel so Freeee. Oh and you get a new set of ta ta's.
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I believe that tamoxifen in this case is required.. It helps to prevent cancer. The main thing is not self-medicate, and is under constant medical supervision while taking this medicine. Tamoxifen has many side effects and it is a hormonal drug.
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Anne - are you on Tamoxifen then? I too had dense breast tissue - after every mammo got the letter saying dense breasts - just was always afraid of what could be hiding in there. After my PBMX there were multiple benign lumps that didn't show up on any mammograms. I too hope more respond here. Hugs, Valerie
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Dear vmudrow. You should drink Tamoxifen. This remedy will prevent cancer.
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I was diagnosed with ADH in 1998 and Tamoxifen was never mentioned... just a wait and watch carefully approach... I was 36 yrs old... I was diligent and yet still ws diagnosed with BC last November... I have struggled with all of this... and in the end had a lumpectomy, but in further research realizing that my chemo nor my potential rads would do anything for the ADh that might have been left behind, plus very dense and now scarred breasts, I am 99% sure I will do a MX instead of rads... I am no longer willing to wait and watch to see if I get a new cancer
Do know, that a MX does not eliminate risk 100%.. You will still have some tissue left behind, so your risk drops from like 25% to 2%.
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Anne... I did the mammo once per year and saw the BS once a year and my gyno once per year... then after about 6 years, I didn't see the BS anymore (her call)... the for the past 5 years I have had US in addition to mammos... but it all didn't matter because I got cancer anyway and it never showed up on the mammogram... I found it. So if it had been deep, I never would have known. I have since had an MRI and I think its a better tool for monitoring and wish I had had MRIs yearly.
So now that I have gotten cancer, still have ADH, I am not inclined to wait and see if something else crops up, since I have done that and it didn't turn out well.
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I have no history either in my family, but most BC patients don't have a family history...
Insurance paying for an MRI can get tricky if the BS isn't on board to persuade them its necessary, but knowing what I know now, I would perhaps pay for the MRI out of pocket, at least once just to rest easier.
I guess until I have the MX, I haven't decided 100%, but I am very much leaning that way for many reasons, one of which is to avoid rads,, but the ADH also plays a part, as well as more peace of mind. Its a big big decision.
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Hi everyone -
bdavis, DocBabs, momoschki, Anne - I am suprised that your doctors haven't put you on Tamoxifen. Right after my diagnosis of ALH my surgeon sent me to an oncologist who almost insisted that I take it - but I then decided for PBMX, so now don't need to take it.
Anne - my surgeon told me that being diagnoised with ALH my insurance would pay for MRIs. They are expensive so hope your insurance will pay.
bdavis - hearing that you had ADH, was monitored and got cancer makes me think I did make the right choice my removing most of my risk - thanks for your story. I felt like I would have been just waiting to get cancer.
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Valerie, I had the same experience. My onc was really pressuring me to take the Tamox, but I just knew I couldn't.
It's just so unpredictable. We don't know which of us will or won't get a cancer dx. Is it worth the risk? Not for me. But for some it is, and I understand that too.
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It is so wonderful hearing the different perspectives and stories out here. Thanks for sharing, ladies! This site is just incredible, I learn so much.
My old BS (who I "fired") told me that ADH was like having an abnormal pap smear. What an idiot. I am probably going to start tamoxifen myself when hubby gets home from his deployment, it's just a bit much for me to take on right now with my crazy life. I am getting tired of my bad breast, though.....
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this is a great thread. I had ADH 14 years ago and had a lumpectomy. I also have very dense breast tissue. I did yearly mammo's and got cancer anyway. It never showed on my mammo's. Because of my dense breast tissue they had hard time getting my first biopsy so ended up having an MRI which showed the calcifications were not cancer but I had 1.6cm tumor way back in my breast that never showed on anything. I had another lumpectomy and rads. I have scar tissue from the first lump and now nerve damage from rads. My BS is now recommending that I have a MX which I will do as soon as I heal froms rads. But I have pretty much decided I am going to do a Double but will wait and make that decision after my appt with the PS. I was never offered Tamoxifen in the past but am now taking it since my BC diag.
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Valerie,
I just sent you a PM. I hope you are doing well and hope to hear from you soon!
Hugs
Sandy
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My breast surgeon suggested I give thought to having this done down the line. But this was after two surgeries in under two years for ADH. Also have a lesser amount of ALH. The reasoning was he can no longer do much reconstruction since I am small breasted and he had to take 2/3 of breast tissue out with the first surgery alone. He feels my insurance will cover it since it is getting equally as costly to have biopsy after biopsy, surgeries and even the six month survillance Mri and mammos. I am due this month for the Mri. I have not had a clean one since this all started two years ago. I am getting so anxious again and can't sleep. At this point I am praying it is just more ADH. If I need surgery again I'm going to seriously discuss having the PBMX. I can't falling apart every six months. Even though no family history I feel in my particular situation ladies would consider this option.
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I had a NS/PBMX March 18 and I am a little bit over 4 weeks post-op now. I had a countless list of things which were wrong depending on the time period and what test was being discussed. There seemed to be no end to it. I had surgery to remove a precancerous tumor, and later required another surgery to remove suspicious lymph nodes. I had biopsy after biopsy, mammy after mammy, and MRI after MRI until I could stand it no longer.
Finally, after meeting with the genetics doc and seeing my tree plotted, I realized I had dodged the cancer bullet for as long as I could. There were just too many people with BC and I had enough problems without the strong family history. I made my decision to have the PBMX then. I am still recovering but am so thrilled I no longer have to worry all that much about BC! I would do it all over again - just much sooner!
Hugs to All
Sandy
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pattimay - I also had very small breasts and after each biopsy they got a little smaller. Going through tests and the waiting and worrying really takes a toll. I have been very happy with my PBMX and the results. It has taken away the constant worry, my risk has dropped from 40% to less than 5%. Keep us posted on your MRI and what you decide. The surgery for me was not that bad - let me know if you have any questions - we are here for you. Hugs, Valerie
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Sandy105 - glad to hear you are doing well - sending you a PM.
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Sandy,
I am so happy to hear you are doing well and that you are happy with your decision. Valerie, I was dx last yr with ADH, but my story is a little different. I have a strong family history of bc with BRCA2 and very dense breast. Talk about a whammy. I went in for mammo on Mar 23 and they found another area of micro-calcification 3 cm behind nipple which was very hard to see. Different area than the 1st time. Went in for stereotactic biopsy and results came back as ADH again. They removed it all so know I will go back in Oct for MRI. Dr again has recommended Tamoxifen and at this time I just can't do it. Side effects with stroke and blood clots are my main concern. It is very emotional just trying to figure out what you can and can't live with. I am leaning for PMX and none of the medical team has poo'd that idea. I will go in for genetic testing soon and then from there, we will see. But for now I chose high risk monitoring. I feel that I have some time to get my ducks in a row. Hugs to all, Debbie
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Debbie,
I am so very sorry you have had bad reaults from another test and have required yet another biopsy. Sometimes, it just seems this is never going to end. I started shaking when it was time to start the round of tests again for I knew it would not be just one. It would be all of them.
You are correct in that you do have time to consider your options and make the decision that is right for you. The decision I made was right for me but is not the right decision for everyone. I had such a very strong history, the genetics doc said it wasn't a matter of "if" I developed BC, only a matter of "when" I did. So, with such a strong family history and my own personal history, my decision was probably easier than yours will be.
I am here if there are any questions you need to ask. You can send a PM if you like. Most of all, please know I am here to support you no matter what you decide is the right thing for you!
Hugs
Sandy
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Debbie - I second Sandy - you need to make the decision that is right for you. If you decide on surgery I too will be happy to answer any questions - send pictures etc. Good luck and try not to worry. - Valerie
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valerie, I had my PBM on 4/18/11 due to ALH and LCIS both in the left breast. I could not take the chance of tamoxifen with the side effects and going every six months for testing and the oncologist every 3 months. Plus My breasts were so extremely dense. i know this was the best decision for me. The pathology came back yesterday and it just so happens that there was LCIS in the right breast also. I knew that was doing to be, my husband kept saying no and I kept saying there will be something in that right breast. I know its a hard decision for women to make about getting there breasts removed, but you know what I rather to that then someday, the doctor telling me I have breast cancer, and have to have chemo. I wanted to do whatever I could to avoid that. I would not want my children to see me go throught that. Of course, as we all know we could all get some other form of cancer in our bodies, but we knew what we had in our breasts and had them removed to eliminate the risk. I pray for all women who have to make this decision and hope that God guides them in the right direction. Believe me I did a lot of praying these last seven months and its been the longest seven months of my life, But I feel sooo relieved right now and I'm HAPPY again. I just want to be happy and enjoy my husband and my children,
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