PBMX for ALH or ADH?
Comments
-
rushell - I agree with Betsy - you need to find a breast surgeon. I had ALH, but also a strong family history - decided to have PBMX. Usually Tamoxifen is suggested along with close monitoring.
0 -
Ladies... Thanks so much for the info. After getting my diagnosis of ADH Monday, I have discovered several ladies in my area and social circle (Overland Park, KS) who have had PBMX for ADH and ALH and then reconstructive surgeries and are extremely happy with their decisions and the results. I have been able to speak to two of them and another who decided to take Tamoxifen and close monitoring for now. What surprises me is I know these ladies fairly well (though not extremely close) and never knew they were going through this. There seem to be so many! I have doing a lot of research and am beginning to realize how high my risk factor is and am appreciating the decision many of you have made.
0 -
bdavis;
There are specialists in my area (about an hour away) but no "breast' surgeons. I am starting to do some research for my area, Prince Edward island, Canada.
I think this is going to be a frustrating path for me here as many doctors around here don't like the thoughts of "preventative" surgery. I think I am gonna have to beat down alot of walls so I can have some peace of mind.
0 -
Rushell - just wishing you good luck - hope you can find a doctor. I think I was lucky that my surgeon was the one that actually brought up "preventative" surgery.
hugs, Valerie
0 -
bdavis - my surgery was the first week of June.
0 -
Rushell... I just travelled from New Jersey to New Orleans to have surgery so that I could have the procedure I wanted with the most qualified surgeons, And clearly being from NJ, having access to NYC and Philley, this was a big desision, SOOO... my 2 cents, travel if you need to to get the answers you need... it isn't a 20 session endeavor, but to have peace of mind and trust the advice, I would catch a plane if need be...If you don't have BS or quality BS in PEI, then I would go find someone who is...
Lightening, glad that you are happy with your results... I have had a rough week, but i am optimistic for the near future and trust i will have excellent results... had hip flaps in NOLA.
0 -
Rushell, I want to add my encouragement to seek out the best surgeons regardless of where they are. I too went to NOLA, had PBMX with immediate DIEP recon (for ADH dx). Traveling seems a bit scary but it's really not a big deal. So glad I did it.
By the way, as a kid growing up I spent 3 weeks every summer in PEI. My grandparents had a house in Orwell Cove. I haven't been there since they built the bridge, but I hope to go back one of these years. :-)
0 -
I'm new to all of this too, similar to Janine. My stereotactic biopsy results show ADH in my left breast. I'm scheduled for an appt with the surgeon Sept. 8th and will then proceed to have a further surgical biopsy after that. The ultrasound showed numerous cysts, which I've never felt in my breast (up to 1 cm) and I don't think this issue is related to the calc cluster or the ADH diagnosis.
My worry is for the high risk monitoring that I think will likely be the case, but I'll know more after consulting with the surgeon. I totally get it about why women choose the mastectomy route for this condition. I don't want to go through years of diagnostics and biopsies and worrying constantly. My breasts are so small that there won't be much left after a couple of biopsies. I don't like the idea of hormone therapy either. I find this article interesting and puts risk in prospective with regard to tamoxifen therapy. It shows you how your perception of risk percentages are skewed due to how it's portrayed.
http://www.dcis.info/understanding_risk.html
Anyhow, any advice for me or questions I should address at my appointment? By the way, I have no additional risk for BC outside being female.
Thanks.
0 -
Chickenpants, my diagnostic situation was the same as yours: dx'ed with ADH (small lesion) in the left breast. My doctors estimated my 30 year risk of developing BC, invasive or not, as 20% over the next 15 years. I was not keen on Tamoxifen, since I have had endometrial hyperplasia issues in the past, and besides, testing my onc did showed that I do not possess the enzyme to metabolize it correctly-- thus, little benefit in my case. Further, he said that if I decided to take Evista as an alternative, this would afford only a 4% relative risk reduction, which I didn't think was worth the risk of SE's.
I did a great deal of research and decided upon two modes of tx: first, got a breast reduction done by an oncoplastic team at Cornell in NYC which supposedly reduces my risk by approx. 50%. This is not a well know alternative-- in fact, my breast surgeon at NYU who had done my lumpectomy had never heard of it and the 2 institutions are less than 2 miles away from each other. The medical camp that does not know about this looked at me like I was deluded and insane. I realize, rereading your post, that being small breasted to begin with, this would not be an alternative for you though... Second, found myself a wonderful integrative onc (also at Cornell) who is watching me closely and has me on many supplements. I will be monitored with mammos, US, and MRI's rotating every 6 months.
I was actually considering a PBMX at the beginning of this whole awful process, but my breast surgeon flat out refused. Like you, I have no other family hx or risk factors. Still trying to figure out how to live without the worry taking over my life.
0 -
Yes, my point exactly, ie the worry due to high risk. It's not cut and dry about the results of my biopsy. It's the damn hanging out there never knowing is what's going to kill me, not any BC. Perhaps I should be asking to consult with a plastic surgeon. I want to explore this route prior to allowing the removal of any significant amount of breast tissue. A grape sized chunk would leave me disfigured and there's only so much I will allow. I want control over my health and my decisions about options to treat me. Once well informed and educated, I will be back in the driver's seat, not the BC (or threat of). A few of these women that have responded are very happy with their decision and may be similar personality types to me.
0 -
Chickenpants - I am such a worrier that my breast surgeon agreed that masectomies were an option for me for ALH (and family history - 40% lifetime risk of getting breast cancer). I did have a golf ball size piece of tissue removed (was barely an A cup) and the surgeon moved some tissue down from up above to fill in the gap - you could ask about that.
0 -
So glad that this thread was started. I had a stereotactic core needle biopsy last week. The prelim path report shows ADH. I have an appt. with BS this afternoon to discuss options. He mentioned on the phone an excisional biopsy. I have very small, very dense breasts and they had trouble with the core needle biopsy. I am still very sore and bruised and have a large hematoma. The nurse practictioner at the breast clinic strongly suggested genetic counseling due to my mom being diagnosed prior to menopause and my grandmother having ovarian cancer. Due to the pain and complications of the biopsy, I can't imagine having to go through this every year. Frankly, the thought of having to go through this again makes me sick to my stomach. Sorry that all are having to go through this but very grateful to have found this thread.
0 -
banana111 - Glad you joined us, wll not glad, but since you have this glad you found us. I didn't find this site until the day before my masectomies. You have probably read my previous posts, but I have a strong family history, had mother (who had bc) tested for gene, she was negative, but genetic counselor said I was still at a 40% chance of getting breast cancer at some point. I did all this after my ALH was found with a stereotactic biopsy and excisional biopsy. With ALH and ADH I think they want to make sure nothing else would be found.
So I decided to have prophylactic masectomies - I couldn't stand going through even more tests, I have been having mammograms since age 30 (was 49 at time of ALH diagnosis), previous biopsies etc. and I didn't want to take Tamoxifen, which is the recomended treatment for ALH, along with the close monitoring. If you are at the point of considering masectomies you might want to ask your surgeon today about it - I wish I would have forgone the excisional biopsy, since I decided on the masectomies anyway. I have been very happy with the whole process. Let me know if you have any questions as there are not many ladies that have had masectomies for ALH or ADH only, and who test negative for the gene. My surgeon supported my decision and insurance covered it because I did have ALH. And ask you surgeon if he does nipple/skin sparing masectomies!! I was very small, not even an A cup (also dense, which makes it hard to diagnois), so I went a bit bigger with the implants.
Hugs and good luck today, Valerie
0 -
I had ADH at age 35... Did the close monitoring, and got cancer at 47... Today, versus 13 years ago, you have options, but the wait and watch in hindsight was not the best option for me... I have since diagnosis had a lumpectomy, chemo and then chose bilat mx with diep hip flap recon... I could forgo radiation by having the mx and even though it wasn't medically necessary to have a mx, it was the right choice for me... I could not imagine continuing to wait, watch and monitor going forward... I needed more peace of mind. The percentage of adh or alh becoming cancer is about 25% versus the normal 15% risk,... So you need to ask yourselves how comfortable you are with the extra10% risk, and if you can handle a lifetime of monitoring and biopsies.
0 -
Plus the 25% risk goes up if you have family history, previous biopsies (I think)
0 -
Yes, I was also told the risk went up if you had a strong family history,and multiple biopsies by several docs. I also could no longer stand the monitoring and watching and waiting for cancer. The PBMX was the best thing I have ever done for I no longer have to worry about this!
0 -
I was diagnosed with ALH and LCIS in the left breast about a month ago. In the last three weeks I've had a biopsy, MRI, where they found a second area of concern, ultrasound where they couldn't locate the second area of concern, which then prompted an MRI-driven biopsy of second said area yesterday. Got my results today. More ALH but no cancer. I don't know if I have dense breasts. No one has ever made comment one way or another. Are dense breasts problematic? I don't have recent history of BC, only very distant, maternal great gma and gg gma, which they tell me is too far away to matter. Haven't been tested for BRCA. That said, my question is if a mastectomy is reasonable for me or is a wait and see approach better? Am not thrilled with going the tamoxifen route. I have appt with one BS on Mon and another BS probably later in the week to hear their opinions and recommendations. Would anyone in this forum like to weigh in?
0 -
LCIS... isn't that the lobular version of DCIS?? which IS cancer.
0 -
Yes. The doc explained LCIS not as cancer but rather similar to ALH but a more advanced stage. I'm just learning about this stuff but my understanding was that DCIS was more of a precancerous stage as well, but residing in the duct instead of the lobules. However, the radiologist yesterday said there is a direct correlation with ductal to BC and they would take a more aggressive approach whereas with LCIS there has not been a proven correlation and drs are split on the best course of action.
0 -
Some people also say DCIS isn't cancer, but it is... I would look deeper into that diagnosis... my 2 cents.
0 -
Thanks. I'm trying to read all I can and will see what the Breast surgeons say and try to make a good decision. I'm 46 and not married to my breasts. This is all so new and sudden I'm trying to learn all I can and make an informed decision.
Another concern: The first BS said the tissue taken out with the biopsy would replace itself but I'm reading that with some anyway this is not the case and your breast decreases in size. Not sure I have extra to lose. Does it depend perhaps on how much tissue is removed?0 -
I had an excisional biopsy 14 years ago for ADH... The area does not get replaced with breast tissue, but fluid fills the void and for me I LOOKED Normal, but if you touched me it was an indentation... Then I had a lumpectomy in December and the BS took not only the cancer, but also a couple other suspicious areas... again, they filled in with fluid. I am/was a C/D cup so it is easier to mask if you are a larger cup size... If you really looked at me naked, a keen eye could tell the difference in size, but otherwise not... At my mastectomy, the left (cancer) breast was 580 g vs my right which was 720g, so they were indeed different... just didn't look it.
0 -
morymc-------I was diagnosed with LCIS 8 years ago and my risk is further elevated due to my mom's history of bc (had ILC, but is a survivor of nearly 25 years and doing well). I do high risk surviellance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, and preventative meds (I took tamoxifen for the full 5 years and now take evista for further prevention). With LCIS it is not an issue of which choice is "better", they both have their pros and cons. It is an extremely personal choice that no one can make for you. We can only each tell of our individual situations, but your situation will be that as well--individual. Since it is non-invasive, there is no rush with LCIS. You can take your time to make decisions, research, get 2nd opinions (if you choose), or to just let it all sink in. The route I have chosen works well for me, but I am always open to reconsider my options of PBMs. PM anytime me if you'd like to talk.
anne
0 -
Thanks so much for your input Anne. I know it is a personal decision and you've given me a more personal look at another option. I'm glad it's not a decision that needs to be made immediately because right now I can't seem to see the right path for me. I spoke with the first surgeon on the phone this morning. He didn't talk options with me at all. Basically said I think our next step is to remove the bad tissue. Two golf ball size chunks out of my barely B boobs. I asked a few more questions but do not feel he is a good fit for me so told him I'd discuss things with my husband and get back to him. I am looking forward to speaking with the other surgeon who hopefully will be more amenable to sharing information and answering questions. And Betsy, I appreciate your input as well. Many thanks. Mauricette
0 -
I had LCIS with what turned out to be at least three invasive lobular tumors imbedded in it. Didn't get clean margins after a lumpectomy. So I had a partial mastectomy (they took about 1/3 of the breast) and still didn't get clean margins. I then had a breast MRI of both breasts because I was having symptoms (breast pain, a more solid feeling area and a weird cluster of blood vessels in the skin over it - very unusual) in the other breast too. The MRI came back as no cancer in either breast even though the pathology report from the partial mastectomy indicated that the surgery had left cancer. So at that point, I decided to have a bilateral mastectomy. My mother died of breast cancer after being diagnosed with a small, stage 1 tumor and having a lumpectomy. I felt that I was going down the same path. I think my case may be a bit extreme, but it's fair to say that lobular breast cancer can be hard to detect radiologically. By the time I made the decision to have a bilateral mastectomy, none of my doctors were against it. This is just one example. There is, however, some research on this topic that I list below (just Google if you are interested). One option that was mentioned in earlier posts if you have large breasts is to have breast reduction surgery instead of mastectomy. If you get clean margins on the noninvasive patches (and the pathologist does not find any invasive cancer), you get a substantial reduction in risk while having a less difficult surgery with better cosmetic results. I've also included a study on this below:
"Conservative surgery in patients with multifocal/multicentric breast cancer"
"The Use of Oncoplastic Reduction Techniques to Reconstruct Partial Mastectomy Defects in Women with Ductal Carcinoma In Situ"
"Mastectomy of the other breast improves survival in some cases"
"A nationwide epidemiologic study of breast cancer incidence following breast reduction surgery in a large cohort of Swedish women"
0 -
Sarah,
So heartening to learn of someone else who has heard of breast reduction as an option. I am in NYC and very few people, even at prominent hospitals, have heard of it. When I brought it up, they looked at me like I was delusional. And yes, cosmetically (not that this was my most important criterion by any means, but still...) my results were just amazing.
0 -
I had gotten BRCA tested a few years ago (my mother had premenopausal cancer and my father's mother had cancer. I have no aunts, no cousins, everyone was only children for a few generations, and my mother's mother was adopted) and I was negative. Stopped worrying. Last year I had a lump and weird sensations. Mammogram. Ultrasoud. Biopsy. Lumpectomy. ADH. According to Gail Model, 40% risk. According to British model (which is supposed to be way more accurate), 70% risk. Whoa. Went to oncologist, who put me on Tamoxifen. 3 weeks into it I had hip pain so excruciating that I could barely walk and I was screaming at my children about everything. And am I remembering wrong or is Tamoxifen only good for estrogen cancers? My mother's was estrogen-negative. So I opted for preventative mastectomies. Just got my nipple tattoos on Monday. I'm officially done.
0 -
Tamoxifen is for estrogen cancers... but if you have had ADH, it is estrogen driven?? Tamoxifen reduces the ADH... You now have me worrying about Tamoxifen as I will be starting it in December... I had BMX this summer, butthe tamoxifen reduces the risk of systemic cancer ... and mine was 98% ER/PR positive... For someone with just ADH and having had a MX, I think you are all good.
0 -
kjbrown - glad you are done!!! When I was diagnoised with ALH (mom had bc - negative for gene, my risk was 40% also) I too didn't want to take Tamoxifen and had preventative masectomies. With your experience glad I didn't start the Tamoxifen. There aren't too many ladies that have had prevenetative masectomies for ADH or ALH - so nice to meet you.
Hugs, Valerie
0 -
Valerie,
I am two week post op prophylactic bilateral mastectomy and immediate reconstruction with saline implants. I was diagnosed with ADH right breast and ALH left breast in August 2010. In August 2011 new microcalcifications of right breast and now ALH in right breast. I had been on Tamoxifen since October 2010. Pathology post surgery showed no cancer, but more ALH in left breast again! The decision for me was an easy one, I actually had wanted the mastectomies last year but after speaking with my BS, oncologist and husband, decided to try the conservative approach with Tamoxifen. Long story short, I am recovering extremely well. Find a good BS not just a general surgeon and a good plastic surgeon. Both of mine are women and I think that makes a big difference. My implants were placed at the time of mastecomies, so I didn't need to go through the tissue expander route. Since being off Tamoxifen, (really didn't realize what it was doing to me physically) I no longer have generalized body aches, constipation, etc. My sense of smell and subsequent taste has improved greatly. Contact me directly if you have any more questions.
0
