Does LCIS + ALH + ADH = PBM?

I am high risk (no kids, dense, Mom and Aunt with BC) and I am considering a PBM as well.  I've had three biopsies, fortunately all benign, but the last one was a VERY painful mammotome.   I don't have the BRCA gene but obviously some family history.   

Joanie---I was diagnosed with LCIS 6 years ago and also have family history of bc (mom had ILC). I do high risk surviellance of alternating mammos with MRIs every 6 months, breast exams on the opposite 6 months; took tamoxifen for 5 years (tolerated well overall), and now take Evista for further preventative measures. Early on, I was a bit consumed by it all, but then someone said to me "rather than wait for the other shoe to drop, why not put on the shoe and dance". That really helped me put it all into perspective. So while I know I'm high risk for a possible invasive bc in the future, I also know I'm doing a lot to decrease my risk (by up to 50% with tamox/ evista). While test time is a bit stressful, it is also comforting to know that I'm watched very closely, so hopefully things would be caught very early if anything were to develop. I'm not ready to go the route of BPMs, but I would seriously consider it again if anything more serious showed up in my testing. This choice isn't for everyone, but it works for me, for now. Please PM me if you'd like to talk.

Anne

Pardon me for being bold here, LCIS is NOT cancer from what I have read.It is a precursor to breast cancer yes, but it is not something someone is diagnosed with.

AWB, while I understand the worry and panic in your situation,I am a little taken aback that you have a whole diagnostic line signature.

LCIS is considered a diagnosis. Whether it be pre-malignant, as considered my most within the oncological community, or a pre-cursor, its still proliferative, but not a carcinoma. You are at higher risk for invasive cancer for BOTH breasts. Add a strong family history into the equation and a possible BRCA mutation, this equals HIGH risk surveillance.

FYI Joanie, even with little family history on BOTH sides as you mentioned, you may wish to consider genetic testing...certainly worthwhile, given your personal history as well. Have you had an MRI? If not, this would be highy recommended as a next step!

When you have multiple risk factors piling up ( dense breasts, multiple biopsies, LCIS| ADH | ALH, MRI's that are showing ongoing activity), I do think that one does feel the pressure to " do something". If you are in this category, you have a " heads up" opportunity that many women do not, getting a cancer diagnosis without warning.

That said, I believe much of how one tries to deal with this diagnostic situation is a very personal issue. For me, it came down to how well I did with uncertainty. In general. I did pretty well with it and monitored for many years. It did not take over my life. When the biopsies began mounting up and the MRI| mammo's started rapidly changing, my visits ended up being every 3 months, I was having multiple surgeries in a year---I had enough. Just at that moment, I got an equivocal MRI, which had some features of invasive cancer..some not. The best could not determine. They had to biopsy so much of the affected breast, I had at least 7 surgical hits in the same region in the past.....I went for bilateral mastectomies.

I guess my point is: you know who you are! I needed things to come to a head before I was prepared in any way to make this surgical decision. I could not take any preventative medication due to other medical issues, so surgery was my only possible intervention. If this is taking too much of your life time, if worry is becoming too familiar a companion---then maybe you want to think about this option. I saw a counselor during my " watch and wait " years, and resolved I would do surgery if my risk hit above 75% at any point. That gave me release, knowing I had a deciding line for myself.

You don't have cancer now, and you want to be able to enjoy this fact!!!!! Whatever allows you to have a quality of life right now is most important.

Moogie 

Joanie - I ditto everything Stonebrook has said. We were both at the same point last year and made the same decision. I would do exactly the same again. Hugs and best wishes are going your way. Take care. - Jean

Joanie,

I need advice too..... hopefully I will be scheduled soon for skin sparing, immediate recon.   Any advice appreciated!!!

Moogie, well said.

Multiple surgeries in a year, visits every three months--seems like the time has come.  But your situation illustrates how everyone has a different tolerance for "multiple surgeries", the worry and pre-occupation, the belief that you are a time bomb.

I am 53--was diagnosed in September with ADH/LCIS, BS said "tamoxifene, wait and see or BLM; I sought a second opinion from an oncologist who strongly recommended Raloxifene, 50% reduction in risk, less uterus or blood clot risk than Tamo--Ralox (EVISTA) has added bone and cholesterol reduction benefit. My oncologist reminded me that ADH and LCIS is not "additive"--but LCIS does "trump" ADH--but it's a condition--as inflammation is a condition. I am not ready to do BLM just yet, the open biopsy was pretty bad. ( I know women who had three children C section style to 'avoid" natural childbirth--childbirth was a cinch--and my 3rd was completely and utterly pain free--rather deliver three of those babies than do open biopsies.

My three kids, 12, 15 and 21. (I was an old mom, first one at 32). Breast fed all three. Menarche at 14--not early. Menopause at 49--not late. Dense breasts--never a lump.

My mom living,  a spunky 83, hysterectomy (fibroids) at 40, HRT  at 55 until 75.

 Dad's side, grandmother and 2 of 5 aunts had breast cancer--one perfect weight and the other 2 over weight premenopause.  One of 5 aunts(she was over weight premenopause ) participated in Tamo Star study and she is cancer free at 75.  So, I"m willing to give Raloxifene  a try.  So far, I am tolerating it well--after a one week "adjustment" period.  My oncologist seems confident "my condition is not genetic" and largely estrogen driven. Also, I'm starting weight watchers--never lost the extra 40 lbs. of "baby fat"--went into menopause at 49--way too heavy.

While breasts are merely glands that can be trouble makers--surgery is surgery and I did not have any fun with the mamotome biopsy or the open biopsy.  I can't fathom double mastectomy could be "well tolerated"--so I guess I need "imminent danger" or more miserable biopsies to bring me to the total surgery. If I do the BLM, I will ask for the tummy tuck too! 

Moogie, well said.

Multiple surgeries in a year, visits every three months--seems like the time has come.  But your situation illustrates how everyone has a different tolerance for "multiple surgeries", the worry and pre-occupation, the belief that you are a time bomb.

I am 53--was diagnosed in September with ADH/LCIS, BS said "tamoxifene, wait and see or BLM; I sought a second opinion from an oncologist who strongly recommended Raloxifene, 50% reduction in risk, less uterus or blood clot risk than Tamo--Ralox (EVISTA) has added bone and cholesterol reduction benefit. My oncologist reminded me that ADH and LCIS is not "additive"--but LCIS does "trump" ADH--but it's a condition--as inflammation is a condition. I am not ready to do BLM just yet, the open biopsy was pretty bad. ( I know women who had three children C section style to 'avoid" natural childbirth--childbirth was a cinch--and my 3rd was completely and utterly pain free--rather deliver three of those babies than do open biopsies.

My three kids, 12, 15 and 21. (I was an old mom, first one at 32). Breast fed all three. Menarche at 14--not early. Menopause at 49--not late. Dense breasts--never a lump.

My mom living,  a spunky 83, hysterectomy (fibroids) at 40, HRT  at 55 until 75.

 Dad's side, grandmother and 2 of 5 aunts had breast cancer--one perfect weight and the other 2 over weight premenopause.  One of 5 aunts(she was over weight premenopause ) participated in Tamo Star study and she is cancer free at 75.  So, I"m willing to give Raloxifene  a try.  So far, I am tolerating it well--after a one week "adjustment" period.  My oncologist seems confident "my condition is not genetic" and largely estrogen driven. Also, I'm starting weight watchers--never lost the extra 40 lbs. of "baby fat"--went into menopause at 49--way too heavy.

While breasts are merely glands that can be trouble makers--surgery is surgery and I did not have any fun with the mamotome biopsy or the open biopsy.  I can't fathom double mastectomy could be "well tolerated"--so I guess I need "imminent danger" or more miserable biopsies to bring me to the total surgery. If I do the BLM, I will ask for the tummy tuck too!