We are 220,518 members in 81 forums discussing 155,810 topics.

Help with Abbreviations

Topic: Pre-menopausal High Risk ladies... what choice have you made?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Mar 29, 2019 03:25PM

bruinjamie21 wrote:

I'm wondering in those young, high risk ladies who HAVE HAD a scare before, like a biopsy that ended up being benign... how did you proceed? Anyone doing yearly MRI's on top of yearly mammograms? Is the constant waiting for results with that type of monitoring every 6 months unbearable? Anyone choose a prophylactic bilateral mastectomy? Anyone go another route? Seems like there's no right answer...

Log in to post a reply

Page 1 of 1 (8 results)

Posts 1 - 8 (8 total)

Log in to post a reply

Mar 29, 2019 04:13PM mmetch wrote:

I do alternate MRI and mammogram every six months. It's pretty stressful, I think. My most recent MRI found a mass, but it couldn't be located on the follow-up ultrasound, so now I have to wait another six months to check on it.

I had a previous biopsy and waiting for those results was very difficult. Knowing I'm in for a lot of future biopsies---ack. I don't know what else to do though....

Log in to post a reply

Mar 29, 2019 04:33PM bruinjamie21 wrote:

I don't know either... I just want to kind of be rid of them, as drastic as that might be...

Log in to post a reply

Mar 29, 2019 04:48PM cattledoglv wrote:

I’ve had ADH in both breasts now. I just had an MRI in November which found something. So I had to go for an ultrasound. Apparently, it was just one area of dense tissue? My surgeon now wants to use 3D mammo and US for monitoring because of the risk of the contrast every year. Also, the MRI for me is HORRIBLE! I’m good with that for now. I have very dense breasts and at my last mammo this month I got the all clear. I’m nervous because I’m not sure how they see anything in the sea of white in my breasts. I do exams on myself and hope it’s enough with that and mammo/us. You can talk to your dr about tamoxifen if you’ve had ADH. Many drs are trying that for high risk women. I have been given the option but I’m so young still and I’m not thrilled about it. We’ll see how the next couple years go.

ADH Rt 8/17 ADH Left 5/18 Surgery 8/25/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
Log in to post a reply

Mar 29, 2019 08:03PM Northerngirl485 wrote:

I was diagnosed with LCIS in January.So this puts me into a high risk category, every 6 months having mammogram then every 6 months having a MRI. Right away I thought that I wanted a bilateral mastectomy. I have done a lot of reading and reflection over the last few months and have decided maybe that isn't the best thing to do after all.

I guess I have decided with all the studies I have read and based on my personal thoughts/choices that going and getting tested every 6 months isn't as bad as I thought it would be a few months ago. It could always be worse, and yes it could always be better but it's a choice I have made for now. With all my upcoming testing if anything changes well I am free to change my mind and take a different treatment path. Everyone is different in their choices and they all are very personal based on many factors.

Log in to post a reply

Apr 18, 2019 09:56PM BlueBunny wrote:

I have a strong family history that's suggestive of BRCA2, but my multi-gene panel was negative. In addition, I have breasts that are about 80% dense.

I have MRIs due to the history/density combo, and for me, decided that catching it early if anything happens is OK, especially as my mother's cancer was oestrogen-positive and not too aggressive (grade 2). She had a large tumour (3.5cm) but still lived almost 15 years after diagnosis. I find the MRIs very reassuring.

I also have mammos and I am very good about self-exams. My GP offered me six-month clinical exams as well.

I considered tamoxifen, but it has serious side effects. I might think about it again when I'm older.

My mother didn't have genetic testing before she died, so it's possible that she had BRCA but didn't pass it on to me. That's why I decided against surgery - because I don't know for sure that I'm high-risk. She was an only child, so I don't have any maternal aunts as a guide, either.

For now, as long as I don't get any warning signs like hyperplasia, etc. I am happy not to undertake any physical or systemic alterations as long as I can get those MRIs.

Log in to post a reply

Jun 5, 2019 02:06PM onceabird wrote:

Late in replying here, as I just joined today and was just Dx ADH on Monday.

My breast specialist has laid out a plan of 6mo mammograms, MRIs, and physical exams for the foreseeable future. So I am to line up my regular annual gyn visit with one of the tests, and a PA at the breast center with the second diagnostic test. I am also to see a medical oncologist at the end of the month to discuss tamoxifen, possibly at a 5mg dosage in line with some studies done this year suggesting low-dose is the same efficacy without the side effects.

I am 34.

Dx ADH 6/2019 after surgical biopsy, starting 6-month monitoring
Log in to post a reply

Jun 5, 2019 03:06PM - edited Jun 5, 2019 03:07PM by Moderators

onceabird, sorry you find yourself here, but we welcome you to BCO. We are posting this in case it is helpful: ADH and Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After Non-Invasive Breast Cancer

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Jun 12, 2019 06:46PM msphil wrote:

hello I didn't have any history of breast cancer in family at time of my diagnosis was premenopausal. Diagnosed at 42 while planning our 2nd marriages healthy. But Praise God this yr I'm a 25yr Survivor. Positive thoughts and lots of faith and Hope. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married was planning 2nd at diagnosis 7 wks rads then 5yrs on Tamoxifen.

Page 1 of 1 (8 results)