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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 01:25PM

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...

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Mar 29, 2019 02:13PM 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....

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Mar 29, 2019 02:33PM bruinjamie21 wrote:

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

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Mar 29, 2019 02:48PM 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 8/24/2017 Lumpectomy: Right Surgery 5/17/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary
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Mar 29, 2019 06:03PM 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.

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Apr 18, 2019 07:56PM 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.

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Jun 5, 2019 12:06PM 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
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Jun 5, 2019 01:06PM - edited Jun 5, 2019 01:07PM 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

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Jun 12, 2019 04:46PM 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.

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Jul 17, 2019 07:37PM ElCart wrote:

hi bruinjamie21

I'm curious what you decided, if anything yet? I was diagnosed with extremely dense breast tissue, and a complex sclerosing lesion. That coupled with my mom's triple-negative BC put me at 45% lifetime risk. My Bs gave me 3 options vs

1. 2x scans (mammogram and US both missed this mass that was 4.4 cm!!!!!!! So I honestly see very little value in those with my dense breasts)

2. Tamoxifen

3. Double mastectomy with reconstruction

she set me up with appointments with an MO and plastic surgeon so I can better understand the process with each, what to expect, etc. she said that anytime you get over 30% they start discussing options for prevention.

So, while my "benign" diagnosis was reassuring, now I'm concerned about overall lifetime risk. (I'm 44 and have 2 very young kids. Not to mention I just lost my dad to cancer, so that is in my mind with my littles)

I was told tamoxifen would only improve my risk from 45% to 30%. And a double mastectomy would improve it from 45% to 2%. Much better odds, and I'm seriously considering saying goodbye to the girls.

Anyone else have to consider the same? Any other thoughts to share that I should consider in my decision?

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Jul 17, 2019 09:19PM - edited Jul 17, 2019 09:31PM by rjks

My mom had breast cancer twice and finally died of ovarian cancer, so I did the genetic testing and found out I'm BRCA1 positive in 2013. I waited until October2018 (39 years old) to have nipple sparing dmx. I had the reconstruction done in March 2019, and I'll go in for a revision this August 2.

Before my dmx I went in for MRIs (and ultrasounds) and exams, saw a doctor every four months. I decided to go for the surgery because of my risky past (smoking for 15 years plus many irregular test results over the years) and, ultimately, my family. My dad is freaked at the idea of me being diagnosed and just about begged me to go through with it, and my siblings were relieved also. And it was really stressful waiting for results all the time...waiting for the shoe to drop. (Even without BRCA1, both sets of grandparents and two paternal aunts, plus ten maternal aunts, and my dad had some form of cancer (females, all breast).)

Of course, my doctor just reminded me that BRCA1 means the real danger is ovarian cancer, so I've got to get my ovaries removed. But they can wait until after I try to have a baby. I won't let the doctors hurry me or go against my heart. They are discovering new cures every day, and my friend saved his own life by changing his lifestyle (a la eastern medicine). I would advise everyone to follow their heart.

Still, I now have round perky boobs that are slightly lopsided (hence the revision Aug. 2). I don't regret the decision to replace my real breasts with plastic. It was not easy. But it was worth it, I think. I won't be getting breast cancer this lifetime. Good luck with your decision :

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Jul 17, 2019 09:43PM Beesie wrote:

rjks, I'm sure you know this, but in case not, and for others reading, I wanted to point out that you can still be diagnosed with breast cancer after a bilateral mastectomy. A mastectomy can never remove all the breast tissue - some remnants always remain, usually against the chest wall and the skin. Breast cancer can develop in that remaining breast tissue. Generally the risk is about 1%-2%, but for those who start off at a higher risk, being BRCA positive, for example, the risk might be a bit higher. I think I read somewhere that a BMX reduces risk by about 90% - 95%. That's really significant, but it's not 100%.

That's not to scare anyone but just to make sure everyone is aware. It's important to still do breast checks and to get any new lumps or breast changes looked at by a doctor. I've been on this site for a long time, and unfortunately I have seen several cases where women thought that they couldn't get diagnosed with breast cancer after a BMX, so they weren't concerned when a lump developed and then waited too long to get the lump checked out. Much better to be aware of the risk and then hopefully never have to deal with it.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 27, 2019 06:25PM Ja9831 wrote:

Hey ladies! I just had a nipple sparing dmx w/ tissue expanders put in on June 28th. I was diagnosed with LCIS after a lumpectomy for a intraductal papilloma. My mom died from breast cancer 4 yrs ago. For me this surgery was a no brainer. I wasn’t ok with going on meds forever and doing the screenings and biopsies. Nothing is going to be 100% but I felt if I can control some part of the percentage then hey why not take the big chance. Do what you feel is right for you.




Dx 4/8/2019, LCIS, Left
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Sep 19, 2019 08:26PM Llucz wrote:

I was recently dx with LCIS (Aug 2019) after excisional biopsy for multiple papilloma. I just started Tamoxifen and will have 6 month MRI in January. In the meantime, I'm going to have my plastics consult this fall and assuming there are no issues in January... I'll schedule my PBM.

I'm BRCA negative but carry a lifetime risk of 70% (average of 3 risk models). Just turned 40 in May and I have no family history of BS, but there is ovarian and cervical.

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Sep 19, 2019 09:26PM Moderators wrote:

Welcome, Llucz, and thank you for sharing your story with us! We hope your treatment goes well, and that the appointment with plastics does, as well!

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Sep 29, 2019 01:36PM prepmom wrote:

On May 24th of this year, I was diagnosed with DCIS (50 years old, pre-menopausal). After an MRI, leading to additional biopsies, I was further diagnosed with LCIS and ALH. My mother is a 25 year survivor of pre-menopausal BC. My paternal aunt died of BC at 59. I was genetically tested for a panel of 15 gene mutations - all negative.

I sought the opinions of 2 BS at 2 well-regarded BC centers / research facilities. Both BS recommended BMX, based on family history, age and diagnosis of both DCIS and LCIS. They agreed that the forward risk of invasive cancer over my lifetime would be high.

On 08/14 I underwent BMX with tissue expanders. I could not have emotionally dealt with the high level of surveillance that would have been required had I opted for a lumpectomy, radiation and tamoxifen. I now require no additional treatment. Recovery from this surgery has been more difficult than I ever imagined (physically and mentally), yet I am content with my decision. On 12/2 I will have my exchange surgery.

I have learned so much throughout this journey. We all have a common bond, but each a unique story. What is right for me, may not be right for you. We may have the same surgery, but our experiences will not be the same. All we can is offer support because no one understands until they've walked in our shoes.

Dx 5/24/2019, LCIS/DCIS, Left, <1cm, Stage 0, Grade 3, 0/5 nodes, ER+/PR+ Surgery 8/14/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery
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Sep 29, 2019 04:42PM Moderators wrote:

prepmom, welcome to Breastcancer.org and thank you for sharing your story too! We hope you will stay connected here as we would love to hear more from you. If you have any questions for us please do get in touch.

Warm wishes,

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Nov 26, 2019 08:19AM MangoGirl wrote:

Hi, I am diagnosed with ER and PR positive breast cancer in January this year, tumour size 6cm, 8 nodes positive. I have undergone bilateral mastectomy, chemo (4AC, 4 Taxotere) and 15 rounds of radiotherapy. My genetic testing is pending. Absolutely no family history of breast/ovarian cancer. I have completed family. I am struggling if I should go on with prophylactic oophorectomy. But my oncologist is against it as he thinks that the risks outweigh the benefits. Is there premenopausal ladies like me who had prophylactic oophorectomy? Mind sharing how you all decide? Thanks a lot

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