Pre-menopausal High Risk ladies... what choice have you made?
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...
Comments
-
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....
0 -
I don't know either... I just want to kind of be rid of them, as drastic as that might be...
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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
0 -
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.
0 -
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?
0 -
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 :
0 -
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.
0 -
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.
0 -
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.
0 -
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!
The Mods
0 -
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.
0 -
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,
From the Mods
0 -
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
0 -
I too, am high risk. I have been rotating MRI’s with mammograms. My doctor suggested 5 milligrams of Tamoxifen for three years. I’m really struggling with what to do. I am 48 and pre-menopausal. I’m interested to hear other information.
0 -
Hi Mollys30! We just wanted to welcome you to Breastcancer.org, and let you know that we're so glad you've found our Community. Until you get responses form other members, here is more information on Prophylactic ovary removal form our main site. We hope it helps and hope you'll stay connected here.
Best wishes,
From the Mods
0 -
Hi, I'm new here as well. I found out a few years ago that I have the CHEK2 genetic mutation which puts me at higher risk of BC. My mother and maternal GM also have had BC. For the past 3/4 years I have been getting alternation MRI's and mammograms every 6 months as many of you have. At first I figured I'd continue to do that, as catching cancer early generally leads to higher success. However, they caught my mother's early and it still spread to her lungs. So, since I have the opportunity to try to alter my chances of getting BC, I have to take it. As many have said, it absolutely is a very individual and personal decision, but this is the one I feel is right for me and my family. I'm extremely nervous, but also relieved too. I don't this won't remove my risk 100%, but removing 90-95% is pretty darn close! If I didn't do it and ended up getting BC, I could never forgive myself for not doing. I look at it as one of those "short-term pain for long-term gain" things! Wish me luck!!!!
0 -
Welcome, tmac22! And kudos to you for being your own advocate and making what is certainly a tough decision to give yourself the best chance of avoiding BC! Best of luck to you, please keep us posted on how it goes!
The Mods
0 -
My family history (mom and her two sisters, maternal grandmother, paternal grandmother and her sister) and breast density have me in the delightful alternating mammogram + ultrasound/MRI every six months. I hate it. I live in anxiety before every appointment after the last time when they found something that turned out to be a watch and wait. My next mammogram + ultrasound is on the 28th and I am feeling that very familiar sick feeling in my stomach again while I wait.
I’m turning 37 in about two weeks and I’m starting to strongly lean towards the prophylactic double mastectomy. Aside from the inconvenience of appointments, the anxiety alone isn’t worth it for me. If The Girls are going to be this problematic (and expensive) — I don’t need them around. I’ve breastfed my babies so at this point, they’re just ornamental for me.
Planning to talk to my Breast Specialist about my options later this month.
0 -
Hi DinoBiscuits! Welcome to Breastcancer.org and thank you for your post! You're sure to find our Community a wonderful source of advice, information, encouragement, and support whatever decisions you make on your breasts health.
Until you get responses from other members here, you may want to learn more on who is most likely to benefit from prophylactic surgery. Here is a link to an interesting podcast about Prophylactic Surgery for Women at High Risk: Part 1and Prophylactic Surgery for Women at High Risk: Part 2. Also, great information all about Prophylactic Mastectomy in our main site (just click on the link).
We hope this helps! Please let us know if there's anything at all we can do to help!
The Mods
0 -
I feel just like you! Breastfed 3 babies... I have no use for them any more! The anxiety every 6 months (or more with the watch and wait) is just debilitating. I wish there was an easy answer though, because my surgeon still doesn't think I should jump to the PBM. Ugh.
0 -
Interesting how we all see things differently. For years after my diagnosis I was able to get alternating MRIs and mammograms every 6 months. I loved it, because I felt that I was being watched closely and if anything developed it would hopefully be found when it was very small. Sure I would get nervous before the imaging, but I considered that a small price to pay compared to the benefit of the extra screenings. And I've never minded BI-RADS 3 assessments because to me, it means a very high likelihood that everything is fine, but it also means diagnostic screening, which I prefer. I've had enough BI-RADS 4s and biopsies that being able to pass on a biopsy has always been fine with me. Having had so many Bi-RADS 3s and 4s, I could trust my radiologist to not give a '3' unless she was pretty sure it's nothing to worry about.
All that said, having family history and screenings and call-backs are never fun, however we see things!0 -
This is just my story, I am not telling it to scare anyone. Part of me wants to warn you, and part of me wants to just vent about it
I was considered very high risk and only had ultrasounds every 6 months for about 5 years. No one ever talked to me about MRIs, taking preventative Tamoxifen, etc. Then, in 2013 I found a rather large lump that turned out to be benign, but had it removed because it was painful. The doctor that worked in the breast clinic would constantly tell me that I was a "frequent flyer" and one of the youngest patients to come in regularly. He also believed, and shared with me often that he believed there were too many biopsies done because most of them turn out to be nothing. (That is good thought, right?!) Because of his personal beliefs on this he never told me there were any major changes in my breast, even though there were 4 separate lumps he was watching but had labeled "probably benign." He never sent me for genetic testing even though every woman on the maternal side of my family has died of breast or ovarian cancer. He never once talked to me that my breasts were some of the most dense breasts he has encountered. I learned this from requesting my records a while after.
Anyway....
In 2018 I was diagnosed with actual breast cancer, in 4 different areas of the same breast. Those 4 areas had been on his watch list for 3 years. I cannot fully express what I wanted to do about it once I realized that. It was bad enough I had cancer even though every 6 months I had tried to scan for it, so I would be able to detect anything super early, but that it was >2.5cm and there were 4 lumps total!!!
I will have to say, if they had offered me a prophylactic mastectomy I probably would not have had it. I would have taken Tamoxifen had it been offered. And I would have wanted, and even requested an MRI of my breasts but it never happened.
It seems obvious now that I should have had a second opinion. But I have a different chronic illness and between that and trying to work full time as well as adding scans every 6 months that I had to take off work, I was just too stressed to consider that my doctors were not trying their very best. I also tried to sue the physician -- not for money, but for an apology note -- and the judge refused to allow the case.
Saying all of this I will also add, that most people will NOT get cancer. That's the good news!!! And reading all of the posts here it sounds like everyone has a pretty good handle on watching over their situation. My personal motto is to not worry until I have something to worry about, but you all sound like you are being smart and vigilant about your care. It can be stressful always having this "maybe" hanging over your head.
Thanks for reading, I guess I have been holding on to that for a while and needed to say it aloud to people that might understand how frustrating it was.
0 -
I'm high risk, but my BRCA genetic test was negative over 5 years ago. (The doctors told me that I didn't need to get a mammogram for awhile, until I was over 40.) When I finally got the mammogram, they found masses in both breasts. After sonograms, MRI, and biopsies (found to be pre-cancerous), the surgeon recommended that I get my genetic tests again. The genetic tests turned out to be abnormal (but still BRCA negative). However, the abnormal genetic test results were enough for the surgeons and the medical insurance to cover a double mastectomy.
I pushed for the double mastectomy, and I am very glad I did. I do not have to worry about getting MRI's and other testing every six months. Couldn't take the stress every few months, as you still had to get biopsies and other tests in-between.... and then waiting for results... too much to worry about.
If you had genetic tests a few years ago, I would definitely recommend getting the genetic tests again! Things keep changing as science is progressing.
0 -
bunchamunch, thank you very much for sharing your experience with genetic testing, and the choices you made following the second tests. You state some very important points for people to consider. We appreciate you posting.
The Mods
0
