genetic testing - breast cancer risk
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Anonymous
I did at 39 after an LCIS diagnosis that we caught because I had been getting MRIs every 6 months or 1 year throughout my 30s. Very strong family history of very early breast cancer but all survivors and I tested negative for known BRCA mutations. Age at diagnosis in my family has been as young as 30, and everyone who survived was diagnosed during '30s. Those diagnosed in early 40s had metastasized cancer by that point and didn't survive. So when you have something that strikes the women around you down during their active mothering years and you know what chemotherapy and mastectomies that remove chunks of chest wall look like, the choice to manage the process when things first start going bad becomes easier. |
Anonymous
Also, if you're followed by a breast cancer surgeon in the years leading up to diagnosis, you will know they assign a risk number to you that changes as your data changes, including just with age or false alarm biopsies. After the LCIS diagnosis, my doctor told me my risk number had just gotten too high to limit action to the initial lumpectomy. She basically gave me a choice between Tamoxifen and mastectomies. For me, because I was 39, the idea of instant menopause freaked me out more than mastectomies. After all, all the women in my family have had mastectomies in their 30s, except for the ones who didn't and died. |
Anonymous
| Does anyone have a therapist they’d recommend for those of us with high cancer risk? I’m getting testing done soon but find that the stress of the unknown has taken a huge toll on my mental health. I chose to have children because at the time they didn’t have enough info to properly assess my risk. Now it turns out my risk may be very high ( parent had over 5 unrelated primary tumors). I would definitely act on test results if positive but like a PP said not everything is able to be caught even with testing. Sending positive thoughts to everyone dealing with this. |
Anonymous
I have a family history of ovarian cancer as well (although not my mother, as she had a prophylactic oophorectomy when she was 45 to avoid getting ovarian cancer). I have contemplated having my ovaries removed, as other women in my family have. I also had genetic screening about ten years ago and did not have any of the known mutations at that time. At my GYN appointment this year, my doctor shared that they have learned in recent years that most ovarian cancers actually start in the Fallopian tubes, not the ovaries. Thus, they now leave the ovaries and just remove the tubes, which also avoids the hormonal impact of taking the ovaries out. Just thought I'd share in case the hormonal aspect was part of your hesitation. |
Anonymous
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This is OP. Thanks so much for all responses.
This was extremely helpful. Me too - sending best wishes to everyone like one PP. I guess I’ll schedule it, even as reluctantly. I don’t know yet what I am gonna do if it’s positive but will think it through and clarity will come one day. And thx for the tips re. Life Insurance and long term care insurance. |
Anonymous
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This might be worth reading. I guess it depends on your risk level.
https://news.yale.edu/2016/01/21/removing-fallopian-tubes-keeping-ovaries-may-cut-cancer-risk-few-have-procedure |
Anonymous
Thank you! My gyn said it would be both of the ovaries and the fallopian tubes. I've been kicking this down the road because I don't want to face it. Fwiw, my mother also had pancreatic cancer and her doctors were never certain of the original site of the cancer. She died within 30 days of diagnosis. |
Anonymous
| OP, are you part of a high risk program? For me, my family has a strong history of breast cancer but we don’t have BRCA. I see the gynecologist and then the breast cancer center each year - so every six months someone is examining my breasts. I also have MRIs. If you aren’t doing this, then you should get the genetic testing. Why would you not want to manage your risk for something that if caught early, could be the difference btw. Life and death? |
Anonymous
This is OP. So, my gyn always has a worried face when examining my breast. I am supposed to do ultrasound every 6m and mammo every year; I am now 47. Mom is a cancer survivor; one breast was removed in a developing country. I do not know if the diagnostics there were correct. For some reason, I keep thinking what if it was just a cyst…. This was long time ago - I was in my 20s and did not dig into details and treatment — I was pretty ignorant and just kind of just financed whatever was asked…. I don’t think she had chemo/radio after the surgery. Plus, my paternal aunt had a bad cyst removed and went through chemo here in the US. So, based on family history, and multiple cysts identified by ultrasound, I was referred to see breast surgeon who was terrific. At the first check up, she is like - I can drain it right now if you want! I’m like, really? Okay (because I lost my sleep after that referral and getting cystic breast diagnosis). She drained it in two secs; there was liquid; and she said she is not gonna send it for further lab, as it’s clear water which means benign. That cyst popped up right after painful mammo by the way…. I discussed that situation here some time ago actually (as I kept quite while the technician put too much pressure). In any case - now I ask mammo people to ‘work with me’ as I have low tolerance for pain plus I do believe little cyst worsened after too much pressure. That cyst was like an quail egg protruding from the side of my breast and I NEVER had anything like that visible in the mirror before mammo… Sorry - I got carried away here… Long story short, I had a follow up with breast surgeon, and she is like why are you here? - because my ob/gyn told me so. Breast surgeon recommended her earlier next steps + mri: 1/ Breast MRI —- this will be my first time and scheduled this week (should give better images as I have extremely dense tissue) 2/ genetic consultation and testing (I did not do it last year - chickened out and breast surgeon was not happy about it during the follow up; she said this is what I need due to family history, so we have mite info to discuss all options; she also said it may be negative - then it’s also a really good info) 3/ continue with 1y mammo and ultrasound (I did not want every 6m ultrasound as it’s pricy) |
Anonymous
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I did the full genetic testing due to family cancer history and insurance covered it. Negative on all fronts.
My ob/gyn encouraged me to get the testing because of family history. Interestingly, my GP (at that time) did not encourage it. He was a bit of an a&&. Despite him being an a&&, he asked me what I would do differently if the testing was negative or if it was positive. He pointed out that people do get breast cancer and otherwise without have these identified genetic risks. He didn't want me to let me guard down if the results came back negative. I'm not "letting my guard down" but I do appreciate his perspective (he's still an a&&). |
Anonymous
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Op here
My reservations re. Genetic testing were because: If it’s negative then I wasted my money - I was fine anyways. If it’s positive then it will give me anxiety - shoot, I have the gene! Doctors did not really discuss preemptive strategies like surgeries mentioned in this discussion forum - I guess they save it for later when there are testing results…. With feedback above I’m of course reconsidering lots… |
Anonymous
Thanks so much for sharing this. I hope mine comes back as negative even as there are no guarantees. |
Anonymous
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Op here.
I called my insurance and it turns out they do cover both genetic testing and associated counseling… so the providers’ benefits specialist gave me wrong info - she looked up my insurance and told that my insurance does not cover counseling at all… I guess always best to go to the insurance directly… |
Anonymous
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OP, my ob/gyn and I discussed this last year (I was 49). In my case, I decided against the testing because the woman who had breast cancer was my maternal grandmother-she died premenopausal at 43, it was aggressive (this was in the 50's). My mom , who is in her 70's, has never had it and we have both passed the age when her mother died. I felt like, why get so worried over something that does not seem to be likely for me. Plus, I have dds' I don't want to worry either.
But if my mom had had cancer, I would probably have done the test. |
Anonymous
I am just reading all of this but was coming on to suggest you meet with a genetic counselor before deciding whether to get tested. They can help you analyze the pros and cons of testing. Gyn’s and Oncologists are coming from a different angle and want most people to test. Unless you have a first degree relative who was diagnosed with breast or ovarian cancer at a youngish age (under say 60), or have a first degree relative with other brca markers (say a father with pancreatic and prostate cancer), it might not be worth testing. Because, even if you are negative, if your mammo turns up something suspicious, aren’t you going to want it checked out? It is annoying having dense / cystic breast tissue but better safe than sorry. signed, someone who had breast cancer at age 30 and is brca1 positive |