Genetic test results

[Cmarie03]

I got diagnosed with stage 3 rectal cancer at 33. Got genetic testing and the counselor really seemed to think it would come back positive for lynch. It came back negative - no mutations found. I’m taking results to md Anderson genetic counselor this week. Just surprised as I had prepared myself for a pos lynch result. This greatly affects my surgery - as in if my ovaries would come out and push me into early menopause. Any females tested neg for gene mutation and still opted for removal of ovaries??

I will of course be talking this over this week with my team at md Anderson but thought I’d ask in here. Ty

[boxhill]

Congratulations! The wait to hear whether one has Lynch is not pleasant, is it? BTDT. Definitely good that you are meeting with the genetic counselor. If I were you I'd read up on the subject so that you can ask the best possible questions...and write them down before you go in.

FWIW, the only people I've heard of having their ovaries removed are people with Lynch and people with ovarian cysts/tumors. Some people who have radiation, often with rectal cancer, are thrown into early menopause, some are not. If you want to have children, or more children, you might want to look into having eggs frozen beforehand. I know some people who weren't told about the possibility sufficiently far in advance or at all, and were not happy about it.

Not to be Debby Downer, but many women report vaginal stenosis and other nasty side effects from the radiation. Some of them say that they were never fully informed on the subject, on how and when to use vaginal dilators, etc. It can be helpful to talk to a gynecologist who specializes in helping women who are being treated for cancer. or so they say.

Best of luck to you.

[Wa76crc]

My genetic testic came back with no mutations detected. After several meetings with a genetic counselor, we know that there is an unknown genetic factor.... My grandfather was diagnosed with CRC at 51, my father at 60 and myself at 40. I continue to grow polyps at an alarmingly fast rate. I currently have colonoscopy checks every 6 months with 4-10 polyps found each time measuring between 7mm up to 1.5 cm. All polyps removed have high grade dysplasia.

I will be having a full colectomy as well as ovaries removed in the next few years. My ovaries grow cysts fairly regularly and I have started developing uterine fibroids.

My case may be a bit more extreme, however you may want to push for additional genetic counseling. At some point, there will be a genetic answer for my family, and I hope it will be before my children need to start screenings. At this point we can only go forward with colonoscopy screenings for every genetic family member.

[Cmarie03]

Congratulations! The wait to hear whether one has Lynch is not pleasant, is it? BTDT. Definitely good that you are meeting with the genetic counselor. If I were you I'd read up on the subject so that you can ask the best possible questions...and write them down before you go in.

FWIW, the only people I've heard of having their ovaries removed are people with Lynch and people with ovarian cysts/tumors. Some people who have radiation, often with rectal cancer, are thrown into early menopause, some are not. If you want to have children, or more children, you might want to look into having eggs frozen beforehand. I know some people who weren't told about the possibility sufficiently far in advance or at all, and were not happy about it.

Not to be Debby Downer, but many women report vaginal stenosis and other nasty side effects from the radiation. Some of them say that they were never fully informed on the subject, on how and when to use vaginal dilators, etc. It can be helpful to talk to a gynecologist who specializes in helping women who are being treated for cancer. or so they say.

Best of luck to you.

Yes they did counsel me on radiation possibly killing my ovaries. I will have to have a hysterectomy anyways no matter what, it’s spread to my uterus. I’ve been blessed with two children already so I’m continuing with treatment without egg retrieval. Ty for the insight!

I have read the thread on here about vaginal stenosis, definitely going to be asking about it at my appointments this week

[Cmarie03]

My genetic testic came back with no mutations detected. After several meetings with a genetic counselor, we know that there is an unknown genetic factor.... My grandfather was diagnosed with CRC at 51, my father at 60 and myself at 40. I continue to grow polyps at an alarmingly fast rate. I currently have colonoscopy checks every 6 months with 4-10 polyps found each time measuring between 7mm up to 1.5 cm. All polyps removed have high grade dysplasia.

I will be having a full colectomy as well as ovaries removed in the next few years. My ovaries grow cysts fairly regularly and I have started developing uterine fibroids.

My case may be a bit more extreme, however you may want to push for additional genetic counseling. At some point, there will be a genetic answer for my family, and I hope it will be before my children need to start screenings. At this point we can only go forward with colonoscopy screenings for every genetic family member.

Thank you for the response!! I have no family history of colorectal cancer at all (although I guess above my grandparents generation they didn’t test for it then anyways?). My mother and uncle have had polyps removed but only one or two. I guess I was just prepping myself to have this genetic mutation and be predisposed to all these other cancers and now it’s negative. I’m scared of having something develop down the line ... ovarian cancer. I will be discussing it further with the genetic counselor. I’m not sure if insurance would pay for me to have additional genetic testing but I’ll see what I find out this week at my appointments

[KimT]

I have lynch and did not have a choice on ovaries as I got ovarian cancer. I went into menopause at 33. I would advise keeping your ovaries. A lot of doctors are not supportive of hormone replacement in cancer patients. And menopause blows. It took me 7 years to get adequtw treatment for the menopause and even so, it’s not the same. Hormones are so important in overall balance. The risk of ovarian cancer is extremely low without a genetic component. Even with lynch, the risk is relatively low, only like 9% chance of getting it.

[Cmarie03]

Oh KimT I am sorry to hear that. I know and that’s why I was asking...my mom had breast cancer from taking hormone replacement for so long. I am worried even radiation will kill my ovaries but I guess I’ll find out

[Eleda]

Hi there,
I've tested negative for lynch and am about to do my reversal,,,,
Once I'm recoverd from that a trip to my gyney is next on my list for selective historectomy,,,,
Thanks to radiation I'm post menopausal ( but it's actually great)
My mam had breast Cancer last year and single mastectomy, so I'm taking no chances,
Yes the stats are low but so are the ones for colorectal cancer in Ur 40s !!!!!!!!
I've my 3 sons so I don't need my reproductive organs anymore so why leave them to be a target for one of the most fatal cancers( just my personal opinion)
Good luck with Ur appointment and Ur decision...

ADELE X