I genuinely thought I could not possible hate ovarian cancer any more than when I lost my mom just a month ago. Turns out I can because my maternal great aunt just got diagnosed. My mom had no genetic mutations and yet my family has to endure this f*&^*(* disease again.
I wish I could just get a hysterectomy. I've had my own issues with ovarian cysts (pre-cancerous) and yet because I'm only 26; insurance won't pay for it. While irrational, I feel like I'm just waiting for it to happen to me.
Thanks for allowing me to rant,
Kris x.
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kristinaapril
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Oh I'm so sorry to hear this! Unfair is an understatement for what you and your family are going through again. Vent away, this is the place. Thinking of you.
What country are you in? I was not BRCA positive until after I got breast cancer/ mastectomy and 9 years later diagnosed with stage 3C Ovarian Cancer. Tissue from the TAH came back BRCA1!!!! This is a somatic (acquired) mutation. They can freeze your eggs. KEEP FIGHTING FOR YOUR PATIENT RIGHTS. KEEP ADVOCATING FOR YOURSELF. NO ONE ELSE WILL DO IT. With deep concern, T
I'm in the states. My mom had no germline mutations (even unknown mutations that may eventually be linked with OC) and when she had her TAH they tested the tissue for mutations and it came back negative.
The one thing I learned throughout my mom's journey is that you have to be your own advocate, no one else will do it for you.
I'm sorry to read this however now I'd say that there is reason to suspect some type of genetic mutation, the thing is it could be a genetic mutation they haven't discovered yet especially as you have ovarian cysts and your great aunt has now been diagnosed. The person I care for has had about 3 different people in her family diagnosed and her own oncologist has said that it's likely a genetic mutation that hasn't been discovered yet, what I would do is see if there's a way of finding out if there's a mutation or not by speaking with your mom's team if possible xxx
When my mom did her testing, the results actually came back that there was no genetic anomalies. It appeared that there were no genetic mutations - including ones that have not yet been identified to a higher OC risk. Again, I'm not sure how much I actually believe that; but that was just what I was told.
I would suggest it's worth seeking a second opinion on that as there could be something they missed especially if you have the results from the previous oncologist xxx
I'm Braca negative but my daughter and I both have the BRIP1 mutation, which has only recently been identified. My Mother had OC and I suspect at least one aunt did too.
Hi Kristina, I'm sorry to hear about your predicament. I have three daughters, one of them your age. Their mom died 2 years ago of OC, so did their grandmother and great grandmother. My daughter is thinking of removing her ovaries when reached 40. I fully support her. I am now thinking of her having BRCA test at the lab, expensive over here ,and needs doctors recommendation for the test. So I am still trying to figure out how.
Don't wait until she's 40. With her family history she could get this even in her 20's.
In US, her family history alone would compel insurance to pay for genetic testing, surgery, egg harvesting and freezing, all medications and follow up treatment.
Ah, my heart goes out to you. As explained above there have been new genes recently found so I'd check you've been tested for those.
I don't know if it's worth persisting with you Insurance because I don't know much about it but I'd press on. Another person looking at it may view the decision differently. In the meantime, I'd be very vigilant with symptoms, bloating, frequency of urination, pelvic pain, digestion problems. If any are persistent for more than two weeks get checked out. However if you don't have symptoms, shelve the worry and enjoy this precious life. Worry is an energy, joy and time thief. Perhaps you could practice mindfulness and relaxation to learn how to shelve worry.
Hi so very sorry about your mom, you have had to endure so much already. Are you in the states or in Europe? Did your mom go through genetic testing? You can request genetic testing as well..
My sister came back brca negative so what I do is undergo an ultrasound of my ovaries once a year. I reside in the states. Sending you peace and comfort, nancy
When my mom initially had her genetic testing come back negative for mutations; insurance decided that it wasn't necessary for me to have it done (ie: they weren't going to cover it). However, they will cover yearly CA 125 testing and a yearly ultrasound. Not the greatest but at least it's better than nothing.
I think I'm going to reach out and see if I'm eligible to be tested again. Doesn't hurt to ask.
I asked 3 medical professionals who were all skeptical of someone like you or I having the ca 125 done and all felt that the ultrasound was the best route. I am sure you like myself will always be hypervigilant to monitor what could be symptoms. I am so sorry again about your mom. I also asked the genetic counselor gyn oncologist and my obgyn if I needed testing since my sister was negative and told chances of me having it were very slim. I do think that 23 and me DNA test also tests for brca. Sending you comfort hugs
Hi. You’ve gotten excellent advice here. You should freeze your eggs and get at least your Fallopian tubes out as that’s where they think the cancer originates. Also find an excellent gyn who understands the danger and ask for regular screening.
You could consider getting your ovaries and Fallopian tubes removed. You are very young, though.
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