Hi Ladies!

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Katrinka123
Katrinka123 Member Posts: 51
in Uterine/Endometrial Cancer #1
It's been a bit since I've checked in. My heart breaks for all of the new participants, as well as for the ladies I recognize who are continuing the battle! I am uplifted at the high fighting spirits, and feel the warmth of a true hug from those with words of support. You are all amazing women!

I just hit my 2 year post treatment mark in April. NED on my scan and a consistent CA-125. I decided to do some genetic testing in December, and learned in February I am positive for Lynch Syndrome. On one hand it was a blow, and then on the other, it resolved the question I always carried in my mind - was there a way I could have prevented the uterine cancer? (Was it because we put the microwave in the kitchen island where I stand to prep? Is it because I only like the red jelly beans? lol) Had I known in advance, I would have had the full hysterectomy, but going forward, this knowledge is power. I can be proactive in a very specific way now. I have also learned based on my specific coding, if there is such a thing as good or bad Lynch Syndrome, I have the good, which reduces my chances of the cancers related to this syndrome.

As far as my boys, we don't have to make any decisions until they reach 25, which is still 9 years away for my oldest. I can't imagine the advances in that time.

Warm thoughts and prayers for all of the brave warriors here!

-Kat

Comments

  • Becky444
    Becky444 Member Posts: 29 Member
    #2
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    Lynch Syndrome
    Hi Kat,
    Thanks for all your uplifting words for everyone. It certainly isn't our choice to be in this situation but I too find this as a wonderful support group. I'm about 1-1/2 yrs past treatment for UPSC and am doing very well. I was also diagnosed as Lynch Syn. MSH6. Is that what you were referring to? It increasing chances to 30% above the general population. I have a lot of testing that goes on continually but it is worth it. I have been kinda looking for someone in the same type of situation.

    Thanks for posting. I don't post a lot but read each day & keep you all in my prayers. It certainly does tie our hearts together. The best to all brave warriors.
    Becky
  • Katrinka123
    Katrinka123 Member Posts: 51
    #3
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    Becky444 said:

    Lynch Syndrome
    Hi Kat,
    Thanks for all your uplifting words for everyone. It certainly isn't our choice to be in this situation but I too find this as a wonderful support group. I'm about 1-1/2 yrs past treatment for UPSC and am doing very well. I was also diagnosed as Lynch Syn. MSH6. Is that what you were referring to? It increasing chances to 30% above the general population. I have a lot of testing that goes on continually but it is worth it. I have been kinda looking for someone in the same type of situation.

    Thanks for posting. I don't post a lot but read each day & keep you all in my prayers. It certainly does tie our hearts together. The best to all brave warriors.
    Becky

    Yes, that Lynch!
    Becky,

    Testing for me is going to be routine, but perhaps more frequent. I originally thought I would do a colonoscopy yearly, but according to my specific coding every second or third year might be prescribed. For me, I'll be more comfortable with yearly if insurance will go along with that. I was also advised to have a baseline endoscopy done when I do the next colonoscopy (eh, what's one more thing stuck in one more place lol). Bladder cancer is a concern, skin cancer.....

    It's not a great diagnosis, but then again, how many people are walking around with it and don't have an early warning bell and the benefit of catching a problem at the front end?

    -Kat
  • upsofloating
    upsofloating Member Posts: 466 Member
    #4
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    Becky444 said:

    Lynch Syndrome
    Hi Kat,
    Thanks for all your uplifting words for everyone. It certainly isn't our choice to be in this situation but I too find this as a wonderful support group. I'm about 1-1/2 yrs past treatment for UPSC and am doing very well. I was also diagnosed as Lynch Syn. MSH6. Is that what you were referring to? It increasing chances to 30% above the general population. I have a lot of testing that goes on continually but it is worth it. I have been kinda looking for someone in the same type of situation.

    Thanks for posting. I don't post a lot but read each day & keep you all in my prayers. It certainly does tie our hearts together. The best to all brave warriors.
    Becky

    Wonderful to hear from both
    Wonderful to hear from both you ladies and that NED continues to dance with you! Good news such as this is so welcome, and necessary here.

    Thanks!
    Annie

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