Lynch Sydrome

Sigma34
Sigma34 Member Posts: 203
edited March 2014 in Colorectal Cancer #1
Hi,

I was wondering if anyone out there has Lynch Syndrome (and you're a woman) did you opt for a hysterectomy? I'd like to hear anyone's thoughts on it.

Thank you,

Christine

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Woops!
    Hi, Christine

    I've been thinking about you and have missed seeing you around - I just wanted to jump in on your post and say HI!

    I've been through a lung surgery and another minor surgery since I talked to you last, but am on the mend and trying to get better each day, but I just have to be more patient.

    I'll get outta' here, since I can't answer your question, but just had to say Hi to you.

    I hope things are going well for you - check in more often, I miss hearing from you and how things are going.

    -Craig
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #3
    Sundanceh said:

    Woops!
    Hi, Christine

    I've been thinking about you and have missed seeing you around - I just wanted to jump in on your post and say HI!

    I've been through a lung surgery and another minor surgery since I talked to you last, but am on the mend and trying to get better each day, but I just have to be more patient.

    I'll get outta' here, since I can't answer your question, but just had to say Hi to you.

    I hope things are going well for you - check in more often, I miss hearing from you and how things are going.

    -Craig

    Lynch
    Hey Christine,
    I don't know what Lynch Syndrom is can you explain??? Thanks JULIE
  • jamjoe
    jamjoe Member Posts: 6
    #4
    lynch here
    hi chris
    yes im in your boat as a lynch fellow but im male
    my big family also are carriers
    some girls have opted for it
    what age are you? what do drs suggest?
    have you keep up in research? have you been diagnosed? do u have it? there are so many questions that come up and after that you still have 99 more questions.
    i am a late stage 3 survivor primary caregiver to my brother in 1994 and lost my mom to it 3 weeks ago
    still soon after the effects are deep in my bones. i hope i helped you. feel free to reply
    jamjoe
  • Sigma34
    Sigma34 Member Posts: 203
    #5
    Sundanceh said:

    Woops!
    Hi, Christine

    I've been thinking about you and have missed seeing you around - I just wanted to jump in on your post and say HI!

    I've been through a lung surgery and another minor surgery since I talked to you last, but am on the mend and trying to get better each day, but I just have to be more patient.

    I'll get outta' here, since I can't answer your question, but just had to say Hi to you.

    I hope things are going well for you - check in more often, I miss hearing from you and how things are going.

    -Craig

    HI Craig!
    The kids still pray for you and others on the site. Such a blessing you are healing and getting a little stronger everyday. I rarely post but always read up on how everyone is doing. This site brings such comfort to me and thank you for thinking about me.
  • Sigma34
    Sigma34 Member Posts: 203
    #6
    Julie 44 said:

    Lynch
    Hey Christine,
    I don't know what Lynch Syndrom is can you explain??? Thanks JULIE

    Julie,
    I am still learning
    Julie,

    I am still learning about HNPCC or Lynch Syndrome myself. Sounds like Jamjoe would be the one who could fill us both in on some information.
  • Sigma34
    Sigma34 Member Posts: 203
    #7
    jamjoe said:

    lynch here
    hi chris
    yes im in your boat as a lynch fellow but im male
    my big family also are carriers
    some girls have opted for it
    what age are you? what do drs suggest?
    have you keep up in research? have you been diagnosed? do u have it? there are so many questions that come up and after that you still have 99 more questions.
    i am a late stage 3 survivor primary caregiver to my brother in 1994 and lost my mom to it 3 weeks ago
    still soon after the effects are deep in my bones. i hope i helped you. feel free to reply
    jamjoe

    Jamjoe,
    You sure have been
    Jamjoe,

    You sure have been through a lot of loss. :( I am so sorry. I lost my dad one year ago to prostate cancer.

    I will get the results back in a couple weeks. There is a lot of family history with cancer. I had a hemicolectomy in June to remove cancer at 41. My almost 20 year old son just had a colonoscopy and his doctor was anxious for me to have the genetic testing as well. I will keep you posted on my results.

    Thank you for responding to my post. Talk with you soon.
  • jen58
    jen58 Member Posts: 34
    #8
    lynch
    my husband is in the same boat -- his father and oldest brother both got colon cancer and each passed away (father 12 yrs, brother 18 mos) -- my husband now has IIIB and had his entire colon removed, but had an ileorectal anastomosis (sp) so no bag

    he is starting chemo in just 2 days -- his sister has had the genetic test and they have found a mutation, but can't determine it, until the results of my husband's come back (which should be any day now) -- we have also had our 13 yo daughter tested, but they wont run her test until my husband's comes back

    however, it's pretty much been deemed that he does have lynch (HNPCC) there's almost NO doubt.

    good luck to you
  • usakat
    usakat Member Posts: 610 Member
    #9
    Hello Christine!
    So sorry about your cancer and Lynch Syndrome diagnosis - you're not alone.

    I have HNPCC / Lynch Syndrome. I was diagnosed with colon cancer at 42. During my hemicolectomy surgery endometriosis was found. Several months after completing chemo I began to have problem periods, and I started growing large cysts in my uterus and had an ovarian cyst that would not go away. Since I was not going to have children, and due to the assorted problems I had, and because of my high risk for endometrial/ovarian cancer (my primary concern), I opted for the complete hysterectomy.

    I do not take HRT. For about 9 months I was on a drug called Megace - it was to inhibit tumor growth and solve problems with hot flashes, but the side effects (mostly weight gain) became problematic. I'm now toughing it out, but glad I had the surgery.

    I had the minimally invasive DaVinci robotic surgery. It was easy! In and out of the hospital on the same day and well recovered after about 3 days.

    Having a hysterectomy is a very personal choice - perhaps make a pros and cons list for yourself and then decide. You might want to speak with a oncologist GYN who understands HNPCC to advise you. I did and was happy I did so - my onco/gyn is the best!

    Good luck and let me know if you have any other questions.

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