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Now I'm at risk for colon cancer!!! Now I'm at risk for colon cancer!!!

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Unread 09-24-2009, 03:21 PM
Now I'm at risk for colon cancer!!!

I am recovering nicely from my hysterectomy and today I saw the doctor for my post op appointment. I was told that I had stage 1 endometrial cancer, but that everything had been removed and I would need no further treatment. Great. So I asked her a few, but as usual, the answers scared me. I asked her if the endometrial cancer puts me at a greater risk for breast cancer. She told me, no, but now I am at a greater risk for colon cancer and I should get a colonoscopy once I fully recover. My grandfather had colon cancer back in 1960. It's in my family. What if I hadn't asked this question. Why don't doctors offer this information on their own? I looked it up and if I carry the hereditary HNPCC gene than I have an 80% chance of developing colorectal cancer. I was so "healthy" just last month and now I'm living in the cancer world. It just won't seem to sink into my brain. I'm going to schedule a genetic test for the gene in a few weeks. I thought I could move on with my life, but it feels like the cancer fairy will always be flying over my head. I don't know what to think or feel anymore. I guess I'm just feeling a bit discourage and vulnerable right now.
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Unread 09-25-2009, 03:55 AM
Re: Now I'm at risk for colon cancer!!!

I, too, have a father that had colon cancer and then I got ovarian cancer. I was healthy before my dx, also. A question for you--how old was your grandfather? My doc said since my dad was 70 when he had colon cancer, there is less chance that my cancer fits the "HNPCC" profile, so that was good news. But, I still do worry and they still watch me closely.

I understand your worry. I worry about cancer returning, I worry about the colon cancer and breast cancer, too. I worry about skin cancer (dad/grandmother had it, and i burned a LOT as teen). Then I've had so many CTs I worry about a cancer from high amt of radiation. Once we have cancer, I think our amt of worry about stuff greatly increases. I did find I worried less and less as time went on so hopefully the worry will decrease for you, too!
Unread 09-25-2009, 05:54 AM
Re: Now I'm at risk for colon cancer!!!


Thanks for your reply. It was very helpful because it hadn't dawned on me to Google "HNPCC profile". I did that a few minutes ago and yes, I don't have some of the risk factors, so that is encouraging. My grandfather died in 1960 of colon cancer and I believe he was about 70 years old at the time. I'm sure you are right about the cancer fears subsiding with time, but for now it is so scary. I guess it's just that I was only diagnosed a month ago. I haven't had time to adjust to it very well. Thank you again for your reply. It sent me down the road to some very good information.
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Unread 09-25-2009, 06:31 AM
Re: Now I'm at risk for colon cancer!!!

Saridah -

I think just about any cancer in that area puts you at a higher risk of colon cancer. If the cancer hadn't left your uterus that is much better.

When I told my gyn-onc that my mother had both uterine and colon cancer (amazingly unrelated to one another) and asked about the colonoscopy he said "let's do one before surgery because it will change things if it's there." I was due for one anyway and lucky for me this one was better than the one I had a few years ago. No polyps, just healthy.

Unfortunately the cancer thing will be with us and jangle our nerves when we least expect it.

Unread 09-25-2009, 06:42 AM
Re: Now I'm at risk for colon cancer!!!

I will say a prayer for all you ladies that everything will work itself out. God bless all the hystersisters!
Unread 09-25-2009, 08:12 AM
Re: Now I'm at risk for colon cancer!!!

I think if it will help with your peace of mind you should go ahead with the HNPCC test. But I think you should be aware that the majority of colon cancer is of the non hereditary type (I've seen this estimated at between 80-95%). Moreover, a single second degree relative (which is what a grandfather is) with a particular form of cancer doesn't, statistically speaking, increase your risks of that form of cancer. A parent or a brother or sister does but a single grandparent doesn't. If there isn't any colon cancer in your grandfather's children or other grandchildren, this reduces the chances that you or your grandfather carry an HNPCC mutation. Thirdly, I think you should also be aware that interpretation of the genetic test can be uncertain. There are a number of reported mutations in the HNPCC gene whose effect on cancer risk is completely unknown.
Unread 09-26-2009, 04:54 AM
Re: Now I'm at risk for colon cancer!!!


First, a colonoscopy is a good idea, particulary if you are 50 or above.

However, as a confirmed HNPCC person, I will tell you that you have gotten some misinformation from your doctor (not unusual; I have had to educate gynecologists and general practitioners about HNPCC).

HNPCC is evident in Early colon cancers (people under 40/45, and/or have one or more relatives IN THE SAME GENERATION (brothers, sisters, cousins) who have had colon cancer and/or have had females in the family who have had uterine, bladder, or ovarian cancer under age 50 and/or any member in the family who has had multiple primary cancers at the same time, at an early age.

At age 70, colon cancer is just something that your grandfather got, unless his brothers, sisters or cousins also had colon cancer or had the other risk factors. It also depends on how young you are -- under 50, there might be a chance (particularly if you are one of the older members of your generation in the family), but it is slim.

For me and my family it was a no-brainer for testing: I had had two brothers with colon cancer already diagnosed under age 40, a female cousin who had endometrial and bladder cancer at the same time under age 50, and another female cousin who had endometrial cancer at 44. When I was diagnosed with multiple primary cancers at age 48 we went ahead and tested me because my insurance would pay for it and for the sake of the younger generations in our family, so that they would be offered regular colonoscopies and know what to watch for.

HNPCC testing is extremely expensive ($2000-$4000) for the first person getting tested in a family because testing has to be done for all 4 sets of genes that can cause the genetic defect. Once the genes have been determined, testing is usually reduced to about $400 a person, since they know which genes to test for. Many insurance companies will not pay for it.

So most doctors and genetic facilities, unless they see the risk patterns in a family, will recommend not getting tested, but if one family member has had colon cancer, and then an early endo/bladder/ovarian cancer shows, to get regular colonoscopies.
Unread 09-26-2009, 04:07 PM
Re: Now I'm at risk for colon cancer!!!

Wow! Thank you everyone for the great information. I am much calmer now than when I first posted this thread thanks to you. I have a great gyn/surgeon (she did save my life). She does a million of these procedures every week, so I think she might be numb to the fact that we women hold on to every word our doctors say. When she said I had a greater risk of developing colon cancer it sent me for a loop. By the time I thought of questions to ask her I was already in my car driving home. I did have a flexible sigmoidoscopy a year ago and the doctor said my colon was "so clean, we should post the results on Youtube" (how lovely!). Still, I have an appointment with a gastroenterologist in a couple months, just to make sure that I'm doing everything I need to be doing. For now, I guess I'm cancer free and that's a great thing, but I will never be able to live with the secure feeling that cancer only happens to the other guy. I sure do miss that feeling.

Thank you again to everyone who responded. You really did a good deed for me and you are truly special people.
Unread 10-10-2009, 08:41 AM
Re: Now I'm at risk for colon cancer!!!

My doctor also gave me information on getting the screening done. It does scare me. I have a checkup this week and I am going to ask him if I should have a colonscopy done. He not once mentioned I should have it done, just the genetic testing done....It's like Cancer just opens up all new possibilities and it is frightening..
Unread 10-10-2009, 07:58 PM
Re: Now I'm at risk for colon cancer!!!

My oncologist told me that sometimes he will see colon cancer in women who have had endo cancer. I too had stage 1 and no further treatment wsa needed. A colonoscopy was part of my pre-op tests. I'm 52 and kept putting it off. I was very nervous also and almost didn't have it, but glad I did. Everything was fine and it did put my mind to rest. Now I need to get my DH to get his. Oh, and the cancer fairy is with me sometimes, every little ache and pain, getting my quarterly pap. Try to stay positive, if you can. I know its hard.

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