Wondering what to do now...

[Guest]

Greetings everyone. I only heard about this site last week!

My name is Kimmy. I'm 34 and I was diagnosed with stage III colon cancer 5 years ago...when my son was 1 1/2. I have a long story.

I had been having stomach pains beginning about 8 months after my son was born. I was uninsured but had been seeing a doctor at my university's student health center. He treated me for IBS and later said it was probably anxiety and gave me Zoloft. Then later still he said I was too young for colon cancer and eschewed a resident's advice that I get a colonoscopy even though my mother had been diagnosed with it in her 40's and her father and 2 uncles all died from colon cancer while in their 50's.

I lost a lot of weight and was dizzy all the time. At a family function my father realized something was wrong and offered to pay for me to see a specialist. Within moments of being in the gastroenterologist's office, I was told I would need a double blood transfusion before they could perform any scoping.

After the transfusions, they scoped my stomach and found nothing. Two days later I had a colonscopy and was rushed to surgery 30 minutes after the procedure. Apparently, my colon had less than a pencil's width of space for food to pass through. When I awoke they told me they had removed a very large mass, a good portion of my colon and my ilioischial valve.

The pathology reports indicated that 3 of the 7 nodes were malignant the cancer had not penetrated the colon wall.

A month later I began chemo. Xeloda and Camptosar. This entire time I have no insurance and no real say in my treatment other than to thank everyone profusely. The chemo was intense and lasted 6 months.

I don't know if I got the best treatment. i don't know what everything that happened means for me in the future.

*Good news sprinkled in* I had a daughter 2 years ago. I gave birth to her at home, which was incredible.

My mother called me today to tell me that her colonoscopy didn't go well. Her doc found two large polyps. He wants her to have another colectomy. She is 12 years out from her first diagnosis.

All of this makes me wonder....what can I do to stay alive? I've been so busy with family life that it has been easy to pretend that colon cancer is behind me but I secretly worry that it is just a matter of time. How do I make sure I'm getting sound medical advice when I've yet to meet a doc I trust?

Anyone have a good book to recommend? Words of advice ?

Sincerely~
Kimmy in Richmond, VA <---whose children have decided I've been typing long enough

[tpop]

Kimmy-I too have a family history of colon cancer. I am a six year survivor of colon cancer and five year survivor of uterine cancer. I was diagnosed at 46 and 47 with these cancers. Fortunately they have been able to identify the hereditary gene in the family and my daughters are able to be tested. Have they suggested you be tested? We have a genetic condition called Hereditary Nonpolyposis Colon Cancer, where multiple members are affected. There are screening guidelines for this syndrome for colon cancer and the extra-colonic cancers as well. The recommendations are: colonoscopy every year,pap every year,CA-125 every year, transvaginal ultrasound every 1-2 yrs, upper endoscopy every 1-2 yrs and urine cytology every year. I, too am worried about the recurrence of either of my cancers. I think it is something that is always in the back of our mind. My oncologist said if I were to have another cancer in my colon, the recommendation would be to remove the entire colon. YIKES!!! Have faith...keep positive.
Many blessings, tpop

[Magnolia]

tpop's advice sounds good. Regular follow-up is the key. Recurrance of the old cancer is unlikely at this point, but development of a new cancer is possible, especially if you have the HNPCC gene. Monitoring of all the at-risk organ systems, and early diagnosis of a new cancer are your best assurances of successful treatment. Your original cancer may be behind you, but life as a cancer survivor includes meticulous follow-up.

Best of luck to you and your Mom.

[kimmy_c]

Thanks so much for the words of wisdom and support. After calming down a bit and talking with my bestfriend (who is also a pathologist) , I feel less panic-stricken

I've wanted to have the genetic testing but have not been able to afford it. My doc has said that knowing whether or not I have the gene wouldn't change his course of care. which has been yearly colonoscopy and PAP and ultrasounding. He also suggested that I have a mammogram this year. However, I would like to have the testing done for the sake of my children.

Truly, "meticulous" follow up is the key.

many thanks~
Kimmy

[tpop]

Kimmy-Have you checked in to the possibility of your insurance paying for the testing? I know it paid for mine and also for many of my family members. (Although a few were on Medicare). Have you consulted with a genetic counselor? You are doing all the surveillance that is recommended. But I agree that for your children's sake it would be good to know. Actually, the test I had done back in 2001 came back negative.
Although the drs. felt it was false. Now they are able to identify the deletion and my Dad tested positive. (He had a cancerous polyp removed a year before my colon cancer). So I didn't feel the need to repeat the test. I knew because of the two cancers that I, too, had inhereted the gene.
The best we can do is follow the recommendations and be aware of our bodies.
You and your mom are in my prayers,
tpop