I know that you have genetic colon ca, if my memory serves me correctly, and I wanted to ask you, is it FAP? Can you refresh my memory on your hx and family hx, I have some questions I want to ask you regarding my current treatment plan and things I should possibly consider when seeing the geneticist next week-had to reschedule from this week-chemo got me down.
TIA for any info,
Christy
My cancer was probably HNPCC. It had high microsatellite instability and was located in the upper right ascending colon, which are characteristics of a hereditary cc. I have been undergoing genetic testing and so far have tested negative for all the usual mutations. Next test is PMS2 which is not available commercially but only as part of a research study. My geneticist has stated that it is possible to have HNPCC but not find the specific mutation as it has yet to be discovered. Family history included father with Pancreatic Cancer, parotid cancer, paternal grandmother colon cancer, paternal aunt renal liposarcoma and myself endometrial cancer prior to age 50, then colon cancer at 57. I had only one polyp the sessile one that was cancerous. Someone with FAP has literally hundreds of polyps in the intestinal tract.
The study I referred to in a prior note to you said that for HNPCC treatment with 5FU and Leucovorin didn't make a statistical difference. However, the newer treatments have not been around long enough to know if they will make a difference. I know that Oxaliplaten is a platinum chemo drug in the same family as Cisplaten which has been associated with leukemia/lymphoma 15-20 years after treatment. But it is a catch 22 if you don't do the chemo - the cancer could re-emerge, if you do and it is successful, then there is a small possibility that many years down the road a second unrelated cancer secondary to the chemo treatment might occur - but at least a person would have gotten quite a few more healthy years before having to worry about a new battle. As a stage II survivor, that odds are still stacked greatly in your favor even if you do nothing. but of course you are a person not a statistic.
I am believed to have a genetic mutation as well. My father passed away from cc in his 40's and my sister passed away from cc at the age of 28. I am 35, and have had 6 colonoscopies, which all of them I have had polyps. In July 2005, I had a polyp that was precancerous. Recently, I went to see a genetic counselor, and she believes (from my pathology reports and family history) that I may have AFAP, which stands for Attenuated FAP. Its similar to FAP, but you don't have as many polyps as with FAP. Last Friday, I had my genetic test done (it'll take about 4 to 6 weeks) for my results. Depending on my results, it will help me monitor my annual care, i.e, yearly colonoscopies or having my colon removed.
I was diagnosed with rectal cancer in March 04. I also was dx with DCIS (Ductal carcinoma in-situ)n in my left breast.
Due to a strong family history of colorectal cancer in my family I was asked to have genetic testing done. A comprehensive test to fully 'sequence' the MSH2 gene was done. It was determined that I do carry a mutation in the MSH2 gene. The presence of this MSH2 gene alteration confirmed my diagnosis of HNCPP.
My rectal cancer was dx very early and I did not need chemo, I had surgery and an illeostomy was done. This was reversed 13 weeks after the initial surgery. I also had a mastectomy.
Unfortunately 18 months later I developed 2 other primary cancers in the uterus and tube. I had a complete hysterectomy and 6 chemo treatments. The cancers were both primary and both staged at 1A. I was very lucky.
I now know that the second most common cancer in female MSH2 gene carriers is cancer of the uterus (40-60%) and the risk for ovarian cancer is estimated at about a 12% lifetime risk. Both much higher than the general population.
If I had known this information I would have asked for the hysterectomy at the time of my colon surgery. If that surgery was perfromed I would not have developed two new cancers.
Anyone with HNCPP (Lynch syndrome) should seriously discuss with their doctors the risks of developing other cancers. Colon cancer seems to present first then there is a strong possibility of developing others.
If you don't mind how old are you? I was told I have a 60% chance of developing endometrial cancer and am considering undergoing an elective hysterectomy, I should have my genetics tests confirmed in a few weeks.
Secondly, how did you find out about the cancer in your tube and uterus? As I know they're both hard to detect. I am going to see an oncologist gyno guy at WHC soon, because I went to my doc in April for a cyst on my right ovary and was supposed to have it followed up on soon, well, I am having intermidant pain on both sides like a cyst, but I dont think it's that, I think that cyst popped, but I am having pain while having intercourse and some occassional discharge.
I asked my ob because of my hx to do an endometrial bx and CA-125, and transvag u/s which is suggested for HNPCC patients as a screening, she refused, she stated it wasn't necessary. People with HNPCC should have this done starting at 25-30 years old and hysterectomies are recommended for people after child bearing years, I have no children, but my partner will carry ours should that happen.
So did you have your total colon removed then? I did, they ressected the ileum from the small intestine to the rectum, I did not have to have a bag.
I am 49. I was dx with breast ca at 46, colon 47, uturine & tube 48. Ihad a lower resection and I had a bag for 13 weeks.
After the mastectomy my oncologist put me on tamoxifen as the type of cancer cells in the breast were estrogen positive. The drug tamoxifen is given to help prevent a second cancer of the breast. This is a good drug but it can also cause uterine cancer. As it turns out after genetic testing I would have probably ended up with uterine Ca no matter what I took. But if I had known I had HNCPP I would have had a hyst when I had the colon surgery.
I had a biopsy done 8 months after starting the drug. It was June 05, the pathology showed irregular cells in the uterus , no cancer. My oncologist suggested a hyst because of the HNCPP to be on the safe side. I had the hyst and the first biposy was clear of cancer. 3 weeks later I was told the pathologist had relooked and there was cancer in both the uterus and tube.
I was lucky and it was detected early 1A. I was told the uterin cancer would probably never bother me again , but the tubual cancer is like ovarian and I needed chemo and to watch it very carefully.
Christy if I was you I would find a doctor who takes HNCPP seriously. The chances are high of another cancer, I am proof of that. How old are you and are you in Canada/USA? I now beleive that early detection or prevention is one of the keys for beating this dreaded disease.
Sorry you are having such trouble with your chemo. As far as endometrial cancer goes, don't let them poo poo it without giving you the proper tests. The actress Fran Drescher from the tv show The Nanny, went from doctor to doctor ( I believe she had 7 or 8 consults) for over a year before she was finally given the test that should have been done when her complaints first started - an endometrial biopsy which showed that her complaints were not stress, depression, overwork, etc. but cancer and that she was not too young to develop endometrial cancer. She wrote a very interesting book about her journey to get a diagnosis I forget what it's called but you could check on Amazon or google her name.
As far as symptoms go, for several months prior to my endometrial diagnosis, I had noticed that my vaginal discharge had gotten darker was was very pale tan-brownish, rather than its normal clear color. I didn't think anything of it at the time, but afterwards found out that that is one of the tell-tale symptoms. Also being 1 1/2 years post menopause, the occasional spotting was a red flag as was the breast swelling, crampiness and feeling of an iminent period. For women who are still getting their periods, it must be awfully hard to detect. If I had still been in peri-menopause I would have shrugged it aside and ignored it.
Be persistent until you get an answer to your pelvic pain and symptoms.
I have what is most likely HNPCC, and the gynocolgist I've been seeing is at my cancer center as well (mskcc). He said that when I turn 30 (I'm 28 now) I'll need to start being screened extra carefully for uterine/overian cancers, including biopsies, ultrasounds, sonograms and something else....hm...
I only had my rectum removed, but if I have a recurrance, I'm just going to get my entire colon taken out. For the time being I decided not to have a hysterectomy, but am definately going to revisit that decision in the future.
