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Worried about my "Daddy"

madismamaw
Posts: 5
Joined: Apr 2004

Hello!

I usually post under OVCA site as I am preparing for biopies/surgery. However, I have a couple of questions about my father. First of all, my father is 75 yrs. old, (he is my rock!) he has had untreated diviticulitus for 26 years. I found out because he admitted that he had been in severe pain for six months and had been treating himself with "old" antibiotics. He evidently was hospitalized 26 years ago with this problem. He was told then he needed further tests and quite frankly never went back to doctor. I finally convinced him to see a doctor. Long story short: they found a "very large mass" in the rectosigmoid area on his colonoscopy and the doctor said he would have to have surgery to remove it. They did do 6 biopsies, results won't be back until Tuesday. He has an appointment also on Tuesday to schedule the surgery.

Although I am famililar with colon cancer because my mother was diagnosed with stage IIIC two years ago; I do have a few questions about my father. 1.) With the mass being in the area it is; what are the chances of him having a colostomy ? 2.) He has always refused to see doctors, and I am afraid this would possibly keep him from having the surgery, so any guidance regarding this colostomy would help. 3.) With a mother and father both with colon cancer; should we, the children consider the genetic testing for this cancer on top of having regular colonoscopies ? I did have a colonoscopy in April only because my GYN wanted to rule out any GI problems before they determined it was my ovaries. I had some polyps removed otherwise normal. Thanks for any help or advice you might have.

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

HI from OZ---due to the tumour being "low down " in the sigmoid region there is a fair chance that other areas around the tumour could be involved.My cancer was also low and I was told that the surgeon "may" need to leave me with a colostomy.
I was fortunate this was not the case although he did remove approx. 1/3 of my colon.
A mate of mine had the same dx but the cancer had invaded the rectum and anal areas--particularly soft tissue and muscles--so he got a "bag" and his anus was sewn up.
Now that was 18 years ago!!!!
To top that off back then he did NO chemo and is still healthy today.
So --you can see that all is not lost.
It really depends on how agressive the cancer is and just how invasive it is.
Mine went thru the bowel wall but I was fortunate that no lymph nodes were positive nor did the cancer invade anywhere else.
His surgeon should be able to give some idea of the extent of the cancer however, many times they tell you--we have to wait until the patient is operated on to see the extent of the damage.
Thats about all I can offer you.
Jen and I send our best wishes for you and your dad.
Try not to worry--hard to do, I know.But the waiting game many of us play--it is surely not easy.
luv, kanga n Jen

sallyjoy
Posts: 102
Joined: Apr 2004

So sorry to hear about your Father and the big C in your family. My hubby has stage 4 and so does his father. His father had to have an ostomy bag as his tumor was too close to his sphincter muscle.. He does just fine and has had it for over 10 yrs. You'd never know it to look at him... Now my hubby's tomor was in the sigmoid colon about 30cm inside. He did not have to have an ostomy bag. Either way the surgery is worth having and the quality of life is just fine from my perspective. Grandpa travels and does all the activities he always did...

As for the genetic testing. I'd go for it. My hubby talked with the onc. who also treats his father. Hubby also has colon cancer on moms side of the family (hubby's g-ma) so the onc. said they will be testing my hubby first to see if he has the C gene and then if he does, they will test all the children (4 boys) With or without the testing, the older boys ( age 15 & 19) are aware of the risks, and to be sure the younger ones will be told when they are old enough to understand (ages 5 & 10) I will absolutely be sure they are tested/screened early in life as hubby was dx at age 41 ... they typically say get children tested 10 years before the parent was dx, however hubbys father was dx at age 58 - thats 17 yrs difference. I have been told it is not too young to start screening for the 19 yr old.

Hope this helps some. hang in there. My thoughts and prayers for you and your family...
Sally Jo

taraHK
Posts: 1961
Joined: Aug 2003

Hi. I was diagnosed with cancer of the rectum. Even with that tumour location, most doctors/hospitals will try to avoid a permanent colostomy if at all possible. In my case, because my tumour was very low, I knew there was a high chance I would end up with a colostomy. However, the final decision was made during the surgery itself. Having a colostomy is certainly an adjustment but in my case it hasn't been that bad. I wish him all the best.
Tara

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy madismamaw -

Lots of goot advice here about ostomys. I don't have one so I won't comment save to say there are so many people out there who have one and live a rich, full life with it that I cannot fathom not having surgery for fear of ending up with one. Of course, the sooner that surgery is done, the better the cances of not having to have it - and there have been so many amazing advances in surgical and other threatment techniques these days. It's like night and day in the advances that have been made in just the last 5-10 years.

I will comment on genetic testing since I have genetic colon cancer (mine is called Hereditary Non-Polyposis Colo-rectal Cancer or "HNPCC").

I hate to disagree with sallyjo, but in my opinion - as one who had genetic testing done by the National Cancer Institute as part of the the Human Genome Project, and found to be positive for the gene - I'm not sure it's worth the cost and possible implications further down the road. Here's what I mean;

If you are tested and find you have the gene (assuming you are positive for the gene they are testing for - there are several), what will change in your life? Will you be more cautious about having a regular colonoscopy? Will you be more attuned to symptoms for colon cancer? With the prevalance of colon cancer in our society today, in addition to having both parents diagnosed with CC, you should be doing these things already. Genetic screening will not cure colon cancer. It merely gives you more reason to be doing the thigs you should be doing to combat the disease.

Next, what if you are tested for one type of genetic trait that you don't have, but you have another type of genetic trait that causes CC? You are tested negative and become complacent as to symptoms and 'scopes. Not good.

One of my concerns was insurance - what about being covered for a "pre-existing condition" - if you have a gene that predisposes you to CC, will your health insurance provider cover you if you develop cancer? That might be an arguable point.

Finally, there is a guilt issue that may have to be dealt with. Testing revealed that I inherited the trait from my mother. She was beside herself with guilt for something she had no control over. My sister didn't get the gene, but felt badly that I got it and she didn't.

In the past I have been a proponent of genetic testing, but I have started to rethink my position. I firmly believe that the more we know about our body, the better. I had the testing done because it helped out a greater cause and didn't cost me anything (the tests are astronomically expensive, costing hundreds to thousands of dollars). Hundreds to thousands of dollars for a test that will do little more than tell you that you have an elevated propensity for getting CC and you need to be good about your 'scopes and watch for symptoms. These are things you should do anyway - especially with a family history. Do the right thing anyway and you need not spend good money to compel you to "do the right thing" and possibly lead you down the path of complacency.

I know... long answer. Hopefully it was insightful.

Be well.

- SpongeBob

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Hon,
Try not to get to worked up over the ostomy thing. When it gets right down to it, it is not a big deal when you are faced with the alternative! I had a low tumor as well. They did not decide about the colostomy until they were doing the surgery. There is really no way of knowing for sure until the surgeon can aactually see the extent of the tumor. I did not have to have one but if the cancer comes back I was told there was no question that I would have one. I am not so concerned as long as I am living! Take heart, it will be tough but you will have to wait to find out. I will be thinking of you and your family.

All the Best,
Taunya

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