Saturday, September 18, 2010

Lynch syndrome

Hi everyone
Well there just always seems to be something ELSE..... I am SOO frustrated, I went into all of this as a healthy person, an extremely healthy person. ...... well except for the cancer part. I get sooo upset that I seem to be getting further and further away from being healthy, yet I feel I have no right to complain, knowing that so many others have died of the cancer.
I had a very down day yesterday, Ken and I went to a cardiology conference (great conference by the way). Part of the program is that they have a cholesterol panel testing before the conference starts for any interested docs. Since I have not had that checked since before my surgery (at that time the anaesthetist commented that I had "an enviable cholesterol panel". Well not anymore. Despite following a low fat, low cholesterol, mostly vegetarian diet for 30 years (since my mother had a heart attack at the age of 52), my LDL is substantially elevated.
I am going to have to look into my mothers records, but she had a familial form of cholesterol problem, her father died when she was a teenager of a heart attack as did his father, (her grandfather). I guess I will need to be looking further into this. The suggestion at the conference was to follow a low fat diet, eat less animal products and lose weight.

That all being said, there may be yet another familial disorder I have inherited that may have caused my cancer. It seemed odd when my cancer was diagnosed, that my sister (3 years younger) had just had a hysterectomy for complex atypical hyperplasia, which is the precurser to the cancer that I had. I was sent for genetic counselling because my mother and grandmother both had breast cancer. Since both breast cancers occurred at an elderly age, and endometrial cancer is only weakly linked to breast cancer, no testing was done.
There is another syndrome called the lynch syndrome in which a family tends to have endometrial cancer AND colon cancers. The counsellor did not think there was enough of a tie here either.
I have a first cousin who died last year at the age of 43 of colon cancer. He was diagnosed around the age of 40. From the reading I have done (I learned a lot about lynch syndrome from the hystersister forum where several of the girls there have lynch syndrome as part of their endometrial cancer) I have found out that if a family has one member who develops colon cancer or endo cancer at a young age (under the age of 50), and there are two other cases in the same family who are siblings then this family could be a lynch syndrome family.
I guess the thing that got me looking into this, is that I only just found out this year that the colonoscopy I had in Bandon last year, a certain kind of polyp was found that is also linked to this familial syndrome. It was a villous adenoma, which is a precancer and of the type that tends to occur with lynch syndrome. I guess the thing I only just found out recently (my family never tells me anything), my sister Denise, the same one who had the endometrial precancer, had a colonoscopy earlier this year and they removed a precancerous polyp.
I guess I was just blown away that Denise and I both had precancer/cancer of the endometrium, and we both had precancer of the colon.
The other cancers associated with this syndrome are ovarian, upper urologic tract, gastric, small bowel, biliary/pancreatic, skin (sebaceous adenomas and carcinomas and keratoacanthomas), and brain cancers.
As in most other familial cancer syndromes, early age of onset and multiplicity of cancers have been considered hallmarks of Lynch syndrome. In registry-based Lynch syndrome series, the mean age at initial colorectal cancer diagnosis is about 45 years, compared to around age 65 for sporadic colorectal cancer, and some Lynch syndrome patients present with colorectal cancer in their twenties. Similarly, the mean age of uterine cancer in Lynch syndrome is about 50 years, which is about 10 years younger than the average age of sporadic uterine cancer.
My endometrial cancer was diagnosed when I was 52, but I had clearly had it for some time. My doctor felt it was a very young age to develop endometrial cancer, and my sister would have been approx 49 when she was diagnosed. Neither of us had any risk factors for it either.

Although it has been years since I have done genetics, this syndrome is inherited as an autosomal dominant, which I believe means that 50% of a carrier's offspring would inherit lynch syndrome, and of those 80% would develop cancer, most likely endometrial, or colon cancer.
I contacted my uncle (the father of my cousin Steve) to find out if he knew anymore about other family members with cancer. Turns out 2 of my female cousins, for two different families died of small cell cancer of the lung last year, but they were heavy smokers and this cancer is associated with that. Also one of my fathers Aunts died of cancer of the stomach, or something like that. The other thing I found out was that with Lynch syndrome the cancers/polyps of the colon tend to be more proximal, which means further up. My cousins cancer was pretty much as high as you can get in the colon, and my polyp and my sisters were also high up. The types of polyps that are more likely to be associated with Lynch syndrome are villous adenomas and dysplastic adenomas. (Mine was villous, and my sisters was dysplastic)
Anyways I thought this might be of interest in case any readers have family members with colon cancer at a young age.

Other news, I am scheduled for gastroscopy Tuesday morning. I have had stomach pain and heartburn for 2 months now, despite taking a double dose of two different OTC stomach meds, omeprazole and quiting caffeine. I did have a gastroscopy a year ago in Bandon, but that test was not documented well, and from it, it is hard to tell where any of the biopsies came from as the notes say they were taken from the esophagus, but the pathology describes them as gastric tissue. So my gastroenterologist wanted to see what is going on now ( a two week course of one med regular dose SHOULD clear up any gastritis, esophagus problems)
Then on Thursday we are going to Portland to meet with the hyperbaric doctor hopefully to begin the hyperbarics at the higher pressure ASAP. I have been bleeding much more extensively and though my hemoglobin is still in normal range, it is dropping with each reading and my red blood cells have been below normal for awhile and are also dropping with each test.
The gastroenterologist really wanted to start treating my bleeding with laser this wednesday, (he said it would likely take several treatments to treat the large area involved), but I really want to hold out to see if I can get a cure with the hyperbarics. I am very anxious to begin treatments, because I am very anxious to see if it is going to work. The gastroenterologist said the
I guess the other reason I am looking at going to portland instead of waiting until the unit opens here in Eugene, is that while they are checking my credentials for this job I am waiting to find out, I might as well get treated, rather than start treatment at the time they may just want me to begin work.

On top of all of this, I was diagnosed with osteoporosis last november, and it was suggested I go on medications for that, with all that has happened with my stomach etc, I was afraid to, so I will likely get that looked at again, and try to find a better way to treat it, if I do actually have it.

I am SOOO Looking forward to being healthy again. Perhaps I am asking too much

by for now
jankenb @


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    I didn't know the things you just shared, so it is good information for me to look into myself.

    Blessings to you!

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