Genetics – The elephant in the room???
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Very interesting discussion going on here! Thanks to all for sharing!
My Dad, who was recently diagnosed with unresectable intrahepatic cc (Nov.3), is a 5-year colon cancer survivor. I also question the potential impact of environmental factors. My husband’s grandfather (also local) died of cc in 98′ (long time farmer), and another gal on the board just lost her husband to cc (about 20 miles up the road). This region in our town of upstate NY is proving to be a an ‘unofficial’, cancer cluster- including cancers of all kinds.-Tess
I do have a colonoscopy and other check ups regularly . All of this cancer business and discussion has put a nagging into my head to go to the doctor for a once-over in the near future.
My question is: are there certain blood tests that I should ask for? tumor markers, etc?
Robyn… I think Torre Muir syndrome is probably an old term… i think that my families problem is probably classified now as Lynch Type II syndrome… I think that a number of these syndromes actually involve mutations in a number of the same “mismatch repair” genes that mean that mutated cells aren’t repaired by the body as they should be. My surviving brother is a carrier of the gene as is my sister. Apparently the genetic condition is autosomal dominant which means that each child of a carrier has a fifty fifty chance of inheriting… I pray for a negative test for your mum but the strength to bear a positive one.
As suzanne and walk have mentioned maybe there could be an environmental component that can trigger the gene fault…’
Walk, if i was your sibling, with a family history like that, i’d be down to the doctors for a colonoscopy (i’m not a doctor by the way!)
Suzannegm wrote:Hi Frogspawn,
Interesting that you should bring this up. the gastrointerologist I saw at Emory Crawford Long is interested in the genectics side of things. He was interested that my father had been exposed to asbestos in the 1950’s while he was in the Navy. My father died in 2000 from mesothelioma. Dr. Martinez said it would not be improbable that there was a connection if my Dad’s DNA had been altered by his exposure to asbestos (I was born in 1965).
However, as a child I also played in creeks and streams that were more than likely contaminated with PCB’s. I have not pursued this though.
Is there any history of asbestos exposure in either of your parents?Holy Cow! I could have written this! My grandfather died of lung cancer in 1986 believed to be caused by asbestos exposure. Of his 7 children, 4 (maybe 5, not sure on 1) have been diagnosed with cancer. Three of those have passed away as a result. My father survived colon cancer in 1995 and was diagnosed with CC in late October. Of his remaining 3 siblings, one is in her 80s and appears to have dodged it, the other is the youngest, and okay so far and the one I am unsure, but I think he has had malignant colon or bladder polyps removed.
I have a number of digestive problems: had my appendix removed and my gall bladder removed and still suffer from pain that has been tentatively diagnosed as biliary dyskinesia. My only sibling has irritable bowel syndrome.
I have long thought, as many on here do, that some folks’ cells have a propensity to mutate to cancer and others do not. I guess two people could be exposed to exactly the same thing and have different outcomes.
I HATE this disease.
When my mom was seen at MD Anderson for cc, they sent her for genetic counceling. My maternal grandmother had pre-cancerous polyps in her colon, and Her mother died of colon cancer. They told us that the family may have Lynch Syndrome. This gene mutation causes colon, liver, cc, and ovarian cancers. They are testing her biopsy slides for this. We should know more when she goes back to Houston in January.
My husband was diagnosed with cc and then when they attempted the whipple procedure they found another tumor on the pancreas that didn’t show up in any of the tests. He has 3 people on his mothers side that died of pancreatic cancer. His doctor has said that it’s probably genetic for my husband. It’s definitely a subject that should be researched and talked about.
Marions piece of info on genomics looks interesting so i think i will have a look into that as well!
Thanks Jules
If you don’t mind me asking did they offer you genetic screening? IT would be interesting to hear from you the rationale for their dismissive attitude…(if you feel you can share).
In the UK they have a laborious preparation process before they will actually do the test… they want to make sure that you don’t have any mental health issues if you are found to have a genetic predisposition.
I believe both my surviving brother and sister have got “The Dodgy Gene” and some of their children… so they are taking the necessary precautions and getting involved in screening programmes… though for some reason they seem to want to focus colonoscopies, gastroscopies rather than anything else…
I have seen a Swiss piece of research conducted on Torre Muir Syndrome… which looked at genetics. IT was quite interesting because they downplayed the incidence of cc… i tried to get them to think a little more about it but don’t know if that had any impact… IF you can add anything on what you have seen that would be good.
One other thing i have noticed is that Surgeons don’t seem to be that interested in the genetics side of things… have you noticed that???
frogspawn,
I think you are onto something here. My Dad’s uncle died from ‘liver’ cancer. That was some time ago, and the circumstances are vague, I’m guessing it was cc. (My Dad died from cc 23/9/2007)
I went to my gp about this and I was referred to a genetic consultant who was dismissive. I do not feel reassured. So little is known about this disease how can they be so sure?
I did come across a clinical trial in Switzerland asking for blood relatives of cc patients to trial some type of screening – If I recall correctly it involved taking samples of the cells lining the bile duct for testing – I think it was called brush cytology – or something like that.. I will try to dig it out.
surely if we are wanting to make some progress towards a cure/early diagnosis then this needs to be taken seriously. Thankyou for your informative postings on this subject.
Hi Iris
Good to hear that the fight goes on! Your hubby and his family (yourself included) look like you have suffered a lot.
When the metastses spread it is quite upsetting isn’t it? The coughing is so distressing…you wish you could do something to help them cope! My brother had them in the bottom of his lungs too.
I think you should say to your kids that even if they dont want to change their diets…at least it could help with sccreening..getting things early would help especcially with cc and help them prolong the lives they are enjoying!!
Glad you tried though…good on you!
Hi everyone,
The discussion of CC being hereditary is an interesting one. But also a subject that didnot have enough research yet. A lot of oncologists in Holland think the chance of getting cancer might be hereditary. And I tend to agree, looking at my husbands background. His mother kicked off two different types of cancer, before she died on asbestos cancer. Both her brothers died on prostate cancer and two of their sons also had cancer.
On the other hand, what can one do with this knowledge? Not much, I believe. Talking to our oldest son about this and trying to get him to eat healthier, he answered with a smile “I rather live 60 years with a lot of fun, than 80 years with a lot of restrictions”. As you might guess, he is a junkfood eater.
Anyway, on our anti-cancer diet my Peter is doing quite well. We will have the results of today’s bloodtest on Wednesday. The last bloodtest was not an improvement, but also not worse. The coughing (metastases to the lungs) remains.
Wishing you all the best, Iris.Hi Lisa…thanks for your post.
The fact that they are different types of cancers does not necessarily mean that it is not genetic. Faulty mismatch repair genes are assocaited with lots of different types of cancers including GI, hepato billiary, colon, urinary…see figures above.
As far as genetics go, I’m the only one in my extended family to have any GI cancer. There is breast cancer in the maternal side of my family, so I always figured I’d be fighting that eventually.
Thanks Frogspawn.
I do appreciate your kind words & support. Everyone here is so helpful & caring. We are all going through this in different ways & need all the help & support we can get. I am hoping I can also help others that come here as, unfortunately, I now can honestly say that I know what they are going through as so am I. I will keep checking into the genetic side of this. Thanks for the info.
Darla
Darla i saw your post in the introductions section. So desperately sad. I know you will feel like you have been robbed. I want you to know that i am thinking of you right now and praying for help for you to get through the bad feelings you will be going through at the moment.
There are a number of people on this site who look like they have some king of familial cancer issue. There are some good explanantions on the publicly available health sites… medline… cancer.net. etc about the different possible genetic conditions.
In the UK we have regional genetics centres with genetics counsellors though you have to be referred to them by a GP or other consultant. There are some criteria called the amsterdam criteria that they use to decide whether it is worth doing a genetic test. I think they have something similar in the US…?
Frogspawn
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