frogspawn
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It is great to hear your positivive thoughts. I will pass them on to my bro and his wife. Case conference should be this week…apparently they hope to do a hemicolectomy before Christmas.
Thanks again.
F
Here is an interesting article from the UK which talks about the impact of invasive biopsies before attempted liver resection. The authors of this letter seem to suggest that invasive diagnostic techniques reduce the chances of success when the liver is resected. I would imagine that this is for the same reasons that Kris has mentioned….
http://www.bmj.com/cgi/content/full/329/7473/1045-c
Apparently this is the matter of some debate in the BMJ (British Medical Journal)
It is notable because it is trying to cover the different elements of treatment and care… and importantly makes comments on how reliable the underlying research is… Of course research is always ongoing but it is a good starting point i think….
What it really highlights for me is how much they don’t know about it… which is slightly worrying… but encouraging that at least somebody is trying to draw the different strands together…
Hi ToniaK…sorry we meet under these circumstances. The club that no one wants to belong to…
As long as your Grandma has got all the information that she needs to hand…who can say that a decsion to progress is right or wrong… i’ve questioned in my mind the situations of two of my own family members who made very different decisions…one to carry on and the other…not. They were both medically qualified but came up with different answers when facing exactly the same disease with the same prognosis.
Either way… the decision is difficult for her, you and the other family members involved and i feel terribly sad for all of you at this very difficult time. Just try to stay strong and supportive and help her through this…whatever the outcome.
As others on this site have pointed out to me (in relation to my situation)you honor your Grandmother by respecting whatever decision it is that she has made.
Good luck…
Frogspawn
Marions piece of info on genomics looks interesting so i think i will have a look into that as well!
I’m up for it! All the time services are disjointed and fragmented people with cc are going to suffer.
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???
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 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.
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
My Dad used to take those meal in a drink things… i tried one. They taste like they have got lots of iron in them…yuck!
Would be good if we could get a doctor to do a post on the genetics side of things. I am trying to get somone in the UK to do something…i’ll let you know how i get on…
(Your mention of the nuclear testing is something i’ve not heard of before…but i noticed someone else mentioned it on this site as well) Thanks for the info as will definitely investigate! Thanks.
