Venting after a couple of Doc visits...

[concernedrelative]

Why oh why do Docs repeat the "keep the faith and stay strong..." meme? My wife was told yesterday, "you are young, keep pushing, try numerous different trials if available, you would be surprised how much worse the lungs can get before the situation gets serious...I know younger people can live many more years by mixing treatments up". This is as we enter the experimental, clinical trials phase. Needless to say this type of comment makes no mention of the status of the primary, chance for invasion of other organs, growth rate of the tumours, etc.

As for my wife, she is doing the very best she can and as courageously as possible. If we are unable to find experimental treatments that stabilize her tumour burden, it is not for lack of perseverance on her part. This rant should probably be on the "stupid things people say" thread but then I would be too harsh. Arghhh.... Concerned Relative

[concernedrelative]

As an aside, we were told once again that clinicians are seeing an epidemic from low levels of young women, totally asymptomatic being diagnosed with latter stage CRC. One day we will find the culprit--in our food supply? in our water?

[hannahw]

I'm with you in terms of what I don't want to hear from the doc, but in reading this board I've found there are plenty of people who do want to hear it. It's just one of those "different strokes for different folks" kind of things. Why does it seem to be the default? These conversations are always difficult, so I think docs tend to rely on the statements they're most comfortable with and/or what they've been conditioned to believe are the statements that will be well received by the majority of patients. The alternative could be deemed too negative. Patients sometimes feel the doc is giving up on them if something like "stay strong" isn't said.

In my experience, the best thing to do if you don't like the way the doc communicates with you, tell him. No one benefits from him saying something and you going home frustrated because he didn't meet your communication needs. It's not unreasonable to say something like "hey, 'stay strong' doesn't really work for us because it makes is feel like..." Even better if you can give the doc a sense of what does work for you.

[janklo]

I am going to agree with you - there is something different about our diet or our environment that I feel is causing an epidemic of cancer. I know so many people who have cancer right now! I cannot remember this being the case before. My therapist says I'm just more aware of it, but I don't think that's it. I do think that my daughter's diet of Pepsi, cookies and fast food probably contributed to her condition. She did not have any symptoms at all until severe abdominal pain and vomiting. Of course she wouldn't have had a routine colonoscopy at age 25. I think it's the preservatives in our food supply. I buy only organic foods now, I feel that's one thing we can do.

It's very hard to deal when the cancer starts to get control - but don't ever give up, keep trying all methods you can. There's new meds and treatments discovered all the time. Just hang in there!

[juliej]

As an aside, we were told once again that clinicians are seeing an epidemic from low levels of young women, totally asymptomatic being diagnosed with latter stage CRC. One day we will find the culprit--in our food supply? in our water?

I fit right in with that group. Unlike janklo's daughter (Lauren), I ate primarily organic food (except when traveling). I ran, hiked, biked, etc., so fitness wasn't an issue. I have no family history of any kind of cancer. My docs repeatedly told me I couldn't have CRC because I didn't have the right symptoms. I think something is going on, but what? I only know that my case discourages some of my friends -- they feel like if I could get CRC, anyone could, so what's the point of eating well and exercising.

About doctors repeating the "keep the faith and stay strong" meme -- I think they often don't know what to say to a younger person. The fact is anyone who is diagnosed with Stage IV cancer at a young age got dealt a very bad hand. That is all there is to it. There are very few cancers that “old age” isn’t the number one risk factor. I would love if a doctor said that just once to me.

Sending love, light, and positivity to you and your wife,
Julie

[hannahw]

It's interesting, plenty of people eat terribly and don't get CRC while some people do all the "right" things and do get CRC, go figure. Given the ever expanding number of toxins we encounter in our daily lives, it seems like there are a lot of potential culprits to choose from. Also, I don't think researchers know the whole story on the genetic component. There may be genetic links that make certain people more susceptible that we are yet unaware of. And there may be genetic links that confer some sort of protection on certain people. So, maybe it's a bit like a math equation where it takes more than one factor. It could be that you need to lack a certain protective gene AND encounter a particular toxin. Maybe one alone isn't enough but put the two together and it's trouble.

[rp1954]

Personally I am suspicious of the ongoing vitamin D3 deficiency plague or other vitamins and minerals, combined with multiple hormonal assaults, excess weight and sugar/diabetes. I don't think we have an error free "good diet" definition, much less implementation. Also some of the food additives, including synthetic folic acid may be problematic.