other peoples advice

What do you do/say when well meaning people give you advice about 'natural' cures, diets, etc.? What about the people who basically tell you the medical field/big pharma, ect. is out to steal and hide the 'real' cures because they won't make any money?

Donna

I tell them:  "if you get cancer you can try all that stuff but i'm a believer in modern medicine and I take my advice from my doctors....but thanks anyway."

or something like that .

ed

i wouldn't say anything. Smile and change topic.

It's so frustrating. I agree with most everyone. I do realize many times they mean well or just plain ignorant. I wish I had a great come back, but it's not me. The "he looks so good" (he can't be that sick), "people don't die from Pca", "bone cancer is very curable", to the you need to be on this diet, supplement, etc. many really care and think they're helping, but......

Serenity - I had a friend that wanted to get into the personal issues, especially regarding sexual issues and would make comments in front of my husband as if we had talked about it - we hadn't.

But as suggested - ignore is probably best.

I ask what is their evidence, and usually gently explain some basic biology and research methodology to them. For the paranoia about Big Pharma, I explain how there is more profit in a better cure, and how companies compete to sell the best ones. But for people who want to believe in magic and esoteric knowledge, I don't know if logic will ever convince them.

I would tell them that the five MOST DANGEROUS words in the English language are, "Maybe it will go away."

Then I would remind them that they are not qualified to make such statements.

Take care,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.

I tend to say to this particular person, "Arsenic and hemlock are 'natural', too; that doesn't mean I want to ingest it."

English Alf: Perfect! It is Friday after all.

Bohemond: Apparently, the apricot pits did work. Your neighbor moved, didn't he?

Jeff

I've had two pushed at me recently. One is that I must eliminate all sugar from my diet because that's what cancer feeds on. This was said in all earnestness, and by implication that if I didn't do that it would be my own fault if the cancer progresses. Please....

The other one was about some kind of foul tea that "saved" someone, pursued even though the doctors said not to, thus proving doctors don't know what they're doing.

Yikes.

I'm really new to this situation, but I usually reply with something like, "Well, that's interesting. I'll do some reading about it.".

Oh, I've also been told that I research way too much. Just let the doctors doctor and quit fussing about it. I've responded that the anti-intellectual position just doesn't work for me! I'm probably just becoming a well-educated idiot, but I do like to have some idea why the doctors suggest what they do.

What am I "chopped liver". I get no advice from friends, family or even strangers!

I agree in eating healthy and taking care of yourself (not that we do) because it helps us to recover sooner/easier. My problem is the "This is what you have to do to get the cure. Don't do ______ (what ever your doctors recommends) because they are (out to get you/destroy you/take all your money/fill in the blank)." So...there must be some major conspiracy going on for us to not hear about the many, many people who have been 'cured' from these horrid cancers. Funny thing is, if there is that big of a conspiracy going on, how on earth are they able to be found on the internet?!?! You 'know' the government is Big Brother and sees all.

Sorry...I'm mad and frustrated. I just wish people would be more sensitive and supportive. I hate having to be more careful, especially if it is a friend that I just agree to disagree with. I need support, not condemnation of why it is what it is.

I'm done ranting. Maybe I'm just more nervous than I care to admit.

Donna

Hi Donna, My brother-in-law in a naturopath who will not discuss his own potential for Pca, despite his younger brother (my husband) having had a diagnosis 6 years ago. He remains convinced that he has no risk due to his lifestyle, and so far has been lucky it seems. Unfortunately by default, he has implied in the past, that my husband was somehow responsible for his own condition - not an uncommon opinion but one I disagree with, so we avoid discussions about it now. We spent years trying to discuss it with him, and we shared books on the topic (Walsh) so he (B_I_L) is fully informed. He would not dare give us advice however!! As far as others are concerned, I have only had it once and that was from a complete stranger who told me he knew what caused cancer and therefore would never get it himself..... When he told me, based on some cultural habits of mine, I replied gently, "Mate, you know NOTHING. But like all of us, are entitled to believe what you like. However, I am so, so, glad I don't have to stand here and listen to your rubbish. All the best with your beliefs". Then I walked away. Yes, it was the early days, and yes, I was a "little" stressed at the time... so these sorts of comments can be a catalyst. I "took the bait" then as someone said earlier.... there is no need to do so, I recognise that now.

Avoiding any advice from uninformed others, is something my husband and I specifically strived for, by telling as few people as possible at the time, until we had a good all-round knowledge of the condition, which took about 4 years. Now we can both address with knowledge and evidence, most stupid claims people make, and then they tend to shut up when I am around! In the first instance, Donna, just smile and walk on, and try not to think about them. I can't thank people when they have said nothing helpful to me, but a smile always eases the tension. Then walk away. You don't need other people's advice and certainly do not need confrontation, discussion or argument with them. If people turn it into a political discussion of medications and their use, you don't have to participate. You are always entitled to say that you are not feeling like talking much, and would prefer not to discuss it right now, too... that tends to cause people to back-off. Then, avoid them. They will get the picture that you are a private person and will be less inclined to bring it up again.

Just a few ideas. There is one exception I think.... and that is recommendations from others who have actually had prostate cancer or their wives and partners who you may randomly come across. Then, I listen no matter what they recommend, and usually look it up. These people I thank, and we usually have a good discussion. If someone has no experience with the disease however, I don't listen or engage with them, unless I am doing all the talking!! Good luck.

I don't deny the power of the mind. Sometimes, some of us are able to will ourselves into states of mind in which we feel better than others and maybe even live longer than others. I can say from personal experience that I have a fairly high tolerance to pain, that I shrug off minor illnesses, that I think most things that make us sick cure themselves in a few days or a few weeks regardless of what, if anything, we do. Suck it up and carry on, that's me.

But I have no tolerance for the assignment of blame by those who believe they hold the key to mystical immunity from disease or who believe that those of us who are dealt a bad hand are somehow responsible for being at the short end of the odds. There is a curve for most things. I acknowledge that I'm on the left end of the bell-shaped curve in terms of those who contract PCA. But I am also pleased, and somewhat ashamed, to admit that I am on the extreme right end of the bell-shaped curve in terms of those who have done way better than their pathology reports or staging would predict.

It is not a matter of personal responsibility or lifestyle choices. If you toss enough coins all things are possible. Most of us end in the middle of the curve given a standard deviation--one side or the other. But some of us exceed the odds--either for better or worse. But it isn't a matter of belief or responsibility. It's just luck of the draw.

That's what I believe. I don't want to argue with anyone about responsibility. I don't want to hear anyone's anecdotal report of miraculous cures or of personal responsibility for failure to cure. It's a numbers game. Most of us are close the mean; some of us are above, some of us below. So it goes. It's a roll of the dice.