Prostate Cancer Support Group

Hi everyone, I am still waking in the mornings just to realize that actually it is not a bad dream, it is the sad reality, but keeping positive up to now with a few lows along the road. I was wondering if there is anyone in this group around my age, 52, with an aggressive advanced PC? My urologists and convinced it is already metastatic even if the bone and MRI scan were negative. They base there statement only on my high PSA (111) and Gleason (9). I heard the only way to be sure is with a PET scan but here in Spain in my case it is not their protocol. They do the PET scan only for those who have had their prostrate removed but that their PSA is still rising. I DON'T BELIEVE I HAVE METASTASIS!!!!!!!! I was sure in my gut before both MRI and bone scan that they would be negative and was right but I also must accept that the docs have much experience. Everyone tells me to be positive and that is half the battle but I find their attitude that there is no cure very negative. Nobody can give me a prognosis. They must have stats but I guess if it is not so good they don't really like to tell. They say I have to be on HDT for at least 3 years, but after that they say nothing. I know the HDT will not cure it, but what comes after? I am determined to reverse this thing somehow and will continue to search for alternative possibilities. One interesting report I have read coming from Mexico is that there is a clinic there which heats your body up to fever temp and claim to have amazing results melting away tumors and even metastasis. If anyone is interested to read about it let me know and I will forward you the report.

Anyway, thank you everyone in here for just being there with your understanding.

I have advanced PCa and have been on hormone therapy.

They cannot diagnose Prostate Cancer with a PSA reading. There must be a biopsy to do that.

A Gleason score is also dependent upon a biopsy. Therefore, you might have had one and didn't realise it.

If a MRI and Bone Scan were negative, your doctor is only guessing.

There is no need to hurry into treatment - time is on your side

Your doctor does not own your problem - you do.

Go get a second opinion - at least change doctors.

In the meantime, visit mt prostate cancer website "Greg's Legacy"

Hi Greg, thanks for your reply. I had a biopsy and the gleason was 9 in 10 of the samples. I agree about the metastasis that it is a guess without the PET scan to prove it, but I suppose it is an experienced guess. I have had 4 opinions from urologists in both Spain and UK. I have already started HDT and am on the 6th day since the implant injection. I was scared that if it was NOT already microscopic metastasis (as they call it) that it might become so quickly with my high gleason so I started the HDT. Just this morning I got a reply to my mail to the mexican clinic. Dr.Donato Perez Garcia, MD, the head of it says that he can treat me with low dose chemo or IPTLD (Insulin Potentiation Targeted Low Dose). I will check further into it but I would appreciate your opinion on it if you have heard of it. Google it if you have not heard. So Greg what are our options? Thanks again for being there. Kevin

I have not heard of the IPTLD treatment. My first google came back with this

When a doctor administers IPTLD, the first thing he or she does is to gently lower the patient’s blood sugar level with insulin, the same natural hormone diabetics use. The cancer cells, because they must have sugar to live, become ravenous and open those insulin receptors wide to get at whatever they can find in the blood stream’s diminishing supply. When the blood sugar level has dropped enough, the doctor will administer a low dose of chemotherapy. The cancer cells take it in. The doctor then administers glucose which brings the patient’s blood sugar level back up to normal.

Because insulin assists in the delivery of the drugs, IPTLD uses about 90% less chemotherapy compared to conventional oncology. This means that patients continue to thrive, maintain their lifestyle, and be vital while the cancer is eradicated.

When you have done your research, please get back to us as we all want to know more.

ADT is a mongrel treatment. The side effects usually kick in in week 3 and it takes just as long for them to start going away when you stop the injections.

Good luck and keep on asking questions. It is your life at stake.

Hi Greg, yes the logic behind the IPTLD is very interesting and I am always in favour for less side effects due to the low doses of chemo. I have had a reply from the Doctor himself and he is confident to be able to treat me successfully. This option as well as going to Peru to an Ayahuasca/plant healing center and the option of 'proton radiation' I am keeping in my pocket as possible back up plans if the treatment I am on now (HDT plus a full on nature cure with diet), doesn't have the required results, but I want to 'believe' that what I am doing right now is the right thing for me. I am, however, always interested in new/old treatments that really work. It is quite well known now that the main reason we don't hear about these other alternative treatments is because the 'powers to be', drug manufacturers, loose the possible profits from their own meds if the alternatives are cheap and effective. Saying all this, I find it difficult to choose or decide who is correct or not. So my main strategy so far is to sieve out all the info I find common on all kind of websites.

Wouldn't it be great if Doctors got paid only when they achieve positive results from their prescribed treatments?

It would clean out all the charlatans of which there are many.

LETS NOT GIVE UP AND KEEP ON SEARCHING FOR OUR CURE!!!

There is no such thing as a "full on nature cure with diet". Alternatives do not work. Complementary treatments alongside medicines best practice are usually helpful but still fall short of a cure.

Don't get distracted by charlatan doctors. We need a good doctor to guide us through the maze of prostate cancer. Without having PCa themselves, doctors can easily form unsound opinions that need to be tested - by you.

And, just to make your day ... recent readings indicate that proton radiation is no better than the normal external beam radiation but it costs a hell of a lot more.

Post edited by: GregNaylor, at: 07/20/2012 06:30 PM

Hi Greg, what reading do you refer to about proton radiation? I would be very interested to read about it. As for alternative 'cures', I have friends (not hear say), who have cured them selves through non orthodox methods with a combination of homeopathic, herbal and strict dieting for different kinds of cancer. I also know people who tried alternative cures and who are no longer with us. I cannot accept that there is no cure. Everyone with any kind of cancer have been telling me to stay positive and that doing so is already half the battle. So to say there is 'no cure' I find a negative attitude and if I believe them then how is it possible to stay positive. No cure perhaps with their orthodox meds but that does not mean through other means it is not possible. I don't want to give up just because they say no cure. So if it is really true what is our prognosis? How long before we become resistant to the hormones and then what happens? How long do we have after that?

If I can find the proton article I read, I will refer it to you. "homeopathic, herbal and strict dieting" are complementary rather than alternative. My attitude is not negative - rather it is realistic.

I have a stage D or IV tumor with a Gleason of 9. They predicted my death some three years ago but I am still around. I all but died in April when I contracted double pneumonia with pleuresy followed by a blocked bowel. They had me in the palliative room (dying room) at the hospital telling me I would be dead in a couple of days. Somehow, I pulled through.

I can tell you it won't be for long as I am now on life support oxygen and slowly fading away.

I keep looking for a cure but am continually thwarted. I now accept my lot and concentrate on finding the most comfortable way out.

I wish you well and hope you find your cure before it gets to the stage mine is at.

Post edited by: GregNaylor, at: 07/21/2012 04:09 AM