Update on the Micro Metastatic Prosta... - Advanced Prostate...

Advanced Prostate Cancer

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Update on the Micro Metastatic Prostate Cancer and doctor conversation...

Choice125 profile image
30 Replies

By the way, I have an update. We spoke to his doctor (over the phone due to Virus) and my ex would not receive any therapy at all at this time, Canada's free healthcare has it's downsides. It is highly standardized. There is such a thing called " standard of care". Everyone receives "standard of care". There are very, very few options outside the "standard of care" and you cannot even pay for it. That special early 3000 bucks scan he got was very hash hash scan that the doctor gave him referral to because we have a young child. Otherwise he would not have gotten even that. The doctor also confirmed that my ex has "Micro Metastatic Prostate Cancer". There are very few options for treating it. The whole thing is just emotionally taxing to live with.

Any Canadians here maybe? Does anyone knows if Canada does Lutetium 177 PSMA? My ex's doctor was not even talking about it...

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Choice125 profile image
Choice125
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Choice125 profile image
Choice125

That's what the doctor said, however he said at this point he would not put my ex on any drugs, at least for 3 months.

LearnAll profile image
LearnAll in reply to Choice125

WHY ? That sounds like wasting precious time...does he want his mets to grow ? I would ask the doctor to intervene and start meds now to control it while it is still early.

How high is his PSA and ALP ?

Choice125 profile image
Choice125 in reply to LearnAll

his PSA 0.8 thats all I know. My ex is not the person to even ask the doctor questions. It is hard to fight for his life, if he himself is so agreeable with the doctor's advice.

Choice125 profile image
Choice125 in reply to LearnAll

I know, I feel the same.

RyderLake2 profile image
RyderLake2

Hello,

There are Lutetium trials going on in British Columbia, Ontario, ad Quebec. Good Luck!

Choice125 profile image
Choice125 in reply to RyderLake2

thank you!!!

Tall_Allen profile image
Tall_Allen

There is a lot of controversy about the best way to treat early recurrent PC that is not yet detectably metastatic. Early analysis of the TOAD RCT suggests that intermittent hormone treatment might be beneficial. The hormone treatment might be as simple as 50 mg Casodex taken 1-7 times per week. Traveler59 is using it twice a week along with raloxifene (to prevent gynecomastia). He found that raloxifene didn't depress his testosterone levels as much as tamoxifen.

You will have a hard time getting Lu-177-PSMA anywhere before he is detectably metastatic - it may cause harm to introduce radioactive drugs into his body if they don't know if he has any PSMA-avid cancer to attract it.

DarkEnergy profile image
DarkEnergy

What a minute, are you saying that your doc can detect Circulating Tumor Cells (CTC). CTCs are cancer cells that circulate in the blood stream, they're in this micro state, until they find a soil (bone and/or visceral organs) to anchor and brew a tumor.

I really hope I'm wrong, don't think there's is an diagnostic instrument that can detect CTC burden from its primary tumor

RonnyBaby profile image
RonnyBaby in reply to DarkEnergy

You are correct in the fact that this is a 'supplementary' test that needs to be paid for out of pocket because this is not the standard of care.

I know this because I paid $4K for a test that did measure CTCs - along with a lot of other information (RGCC Group refers)

There are other third party entities that perform the same type of testing - this is becoming more common for those that are aware of the tests and the possible benefits of knowing / revealing what is temporarily hidden in SOME PCa patients.

LearnAll profile image
LearnAll

We need to get his PSA down to 0.2 and for that easiest, simplest and cheapest way is to use Bicalutamide (casodex) which is available in USA for $10 a month and in India $2 a month.

Choice125 profile image
Choice125 in reply to LearnAll

The doctor said it would be the treatment, but my guess is that he is delaying it because there is a certain period of time that it works, and then it wouldn't anymore. He would not take any non prescribed drugs. He is a law abiding pure Canadian farmerboy turned engineer with the heart of the farmer. He would not listen to me. I will get from Bicalutamide (casodex) from Russia, but I doubt he will take it. I cannot put it in his food or hide it in his drink as I assume he is (hopefully) sane and has a right to choose his own destiny.

Where do you live? My husband is under the care of an amazing team at Sunnybrook in Toronto.

LearnAll profile image
LearnAll

We are not suggesting that any medicine be given to him without his permission. It should be talked to his doctor and thats why forum members are giving suggestions..or information to discuss with his doctor. No body prescribes anything on this forum.

He is a farmer boy so I assume he loves plants and produce. There are some vegetables and roots which are anticancer and has potential to slow prostate cancer based of lots of research.

Eating one of the cruciferous vegetable( Brocolli, Cauliflower, Cabbage ,Radishes) every single day can slow the growth. They all contain an anticancer chemical called Sulforaphane which kills cancer cells.

Other important and benficial farm produce are tomatoes (cooked are better) , Guava,

pomegranade, Sweet potatoes, Soursoup, papayas, Lychi, Ginger, turmeric, Garlic ...all these are anti inflammatory and anti cancer produce which might slow progression.

These are complementary and do not substitute medical treatment ..but still can be helpful.

I wish a lot of good luck to simple-hearted, farmerboy with a heart of Gold !

novatimo profile image
novatimo

I don't wish to contradict anyone on this forum, but only to share my experience with what I use to control micro-metastasis. Based on the theory that blood thinning agents can prevent clots and therefore prevent tumor formation, I take 81mg aspirin daily. Also, Modified Citrus Pectin (brand name Pectasol-C) is a fine powder that you mix with liquid and drink. The effect (as explained to me by my naturopath in Vancouver, BC) is to make the lining of the blood vessels and organs 'slippery', thereby preventing any circulating tumor cells from finding a home where they can attach and form a tumor site.

timotur profile image
timotur in reply to novatimo

This is what my MO has recommended to minimize the chance of CTC micro-metastasis-- 81mg aspirin and MCP.

Choice125 profile image
Choice125 in reply to novatimo

Yes, it is certainly doable

Papillon2 profile image
Papillon2 in reply to novatimo

👍

MarkBC profile image
MarkBC

I am in Victoria, British Columbia and receiving excellent care at the BC Cancer Agency.

It doesn't make any sense to me that your husband is not being prescribed any ADT drugs if his PSA is 0.8 after surgical removal of the prostate. I think you need to go to another doctor.

RonnyBaby profile image
RonnyBaby

I am Canadian and based on what you reported, I suspect you need to find a urologist and/or medical oncologist (specialist) who deals with prostate cancer on a daily basis, yesterday.

You could say I have the SAME condition AND I was treated immediately upon discovery for advanced, aggressive PCa. I note that some statistics (numbers) don't appear in this post, so I assume that his PSA is/ was elevated recently OR some other markers are apparent that indicate a cancerous condition.

What you describe is NOT what I would expect to be the standard of care.

Unfortunately, sometimes we are faced with having to be more aggressive in seeking treatment for a serious medical condition.

PCa can be treated effectively (don't assume the worst) - especially with some of the newer treatment options that are in development and in clinical trials.

Be your own best advocate and get treatment started ASAP - time is a factor and undue waiting is not in your best interests.

We wish you well in your journey .....

Choice125 profile image
Choice125

His doctor is doctor Doctor Yuen, Jasper - Radiation Oncologist from Mississauga, Credit Valley Hospital.

kaptank profile image
kaptank in reply to Choice125

You definitely need a medical oncologist specializing in PCa. Radiation oncologists generally know little about our specific disease.

kaptank profile image
kaptank in reply to kaptank

I suggest ask for a referral from your regular general practitioner asap. An RO is just an adjunct to your team. This is a systemic disease and requires a systemic approach to its management. Its very important to have an oncologist who specialises in PCa. Good luck. While there's no cure, it is possible to manage it until you die of old age. Our aim is to turn a terminal disease into a chronic one and we are getting there. The earlier you suppress it (eg with bicalutamide) the better.

GP24 profile image
GP24

If he has micromets there is no cure. You have to try to live with that as long as possible and I would try to avoid side effects from treatments. At least that is my objective, to spend my remaining life without significant side effects, if possible.

I also have micromets and wait for the mets to grow to a size that they can be detected and treated. Currently I have no therapy and feel very well. American cancer statistics say I should live for at least ten years with my micromets.

Choice125 profile image
Choice125 in reply to GP24

What is your PSA? 10 years would literally save us as a family. At this stage it would get my daughter to college age and driving age, get me through 2 more college certificates and working, make it possible to have another kid and get him to the age when he can do homework by himself. ..., and I can take him after work with me. It would be a dream. 5 years would leave us broke, with 2 non driving kids and unprotected, scrambling.

GP24 profile image
GP24 in reply to Choice125

I cannot get a PSA test here because the labs are just doing Covid-19 tests. But I think the PSA value is about 1.0 ng/ml.

He will live for a long time but this time will be influenced by doctor's consultations, uncertainty, high cost of treatments and increasing side effects of the treatments. So you cannot expect him to continue to live the same way as he does now. Also, after his surgery he cannot beget a child.

cancerking profile image
cancerking

Post op my PSA was 0.1. No other evidence of mets. Lupron plus casodex for 9 months and PSA was .006. I then did radiation. it is still at .006. Be agressive, and exercise.

allmo profile image
allmo in reply to cancerking

What lab performs your psa test? I was using labcorp; but now their lowest limit of reporting is .014. Would like to find a lab that goes to 3 digits but with limits less than this.

j-o-h-n profile image
j-o-h-n

125 Choices..........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/21/2020 10:31 PM DST

Choice125 profile image
Choice125 in reply to j-o-h-n

I have the hardest time to come with humor

j-o-h-n profile image
j-o-h-n

to Choice125,

Simple.... just think of something that's funny.....

My wife gives me two choices: Take it or leave it.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/04/2020 4:31 PM DST

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