New to the forum: Hi, I'm new to the... - Advanced Prostate...

Advanced Prostate Cancer

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Hi, I'm new to the forum and looking for suggestions. I've been reading the forum ever since I got my RP back in October. I was really hoping to be done with this, but unfortunately it looks like my PSA is starting to rise again. (.11 last check) Looks like I'm reaching a decision point, or at least according to my Urologist. He thinks I should consider radiation, but I'm not sure I want to go that direction. It seems like the conventional medical establishment all have this approach of cut, burn and poison as a solution for everything. If that's my only option, I guess I'll have to go that way.

I've seen quite a few posts here where people have used other natural methods with diet, supplements and exercise to control their PSAs that work more with the body vs. against it. Maybe I'm just a dreamer that this kind of thing can work. Can anyone share their experiences with various approaches? Probably have to do something if my PSA keeps going up.

Dan

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19 Replies
Tall_Allen profile image
Tall_Allen

Salvage radiation may be curative. If you do it soon after confirmation you may be able to avoid long-term ADT and whole pelvic radiation. Wishful thinking and wacky remedies will assure that you will be dealing with this for as long as you live.

chickgreen profile image
chickgreen

I can't talk to the natural remedies, those I know who've tried them for other cancers, have moved on.

I had RARP, and IMRT as a salvage radiation - it was not terribly bad, and recovery from the radiation has been pretty quick. For me, the QOL issues are arising from ADT, and it sounds like your urologist is trying to avoid that.

I would encourage you to talk with radiation oncologists, and with medical oncologists as well. I'm one of those who feel that you can't have to much information. To that end, there are some good videos on YouTube - just ensure that you are looking at videos made within the last couple of years. PCRI and anything with Dr. Kwon are good.

tango65 profile image
tango65

If your PSA is 0.1 after RP the cancer is progressing somewhere.

If I were in your situation I would request a PSMA PET/CT and a 3T MRI of the pelvis which could help to determine were the cancer is located and also help with the planning of the treatment.

If there are not distant mets , an adequate treatment of the cancer at this time with radiation and perhaps hormone therapy could cure the cancer or provide a long time to progression.

GP24 profile image
GP24

"If that's my only option, I guess I'll have to go that way. " Go that way. Natural methods are not that effective that they can save you from radiation.

KocoPr profile image
KocoPr

hi Dan.

Welcome to the group no one wants to be a member of.

I was in a similar position after RP with bio recurrence within a few months. In other words my cancer had escaped after being on the standard “Watchful waiting” then “Active Surveillance “ for two years before RP. A ridiculous protocol. I went through the radiation EBRT 37 treatments after healing from RP, while doing a regimen of kelgel exercises. It is advised to get your nerves working as best you can before undergoing radiation. The RO advised me to go on a short term ADT with radiation. I declined the ADT (shouldn’t have). The radiation caused no side effects. If you do suffer from radiation damage I highly recommend HBOT Hyperbaric Oxygen Therapy which insurance covers for radiation damage. I bought my own chamber and used that to get ahead of any future problems. I believe the SOC now is triplet therapy (Radiation, ADT, and chemo)

I am also an herbalist and believe in natural healing but the problem is that once your cancer has escaped it is circulating everywhere/anywhere. I have done keto with HBOT (Thomas Sefreid - Boston College). I have also done the COC Care Oncology Center protocol but wasn’t impressed with pumping more drugs (membendazole, doxycycline, atorvastatin) in my body. I also did Fenbendazole for about 7 months but the COC, and fenbendazole wasn’t working for me.

I would absolutely request a genetic test done on your prostate tumor and germline.I had the “Snapshot-NGS-V2 assay, also IHC on tumor .

you can look at my bio for more info on my PCa history

KocoPr profile image
KocoPr

i would also lean heavily on what TA has to say. Follow his advice and if you want you can certainly do complimentary medicine but your best chance for a longer survival is finding a very good OC and institution and listen to the OC.

larry_dammit profile image
larry_dammit

well the question is Do you want to experiment with your body or do you want to live as long as you can ? Stage 4 here August of 16 at 66 years old. Mets all over so can’t remove the prostate. I think if I were in your position, I would find a good oncologist and get a second opinion. Just saying

Mjk681 profile image
Mjk681

Look into FenbendazoleIvermectin

Apricot seeds

I have stage 4

Possible metastasis in lung and bone after 3 yrs

Did the prostatectomy with 35 lymph nodes removed

Psa up 3 mons after prostatectomy

39 rounds of radiation

Did nothing but weaken my blood count

Probably destroyed my bone marrow, bladder, leak like a siv from radiation 2 1/2 yrs now

Seek holistic.

3 oncos want me on hormone therapy

No way

Doctors suck

pakb profile image
pakb

I'd suggest getting 2nd and 3rd opinions from oncologists- not urologists at this point. Your urologist should be referring you to an oncologist. See a radiation oncologist (RO), surgical oncologist and medical oncologist (MO). Try to find one's who specialize in prostate cancer. In my opinion, and from what I've seen on these forums, nutrition can help you feel stronger to fight- as well as help you feel control- but not cure the disease.

London441 profile image
London441

Nutrition and exercise can augment treatment and are indispensable regardless of the presence or absence of disease. Employing them in place of modern medicine is more popular than it should be, and robs you of the chance to take advantage of the incredible gifts of that medicine.

Many bitter patients who have done poorly and condemn medicine were either unhealthy to start with or had inferior care. Or they cut short or refused that care. It’s a complex disease and a challenging field. Get the best medical oncologist who specializes in Pca that you can find.

NecessarilySo profile image
NecessarilySo

Here's the thing: if there are metastases in your body that escaped the prostate before removal, or if the surgery caused them to escape, or even if they escaped due to the biopsy, then you have prostate cancer cells growing in your body. They grow by dividing on a regular basis unless you do things to slow them down. In my case hormone therapy has kept mine under pretty good control for a long time. But again, here's the thing: I get a Lupron shot every three months and in the meantime, that cancer, in lymph nodes, bones, wherever, does not just sit still doing nothing...it multiplies. That's about all it does. Fortunately for me I can tell what it's doing by pain. I have had spots come and go here and there, and I have self-treated them with a few things: lycopenes, heat, and magnets have helped me rid those pain spots at least temporarily. I don't know if it is possible to rid them entirely but it seems a possibliity.

Thank you all for help you've given me.

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

Greetings cancerfighter55,

Had my bed fried with top of the line equipment in 2005 at MSKcc. 39 sessions 8 straight weeks, 5 days a week, (Monday through Friday). It was as if I was taking an Xray at my dentist (No pain or discomfort, during or after).

NOTE: A couple of years later they discovered that my left urinary tract was crimped and I had to have a stent inserted up and removed from my WillyDilly every three months. The experts weren't sure that this was due to the frying or to a few kidney stone incidents I've had in the past. So based on a toss of a coin the experts decided it was the frying (as well as taken the option to receive the kick off). The in and out of the stent was not (I repeat NOT) and issue during the three to four years of the stent procedure. No pain No nuttin.....

So the ball is in your court and I hope you ace it.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/30/2023 10:44 PM EST

JWPMP profile image
JWPMP in reply toj-o-h-n

YOU'RE BACK !!! So glad to see you !

j-o-h-n profile image
j-o-h-n in reply toJWPMP

Thank you..... nice to see you "two"... My writer's are sending me more material, this time written with crayons on toilet tissue. That's all they're allowed to use in the joint.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/31/2023 6:38 PM EST

Nusch profile image
Nusch in reply toj-o-h-n

Welcome back John, how do you feel?

j-o-h-n profile image
j-o-h-n in reply toNusch

Thank you....Feeling ok for an 86 year old stud who still dates women, except my Urologist feels I'm pissing away money.

Heed the doc?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/31/2023 7:00 PM EST

Nusch profile image
Nusch in reply toj-o-h-n

Love your humor - let’s rock’n’roll.

jacro profile image
jacro

Hi Dan. I was in a similar position to yours just a couple of months ago when I joined this forum looking for some sage advice. And the advice that was shared here did help in making my decision. In my case when PSA got to 0.12 I had a PSMA/PET and a CT bone scan done to ensure there was nothing visibly spread. The RO recommended salvage radiation to the prostate bed and lymph nodes and a six month ADT (Lupron shot). After contemplating my options and the advice here, I decided to move on with the RO’s recommendation. I got my Lupron shot 5 weeks ago and I am currently at day 20 of 38 radiation program. Side effects so far are manageable and not bad. Hope this helps in choosing your therapy.

John

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