What scan should I get?: History... - Advanced Prostate...

Advanced Prostate Cancer

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What scan should I get?

13 Replies

History, diagnosed 4.5 years ago, 4 mets, numerous node involvement, psa in 700's. Started on Casodex, Lupron, went to 6 rounds of Doxetaxel. Psa dropped to 0.05. Fast forward, 2 years later psa started rising, went off casodex, psa went down to 0.1. Last year psa went up to 1.25, Had radiation on L5, psa went back down to 0.17. Last 8 months psa on slow rise, now at 0.85. One month ago had ct and bone scan, showed nothing. Now finishing my 3rd and final Provenge infusion. MO tells me we will meet one month after final Provenge infusion to map out a game plan. What game plan? What scan should I ask for to find out where my cancer is at? What second line treatment seems like the way to go? I'm confused regarding all these different type of pet scans, etc. Anyone else been in my shoes? come on experts, let's hear opinions please, thank you. Oh, I highly prefer a scan that doesn't require a clinical trial. I'm sure my psa will be somewhere around 1.25- 1.75. Thanks everyone.

13 Replies
Tall_Allen profile image

What treatment decision do you want a scan for?

in reply to Tall_Allen

I have no idea what to do next treatment wise, I'm looking for advice on treatment decisions as well.

Tall_Allen profile image
Tall_Allen in reply to

Discuss with your oncologist. There is no point in getting a scan until you are clear about the treatment decisions to be made.

Biteson62 profile image
Biteson62 in reply to Tall_Allen

See my reply below. Not a lot of options left your MO can offer and chemo is a double edged sword.

NPfisherman profile image

No one can tell now.....Wait and see what your PSA is post Provenge....at that time, you'll have more information....and your MO can send you to an RO... you can post then....Good luck.....

Don Pescado

tango65 profile image

I would try to get a Ga 68 PSMA PET/CT when the PSA is around 1. If there are few metastases I would discuss with the oncologist and a radiation oncologist if they could be treated with radiation (SBRT). If that is not possible, I would try to get treatment with Lu 177 PSMA abroad (Europe, Australia, South Africa), if the cost could be afforded.

The idea is to delay as much as possible the use of the new antiandrogens and chemo. The SOC of PC leads to a cancer that is impossible to stop. If one can gain a year or two using direct therapy of metastases or a systemic treatment like Lu 177 PSMA, I believe it is worthy to try it. This is the plan for my treatments and I consulted with Dr. Morris at the Sloan Kettering Cancer Center and he agreed with it.

If you follow the SOC you do not need any scan. You should start chemo or Zytiga or Xtandy along with ADT for the rest of your life.

Best of luck.

whatsinaname profile image
whatsinaname in reply to tango65

Superb advice, tango65. I hope the OP reads your post and thinks about it.

GP24 profile image
GP24 in reply to tango65

If you read the posts here, patients have followed the SOC sequence: Lupron, Provenge, Zytiga, Xgeva, Xtandi, Docetaxel, Xofigo, Cabazitaxel, Comfort Care

I ask myself, why just rely on drugs to stop the tumor from growing? You try to hit it hard but you do not touch the prostate nor the mets? I think you get a better result if you remove most of the tumor with radiation or surgery in addition to SOC. Finally, since this year, the NCCN guidelines recommend to radiate the prostate even when mets are detected with CT or bone scan after diagnosis.

whatsinaname profile image
whatsinaname in reply to GP24

Right on the ball, GP24, well said indeed !!!

Macco1 profile image
Macco1 in reply to tango65

Often wondered about that. Good to see they've considered hitting the tumor and prostate as well instead of just saying... Oh well no point it's metastasized now.

Trouble19 profile image

In my husband's case the next step was radium.

Biteson62 profile image

The best diagnostic would be a Gallium 68 PSMA-PET scan, it is done with CT. HOWEVER - why would you do this? Cancer is already metastatic within you, there is nothing the scan can do to change that and it only creates worth and reactions by medical teams that can be harmful. The problem is systemic and often undetectable. More radiation is NOT the answer as micromets are likely all over. Don't freak please, relax. Suggest you explore alternative medicine options to complement your current treatment. Your doctor might dismiss it so don't even share it with him/her as nothing i suggest below will interfere. It is the best way to extend life and it can go a long way in helping control cancer especially when the PSA is as low as yours. You have time, research and think it out. here is what I would do - knowing what i have learned over 2.5 years fighting PCa and studying the alternative side:

- 4g or more per day Vitamic C. Liposomal form easier on the stomach. Take with food.

- 1g per day Quercetin. Take with food.

- 4-8g day of quality curcumin (not turmeric). Take with food.

- Vegan diet emphasizing greens and at least some raw portions like salad. Fish 1-2 days a week is OK if you must eat some meat. No refined sugar EVER and modest sugar intake from fruits! Fermented foods are great like cultured coconut yogurt, sauerkraut, kimchi, etc.

- Juicing greens and carrot

- NEVER take fish oil for advanced PCa, it can fuel high grade PCa.

- Avoid peanuts and cashews. They can promote tumor growth in some cases.

- Minimize the use of any cooking oils. Small amounts of olive oil, avocado oil are OK but at high temps only cook with coconut oil to avoid toxicity of other oils at higher temps.

- Exercise almost daily at least 30 min. Brisk walking is fine.

If the PSA continues to rise after doing the above you need a more advanced protocol adding:

- Intravenous high dose vitamin C, 75g dose twice weekly to start dropping to once weekly. It is even more effective when coupled with blood ozone or hyperbaric oxygen immediately before of after the iv. Expensive!

- Detoxification of body using any of the following: intravenous glutathione, coffee enemas, hot epsom salt baths. The latter two approaches are dirt cheap.

If PSA continues to rise consider adding:

- Oral Anvirzel (oleandrin extract) by Nerium Biosciences for 3 months and continue if results are good. Expensive!

- Optional: Pancaur C (fenbendazole) might help. It's a dog dewormer with potent anticancer properties in humans. 1g dose/day 3 days on, 4 days off. Repeat. You might want to try this before the oleandrin as it is relatively cheap ($8/week).

Draw PSA every 30 days and assess response after 3 months. Yes this will cost but it is your life.

You can chose to pick only certain elements of the above and there should still be some benefit just not optimal benefit.

I am a clinical research scientist of 33 years with Stage 4 PCa and have yet to do androgen deprivation therapy, though I might have to do a short course soon, we shall see. I have spent an exhaustive amount of time researching this problem and all the alternative medicine options, many of which I have tried with no impact. Lots of quacks and people with half truths and misinformation - trust me if you wish - I have skin in the game. I will probably find myself repeating this post over and over here as I just joined. I have just shared a $100K worth of consulting you would spend elsewhere in your journey, as I did.

Find peace and keep your immune system top notch. Let us know how it goes please and may you be blessed with good health.

j-o-h-n profile image

Since you're lame and we don't know your name.... what's your age? location? and where are you being treated? All info is voluntary but it helps us help you and helps us too.

Thank you.... If you wish to respond, please do so in a future post and not directed to me.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/20/2019 1:07 PM DST

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