Early stage pc?

[Elizabeth185]

My boyfriend was recently diagnosed with prostate cancer. His Gleason scores were mostly 3+3, but there were two 4+3. There is a treatment advertised in this area called CyberKnife. Has anyone used this treatment? We are not sure where to go for treatment. We are in Pennsylvania, near West Chester. Thank you all!

[Hidden]

Being in West Chester you have excellent choices for your care. Fox Chase Cancer Center. Jefferson. U Penn.

[Elizabeth185 in reply to Hidden]

Are you familiar with a treatment called CyberKnife? How is it different from other radiation treatments? They advertise five treatments and you're done. Also want to find a really good radiation oncologist. Thank you

[Hidden in reply to Elizabeth185]

I have heard of it, but I had surgery so I am not the guy to talk to. There is another group here where you will find more people at this early stage. healthunlocked.com/prostate... There is also another community I found that has alot of guys that had radiation healingwell.com/community/d... Dr Horwitz at Fox Chase is very good. foxchase.org/eric-horwitz.

[Steve507 in reply to Elizabeth185]

Cyberknife is marketing gimmick, Shamelessly so. But that's the American way. A good urologist will steer you the right way.

[climb4blue in reply to Steve507]

Cyberknife is a robotic arm technology. It is quite sophisticated. I believe Elizabeth 185 is on the right path. I commend her for helping her boyfriend and seeking a radiation oncologist rather than a urologist.

What I mean Steve507, I respectfully disagree with everything you wrote.

[Hidden]

The most important thing you can try and determine is if the cancer is confined to the prostate. There are new scans available, "PSMA Pet"to see if any of the cells jumped the shark and landed in a nearby lymph node. So when you do talk to your treating dr, ask about it.

[Elizabeth185]

Thank you very much for this information. One of the big obstacles is cost: my boyfriend has Medicare Advantage? and he said he has to pay the first $7000 for treatment cost. So he doesn't want to treat his PC at all.....just wants to ignore it and let nature take its course.

[Justcallmeamy in reply to Elizabeth185]

Hi. I am wondering what is his age?

[maley2711 in reply to Elizabeth185]

First, please Google the MSK prostate cancer nomograms, and there are 2 that would be appropriate to check at this stage of information. The 1st is the life expectancy nomogram for men who have been diagnosed but who have refused initial treatment. The 2nd is the nomogram that shows cure rates and 10-15 yr PCa survival rates for men who plan on treatment...compare the results of the 2 nomograms and thenhe can decide if the $7000 is too much to spend to greatly enhance his odds of living a longer life.....of course, if he is 90, doing nothing might be a very reasonable decision. Are you sure that he has zero coverage for te 1st $7000 of treatment? That must be a very low premium Advantage plan?

Cyberknife is just a clever name for an intense 5 day radiation treatment...and results have been generally very good as far as cure...the possibility of certain side effects, ie the SEs, are probably the major reason that men choose one of the treatments and not the other.

A great place to get a good idea of the flow of the care for PCa is the NCCN prostate cancer guidelines...for many Docs, that publication is their Bible!

Finally, his risk status is based on his Gleason 4+3 samples, not the 3+3 ! Gleason 4+3 is UNFAVORABLE intermediate risk.....Gleason 4+4 is high risk. Risk as to metastasis(no cure) and death.

[Elizabeth185 in reply to maley2711]

Dear Maley, I am not sure if his Gleason scores were 3+4 or 4+3 on two of the samples. The remained were 3+3. He just turned 70. Yes, he has the lowest premium Advantage plan because that is all he can afford. He goes through the VA, but even through them, the urologist says it will be $7000. I really think the obstacle is mostly mental; just doesn't want to do the treatment; thinks life is "overrated" - I have to look again at his biopsy. Does it make a difference if it is 3+4 rather than 4+3? I definitely hoped to find a clinical study so the treatment would be paid for. I am happy to drive him to all appointments and help out financially, but he has always been a stubborn, independent sort of person. It's part of why I love him. I will google the MSK prostate cancer nomograms. Thank you for your suggestions!

[maley2711 in reply to Elizabeth185]

Yes, it does matter to some degree.....treatment could be different for 3+4 vs 4+3.

Hmmmm.....I thought that those eligible for VA were well covered...no $7000 deductible....guess I was wrong. I Know a vet goes to our VA lcated adjacent to our med school...I'll ask him. He doesn't have the $7000 I know. Also, Oregon has a program for low/no cost coverage for very poor folks.

What state? Maybe check NIH prostate cancer clinical trials...though doubt you'll find anything for initial treatments....Google isn't perfect, but amazingly helpful I've found.

Some folks also use the search feature at pubmed.com....where thousands of studies are available .

Does he have good health otherwise? at 70, with treatment, he would most likely not die from PCa . without treatment, of course the odds worsen.....but definitely could be "lucky" and dies from other cause. Life expectancy at 70 is 83-85 I believe.

Does he have any family who cares about him?

[FRTHBST in reply to Elizabeth185]

Another suggestion for one who is newly diagnosed, take a look at Dr. Walsh's book, "Guide to Surviving Prostate Cancer. Gather as much information about treatment possibilities as you can. Ask his doctors about the PSMA PET and/or Multi Parametric MRI scans others have mentioned that might offer some idea of how localized the cancer is. The MSK Nomograms are definitely worth consulting, also the Johns Hopkins Partin Tables. Pca is most often a relatively slow growing cancer, his doctors can give you some idea of how much time to take in learning and seeking out the best treatments-in my case with a 4+3(later upgraded to a 9) the Medical Oncologist at Sloan Kettering told me that 6 months likely wouldn't make a difference in eventual outcome for me.

Medicare is an absurdly complex system and Advantage plans are targeted to those with the least resources, often having huge financial drawbacks if one actually does need serious medical care. The fact that your boyfriend is sick with a life threatening illness and is considering foregoing standard of care treatment because of cost is certainly a win for the insurance industry. Find an independent medicare specialist, they can advise about what other options may be available.

When I was first diagnosed, friends set up a Go Fund Me page and many people donated. Don't be afraid to ask for help.

[Elizabeth185 in reply to FRTHBST]

Thank you for this information!

[Hidden in reply to Elizabeth185]

I’m sorry to hear that. It’s a crying shame to have to weight cost$= to life. The main flaw in our system. C treatments should all be free to us. Mod med has capitalized cancer . 😩

[Tall_Allen]

I had SBRT. (CyberKnife is one of several ways of delivering SBRT).

Philadelphia CyberKnife center has published some excellent results:

frontiersin.org/articles/10...

This is a site for men with advanced prostate cancer. Your bf doesn't have advanced prostate cancer, so you may get more appropriate responses if you post on the following site:

healthunlocked.com/prostate...

[babychi]

Hi Elizabeth. If your friend had a 3TMRI guided biopsy and is certain of the diagnosis of G6 with some G7, he needs not to panic. G6 is believed to be indolent. Maybe research as much as you can, get second opinion and PSMA PET scan to check for any metastisis. Perhaps research dietary changes if he eats western diet of meat etc. Research whole food plant based diet. Good outcomes to you and your man.🌺

[Steve507]

Go to a urologist! 2nd opinion? Take it easy and go step by step. I had PCA 3+4. Take a deep breath and know his odds are on your side.

I had curative treatment 3 years ago.

Every man is different. Find your own way but you have every reason to be optimistic

[dhccpa in reply to Steve507]

What type of treatment did you have? Thanks

[Spyder54]

Talk w Dr Jonathon Coleman at Memorial Slian Kettering in NYC. HE IS RUNNING the first Human Trial -Phase 1 on Nano Knife for Intermediate Prostate Cancer. You may qualify. I called the company Angio Bionics in California. They referred me to him. I met with him, nice guy, but was told I was too far advanced and would not qualify. Good Luck, this may become the 5th mode for Prostetechtomy: . Surgery, Radiation, Hifu, Cryoablation,…..Nano Knife.

Mike

[Spyder54 in reply to Spyder54]

Im half asleep. Cyberknife is a marketing name for Stereotactic Ablative Radiation. SBRT/SABR. Dr. Sean McBride at MSKCC did mine. As many have said before me, he is on top of his game. Mike

[Tony666 in reply to Spyder54]

Yes. This is a good option since if you join a trial the costs are minimal.

[j-o-h-n]

To Betty if you're ready,

He and you are getting ahead of yourselves...... Stop - Drop - and Roll..... See a Good Urologist there in PA or get one in NYC (Memorial Sloan Kettering c.c.) and use him or her. Prostate ca is a slow growing ca so you have plenty of time to do your research. Take time out to breathe.I think you're too early for any Knives....... But I must warn you, I am not a doctor but I do look handsome in a white coat.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/06/2022 9:29 PM EST