Advice : My dad is 60 and was diagnosed... - Advanced Prostate...

Advanced Prostate Cancer

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Mkdb profile image
Mkdb
33 Replies

My dad is 60 and was diagnosed with prostade cancer (4/5) Gleason 9. He hasn’t had a chance to review he results with the doctor yet — he just found out the results cause the pathologist is a family friend.

The history here is that he’s been having a hard time peeing on an off for a few months. Went in for a regular check up 2 weeks back and had pSA level of 17. He then researched and decided to do an mri last week as he was trying to figure out why his psas were elevated to 17. On the mri, there were no enlarged lymph nodes noted. He then went in for a Prostate exam and got the bad results (Gleason 9) What are the chances that it’s metastatized and how does he find out? The first time the doctor can meet him to discuss results is Wednesday. If it has metastasized, Will the recommend surgery still?

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Mkdb profile image
Mkdb
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33 Replies
gusgold profile image
gusgold

With a G9 your best bet is a RP. the pathologist can tell if there were positive margins...watch the PSA...if it starts to rise have salvage radiation before it exceeds .5

Mkdb profile image
Mkdb in reply togusgold

Thanks.. His pSA is 17 now - you’re saying if it rises above 17.5 he should have salvage radiation?

paulofaus profile image
paulofaus in reply toMkdb

I think the PSA should drop to zero post RP. Gus is suggesting salvage radiation if PSA rises from zero to 0.5.

YostConner profile image
YostConner

There is a chance it has spread. The urologist should order a full body bone scan and a full body CT or MRI. If there is evidence of spread, it’s less likely the doctor will recommend surgery. Your dad should get a second opinion, do his research and explore options. There are promising new first line treatments. Good luck to both of you.

Tall_Allen profile image
Tall_Allen

Could you tell me where your dad is located? I can possibly point him toward good local resources.

First, I know what a shock it was to hear that diagnosis, and in a "cancer panic" there is a tendency to rush to treatment, usually thinking "just cut it out!" (which is usually NOT the optimal strategy). High risk patients who waited more than 3 months to get therapy fared no worse than patients who were treated within 3 months of diagnosis. So your Dad has plenty of time to meet with several specialists and make a well-considered decision.

pcnrv.blogspot.com/2016/08/...

That's really good that the MRI found no enlarged lymph nodes. The next step is a bone scan. If you want more sensitivity than a bone scan can provide, there is a great clinical trial of a new PET detector (called DCFPyL) at NIH that is free and will take high risk patients. Here are the details:

clinicaltrials.gov/ct2/show...

(There are similar clinical trials at UCLA, Johns Hopkins, and a few other places)

If there are no distant metastases, there is every reason to believe that he can get a fully curative treatment. Here's an article with the latest findings about the relative treatment outcomes of the potentially curative treatment alternatives for men with Gleason 9:

pcnrv.blogspot.com/2018/03/...

As you can see, brachy boost therapy has much higher probability of 10-year metastasis-free survival and 10-year prostate cancer-specific survival. Depending on here your Dad is, he may not be able to find a specialist who does this therapy - it is not done everywhere. One thing to be careful of as he meets with specialists is to be aware of the fact that each specialist knows his own specialty really well, but knows little about the other specialties (which won't prevent them from telling you their opinions).

Mkdb profile image
Mkdb in reply toTall_Allen

His is really helpful.. he is located in Seattle, I’m in SF . I’m flying home in a few days to be with him. I was thinking he should have surgery ASAP and cut it out.. but it seems like there are so many other options out there and he has to do his research of course. He fact that it’s gleason 9 is really scary and the fear is every day that passes will increase chances that it will spread.. but it sounds like from what you’re saying that’s not necessarily the case.

Can you recommend any specialists in the greater Washington area?

Tall_Allen profile image
Tall_Allen in reply toMkdb

That's a very normal first reaction. PC, even high risk PC, spreads more slowly than most other cancers, so the conventional wisdom to cut it out and do it quickly does not apply. One of the mental tasks in dealing with it is to get rid of the "baggage" of what we think we know from people who have had other cancers or who had it long ago before current therapies became available.

Seattle has a couple of the best prostate cancer treatment centers in the world, notably Hutchinson/ U Washington - Seattle and Swedish Medical Center. You can call those and ask to speak to their prostate brachytherapy specialist. If he can come to SF for treatment, UCSF also ranks in the top.

But before any kind of curative treatment is attempted, it is necessary to rule out distant metastases. If he doesn't want to travel to D.C. for that PET scan (travel is reimbursed), he can get a similar one (Ga-68-PSMA-11) at UCLA for $2650 (insurance won't cover it).

Mkdb profile image
Mkdb in reply toTall_Allen

Thank you for this! We got him enrolled for the psma scan may 9th at UCLA. He’s met with 2 urologists, a radiation oncologist (Kenneth Russel) and medical oncologist but we are scheduling more appointments.. and just in mass information gathering mode at this time.. it’s been quite a whirlwind as the more we learn the more difficult any decisions seem to be. Bone scan results came back inconclusive which doesn’t help.. there were some suspicious spots on rib and in other areas but he broke his ribs and also could have osteoporosis says the doc. So at this point we cant rule out that it’s metastasized. Hoping to have more clarity after we get the results from the psma..

in reply toMkdb

You are being very proactive. That’s good...

Tall_Allen profile image
Tall_Allen in reply toMkdb

I hesitate to throw one more thing at you, but while he's at UCLA, he might want to see if he can get in to see my radiation oncologist, Chris King. Dr King has a very unique "high risk" protocol using SBRT. It's experimental but it has the advantage over brachy boost therapy that it is all done in 5 treatments, and the urinary and sexual side effects may be less. He would have to hang out in LA for 10 days (the 5 treatments are usually every other day) if he can stand the nice weather. Of course, if the PET scan is positive that would change the treatment alternatives.

Mkdb profile image
Mkdb in reply toTall_Allen

The surgeon is recommending surgery still given the bone scan results were inconclusive. He suggests radiation/chemo after in case he doesn’t get it all. He’s siting that if you do radiation first u are no longer a candidate for surgery. He thinks eliminating the bulk is the best approach. What r ur thoughts on this? Will look into SBRT with dr king. Thanks for the tip. Separately, Do you know Anything about proton therapy?

Tall_Allen profile image
Tall_Allen in reply toMkdb

Yes - surgeons ALWAYS say that, and it is misleading. There is a long list of salvage therapies if radiation fails:

pcnrv.blogspot.com/2017/09/...

You can get a PSMA PET scan at UCLA. It costs $2650.

Mkdb profile image
Mkdb in reply toTall_Allen

So the result from PSMA test at UCLA just came back and is showing 5-6 lymph nodes impacted , both in prostade and one in pelvis. This is new information since the other MRIs and bone scans showed that here was no Mets..we are all a bit disappointed we were hoping it would not show metastisis and he would do surgery and have hope for curative treatment. Part of me still thinks removing the bulk would still have benefits and we could target the lymph nodes with radiation thereafter . Or even still do brachytherapy +radiation +hormones.. with this new information, how would this impact your decision making ? We are getting close to needing to make decision on treatmentplan. Would be curious to hear your opinion. Thanks a lot

Mkdb profile image
Mkdb in reply toMkdb

Oh and the surgeons are saying surgery does not make sense because they could remove the lymph nodes in the prostade but they will not be able to reach the lymph node near the pelvis

Tall_Allen profile image
Tall_Allen in reply toMkdb

I agree that surgery would be a poor choice in his case. Even the most thorough ePLND is not likely to remove all the cancer in the prostate fossa and in the all the pelvic LNs in which the cancer is currently too small to be detected with the PSMA scan. Your best hope of a cure is with radiation. See Dr King anyway, as I suggested. He will cooperate with Dr Chang (HDR- brachytherapy) at UCLA to treat the entire pelvic area.

Tall_Allen profile image
Tall_Allen in reply toMkdb

As for protons, my opinion is it's not worth the extra cost. Many insurance companies won't cover it. Reported oncological and toxicity outcomes are no better than IMRT:

pcnrv.blogspot.com/2016/08/...

in reply toMkdb

There are alternative, possibly less invasive, treatments to conventional 'cut it out' surgery. There's external beam radiation, cryo-surgery (not recommended), and High Intensity Focused Ultrasound (HIFU). I opted for HIFU and the procedure was done at the SF surgical center on Sutter. It was out of pocket but I hear that Cigna now covers it. Here's hoping that it is contained to the prostate, which opens up all of the treatment options. Even if it isn't contained there are arguments for 'de-bulking' or treating the main tumors in the prostate. Accepted medical guidelines frown on that but people on this site have fought for and gotten this type of treatment.

mcom profile image
mcom

My dad was diagnosed with prostate cancer at age 60 as well. His Gleason was a 9 after looking at the biopsy and he recommended surgery immediately. My dad was in good health prior to this and with his age the doctor thought he would be a good candidate for a relatively easy recovery. His margins tested negative but his PSA didn't drop to 0 as we were hoping. It came in at a 0.1 (4/17) now he is at a 0.9 (4/18). The doctor ordered a bone scan which revealed that he has 3 bone mets in his pelvis and a lesion on his pancreas (not sure what this is and will have a follow up in 3-6 months). He goes back in on Wednesday to discuss options - hormone therapy, radiation, or chemo. From what I have read it really depends on the doctor as to whether or not they will do surgery on the higher gleason numbers.

Schwah profile image
Schwah in reply tomcom

I had treatment and was fine for 6 years. Recently diagnosed with 3 mets. One on rin cage and two on pelvis. My doctor in southern cal is amazing. Prostate oncologist who does nothing but prostate cancer. His advise was to hit it hard now before it got out of control. I did chemo and lupron and zytega all at once. Also had radiation on the three mets. My PSA is down to .05. Recent Studies have shown that lupron and zytega together with better than either alone. Also studies show lupron and chemo work Better together than alone. So the theory is all three will work better than any two. If A plus B is better than A or B and B plus C is better than B or C than A plus B plus C should be the best. Anyway that's the theory. So far so good. Key with lupron is to lift weights hard three days a week to offset side affects. I do that and I feel great. Good luck.

windsorje profile image
windsorje in reply toSchwah

Sounds like you may reside in California. If so, have you used or considered medical marijuana? Earlier this year I can across information that medical marijuana has positive affects cancer cells. If you have the time google cannabis for cancer. You might be surprised.

in reply towindsorje

I got my medical marijuana card. I live in AZ. Not sold on the cancer benefit but it provides relaxation, pain relief, and a very nice buzz. Go to Leafly.com for info on the various strains and dispensary offerings.

in reply to

People that are afraid of the buzz just don’t understand.. The buzz lifts spirits and makes my life more enjoyable.

in reply toSchwah

Keep lifting! A B C d e f , I’ll throw the kitchen sink at APC if that helps..

in reply tomcom

To mcom , Damed if do, damed if you don’t. Sorry for pops.. it’s a tragedy.. a twisted path of APC .

jimhagood profile image
jimhagood

Generally speaking, an otherwise healthy 60 yr old man with dual lobe Gleason 9 PC, will benefit from RP whether or not the cancer has metastasized. This is true whether or not the metastasis is regional or distant. Without surgery, a condition known as acute and chronic prostatitis will likely ensue. The condition alone can compromise one’s health, and, can be particularly miserable for one in late stage illness. Much more optimistically speaking, and to the point, surgical removal of the gland could in fact be curative, if PSA drops to 0 and stays there following surgery.

whatsinaname profile image
whatsinaname in reply tojimhagood

IF, what you say is indeed the case, THEN why do a number of uro-oncologists not advice surgery for metastatic prostate cancer patients ?? I myself was advised no surgery but instead hormone therapy + radiation therapy + brachytherapy. Besides, IF, the cancer has already spread to other parts of the body, how will RP alone solve the problem ??

in reply towhatsinaname

If it has spread RP won't solve the problem, but debulking or getting rid of the main tumors would eliminate the 'metastasis factory' which is shedding cancers cells. At least that is my common sense conclusion. I'm not a doctor.

whatsinaname profile image
whatsinaname in reply to

Wouldn't radiation therapy + brachytherapy + hormone therapy do the job far more effectively than robotic radical surgery ? Also, with far less side effects. And, at lower cost as well ?

leo2634 profile image
leo2634

Hello its not easy to hear but it has all the signs of advanced prostate cancer. I have been diognosed with all of the results your dad has and my PSA was 13. My doctor sent me for all the tests including a bone scan which revealed the Mets. The best advice I can give him is to stay positive and seek treatment if you read my profile you can see what is working for me. Tell him to join our support group and we will share our battle together remember strength in numbers. Best if luck Leo.

Hairlessness profile image
Hairlessness

Your father might want to consult with Dr Ben Chue, of Life Spring in Seattle lifespringcancer.com He is very advanced in his treatments, is associated with the Swedish Medical System, and has a naturopath doctor on staff to consult on diet and supplements. He practiced inmmuotheropy at UCSF and oncology at Hutchinson Cancer Center before starting Life Spring Cancer. If he goes in tell him not to be alarmed at all the younger people with laptops, they are intern oncologist not nurses.

As a patient with an advanced aggressive cancer, I know that he has brought me great hope. If you want more info please contact me.

Dave

Mkdb profile image
Mkdb in reply toHairlessness

Thank you for this recommendation, he met with him yesterday and got a lot of great information, really nice go.

You are now completely in the dark . A frightening experience. We’ve all been there. Come wendsday , you’ ll know much more. Please get back to us. Then the wise will answer any questions that you will have. Has he had a biopsy? Whatever it turns out to be , there is much that can be done to survive and live with APC . It doesn’t sound like its an immediate death sentence.. he will do what’s needed t9 be with you for some time. Of coarse there are no guarantees for any of us in life. Distract him with support and love.. He will suffer as we all do from treatments and side effects but he will most likely live for awhile.. This is a wake up for all of us not to waste our days here with negativity. Getting diagnosed with a terminal cancer strikes fear in u all . After treatments you should get the intended results. If so lucky then you can regroup and assess “where do we go from here” Just having you, one person on his side will get him thru.. lots of love and prayers... find ways to distract him, make him laugh...

We hope that he s a candidate for surgery. I was not a candidate. That meant at the time my PC was throughout my pelvis blocking urethra and inducing kidney failure. If your father has mets, they can be dealt with. I suggest a total healthy diet and exercise routine and someone to nudge him into good things. He can do this with your love behind him.. IN THIS STRESSFUL FAMILY TIME BE GOOD TO YOURSELF, good daughter... 60 is not old in the scope of APC. Best wishes.

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