mcp1941

[mcp1941]

I was diagnosed 11/1996 PSA 95, Gleason 4+3 No detectable mets. Started Lupron and Casodex 1/1997 - 5 weeks EBRT 4&5/97 Seed Implant 9/1997 and stopped all ADT. Went about 13 years with PSA at times undetectable or bouncing at a very low number. Then came recurrence. Started seeing Dr. Snuffy Myers in Virginia. He sent me to Orlando for imaging with Feraheme which showed 4 lymph node clusters positive, Went to Datolli Cancer Center in Sarasota, FL for 8 weeks ERBT plus Lupron and Casodex. PSA started going up again after a few months. Stopped Casodex and started Zytiga on 9/2013. PSA was undetectable for 5 months then stopped all ADT. PSA remained undetectable for an additional 6 months the started to rise again. I changed oncologists and he put me on Lupron on 5/2017. PSA steady at 0.9. I don't think my doctor is aggresive enough in treatment. I now have lower back pain. He doesn't want to do a bone scan because the results will not change his treatment plan. Is having a PSA of 0.9 OK? I had a 2 and a half year holiday but at the rate the PSA is going I will never have another holiday and probably become hormone refractory pretty quick. Should I get a second opinion?

[Hidden]

Yes, I think so.

So what would change his treatment plan?

Is he saying that if you had a large met in your lower back, he would press on with Lupron only? The PSA can be useful at the start, is useful at the start, but becomes less reliable as treatment progresses. PSA itself is not harmful, and is a product of "gene expression". The central problem with cancer is not gene expression, but cell division, a different biological process. Yes it is true that lowering testosterone, which is what activates the Androgen Receptor, is effective against prostate cancer in the beginning, but why that works at that time is less than clear, even after 60 years.

And congratulations on your 20 year run and successful treatment so far.

[mcp1941 in reply to Hidden]

Dr. would change treatment plan if PSA goes up to 2.0. Testosterone is undetectable.

Thanks

[AlanMeyer]

I agree with Martin, a second opinion is a good idea.

When you were on Lupron, the PSA eventually started to rise. When you were on Zytiga it went down and stayed down. I don't understand why the doctor would switch you from a drug that you knew was working to a drug that you knew was becoming less effective. There might be a good reason for that but, if it were me, I'd want to know what that reason was. Perhaps he thinks that it's better to stay on Lupron until it really fails in order to have a longer run on Zytiga, but I'm not sure that is scientifically sound.

I always suggest finding a medical oncologist who specializes in prostate cancer and keeps up with the latest research. For example, perhaps someone at one of the NCI Designated Cancer Centers:

cancer.gov/research/nci-rol...

Best of luck.

Alan

[mcp1941 in reply to AlanMeyer]

I have my next appointment with Dr. in Jan. If things stay the same I will get a second opinion.

Thanks

[Lombardi24 in reply to mcp1941]

If your oncologist has confirmed metastases especially lymph nodes...and he is unwilling to scan (full body bone scan and possibly a CT scan for soft tissue mets)...GET ANOTHER OPINION. Met prostate cancer...can move like fire through dry grass. Ii am not sure what his reasoning is...but it's worrisome. My doc at Sloan Kettering in NYC would recommendc a scan prior to an during any treatment to see where and what cancer is doing. Don't wait. It's thed differencee between keeping the lesions to a localized area or finding them elsewhere as well.

[Hidden in reply to Lombardi24]

Totally agree with Lombardi24, I was initially diagnosed 5 years ago, GS 6, PSA 6, no mets, went on 'active" surveillance, but after 3 years of no progression. I lapsed in surveillance and then, "Met prostate cancer...can move like fire through dry grass.", it happened for me!

About 5 years later after initial diagnosis, PSA 1000+, extensive metastasis pelvic area and LN's, the pelvic MRI looked like scrambled eggs! Large tumors extending my prostate to 4 times the size.

The cancer was local area wildfire, but not spread beyond distant areas, my spine lit up like a christmas lights, but biopsy confirmed no cancer cells. Have some kind of secondary bone degenerative disease.

Anyway, once prostate cancer is noticed, you need to respond like a hungry hawk...

[rococo]

If you have a bone met thats giving you pain, I think your alkline phos. would be on the rise, a good blood marker. Thats alkaline phosphatase .Remember you still have prostate gland may still make psa and there is always inflamation. I use zyflamand for that from swanson health products. Your history is interesting to me since I had r.t + H. T with psa rec. Med. Treated 13 yrs. Congrats. For 20 yr. Rocco

[DenDoc]

My story and my actual time of treatment is very parallel to yours even to the years. My PSA started lower and my Gleason is a 3+3(who says they do not metastasize) My data is on my profile.

I am currently hormone refractive and have lung mets(none in bones). Next week I start on Provenge. We are reserving the Androgen Receptor blockers for the next step.

I am 76 and after 20 years, I hope to beat this back and die of some other cause. Get a second opinion as suggested above. This is not a time for less aggressive treatment unless you have other conditions which limit your life.

[mcp1941 in reply to DenDoc]

I am also 76 with several other medical problems. As I told Allen I will get a second opinion in Jan. if nothing changes.

Thanks

[j-o-h-n]

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j-o-h-n Wednesday 11/08/2017 7:00 PM EST