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rising psa gleason was 9

sfcspre
Posts: 14
Joined: Dec 2011

hello. had robotic surgery in 2010 . for one year psa undetectable. had my first positive psa in march 2011 and then it doubled in 3 months. then doubled again. had radiation and doubled again. right now psa is at .3 When fisrt had cancer psa was only at 1.9 the gleason scores were 9 . anybody have any suggestions. now age 53 in a month .hope to make 63 . not looking good. thanks

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hi, sfcspre, and welcome to the forum. Sorry to read of your diagnosis. As you know, a Gleason 9 has an almost certain chance of metastasis regardless of the initial treatment choice and that seems to be borne out in your history. The low PSA score you recorded before surgery is indicative of the poorly differentiated cancer cells characteristic of advanced prostate cancer. I'm wondering if you have been on any sort of hormone therapy yet? If not, I would think that this is the next step your medical team will want to take and it will undoubtedly slow the progress of your cancer.

Best to you as you prepare for the next steps in fighting this battle.

K

sfcspre
Posts: 14
Joined: Dec 2011

thank you for your concern. they want to see my test. levels before harmone. just found out it was 307. to me it tells me something else is feeding the cells. hanging in there.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I suspect that some form of hormone therapy is in your future. I am surprised that it was not started at the time of your initial diagnosis. It might be a good idea to start researching the various drugs and their potential side effects so that you are prepared to ask a lot of questions when your doctor lays out the options. I would also urge you to seek some second opinions.

K

sfcspre
Posts: 14
Joined: Dec 2011

yes that was discussed . said cemo would not help. at the time of surgery tumor was already on the outside. new it was just a matter of time. but did not think with in a year it would come back. said harmone would take about 7 months and does not know how long if any it would help. sound correct.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Sfcspre
Your post doesn’t make sense to me. Why have you been recommended hormonal treatment in 7 months? And Why shouldn’t HT help you ?
If recurrence is established you should start a salvage treatment the soonest. That should be decided in view of your present status. NCCN recommendations for young patients are to get treatments that can provide cure not just control. Depending in your present status you may benefit from salvage radiotherapy in combination with hormonal treatment.

Discuss with your doctor about the matter and get second opinions from other specialists.

Hope for the best and do not give up.

VG

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Vasco is right, sfcspre. Hormone therapy seems like the best step for you now and I suspect it should have been started earlier. Please seek some second opinions on your situation.

K

sfcspre
Posts: 14
Joined: Dec 2011

sorry to everyone trying to help. mind is not in right place. 2010 had psa reading of 1.9 .found tumor by digital exam. biopsies were 20 out of 20 positive. gleason score were mostly 9s. had robotic in march 2010. 2011 had my first positive psa and on the next one it doubled. had radiation for 40 days. went back psa doubled again. psa is now at .3. went for concoltation for harmone therapy. had more blood work done to see testosterone levels. they are at 307. was having retention for over a year. doc said that harmone therapy would take about 7 months to complete. is that about right. they are concerned that my orginal psa was only 1.9 and tumor was already on the outside of the prostate. so psa is not really accurate in my case. i am just wondering if testerone levels are so low would would be feeding the cacer.as of april 2011 all scans were neg. thanks again for everyones help. god bless you all.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

I do not know you full history and stats, and am confused with your posts. However, the 307 level in testosterone is normal (250 to 800 ng/dL). The hormonal treatment with a LHRH agonist shot plus a daily antiandrogen will lower your levels close to 20 to 30 ng/dL (castrate level). This low level will arrest the cancer and surely improve your conditions.

The low pre op PSA of 1.9 is seen in guys with a more aggressive type of cancerous cells (grade 4 and 5). In any case, the treatment success will be ruled with the PSA tests. Image studies produced in common scans (low resolution) are typically negative in low PSAs, but you can improve your diagnosis with other tests to verify for metastases particularly in bone.

I wonder the meaning of “7 months”. The doctor probably commented on that because the PSA after starting HT does take that long to reach nadir. Even thought, the important is that you start HT the soonest and that the PSA is kept low for long periods.
Do you have any other health problem that may cause HT prohibitive?

Wishing you peace of mind.

VGama

Cherokee6
Posts: 32
Joined: Oct 2011

sfcspre,
I had similar numbers when diagnosed in November or 2009. After Radical Prostatectomy and Radiation I was placed on Hormone Treatment after Radiation and for the past 5 months I've been taking a Bicludamide pill daily. I was told by my doctor that I should stay on the hormone treatments for at least 3 years. PSA has been <.1 since Prostatectomy. Side effects have been hot flashes, breast tenderness, weight gain, tiredness, and some loss of cognitive skills with some bouts of depression which only started in the past few months, oh yes and I must not forget, I leak like a sieve. I am trying to change to a Mediterranean Diet to lose some of the extra 30 lbs. So far I’ve lost 7 lbs. This forum has been a great help and I visit it frequently to see what and who is new. I agree with the other posts that Hormone Treatment should be in your not too distant future. Best of Luck and learn all you can about this disease, it has helped me cope with it. I am thinking about asking my doctor to discontinue the daily Bicludamide pill thinking that the depression and loss of cognitive skills seem to have started after adding that regiment.

Cherokee6

60 years old when diagnosed
PSA only 2.2 at diagnosis. (Don't trust only PSA as indicator)
DRE (digital rectal exam) lumpy
Bone scan negative for mets
CT scan negative for mets
Biopsy (November 13, 2009) Yes, it was a Friday
12 of 12 biopsy samples positive for cancer
Radical Prostitectomy (December 14, 2009)
Positive margins, seminal vesicle involvement. negative lymphnodes, negative mets
Gleason score 4+5= 9
Stage T3b N0 M0
Current PSA is less than .1 (August 2011)
I ware a Cunningham clamp during work hours to cut down on leaking. (hurts after a while so can't leave it on for more than a few hours)
If I don't ware it I change pads from 6-8 times per day.
At night I get up 5 or more times to go to bathroom and sometime wake up with hot flashes from hormone treatments.
Besides that, Life is good!

tonahawk899
Posts: 9
Joined: Jul 2011

Hi Cherokee: Sounds like you and I are very similar in our diagnosis and treatment of this ***** of a disease. I would love to communicate with you sometime, even on a regular basis, but prefer to do this on a non-forum format through regular e-mail(a little more personal and supportive that way, we get to know each other, etc,) although I certainly benefit from all the guys stories and treatments, write back if interested tonahawk@msn.com, God Bless all who suffer from this disease, my thoughts and prayers are daily for each and everyone of you, Tony

Cherokee6
Posts: 32
Joined: Oct 2011

Tonahawk899,
I will send you an email.

Cherokee6

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