Prostate Cancer

Hello, I'm new to this blog or what ever it is called. March last year .I was unable to pee, got a catheter and a prostate biopsy. I scored a Gleeson 9 I started Lupron around May and radiation around August. I finished the Rad Nov and feel very good , better than I have in several years. My prostate is shrinking, I'm beginning to pee and according to scans I'm prostate cancer free. Because of an insurance problem I've had to change urologists which may save my life. My new urologist is very concerned about the Gleeson 9 and set me up for a radio active fluorine/glucose scan which suggested I had cervical bone cancer. I have a new oncologist who then sent me in for a MRI which confirmed that I have bone cancer in T2 and T3. I have no symptoms at this time, am still playing 6 sets of tennis a week, weather permitting. My oncologist is talking about another round of rad aimed at those 2 vertebrae. He is discussing my case with a tumor board. My last PSA was 0.02. My PSA before all this started last year around Feb was 5. I'm also taking cannabis, esiac tea and was following a ketogenic diet. I've read some new diet stuff which suggests that the ketogenic diet is ineffective. I may try a diet more like what Dr Kelley is doing if I can get more information. I much prefere fresh fruit and carrot juice to vegetable fats and protein. I'm a vegetarian. Well, that is my last year in a run on paragraph.
I would be interested in information, thoughts, experience...

thanks for being here
david edwards

Thank you, where is the G9 thread check in?

Welcome to HW, sorry you need to be here.

More of the G9 folk will be along to comment. So far it sounds like you've had good treatment. The bone cancer is concerning, but a little RT there might do the trick. Let us know what happens there.

While diet plays a role, it can't do the whole job. On the surface it looks like you're doing a lot in the area already. I am not sure you need to be doing more - just stick to your plan.

Andrew

Hi and welcome. I'm G9 and finished radiation( IMRT)On Oct 26th. I've been on Hormone depravation therapy (HT) since June 17th and will continue on it with my last 4 month shot Dec.2017.
Did you have a bone scan and MRI before your radiation? I'm wondering if what you have is metastic PC to the bone? If you could give use more info like your age ,where you are located and biopsy report info it would help a lot. I'm new to this( sort of) but guys with much knowledge than me will be by shortly,if not already as I'm very slow at typing.

Just wanted to welcome you from another G9 guy.


The Artistic One - Mark

So as I read your signature I note that you had a somewhat low PSA 5 (although above 4) and you had G9 (5+4) My PSA was 3.42 and I turned out G9. I've always wondered if having a lower PSA and higher gleason score would make a difference after treatment on how they read PSA for recurrance? It seems strange to me that you had a clear bone scan before treatment and now have spots on the spine. PC usually will metastasize to the bone. How did they come to the conclusion it is bone cancer and not PC

I'm far from knowledgeable about this but with your low PSA 0.012 maybe it would be a question to ask about the initial lower PSA and higher G9 .

Others will come along that know so much more. Mine is just a speculation but I find interesting.

-Mark

Hi aromasde and welcome to our community. I have to say I admire your positive spirit!

But one thing I can't tell: is the cancer in your back considered mets from your PCa? I'm assuming it's not since your PSA is so low. What kind of radiation did you have? And how long do they plan on keeping you on Lupron?

I haven't posted in a while. After 3 more scans the Dr team has decided my spine met's are old injuries and not cancer. They based this on their ability to read scans and in my mind it seems reasonable as the sites T2 and T3 I strongly suspect were injured when I flipped my motorcycle about 8 years ago breaking my shoulder and other injuries. I never went to a doctor. I also played 10 years of Rugby over a period of 40 years playing my last game in 2009. I feel great, I'm close to a good weight for this time in my life about 175, playing 6 or more sets of tennis a week, there is no rugby where I presently live. I now know how sick I was as I never realized it 8 months ago. I truly sympathize with those suffering and I wish I had some secret to health that I could share. I am still using cannabis suppositories, esiac tea and Lupron. all I can say is take charge of your life, find doctors you can trust and by doctor I don't necessary mean people who have a md certificate from some prestigious school, I mean true healers who care and be very wary of Big Pharm. Thank you all being here and sharing. I felt better just being with you. My doctors have decided I'm cancer free!!
My love to you all
David Edwards

aromasde said...
...My doctors have decided I'm cancer free!!
...

That's quite encouraging! With Gleason 9, that proclamation is pretty rare. We look for "durable remission", and many go a very long time with no more issues.

Do keep track of your PSA. Quarterly usually for 2 years, then every 6 months to 5 years, and then annually. G9 is notoriously able to recur, which is why it's called "high risk". Not to throw any rain on the parade, certainly not! Just a reminder not to be overly dismissive of the risks.

Here's to a lifetime of low numbers!

Currently I'm doing monthly PSAs. I see my Dr today for a report and another blood draw.
Thanks all
David E

Eat2bwell,

There is a big difference between using PSA as a screening test for men who have not been diagnosed with PCa and its use as a PCa monitoring method for men who are known to have PCa. Please do not confuse the two.

For David, and myself and all the other men who have been diagnosed, PSA is the best way to monitor the cancer. In my case I have been tested every three months for the past six years and will continue to do so. That David's oncologist is testing every month makes perfect sense given the high risk G9 diagnosis. For most men who have been diagnosed they will be tested no less than annually for the rest of their life. PSA becomes the early warning system for a recurrence of the cancer and is very important.

Hello too all,
It has been a while since I've messaged. I've spent the last year and a half getting healthier and feeling better than i have in many years. I'm going to post a letter I have just written to my doctor rather than rewrite it. I would be very interested in other opinions and experience of abiraterone acetate and prednisone. I'm sorry i haven't been more involved, but i haven't felt that i had much to offer. I see this changing.

Thanks for all you are doing and going through.

David Edwards

Dear Dr Campbell,
I want to share my thoughts and feelings since my last appointment. Back in April 2016 when I received my diagnosis of Gleason 9 prostate cancer, I did not understand the severity. I did some reading and learned more about cancer and I now have a better understanding of how little I know. None of my doctors told me that they might cure my prostate but that prostate cancer maybe of Gleason 9 severity or maybe all prostate cancer will metastasize to bones which I believe as being worse.
After about a year of treatment, including 4 visits to the ER I was told my prostate was cured and since that time I have been getting progressively healthier and stronger. Yesterday I did my first chin up in 3 years.
As you know I have been getting my PSA checked regularly since the April 2016 time when it was around 5. Then after my radiation treatments it dropped to 0.02 or so and stayed at that level until the hospital changed labs when it went to <0.1, 0.1, 0.3 and finally 0.6. And, you thought it a good idea to get a scan. I wish to thank you for that call and I agree with your action.
The report from this latest scan used the word intense to describe tracer uptake in locations; manubrium, sternum, 10th rib, left humeral diaphysis and a vague uptake in L2 vertebral body. I understand all of these locations suggest metastases of my prostate cancer. My confusion comes from previous scan results.
The first scans I had in 2016 reinforced the biopsy results and in addition suggested that my cancer may have invaded my bladder, which made surgery unlikely. The scans also suggested I may have a few metastasized lymph nodes.
Then in January 2017 I had a few more scans that suggested that my T1, T2, T3 and T5 had metastasized prostate cancer. It was decided that since my PSA was very low that these sites may have been due to my life’s injuries and we would monitor my PSA. I don’t understand what happened to all of the possible metastases that showed up before this last scan. The last scan mentioned the previous scans but made no comment as to why everything changed so drastically.
So, here we are now, my PSA is definitely rising. You have suggested two drugs Zytiga and prednisone. The side effects of the Zytiga seem tolerable and according to the paperwork you gave me “side affects are almost always reversible”. Prednisone, however, is totally different. First, I want say, I had a friend in the 1980’s who committed suicide because he could not tolerate the side effects of this drug. In reading about the different side effects it is my impression that prednisone generally causes organ damage and other body problems and often needs it’s dosage increased to continue to provide the treatment level needed. It needs to be carefully monitored for withdrawal if it has been taken for more than a week.
My understanding and interpretation of what you told me is my metastasized prostate cancer is incurable. You can treat my symptoms with the above stated drugs and when they stop working you can use more damaging drugs. I need to think about this and get more opinions. Thank you for all the help you have provided. I hope that we can talk about this at my June 22 appointment.

Sincerely,

David Edwards

David
Thanks for sharing your jour journey! Hope you keep up with tennis ! It’s quite inspiring the fitness and healthy lifestyles you have had and still PC struck and has tried to take a bite off your good life. Keep up the fight.

Thank you for the replies. I was hoping for other peoples experiences with prednisone and Zytiga
Thanks all