New Member Newly Diagnosed

Hi all,

PSA went from 2.4 to 5.5 in one year, two days later took another blood test PSA read 4.5.

Biopsy ordered, 7 out of 12 cores most left side of prostate all Gleason scores 7 but one 4-5 Gleason 9.

DRE little hard on left side. Bone scan negative, ct negative scheduled for a MRI in a week.

Met with cyberknife folks NYC. not a candidate suggest 6 months ADT, 5 weeks IMRT and 3 day HIGH DOSE cyberknife.

Met with another Radiologist Oncologist. Said needed to wait for MRI before determining treatment options. However she will reexamine the slides of the biopsy pathology to verify the gleason score.

My urologist said im not a candidate for seeds since i had a procedure called green light surgery due to my retaining to much urine. They vaporize the prostrate around the urethra to give it more room, it work!. However the cyberknife Oncologist said seeds could still be an option.

Interestingly enough I found out from my urologist when we discussed the biopsy my prostate is 20 which is not large.

I am very very reluctant to use ADT given the terrible side effects and based on studied data i saw at Prostate Cancer Treatment Research Foundation seems the results of ADT and IMRT or IMRT don't seem to vary.

Any way I'm awaiting the MRI and will keep my fingers crossed. Don't understand how i have a gleason 9 with a psa of 4.5.

Based on my research so far, cancer treatment really hasn't advanced over the many decades. Early detection is better. But, Treatment has only been enhanced by technology, the same techniques for treatment (radiation, surgery, hormone, cyro, haven't change).

I'm 66 and hope my future is brighter
Sidekick

Sidekick -

Welcome - I agree with Halbert about a second opinion with Epstein -

Was your 7 3+4 or 4+3?

I would get some second/third opinions on treatment.

Bobby Mac

Hi and welcome!

I certainly understand your reluctance to go the ADT route but it's a powerful weapon against the beast. Not everybody has the side effects so many of us complain about. For example the incidence of hot flashes and sweats was about 57%, fatigue and lethargy was about 13% and all of the other listed SEs were less than 10%. (Data from the LupronDepot package enclosure.)

Lucky me, I had both of the above side effects. My hot flashes were greatly mitigated with the drug Effexor.

Lower PSA sometimes indicates an aggressive PCa - my PSA was about 4.38 and after surgery, the pathology report upgraded me to a 4+3 with a positive node.

To All,

Thank You for all your support and advice.

Bobby Mac unfortunately one of my Gleason 7 was a 4+3 all others were 3+4. I will see about Dr. Epstein and also do research on the Ductal and small cell.

Again, Thanks all for a warm welcome.
Sidekick

Hello Sidekick,

Welcome and so sorry you have to be here!! As you read my post, because I've been on ADT-2 for 4 1/2 years (and doing very well), I don't know as much as my other brothers here.

October 1, 2012, I was diagnosis with Advance Prostate Cancer (Adenocarcinoma) high volume, very VERY aggressive metastatic (in my bones), Stage 4! My PSA was 130 and Gleason score 9. Numerous skull lesion most prominently on my right occipital lobe (skull); cervical spine particularly and thoracic spine, multiple ribs; fourth vertebral and my T12 vertebral was eaten up with cancer and I had to have 10 rounds of radiation and surgery (11-6-2012) to rebuild my T12 vertebral. My urologist told me that I had four to five years at best! 10-1-12, I started hormone therapy: I started Bicalutamide (Casodex) 50 mg daily and on 10-3-12, had my first monthly injection of Firmagon and Xgeva. Per my urologist, the first line of defense on hormone therapy would only last 6-18 months before having to go to something stronger! MY WIFE, FAMILY AND I, WERE DEVASTATED to say the least!!

Having several bulged disc, my pain doctor has found the right combination of medicine to allow the pain in my lower back, right hip/butt to be manageable!

During my journey with PCa, I've put my faith in God, a positive attitude, my doctors and medicine.

I'll keep you and your family in my thoughts and prayers!

Dave, in Bartlett, TN

Hi Sidekick-

Definitely get a second read from Epstein on your biopsy slides - you don't want to get a treatment for a disease you don't have.

Don't get lost in the weeds - ductal and neuroendocrine are VERY rare variants (there are dozens more). If you had any of them, your pathology report would have noted them already.

Some kinds of prostate cancer just do not put out a lot of PSA. That typically happens with higher grade PC like Gleason 9. This is common.

Your TURP can cause problems with radiation. You do have higher risk of incontinence after radiation because of it. Although I believe radiation is the way to go with a Gleason 9, I think you should talk to surgeons as well. Ash Tewari would be a good choice.

I don't know who you talked to about CyberKnife, but the specialist with the most experience is Dr Alan Katz in Flushing. If you can get past his lack of gravitas and the ambience of his office, the guy really knows his stuff. In fact, he just presented his 8-year study of SBRT for the treatment of high risk men, the longest running and largest (link below). I know he has treated guys with prior TURP, and he does not use ADT or external beam with it:

Management of high-risk prostate cancer with 5-treatment stereotactic body radiotherapy: Long-term results.

The radiation standard of care for high risk is external beam with a brachytherapy boost, and it gets great oncological results. But it does incur more urological side effects, and your prior TURP is definitely aa risk factor for that. The undisputed master of this in NYC is Michael Zelefsky at MSK. He has done more than anyone, and if you are a candidate for it or not, you should feel comfortable taking his word for it.

Update, Had the biopsy verified and the results of the MRI just came in.

Results of biopsy confirmed gs 9 in one sample 6 others one 4-3 and 5 are 3-4.

The MRI shows that the cancer is contained in the prostate and has not breached the wall.

I am given two options by the urologist robotic or imrt with 2 years ADT.

Have not spoke to radiologist yet but she originally said the same if MRI was negative.

Both are reluctant to recommend seeds because of my green light surgery 2 years ago.

Will put another post up inquiring the expereince of the forum on having seeds sfter green light.

My next step will be to schedule a consult with Dr. Zelefsky at MSK who someone recommended as the best for brachy therapy for his opinion.

Hi Sidekick, welcome to the forum. I've added you to the G9 Crew roster. Here's a link to the thread, with many people there and links to many of their initial posts:
The Gleason 9 Crew -- Part 2, continued.

With even just the one core showing G9, that is in fact what your case is considered. Prostate cancer is multifocal, with possibly several separate small tumors developing. You're lucky they nicked the G9 sample. Some folks are surprised by that upon pathology. The treatment decisions can be rather different based on the presence of the Type 5 cells.

Tough decisions, aren't they? It seems like there's never quite enough information to be sure. You're doing a lot of research, and that's important. Once you decide, carry on.