discouraged

I’ve been lurking and learning from you since my husband’s robotic surgery on July 1.  First, we were stunned that 16 months after a clean biopsy, we could be facing Gleason 9 cancer with 70% involvement, but were thankful for clean scans.   Based on the pathology at surgery, we knew he would require radiation to clean up the lymph node involvement discovered.  Today he received the first post op PSA results of 4.1 (Bostwick—see how much I’ve learned?)  Not what we wanted to hear.  We knew it was aggressive stuff, but were hoping for better results.  He really doesn’t want to have HT, but may have to add it to the mix.  I need him around!  We're both pretty bummed out tonight.

 

He had taken finesteride for years which masks the PSA by 50%.  Could today’s result really be 8.4 or is the “finesteride effect” out of his system by now?  The PSA test was 9 weeks post op.  Could we realistically hope for a decrease with more time passing?  Tuesday we will see the oncologist who was optimistic for a cure when we saw him in July.  He had told us a PSA of .2 was what we wanted.   

 

The next person who tells me prostate cancer “is not a bad one to get if you have to have cancer” may get popped in the mouth by this peace loving grammy!  God bless all of you—you have helped us more than you know.  See, I feel better already.

DYank
Welcome. You've landed in a good place here. Lots of great,knowledgable people here. Those are some tough stats. Remember... They are only numbers. You will notice stats& numbers of all kinds here. Everyone reacts differently. HT is very doable...I know. Stay positive and do lots of research

Those are not good numbers, but there's lots of 9s here who have done well for a long time, so don't think it's a death sentence. Yes, you've got a battle on your hands, but there are a bunch of new, good weapons to fight with, and more coming online all the time. I wish you all the best, and please share the journey with us. There's lots of good advice to be had here from many who have been down the same road.

Give the radiation and HT a shot ...You have a 50-50 chance, that's a lot better than no chance....Yes, the HT is no fun at all but it sure beats the alternative..At the minimum, it will slow the beast down and buy you some TIME, which is the name of the game now...

It might be useful to try the Choline or Acetate C-11 scannings or the Feraheme at Sand Lakes (Florida) scan methods. They can detect nodes way better and other areas way better than standard ct and bone scans and usually trump MRI type scans. The first one is at Mayo Clinic-Minnesota (around $3,300 needed) see Dr. Kwon, the other is in Arizona (around the same $3,300) insurance not covering these just yet. Sand Lakes scan can be covered by insurance, but not covering the 'agent' used, so $900 you have to pay for that. MRI scans should be covered by insurance and is better than ct and bone scans, usually. If you are going for SRT radiation these scans could be really useful as to is the PCa within the radiation field or perhaps one distance spot known that could be radiated, also (somewhat of a gamble for cure, but you could increase your chances for such). Lympnode could be radiated or removed perhaps.
Nothing over simplistic in dealing with this, hope you do very well. I have seen others get these scans and they found stuff the other scans never detected, so it is not hype it is for real and later will become the standards in scans.

HT therapies with or without SRT are normal standard practices, but there are more choices than usually mentioned to you and it is wise to know what is possible and future sequences of drugs used within the fight on this.

DYank said...
Signature didn't come through so here's more info:
65, fit and athletic
12/11 PSA 2.4
4/12 clean biopsy
12/12 PSA 4.5
4/13 PSA 8/5; biopsy showed 70% cancer
7/1/13 DaVinci surgery
Gleason 9
T3a, N1, 38 grams

I have not figured out why sometimes on a reply, the box to check add signature appears, and sometimes not, but when you notice it, you can click the edit button on top right on your post and that gives you the opportunity to add signature as well as to correct typos, and then hit submit button.

"- Notify me of reply postings by e-mail.
- Include signature (can be modified in the profile section of My Profile)."

You may find this webcast helpful

www.cancercare.org/connect_workshops/361-advances_treatment_metastatic_prostate_cancer_2013-09-10

Finally though Tall Allen gave you good news that your PSA is not double what it appears, with advanced PCa theree is sometimes not a lot of PSA generated.

I too am Gleason 9 (4+5) and the highest my PSA ever got before the biopsy as opposed to at recurrence was only 3.68.

LupronJim

Sorry to hear about your numbers....you have lots of tools available to control and beat this beast. since you are in N Va. I would suggest a visit to Dr. Myers in Charlottsville...he is one of the best prostate cancers oncologists in the country...deals primarily in the tough cases.

Everybody's experience is different but I was able to drive myself to and from all my radiation treatments without major problems. Fatigue is a common side-effect of radiation and if his drive to and from treatment is lengthy he should be careful about becoming drowsy at the wheel. That wasn't a problems for me -- most of my drowsiness was later in the evening -- I would fall asleep during prime-time TV shows and my wife would have to tell me who-dun-it.

What was more of a problem for me was continence problems. They like you to have a full bladder when they zap you and to do that you have to drink, drink, drink before treatment. I live about 15 miles from the cancer center where I received my radiation treatments and I would sometimes have to stop three times along the way home to pee (in lighter traffic I could get by with only one stop.)

Before my first treatment I bought three cases (plus one more bottle) of 20oz sugar-free Gatorade and stashed them in my trunk. Each day before I got in the car to drive to treatment I would grab one and drink it during the trip. That way I would arrive with a reasonably full bladder and the bottles in the trunk gave a visual gauge of how many treatments remained. It was really a good feeling to pop open the trunk and see only a few bottles left, and that that last bottle of skanky-tasting grape Gatorade went to my head like fine Champagne.

Welcome DYank from another G9, sorry to hear of the recent setback. You've gotten a lot of great advice already and the only experience I have to share is with HT... for me it was a blessing; it not only got my aggressive cancer in a temporary check, but also provided me with some bone pain relief. Yeah, the hot flashes and fatigue are bothersome, but I'm happy that there was something out there that has provided me with months to make decisions and study, unlike some other illnesses where you only have days or hours to decide on a treatment plan.

Assuming you do decide on starting HT (Lupron), your doctor may have your husband take a pill like Casodex (bicalutamide 50mg) for 10 days prior to the 1st shot, this is done to avoid what is called a flare effect. This article is a little dated, but lots of info on flare... www.ncbi.nlm.nih.gov/pmc/articles/PMC1476081/

Hope your upcoming visit with the onco is an informative one, come back and let us know how it went.

Will be keeping you both in our thoughts and prayers.

Tuesday's update:
PET scan scheduled for tomorrow afternoon with a follow up appointment for results on Friday. We are thankful for quick timing on this. Seems like mostly we hurry up and wait--at least not so long this time.
The RO gave us best case/worst case scenarios. Best case: localized node or nodes still only in the prostate bed that gave off the PSA. Worst case: sprinkling of bone mets all through the body. If there are 4 or fewer tumors in the bones, they can be treated with the cyberknife. We'll know soon.
Fingers crossed.

Glad to say that we are much encouraged. Things are looking up. Best case scenario--PET scan results are good. PSA looks to be coming from microscopic area in prostate bed. Beacons for the Calypso System RT will be implanted soon, then radiation will proceed. Next PSA right before radiation. We've got Dr. Myers number if needed.
We appreciate the wisdom and encouragement from you all!