Got the word from our urologist this morning...

husband's PSA is now 0.3 (went up .2 in 1 month).  So, next Friday, we meet with a radiation oncologist to talk salvage therapy.

According to the urologist:

1. PSA is still low but "something is definitely going on"...the sooner we move, the better
2. PSA will be retested in 1 month.  If it's still 0.3 or higher, we push the button (I do not plan on waiting 1 more month to get things started)
3. Urologist told husband that he half expected this to happen at some point due to EPE on path report
4. Re-reviewed surgical path report and said that he (the doctor) is not worried about the outcome.  If PSA had been 0.3 three months after surgery, he'd be worried.  Frankly, I was shocked that the PSA number jumped so much in one month but apparently that's the way it goes sometimes.

Obviously, this latest news doesn't make us happy but, I must admit, that in my heart I knew this would be the case eventually.  Part of me is relieved that now know what's going on and have a plan of action ... I think I would have gone bonkers if we had to do monthly PSA tests and "watch and wait" to see if there's anything definitive.  At least we have something we can deal with. 

 

Will keep everyone posted once we meet with rad onc next Friday (October 2). 

Sephie,
Being a T3 guy, I have been preparing my self for a similar outcome if and when it comes. I wish your husband the best with his next step. Will he be doing HT as well as the radiation?

Dear Sephie, so sorry to hear the news, had a little feeling it might be heading in that direction. Sure seems to be more of us on the reaccurance path. Good news, is that your husband's movement upward took some time after his surgery to start going up, instead of right away.

I agree with you fully, after me meeting with 3 radiation oncologists so far, and having picked one, that waiting now to watch it rise from .3 makes no sense. So it sounds like you have accepted the reality of your husbands reaccurance and have a game plan developing. I am slight ahead of him in executing the plan, so I will keep you posted.

As usual, my very best to you and your dear husband.

David in SC

Sephie, since I had a terrible track record pre-surgery of psa velocity, and since I had reoccurance within six month of surgery, all 3 of the radiation oncologists said that it would be dangerous (that was the word they used) for me to sit around and wait and watch it go up.

You and John (glad to know his name) make a good team, and I am sure you can work through this next battle. Took me awhile to resign myself to the salvage thing, but John and I are almost the say age, and if he's like me, not quite ready for the "check out line". lol.

I will continue with my annoying detailed posts on this next stage of my journey, and it will help give you an idea of what may lie ahead for your husband.

My first real zap of IMRT is still scheduled for 1130 on Monday, October 5th. Still not sure of the total gys. to be used or the number of treatments, my dr. is still working up the procedure from all the CAT scans they took on Monday. And I got 7 black tatoo marks in my nether region, about the size/shape of freckles. This is on a guy that is virtulaly free of any moles and almost no natural freckles. lol.

Keep the spirit going, Sephie, your attitude has helped me out more than once over the months, trust me.

David in SC

Sephie, that was the step I went through Monday, was all the mapping work to determine the pathing and routes for the machine, and how much radiation at that spot and this spot. The last we spoke, she was thinking in terms of 70-72 gys total, probably spread out over 35 days, or 7 weeks. If there are no delays or problems, should be done a day or two before Thanksgiving.

Please stay in touch. My wife and I were suppose to go to San Francisco this summer, for the honeymoon we never had back in 1974. But couldn't do it for a number of reasons. Going to try next year. She has never been west of Texas in her life. So I want to be well enough and back working again so we can pull it off.

David in SC

Sephie,
I had an RRP around the same time as your husband. I had a positive margin and all my tests were okay until a little over a year. Then it jumped. I went through 37 IMRT treatments and will be retested in November. It was a piece of cake for me. The side effects were treatable and almost gone now. I wouldn't wait too long. The success rate is a lot better with the lower numbers. Thank God it is another opportunity for a cure for the surgery people. Good luck to you and God bless.

Hi Sephie and John.  We trust the follow up treatments will be just what is needed to finally zap this thing once and for all.  Sephie, thanks for all you do to support John - I know he appreciates it.  Couldn't do without my wife - like you do for your John she takes very good care of me.  David

Geezer, thank you for your kind words. May you have 3 years - plus as many more as you need - of zeros! I'm happy if my posts give courage to those who need it.

David (CPA), my husband is everything to me - my best bud, and the person I trust the most in the world. I wouldn't think of not being there for him - I know he would do the same for me (and then some).

Magaboo, I have no intentions of waiting.

I'm (gently) trying to convince my husband that waiting for a 3rd PSA could make a difference in how successful the SRT is for him, especially if it jumps another .2 points (that would put him at 0.5). I want to strike early and am hoping that both of the radiation oncologists we have appointments with next week will recommend RT now rather than wait for the 3rd PSA test result. One of the problems is that the urologist (whom John trusts completely) is recommending waiting for the 3rd test - I suspect that urologists do not fully understand the importance of starting SRT when the numbers are low. I've explained to John that HE is in charge of the situation...certainly listen to the doctors and consider their opinion but we do not have to wait for the doctor to give us the go-ahead. I also tried gently to explain that this is a second chance at a cure and we have to take every advantage if we're going to lick this thing.

I have my work cut out for me convincing my husband that timing is critical. Last night he said that if the next PSA test came back at 0.3 (no change), then maybe he should wait another month and retest - oh no you won't (I said that in my head)!

Colin, I expect that if one or both of the rad oncs suggest starting SRT now rather than waiting for another PSA test, our urologist will defer to them as the experts. The urologist is not dead set against it but did suggest waiting for the 3rd PSA test. As John's current PSA is "on the fence" and I'm concerned that waiting another month might bring him to the threshold of 0.5, I tend to think strike now. My husband did say that if the rad onc says start treatment now, he will.

A bit anxious at this end but, the way I figure it, it would be tough to appreciate the blessings in our lives if we didn't have the crap to put it all in perspective.

To all: I'm making a list of questions to ask the rad oncs next week. So far this is what I have are: equipment used, dosage, side effects (short- and long-term), timing (start now? wait for next PSA?). I also plan on asking each doctor how may PCa patients they've treated and what their success rates have been so far. Any other questions I should be asking?


Be well, my friends.

Dearest David, what would I do without you!

I made a few phone calls this morning: The first to Sloan Kettering. The lady I spoke with was an absolute doll. Unfortunately, we won't be able to go there as they do not take our insurance and the cost would be $1500 to $2000 for a consultation and review of the path slides. However, she was very quick to recommend that I contact Columbia Presbyterian/NYU as they too have a comprehensive cancer center and might be able to help with our insurance issue.

The patient referral contact I spoke with - Joyce - was one of the nicest people. She was able to do a search by insurance company and found one medical oncologist and one radiation oncologist at the main "campus" in Manhattan who take my insurance! She gave me names, phone numbers, areas of expertise, etc.

I called John at work and told him that we can get a 3rd opinion from the 6th ranked hospital in the United States. He is inclined to see what the 2 radiation oncs we'll meet with next week have to say and will go to Columbia if a 3rd opinion is needed (e.g., if both rad oncs don't agree that the time for SRT is now).

I offered to make an appointment at Columbia for the week after next - if we don't need the appointment I can cancel it. He will think about it this weekend and will decide.

David, I'm a bit worried because I don't think John fully understands that his situation calls for quick action. My dear husband is not good at making snap decisions, and is a bit of a procrastinator. In this case, not the best way to be. Throughout this process, I have been the one to do the research and to share information with him along the way.

Now I have to go to work...will be a few minutes late but what the heck! Have a great day - I'll be checking this board during the day.

Lots of hugs and kisses from Sephie & John

David, I would actually love for you to speak with my husband.  Perhaps we can set something up over the next week or so, especially after he sees the rad oncs.

I know how my husband's mind works and I suspect that he is well aware of the importance in the next step...he's not too good at verbalizing (whereas you can't shut me up sometimes!). 

Like you, I expect both rad oncs next week to tell us "pull the trigger" - at least I'm praying that's what they tell us.  Of course, should the PSA come in below 0.3 next time and we've already begun SRT, my husband will likely have my head!

Take care.

Hi Sephie,

Thank you for posting and others for adding information. My situation is similar to your husband's in that our psa and velocity seem to be comparable. This morning I met with my urologist regarding my latest reading and bone scan which I had moved up by 3 weeks from the prior schedule. The bone scan was clear and the psa remains at .2 ng which means there hasn't been a rise since the .2 reading in the beginning of August. At first he was going to have me retest in 3 months but after some discussion we decided to keep me on a "short leash" and retest in 6 weeks. He wasn't going to be surprised if it went up and would refer me to a radiation specialist once it did.

It was comforting to me that he added that he felt that any residual cancer would be addressed with the radiation while the psa was at this level. I intend to push forward as soon as my reading increases again.

Our best to everyone,
Jake

Very good advice there, Mal, there's a lesson for all of us in those words.