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Posted 11/20/2008 2:51 AM (GMT 0)
Hi all.

Best regards to each of you posting. I am new to this site and have been encouraged from reading your information. I named this ReStart because I am restarting the dread of concentrating my efforts on beating this thing.

My Bio; I am 54 and dx w/PCa at 53, Mar 07. Followed PSA for 8 years at annual physicals, hovered at .6 - 1.4. DRE was suspicious, lumpy on left side all along. Biopsy 2001=negative, Biopsy 2004=negative. Feb 2007, my PSA rose to 2.5, this meant another biopsy. BOOM. 4of4 samples left side positive. Right side negative.

Gleason 4+4=8.  Wife and I agreed Surgery was the only option for us. Researched and learned about Robotic Surgery and called and was scheduled with Dr Menon for 6 weeks post biopsy as soonest opportunity.

 June 18 2007, RP complete, walked out of hospital 25 hours after the procedure. Cath for 11 days. Continent after about 6 weeks. Kegals are the key. Sexual function was showing good signs as soon as 1 month out and started to get good at 2 months. It then levelled off as unsatisfactory and I went for injection therapy and Cialis. This was good until I had a near bad experience with a priaprism that lasted 3 hours and I sat on frozen peas for an hour to resolve it. No more injections but that was ok because things were on their own by that point. An occasional Cialis and WaLa! Now 15 months later I am good to go.

The time bomb. Along with all this good newa the PSA has been checked every 3 months.

.008/ .028/ .062/ .074/ .16/ .2-now. Here we go, the threshold of "detectable".  Friday is my appointment with the Dr to discuss plans and options. I expect a recommendation for HT and maybe a recommendation of RT sooner or down the road. It seems that many of those posting had begun the adjunctive treaments before now.  So I begin the journey down this road with you and will be hoping you can offer some experiences and questions that we can share. Be in touch

Don

Posted 11/20/2008 3:26 AM (GMT 0)
Sorry you have to be on this road, but glad our roads intersected at HW. There are a lot of members with similar experiences to yours and I am sure they will be posting shortly. My father had a RP, RT and is on HT. The radiation part was not near as bad as he had expected. He had a little diarrhea that cleared up with Imodium and that was about it. The HT he has been on for a year now and he hates it, BUT, he has had undetectables PSA's and is hoping for a lifetime of them. Please keep us posted as you progress and don't lose hope!
Posted 11/20/2008 3:46 AM (GMT 0)
Hi Don,
I know a lot of men in your situation and they continue to do well. I am nearing my last Lupron before we "restart" completely free of treatment. Your velocity appears to be half a year before doubling, if I read your histogram right. Maybe setting a target is a good thing before commencing the ADT. But also have you consulted a radiation oncologist? Perhaps some mop up work is in order. Also, ask your oncologist if he can run a CTC ~ circulating tumor cell test.

I wish you the very best and hope you do well into the future.

Tony
Posted 11/21/2008 2:54 AM (GMT 0)
The pathology: Well established EPE in the left posterior mid base. Margins negative. 1 of 4 lymph nodes positive( right pelvic). Seminal vesicle invasion. Gleason 8 (4+4) pT3b Prostatic adenocarcinoma.
20% of prostate contained tumor.

Tony, Thanks for the tip on CTC. From my reading, I knew you would have an insight. I will mention at my Dr.appt tomorrow.
We have been watching the PSA rise and optimistically waiting for it to flatten and it just hasn't. A steady diet of tomatoes and green tea, vitamins and such. The odd part is there have NEVER been any symptoms or discomfort. Testing was only routine. It is so hard to believe I am here.
Don
Posted 11/21/2008 2:10 PM (GMT 0)
I am sorry to hear about the rising PSA's. That has to be my worst fear and I can understand your anguish. We never know what the future will bring. The thought of recurrence is always in my mind. My thoughts are with you and hope that others that have been down the road you are about to travel will provide you with confidence and strength to face the future, from what I read and understand, you have great treatment options available for successful treatment of this demon.
Randy
Posted 11/23/2008 4:47 PM (GMT 0)
My trip to Dr on Friday gave me the info I expected. A local recurrance is most likely, therefore, RT. Have my appt w Oncologist Monday. What are the RT Treatments like. I expect to have IMRT at Beaumont, Royal Oak, MI
Can't wait to get started again.
Don
Posted 11/23/2008 7:05 PM (GMT 0)

Hi Don,

Sorry that you are having to deal with this again. I have just completed 45 IMRT/IGRT sessions about 9 weeks ago. Details on the treatment are in my signature. As noted there I had "full pelvic" (FP) as well as prostate focused treatment. The last week of the FP (week 5) I developed some diarrhea and urination problems. I also had some fatigue that I feel is more related to the diarrhea and getting up at night to urinate. I took imodium for the diarrhea and flomax for the urination. As soon as the FP ceased the diarrhea cleared up. And the fatigue diminished enough to continue my exercise routine thanks to the flomax letting me get a good nights rest. I continued on the flomax until two weeks after last treatment. I have had no further side effects as of today. However, I am keeping my fingers crossed as I have read that there are late occuring SE's after radiation from three to nine months out.

Each session lasted about 20 minutes. Took longer to get my pants up and down than the radiation exposure. :-)

Just curious if your doctor(s) recommended hormone therapy as an adjunct. Also did you do the CTC that was suggested and what were the results?

Don, I wish you the best and a successful conclusion to your treatment.

Regards,

Don H. (for clarity)

Posted 11/23/2008 7:40 PM (GMT 0)
Hi Don,

I am sorry to hear about your numbers. I too had the same news over the last 10 months. I got started on my IGRT on the 17th, last Monday, so I have 5 down and 33 to go. I was glad to get it under way, the sooner we start the sooner we will finish. They were about as I had expected with it taking longer setting up,undressing and dressing than to get the treatment. They do a CT scan everyday to get mapped out with the plan. I am in there about an hour more or less. No side effects yet and I have my fingers and toes crossed....lol. I wish you all the best with this next step and my prayers are with you. Keep the board posted on everything.

David
Posted 11/23/2008 11:10 PM (GMT 0)
Thanks for the hopefuls, and I wish all the best to you too. I did not get the CTC, I did mention it and the Dr said it was not avail to me, that it was an experimental test.
Tomorrow is the meet with the oncologist. actually looking forward to it.
Don
Posted 11/23/2008 11:37 PM (GMT 0)
Don,

You are headed to the best place on that end of town I can think to go. BORO has a great facility with some of the best minds in medicine there are. Good luck and we wish you all the best.

Swim
Posted 11/24/2008 10:46 AM (GMT 0)

Hi Don,

I had 38 treatments of standard IMRT and only a bit of fatigue that lasted a couple weeks after treatment.  My case is typical for post RP radiation treatment.  I think the 7 extra treatements a guy gets when they still have a prostate have the most side effects.  My guess is that they will recommend 38 for you, too.  Your doctor probably does not know that CTC is now FDA approved, having completed it's phase II and III trials since last March.  That or your insurance won't pay for it yet.  But this is not an experimental test anymore and is all over the internet.  My oncologist, Dr Nick Vogelzang, was involved in the studies about it and he is mentioned in the JNJ version of the FDA release notice: FDA Clears CellSearch use for prostate cancer My CTC was zero and was covered by my insurance.  This might be a better question for the oncologist.

Anyway, it's probably not an issue and RT is the right next step.  Perhaps even hormone therapy.  I wish you the very best.

Tony

Posted 11/24/2008 3:05 PM (GMT 0)

Hi Don and Tony,

RE: CTC test. I am assuming that this is the same as the Prostascint? If not fill me in some. I asked my oncologist about taking this test prior to beginning my radiation and he said that it would not make any difference to the recommended treatment and that the test was expensive. I took it as something that might be nice to know from a patient's perspective but was not of much use to the doctor. I was already on the hormones at the time.

Regards,

Don H.

Posted 11/25/2008 2:45 AM (GMT 0)
Hi Don,

I know you will be going for the RT, I wish you the best. I read that you said you were on a steady diet of tomatoes and green tea. When my husband's PSA was elevated and they were trying to lower it before doing a biopsy one of the foods on the DO NOT eat list was tomatoes, along with chocolate, caffeine and avocados. Just curious who advised you to eat tomatoes. Good luck with your treatment.
Posted 11/25/2008 7:53 PM (GMT 0)
CTC is different than a prostascint. But it is not main stream ~ yet, and not all centers can do it. What it does is physically count tumor cells in the blood. This will be a more valuable test in the future as it is still new when used for prostate cancer. It has also been used for colorectal and breast cancers. Recently it has been modified for use in prostate cancer as well. Most doctors do consider it experimental, so I'm told. With it's primary use to find a tumor cell count fast, it is considered the most effective way to measure treatment performance on the fly. PSA is still the gold standard but it could take weeks, sometimes months to get results. Still CTC is an emerging technology and if your center has one then ask about it.

Tony
Posted 11/26/2008 3:59 AM (GMT 0)
Quick Note, Thanks for the Info. On the CTC, Dr said it tells how many cells might be floating but diagnostically cannot tell you where they are coming from.
Tomatoes , especially cooked are rich in LYcopene
Am now getting the pre screens and profiles for the IMRT. CT, MRI and "simulation" is set for tomorrow.
All the best to my new friends
Don
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