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To wait or act?

HumboldtGuy
Posts: 5
Joined: Aug 2010

Like many I have been reading comments on this forum for months, learning much about dealing with pca. I finally decided to "jump in" and join the discussions.
Here is my background - sorry if I included too much or too little:
Age: 67
Biopsy June 2007. PSA=6.0. 2 of 10 cores contained adenocarcinoma; 1 with 30% involvement, 1 with 8% involvement. Gleason score of each core 4+4=8. No evidence of extraprostic extension, lymphovascular invasion, or perineural invasion. Confirmed by second pathologist at Loma Linda University Medical Center Aug. 2007
Stage: T1-C
Bone scan June 25,2007:"negative"
Prostascint scan Aug. 2007: "mild focal uptake in the prostate gland without other abormal activity in the pelvis or abdomen."
DaVinci radical prostatectomy Sept. 2007
Post-op Gleason 4+5=9; Stage pT3b N0 M0; margins negative
Post-op PSA history:
Nov. 2007: 0.08
Feb. 2008: 0.09
May 2008: 0.1
Nov. 2008: 0.12
Feb. 2008: 0.16.
May 2009: 0.17
Jan. 2010: 0.26
May 2010: 0.29
My urologist says that if (when) my psa reaches 0.4 he will urge me to begin hormone therapy. From comments on this forum and other sources I am reluctant to begin this treatment.
Since psa doubling time and Gleason score seem to be significant factors in deciding what to do, I found a site (http://ar.iiarjournals.org/content/30/5/1633.abstract) to calculate doubling time and another (http://urology.jhu.edu/highlights/10.php) to calculate survival rate based on doubling time and Gleason score.
One calculates my doubling time as 26.1 months and the other chart lists the odds of my surviving 5 years after surgery at 98% and 10 years at 86%. These numbers cause me to be wary of starting another treatment when my psa reaches 0.4. Any thoughts would be appreciated, and sorry if this post is too long - first time.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Humbolt,

Welcome to the forum and so sorry that your PSAs are indicating a recurrence of PCa. Besides the doubling time, you also ought to calculate your PSA velocity which many urologists feel is a more significant metric than just the PSADT. The Sloan Kettering Cancer Center website has some nomograms which calculate this for post-RP patients. They also have a predictor about how successful post-RP radiation might be. (http://www.mskcc.org/applications/nomograms/prostate/SalvageRadiationTherapy.aspx)

While your urologist is holding out for a PSA of 0.4 ng/ml as a decision point, the trend in many of the studies I have read on this subject show that an increasing number of urologists and radiologists believe that 0.2 is the deciding point...and you've already passed that. Not sure what your urologist is waiting for as the history of your PSAs show a steady increase since your RP. I believe the theory is that the earlier you hit the recurring cancer with radiation, the better your odds of getting the residual cancer cells before they metastasize, but there are a lot of differing opinions on this subject as I'm sure you've figured out from your studies.

Best of luck sorting this difficult choice out. I hope you keep us posted on your progress.

============================
Age: 59
Dx: March 2010
PSA @ Dx: 4.3 (Latest PSA = 2.8 after elimination of dairy)
Gleason: 3+3=6 (confirmed by second pathologist)
Biopsy: 1 of 12 cores contained adenocarcinoma at 15% involvement and no evidence of perineural invasion
DRE: Normal
Stage: T1c
Bone scan and chest x-rays: Negative
Prostate Volume: 47 cc
PSA Velocity: 0.19 ng/ml/yr
PSA Density: 0.092 ng/ml/ccm
PSA Doubling Time: > 10 Years
Treatment Decision: CyberKnife radiation treatment in June 2010. Side effects: None

Trew
Posts: 891
Joined: Jan 2010

Those are nice numbers- no need to hurry anything as far as I can see. I mean surgery can be very rough with major lifestyle changing side effects. On your own, take a serious look at proton therapy as an alternative to surgery. Surgeons don't like proton therapy, but lots of very educted patients do like it. Go to Loma Linda U proton therapy and request their free book and video. It is worth investigating.

and if you want an inside look at what can go wrong with surgery and advanced PC read my Pad Diaries.

I wish you well and welcome to our fellowship.

BRONX52
Posts: 156
Joined: Apr 2010

MY OWN JOURNEY INVOLED SURGERY AND RADIATION. YOU DIDN'T MENTION IF YOU HAD ANY SIDE EFFECTS FROM YOUR SURGERY. MY DOCTOR(NOT A RADIATION ONCOLOGIST),RECOMMENDED RADIATION AFTER SURGERY DUE TO POSITIVE MARGIN AND EXTRAPROSTATIC EXTENSION. HE ALSO SAID YOU COULD WAIT UNTIL YOUR PSA STARTS TO RISE AND THEN DO THE RADIATION(SALVAGE) EITHER WAY, HE RECOMMENDED RADIATION TO KILL THE RESIDUL CANCER. THE SIDE EFFECTS I SPOKE OF ARE IMPORTANT BECAUSE ACCORDING TO MY DOCTOR, IF YOUR SIDE EFFECTS FROM THE SURGERY ARE SIGNIFICANT IE; INCONTENANCE, THE RADIATION COULD MAKE IT WORSE OR AT THE VERY LEAST "FREEZE" IT THE CURRENT LEVEL. IN OTHER WORDS, IF YOU ARE INCONTINENT BEFORE RADIATION, YOU WILL BE INCONTINENT AFTERWARDS. IT'S A TOUGH CALL TO MAKE AND I KNOW ITS NOT AN EASY CHOICE. I TOO DIDN'T WANT TO HAVE HORMONE TREATMENT, AND CHOSE NOT TO HAVE IT IN CONJUNCTION WITH THE RADIATION. FOR ME IT HAS WORKED OUT SO FAR WITH AN UNDETECTABLE PSA IN SIX MONTHS POST SURGERY AND RADIATION. GOOD LUCK IN THE PATH YOU CHOOSE !!!

Trew
Posts: 891
Joined: Jan 2010

Bronx, well said. I had stress incontinence before radiation, it has been much worse since radiation. I like your pro-active manage style, too. I wish I had been more assertive in my care and told the PA who gave me the shot (I never saw my uro- Dr Mashni- after surgery again- imagine that!) to take the shot himself and just sat and waited to see IF my PSA had any movement. I feel the uro office I started with was much to quick on the draw with the hormone shot and I was given absolutely NO time to discuss the effects of the hormone shot with the doctor with options, if there were any. It is one of my biggest complaints with that doctor and the way he did his business. I now know I could have waited a few months to let my body settle down after the shock of surgery and then, maybe, started the hormone shots.

I just wanted to say, Bronx, I like your style in dealing with your PCa.

BRONX52
Posts: 156
Joined: Apr 2010

trew---these prostate decisions we have to make along the way eat away at your nerves. before i made any decisions i did as much research as i could and spoke to several doctors not in any way involved with my treatment. some gave the standard answers such as listen to the specialist but others gave their honest opinion which sometimes differed drastically with the specialists. still, its up to the individual to choose his treatment. i'm fortunate to have a very good urologist who often calls just to see how i'm doing and is willing to listen to any concerns about a particular treatment ie; hormone. in the end he respected my decision not to have hormone therapy and we just went with the radiation. maybe hormone therapy is something that i will have consider in the future but i will deal with that when the time comes (i hope never). i am sure you will have to make some decisions when you get to michigan and i know you will do whats best for you. you've been through so much that things can only get better from here on---good luck and i will keep you in my thoughts and prayers for a successful treatment. next time i read the pad diaries i expect to see good news and a happy TREW reporting SUCCESS!!!!

Trew
Posts: 891
Joined: Jan 2010

Thank-you, Bronx.

The Pad Diaries where just an attempt to let others know that sometimes post-surgery can be different than expected. And the 2nd and 3rd guessing I have put myself through since surgery could fill a book and it still goes on.

Sort of like getting hit by a little Mack Truck. Others on here have been really slammed hard by PC- they got hit by the BIG Mack truck. I am well aware of the difference from case to case as presented here.

ob66
Posts: 214
Joined: Apr 2010

I have followed somewhat the same path. DaVinci Sx June 2009. Post-op pathology showed Gleason 8 (pre-op was 3+4=7). Neoplasm confined within prostatic capsule and surgical margins. CA involves right seminal vesicle. No lymph node involvement. Post op PSA readings were 0.05 3,6, and 9 months post op, the latter being an ultrasensitive PSA. Next PSA was 0.07 again ultrasensitive. Suffering incontinence an AUS was recommended with Casodex and Lupron to put me in a holding pattern until we could heal from that surgery and proceed with radiation. Just finished 37 radiation treatments Aug.4 and will have the AUS activated next Monday (hallelujah). Further Lupron has been recommended which I will probably proceed with (not too excited here).

Questions: After reading Pat Walsh's book extensively, I wonder if my ultrasenitive PSAs could have been nothing other than a variable as described by him? He is not a fan of ultrasensitive PSAs. Seems to think they project too much worry, and if differences are small they can be statistically insignificant. Am I reading this right. Secondly, since they were still under .1 or .2 (whichever standard you choose) do I have PSA worries? I can't imagine I will have another one for some time, for if on the hormone, it should not be valid in it's results.

I wanted the radiation in conjunction with the daVinci from the start, but I am assuming it was done because of the small rise in PSA. Regardless, I am glad I have followed the path you did, and like all of us, have my fingers crossed. Any comments would be well received. Thanks

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

For what it's worth, when I was in my "decision-making stage", I visited with a doctor at Johns Hopkins who eventually did my radical prostatectomy. He presented me with all the surgical and non-surgical options. However, when he mentioned hormones as an option, he discounted that immediately and told me as far as he was concerned, it wasn't an option. If I decided on hormone therapy, I'd have to find another doctor. I'd not read many good things about hormone therapy, so I scratched it off my list.

I think making this decision is the toughest part of the whole thing. Best of luck.

Trew
Posts: 891
Joined: Jan 2010

There is hormone treatment as a primary treatment, and then there is hormone treatment as a supplimentary treatment that goes with a high Gleason, surgery and positve margins. Still, knowing what I know now, I would not have agreed to hormone shots so soon after surgery. I think it may have contributed to the perlonged struggle with incontinence, and it would have been nice to see if "the 50%" that was spared could get the job done. Alas, its now been 16 months and I have no idea it "the 50%" works or not.

Believe me, there is no fire suppressant like a hormone shot.

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

We are going to the urologist tomorrow to find out the results of my husband's Prostascint. The bone scan showed no cancer in the bones. We are not talking about this because we are both so worried and I for one am wondering what could happen. My husband is just waiting to see what the doctor says. I want to be prepared for the visit. Please tell me what to ask. IF radiation is recommended, is it necessary to do it immediately? IF hormone therapy is recommended, does he have a choice? Is it possible there will be an option of waiting and watching? I do not have the records of all the PSA counts over the past 4 years. It just seems that we were not worried until the doctor sent him for all these scans. I do know his PSA 6 months ago was .28 and the one 6 months before that was about the same. I remember one of the times before that, the nurse called and told us the count and said it was almost zero. It was .0????. So I am unable to use the calculator to find the DT since I don't have the figures. But I can see that from .28 to .64 in 6 months is not good. I am rambling. Please give me a list of questions to ask tomorrow. I really appreciate all the shared experiences and the comments and suggestions from this list. Very helpful.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Nana,

Well it good that there is no evidence of cancer in the bones. That's positive and an indication that the PCa is not in an advanced stage.

These are questions I would ask:

What is the PSA velocity and doubling time? What does this mean to me?

Did the prostascint pinpoint exactly where the cancer is now? If it did, what are the best ways to treat it? Radiation, Hormone Therapy, a combination, or something else?

Since the PSA is greater is now 0.64 what is the urgency of treatment?

Will you schedule us an appointment with a radiologist and oncolotist that specializes in PCa salvage options?

What type of radiation is appropriate for this, IMRT, XBRT, or some other (maybe newer) methodology?

Do you know if my insurance covers the type of treatment you're suggesting?

If HT is recommended, what drugs are being used, how long will I have to take them, and what are the side effects of these drugs?

Is chemotherapy an option at this point?

What are the testosterone levels and dihydrotestosterone levels? Can those be treated by another method (Orchiectomy for example) and would that help? (testosterone tends to cause the cancer cells to grow)

What are the potential adverse side effects of each of these treatments on urinary function, potency, pain, etc? Make them tell you the percentages of men who suffer from these side effects based on a real study...not something like "some men may have a problem..."

When should we start treatment?

How long will the treatment last?

Are there supplements or dietary changes that we should be following that can help retard the cancer growth? If he says no or doesn't know, I would ask if he could recommend a homeopathic doctor you could visit.

Given my statistics, what do the post RP nomograms indicate that this treatment will be effective? Make him show you the nomogram. Johns Hopkins has some as well as Sloan Ketting Cancer Center.

Hope this helps, Nana, and that others who have had to do this before pipe up before your appointment.

Keep us posted and good luck.

W

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

Kongo, thank you for the list of questions. And my husband thanks you. :) We have it printed and will take it to the doctor's office tomorrow. I will let you know as soon as we get home. It is a 50 mile trip up there. I have been reading about the different types of radiation treatment. The IMRT is only available at one of the cancer treatment centers here in Fort Smith. It will be interesting to see what the recommendation is. If any. Thanks again.

Trew
Posts: 891
Joined: Jan 2010

Is your uro at LLU and is it Dr. Rossi? I had Dr. Rossi and he seems to want to play it safe and conservative- that was my opinion. the conservative view is that hormone treatment shold last 2 years and Dr Rossi recommended that as did my first uro in Lansing. I have since changed uros and my new one recognized my dislike and negative mood (depression) and recommended to just try it for one year instead of two. I jumped on that and that is my plan now.

Thank-you and Kongo for some very interesting sites for measuring the rise of PSA levels.

And when it comes to hormone treatment, yes, it will stop the male sexual response, and it will produce other side effects. Discuss those carefully with your uro. And remember, too, that some who have been on the shots have done better on them than others. You might even consider the shortest dose/duration of the shot possible to see how you do on it, though I have no idea if that is a good idea or not. You can always ask. Personally, I did not like the Eligard I was on and I think I will wait longer than .4 to go back on it if my PSA starts back up. That is me. I think, for me, I would rather live well than long and I can not live well on hormone shots. I did find it somewhat of an emotional Psychedelic that projected me into emotional levels I had never expereinced before. If I could only get the colors with the hot flashes and tears it might be worth considering again.

Live well and savor the moment, and anticipate eternity.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Nana, where in Arkansas are you, anyway? BTW, as you probably know from your research, IMRT may take 40 or more sessions so you will be doing some commuting if that is that path you end up on.

In doing geneology research, a lot of my family ended up in Arkansas after the Civil War (some around Ft. Smith) and ended up moving on into Oklahoma after the Land Rush. A lot of them were around Paris, AK.

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

We are in the Ouachita Mountains. Pronounce "Wash i taw" It is very beautiful here. Yes, it will be a commute. We have had experience with that when I had radiation with breast cancer. I think I had 30 treatments (may have been 36). We are just hoping we will be able to carry out our travel plans this fall. One trip in August and one in October. But you know what they say about the "best laid plans of mice and men" - so we will take whatever comes. That is the reason for my questions about when? and how long? I am an amateur genealogist. I have been researching my family (several branches) for about 15 years.

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

We feel like we got good news. The uro said the Prostascint showed 2 tiny specks of cancer cells at the site of the surgery. At first he mentioned a "little" radiation. I asked what that meant. He said 30 or 40% of the full dose of radiation for about 2 weeks. Then we told him we had vacation plans and he said 'oh well, you can go ahead and take those trips with this.' Then we talked some more and he showed us the report from the radiologist. Under the heading IMPRESSION: the radiologist had written "question about cancer cells" - not an exact quote but I could see that the radiologist and the uro agreed that this was a slight bit of cancer cells. Then the uro showed us all of husband's PSA readings since before the surgery. And he said the high reading could be from some chemical in the test. He offered us the option of waiting 3 or 4 months and do another PSA to see how it changes. So that is what Jerry chose to do. I am happy with that decision. The Doc is not quick to do radiation and he offers the hormone shots after everything else fails. He assured us the 'little' radiation would not affect his continence or his sexual activity. My husband has had good continence - some stress related leaking at times. He uses a pad when we go shopping just in case, but today it was not wet at all. And with Viagra he performs just fine sexually. I want to say thank you to all of you for your comments and encouragement. We both appreciate this discussion board. We know this prostate cancer and all that comes along with it is not fun. Some of you have had to endure some serious hardships and you have kept your sense of humor. We know that is important. BTW if you have a cath bag and any babies come to see you, keep that tube hidden!!! Right after surgery, one of our "grand" daughters came to visit and saw the tube under his robe, and grabbed it and started running away. Papaw quickly got up out of his chair and followed her!!!!

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