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Failed prostatectomy...Post-op PSA is 1.19

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Posted 2/3/2011 8:16 PM (GMT 0)
My husband is 51 and had an open radical prostatectomy (nerve sparing and nerve grafting) on November 9th, 2010, after a biopsy showed that he had 10/10 cores positive, peri-neural invasion, Gleason score 3+4 and PSA was 32. Bone scan and CT scan...negative

Pathology: 80% of prostate was involved with cancer. Extensive extracapsular extension, unifocal positive margin and seminal vesicle invasion. Lymph nodes (5 taken) were negative. Staging: T3b. Seven weeks fter surgery, PSA still at 1.19. confused

Post op bone scan...negative, CT scan showed a questionable enlargement of one of the lymph nodes left behind. Also, due to a history of colitis, radiation is not recommended.

We're in Canada (Toronto) and it seems that triple blockade is not a standard, or well respected protocol of treatment here. However, I've read that intermittent ADT3 is better than ADT1 or ADT2.

Irv never had symptoms and, for the most part, he did well with the surgery...with expected consequences.

Any opinions or past experiences with similar extent of cancer would be appreciated.

Regards, Rhonda
Posted 2/3/2011 8:39 PM (GMT 0)
Hi Rhonda,
Welcome to our support group. You titled this thread as "failed prostatectomy" and I just wanted to let you know a few things I came across. But first I want to point out that your husbands clinical data was very likely to show stage 3 or stage 4 after RP. In such cases I have still seen reasonable disease control with RP in combination with radiation and/or hormonal therapies. Thus while disappointed that the PSA didn't go to undetectable, there still is plenty of hope that the RP will help in future disease control.

You know this much today ~ the cancer cells removed are not going to be the ones to drive any further disease progression. We recently had a post that showed some interesting discussion on RP over a median 18.6 year period. If you have not already read it here is that link...

www.healingwell.com/community/default.aspx?f=35&m=2015933

Rhonda your husband is likely stage 4 and he has some work cut out for him. But the news that you have received still does not mean your husband won't do well with further treatment. On the ADT versus ADT 3 part, there may or may not be a survival benefit when adding a 5ARI drug like dutasteride or finasteride. This is why many doctors won't prescribe it. But if you feel that adding the 5ARI will give addition peace of mind then ask for it when discussing ADT therapies. I know a gentleman who is a survivor and well known PCa advocate. His name is Chuck Maack. He really knows the 5ARI stuff well and might be able to help. If you send me an Email I will copy you on an Email to him and get you guys in contact.

Stay positive. There is plenty of good things that can help ahead...

Tony
Posted 2/3/2011 8:39 PM (GMT 0)
Rhonda:
That 10 of 10 sticks jarred my coffee. The post op seems to have been predicted by the biopsy information. I assume the post op pathology confirmed the G3+4? I see why, with his colitis history, he went with surgery. No regrets. That is a large volume of cancer and the pathology is not really a surprise. That said, he has a target for radiation. I know a man who had G8 surgery and microscopic node metastasis and numerous positive margins. His post op psa was 1.4 (or 1.14, cannot remember for certain). Enough to make his pants brown, as he said. He underwent 3 years of ADT with radiation and now, 8 years later has super undetectible psa <0.003. Do not discount the magic of radiation. Adjuvant is likely less radiation than when curative with prostate in place
HOWEVER
Colitis is nothing to fool with. Another consult or two might be in order. I say hold off on the ADT for a few weeks until his head is back in place.
I was margin neg, post op pT2c, node positive, and 5 weeks post op 2.7. 9 weeks post op 2.7. With LHRH help I am 5 years post op and coming off my second intermittent period and psa down 95% in 11 weeks. Headed for undetectible.
Posted 2/3/2011 10:04 PM (GMT 0)
Your only 7 weeks post surgery and his psa is down to 1.7 from 32. I think that is a hugh drop. The standard time to wait is 3 months. I would not do anything until you have a PSA test then. The large volume of cancer is troubling.
Posted 2/3/2011 10:13 PM (GMT 0)
srhonda61- I didn't get surgery because I was beyond a reasonable candidate and got refused by Dr. Menon, which was actually very righteous (Mel are you watching these words?). Anyway ADT3 for awhile might be worthwhile and then switch to something else or go back on/off intermittently. I have worse stats than yours and 12/12 all PCa with high volumes, the good news is coming up on year 9 like next month or so. Look at all your options and keep looking is my advice.
Posted 2/3/2011 10:58 PM (GMT 0)
Rhonda and Irv:
Sorry that the post op numbers are not what you wanted - they are down, and may flucuate further.
Having your email on file with your profile ( accessible only to members of HW) would help in communication.

May I ask what hospital you are dealing with in Toronto?
My family has had good results with Princess Margaret and their staff in the past.

Wishing you two all the best in Irv's recovery.
hugs,
BRONSON
Posted 2/3/2011 11:02 PM (GMT 0)
Irv just got back an updated PSA...which we didn't like at all. Since the last PSA done on January 4th, with a result of 1.19, it has gone up to 1.71 as of February 1, less than one month. So, after prostatectomy, the PSA should be undetectable, and, instead, it's gone up and heading towards 2.

I don't like it at all that there's cancer growing inside of Irv. :(

Any more words of wisdom out there?

Rhonda
Posted 2/3/2011 11:25 PM (GMT 0)
Rhonda,

It certainly isn't good news by anymeans. Just means you are going to have to use a secondary treatment, probably either adjuvant radiation alone, or with hormone treatment added to it. There is still plenty of reason to be hopeful for your husband at this juncture. He needs to heal from his surgery too.

David in SC
Posted 2/3/2011 11:27 PM (GMT 0)
P.S>

With 10 of 10 cores positive and a PSA of 32, really surprised they attempted a nerve-sparing operation, the norm would be to cut wide margins.
Posted 2/3/2011 11:36 PM (GMT 0)
Rhonda,

Hang in there. Sorry for the upsetting news. Trust me, we all have dealt with our own bad news one time or another here.

The game for all of us regardless of pathology is to keep the PSA under control. It may seem hopeless at the moment. But, you will have a better outlook once your husband and you have a game plan. HT, diet, and possibly radiation will probably be a part of your game plan.

You will soon find out that this site is filled with wisdom. It is the best site out there for information and support. Whenever you have a question or concern, do not hesitate to post a new topic or add to someone elses.

Thanks,
Jerry
Posted 2/3/2011 11:53 PM (GMT 0)
Purgatory, we know about the adjuvant therapy....and it won't be radiation for Irv because of his history of ulcerative colitis. The risk is too high for the very low chance that the radiation will help.

So, we're looking at hormone therapy, but apparently, there are some clinical trials as well. Our issue is that we are very much interested in triple blockade as we've seen how it works for people, and, yet, it isn't a practiced protocol here in Toronto. So, we feel scared and frustrated.

I'm curious to hear from Zufus about the alternative medication to ADT3 that he has been taking. Is DES chemo??? Like Desataxel or something like that? What are the side effects?

I'll look forward to more information.

Thanks
Rhonda
Posted 2/3/2011 11:55 PM (GMT 0)
I don't understand the nerve sparing stuff either with stats like yours...

While my stats were/are not quite as bad as yours, my first and second post-op PSA was 0.9 at eight weeks and 0.9 at 10 weeks...I am currently undergoing both RT and HT...

Radiation treatment has come a long way, the latest machines can deliver their dose with pin-point accuracy and control while greatly reducing the total body dose by 2/3rds. Here is a link that describes one of the more advanced machines..It might be possible to have RT even with the colitis or maybe not, but it's sure worth asking about..

www.mimacancercenter.com/technology.aspx
Posted 2/4/2011 12:01 AM (GMT 0)
David,

How would you consider radiation as adjuvant ? He clearly will need to consider salvage radiation. Perhaps with positive margins, the PC is still in the prostate bed.

Actually, I would think his case might call for HT and radiation. With 10 of 10 cores, I would consider throwing everything at it.

I would recommend reading all that you can from the sites listed at the top of the forum. You will need to be decisive and firm with your doctors. You will need to decide what direction you feel is best.

Good luck on your journey. Please stay heft with us. I think you will find a lot of help here. We have guys who have had a worse prognosis than yours and are still going strong.
Posted 2/4/2011 12:58 AM (GMT 0)
Folks:

Ulcerative colitis is really bad stuff. It just may not be feasible to do SRT.

Mel

Posted 2/4/2011 1:28 AM (GMT 0)
Thank you, all, for your very helpful input. Tatt2man, we are, in fact, dealing with Princess Margaret Hospital. Dr. Fleshner did the surgery and the oncologic team discussed the possibility of Irv getting radiation and it was pretty clear that the feeling was that it was, in fact, NOT a good idea.

I just don't understand how his 3+4 Gleason could seem so aggressive. I just hope that it was checked again after surgery...Being PMH, I can't imagine that it wouldn't be.

I'll stick around to give updates and welcome all of your input.

Rhonda
Posted 2/4/2011 1:38 AM (GMT 0)
"I'll stick around to give updates and welcome all of your input."

That's a good plan, Rhonda. You are not the first to come here with these results and there are many that are doing well that will have at least anecdotal information. My post-op information was not very good either, though I have fared well. If you are dead set against moving forward with radiation, perhaps a look into cryo or HIFU could provide some help. I have experience with ADT and radiation after surgery so I can't speak for the others. I do have a member in my live support group that had salvage Cryo through Duke Bahn in California and he believes it helped at least for a while.

Tony
Posted 2/4/2011 2:47 AM (GMT 0)
I was just reading some studies using High Dose brachytheraqpy as adjuvant and salvage with and following high risk and or failed surgery. Dr. A Martinez in Michigan was a contributor and has been a pioneer in the field of HDR.

As HDR provides a superior conformal method of dose delivery it can be better at avoiding problem areas than external beam or seeds. In your research it woud be wise to speak with a HDR specialist that has experience using HDR after surgery has failed.

In my case I used HDR as a primary treatment combuned with IMRT and ADT3. My statistics were similar to your husband's and my urologist would not operate as he expected positive margins. My med oncologist concurred and they, independent of one another, pointed me to HDR. They, and my rad-onc, also said that I will still be a candidate for further HDR if needed as a salvage procedure.
Posted 2/4/2011 5:45 AM (GMT 0)
We were told that radiation might cause Irv to be in the hospital for 5 weeks and radiation wouldn't, then, be able to be completed....or, even worse, he might end up with a "bag" for the rest of his life. I don't think that it would be wise to take a chance like that.
Posted 2/4/2011 6:08 AM (GMT 0)
The colostomy bag becomes a minor issue if the radiation treatment saves his life...

So the question becomes what are the chances that RT would be successful....Is it worth the risk of major complications to pursue an unknown chance for a cure or at least a greatly extended survival expectation..
Posted 2/4/2011 6:12 AM (GMT 0)
I have a Urostomy as the direct result of radiation damage. Having a colostomy is not a minor issue in my opinion.
Posted 2/4/2011 7:03 AM (GMT 0)
Problem is, there seems to be a very small chance that the cancer is confined to the prostate bed, so large risk for a very little chance of success.
Posted 2/4/2011 7:47 AM (GMT 0)
Sorry about your situation.

I don't think it's one that has occured a lot here.
The surgery has taken away a lot of trouble none the less!
Yes HT can clearly get things under control, and there are plenty here who have had good experiences that way.

There is clearly a major QOL issue regarding RT causing damage to the intestines for a colitis case. I think it would be understandable not to go down that road on the basis that there could be a chance the RT wouldn't do what you want, so you'd end up with a bag and no reduction in PSA.

Otherwise I hope he is recovering well from the surgery.

Alf
Posted 2/4/2011 12:29 PM (GMT 0)
All good tips from the brothern to you, you can always get a second opinion on RT and not through a referral is best, they are a brotherhood sometimes in that respect. You have a ton to learn about on drug therapies if you wish to be aware of all your options, choices and future side effects. The PCa specialist oncologist docs are your best choices for total longevity in my opinion....the average onco-doc tethered to a hospital or group has less options to use probably because of legal or profit motives. You will be surprized what is not told to patients. Hey I am not the gorilla in the room.

Click on my namesake zufus and find my email address, we can talk if you like. Dr. Menon would have refused surgery most likely in your case, as it almost mirrors my case.
Posted 2/4/2011 2:51 PM (GMT 0)
Rhonda and Irv-

- wishing you both the best - for answers, more questions and possible solutions ...

- what got me with your first message that with 10 out of 10 positive in the biopsy they went after nerve-sparing and graft - rather than ( the assumed) wide berth as noted by David (purgatory)...

- that is in hindsight, and what is needed now is a clear head, a brave heart and a good discussion with your doctors on short and long term effect - quality of life and where you want to be ( let's say for example) a year from now...

- do chat via email with some of those who have offered ( the envelope under their name is blue if activated on their profile) - they have solid experience in what you are possibly facing...

-sincere hugs
BRONSON
Posted 2/4/2011 9:06 PM (GMT 0)
Rhonda:
As to the ADT 3 protocol, here in the US many men are not provided with that option as their doctor(s) preferred historic patterns they learned in genito-urinary school. There is a work around if all else fails: ALLDAYCHEMIST in India for your bicalutimide and dutasteride, if appropriate. Cost is low, drugs have proven to be the real thing. I use them.
Drugs from China are a whole other issue which I avoid.
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