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New Member LilyBug -- Questions about adjuvant RT for her G9 Husband

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Posted 2/12/2014 2:32 PM (GMT 0)
My husband had robotic radical retropubic prostatectomy on 12/4/2013. He is still incontient using 5-6 pads per day. His age is 67.Surgical pathology report was T3b,NO,MO. Gleason 9, with positive margins, stating he has high volume disease. Last seen surgeon on Jan.16, stating there is no PSA showing, but that he needs to come back in April for another PSA test. The doctor states he can not have radiation until he is dry. He has no control, with no improvement yet. If they know the cancer has spread, why do they wait so long for treatment??
Is this a normal amount of time to still be incontient?

thanks to all

Gave your post a title

Post Edited By Moderator (PeterDisAbelard.) : 2/12/2014 8:03:28 AM (GMT-7)

Posted 2/12/2014 2:36 PM (GMT 0)
Hello Lilybug,

Welcome to the forum. So sorry you need to be here but glad you found us. I hope we can help.

To answer a few of your questions:

It is hard to say what is 'normal' after prostate surgery but to be incontinent after two months is not unusual. The usual expectation is that a few guys will be continent right away, but not many, and a slim majority (something like 60%) will be dry by three months. By one year 85 percent will be dry and the remaining 15 percent -- guys like me, as it happens -- may need further surgery to get continent. But that is borrowing trouble for your husband at this point.

The doctors do like to wait after surgery before doing adjuvant radiation. This is to allow a man to regain as much urinary continence as possible. The radiation tends to interfere with the healing process and by waiting a bit they can let those 60 percent who regain continence in a few months get dry and then do the radiation. The rule of thumb used by my doctor is that they like to finish the radiation treatments within six months of surgery. Since the treatments take about seven weeks that would give your husband a start date of late April for his radiation if I did my math right.

You didn't mention hormone therapy. Often they give men hormones while they are waiting for the radiation. This blocks his testosterone production and keeps the cancer from progressing while he waits. The hormones also make any remaining cancer more susceptible to radiation, improving the cure rates and reducing the likelihood that he will need more treatments farther down the line.

Have you talked to a medical oncologist? Men with high risk cancer tend to have three specialists -- a surgeon, a radiation oncologist and a medical oncologist. If your surgeon is still doing everything for you it may be time to add to the team of doctors. If you let us know what big city you live in or near we may be able to recommend a few doctors that our members have seen.

Again, welcome to the forum. Let us know how we can help.
Posted 2/12/2014 2:58 PM (GMT 0)
The fact that your husband has positive margins and gl9 disease, which is an "aggressive" form of pca is the reason your docs are talking radiation. When they refer to the cancer as high volume , they do not mean that that his body is riddled with cancer , it means his prostate had a lot and with positive margins , they do not feel they got it all. The fact that he has undetectable psa, I assume this from your post, means they got the bulk of it , but what they feel thy didn't get will grow. They feel they may have to mop up the rest with radiation. Your husband is still in a curable state, possibly. The theory on waiting for 3 mos is to give your husband time to gain contingency, as they also "believe" radiation will, as a side effect stop the continence improvement where it is, at time of radiation. No, the time your husband has had incontinence is not excessive, but I will defer to thos who have suffered the problem. That is a lot of pads, tho, but continence does improve with time. Your doctors want another psa test in 3 mos to see if , in fact, the cancer is growing before they do radiation. It is not a given that , they did not to get it all. While a Gleason 9 is more aggressive than a 6 0r 7, it is still a slow growing cancer compared to most cancers. With proper treatment a gl9 can life for years, even decades. There is much hope in your husbands situation. Hope with nutricious calories, not just empty ones.
Posted 2/12/2014 3:17 PM (GMT 0)
Im not sure we know that they want to do adjuvant or recurrence driven SRT. He,Doc, mentioned psa in 3 mos which slightly leads me to believe the latter. In any event, the psa will tell a story. 3 mos post op, implied undetectable, then 3 mos more for another would be a unusual 6 mos adjuvant plan. Ich mach nix, he seems to be on a good path for treatment and I believe the info provided should ease liliy bugs mind considerably.
Posted 2/12/2014 3:45 PM (GMT 0)
Thanks all,
Just to mention and answer above question, he has not been given any Hormone treatment to date.
I also must mention that the surgeon is a very rude and nasty. This is hard enough to deal with, but then to have such a nasty doc, makes it worse.

Thanking you again
Posted 2/12/2014 4:09 PM (GMT 0)
Welcome to HW sorry you need to be here.

I wouldn't put up with rude and nasty. Find another doctor to do the follow up treatment. With G9 HT and radiation are the most aggressive things you can do.

You mentioned that there is "no PSA" that would indicate that there is little to no PC active at the moment. Until the PSA starts to rise, further treatments might not be needed. Also understand that radiation causes it's own kinds of damage. You really want things to heal 3-6 months after surgery before doing that.

At this point I'd say you need to find a good RO and medical oncologist to advise you further.

Hang in there and keep us updated on your progress.
Andrew
Posted 2/12/2014 5:50 PM (GMT 0)
I have to admit that it makes things easier for me when you say you don't like his doctor. Your husband's pathology report sounds a lot like mine, at least in broad terms, and when I was as far out of surgery as he is now I had already been on Hormones for a month and had talked to both a medical oncologist and a radiation oncologist. I wouldn't want to cast doubt on your husband's doctor but he seems a bit less aggressive than mine were. And even if you loved his surgeon your husband -- as a high-volume Gleason 9 with positive surgical margins -- really needs to talk to a medical oncologist (a specialist in treating cancer with drugs) and a radiation oncologist (a specialist in treating cancer with radiation.) Men with that sort of post-op results should never have a surgeon as their only doctor.
Posted 2/12/2014 7:25 PM (GMT 0)
lilybug

It's normal practice to avoid RT until continence has returned, because RT can exacerbate incontinence. Did he have Seminal vesicle invasion? If so, RT confers no benefit unless it's preceded by ADT. I'm facing the same issue. Best wishes!
Bob
___________________________________________________________________
DOB January 1944
1981: prostatitis
2000-2013 BPH treated with finasteride & tamsulosin; low T treated with androgel
PSA History:
Pre 2009 0.4-.6
11/2011 2.2
8/2012 2.7
2/2103 5.5
4/2013 6.1
5/2013 6.6
11/2013 0.1
1/2014 0.2

6/2013 Bx:PCa Gleason 4+4=8 (Bostwick), 4+5= 9(Johns Hopkins), 2/6 cores, 10%, 40%, DRE neg. (Stage PT1c)
7/2013 bone scan and pelvic MRI negative
9/7/13 open RRP, Johns Hopkins, Ted Schaeffer MD PhD.
9/9/13 Pathology: 33G, both nerves spared, SVI, EPE and 4mm pos. margin at base (Gl7), Stage PT3bN0M0)
9/20/13 Foley and staples removed
Continence: one pad per day for 13 weeks, now none. ED pre and post op.
Watchful waiting until next PSA May 1, 2014
Posted 2/12/2014 11:31 PM (GMT 0)
My surgeon has an 18-week minimum wait before RT. Time allows internal healing (there were things cut and bruised that you can't see which heal very slowly) as RT slows down that, and also allows for incontinence improvements. It was 4 months at least before I got down to just 3 or 4 pads a day.

I had to wait longer because there was no time available on the machine, so I think it was 23, 25 weeks before I got started?

In any case I never made it to dry.

My RT (adjuvant) journey is linked in my signature
Posted 2/12/2014 11:36 PM (GMT 0)
So, Do you think I should contact a Cancer Spec.? or stay with this goon? By the way we are Medicare/Supplement if that makes a difference.
I know I am a woman, but, I truly love that there is a place to go where I can get answers, and meet others who understand what this is all about. Bless each and everyone of you for your kindness. I love this forum.
Posted 2/12/2014 11:51 PM (GMT 0)
Argh. Had just written a long post and the system ate it. I hate the internet.

I have a GP, Uro (who was also my surgeon), and Medical Oncologist.

See the GP every 6 months, Uro every 3, and MO when he sees reports or changes that he wants to follow up on. He sees all the reports from the others.

Radiation Oncologist pushed me back to the uro once RT was finished, and has since retired.

Some of my best doctors over the years have been the least personable. They need to work well and provide adequate information. If they don't smell bad in person, and can be understood on the phone, bonus!

I am a believer in having a Medical Oncologist who specializes in PCa, but it isn't always possible (none of the big names often mentioned here are on my insurance, but some well-known others are).
Posted 2/13/2014 12:58 AM (GMT 0)
Get a team that does not annoy you. They are out there. good ones. if you share a general area where you would go, members may have suggestions. that used to be against the rules. I think it is permissible now, tho.
Posted 2/13/2014 2:40 AM (GMT 0)
LilyBug,

It's not an either-or proposition. There are things he will need a urologist for, from time to time, and there are things where a cancer specialist (medical oncologist) would be a better choice. In general, for high-risk men the MO acts as quarterback and sets the strategy but that doesn't mean that the uro is off the team.
Posted 2/13/2014 4:11 AM (GMT 0)
I was a t3b with adj. Radiation....I was almost at the same point with incontinence as your husband at 2 months...ironically, it got extremely better my 2nd week of radiation....

I had to fire my first urologist/surgeon because he too had some personality issues...

Welcome to HW..
Posted 2/13/2014 6:56 PM (GMT 0)
Lilybug1,

So sorry to hear you and your hubby are facing PCa.  I've been learning a lot since my husband was diagnosed with it last September.  And I agree with you this forum is great.  I love it too!  He had his surgery in November and just this month stopped using pads.  After the first month I was very worried he might always have some incontinence.  But a good three months is what it took for him.  Now I'm starting to worry that the radiation will cause problems. 

His surgeon also suggested he wait approx. 6 months before radiation to allow everything to heal as much as possible.  We're meeting with the surgeon tomorrow for his first PSA test and 3 month post op visit.  I'm so nervous. 

He has been on HT since before the surgery.  But I believe that's because he has bone mets too. 

If I were you I would find another urologist.  I can put up with a certain amount of arrogance but if he's down right rude I'd have to let him go.  There are plenty of other urologists. My girlfriend that has breast cancer just fired her surgeon.  He performed her mastectomy and when she went back to visit with him about scheduling the final reconstruction he was very rude to her (he hadn't been very nice or informative before).  So she told him right then and there she'd be finding another surgeon. 

Good luck to the two of you.  Hopefully the incontinence will start recovering after a full 3 to 4 months.

Posted 2/13/2014 7:09 PM (GMT 0)
Lily, welcome to HW but sorry you have to be here. I echo the advice from others who suggest that you immediately consult a MEDICAL ONCOLOGIST to help you and hubby manage this aggressive disease. Please read the article by Dr. Scholz posted on the thread started by Mel (Compiler). This is very important.

Good luck.

Jim
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