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Were the results from your treatment better or worse than expected?

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Posted 8/9/2011 2:01 PM (GMT 0)
This is prompted by mr bill's post of a study of expectations regarding treatment. Anyone who is wiling to answer these questions may help us guys who are still in the decision making process. I would have liked to have done a poll but there are so many variables that it would have taken several polls to correctly reach conclusions.

1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
2. Were the after-effects of treatment better or worse than expected?
3. Is ED a major problem, a manageable problem or not a problem at all?
4. Is incontinence a major problem, a manageable problem or not a problem at all?
5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?
Posted 8/9/2011 3:49 PM (GMT 0)
"but there are so many variables that it would have taken several polls to correctly reach conclusions"

And even if you did many polls you'd still be scratching your head turn

I was 52 when my journey started and I too was a Gleason 6(3+3) with a PSA of 1.3 ....

Incontinence was a piece of cake - ED on the other hand wasn't. The pills gave me major headaches.... But that doesn't mean they would for you.

Two Thirds of the reason I chose surgery was the fact that the 40 something trips across town for radiation didn't sit well for me...

Posted 8/9/2011 4:41 PM (GMT 0)

Dreamerboy said...
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
2. Were the after-effects of treatment better or worse than expected?
3. Is ED a major problem, a manageable problem or not a problem at all?
4. Is incontinence a major problem, a manageable problem or not a problem at all?
5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

Terry the Water guys says:

1.)I chose to do RALP and so far very happy with my choice and yes I was given other choices by my URO with no one treatment favored over the other by him except he strongly told me not to do the Watchful waiting route.


2. The surgery, anticipated pain and recovery was a piece of cake and much better than expected

3.) ED is a major problem for me but my URO is dedicated to fixing the problem now rather than later and I am on a 30 day TRIMIX injection therapy of 3 times a week.. Then we will try injections and Viagra for a month after that.

4.) I have been totally dry since week 4 and used only 2 pads a day from week 2 to week 4

5.) no other side-effects to report

6.) I looked at RALP, radiation external and seeds and proton radiation. My first choice would have been proton but BCBS of AL would not cover the cost  and I could not spend 6 to 8 weeks away from home and my business for treatment. Radiation and seeds were not to favorable either as I wasn't too keen on the possible long term side effects. RALP was the only smart decision for me and yes under the same circumstances I would do it all over again.

 

I hope that this helps you Dreamerboy and if you have any questions or just want to talk more please shoot me an email from my link on this forum.

Terry

Posted 8/9/2011 5:07 PM (GMT 0)
Answers to your questions:

1. I chose IMRT as with concurrent HT single agent. Choice was wide open and I looked at all of them. Based on my particular statistics and the high probability that the cancer was out of the gland. My reasoning was if the cancer is still cofined to the gland radiation has as good a chance of stopping it as surgery. I was told that if I had the surgery there was a high probability that I would need the RT also.

2. The side effects of the radiation were not nearly as bad as advertised. Full recovery within days of last RT session. HT was tolerable but the second year I had weight gain, lethargy, and oodles of personal tropical vacations.

3. Had some recovery of erectile function about two years after treatment. I did not do any rehab as the oncologist said it was useless and I would not regain any function. (He may have been wrong on this one) It has caused no problem because I am single and not courting anyone at the moment. Courting is probably not in my future.

4. No problem at all and no bowel issues either. This from one week after last session.

5. No other side effects from RT. HT has given me the gift of metabolic syndrome and now I am fighting to keep from being placed on diabetic medicines and to keep my heart healthy.

6. This is always tricky. Hindsight I may have gone with the full monty. Surgery, RT, and HT. At the time of the decision I did a flow chart and consdered all of the outcomes and chose the path that would hopefully result in the least amount of residual side effects and restore my health. There were other considerations regarding self care during treatment and financial matters as I am uninsured but these were secondary to the primary objective.

Don

 

Posted 8/9/2011 7:29 PM (GMT 0)
1. Combo of BT and IGRT. I had all the choices out there.
2. After-effects were exactly what the Uro and the Rad had led me to expect. There were no surprises and no problems.
3. ED is not a problem. That said, I find that desire is somewhat less.
4. No incontinence.
5. Some frequency....but no more so that before I was dx'd. Managed by taking Flomax.
6. I would definitely do the same thing again.

Joe
Posted 8/9/2011 8:53 PM (GMT 0)

Dreamerboy said...
This is prompted by mr bill's post of a study of expectations regarding treatment. Anyone who is wiling to answer these questions may help us guys who are still in the decision making process. I would have liked to have done a poll but there are so many variables that it would have taken several polls to correctly reach conclusions.

1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
2. Were the after-effects of treatment better or worse than expected?
3. Is ED a major problem, a manageable problem or not a problem at all?
4. Is incontinence a major problem, a manageable problem or not a problem at all?
5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

1. I chose TFT (Targeted Focal Therapy)by Cryosurgery. A clinical research product that only targets the tumor leaving the rest of the prostate intact and working. Kills the cancer with targeted argon ice balls. Also requires a 3D saturation biopsy before the TFT. Happy? Hell I'm amazed how this all turned out. Especially remembering my dark depressed thoughts back in November 2007 when first diagnosed. My outcome back then wasn't in my wildest dreams, or thought to be any way possible. See what can happen when one doesn't rush off to radical treatments 6 weeks after dx but educates oneself on ALL options. Yes I had all surgical and radiological treatment options available.

2. Better was just sore for a couple of weeks. Week 1 I cut my daily walks from twice around a local reservoir to once, or near 3 miles to about 1.5 miles.

3. Had viagara prescribed to get the blood flowing again now back to normal. I still have half of my 3 year old ADC order of 40 tablets left. I do one occasionally for a new date or special one. My ejaculation is about 60% less volume than it was before.

4. No incontinence ever as I still have a partial working prostate.

5. No other side effects at all.

6. Of course I would as my 21st century TFT is like a lumpecotmy. The only after effect is less ejaculation. I stand here rather embarrassed to declare myself the most successfully treated PCa victim on this site the last 3+ years but it's true.
Posted 8/9/2011 9:33 PM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

     Brachytherapy. Totally happy. I had full choice of treatments.  All would be insurance reimbursed except HIFU.


2. Were the after-effects of treatment better or worse than expected?

     The same.  I was told to expect very few SE's and I was not disappointed.


3. Is ED a major problem, a manageable problem or not a problem at all?

    No problem. Never has been pre or post procedure (almost 3 years now)


4. Is incontinence a major problem, a manageable problem or not a problem at all?

    No incontinence.


5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?

     Early frequency and urgency that was easily managed and posed no problems.  Approx. 50% loss of ejaculate with no change in feeling.


6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose

    Of course I would choose the same treatment.  So far no BCR and virtually no SE's, why not?

Tudpock (Jim)

P.S.  Ziggy, glad to see you back again!

 

Posted 8/9/2011 9:37 PM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
I chose radical prostatectomy via the robot. I am satisfied with the results. Back in 2006 when I started making decisions the data on 44yo men was scant. So was data on advanced forms of PCa with other alternatives. There may be other options available but if I had to do it over again I would not change what I did.

2. Were the after-effects of treatment better or worse than expected?
Better than expected. But I had a good surgeon and I knew his reputation. He said 80% of his patients were continent and functional by the end of the first year. I was both by month three when I started hormonal therapy that took me out of the sex game for three years.

3. Is ED a major problem, a manageable problem or not a problem at all?
I'm good. As I said above a great doctor matters here. Also I was out of the sex game for three years but it was due to testosterone ablation.

4. Is incontinence a major problem, a manageable problem or not a problem at all?
I'm good.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
Not for me. My secondary therapies that isn't a problem now but it can be later...

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?
I would not choose another option than the one I chose...I know a lot of men who do not feel the same as I do. Understandably so. Not all men had the results I had. But everything works and the disease is dormant.

Tony
Posted 8/9/2011 9:39 PM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
open surgery, and I am happy with the results, except that I now have BCR (Bio-Chemical Recurrence). I was Gleason 9 at biopsy so at the time surgery was "the only choice" ~ this from a surgeon! In hindsight, seeds/IMRT might have been a better choice.

2. Were the after-effects of treatment better or worse than expected?
Better. The catheter was no fun, but pain wasn't an issue, and I was soon back to my regular routine.

3. Is ED a major problem, a manageable problem or not a problem at all?
Manageable problem ~ I now use a pump. I was non-nerve-spared so expected total ED, but of course hoped for a miracle! Three years out, I have had some recovery in nerve function, in that I have occasional nocturnal erections. Visual stimulation does nothing at all, but a lot of manual stimulation in conjunction with rubber bands would produce a usable erection.

4. Is incontinence a major problem, a manageable problem or not a problem at all?
No problem at all.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
No other side effects.

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?
As I now have BCR, with the benefit of hindsight, I would probably choose seeds/IMRT. However that treatment has its own side effects and BCR may also be a consequence, so there is no way of knowing whether I would now be any better off. One thing I would do much sooner is get involved with the lifestyle/diet changes that are frequently discussed here. Not as an alternative to regular treatment but as an adjuct. With your numbers, you should be considering AS, and with regular montitoring of PSA, you would soon see if any lifestyle changes are having an effect.
Posted 8/9/2011 9:55 PM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

IMRT and happy with my choice. Options available included open surgery, Da Vinci surgery, seeds and watchful waiting.

2. Were the after-effects of treatment better or worse than expected?

about what was discussed prior to treatment. 8 months out I needed a dilation due to some scaring to the urethra. The dilation resolved the problem, at least for the past 3.5 years. I will say that the surgeons and rad onc's I talked with went out of their way to discuss worst possible side effect outcomes with me.

3. Is ED a major problem, a manageable problem or not a problem at all?

No problem at all.

4. Is incontinence a major problem, a manageable problem or not a problem at all?

No problem at all.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?

See my answer to #2., above

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

Yes, though I might give more thought to seeds because of the time issue. I'd have given some serious thought to Ziggy's TFT treatment, but I wasn't aware of it at the time (Dec 06 and Jan 07).
Posted 8/10/2011 12:39 AM (GMT 0)
Things are back to normal for me, as a result I am not following prostate cancer forum too closely these days. I found your post today and thought I should give you my opinion:

1. Robotic surgery. I researched surgery, Brachy and radiation and decided on robotic surgery. Totally satisfied with outcome.
2. Much better than my expectation regarding pain and recovery. Very uneventful recovery.
3. No ED, either before or after surgery.
4. No incontinence from the time catheter was taken out. Urination and control are actually better than before surgery.
5. No other complications.
6. Yes, I would choose the same treatment again. In the hand of a good & skill surgeon, I believe surgery is a very good option.

Last week I met 4 other patients operated by our surgeon (surgery from three years ago to a few weeks ago), and we all have undetectable PSA and satisfactory outcome (by our own definition).
Posted 8/10/2011 1:10 AM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

I had open surgery. Robotic was too new in my area at the time, didn’t want to have surgery out of state. My surgeon was highly experienced with open. Spent 4 ½ days in hospital, excellent care.

2. Were the after-effects of treatment better or worse than expected?

Much worse, as I developed multiple severe stricture issues, involving 6 corrective surgeries and 21 catheters.

3. Is ED a major problem, a manageable problem or not a problem at all?

Not a problem at all. I have never had any ED issue, not after any of my surgeries or after radiation treatments. In my open surgery, Only the right nerve bundle was left intact, but noted as being “damaged”.

4. Is incontinence a major problem, a manageable problem or not a problem at all?

Before I started getting into the stricture problems, my original incontinence issue was very minor, just a few days at best. Never did kegals after about a day. My problem ended up being not able to uriniate, quite the opposite issue to most.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a
major problem?

Salvage Radiation destroyed my bladder and bladder neck, ended up needing my bladder by-passed and having a stoma, so I have to wear an appliance 24/4 to urinate. All of the above left me with severe chronic paint and fatigue. Having said that, the SRT failed to stop the cancer

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

That’s a hard one to answer. If the cancer had been stopped either after surgery or after salvage radiation, then the answer would be yes. But since neither curative treatment worked, nor the treatments caused me so much pain and distress, not really sure what I would have done different. Based on my original numbers, both my uro and the radiation oncologist said that surgery would have been my best first choice.
________________________________________

David in SC
Posted 8/10/2011 2:13 AM (GMT 0)

Dreamerboy said...
This is prompted by mr bill's post of a study of expectations regarding treatment. Anyone who is wiling to answer these questions may help us guys who are still in the decision making process. I would have liked to have done a poll but there are so many variables that it would have taken several polls to correctly reach conclusions.

1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
2. Were the after-effects of treatment better or worse than expected?
3. Is ED a major problem, a manageable problem or not a problem at all?
4. Is incontinence a major problem, a manageable problem or not a problem at all?
5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

1. Robot Surgery, Happy, all treatments were available

2. Better

3. Not at all

4. Not at all

5. None (so far)

6.I did have a choice, and yes would choose same

Posted 8/10/2011 2:48 AM (GMT 0)

Dreamerboy said...
This is prompted by mr bill's post of a study of expectations regarding treatment. Anyone who is wiling to answer these questions may help us guys who are still in the decision making process. I would have liked to have done a poll but there are so many variables that it would have taken several polls to correctly reach conclusions.

1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
2. Were the after-effects of treatment better or worse than expected?
3. Is ED a major problem, a manageable problem or not a problem at all?
4. Is incontinence a major problem, a manageable problem or not a problem at all?
5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

1. open RP at a local hospital, very happy, researched going to a large hospital for the robot & radiation (IMRT) decided on my Dr after doing a bit of checking on her.

2. Better, due to staging I didn't have much hope of saving both nerve bundles, things turned out way better than hoped.

3. While not back to normal very manageable with minimal meds. Stats on dry and function are in sig'.

4. Non issue, 99.99% dry.

5. Peronies developed about 9 months after surgery, not certain if it's related.

6. I would do the same treatment with no hesitation.

Dave in Durango CO

_____________________________________________________________________________

Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 <0.04..... 08-03-10 <0.04...... 10-26-10 <0.04...... 1-25-11 <0.04...... 5-03-11 <0.04..... 8-04-11 <0.04
05-03-10 1 week without pads
06-28-10 Success!!
Today pills nice but not necessary.
Posted 8/10/2011 3:40 AM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

I had brachytherapy + IMRT + hormone therapy for two years. And yes, I have very good insurance so had a choice in treatment. My original urologist recommended surgery, but after some research I realized his knowledge base was not up to best standards, so I rejected his advice and did consultation with several important treatment centers.

2. Were the after-effects of treatment better or worse than expected?

about as I expected.

3. Is ED a major problem, a manageable problem or not a problem at all?

No problem, because with the hormone therapy there is no libido. I am going off HT now and have no idea what the future will bring in terms of sexual function.

4. Is incontinence a major problem, a manageable problem or not a problem at all?

Incontinence has not been a problem at all with this treatment. In the first two weeks or so after the the seed implant surgery, and for about the same period after IMRT, I had a lot of “urgency.” But the "urgency" was never so much that it resulted in incontinence.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?

Loss of libido was total. Also had some bone density loss, and slight anemia. With appropriate medication (Fosamax/Boniva and B12/Iron supplements) got past this.

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

Probably yes, though I might have given more consideration to high dosage brachytherapy instead of low dosage seed implants. But I was confident at the time, and still am, of the skill and knowledge of the doctor who did my seed implant surgery.

Main thing, do your own research for your specific conditions. And be very skeptical of the treatment recommended by your urologist. In fact, mistrust it to the core as his/her interests are not necessarily your interests.

Sancarlos
Posted 8/10/2011 4:05 AM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?
Due to my relatively young age, surgery was recommended as the best option. I had open RP, and in terms of being hopefully rid of any further PCa, I am happy with the treatment.

2. Were the after-effects of treatment better or worse than expected?
The pain was worse than I thought for the first couple days, it took about 6 weeks before I completely stopped hurting. There is huge emotional trauma from the whole saga. Your body is different than before, and the physical , physiological and psychological impact is significant

3. Is ED a major problem, a manageable problem or not a problem at all?
I never ever had a problem before, and now after "successful" surgery, nerve bundles spared, not much success. I get little no benefit from visual stim. The mast gets to about 1/2 staff, and doesn't stay that way too long.

4. Is incontinence a major problem, a manageable problem or not a problem at all?
used a pad for like 24 hours after the cath came out, never has any leakage in every day life.
when I went running for the first 6 weeks or so , leaked pretty good while running, then dried up and no issues since.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?
The impact of going from young to old overnight is pretty hard. I never had serious medical issues, them PCa, surgery, big scar on my belly, ED to the extent I have it. and the sense that your body has been changed and will never return to its former self.
6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?
I'm probably speaking from the luxury of not worrying about the Cancer part of the problem at the moment, but often I think I should have done nothing. Also think that if I get a recurrence, not to do any treatment because of the side effects. I think my outcome was good overall, especially compared to some of what the people on the forum have gone through, but I think I have used up most of my luck and physical/psychological reserves up to this point and can't contemplate more intervention
Posted 8/10/2011 7:45 AM (GMT 0)
This is prompted by mr bill's post of a study of expectations regarding treatment. Anyone who is wiling to answer these questions may help us guys who are still in the decision making process. I would have liked to have done a poll but there are so many variables that it would have taken several polls to correctly reach conclusions.

1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

Robotic surgery. Couldn't be happier with my choice and on paper I had choices. Given my age though I figured I really only had one choice.

2. Were the after-effects of treatment better or worse than expected?

So much better than expected. I was braced for the worst but had no issues with incontinence and all things considered very minor things I had to adapt to vis-a-vis sexual function.

3. Is ED a major problem, a manageable problem or not a problem at all?

Very manageable a month out of surgery. 8 months out of surgery I'm pretty much back to where I was prior to surgery and having great sex.

4. Is incontinence a major problem, a manageable problem or not a problem at all?

This was the biggest surprise of all. The day i had my catheter out I wa sable to hold it in while stuck in NYC and Lincoln tunnel traffic until we found a gas station with a bathroom. I have no issues at all with incontinence. No leakage at all, I can sleep through the night without having to go, and frankly, have much better stream pressure than I did prior to surgery.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?

In my case post traumatic stress and mild depression. But those are side effects to getting cancer, and at 40, and not to my choice of treatment.

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

Given my results, both with pathology and SE i'd be a fool to wish for a do-over. I've been very fortunate so far all things considered.
Posted 8/10/2011 11:40 AM (GMT 0)
Thank you very much for the responses. Perhaps not unsurprisingly, it appears that some treatments work very well for some and not so well for others. The hard part is not knowing the outcome before choosing a treatment. I'll continue contemplating and welcome any further contributions.
Posted 8/10/2011 8:03 PM (GMT 0)
1. Which treatment did you choose and how happy are you with that treatment? Did you have a choice regarding treatment?

I chose the Laparoscopic surgery to remove my cancer.  I am very happy with my choice and the final out come.  Yes, I had a choice to pick what ever method I wanted to get rid of the monster.

2. Were the after-effects of treatment better or worse than expected?

I feel the effects after wards were/are much better than before surgery.  I had a pretty bad back pain that had me bed ridden at times.  Shortly after surgery I didn't have the pain any more, and it has not come back!

3. Is ED a major problem, a manageable problem or not a problem at all?

Yes, but I also had the right side nerve bundle removed, so full recovery is expected to be a bit slow.  It's a problem but with time I hope to have it gone.

4. Is incontinence a major problem, a manageable problem or not a problem at all?

No, I'm pad free and have been for a few weeks since surgery.  Stress, such as lifting will cause a small leak, but nothing that can't be handled.  So it's manageable.

5. What other side-effects pose a problem? Are these effects manageable or do they pose a major problem?

I haven't noticed or experienced any surgical side effects.

6. If you had to do it over again, and had a choice, would you choose the same treatment? If not which treatment would you choose?

Yes, same treatment, Doctor, Hospital...

Posted 8/10/2011 9:41 PM (GMT 0)
1. Very happy with RALP. My Uro pushed for surgery, but he also mentioned seeds and RT. I only briefly considered Proton, CyberKnife and IRE (NanoKnife).

2. Better than expected.

3. No problem. I only took sample 5 mg cialis in the 2 weeks following surgery given to me by the surgeon.

4. No Problem.

5. None. I had to take it easy in the gym for a while, but I was back to where I was pre surgery within 3 months.

6. I would choose the same treatment. 13 weeks from DX to my first < 0.1 PSA. Anyone in the Delaware Valley should consider PA Hospital in Philly for RALP(although U of Penn has a good rep as well).
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