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Ed Moehagen lives in Wisconsin, USA. He was 57 when he was diagnosed on December 17, 2007. His initial PSA was 5.4 ng/ml, his Gleason Score was 3+4=7 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

Hi Guys,

I didn't have any urinary problems, but had noticed a decrease in ejaculatory volume, which I just took as age related. But a set of rising PSA tests, from 4.3 to 5.4 in a little over a year prompted my doc to send me to a Urologist. My Free PSA was 8. I'm in Madison, Wisconsin where there is a very good University hospital, and I feel my Urologist, Dr. Sean Hedican, is top notch. He specializes in Robotic surgery, using the Da Vinci equipment. A 12 core biopsy showed positive for PCa in all 12 samples, but my DRE's are "non-suspicious", and my prostate volume is only 25CC.

I have a good friend who is a retired Urologist from Saginaw, Mi. Dr. Joseph Aquilina, who I use as my "in house" consultant. He said I should have hormone treatment to shrink the cancer, and then either surgery or brachytherapy. After doing some research, I decided I wanted brachytherapy.

My consultation with the urologist was a good one, but he only talked surgery. He said I had a 90% chance of a "cure" with surgery. He did not suggest hormone treatment at all. When I asked about looking for any sign of spreading, he said "we used to do bone scans and MRIs, but the low rate of positives with your stage does not warrant the effort."

He didn't push it hard, though, and referred me to a radiation oncologist, Dr. Mark Ritter, at the UW, who did not recommend brachytherapy because of the amount of cancer I have.

He suggested focused beam radiation, and mentioned a "new" protocol that the UW has been using since 2003, on about 250 guys so far, where they use MRI coupled to a linear accelerator to deliver larger doses with fewer treatments, because they can be much more accurate. The standard focused beam treatment is 28 sessions, the new treatment is 12. So far, the results have been better than with the standard 28.

So I decided to go with the new protocol, and told Dr. Joe. He went wild..."what do you mean, no hormones? They could put you on 3-4 months of hormones and then do the seeds. What are they doing, using you for a lab rat? Get a second opinion!!! You are a young man...the beam radiation will give you rectal problems as you age. Surgery would be better."

So then I found YANA, and have been reading everyone's stories. This is really where someone can get the truth. There is nothing like it. Right now, I'm leaning back towards that new protocol, but I'm also very intrigued by the Chronic disease management approach taken by Dr. Wheeler and others. I see some guys here who have taken that route, and seem to be doing well...and surgery or radiation is still an option if things don't go well.

So, right now I'm still researching. I've asked for in-depth info about the new protocol, to share with Dr. Joe...who has a PhD in radiation therapies...but because he has been retired for some time now, perhaps is not up on the latest. He himself did surgery and seeds, but not focused beam...so there may lie his bias?

But in the "end" (literally) the decision is mine alone.

Wonderful resource here. I'll be back!

 

UPDATED

March 2008

 

 

After much research, I decided that Proton Beam was the best therapy for me. Unfortunately, my insurance provider didn't, so I'm going to do the second best, in my opinion, which is Hi-Art Tomotherapy. I've just started the preliminary work to be in an NCI clinical trial of dose escalation. If accepted, I'll be getting about 78gy of x-rays in the course of 12 sessions of radiation at my local cancer center.

 

UPDATED

April 2008

 

 

I just finished number 10 today. The treatment is quick and totally painless. I can almost fall asleep in the machine. I have some mild urinary urgency, and my rectum feels a bit like I overdid the hot sauce. I've certainly felt much worse with plain old prostititis in the past.

The 5 year data on the first 100 guys to do this dose escalation is good, with 95% disease free. Side effects have been minimal. I know I can expect some SE's in a few months, but I'm feeling very good right now. I'm told by my oncologist, Dr. Mark Ritter, that he has seen slightly more severe side effects during this treatment protocol, but for a shorter time period. He says the 2-6 month SE's are about the same as with the "old" protocol of 28 sessions. In theory, and so far this is being proven in practice, dose escalation of this sort, only possible with the imaging and deliver capabilities of the newest equipment does a better job of getting the cancer.

I'll keep you posted. Of course, this is my experience only, your results may vary.

 

UPDATED

May 2008

 

 

By the time I got to the last treatment, number 12, my rectal and urinary problems had increased. I met with the doc that day, and he said I should feel normal in a month.

The next 3 weeks were terrible. I had powerful rectal urgency and incontinence. I had to wear diapers, as the urge to go would hit at random times and overwhelm me. The problem is simple, really...the rectum is so sensitive that any sort of pressure sends the "I've got to go" signal, and it didn't matter if I really needed to go or not. Flatulance would give the same urge. I had rectal bleeding, and painful urination. As the rectal problems subsided some, the urinary problems increased. I'd be up 4-5 times per night to go, and didn't have much volume at all. No urinary restriction, but again...things are so tender that any pressure on the bladder gave me the urge to go. I learned to ignore most of the false alarms. After about a week of being pretty inactive, and staying close to the toilet, I started working (construction, mechanics, yardwork) and did pretty good. I'd tire easily, but could take a short rest and get up and work some more.

When I saw my doc one month post-treatment, he was very surprised that I had so much trouble. My urologist friend suggested that I might be more sensitive to radiation because I'm a fair skinned redhead. My radiation oncologist didn't think that made any difference, but I suggested he look at others who had trouble like me to see if there was any correlation. Presumptuous of me to suggest that, but that's what I would do! Look at those who had trouble and find the common factor. I figure someone had to make up the "bad side" of the statistics, that show that some % have trouble like me. Apparently, very few people have both urinary and rectal problems.

I could have got an anti-spasm drug, but by the time I found that out, the worst had passed. It's now about 7 weeks since the last treatment. I'm still in dipes, just in case, but I usually don't need them. I'm working at about 90% of my old capacity, and have no discomfort unless I work hard physically for a long time, then I get some mild dull prostate area pain. No sexual dysfunction, although orgasms hurt some.

It will be some time before I know if the treatment worked, and what kind of long term side effects I might have, if any. My experience was not typical...it was about as bad as it gets with RT, and it was bearable. Odd how much a guy can learn to live with, when he has no choice!

If I had it to do over, I would have worked harder to get proton beam therapy, though.

 

UPDATED

September 2009

 

 

It's been almost 18 months since the end of my treatment with "Tomotherapy".

My SE's never resolved. Urinary leakage and urgency...I have to wear diapers all the time. Erectile dysfunction; erections actually HURT, as does ejaculation. What fun is that?

But I could "live" with that, but a few months ago, I started getting more prostate area pain if I walked too much, and if I really exert myself, I'm sick for days afterwards. My Radiation oncologist seems to be looking only at the radiation treatment, and says that he doesn't think the problem has to do with the radiation, and pushes me off on my GP, who can't find anything in routine exams and physicals to explain the problem. I've been a lot more aggressive lately about it, and my hunch is that the PC has spread. My PSA never went below 3, and has been as high as 5.6, and the Radiation Oncologist says it is "hard to interpret", and also that he doesn't think it is cancer.

For some reason, my blood pressure is high, for the first time in 8 years. I never needed BP meds. The increase was pretty fast. Why? They don't know. Different things have been suggested and are being tested for, like Lyme (which came up negative) and auto-immune disorders (so far, also negative). But I've been having pain in my bones for about a month, and I tire very easily.

I'm waiting on more blood tests, but I think the truth will be revealed next week, when they do a bone scan. I'm really struggling here. I'm mad that they didn't look closer, sooner. I'm frightened by the notion of getting sicker and not being able to do much about it. I'm not too optimistic right now. I'll be back.

Thanks guyz.

Ed's e-mail address is: roadlessgraveled@yahoo.com