between a rock and a hard place- input invited

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Problems of a newcomer to the disease:

I have yet to find expert medical advice here. We have socialized medicine, which makes everything theoretically available- but the quality of the professional people I have met so far is not encouraging... Also, we live in a rural area and don't have a car, so transportation is difficult and time consuming. I spent most of last Monday traveling to a clinic just to pick up an authorization to apply for a CT...

I feel like I am caught between a rock and a hard place:
Young enough (56) to consider an operation, but with a small likelihood of total success (Gleason 9, PSA 23, T2c).
Chest X-ray and bone-scan- apparently clean. Waiting to do CT.
The 2 urologists I spoke to point to radiation and hormonal treatment, and as soon as possible.

On the other hand- I have no symptoms now, except for ED (declining for years), and need for very frequent urination. If I understood correctly- neither of these problems will be helped by any of the treatments. But the radiation and or hormones will cause a myriad of new, long term problems...

Additionally- sounds to me the the treatments are improving yearly- more effective and less side affects...

Perhaps I should wait?

Input welcome.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 129

Standard disclaimer applies here--I'm just someone who's been to meet the Wizard (multiple biopsies, surgery, radiation). Those are my only qualifications.

I don't think there are advantages in stepping back and waiting, with your numbers. Although prostate cancer can be a turtle compared to other cancers, a Gleason of 9 indicates aggressive disease. Doing nothing at all could lead to a swifter and very unpleasant demise. I know that's grim, but that's the way I see it. On the positive side, you may have a chance of completely avoiding such a demise, either by getting rid of the cancer or delaying it through treatment so that it doesn't bother you and you die at a ripe old age from a spectacular cardiovascular event, like most of the population.

As to the scans, you've just crossed over the threshold, PSA-wise, where a small metastasis *might* show up. However, clean scans don't rule out distant disease. That is a conundrum with prostate cancer. (On the other hand if a scan showed distant disease, then you'd know that you shouldn't bother trying for a local cure.)

All treatments bring on a risk of side effects. But there's the other side of the coin--the benefits those treatments provide.

Hormone therapy (ADT) in the long term, has been linked to health problems. But it can also throw prostate cancer into remission, sometimes for many years.

Now--as to radiation--it sounds much worse than it really is. External beam radiation, like the IMRT I had, is a very easy treatment. You just lay down for a few minutes (I watched TV), and then get up and leave. This gets repeated 5 days a week for a couple of months. Side effects from IMRT are MUCH milder than with the radiation treatments offered even 10 years ago. The beam is sculpted and shaped so that it hits what the doc wants, and delivers very little radiation to surrounding tissue. In my case, at 9 months later, I have some slight bowel issues--I just go a little more frequently than usual. That's it. I have a little ED from my surgery, but radiation didn't aggravate it. No urinary problems. (That's just my anecdote, but I think it's the norm for IMRT--sometimes you have side effects, but they tend to be mild and transitory.)

That's just my two cents. Don't despair! You haven't been handed a death sentence, just a big challenge.

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Replicant-
Thank you- good to hear from people who already dealt with the decisions I am facing (and are still here to tell the story...)

johnw100

Watchful waiting criteria is usually for early stage Gleason 6 PC. I agree that it is not a good option for agressive cancer as indicated by your diagnosis.

More recent term is active surveillance to better reflect that suggested approach for low risk PC where agressive lifestyle changes and careful monitoring is done.

The treatment suggested by your doctors, radiation and hormone therapy is the most usual suggested treatment for higher risk patients.

It is correct that treatments have and are improving, especially radiation equipment and treatment methods.

If you want to have time to explore those options more fully, an option to discuss could be hormone treatment or one of the medications known to halt or slow progression in the meantime.
An advantage of hormone treatment prior to and during ratiation is that this approach is also believed to enhanse the radiation therapy.

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Thanks John,

[quote]or one of the medications known to halt or slow progression in the meantime[/quote]

I hadn't heard of this. Names, efficiency, timespan, side affects?

johnw100

I have recently read of different protocols undertaken by some doctors, including Dr Wheeler from The prostate Center who has published details of his approach on his site and in the June 07 newsletter of Patient Advocates for Advanced Cancer Treatments Inc.

His therapies include mainstream medications along with natural products, which he indicates provide good results and are more easily tolerated with fewer side effects than the usual hormone treatments.

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Thanks for the reference.

After reading the critiques of several accepted treatments, and the boosting of some alternative treatments- I am starting to wonder if the major problem before me at this time is a medical one, or perhaps more important deciding who to believe/trust...

I am also starting to ask myself- at what point do I cross over the threshold from not having enough info- to having so much it hampers dealing with the decisions...

acedave3 · Regular Joined: 03 Sep 2007 Posts: 19

Hi. I recently was told my psa was 12 and a biopsy showed all samples contained cancer!!!. my Gleason came in a 7. I was completely blown away since my brother had his removed and my doctor was aware of the problem and so assummed (wrongly) that in all the many blood test that I have had since it included a PSA. The Doctor did the finger thing during my annual check ups but in hindsight I dont think she really knows what she was looking for other that it is incl. in her list of thing to do to protect her against a E&O lawsuit.
At any rate I have now completed my hormone treatment which was a piece of cake and now looking forward to the radiation which, expained earlier on this site, and to me, by several people that it is not that difficult or severe. I want to get this over with and get on with my life. I know you will start feeling better once you start you treatment because something is being done about it which is a step in the right direction. Dont give up ...Fight and take a positive attitude... it means everthing!![color=black][/color]

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Acedave-

Thanks for writing, and your encouragement
Could you explain a little about your experience with hormone treatment, since that is probably what we will meet first...

Health!

acedave3 · Regular Joined: 03 Sep 2007 Posts: 19

Sorry my message was repeated three times but a notice kept appearing telling me that it was not being proccessed. I tried three dif
ferent approaches and now find that they all worked!!! LOL
The radiation consist of taking two pills a day for a month. on the first day before taking the pills they injected a substance into my stomach which looks like a little bump which is about 1/4 of an inch long and you can feel it externally. Apparently this releases the medication slowly over a three month period. My bump is long gone and the radiation treatments are scheduled for Jan. and Feb. They have decided to do external radiation in my case so I went in and they tatooed me in 4 spots to form an X were the radiation will concentrate the beam. I now go for 5days a week for 2 months for about 15 minutes. I am dealing with the Cross Cancer Hospital in Edmonton and they are rated as one of the best in Canada, for which I am thankful.
I hoped this has helped you and I certainly wish you the very best in your treatment. If I can be of further assistance please let me know. Dont be confused by all the big words and alternate solutions being thrown your way. Trust your Doctor and if not satified get a second opion{thats your right!!} Regards Dave

In

Dave

Fixed.

Sometimes you have to say things 3 times to be noticed. Wink

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badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Hi Dave,

Thanks for sharing.
Here, we are still waiting for the CT (next Tuesday), and my first visit with the oncologist- 2 weeks after that.
If we can get through all the waiting, and then the decision making, - the rest should be easier...
May all continue to go well for you!

Menachem

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Hi Dave,

Thanks for sharing.
Here, we are still waiting for the CT (next Tuesday), and my first visit with the oncologist- 2 weeks after that.
If we can get through all the waiting, and then the decision making, - the rest should be easier...
May all continue to go well for you!

Menachem

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Hi Dave,
Thanks for sharing.
Here, we are still waiting for the CT (next Tuesday), and my first visit with the oncologist- 2 weeks after that.
If we can get through all the waiting, and then the decision making, - the rest should be easier...
May all continue to go well for you!

Menachem

badtrip · Regular Joined: 02 Dec 2007 Posts: 33

Hi Dave,
Thanks for sharing.
Here, we are still waiting for the CT (next Tuesday), and my first visit with the oncologist- 2 weeks after that.
If we can get through all the waiting, and then the decision making, - the rest should be easier...
May all continue to go well for you!

Menachem

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