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Re: What to ask my Dr. tomorrow?

Jay,

I would suggest getting another PSA before the biopsy. The biopsy will raise your PSA. BTW your primary care Doc should have sent you to a Urologist when you had the 6.5 PSA. Men are normally sent to a Urologist after there PSA hits 4.0. Even if the Urologist chose not to biopsy he surely would have monitored your PSA at least every 6 months. I'm quite certain that your PSA would have been higher 6 months after your 3/2011 reading and you would have gotten a biopsy in 2011. I know this must be upsetting to hear. Keep in mind that this is not a death sentence. They have existing treatments that are effective and are coming out with new treatments all the time.

If you ever want to just kick this around with someone, I would be happy to talk to you anytime.

Fred
707-255=6645

Re: What to ask my Dr. tomorrow?


Fred,

Yes, the fact that my primary Dr. should have done more does not escape me. I remember he did talk a little about it but I guess it didn't sink in and he made no effort to set up an appointment in six months or so.

But, it does absolutely no good to dwell on it. So I plan on generating no negative energy on anyone's shortcomings...myself included.

Although your idea of doing blood work again before the biopsy makes sense--it's really not doable because of scheduling issues, etc.

In my research there are many studies on nutrition and how it relates to prostate problems. My pipe-dream is that my Dr. and I can agree to give it some time and see what I can accomplish by going to a plant-based diet, etc.

And I know that this is overly idealistic, but maybe that's whats keeps me going at this very minute--and what can be wrong with that?

And one of the other things that I have clung-on to is the fact that ultimately I'm the one in charge and nothing can changed that; the doctors work for me

Thanks for the contact info.

Best,
Jay






Re: What to ask my Dr. tomorrow?

Jay,

I like your attitude. Your driving the bus.

fyi. There are labs that you can access on line that do not require a prescription and the cost to get a PSA test is around $50. I found them just as accurate as a hospital lab. The one I used is " Private MD Labs" . They usually have a lab within 25 miles from you, assuming you don't live in the boonies.

Re: What to ask my Dr. tomorrow?

Thanks for the info.

I live in San Antonio, Texas and this area is full of hospitals, medical universities and everything in between.

So I'm sure there are labs everywhere as well as many, many doctors and surgeons to investigate if needed.

jay

Re: What to ask my Dr. tomorrow?


The biopsy did not turn out well. The Dr. called and told that yes indeed I did have a "little" cancer.

I ask him how cancer is measured and he says there is a grading scale of 1 to 10 (one being idea). He said I was a 9! So much for a "little" cancer.

So, the bone scan and the CT scan is this Tuesday and we'll go from there...it's probably spread according to the docs.

Well, I thought my 230 PSI was some sort of fluke--not so--it's just that bad.

So, I'm just wondering what's next...

Re: What to ask my Dr. tomorrow?

Jay,

Sorry to hear about the biopsy results. Even if your scans are negative your docs will have to assume you have metastatic disease. I would assume they will start you on lupron or the equivalent med. I would suggest that you find an oncologist that uses ADT3. You should actually get casadex for a couple of weeks before starting lupron.

Some men find Androgen Deprivation Therapy difficult but I thought is was a walk in the park. The only certain side effects are, loss of libito, fatigue, weight gain on the tummy. Most men tolerate it pretty well.

It is very likely that the ADT3 will get your PSA down to a very low level and they have a lot of new drugs that can be used after ADT3.

Best wishes and hang in there.

Fred

Re: What to ask my Dr. tomorrow?

Jay -just an amendment to Fred's advice. Fatigue and weight gain are not CERTAIN side effects. The other he mentions is, I'm afraid.

Given extra attention to diet and exercise you can not only maintain your weight but probably get any surplus you are now carrying off. Fatigue comes from extra weight, I suspect. After nearly seven years on ADT, I'm lighter than I was at the onset of this disease and probably more active!

So be positive about life, set some challenging targets and stick to them!

OC in England

Re: What to ask my Dr. tomorrow?


Thanks Fred and OC for your input.

Based on what we know so far--am I going to be able to work during all this? I wish there were no financial component and I could devote 100% to getting better without worry about bills, etc. But that isn't the case.

And secondly--why do I feel so well? And when might that change?

Thanks,
Jay

Re: What to ask my Dr. tomorrow?

Jay,

Most men can work during ADT3. Most men do feel well at this point in the journey. With the advent of the PSA test it's extremely rare that men have symptomatic disease at diagnosis. Most men with bone metastasis do not have symptoms
until very late stage disease.

Fred

Re: What to ask my Dr. tomorrow?

Jay, a friend of mine had a PSA reading much much higher than yours about 8 years ago. The initial prognosis was not good. He is still going strong after taking various new/experimental hormone treatments for periods like 6 months or so and then taking a similar period off so that the cancer doesn't build up an immunity to the treatment. I think his current PSA is about 4.

Re: What to ask my Dr. tomorrow?


Thanks for sharing that story. I have really not heard of those "off the charts" PSAs before. It's very encouraging being mine is 230.

Well, the scans came out positive and it has settled in my lymph nodes, a bit on my sternum and also in my pelvic bone.

My lower back is killing me and I feel nauseous. But it may just be stress.

Tomorrow I start with Degarelix and will eventually switch to Lupron.

I sure hope I can eventually be on an intermittent program as I'm just not crazy about what's going to happen to my body and don't really know what to expect.

Jay

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