Help me understand?

[Bab52413]

Been diagnosed for 2 months severe prostate Gleason 9. Havent taking anything for cancer or treatment. Did some scan and it seemed to be clear. Havent done CT scan yet and Dr wants to wait. Is there any hope for the frequent urination and half emptied bowels? They are terrible. Never sleep. And now with not knowing I dont want to sleep. Answers please?

[noirhole]

Get a second opinion at a medical facility that specializes in PCA or other cancer. If you are your best advocate in keeping yourself alive. You will also feel better in control which is very important. Where do you live?

[Hidden]

The biopsy is least informative test. My dr waited too. Mri showed tumor out of prostate. Delay these tests and only you will pay the price. Get a better Dr and facility.

[NPfisherman]

Get yourself to a Center of Excellence for prostate cancer like Memorial Sloan Kettering, Mayo Clinic, MD Anderson, Cleveland Clinic, Johns Hopkins, etc...post where you are at and someone can give you a name of a facility and a good Medical Oncologist....get on it ASAP....watchful waiting with a Gleason 9 is bad advice...if you are lucky and it is localized disease you may be able to be cured...Good luck....

Don Pescado

[pilot52 in reply to NPfisherman]

Listen to NPfisherman.....and go now my son ....does your doctor spell his last name M-O-R-O-N? .....I had 12 cores all 9s. Grounded Sky King

[Fairwind]

What is your PSA now ? Do you have a printed copy of your biopsy report? If not, ask your Urologist for one. Then have a Medical Oncologist read it and explain it to you...

Traveling to a "Center of Excellence" is easy for some, much more difficult for others..Any decent sized city will have a cancer treatment facility that employ M.O.'s who can at least give you an idea as to what's going on.. The "Centers of Excellence" don't have a patent on providing effective, up to date cancer care...

[AlanMeyer in reply to Fairwind]

I agree that there are many excellent oncologists who don't work at centers of excellence, but centers of excellence are good places to look for them.

Here's the National Cancer Institute's list of NCI Designated Cancer Centers: cancer.gov/research/nci-rol...

I'll bet money that if the doctor who is letting you go two months without treatment gets cancer himself, he'll start looking for treatment on the first day of his diagnosis.

Best of luck.

Alan

[Magnus1964]

What is your doctor waiting for? Find a new doctor.

[Tall_Allen]

Where are you?

The bone scan and CT are usually done the same day. Why has it taken 2 months? If the CT scan is negative, you may have a curable kind of prostate cancer.

I don't know why you have half-emptied bowels (it may be unrelated), but there are good medicines for the frequent urination. Ask your doctor for a prescription for Flomax or Rapaflo, or some other "alpha blocker." If your prostate is enlarged too, finasteride may be helpful. You can also ask for a sleeping pill to get you through the night.

[407ca]

Bab52413

I think Fish had it right. You really need to find a better doctor and hopefully, a cancer center instead of the local hospital / practitioner. When I had a suspected recurrence, I had a CT, bone scan and MRI all the same day. I see no medical reason to wait. Get on it.

All the best.

[Schwah]

any Experienced oncologist who specializes in prostate cancer will disagree with the waiting. Find another MO ASAP.

Schwah

[Ralph1966]

Please let as know your age, your most recent PSA result. As far as I know if your PSA is below 20 you may still not gave your cancer spread yet, but still need MRI with contrast.

If you need time to decide the treatment as you said you don't want Radiation then go for surgery. Ask your urologest if he agree to start casodex oral with monthly lupron to slow down the cancer till you have surgery. Do these things ASAP!

[gamemaster34]

You can tell us of your location and we may have some recommendations for doctors or cancer centers.

[SuppWife]

My husband had a Gleason 9, too, with a clear bone scan, but he was diagnosed because he ended up in the ER with acute urinary retention. His prostate was very large (88 grams) and it was absolutely affecting his bowels. He was chronically constipated and described an inability to empty.

At the time of diagnosis and even after surgery his doctors believed the two were unrelated but we scheduled a consult with Dr. Earle Burgess at Levine Cancer Center in North Carolina and he said “absolutely” the constipation and bowel issues were related to the prostate cancer.

I would recommend you find another doctor. You surely need to be receiving some kind of treatment.

May I ask your age and what was your PSA at diagnosis? My husband was 65 at dx with PSA of 34 in March of last year. No identified spread. Current scans are clear. He’s doing great now after prostatectomy and 8 months of Firmagon shots.

[john205]

Waiting to complete the scans sounds reasonable but why the delay? I would think there are many treatment options available - Surgery, radiation, or androgen deprivation may play a roll now for what you describe. Ask again, especially if you are having symptoms.

[john205 in reply to john205]

...And I agree with all the recommendations to find a center or excellence or at least another opinion ASAP, but you will have to do it yourself. You may have to travel to do it. No one else will do it for you.

[Balsam01]

I would recommend genomic testing with a Gleason 9.

[RonnyBaby]

I was also a G9 at Dx (about 2 yrs. ago).

I was told 'advanced and aggressive' !!!!

My PSA ? - try 300 + !

OK - enough with the explanation marks .....

YOU need to do more testing / staging analysis to determine the most appropriate treatment to follow.

YOU need to be your own advocate and do some research / reading / learning to take

care of yourself.

I glanced at a few of the other posts and agree with the overall concensus.

Also note that this is NOT a time to panic.

I'm doing very well (thank you) after treatment and have replaced gloom and doom with renewed optimism.

The same should apply to you.

We wish you well in your journey to fight back.

[Hidden]

What type of specialist are you seeing. A Gleason 9 is nothing to jack with. Since 2003, I have had over two dozen nuclear bone scans and the soft tissue CT scan was always on the same day.

Get yourself to a real pro. A medical oncologist who specializes in advanced prostate cancer. I found my guy at the medical school and teaching hospital doing research on genitourlogic cancers and teaching new doctors.

Final note: just because a scan it clean today, does not mean it will be clean in six months. Have a discussion on micro-metastases.

Gourd Dancer

[snoraste]

G9 require immediate action. Do NOT wait and see. Like everyone else is saying, you need a prostate cancer specialist at a reputable clinic.

[j-o-h-n]

Greetings Bab52413:

See a good Pca Oncologist asap.

Would you tell us more about yourself. Age, location, treatment center, Doctor(s) name(s). All info is voluntary but it helps us help you and helps us too. Please direct you data in a future post (not to me or not today). Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/03/2019 6:35 PM DST