Biopsy results, advice needed with high gleason score please

Just got back from the hospital. Obviuosly biopsy confirmed prostate but doctor scored dad at 9. we knew it would be high but just looking at other peoples signatures, cant find any quite as high. what does this mean??

I asked for a copy of the results, doctor said he would summarise and forward it to us, so I don't have anymore info that that. Can anyone help me to understand what this means for us please.

Doctor said it was positive that dad had had no paid at all since injections and no side effects.

I would be so grateful for any help and advice.

Lisa 

It's graded from 2 to 10, with 10 being the worst.

I have G9 and it's been 2 yrs since my surgery and I'm free of symptoms, except for a spell when the side effects from one of the drugs was making life crummy.

Now that I'm off that drug, my PSA is climbing a bit too quickly and they're about to re-stage (scans) me.

Last time they scanned me, due to rising PSA, they found nothing significant and I'm hoping for the same result this time.

If there are signs of tumour growth, they'll put me on some other drugs to knock it back.

As you can see, life can go on for quite some time with a Gleason 9, so don't worry too much til you have the whole picture.

Hope they're doing bone scans and CAT scans on your Dad to rule in/out any metastasis and keep them at bay.

Please stay calm, it's all very upsetting at the beginning but you'll be comforted knowing that it's not over by a long shot.

Thanks for quick replies. I was can't beging to describe the feeling in the 'pitt of my stomach' I got when opening them, (though I guess you will understand). It never ceases to amaze me how strong and positive you all are, and having took those initial deep breaths (which I must confess bordered on hyperventalition) lol! I feel ok knowing he's not alone.

I spoke to doctor about the questions I had and asked for copies of results, although he answered my questions, he seemed a little somewhat 'put out' by my pestering. I want to know the facts and get things straight in my head to explain everything properly to dad so that he understands as he's to polite to say any other. I know doctors are doing an amazing job and we're so grateful, so where do I go from here? 

Does a gleason score go down or is that just PSA? docs just said PSA was high but gave no figures

We already know from bone/MRI/CT scans dad had recently that cancer had spread to small part of liver, adrenal gland and 'peppered' in his femur, (dad was due to have hip replacement due to brittle bone disease which was when it was picked up).

Thanks again

Lisa x

One thing you can do is get a second opinion on the Gleason score. The way the score is obtained is by a pathologist viewing the samples under a microscope and assesing a number to the way the cells appear based on their level of experience at doing their job. Mine changed from 3+4=7 on the reading from the first lab to 4+4=8 on the second opinion reading from Dr. Jonathan Epstein at John Hopkins Hospital.

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Lisa

We all here know just what you are feeling..  The disbelief of hearing the "C" word..

I was only a treatable  G7  and I am fine.

The G9's here   ARE   the ones who can tell you the facts..

There is a football field between G7 and G9

Our thoughts and prayers are with him and the family !

DO NOT  give up - you have much to gain..

Second opinions are important, but do not use that excuse to delay things.

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Hi Lisa

Sorry you're having this grim period in your life (especially with Christmas etc looming)

You may find the doc is simply reluctant to give too much info to the person that is not the patient. (I don't want to sound trivial, but if you think of it the other way round and it was you being treated by a gynaecologist, then that doc would be reluctant to pass on your details to your dad)
If, however, even your dad (Barry) does not know what his PSA is, then I would find that a little odd. The uro should however be reporting back all his findings etc to your dad's GP so it should be possible to get some answers from the GP too. (If he's had the same GP for a while it may be a double-edged sword in that he may be at ease discussing stuff with him/her, or he may know him/her too well for something this heavy)

Also being in the UK, you are dealing with the historic way that NHS/UK doctors have treated patient's notes: a mind set that is basically that the patient shouldn't get to see stuff they won't understand. (I say that, even though my dad was a doctor). In the States and here in Holland they are more used to the idea that patients want information, plus the idea that patients would like to be able to decide what they want to do rather than simply get told what is going to happen by the doctor. For instance, my uro gave me copies of the original lab reports before I even asked for them, he also suggested I went away and investigated the options and then came back and told him what I wanted to do

As for the state of the Cancer, well on the basis of your initial posts about how bad it was, I don't think the Gleason 9 makes it any worse. In fact you could see the fact that it wasn't a 10 as a glimmer of light.

I'm no expert, but in my opinion:
I think that with things the way they are surgery is not likely to be the way to proceed, so the oncologist/radiologist are probably the people to tackle it not surgeons. (urologists are nearly all surgeons). What it boils down to is that because the cancer has already "escaped" surgery to remove the prostate will/can not stop it spreading, and all it will do is leave your dad with a whole bunch of side effects without any benefits from the surgery.

Chemicals (hormones etc) can suppress the cancer, to slow down the rate of growth; a regular session of radiation aimed at the prostate can shrink the cancer there. If mets start causing pain in the bones, then small doses of radiation can help deal with that.

If your dad is having, or starts to have trouble peeing, because the prostate or the cancer is pressing against the urethra, then there might be a need for some (minor) surgery to relieve that.

I think it will also be better to pay more attention to the tips from the guys with Gleason 9s than those from me.

All the best to you and Barry
Alf

Bump..