Hello, my first post

Hello,

It is possible to have a high PSA but not to have aggressive cancer. I was diagnosed in 2012 with a PSA of 8.3 which had doubled to 16,6 last year. My cancer was not aggressive but in the 11 years had managed to get to T3 stage, so demanded some action. I had radiotherapy and hormones in November and my PSA is now non-existent. I'm 77. I know someone with a PSA of 89 and he is cancer free.

The first thing to do is remove the 'likely' from your diagnosis. Ask your oncologist to tell you if any tumors were observed on the MRI or if you are having a biopsy to determine exactly what is happening. Can they feel any lumps and bumps when doing the DRI?

Also ask,  if there is a problem, what stage it is at. Nobody knows whether a cancer is aggressive unless it progresses rapidly. Your PSA doubling time will give an indication, but is not holy writ.

Think of it this way: if it is not aggressive or not even cancer, cancer of the prostate is one of the cancers least likely to to kill you! It is often said that you will die of something else before PCA gets a chance to do you in!

The future is not bleak, treatments are improving all the time, but you need a definite diagnosis in order to decide what to do, or hopefully, what you don't need to do.

Best of luck!

Thanks for your reply Jonno,

When the urologist did the digital exam he said my prostate was a bit hard and lumpy and it could be cancer.

I'm still waiting for the results of the scans when more will be revealed, but I guess the next step will be a biopsy.

I'm a retired engineer, I spend a lot of time researching things, I seek knowledge, good or bad. Hopefully this forum will give me more data such as yours, I hope so.

I read that most cancer cells are fuelled by carbohydrate, and cutting off sugar will not kill them, but can slow their progress.

In the absence of carbs, normal cells can convert fat to ketones for fuel, but cancer cells cannot feed off ketones......there seems to be a fair bit of data supporting this so I'll give it a go, at least I'm doing something. The additional benefit is losing some weight!.....not that I'm overweight anyway, but hey ho.

As soon as I get my results I'll post them on here and hopefully I can learn more, and it may be helpful to other people in the same position.

Glass half full always!

Hello,

I’m new here as well. There seems to be a lot of help available on the forum. 
I also found the Macmillan telephone helplines a tremendous help and if you haven’t called them before I would thoroughly recommend it. They can give support, information and practical help too.

I take you have not had the scan results back yet? Hopefully they should not take too long as waiting can often be the worst part, either way I hope they come back clear. 

Re diet, yes, I have heard a lot about diet affecting cancer, either way a healthy diet is never a bad thing so well worth doing and as you say it gives you something positive to focus on.

Take care and stay well,

Nor

Hi Nor6,

Thanks for your reply, I have just had a call from my Urologist, generally good news, he said the bone scan was negative, although there's one small area where there's an anomaly they want to X-ray.

The MRI showed what they already suspected, the prostate is enlarged and a bit lumpy, but nothing else showing up which I assume means they didn't see any obvious metastases.

Next step is a biopsy.....I think it will probably be positive, can't think of anything else which would show a high PSA level, just hope it won't be too aggressive.

If it's slow growing I will consider myself very lucky, if not I think they may remove the prostate.....next wait is for the biopsy result, but the Doc phoned me straight away with the results which I am eternally grateful for, nothing worse than waiting for the post for every result!

Fingers crossed

Hi T

So not particularly bad news then. It doesn't look like the Mri has picked up much, not too sure what  an enlarged and bit lumpy prostate means in Mri terms. . Still doesn't have to be PC , could be BPH (enlarged prostate), yes biopsy next possibly, could be worth trying to find out what exactly the Mri picked up, does it actually talk about a tumour , if so , size?

either way if it turns out to be cancer looks like easily treatable

Steve

The MRI shows T3a lesions which extend beyond the prostate capsule. It's pretty certain to be cancer, but agressive or not? Only a biopsy will tell. It possibly hasn't extended beyond the prostate into surrounding organs, but the next stage, T3b is when this happens.

For this reason I am quite concerned to get things moving asap.

This is my next question, the report was nearly 3 weeks ago, how long does it normally take for the NHS to react to this? The MRI and bone scan were very quick, but it's gone very quiet since.....

Should I try to contact the Urology dept, I don't have any point of contact for help and assistance?

So is it the biopsy report you are waiting for, T3a , surprised they haven't started you on hormone therapy to calm things down until the RT starts

Steve 

Thanks for your reply.

Exactly what I was thinking, what's wrong with starting hormone treatment now on the assumption that it is PC?

The biopsy can then be a confirmation.

I'll ring the Urology Dept tomorrow and float that idea, but I don't have any point of contact, and it's this information vacuum that's so concerning.

Hearing all the news about the dire straits' cancer care in the NHS is in today doesn't help much....

Def call the urology dept, T3a , u need to start something, don't want it in vesicles or lymph.

Good that not in the bones.

Ask them what the Gleeson is

Good luck, let us know

Steve 

Hi T, my husband was 75 last July and went through all the investigations ove the autumn. Result T3a N0 ( no lymph node spread) M0 ( no mets) Gleason 4+3 =7. Prostatectomy hardly dis used due to his age and also because he had already decided he did not want that. Like yourself, we found the delays between tests and results very stressful. We told the hospital that we were prepared to take a short notice cancelled appointment and that helped us get through the system more quickly. I kept a diary of all the people I spoke with, their names and their contact details and was not backward in coming forward requesting the care and treatment he deserved! I’ve learned that if you don’t push you fall by the wayside!

The thing to remember is that if a cure is not possible ( and it often is) prostate cancer can be managed for many years as a long term chronic illness.

getting your head around the diagnosis and treatment is some feat but, for me, researching the literature helped a lot,

best of luck