in turmoil due to biopsy results

Hello IanF  A warm welcome to the Online Prostate Community - I am so sorry to find you here.

There is a condition "Benign Prostatic Hyperplasia" or BPH - this is a condition which is caused by an enlarged Prostate - this often causes levels of PSA to rise. Another condition is "Prostatitis" this is an inflamed or infected prostate - again this can cause the PSA levels to rise. Both these are common in "older people" and at 57 - well that's not old.

My honest answer is I don't know and in your case I would be asking my team for answers.

I am sorry I am not much help - others may know more.

Best wishes - Brian.

Very puzzling Ian, scans show cancer although  you need a biopsy to confirm.

You have now had 2 biopsies and no cancer showing up, As Brian has mentioned PSA increase can be due to other things like infection etc.

Have u any more PSA figures apart from the two you have given?

What does the Prostate MRI show, often gives a tumour size and location within the gland.

Presumably u are going to see a specialist again soon.

Hope all goes ok and they can sort out the problem, perhaps not cancer, 

Best wishes 

Steve 

Thanks Steve

As soon as the results of the 3 scans came back They started me on a Course of Bicalutamide tablets and the first of my 6 monthly hormone injections

My PSA will have dropped because of this, I wont get a true reading again 

Ok Ian

Now I'm more puzzled, they are saying it's cancer but biopsy says no. And they r starting  you on HT

Trouble is if they r still looking for a cancer HT could mask it.

Ok I'm no expert, perhaps I'm. missing something.

At some point could be worth getting a second opinion 

Steve 

Again a new one on me - someone somewhere isn't telling you something. I have come across people who are "none PSA secreting" but not the other way around.

So from the 2 biopsies you have no Gleason Score and no TNM staging BUT the MRI shows "inflamed lymph nodes and shadows on bones". You are already on Hormone Therapy and a 6 month dose too!

The questions I would be asking your team are:

* Does the MRI scan show any cancer in my prostate and if so does it show it having left the gland.

* Where abouts in my body are the "shadows on my bones".

* Apart fro Hormone therapy whet other treatment is planned - Radiotherapy? - Chemotherapy?

All the above would have been topics for discussion at your MDT team meeting where you should have received a formal diagnosis and treatment plan.

If you are in England (but not the devolved Nations) I would download the NHS App (if you don't have it) and ask for FULL access to your medical records on the app.

This is just me thinking aloud!! I hope it helps.

Best wishes - Brian.

Brian I am thinking the same thing 

The urology nurse is very vague saying that everything is pointing towards Prostate Cancer but negative biopsy results. I am worried that it has spread from another area judging by the MRI, Bone and CT scans 

I will contact the cancer care coordinator and ask these questions first thing tomorrow

thanks Ian  

Hi IanF.

It's all a bit strange, 90 PSA is a high reading and it's showing on the scans so it's there. Have you seen the scans? It would be good if someone was to show you so you can see what they are seeing and if they can explain why they have started you on treatment. I'm wildly guessing (complete speculation) that they have enough to make that judgement call without the Gleason score. (acting on the side of caution?)  Maybe, because they can see it on the scans and you've had two blood tests that are showing a fast rising PSA, 60 to 90 in two weeks they think that is enough. If the PSA is a "true reading" it could show that you have an aggressive cell type in there with a monthly doubling time. So they have made the right decision to stop it in its tracks, which will happen with HT. Personally I would welcome that decision rather than letting it run out of control while they fiddle about trying to confirm what grade it is with a biopsy. Now that it's stopped, they can get to grips with what's next. Eg, it could be a very tiny fast growing spot of cancer that hasn't spread out of the prostate, curable and easy to eliminate by removal or a blast of Radio therapy. Ideal scenario. One thing for sure is that you have time to relax and take a breath while they get to the bottom of it. I think you probably have a very good team that know what they are doing through experience, but it would be a good idea if they could explain exactly what's happening so you can feel self assured and in control. Always ask lots of questions, it's your body and you will feel better with an open conversation with your team. Keep us posted on what's next as it also helps everyone here understand more about how this cancer works and what questions to ask.

All the best, L

IanF,

What did they say about your scans? was your bone scan clear? We saw all my partners scans as we had a second opinion at the "Royal Marsden" Because we had a problem with the shock and trying to understand what was happening and we wanted to clarify and confirm everything. We went over everything in an unrushed environment where we felt able to ask every possible question we had. If you feel you want that it's easy enough to contact any hospital and have your scans sent over to another consultant. Peace of mind and well worth the money at this early stage.

L

Hi Barry 

I have been told by my urology nurse that The bone scan indicated a spread to the bones and enlarged lymph nodes, so the cancer is there. They just cant find it 

I will contact the hospital and request a meeting to discuss the Scans, Biopsy and what is the treatment plan for me in future.

like you say the HT will slow the cancer down so I can feel a lot more positive while I wait.

thanks 

IanF

Hi IanF

Good Idea, If you have a long wait and you are feeling anxious just pay for the consultation. We had an instant (within the week consultation at the RM) at the end of November 22, once we had all scans, That was our second opinion, before the first! because the first opinion was at the start of Feb 23. My partner was immediately put on HT which was good because you can tick over, but it doesn't account for the stress of waiting roughly 3 months to fully know whats happening.  What I found was a bit upsetting was that when our NHS Consultant knew that we were paying , (December) he phoned and said we could see him that week if we were private. I'm still not sure about how I feel about that. So the result was that we were very informed with lots of types of drugs and procedures early on and that we could ask questions about. We tend to dip in and out getting procedures and advice if we feel we need to seek more. If you have private healthcare just use it. I believe the treatments are pretty much the same, possibly there's an ease of getting the drugs you want easier and certainly there's less waiting times, but the advice is the same. Anyway, looking at the wider picture, there are plenty of people here that have a similar diagnosis to you and they are happily ticking along with the excellent treatment thats on offer. There' s so many options of treatment it makes your head spin. Take time to read peoples experiences on this forum by clicking on their profiles and just reading their posts. You will be comforted to know that there are many options and many years available. Things are so good now that what wasn't possible 10 years ago is now possible. Men are living a full life span with good medication. You've found the right place for support and I hope you feel a little better now you've found us. 

L