Questions After Biopsy Results

Hi HFTB and welcome.

Yes I can see the concern although it's good that Gleeson not high.

Tumour size is fairly large at 2.6 cm so a treatment pathway can hopefully be planned soon.

Not good news about the delayed bone scan, there could be an argument that should start on HT to hold back any spread but they probably want to to do the bone scan first.

I think it's unlikely PSA will come down but remember that I am no expert.

All the best anyway and see what others say

Regards 

Steve 

First of all welcome to, as many say, to the club no one wants to join. Despite not wanting to join, you can benefit by being here. 

Whether or not the PSA will come down depends on whether or not there is a second, underlying, cause. I remember someone saying that could happen, though I can't find the quote. Someone with more knowledge, or a better memory, will help you with that. 

There are some people on here who had VERY high PSA levels at diagnosis, and they may be able to help. 

In terms of the delay, you might find this video helpful: 

https://youtu.be/aotF2SPzCmU?si=SrjEVOpC5toiznyl

I have found a number of videos on this YouTube channel very helpful, even comforting. The channel belongs to the American Prostrate Cancer Research Institute, which is a non-profit (charity) dealing with raising awareness as well as research.

Also, in terms of delay, I can only really think of what I would do. With my own experience and the knowledge available here I think I would be pressing to start hormone therapy. The reason for this is that it effectively stops the blasted cancer from growing. That way it will still be where it is when you eventually decide how to cover it. 

Having said that, there might be perfectly good reasons why this shouldn't be done. In which case I would be asking what they were so I could think about it more, and perhaps ask questions if this group. You will always get answers and opinions. 

For myself, at the point of diagnosis 11 months ago, I was pretty much doom and gloom until I read on here that the best way to deal with this is to learn as much as possible. 

I have been trying to do so, and to become an "expert patient". I don't have the knowledge of the oncologist, but I am building up to ask the right questions. If the T2 Grade 7 holds up, it is likely that your husband will beat this, although it may take some time doing it. 

Best wishes

Hello Hopingforthebest and welcome from a wife. Prostate cancer is normally slow growing and I can understand your concerns about the delays in getting all the tests done but it is better to get all the information together so that the correct options are given to you and you don't risk under or over treatment. When my husband was first diagnosed I can remember the Urologist being insistent that he had the bone scan before starting hormone therapy because of the flare that this can cause which might show up as false positives. In your situation you have a PSA which puts your husband into the high risk group so I think the experts are wanting to make sure that there are no distant or bone metastases which are causing this. The T2c means that cancer has been found in both sides of the prostate and contained but the Gleason 7 (4+3) is also higher risk which will mean that treatment is a good option with curative intent. If the experts are saying that there is no infection in the prostate (Prostatitis) then I doubt whether the next PSA will be much different from the previous two but remind your husband not to ejaculate or do vigorous exercise for 48 hours before he has it.

This is the book I usually point people to as an introduction to prostate cancer diagnosis and treatment.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Please ask any questions no matter how small or trivial you might think them and we will try and help.

Hello Hopingforthebest 

A warm welcome to the group from me, although I am so sorry to find you here. You would be amazed if I told you how many "page views" we have and we know there are many more "lurkers" than actual Community Members.

I thought I would throw my hat into the ring and offer my opinion.

* No I don't think his PSA will go down. There are reasons which could inflate the reading such as sex, strenuous exercise or riding a bike before the test - but twice?

* Because of his PSA levels, they are concerned the cancer may have left the Prostate and gone walkabout (metastasized).  My initial PSA was 182, and for just the same reason I started Hormone Therapy from Day 1.

* He's a T2C but he's the high Gleason 7 (4+3) as opposed to (3+4) ant that's from 6 out of 8 samples being positive.

Based on the above facts I would:-

1. Remind your husband the "doom monger" that 98% of men with Prostate Cancer die WITH It not OF it. You can tell him you have spoken to me with a PSA of 182 (4 years in and I am fine. (You can read my full journey bu clicking on my name or avatar).

2. I think you need to go back to your team. Ask for some action - I would suggest starting Hormone Therapy, ASAP and if necessary remind them of the Cancer Pathway - 62 days from Consultant meeting to start of treatment.

3. If 2 doesn't work - go to your hospital PALS office (Patient Advisory and Liaison Service) and see if they can help. To progress on a cancer journey you need to advocate for yourself and be gently persuasive.

4. This is the first time I have encountered a "national dye shortage" - interesting.

I hope this helps - please do let us know how you get on.

Best wishes - Brian.

Hopingforthebest said:

possibly HDR brachytherapy.

Yes!  Ideal candidate, given the PSAD (PSA density) and lesion size and Gleason score.  TBH, if it was me, I would be asking for bicalutamide (precursor to hormone therapy) to start right now, to stop the cancer in its tracks.  The bone scan should be a formality.  Then on to hormone jabs & brachytherapy HDR boost.   AW

Thank you so much Grundo mstev2 Alwayshope Millibob Alpine Wanderer for your replies.  So much appreciated. 

i read all your thoughts to my husband.  It’s hard to discuss concerning issues when you’re trying to keep things positive, but the conversation went pretty well.  He could see how helpful it is to get input from people who’ve trodden the path. 
(In the interests of transparency I even admitted I’d called him a Doom Monger!)

As a result, he plans to call the specialist nurse tomorrow and raise concerns/ask further questions as suggested. 

We’ll also look at the resources linked - thank you. 

We take the useful point that we may need to become more insistent.  Our healthcare trust seems under a lot of pressure. 

Not to mention that our GP surgery apparently can’t do the PSA re-test until the end of the month because of staff shortages. Even though they were told of the urgency. We’re not having that!

I’ll update in due course x

Good morning Hopingforthebest  that all sounds very positive, especially as you discussed things late last night.  Now is a new day, to put those discussions into action.  Have a look at the various bios of the members (for my brachytherapy boost, for instance, click on the snowy scene next to my name).    AW