Have my fingers crossed for the results of your scans.  It was nerve wracking waiting for the bone scan result but the consultant told the nurse to call me straight away when it was good or at least not bad news.  It is a very stressful time and I am rooting for you!

Happy to compare notes.  I know my consultant was a bit frustrated that the biopsy appointment had to wait for the MDT review at the hospital because at our PSA level we are probably going to need a biopsy.  Do you have a biopsy appointment or will that wait until after they review your scans like it did for me?  He also said it would be an urgent case and it took three weeks to schedule post-review.  I've no idea if that is fast, slow or the normal waiting time for a biopsy.

 As I understand it you can have the PSA tests until your biopsy.  After that the results will be meaningless so I might even have one more on the 7th to see if there is any trend.  In general though I am focusing on the test results because they seem to dictate the next steps.

Take care

Rory

Hi Matthew

, just found this post and here's my numbers for comparison..

I went for routine tests at age 53 in 2017  as i felt i was peeing more often. First  PSa then 3.4 put on active surveillance. in late 2019 MRI showed some swelling of prostate. so biopsy in dec 2019 (transperennial) gave gleason 3+3 leading to template biopsy in feb 2021. this gave gleason 3+4. 

another MRI in april 2021 and review by team gave T2a diagnosis so offered Brachytherapy. This was August 2021 but Brachy failed due high calcium levels in prostate blocking ultrasound.

I'm now on very short wait for protatectomy. last PSA was 4.3 in December (it varies between 3.2 and 4.8 over last three years). So T2a and PSA 4.3. Consultant puts me 'right on the cusp between active surveillance and surgery). The choice is very difficult..one day i'm thinking i'll wait to avoid the potential and certain side effects and the next i'm just thinking..'get it out!'

I hope you are as lucky as can be in your journey and any comments on the above also welcome,

Simon

Hi Rory [@Jellies]‍ and Simon [@SDC8]‍,

It's good to hear from you Simon and thanks again Rory for your input and best wishes.

Rory and I are very similar in terms of PSA and initial DRE findings...see above. I think your post review biopsy appointment is rather slow, my first consultation was today and I am booked for tomorrow morning first thing. That said, my second DRE today shows significant advanced cancer.

So unfortuntely, I think that's where our outcomes may change Rory. Today at the Prostate Unit at our hospital I had a consultation and a second DRE as I said. The previous first DRE conducted by our lovely GP suggested that, in his view, the prostate was essentially fine but with a suspicious firmness on the top left hand side of the gland. The specialist today reported that the majority of the prostate is hard, noduled - both sides, top to bottom. Very matter of factly I was told that the best I could hope for is Stage 3 but it is more likely with a PSA of 61 and the DRE findings, at stage 4. He also said that it is almost certainly inoperable becuase they do not remove porstates if your PSA is over 20 anyway. 

Naturally this came as asignificant blow, my wife and children are distraught. I am more worried for their sakes than my own.

Tomorrow I will have biopsies and later in the week CT bone scans. I have had inexplicable pelvic pains in recent weeks (not months) which is a cause for concern too. The only positive indicators relate to the fact that my original PSA blood results tow weeks ago suggest all my other functions and markers are normal, which "might" suggest the cancer is not quite setting up shop everywhere. We shall see.

So chaps - at this moment, I would say you're in good shape both of you. Simon, you have treatment options due to a lower but still troublesome PSA, and Rory, your MRI and DRE haven't yet yielded any definitive cancer evidence or spread. I realise we all have more of a journey ahead of us, and I wish you both all the very best. This will inevitably be a stressful and worrying time.

So, that's me. Up at the crack of dawn and back to the hospital.

Stay in touch, keep fighting and hoping.

Matthew

Sorry to hear about your diagnosis Matthew. Thinking of you and your family tonight.  

Will you also have an MRI scan?  I was told that this was the main scan with CT as an extra scan.  Maybe they are interchangeable.  Hopefully the rest of your scans are clear and you will have a solid treatment plan that you are happy with.  

Thanks for the information about the biopsy.  I will call my hospital tomorrow to see if there is any chance to bring it forward as well as to get the results of my CT scan.

Rory

Thanks Rory.

The staff said that they'd immediately run with an emergency biopsy appointment and miss out the MRI element that usually precedes the biopsy option. I understand the upcoming MRI and/or CT bone scan will try to find any spread, these test results will determine whether it's stage 3 or 4 they explained. Not sure how exactly this will play out but I will ask the question tomorrow and feedback if that's helpful.

Wishing you (and everyone reading this) the best possible outcomes.

What a fortnight this has been! 

Matthew

Matthew,

I hope your biopsy etc goes as well as can be hoped. I'm now in for radical prostatectomy tommorrow as it appears, though low grade, i can get the contained cancer removed. Still alarming to have to go through it and all the consequential effects but at least it's treatable. 

I wish you and others here all the best and good luck

Simon

Best wishes for tomorrow

Hoping the surgery goes very well Simon.

My biopsy apppintment happened yesterday and I recieved amazing service. Remarkable people. It wasn't as painful or undignified as I feared. If it helps, I can share more about the details [@Jellies]‍ - let me know.

Today I am shoehorned into a "nuclear" bone scan appointemnt, just preparing to leave for the hospital now. 

I believe that will be it for me until 8 March at 9am for the big reveal. Just hoping and praying for stage 3 diagnosis (or better) and a managable Gleason score. The PSA 61 is already comparatively rotten and the DRE findings worryingly abnormal, so bracing myself and my family for the worst and hoping for the best.

Hope you're able to bring your biopsy appointment forward Rory?

It's odd isnt it, we havent ever met, but somehow I find myself thinking about your sitiuations and hoping you are being looked after.

Thanks for staying in touch.

Take care,

Matthew

Hi [@Jellies]‍ Rory,

We are in safe hands it seems...hope they don't find anything too dramatic but I agree with you, it wouldn't be a massive shock were they to find something that shouldn’t be there sadly.

My bone scan was rather more involved than I expected yesterday. After the first 20 min scan on it seems the more standard 2D machine, the technician said "Slight change of plan..." and went to to explain that the doctors are asking I get more detailed images of my chest and pelvis. I had noted during the first scan that the only time I heard frantic typing was when they hit both of those areas. 

Into a diffrent scanning room with the latest 3D CT machine I go, they explain what they wanted to do but not why, so I asked if this was being driven by earlier findings or was it procedural and the poor technician did his best to dodge that impossilbe question. So, staff kept coming out of their protective two-way mirrorred office to guide the process.

I would love for you (and Simon) to keep sharing your experiences.

Wishing sincerely you much luck and fortitude!

Matthew