Hello to all (recently diagnosed)

Hello Hutch,

Sorry you find yourself in this situation. If you don't mind, would you share some details of your journey so far? 

The dates and results of your previous PSA tests and digital exams. Any scans prior to December?

The specific results of your biopsy cores.(total cores, number of positive cores, grade and percent of cancer in positive cores).

Also can you explain what it meant to be on the watch list?  It seems your PSA was tested within the last year. What was the date and result?

This is information can help us help you. 

Two things to start with.

The situation is what it is and you will need to deal with it as you see fit.

Secondly the bad luck of being diagnosed after a progression that you are convinced (by the sound of it) that it should not have happened. The two ways of dealing with this is a PALS complaint asap, or a realistic review and a reluctant but necessary acceptance of the new you with cancer that will be treated (if you want to).

You have to face up to the facts that no system is perfect and even if you go along the PALS complaint path the time scale is quite small and maybe hard to distinguish what’s what.

whatever you do is your decision a out the past, but it’s the future you should be concentrating on. We are here to help you which all these issues and future issues to come. We can support and inform you about complains and how to do them. We are here with tissues when you need to cry (which you will) and we will hold you up when you feel week and down.

You are at the start of an adventure you didn’t want to be on but here you are. If you can accept it and get your brain in gear to beat the cancer (and the system) then call on us to help you.

You will have a million questions and maybe don’t want to figure it out just now but we are here when you’re ready with a need for help.

Good luck

As above. Difficult to appreciate the whole picture. If you want to share. Then information like previous PSA results, have you had an mri or biopsy previously that the results put you on a watch list. Is the list you are referring to “active surveillance”?

The helpline provided here can be a good opening opportunity to  clarify your situation and hopefully clear your thoughts. 

Hi Hutch 

I am a bit puzzled , if you were given a cancer diagnosis last month then what was the watch list you were on?

When did the journey start , what has happened to PSA  since the start, what size tumour  does Mri show , presume only 1 Mri?

best wishes

Steve

Hi Hatch,

I would say welcome to the community that no body wants to be part off but... this community is a god send and it will helps you great deal in the next few weeks. Do not hesitate to put any questions or any feeling you have, we have all been there and people here share their most intimate emotions and feeling. You can be reassured that you will not be judged.

To the point: The diagnosis weeks and what follow immediate after is the most difficult period. When you will meet your oncologist and a plan will be put in place, you will take control of your life and feel much better. Prostate cancer, even advanced, is not a life sentence. My husband diagnosed in November 2023 and the weeks that follow were dark and horror but few months after diagnosis life carry on almost as normal with the HT and RT treatment. We both were very angry to start with but soon after diagnosis in early 2024 adopted the attitude of we are living on and fighting the bastard. Jacob my husband is in advance cancer diagnosis, see our profile. His life is almost the same that it was before diagnosis. We are looking forward to a trip of a life time to Alaska and the Rockies in late spring meeting my brother over there. I am not active on the site so much as I used to be because we are not any more in cancer frame of mind. I only came on the site today to ask for a good travel insurance and then I saw your post and I felt that I should write few words because I do remember how the first few months feel. 

Please Hatch be reassured that you will feel much better after seeing the oncologist. Stay on this community, people are amazing here.

Lots of love

Dafna

Early last year my prostate was inflamed. I was prescribed Tamsulosin. It made things better. However I was supposed to have a biopsy when my prostate improved. This did not happen (biopsy) until dec 18th 2025. The Doctor could offer no explanation as to why I was taken off the watchlist. Hence my current situation. I have added the results mri, psa, etc above.

Ok Hutch, thanks for explaining.

Still puzzling, If recent MRI shows little change to last year then why was treatment not offered at the beginning of last year.

A 12mm lesion would normally indicate treatment not far off.

Anyway I understand you being unhappy about the situation.

Some good news though, still potentially curable but need to push for some HT to stop in its tracks before radiotherapy starts.

Best wishes 

Steve 

Hi again Hutch,

Agree it is disappointing that the attention you received in December didn't occur in June or July. There is no way to know if those months actually made any difference. I understand your frustration.

As above, it is time to move on to successful treatment. Your 3+4 with 30% 4 is favorable. So is the non cribform. Also, PSA not too high.

Seminal vesicle involvement(SVi) is the concern. Don't pay attention to doctor google when it comes to SVI.  Five years ago it was for the most part, treatable but not curable. With modern advances,  this is not the case. I have been more of a surgery fan than most on this site, but not in your case. With SVI it is more likely that surgery will not remove all of the cancer. But it could still be within the range of prostate and pelvic radiation. A period of ADT should also be done. Triplet therapy should also be in the discussion. 

Stay positive. A potentially curative pathway is out there.

In your case, I would certainly be looking at brachytherapy boost (whole pelvis, due to the T3b).  Take a look at my bio.   AW

Thanks for the edit with all the extra information. 

Reading minimal change from MRI in December 2024, but the new results indicated seminal vesicles affected is a bit alarming. Seems that would be a large charge. This cancer is generally slow to change. If you were T3 or potentially T3 a year ago and were not immediately offered treatment seems duty of candour is the least you would expect. 

On the other hand if the charges were rapid makes AS look less appealing. I can understand why some are not in favour.