I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Locally Advanced Grade 4

User
Posted 19 Feb 2019 at 16:07

My husband (59 yrs old) was diagnosed with an unusual aggressive advanced Grade 4 prostate cancer and was labelled  "locally advanced". His Gleeson score is 8. His cancer apparently stems from the prostate in "scattered seed form" and it grew through the lining into a 2cm tumour in his bladder which was removed with a TURBT procedure. He then had to have a radioactive bone scan to see if it had spread to his bones and thankfully it hasn't spread. He had no symptoms apart from blood in his urine twice in one day and went straight to the doctors.  

He even had a prostate test at the end of last year which was ok!!?? How can this be?

His planned treatment was to have Hormone Therapy and Radiotherapy.  He's on the tablets since around 23/1 and had one injection which is to last a month and we are waiting for the Radiotherapy to start at the local Christies Hospital.

It's 6 weeks now since he had his TURBT procedure and we just found out today that the hospital hadn't forwarded the referral letter for the Radiotherapy so we've lost 2 weeks already! 

I just wondered if anyone else is in the same boat and can shed light as to how long we wait for the radiotherapy to start and what to expect. Also the words "unusual, advanced, aggressive grade 4" label really unsettles me and the consultant said my husband's life expectancy could be 1-10 years.

We've been told he will never be cured but it could be contained.

Edited by moderator 19 Feb 2019 at 16:11  | Reason: To correct text formatting issue

User
Posted 19 Feb 2019 at 17:27
Was it adenocarcinoma or some other form of prostate cancer??
User
Posted 19 Feb 2019 at 19:43

Sorry to read you're in this situation. Did they give you more information on the type of cancer? If it’s regarded as locally advanced the treatment path seems the proper one.

Waiting a little longer for radiotherapy isn't a bad thing. With the hormone therapy started the cancer will be weakened through starvation of testosterone which it uses as a fuel.

Evidence suggests at least three months,  preferably nearer 6 months of HT before radiotherapy helps it work better.

You're in the right place for help and advice. It also might also be worth a chat with the specialist nurses on 0800 074 8383.

Ido4 

 

Ido4

User
Posted 19 Feb 2019 at 20:24
You haven't lost two weeks. As Ido says, the normal process is to start hormone tablets for 4 weeks, then move to injections that are given either monthly or 3 monthly. The radiotherapy starts either 3 or 6 months after the hormone treatment was started - the idea is for the hormones to starve the tumour so that it shrinks and is easier to target.

There are some rare types of prostate cancer that do not produce any PSA so blood tests all come back normal - these types are notoriously difficult to diagnose before they have spread so while it is awful to know that your partner has cancer, he is rather fortunate that this one was identified before it had gone to his bones or elsewhere.

If you have received a copy of the diagnosis letter from the urologist / oncologist to the GP it should say somewhere which type he has been diagnosed with. It is unlikely to be small cell or large cell PCa as he has been put on hormones, but your letter may say something like ductal cell carcinoma? If you haven't received a copy of the diagnosis letter, your OH can request one from the GP practice.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
©2019 Prostate Cancer UK