Hello all. OH diagnosed Gl9( apparently upgraded by re examination of histology whilst awaiting surgery). Surgery was refused by UCLH which is where men in north wales are sent after a PSMA showed a suspicious area on T5. He was told oligometastatic PC as still contained in prostate - single suspicious spread to spine. 6 sessions of docataxel later and CT showed nothing- not even any scarring which would apparently be expected post chemo.
Starting RT next week which is 20 sessions doing prostate and lymph nodes even though currently clear. Have been told this is the same as would be for curative intent but been told not curative because of the Gleason 9. Having read the notes it states some cells mimicking the higher grade. Im so scared - it’s been a rollercoaster- first promised surgery & curable now not. All seems to be based on suspicions and mimics. To top it all he was denied triplet therapy whilst on chemo with lots of fudging.
lost hope and trust and scared of the HT stopping and loosing him.
many advice and experiences would be appreciated- sorry for the ramble Thank you x
Hello Hanandy - Welcome to the club - we are a decent bunch!
I am so sorry to read of your other half's PC journey so far, it all appears to be as if no one in either Oncology or Urology has any idea where they are up to here. I must confess I had to look up "oligometastatic". So from what you have said:
* Surgery was out because they thought it had spread.
* Chemo was given because they thought it had spread to the spine but there is no evidence of it being there.
* He's already on HT and is about to start RT to the Prostate and Lymph nodes but told not curative.
I can only go off my personal journey here if it's any help - I am a Gleason 9 T3a N0 M0. At diagnosis there was a thought that it had gone walkabout in Urology but by the time I was passed onto Oncology they thought it hadn't but at RT as the oncologist said - we will zap your lymph nodes to make sure - with a view to it being curative!
You have every right to worry and ramble - it looks like the treatment up to now has been poor - lets hope the RT combined with the HT will sort the little blighters out as Joe said above
, I’m a Gleason 9/10 diagnosed more than seven years ago, still here fighting the best I can, so if I can battle that long I’m sure he will, not saying it’s an easy journey,
Stick with us - keep us posted during his RT treatment, and we are all here for you - ask away, anything, however trivial it may be - I am sure he's a fighter and between us we can win this battle.
Best wishes - Brian.
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hello Hanandy and welcome!
you have certainly been on a rollercoaster ride with lots of hopes raised and then dashed along the way. As Brian says’ a bit of a ramble is well justified.
we were told that my husband is T3 a nO M 0 Gleason 4+3 = 7. It took me ages to get his scan and biopsy results! A state secret! Once I got my hands on them we could see that the initial T3a as we had understood it was somewhat suspect! T3a defines the cancer as locally advanced. We were told that the MRI showed the cancer bulging against the capsul/wall ( they seemed to use the terminology interchangeably) and so they couldn’t be sure whether the cancer was still contained in the prostate or had broken through.
the biopsy picked up no cancer cells outside the prostate so I queried why he was T3a . They told us that just because the biopsy didn’t find any cancer cells it didn’t mean there were not any!
I also queried how they arrived at Gleason 4+3 given the report showed a higher number of the lesser aggressive cells. They completely confused us with their answer and we are still unclear!
however, what they did tell us was that if there are any doubts they err on the side of caution and treat as the higher grade. I am wondering if this is influencing the clinical decisions being made for your husband?
even so, I worry that they didn’t do the more precise scans - just bone and mri. Could they have missed something?!
We all look on medicine made on the hard fact of science and evidence based. I’m not so sure anymore. My husband finished his RT in March this year. From last November he has been on HT and told he will need to take this for 2-3years, then 6 months, then 18 months and, at his last review, 12 months. I asked what evidence supports the length of time and was told ‘none’! there is evidence for low risk and evidence for high risk but nothing for intermediate risk.
I know this doesn’t answer your post but hopefully you won’t feel so alone if you know you are not the only ones being given mixed and confusing messages by the medics!
You have different options in England to try to get some clarity etc. you can obviously ask the consultant for an explanation at your next appointment. You can write a letter to him/ her. You can contact the consultants secretary. You can ask your GP to get clarification. You can also contact your hospital trust Patient Advice and Liaison service ( PALS - sometimes called PILS patient information and liaison service).
I hope this helps a bit, even if not much! Us wives seem to have to bear a lot of anxiety on this journey but, here, you are among many wives walking this rocky path 
I hope all goes well for you and your husband!
Hi Hanandy,
Welcome to the place that I trawl through in the middle of the night looking for answers. It’s a great place full of advice and hope. You are not rambling at all, we’ve all been where you are and completely understand your panic. I think Joes post is great as it shows there’s a future and there will be a long one hopefully. When my partner had his diagnosis I cried nonstop for a day, I thought my OH would be dead within the year. I knew nothing then, but we have come on a journey this last year that has shown me that there is hope and a future. The treatment available is excellent and men live a lot longer with this cancer than they would have lived 10 years ago. My OH has just had extensive RT in his entire pelvic area and up the sides of his torso (metastatic spread is not visible but they know it’s there) so that was to cover the immediate area. We had a consultation last week and was told that there is no expectation of the cancer coming back and it should be gone. He is now having Ht to hold back anything else in the body that may fancy its chances and that will hopefully keep everything under control for a number of years. Read my bio for his treatment as there maybe something there that you can look into as I feel there are similarities, but remember everyone’s cancer and journey will be different.
He is now on a steady path and with his current meds he’s decided to add RT-2 . This is Retail Therapy at a level he has never been allowed to do before, instead of a credit card he keeps producing the C card on me in a bid to buy every man toy ever made, do watch out for that one.
Best wishes to you both and keep us all updated.
L
Hahaha! I know! “I think I’ll have as new car, you know something that I’ve always wanted. I’m not talking about a family car here… I have got cancer.”
Serious man toy stuff . Need to be careful I say you don’t want to rev up that Testosterone too much. 
