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How long can you wait?

User
Posted 22 Apr 2019 at 22:44

Hello, my husband has recently been diagnosed with PC T3a Gleason 3+4. He has the choice of surgery or radiotherapy and both equally effective. He has been counselled for surgery and awaits counselling for radiotherapy, but this appointment isn’t for 2 months. He’s erring towards surgery from the info we have been given but has been advised by nurse to wait for counselling before making a decision. She says it waiting won’t matter for radiotherapy, but as the cancer is already outside the gland is waiting foolish?

User
Posted 23 Apr 2019 at 15:05
Never assume the NHS being slow is a good sign!! Keep on nagging them
User
Posted 08 May 2019 at 16:15
Thank you for all your replies. My husband has chosen not to wait as the radiotherapy app could not be moved. His surgery is Monday 13th May.
User
Posted 15 May 2019 at 16:02

Great news that’s one thing out the way. Don’t over do it in the first week or two and I’m speaking from experience haha. The 6 weeks will soon pass and hopefully start on the road to recovery. Look forward to the update. 

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User
Posted 23 Apr 2019 at 02:09

Has he started Hormone Therapy (HT)?
If so, that is the beginning of treatment and will stop the cancer growing for now, and give time to think through treatment options.
It is necessary to be on HT for at least 3 months before radiotherapy (RT) anyway (makes the RT significantly more effective), although it's not normally necessary for surgery (RP).


With a T3a, I thought RT is usually considered a better long term bet, but there may be reasons your case is different. Sometimes RT (lower dose) is done after RP as a multimode procedure, but then you have to put up with both sets of side effects, in which case RT alone should be considered.


I wouldn't want to sit around for 2 months with no treatment, although PC is usually slow moving and you would probably be OK, but you should find out about the RT treatment, as it might be the more suited one.

Edited by member 23 Apr 2019 at 03:36  | Reason: Not specified

User
Posted 23 Apr 2019 at 08:13
Thanks for your reply, it would be so much easier if they had simply said “in your case the best treatment would be.....”
All the best with yours. From your profile you have been put through the mill of uncertainty too!
User
Posted 23 Apr 2019 at 08:58
If the cancer is already escaped from the gland, there should have been some clear information from the appointment about surgery, including how likely it is to work. Did you attend that meeting with him? Are they proposing to remove the prostate and all nerve bundles? Did they explain the implications of not having the nerves spared? Did they suggest having the surgery and then waiting to see if it works or are they proposing surgery followed by radiotherapy regardless?

I can see why they have advised him to wait for an oncology appointment - RT may be the better option in your case - but I would be anxious about a 2 month delay if the cancer is already outside the gland. As above, ask the nurse whether he can have hormones in the meantime perhaps?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Apr 2019 at 10:07
It is quite often the case that there is 'no best treatment' for an individual because there are pros and cons for each treatment and it's not just a question of which treatment is likely to be more effective but there is the matter of side affects and other considerations. In order that a better understanding of possibilities, potential advantages and risks be gained, I recommend you download or obtain a hard copy of the 'Toolkit' from the publications section of this charity. I also agree with asking about the possibility of starting HT as a holding regime (it also helps reduce the size of tumours if you do decide to go the HT route. Also, there is often a few weeks wait for surgery, so why not see if an appointment for surgery could be booked now for surgery after you have seen an oncologist. This could then be cancelled if if it is decided to elect for RT. An earlier treatment resolution might be possible if an appointment was arranged to see an oncologist privately. He or she would need the full histology and scans which can be obtained from the present hospital.

With a T3A and Gleason 3+4, which was also my diagnosis, there is a quite a possibility that it will not be possible to remove all the cancer surgically and that RT will be a recommended follow up.
Barry
User
Posted 23 Apr 2019 at 10:11
Thank you for your reply. Yes he had counselling with the surgeon and he was very optimistic about the outcome. The nerves are possibly to be lost on one side though the other side can be spared. He also suggested the possibility of needing RT in the future. We thought the appointments for counselling would be more or less together but that’s not the case and what is so frustrating. There has been no mention of hormone treatment, but you do make a valid point about starting it now regardless. Will speak to the nurse. Perhaps it’s a good sign the medics are in no hurry just us wanting it sorted!
User
Posted 23 Apr 2019 at 15:05
Never assume the NHS being slow is a good sign!! Keep on nagging them
User
Posted 23 Apr 2019 at 17:54
I agree with francij1 keep on at them, I was told I’d have my surgery in August last year and heard nothing for 6 weeks, I to thought no news is good news. When I finally rang them they said I never showed for an appointment ( yeah right of course I never) they had me in within 10 days when I politely said I think you’ve made a mistake
Elisa ring them tomorrow and the next day until you get answers
User
Posted 23 Apr 2019 at 18:03
There is no such thing as no need to hurry when you have a T3 diagnosis. At least in your case you know that you haven't just been lost in the system - the nurse has told you there will be a delay so I am not sure what benefit there is to phoning them except to let them know that you would be happy to take a short notice appointment if someone else cancels.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 May 2019 at 16:15
Thank you for all your replies. My husband has chosen not to wait as the radiotherapy app could not be moved. His surgery is Monday 13th May.
User
Posted 08 May 2019 at 21:47

The waiting for results/appointments is terrible, I really wish this area could be sped up.  The anxiety of not knowing is something very hard to live with.  For what it's worth my husband was thought to be T3a after MRI showed the tumour very close to the capsule.  He went ahead with RP, he never wanted RT, and I am so happy to say he's making a very good recovery.  The pathology report came back with a downgrading from T3a to T2c, and clear margins.  Until they actually get the prostate out they can't know for definite what the outcome will be.  


I wish you lots of luck for Monday, you will start to feel a bit more normal once Monday is out of the way.  Let us know how it goes.


 

User
Posted 09 May 2019 at 17:59

good luck with the operation and hopefully they down grade the cancer as they did with mine. the first week after the op is ok as you have the catheter in, take it easy but do try to walk around it helps with the recovery. my problems started when the catheter came out and I had no control at all for 3 weeks then I started to improve rapidly and have full control ,my op was in June 2018,so if your in the same situation don't worry to much just have plenty pads handy and a good sense of humour. hopefully they can spare your nerves but if not it is a major life change and harder to cope with. wish you luck in the future and keep us all informed of your progress it will help you a lot.


eddy.

User
Posted 09 May 2019 at 18:47
Thank you for good wishes. I will pass them on to my nervous husband.
User
Posted 15 May 2019 at 11:44
Husband had surgery Monday, surgeon said it went well and he was home Tuesday. He’s quite tired but is up and about, showered etc. Will go out for a walk when district nurse has called. Thanks again for encouraging comments. Will post again after the 6 week consultation.
User
Posted 15 May 2019 at 16:02

Great news that’s one thing out the way. Don’t over do it in the first week or two and I’m speaking from experience haha. The 6 weeks will soon pass and hopefully start on the road to recovery. Look forward to the update. 

 
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