Salvage Radiotherapy

Hi Goggie , sorry to hear you have ended up like this.  It is well outside my competence to offer any help from my experience and am sure others will be along shortly to offer advice.

My first thought is to make contact with the radiologist in charge of your RT if you have their details.  Secondly, do you have a Cancer Nurse contact?  If so, try them.  It makes no sense for the oncologist to put you on a treatment with ‘likely to fail’ and shocking that he isn’t able to communicate.  There are experts available through MacMillan and again someone will be along to point you in their direction.

Best wishes, David

Hello Christine.

I think the first thing you need to do is talk to the radiology team. Radiotherapy can cause 'bruising' which can narrow the urethra - it is important to make sure that urine is still passing and there are drugs which can help. Very often things resolve by themselves once radiotherapy has been completed and the swelling goes down. Secondly I would phone the Macmillan help line so that you can both talk to someone. All forms of treatment have possible side effects and don't forget that most people ask for help when they have them, you don't normally hear when everything is running smoothly so this can bias the information you will find on line. The side effects of radiotherapy as far as incontinence are concerned is usually considered to be less likely than with the prostatectomy. As Peter has already had 8 sessions of radiotherapy I presume this is EBRT which is the lower dose treatment at each session which is gentler on the system each time compared to something like SBRT, but also the modern machines now are extremely accurate in delivering the dose to the exact area needed and causing less collateral damage to the surrounding organs. Long term, if Peter has problems caused by the stricture then there are usually surgical interventions which can deal with this.

Please come back and let us know how you get on and if you have any questions.

Hello Christine (Goggie )

Welcome back - but so sorry to see you here under the circumstances. I am in total shock at Peter's oncologist. I agree with David2017 here.

1 - Speak to the radiologists about your concerns - to continue - to postpone or stop.

2 - You need a review of Peter's case from another oncologist - check with your GP if they have any ideas who you can turn to - or indeed check with your own team if there is another oncologist available.

3 - You say he was put on Hormone Therapy - is he still on this? - It sounds like it should be continued.

4 - Do you want me to give you the link for the free BUPA counselling that Macmillan's offer in these circumstances?

I hope this helps as a starter - I am sure there will be others offering advice - please come back to me if I can do anything else for you.

Best wishes - Brian.

Any side effects that come up during radiotherapy must be brought to the attention of the radiotherapist straight away as they can either prescribe medication to help or refer to specialist. I would try calling them as soon as possible. You should also be able to contact a Cancer Nurse or Key worker allocated to him by the hospital or a Macmillan Nurse at the Hospital. I very rarely managed to contact my key worker but did manage to contact my consultant's secretary so in the meantime  try calling the Prostate Cancer UK Specialist nurses on their free phone number 0800 074 8383.  They have been invaluable to my wife and I during my cancer journey.  The lines are open Mon, Tues, Wed and Fri 9am - 6pm and on Wednesdays 10am - 8pm  they will be able to advise you about what can be done and the best way to expedite any treatment or medication.

As your oncologist is being so un communicative I would also ask to see another oncologist too.  You would probably be best asking your GP or radiotherapy department to refer him.

All the very best to you both.

Hi Goggie and sorry to hear about your OH

My suggestion is , with a non communicative oncologist and then saying that salvage RT prob will not work is to find some one else because u need to find out if the salvage RT has a any chance of working before going through  with it.

You could either ask  your GP to refer you somewhere else or u could just go privately for a second opinion although I think that Brian has mentioned a second opinion with Bupa which sounds quite good.

Just my opinion but I wouldn't stay where u are right now.

Best wishes anyway and do let us know how it goes

Steve

Hi thank you so much once again yes please could you send us the contact for The Bupa councillor at Macmillans please 

It is so difficult and we do feel out on a limb as to where to turn . They are so hard  to get a hold of .. the Macmillon nurses are spread very thin and a lot of the time never get back —  thank you Christine 

Thank you so much for your reply as you said always lots of help on this incredible forum 

best wishes Christine 

Dear Allwayshope 

thank you for such a in-depth reply 

I think he checked and he has not been on that lower dose of treatment 

• However we will try and speak to to MacMillian radiotherapy nurse she is lovely but covering to major hospitals and run off her feet . I do hear what you say though 

At the moment I am just trying to get him to go today best wishes 

Hello and thank you for your helpful replyyes MacMillian are a great help if you can get a response and they are offen unwilling to commit 

I desperately want my husband to get a second opinion from an other oncologist 

I dread seeing the one we have ! 
I think that’s half the problem… and when ask him anything he’s abrupt negative or non commital 

we will look into this thank you again 

Exactly Steve 

Until we actually are able to find this out and have a clear picture I feel my husband is going to worry about everything and anything that might make his life compromised because of his stricture post surgery ! To not have a cure and then be left with a bag is first and foremost in his mind …. 
best wishes Christine