Questions to ask the Oncologist

Thanks Scampidoodle, I will get on to Macmillan about the exercise trial, it sounds very interesting and a good thing to focus on.  We fell down a hole for the first few weeks, but I have found so many positive people on this site.  We will beat this.

• Thanks Graham.  We haven't had a great deal of luck with our cancer care coordinator, overworked I suspect, and probably underfunded.  She was super when we talked to her face to face, but haven't managed to track her down since.

GP's are notoriously bad on knowing side effects and interactions with other medications and conditions the best person to ask is a pharmacist or your consultant.  Luckily I noticed before I started taking it that one of the medications I was prescribed some time ago shouldn't be prescribed for someone with glaucoma - which I have, so asked the Doc to change it.  I was so shocked that now I always ask the pharmacist when anything new is prescribed.

I only managed to contact my nurse key worker once too and that is going back 6 years now so things must be worse after covid and backlog problems.  I contacted the specialist nurses on the Prostate Cancer UK helpline about a dozen times - they were absolutely brilliant to both my wife and I.  You can either phone or email them have a look at their website the free telephone helpline number is 0800 074 8383 they are open every day 9am to 6pm and on Wednesdays 10am to 8pm.  I also went to my nearest Maggie's Centre too and joined "The Walnut Club" of men at various stages of Prostate Cancer Treatment of post Cancer Treatment.  That was absolutely marvellous the wives and partners were also invited along but we split up and the " WAGS" as we called them went off and had their own discussions with one of the charities full timers and ate all the cakes brought in and we had more detailed discussions with various health professionals from physio's to radiographers, uroligsts and oncologists.  Unfortunately, the club has not been meeting during covid but the Maggie's centre is always open for help and advice on all aspects of cancer - including benefits advisors etc.  Great to go there for a cuppa and a natter and even help in their garden and take home the wonderful fresh produce.  If there isn't a Maggie's near you there may be other cancer charities that offer similar support.  I honestly think my wife liked going there more than I did.

The HT can either be the choice of the Ocnologist or your local GP surgery - for me it was the GP and I was on Bicalutamide for 2 weeks and then  on 3 monthly Prostrap injections - the first injection given would usually be a month and then if I got on well would have moved to 3 months but they messed up my appointment and thought I had already had a one month one.  I was determined to get the injection and start the treatment proper so went for the 3 month injection.  If the side effects are too much to handle it may be a good idea to ask for a change of HT if that is possible.  I didn't have breathlessness but did have fatigue but even so carried on exercising all the way through HT and my months RT which I think helped with avoiding excess weight gain - only putting on about half a stone through out and not getting emotional problems and minimal muscle wastage.  Also managed with the fatigue with just taking a nap after lunch - oh and my wife says I also fell asleep in front of the TV at about 8.30 but I put that down to the boring programmes she was watching .  I have to say that the weight I did put on was around the midriff - which again seems quite normal.  Within a few months of stopping HT things reverted back including the extra hair that had started to grow back on my bald patch - LOL. 

You may find it a good idea to look on the Prostate Cancer UK website and look at their collection of pamphlets called Prostate Cancer Toolkit which give more than enough information on what to expect at diagnoisis and how things may progress.  You can view them on line.  There is also a Prostate Cancer Uk helpline with specialist Prostate Cancer nurses to answer any questions you may have.  They were invaluable to my wife and I as I only once got to contact my nurse keyworker at the hospital she was so busy and now with all the effects and backlogs caused by Covid I doubt it has got any better.  The telephone number is 0800 074 8383 and they are open Mon, Tue,thur and Fri 9am - 6pm and Wednesdays from 10 am - 8pm.

During my month of RT I had one night about 2 weeks in of having to get up to pee about 30 times and no bowel problems at all - which, as my tumour was seen to be pressing onto the rectum - the reason removal was not considered a good idea, was amazing as both the oncologist, radiologist and I expected that.  Others I spoke to in the waiting room had varying degrees of bowel and bladder problems but were medicated straight away and effects were minimal.  The thing is to tell the radiologists immediately if anything changes and medication will be given..  Remember not everyone gets the side effects mentioned and those who do get them to varying degrees.  There is nearly always a medication that can be given for the side effects.

Thanks Freefaller that was very helpful.  We have had our telephone conversation with the oncologist today.  My husband will start his RT in March.  We asked about the space oar to prevent damage to the rectum, which we have read about on here but we're told this was not authorised by NICE!  Disappointing.  The side effects sound so distressing, we are feeling a little bit shell shocked.

I should double check that, I am sure that I read some months ago that space oar was authorized. Some hospitals r using it.

But even without it unless he has existing bowel/urinary issues sure he will be ok.

Best wishes

Steve

Maybe you should find a hospital that offers the fiducial markers (3 gold seeds inserted into the prostate to target the RT)  that I had.  I was a little too early for spaceoar.  I am certain that they saved me from the worst side effects as my tumour was pushing onto the rectum  I got a private consultation at a hospital that offered this so that I could have this and then transferred to this hospital ON the NHS - it was half an hour further away than our local cancer hospital but that was already 2 hours away so we knew we were going to have to stay over for the week during treatment.  Not all hospitals offer the same things but you can transfer to another hospital to get the treatment you want.

SPACEOAR HYDROGEL  is authorised by NICE and from what I can gather in my quick research just now has been since about September 2017.  In 2019 there was special funding given to ensure more widespread use.  So I would definitely question what your oncologist has told you.  See the authorisation here   www.nice.org.uk/guidance/IPG590

Thanks for that Freefaller.  I think that 2019 authorisation might have been superceded.  I found something online that said only 1400were authorised in 2021.  It is difficult to find out what is current.  When we asked the consultant on the phone he was quite curt and cut off that line of questioning.  We mentioned the fiducial markers but apparently cone beams are used at every session to exactly target the RT.  

Reason he may have been curt possibly because they don't do space oar at that particular hospital, u may have to shop around and change hospitals.

If there r no major issues with bowel or bladder , currently, then should be ok without space oar.

Steve