Where do I start ?

Just an update really as feeling pretty low after my encounter with a GP, I saw my consultant two weeks ago for the follow up Histology and reports after robotic prostatectomy at the end of January, amongst other information, he said I will write to your GP and get a prescription sorted for low dose challis as this was in his opinion the best way to go to start the ED treatment ?

So I have just been to the GP one of many in a large surgery with a GP I haven't seen before, and started with saying I was diagnosed with prostate cancer just before Christmas which was followed by surgery, I have recently seen the consultant who has written to you asking that you prescribe low dose ciallis, and was going to then update how I was physically and emotionally but he laughed, turned away and started typing and said these consultants don't live in the real world, they don't realise it costs £54 for X number of tablets and if we dish these out willy nilly there will be no money left for this robotic surgery !

I tried to explain that the consultants view was challis was his preferred low dose treatment, however, the GP was dismissive and said in that case I suggest you go back to the consultant and ask him to prescribe it as I'm not, he then said he will only prescribe Sildenafil, followed by "is there anything else".

I'm just to weary to battle with yet another uncaring, indifferent alleged health professional, I just left and told him he can donate the money he has just saved the NHS to a worthwhile charity such as prostatecanceruk and while he does it, to read up on the disease ! 45 qualifying years of NI contributions come to nothing. Sorry for the rant, but so angry and so fed up with this beauracracy.

Hi HC,

I can't say I'm too surprised regarding refusal of your request for low dose daily Cialis. I am surprised at your GP's attitude though...

My GP refused to prescribe it for me also...... However he did prescribe me 8 x Cialis 20 mg per month which I understand is more than the current NICE recommended allowance.

According to my GP there is no concrete evidence that low dose Cialis is of benefit......even though my consultant was happy to prescribe me a months supply initially....

I don't take either now as I find muse is far more effective for me at my stage of the recovery process.

Luther

Edited by member 01 Apr 2016 at 10:47  | Reason: Not specified

Luther, thanks, I hadn't even thought about the ED side as I am still dealing with the recovery and struggling very hard with fatigue which I really can not get to grips with, fatigue or just lethargic.

I haven't researched or even looked at what's available or the norm for the ED side, everything was on hold till a few weeks ago waiting until I got the histology or pathology results from the consultant. I purely went on the advice of the consultant who explained why he wanted me to start with a pump and the Ciallis on a low dose, therefore when he said he would write to the GP and book an appointment I expected his advice to be followed, not overruled by an accountant with a stethoscope and poor people skills. I wasn't even offered a pump or any advice, he was purely interested in cost and no discussion about my health despite me explaining the fatigue etc, just is there anything else as he turned his back and started typing.

Happychappy, don't take it personally. This is the impact of government changes - GPs have to fund the prescriptions they dish out. We had the same issue to begin with which is why a referral to your local ED nurse or andrology clinic would be a good next step. ED nurses are usually prescribing practitioners and once you get a prescription from them it is easier to get repeats from the GP practice. Seems to me that the GPs have to do what the ED clinic advises more than they have to do what the hospital consultant says. Crazy but once you know that, it feels less like a personal attack.

So may be easiest to ask the consultant next week whether HE can refer you to ED nurse or write to the GP practice requesting that they make that referral.

There is absolutely no excuse for his rudeness - perhaps write a letter to the practice manager saying pretty much what you have said to us here and then make sure that you see a different doctor in the practice in future.

PS if you don't get anywhere, we have a pump, pre-loved but clean and sterile, that we could send to you.

It seems that there is no consistency at all and I feel for your situation. Your gps attitude is inexcusable.

I have been lucky or my postcode is the lucky one, my consultant wrote me a private prescription for 16 x 20mg cialis ( one every three days) but suggested I speak to my gp about getting it on the nhs and without hesitation the Gp wrote the prescription as he said there was evidence that it could help. He also said that if I needed it longer term then that wouldn't be a problem either. Keep shouting and I'm quite sure you will be heard.

Another point slightly left field but found out that all cancer patients can get free prescriptions (whether cancer related or not) just need to get a fp92a form from your

Gp.

Best wishes

AL

Walnut, I think it is the other way round. 2.5mg / 5mg Cialis is produced and licensed in England for rehabilitative purpose and approved by NICE. There is significant evidence (plenty of posts on here in the past and you should be able to find all the links through the search function) and this was provided to NICE at the time of the application which showed that men are more likely to recover EF if they take daily dose Cialis. The 10mg / 20mg dose is licensed for 'event' purposes but limited by NICE to 4 tablets per month.

Some CCGs have decided not to agree the prescribing of daily dose cialis, or they have agreed it but the local GP practice manager has decided that it is not a priority in their budget. Some men have to settle for the larger 'event' dose and then cut the tablets up. The research showed that viagra does not produce the same rehabilitative effect as cialis.

A note of caution to other readers: At the very start of our situation, the GP refused to prescribe Viagra (for an event) alongside daily dose Cialis so we asked about a private prescription. He explained that to opt for private scripts, John would have to waive his right to ANY ED treatment on the NHS. On balance, John decided it was better to stick within the NHS system and we were fortunate that the ED nurse was fantastic (and scary - GP gave in to her immediately).

Most consultants are not permitted to issue regular prescriptions to patients - they must defer to the GP for ongoing meds.

This made me laugh and then I thought of all those poor souls who came along after you and are now destined to forever settle for once-a-week sex :-( 

Lyn/Luther

Thank you so much for your support and rubbing it in.

Only joking, I am not going to feel to guilty our local boots only supplies one other person in our area and my GP had never prescribed it to anyone before me.

On a serious note would happychappy be better off on sildeafil rather than nothing, I am getting some tumescence from daily use. Dr Google "says" ( no lecturers please) daily 25 mg sildeafil has shown some improvement in tumescence, my 100mg should be lifting my hat off. It also says it can aggravate gout and I can confirm that is true.

PS

Thanks Chris

Edited by member 01 Apr 2016 at 17:24  | Reason: Not specified

Hi OMG I think your GP should get the award for "Trump of the month" what a thoughtless and unprofessional way to behave.

Your consultant knows that there is evidence to show a low dose of cialis taken daily (usually 5mg) has helped many men in your situation. Sadly your GP can disagree with him and refuse to prescribe it but he has no right to be so dismissive and rude.

I don't really have any knowledge on what works for recovery and what works for events so I will leave that to those that do. However I do know that you should not just give up.

I really hope that your consultant will refer you to the ED clinic asap so that you can get all the help and support you need and are absolutely entitled to.

I wish you all the very best and your GP a kick up the backside

xxx

Mo

I am so sorry to hear of the poor treatment you have received from your GP. I think it is appalling.

Forum friends have already offered good advice so I won't repeat. But what I would say is please don't give up! Only those affected by PCa and the ED side effect know what it's like - if your GP had ED as a result of PCa maybe he would have been more sympathetic. Although I would have thought a man would understand how another man felt about loss of function.

I wish you good luck with your next meeting with your ED nurse and hope you will get the best treatment that you deserve. As I said, please don't give up on this!

Best wishes.

Sorry Walnut, which research do you mean? I was commenting on the links you posted above.

Hi Thanks again for all your replies, just to update,

I went to see the Consultant just over four weeks ago and explained the situation with the GP who would only prescribe Sildenafil and how he had recommended Cialis, his response was he cannot issue prescriptions and can only advise the GP, however, he understands each surgery is their own business and they can decide what to prescribe, so if that is what they have said then their is nothing that he can do, he then went on to say, there is no difference anyway as both the drugs are from the same family and work the same way ?

Any further discussion about the way one works longer and the importance of penial rehabilitation was met with he can only advise and will write to the GP again, but it is their decision, and he recommended trying the Sildenafil.

I also asked how I obtain a vacuum pump, he said they, the hospital Urology and ED department do not issue them, again, this was for the GP surgery, he would however contact the alleged specialist nurses in the ED clinic to arrange a loan of a pump to see if I got on with it, that was four weeks ago, no contact from the nurses, but then again I have never had a reply from them when I left a voice mail immediately post op regarding catheter issues etc.

I therefore saw my GP after seeing the consultant, and had a prescription of Sildenafil 100mg which i broke in half and tried. No real benefit, incredible headache, very flushed and hot face but nothing else, I have persevered with the 12 tablets I was prescribed over the past four weeks with no real results.

Yesterday I had my prescriptions for other medication renewed so put in for another prescription of Sildenafil, a GP rang and as this was the first repeat prescription asked how the Sildenafil was working, I said no real difference yet, she said in that case it clearly doesn't work so I will not reissue it

I argued strongly that this decision was purely financial and not in my best interests as medication appeared the only hope I had to regain a normal life, and I had accepted this was a long journey, I wasn't expecting a quick fix, so why was she !  I am sure she has issued repeat prescriptions for methadone for druggies who made a conscious decision to take drugs, and Nicotene patches for smokers, my condition isn't voluntary or self induced, so why give up after one prescription!

I also requested a prescription for a vacuum pump, but again she said this was only available if purchased privately or if the ED clinic and consultant prescribed it, I explained I had already been down that road, and they passed it back to the GP, so basically going round in circles. She agreed one further repeat prescription for 12 tablets and will write to the Consultant as it appears the Sildenafil is not working and therefore is not cost effective to repeat it.

I asked where do I go from here if the Sildenafil and vacuum pump are not prescribed, her response was they are available privately.  

I would be interested to know, are the vacuum pumps available on the NHS, her words were, this appliance is a red drug which cannot be prescribed by a GP surgery and can only be prescribed by a Consultant ? Also how many tablets such as Sildenafil are normally or on average, prescribed for a one month or three month prescription.

HC

I think we live in adjoining counties and not sure if it is the hospitals or GPs that are problem.  I think my GP might just do what the consultant suggests, I got 4 sildenafil per month and a pump six weeks post op on the recommendation of the ED consultant. I stopped the sildenafil when the surgeon said it was a waste of time. About 10 months post op after getting some tumescence  the surgeon put me on daily 100mg  sildenafil, the blue vision and stuffed up nose does subside, but they are having some effect, not bad for a "supposedly" non nerve sparring op. Bit late for you and me but the attached link explains that tumescence and erections are controlled by separate nerves and may explain why some of my nerves appear to still works.  I am now 2 years and two weeks post op and as well as some tumescence I can also "flex" my penis. Also got Muse on the advice of the ED consultant.

https://youtu.be/0sC6sZCMG7w

I am sure I read that the sildenafil or equivalent PDE5 should only be withdrawn after two years if there is no success. I think this is from the latest NICE guidelines and although they are guidelines I am sure I read that they can be used in lawsuits if not adhered too.

Managing adverse effects of radical treatment

X

Edited by member 06 May 2016 at 18:43  | Reason: Not specified

PSA tests, I was scheduled for 6 weeks then 3,6,9,12,18 and 24 months. I have had the odd extra one or two. After one year I should have been passed to GP but was kept under Urology because of the stricture problem. MIL had breast cancer and later patients had the frequency of their tests stretched out by another month.

Think it is just a way of saving money.

Thanks Chris

Re testing

The most common pattern would be 6 weeks post-op and then three monthly for the first year or two, then 6 monthly for about 5 years, and then annual testing. Obvs this would be different if the PSA started to rise at some point.

Who has said 4 monthly is enough - your surgeon or the GP?