GP Cancer Care Review

Hi GilliB , sounds to me like the GP isn’t aware that chemo is even happening.  Perhaps the oncologist hasn’t updated him.  Anyway, no idea why the GP would do a review at this stage.  Do let us know though.  Hope round 1 has been ok and good luck with the remaining rounds.  Best wishes, David

Hi David2017

Thank you for reply.

I have no faith in this doctor he doesn’t seem to know what he is doing and hasn’t even seen my husband in person since this all started in February. In fact my husband has had 4 doctors involved by phone, email, sending for blood tests etc but not actually seen a GP. I’m feeling excluded from this phone call as I won’t be involved and my husband is saying no to any support groups at the moment. 

We only discovered it was a 2 week urgent cancer referral by accident on the NHS app. Apologies for the rant haven’t had my morning cuppa yet.

I think we need to speak to the practice manager but I’m scared they’ll think we’re causing trouble etc.

Anyway onward we go.

Hi GilliB , personally at this stage I wouldn’t be at all worried about seeing the GP.  You are presumably under a consultant and that is who you should be looking towards to give you info.  In my case, the GP surgery administers the drugs but under direction of my oncologist.  Listen to the GP on 29th but don’t expect too much from them.  If you have any questions, try this forum for advice from people who have been there and done it!  Best wishes, David

Just wanted to add  something here.

First, I was advised by my oncologist to take 1000mg of Calcium and 1000iu of vitamin D daily to mitigate the possible effects of the hormone on the bones. In my case the Consultant put it on the letter to the GP, so they prescrbed it before they were asked.

They did the one month thing with the hormone therapy, and have just given me my first 3 month injection. Apart from the fact that the doctor I had the appointment with hadn't done that type of injection before, everything went quite well.

My GP surgery (all of them) take the view that, in terms of treatment, the hospital knows more than they do so go with it.

They did, however, talk to me at the very start and describe the sort of process I was going to have to through in a calm, level headed fashion, which was the first stage of me calming down.

They are part of 4 GP surgeries who have a cancer support team who have been very pro-active in contacting me and taking my views into account. I think that most surgeries are supposed to have one, so perhaps find out and ensure they understand that you are far removed from "happy".

As David2017  says, communication seems to be an issue. I had seen this before with an old friend who was under Moorfields Eye Hospital for a long term condition. He was rigorous in taking notes and keeping copies of things. On one occasion he turned up at a consultant's appointment and they couldn't not find his records. He handed over the lever arch file he was carrying and told to copy what they needed.

I'm even worse, in that all the paper I am given is stored in a folder, and scanned into my computer. I use a piece of free software called OneNote (this is not an advertisement) to keep it all together. Best thing about that is that I can access it on my phone or tablet. People raise their eyebrows when I open the tablet and take notes as I go.

The point of all this rubbish is that, however effective all of this is, you feel more in control - that you are actually DOING something. That helps me, especially when I have about another 5 months before radiotherapy kicks in.

And, having had a close re-read of all the information I have, I am going to be asking questions about why, 2 years ago, the MDT Team at the same hospital told me that I was free of problems and did not have to worry them again unitl my PSA level reached 15. I wasn't totally happy about that then, and am much less happy about that now.

The more you find out, and know, the more you can guide the conversation about treatment etc.

The people on this group are the most wonderful people to help with this.

I'd take them over my GP any day, and that's not doing him down. He is a General Practitioner. We are all becoming specialists.

Hello MSTEV

can I just congratulate you on a brilliant reply and for taking over control for yourself of this darned prostate cancer. Similar to you, I took notes etc but had never thought of digitalising everything. If I find time, I will attempt to scan all the letters, results, my diary etc into digital format!

good luck with your treatment - I hope all goes well!

Hello Gilli, I’m sorry to read of your concerns and your loss of confidence in your GP.

my husband had had absolutely no contact with a GP since diagnosis and never offered a ‘cancer review’. All of his care has been managed by the oncologists once he had been through the urology diagnostic pathway. The surgery nurses administered the hormone implants and take his blood for PSA every 6 months. It’s convenient for us!

 I won’t add any more about who should or should not be seeing your husband about his treatment because you have already had some excellent replies.

however, I would like to pick up on your suggestion of perhaps contacting your practice manager. I have done this on a few occasions in the past and have always received a courteous and formal reply. I have written to query, chase up appointments or results etc, to complain and to thank for an excellent service. Having worked in the NHS, I know how much patient and family feedback is appreciated. It’s through such feedback that services can be improved. I have found that letters of complaint ( we complained about appalling service in urology too) are usually replied in terms of ‘we are sorry you feel’ rather than ‘in sorry we did not serve you well’! They are also often filled with excuses - lack of resources, unprecedented demand’ etc. But if there is a pattern of complaints then they have to act!

I think of this cancer journey as a battle on two fronts. One is the battle against the disease and the other is a battle to get my husband the proper and timely care for which he has paid in a whole lifetime of taxes. If he doesn’t get the care he needs and deserves it is the Government reneging on a contract - in just the same way as if you pay a travel company for a good hotel etc but end up in a tent!

Reading through this, I am wondering if I might sound too ferocious! I hope not!!!!

Thank you for your invaluable response.  I also take copious notes and that made me smile as  I also had to produce a copy of a PETscan as the consultant hadn’t had a copy!

There is so much read up on and I realised today that some of the side effects I was worrying* about are discussed in the leaflets we’ve been given. Re read time me thinks!!

Interesting re the Vtamin D and Calcium. CNS mentioned this. When I mentioned it to the doctor he said needed confirmation via letter. When I asked for this from CNS she said consultant needs to send to GP but at oncology meeting although vit D slightly lower than normal he’s not yet worried. 

There’s so much information here and a wealth of knowledgeable from a very supportive group of people.Thank you.

Thank you. I think I’m turning into a very pushy wife and I’m sure that’s what they don’t like. Given the fact that we have never even met this doctor and he is supposedly our new doctor it’s a bit disappointing. When asked who our doctor is we’ve always said whoever we are given on the day.

I don’t understand why he’s doing a review when he could even organise the first injection and didn’t even have it on repeat prescription til we mentioned it to the nurse who gave the second injection. My faith in his ability is not strong.

I will not be in on the call as he’s calling my husband at work in an open office so that’s going* to be a very short call.

Oh well onward and upward!!

Perhaps we should have a ‘pushy wife’s club’? It sounds to me that you are doing a grand job in supporting your husband! We lost trust completely in the urology department so I can understand where u are coming from. That lost trust can never be fully regained! Take care - from another ‘pushy wife’

There is a website “ iwantgreatcare” where you can see and post reviews on doctors , consultants etc.