My story so far, and a question?

[DoubleZero]

Prosthetics and "when" is an interesting question. May be its a difference between private and NHS, but both my uros were quite happy to fit/install mine at the time of I/O. I know there is (some) talk about risk of infection (blah, blah, ...). But I think that is over stated.

Anyway, each to their own. I very much like having my pair. I know they're fake, my missus knows they are fake, but they do a good job for me/us. And (for me) are an important mental part of my well-being.

[Nish115]

Yh i'll give it a good thought, thanks guys.

Annoying that my results are Friday coming, which is 2 weeks after my operation. They did say it would take that long, but seems a long time to be waiting around when I could be doing/considering Chemo now if needed.. not sure if I should take that as a good thing that they might not be too worried or it's just standard with the NHS.

I have a feeling they'll suggest further treatment or give me a choice which i'm not looking forward too, but we shall see.

The mental effect of it all is crazy.. every single slight issue with my body now, I have to google and worry about, whereas before i'd have just not even thought about it. My bones seem quite clicky at the moment if that makes any sense.. makes my worry that something is wrong etc but it's all mental I hope/think..

[Davepet]

The mental effect of it all is crazy.. every single slight issue with my body now, I have to google and worry about, whereas before i'd have just not even thought about it. My bones seem quite clicky at the moment if that makes any sense.. makes my worry that something is wrong etc but it's all mental I hope/think..

Well, you've had a clear CT scan, so you know it isn't likely to have spread and you've had the I/O so the source is gone.There is a high probability you are already cured. Keeping those thoughts in your head should help reduce your anxiety while you wait for results.

Dave

[Nish115]

Yh I will do, cheers Dave much appreciated.

On a side note, i'm glad I didn't wait to go private the for the operation.. took a week to get a form sent to me from BUPA, then I took it to the GP to fill in who said it will take them a week to fill in and charge me.. it's a joke, the form is one page, it should take 10 minutes to fill in. For something which is relatively serious you'd think they would just do it quickly but might just by my GP.

It will take me till probably the end of the month to get all my BUPA paperwork signed off so I can look into switching to private, by that point i'm hoping to have had my follow up appointment and a meeting with an oncologist from the NHS so can get a 2nd opinion from someone privately/any follow up treatments privately.

[MarkOne]

Hmm. That's not a good advert for BUPA as an insurer.

Not mentioning names but I rang my insurer when I got my ultrasound result. They took my word for the need to see a surgeon based on ultrasound result, and gave me an authorisation code over the phone. The GP gave me a 'To whom it may concern" referral letter there and then (no cost) and I had booked and attended an appointment with my urologist by the same evening. All paperwork sorted over next two weeks but not delaying a thing. Placed straight onto their Cancer Team as soon as it was confirmed and so far they have been brilliant ever since.

[Nish115]

Yh it might just be me not being pushy, but I did say to both BUPA and my GP exactly what was wrong with me, but they both still said that is how long it would take. Its annoying, but I suppose right now i'm at a point where i've had my operation so it doesn't make much difference for the next week. I will go to the GPs tomorrow quickly to see if there's any progress/try and rush them along if I can.

[DoubleZero]

I am surprised at the private bit - not a good advert! My experiences were dramatically different to yours, and similar to Mk1. Everything was very quick. From booking appointments, getting scans, getting results... I also got a phone call from my (first) uro, who was on holiday, when he got telephone confirmation of the pathology!

[Nish115]

Just got told my follow up is now the 6th December.. 4 weeks after my operation. (with the urologist, not the oncologist..)

That seems a joke really.. i've heard people having follow ups the next week or latest two, never four weeks.

I'm going to keep ringing to try and move it forward, but I have a feeling they'll just tell me that is the next available slot.

I heard if you do Chemo you have to do it 6 weeks after the operation, that gives me hardly any time??

Is it okay to have a follow up that late, or is it always earlier?

[ScotSteve]

Seems like a long time. I waited 10 days from operation to follow up. Saw the urologist on the Thursday (private) and then the oncologist (NHS) on the Friday.

Had my vaccines on the Friday PM (4th Nov). Chemo due 28/11. Time passes quickly.

I'll be 2 days short of 5 weeks from surgery to chemo.
I'll be 2 days short of 6 weeks from diagnosis (USS & CT) to chemo. I now wish my CT scan was a little more up to date.

There are a few delays in there - the pathology report was dated a week after surgery. Oncology also said the chemo had to be at least 2 weeks later than the vaccines.

I'd think the oncology appt is more important here rather than the surgical follow up. At my review he simply reflected on the progress since surgery and provided me with my pathology.

Can you find out when oncology are reviewing you?

[Nish115]

Oh really, didn't know it took 2 weeks from that point. In which case i'm even more annoyed that they've made me wait that long. The most annoying thing is it seems like they've messed up. I rang last week and said when is my appointment, and they said they haven't booked it yet and they'll do it and it will be this Friday. But today I rang up and they said it was the 6th.. and i'd know nothing at all if I hadn't have spent hours ringing up.

Yh i'll try and find that out tomorrow by calling. I imagine oncology won't be until the 10th or so. It's all quite annoying really, i'd have hoped I wouldn't have to spend hours finding out.

Thanks though, much appreciated!

[MarkOne]

It does vary. I had an appt a few days after the op to remove the dressings and get path results but the main urologist follow up was about 28 days after the op and as I had all healed at that point, I was discharged from his care. From memory, I first met the oncologist at about two weeks and did my carboplatin at less than 3 weeks post op. My oncologist wanted to be sure I didn't have any wound issues before doing the chemo but once they new that was ok things moved fast. I didn't have any vaccines, not sure exactly what Steve is referring to there.

[Nish115]

It does vary. I had an appt a few days after the op to remove the dressings and get path results but the main urologist follow up was about 28 days after the op and as I had all healed at that point, I was discharged from his care. From memory, I first met the oncologist at about two weeks and did my carboplatin at less than 3 weeks post op. My oncologist wanted to be sure I didn't have any wound issues before doing the chemo but once they new that was ok things moved fast. I didn't have any vaccines, not sure exactly what Steve is referring to there.

But that's what I mean, the same appointment to remove the dressings and get the path results is 4 weeks after my op rather than a few days in your case. That means I wouldn't see an oncologist until after that, and any chemo around 6 weeks after my op if i'm lucky.

All seems really long drawn and will also eat into Christmas/New year (doesn't really bother me that much but it isn't ideal).

I'm going to complain to them because I need to get my dressings checked anyway before then (i'll go to the GP if I need to instead). Ideally like yourself, i'd have liked to have met my oncologist around now and start any possible chemo next week but quite doubtful.

I think my private insurance will go through this Friday, so i'll get on the phone to them on Friday to see if I can get an appointment with an oncologist the following week if possible.

All not very good for the stress levels anyway :P

[ScotSteve]

Oncology told me to organise the flu vaccine and also the pneumococcal vaccine. There should be a 2 week gap between chemo & pneumococcal vaccine.

I hope you get some answers & progress asap.

[Nish115]

Managed to get it moved to next Tuesday which is a bit better, still will be 3 weeks after my operation but hopefully will get to see the oncologist next week too.

On a side note a couple other questions (sorry for asking loads):

- I have changed my dressing 2-3 times since my operation myself, it looks to be healing fine but when do you actually remove all the dressings etc? Should I expect that next week?
- From my CT scan when they injected the dye into my arm, I can still feel a small pain time to time in that area. Is that normal or a bit strange?

I'm ask the doctor also but just wondering if anyone has experience in either? Thanks again!

[ScotSteve]

I was advised to remove dressings (finally) after a week to 10 days. I'm still in some mild discomfort though.

Can't answer the other question!