Help, Tips, Advice, All Gratefully Received

[longsteeple]

Hi Everyone

This is where I've got so far - left testicle removed three weeks ago, then a wait for the pathology report (yesterday) which showed a Stage One nonseminoma (teratoma) found in that left testicle.

No copy of the report offered and only about two minutes with the consultant so details are thin on the ground. Blood markers are apparently normal however and at this point no indication of spread. Now waiting on the cancer doc and anticipating a Cat Scan.

I am slightly frazzled after five months of being told I had epididymo-orchitis, then an ultra scan that showed 'nothing sinister', followed by more anti-biotics, then (hooray!) the scan that was described to me as 'abnormal', then a few more weeks of delay, then the chop, and now this next wait.

Anyway - my question. Do I stop waiting and insist that I get the Cat Scan within the next week, or do I go with the flow? I'm more stressed by all the delays and process flaws than by the actual cancer...any tips on how I might want to proceed? I realise that on balance I'm lucky that this looks to be cancer-lite, but all the same.

Thanks for your interest.

David (Leicester, UK)

[dadmo]

David:
I would push for that scan. It's not a question of do I have cancer it's a question of how bad is it and what is my treatment. The doctor can only make a guess at the staging without having a scan. He probably is right since your markers are normal but markers don't rise in every case.

[ghjones]

Hi David, sorry to hear about your diagnosis, although from the sounds of it you have had some pretty positive indications from your pathology report.

I noticed you are from Leicester - are you being treated by Dr. Benghiat at the Leicester Royal Infirmary? I had indication of spread in the pathology report after the testicle removal, but still had to wait a few weeks for the results. I can sympathise as it is extremely frustrating having to wait, but there is very little you can do to speed it up with the NHS. I actually have comprehensive medical cover, so I asked Dr, Benghiat if I could get the scan done privately (you can get it done at BUPA Leicester straight away)- but he and his team are very against external scans as it bypasses the specialist radiologer/surgeon expereince at the LRI. In the end, I waited three-four weeks for my first CT scan results, but I was reassured by Dr. Benghiat that this was a very short time in the natural progression of the disease.

I think in the end, it is much more important to be with a specialist oncologist on the NHS, even if there are some periods of waiting for results. Dr. Benghiat is very experienced with TC and everything has gone very smoothly with me so far.

All the best of luck for your scan, the results and the weeks of waiting. I'm afraid the waiting can sometimes be the hardest part.

[UK Mart]

Hi David - the waiting is a pain... especially the wait to get 'the chop' although i only had to wait a week or so from diagnosis but it sounds like you've had a mare.

I reckon the NHS is the place to be but the waiting can be infuriating! It shouldn't take more than 10 days from arranging to have a CT scan to getting it done. I had mine done at Christies in Manchester 18 days after the operation and then had to wait a weeks or so to see my surgeon for the results of both.

If i were you I'd insist on booking it as soon as poss - if anything, just to put your mind at rest... also, I'd request a copy of the path report as this makes quite interesting reading - my surgeon was happy to send me a copy of mine! Plus, when i went to see the oncologist (cancer treatment specialist) I took the copy with me to talk through it word by word!

All the best and try not to get too stressed out - also be prepared that you may be given some precautionary follow up treatment (a low blast of radio / chemo) as I think that they do this as a matter of course over here in the UK.
This came as a bit of a surprise to me as i was given what was described as 'the best path report possible and also no evidence of spread on the Cat Scan'

Best,
Martin

[longsteeple]

Thanks everyone. These extra pieces of practical information make all the difference so I do appreciate the time you've given me.

Yes, I will be seeing Dr. Benghiat (tomorrow, as it happens) so that's good progress. I'll feel more comfortable when I've got a timetable for the rest of the work (such as it will be).

Just to mutter darkly - I had the nurse doing the pre-op assessment tell me that - if cancer was found - Oncology would contact me in days, then the consultant urologist's office tell me that the report would take at least two weeks (it took three) and that I wouldn't hear from Oncology until after I'd seen the consultant urologist, and then a GP tell me that the report would have been done quickly and that my not hearing anything meant in all probability that no cancer had been found. It was like - pick one.

Oh well. Hope you're all in good shape, thanks for the very helpful and well considered advice, and let's see what happens next.

Thanks,
David

[ghjones]

David, as luck would have it (if you can call it luck!), i've got my post-chemo consultation with Dr. Benghiat tomorrow morning too at just before 10am. Lets hope we've chosen a day when Dr. Benghiat is feeling like giving good results! I'll try and introduce myself if your appointment is near mine (I'll be the one with the bald head!).

My experience with getting the post i/o results was good. I had a consultation with the urologist 3 days after the op and although the pathology report wasn't finished the pathologist was able to give his first impression that it was cancer. This meant I was referred much quicker (the next week) to the oncologist who was able to tell me about the potential chemo options before the final pathology report was finalised (around 2 1/2 weeks after the op).

Best of luck for tomorrow.....Gareth

[Don]

Any word back from your doctors David or Gareth?????

[ghjones]

My results couldn't have been better thanks Don - I got the all-clear and he's as confident as he can be that it won't come back, unless I am very unlucky.

Feels like a very big weight has been lifted off my shoulders - can't wait to get back to living again. Although I'm not looking forward to repayng the six-months of breakfast in bed my girlfriends been giving me :-)

[longsteeple]

Arrives, Late

My CT scans showed 'suspicious' cells loitering with intent about my lymph nodes. But there was an issue with regard to the quality of the CT images (less than crystal, apparently) so I have a PET scan later today to confirm what seems to have been found. Otherwise it was 'cancer' 'lymph nodes' 'treatment' and a few words about the location of the cells not quite matching what the Doctor was expecting. But the Doctor was definite enough about the most probable nature of the cells, so I don't think - post PET - it will be a huge surprise if our next chat is about treatment.

Gareth, thanks for your words. I hadn't checked here before I went for that first appointment, but I did see you (and traipse after you when the nurse rescued us both from that potentially long wait to have blood taken). But I'm obviously more interested in how to lever breakfast in bed and general soft living out of my wife. I hadn't considered this possible before now.

Great anyway that you're out of the woods. I'm not going to take any bets here on what comes next for me - I sense a certain logic and momentum now that looks rather like it might spoil a perfectly good summer.

Best wishes,
David

[dadmo]

David:
Let's hope the next scan is clean and you need no further treatment. Keep us posted.