After much hi jinks with trying to get an appointment with Prof Nicol at Royal Marsden, with my lovely wife chasing up multiple doctors to try to get me something as early as possible, she eventually received a phone call from Prof Nicol's secretary at 5.30pm on Thursday asking if we could make an appointment in Sutton at 9.30 am on Friday!! Apparently the Prof was due to go away for 2 weeks and they wanted to get me in before then.
We had no hesitation and took it. In my mind in was doing the numbers...if the lymph node had grown from 8mm to 24mm in 3 months, that makes approximately 4mm of growth every 3 weeks...made me think that time was of the essence!
after an uneventful journey we filled out some forms, presenting passport and address ID as requested, then settled in for an expected long wait. Being at the RM was another eye opener. As the hospital obviously specialises in cancer treatment there were lots of people there that were in a much worse state than I, this we found (selfishly) rather depressing. I guess having experienced very few physical symptoms to this point (apart from the obvious results of the orchidectomy) it had been easy for me to effectively ignore the fact that I have a life threatening disease. This drove it home with a sledge hammer!
Anyway, thankfully we were called in very quickly - the usual weigh in, then sat in a consulting room waiting for the Prof.
Prof Nicol was great. As the chap obviously has a brain the size of a planet (looking at his CV) we expected someone mildly autistic with very few social skills - we couldn't have been more wrong. He was very friendly, understanding and easy going, probably more so than my oncologist in Brighton (who we also rate very highly).
Same can also be said of Dr Huddart, the consultant oncologist, who popped in to discuss chemo. Feeling very fortunate, and amazed that they manage to make me feel like I am the most important person in the world to them at that point - makes me feel very confident. I know I keep saying this, but the NHS has been brilliant from start to finish.
Anyway...Prof Nicol explained the process and various decision points.
Stage 1: PET scan to identify if the spread is limited to the area they expect it to be.
If they find more spread than expected then revert to BEP. If not, then advance to...
Stage 2: Operation to remove main mass and surrounding lymph nodes.
The procedure would be carried out in Fulham Road, ideally by robotic surgery!! They would make 4 holes and remove around 15 lymph nodes. Risks?
- Loss of ability to ejaculate - not loss of feeling or arousal or orgasm, just potential loss of 'the White stuff'.
- Slim chance of having to convert to open surgery which is unlikely to be nice
A day or two in hospital and then home to recover, followed quickly by a shot or two of carboplatin to mop up residual cells. Not sure the exact order of events, but they would do a biopsy on everything they remove, if they find more than they expect in surrounding lymph nodes, then revert to BEP. Otherwise, 'chemo lite' above.
Got an appointment on Saturday morning for the PET scan next Friday. Bring it on, just want to get it done now!
So that was more or less it. I find my self back where I was at Christmas, worrying about what another scan will find that the CT scan hasn't already, thinking "what if it's gone somewhere else?". Although the worry is nowhere near as bad as it was at Christmas, it's amazing how resilient the mind can be and how I seem to be able to separate my mind from my body and take it all in my stride. I guess you do get somewhat punch drunk after a while and you kind of get used to attending appointments and having scans, and you find yourself discussing major operations like you would a trip to the park.
