Same seems to have happened to me too - no notifications or emails...
Good to hear that your Dad's op has gone well, fingers crossed for you when the pathology results come through. I know what you mean with the waiting game, we're back in limbo again here. Nothing has happened in the last few weeks, no treatment, no hospital trips, only a couple of district nurse visits to flush the PICC line out. We've been told the line is staying in for now, which gives me a bit of hope that there will be some further treatment, whether it's immunotherapy or a different flavour of chemo, well, time will tell I guess.
I can't help but worry as we're still in the dark as to whether the chemo has been effective, and her disease is high grade so I am worried that it will come back angry now that the Gemcarbo has been pulled. Mainly trying to focus on getting to Christmas without any trauma now, I'm planning to have Mum here Chrstmas day, so she can spend Christmas morning watching the kids open their presents. However, the grind of the last few months does seem to have taken its toll, and it's hard to look any further forward than that right now.
All the best to you and yours - and Dedalus as well if you're about.
Hi Chris & all,
its bizarre isn’t it as I’m getting notifications of posts to other threads I’m not on but not this one
hope you’ve had some good news with the outcome of your mum’s chemo?
we have an app with the consultant tomorrow following dad’s kidney removal. We did however manage to get a copy of the letter the hospital sent to his gp following the MDT meeting a few weeks ago, confirming that they are recommending adjuvent treatment & referral for chemotherapy. The codes they used following the biopsy were
-tcc renal pelvis G3, pT3, pN0, excision clear
i think this means grade3, stage3, not extended to lymph nodes (previous scans had shown no spread to any other organs so assuming that is why they haven’t referred to any metastases codes)
am a little confused by what stage 3 means as the info on the net seemed to suggest different things-hopefully the consultant will be able to explain but am sad to say we haven’t had the best experience with him.
on the day of the op he said they wouldn’t be removing dad’s lymph nodes as Dedalus had highlighted as there was no research to support this-this took us by surprise as the specialist nurse had told me they do do this but he was very reluctant to give me any further explanation.
he also said chemotherapy may not be given despite the EU guidelines for tcc and if that’s what the oncologist decided at the MDT we wouldn’t be able to meet with the oncologist to understand why. When I then asked how the offer of 2nd opinions on the NHS worked if we couldn’t speak to that oncologist he then said we go through our gp but he would then stop treatment. That obviously scared my parents as it was just as the consultant was about to operate on dad so we haven’t said anything since then and I’m not really looking forward to have him talk at us again tomorrow :-(
any advice any of you can give how to navigate through this would be most welcome! Given dad’s 78 and his EGFR dropped from 50 pre surgery to 40 and now 37 I imagine we’ll need to give what treatment is best some thought and I’m not sure how great the consultant is at explaining things. Hopefully if he’s being referred for chemo it means they will let us speak to an oncologist and he/she may be more helpful....
Anyway that’s my worries out there! Hope you’re managing to look forward towards Christmas? I see it so differently this year
all the best and thanks for any suggestions :-)
Good to hear from you!
Hopefully you've had your consultation now, and hopefully the news is positive. You're correct that your next step should be an meeting with oncology, who will be able to talk through exactly what's going on and what will happen next. The drop in EGFR is apparently common after nephrectomy - the exact same thing happened with my mum grading you got sent is Grade 3, stage 3, no lymph node spread and no distant spread. The excision clear bit means that they haven't left any of it locally, so they got the whole tumour. Another expression to look out is clear margins. My mum was unlucky in that respect in that they the margines weren't clear (so some got left behind) and she was also n1 they removed the node with cancer present at the time. Fingers crossed that it's good news for you.
Our situation is pretty much the same. No change in mum's overally condition since they pulled chemo, but still no clue as to whether she responded to chemo. She had her post-chemo scan on Monday and we're due to see the oncologist for results on the 20th (yeah, great timing just before Christmas). However, being more positive, looking back to where we were back in June, where she deteriorated quickly and how bad things got over the summer, I'm just amazed that she's pulled round so well. I set a load of little milestones back in June, and the last one on the list was Christmas and that's looking good so I'm going to have set some new ones now, which is fantastic!
I'm playing taxi next week driving her all over the place to see the kids do their Christmas plays at school, which I suspect is going to be a bit emotional.
Anyway, hope all is ok, no doubt I'll be back on after the 20th for either good news or a bloddy good moan.
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