Have seen your reply to Pinkypie in the "newly diagnosed" forum and was wondering where your husband is now and how you are coping. Just thought that you might be interested in my reply to Pinkypie in the "introduce yourself" section of the forum. You may have already read it. Let me know if I can share any of my experiences with you. I am now living a good life 10 years after having my kidney removed. I have secondaries and am stage 4, but well controlled with oral chemo.
Secondaries appeared in the lungs three years after the kidney was removed. They were tiny and caught very early. This was down to the excellent monitoring I was receiving. A maximum gap of 3 months or a minimum of two weeks between reviews.
Hi David, glad you are doing well. I've only just had first scan after 12 months from surgery and my consultant has said I will have another at 3 yrs and one at five years. That's it !!
Well, I obviously do not know the full details of your case but my scans have never been more than 6 months apart, at the best times, and at the moment I am scanned every 12 weeks and bloods every six weeks. However, I am stage four and would expect this level of surveillance. Sometimes the frequency increases depending on results. I also have direct contact, at any time, with my nurse specialist. Your current state may well suggest the style of monitoring that has been set by your Consultant, but personally, and given the experience and benefits I have had from very detailed and regular monitoring, I would not accept the monitoring programme set by your Consultant. Much could happen within the very long time spans between scans. It is essential to catch things as they happen. I have known a number of people who have had massive gaps between monitoring and have suffered as a consequence.
Well, I obviously do not know the full details of your case but my scans have never been more than 6 months apart, at the best times, and at the moment I am scanned every 12 weeks and bloods every six weeks. However, I am stage four and would expect this level of surveillance. Sometimes the frequency increases depending on results. I also have direct contact, at any time, with my nurse specialist. Your current state may well suggest the style of monitoring that has been set by your Consultant, but personally, and given the experience and benefits I have had from very detailed and regular monitoring, I would not accept the monitoring programme set by your Consultant. Much could happen within the very long time spans between scans. It is essential to catch things as they happen. I have known a number of people who have had massive gaps between monitoring and have suffered as a consequence.
Hi David
Not sure if you got my reply
I think you are right, I had a bit of a raw deal in the beginning and had to raise a complaint. Aftercare was practically none existent. I've just had to wait nearly 5 wks for my first scan result because my consultant took a 3 week holiday and my results sat waiting for his return ! Still positive though, the result was good this time around . The tumour was 7cm T3a, grade 4. Don't have much more info but happy to be O.K for now
Yes Jeanne, live for the moment and enjoy it. You did seem to get, and perhaps are still getting, a raw deal regarding on going surveillance and monitoring. May be my hospital is over zealous, but monitoring seems to be seen as a form of ongoing treatment in its own right. It has been of such great value and significance for me.
