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.
Hi I David
Dave is doing ok considering he is only 3 weeks post op.
It is great to hear your story as he has one metastasis in his hip and we obviously don't know what treatment will be. However feel better knowing all primary gone-it's a good start to the journey
Like all spouses I find it hard to see him depressed and unwell but he is beginning to improve quite rapidly. Hopefully we have turned a corner
Nice to have support
Zelda (names Lynn really, Zelda one of my nicknames!)
Hi, did you get a reply from me in respect of your last posting? I am hopeless with technology and think that I may have lost it in the systems somewhere!
Just a few thoughts about David's good progress since op and lack of info for relatives. Do not want to repeat it all here if you received it.
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.
Uodate on my David! 5 weeks post op and he has been discharged by the surgeon, operation was complicated but he has made a remarkable recovery according to surgeon. Still gets tired easily but is more or less pain free and walks over a mile each day
Next stage is oncology who are doing 4 scans and we will get the results on 4th Jan. Depending on those is whether they start treatment now or watch and wait. So far only one secondary in hip do scans are to ensure nothing hiding. They have. Even very reassuring so we have to try and stay positive
Great to hear from you. Your David's recovery sounds very much like mine. He is doing really well.
The most important things now, are the regular scans and reviews. Hopefully, David will be put on "watch and wait" which is a treatment in itself. At the same time he should get regular scans and monitoring. At this stage, and from what you have said, I would be be very optimistic and positive. Base your future on what you know now, and not on what might be. Enjoy life to the full.
I am doing really well. Just coming to the end of a cycle of chemo and coping pretty well. This is self administered at home. More scans and results later this month. Living life to the full. Do get tired though, and the chemo does have nasty side effects, but I am managing the side effects much better by being proactive rather than reactive.
Do keep in touch and hope you all have a really great Chrrristmas.
Great to hear from you. Your David's recovery sounds very much like mine. He is doing really well.
The most important things now, are the regular scans and reviews. Hopefully, David will be put on "watch and wait" which is a treatment in itself. At the same time he should get regular scans and monitoring. At this stage, and from what you have said, I would be be very optimistic and positive. Base your future on what you know now, and not on what might be. Enjoy life to the full.
I am doing really well. Just coming to the end of a cycle of chemo and coping pretty well. This is self administered at home. More scans and results later this month. Living life to the full. Do get tired though, and the chemo does have nasty side effects, but I am managing the side effects much better by being proactive rather than reactive.
Do keep in touch and hope you all have a really great Chrrristmas.
