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The waiting drives me mad!

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User
Posted 14 Dec 2019 at 20:12

Nothing much to say really just letting off steam.  I'm pretty sure you'll all agree that the waiting is the worst part!  The time periods involved must seem insignificant to others but every day waiting for something to happen or to hear a result can be an agony.  Every time someone kindly texts to ask if I have any news just reminds me that I don't.  It doesn't help that my experience at King's College Hosp wasn't entirely positive.  For example I had to chase for five weeks to get the result of my first MRI.  In the end I only got it because I found the email address of the head of the urology dept and emailed him direct.  Then I was left in limbo for 10 months while my case was transferred from KCH to a hospital closer to home at my request.  I fear the same thing happening again.

Anyway, I had my second Biopsy 11/11, result 26/11 (Gleason 8 T3a High Risk), and told I was being referred to Guy's, but sent for a bone scan first.  Had the scan done 4/12, then silence for another eight days with no follow up appts booked.  Spoke to my CNS last Thursday 12/12.  She said she'd chase Guy's up and call me back the next day.  Then the evening of that day I happened to visit an address I moved out of eight years ago, and what should be there but two appt letters from Guy's!  My current hosp has my correct address, KCH had my correct address, my GP has my correct address.  How the hell Guy's managed to cock that up I'll never know.  It's pure chance I got them because I'm still in touch with the occupants.

So I have a Urology appt next Tuesday at which I will at last hear the outcome of the bone scan, and an Oncology appt 30/12.  There, now I've got that off my chest I can relax!

User
Posted 14 Dec 2019 at 21:04

Everyone is different. I spent the waiting time learning about the disease, about which I knew rather little to start with. My diagnosis went on for about 7 months for various complicated reasons. After a couple of months in, I learned enough to know what the possible outcomes could be for each test, and formed some plan in my mind for each possible outcome, certainly things like what questions I would ask, and maybe what diagnosis or treatment I might ask for next.

User
Posted 14 Dec 2019 at 21:50
My experience of the NHS is that despite of being short of many clinicians the treatment provided by the NHS has been very good. However, the organisation and delays have been most unsatisfactory and I have had to chase and correct errors. On two occasions I have had to enlist the aid of PALS (Patient Advice and Liaison Service) at my hospital to get a response. For some others things seem to have progressed more smoothly. It is quite usual for tests and scans to be considered by a MDT (Multi Disciplinary Team) before being communicated to the patient as a diagnosis and the results may just miss a meeting which will add to the delay. However you seem to have been very unfortunate. If you have not yet done so, I suggest you ask to be copied into all communications to your GP. I also suggest that like me you chase up undue delay.

Do let us know how it goes after your appointments.

Barry
User
Posted 15 Dec 2019 at 10:06

I agree with Barry. The treatment side of the NHS is fantastic. I experienced horrendous problems with the appointment side of things and lack of communication.

I fed that back and got an apology from the minister but I raised it so that it can be fixed!

Even the details the minister had been given had wrong dates in it.

Apparently I had one procedure 3 months before it actually happened.

 

Ido4

User
Posted 20 Dec 2019 at 18:35
Pleased to hear that the bone scan came back clear. Sounds as if the RT/HT route might perhaps be the preferred one? I had "wide area" RT myself and the side-effects were relatively mild.

Whatever treatment you decide on, I hope it all goes well.

Best wishes,

Chris

User
Posted 21 Dec 2019 at 02:25
If you opt for RT/HT, ask whether they would be able to scan you again before the RT starts ... if the lymph node has reduced in size during the HT then it is cancer and if it still looks the same, it isn't so they won't need to zap the wider area.

John had to have his bladder included in the zapping area - it wasn't a problem. On the other hand, did the surgeon explain that having more than a couple of lymph nodes removed puts you at increased risk of lymphodema?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2019 at 13:45
No, you haven’t broken any rules! Barry’s post just alerts other regular posters that there is now a more relevant and detailed thread from you that they can reply to instead. Otherwise, some will post here and others will post on the other one and may inadvertently give repetitive or conflicting replies.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2019 at 14:17
It's always a good idea to keep all posts relating to your treatment together in one thread so that everything is together in one place. If it's split up among multiple threads, the previous information is lost.

Best wishes,

Chris

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User
Posted 14 Dec 2019 at 21:04

Everyone is different. I spent the waiting time learning about the disease, about which I knew rather little to start with. My diagnosis went on for about 7 months for various complicated reasons. After a couple of months in, I learned enough to know what the possible outcomes could be for each test, and formed some plan in my mind for each possible outcome, certainly things like what questions I would ask, and maybe what diagnosis or treatment I might ask for next.

User
Posted 14 Dec 2019 at 21:50
My experience of the NHS is that despite of being short of many clinicians the treatment provided by the NHS has been very good. However, the organisation and delays have been most unsatisfactory and I have had to chase and correct errors. On two occasions I have had to enlist the aid of PALS (Patient Advice and Liaison Service) at my hospital to get a response. For some others things seem to have progressed more smoothly. It is quite usual for tests and scans to be considered by a MDT (Multi Disciplinary Team) before being communicated to the patient as a diagnosis and the results may just miss a meeting which will add to the delay. However you seem to have been very unfortunate. If you have not yet done so, I suggest you ask to be copied into all communications to your GP. I also suggest that like me you chase up undue delay.

Do let us know how it goes after your appointments.

Barry
User
Posted 15 Dec 2019 at 10:06

I agree with Barry. The treatment side of the NHS is fantastic. I experienced horrendous problems with the appointment side of things and lack of communication.

I fed that back and got an apology from the minister but I raised it so that it can be fixed!

Even the details the minister had been given had wrong dates in it.

Apparently I had one procedure 3 months before it actually happened.

 

Ido4

User
Posted 20 Dec 2019 at 18:29

Well that bit of waiting is over anyway.  My bone scan was clear so now I have to choose the treatment.   Just to recap I’m Gleason 8 (4+4) T3aN?.  The question mark is because my MRI showed a possible abnormality in a lymph node.

Because of that the surgical team say they would also want to remove lymph nodes.  This apparently turns a three hour RP into potentially a five hour op, which carries an increased morbidity risk.  Looking at my age and physical state they don’t consider it a good option for me.  They also said that, due to the nature of my cancer, it’s highly likely I would also require RT as well as they couldn’t guarantee the RP would get all the cancer.

The other option is 37 fractions of RT, plus three years hormone therapy.  Due to the possible lymph node problem the oncologist wants to zap them too, which mean applying the radiation to a much larger area than when targeting the prostate alone.  She also said that should the cancer return later after RT surgery would no longer be an option.

I have to decide by my next appt on 8 January.  In the meantime the oncologist has referred me for a PET scan of my lymph nodes to see if that can determine conclusively whether there is cancer there or not.

 

User
Posted 20 Dec 2019 at 18:35
Pleased to hear that the bone scan came back clear. Sounds as if the RT/HT route might perhaps be the preferred one? I had "wide area" RT myself and the side-effects were relatively mild.

Whatever treatment you decide on, I hope it all goes well.

Best wishes,

Chris

User
Posted 21 Dec 2019 at 02:25
If you opt for RT/HT, ask whether they would be able to scan you again before the RT starts ... if the lymph node has reduced in size during the HT then it is cancer and if it still looks the same, it isn't so they won't need to zap the wider area.

John had to have his bladder included in the zapping area - it wasn't a problem. On the other hand, did the surgeon explain that having more than a couple of lymph nodes removed puts you at increased risk of lymphodema?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Dec 2019 at 02:39
You now have started another threat where you speak of treatment and I have posted a reply. I think it would make it easier to follow you if posts are in future concentrated in that thread and the way it develops.
Barry
User
Posted 22 Dec 2019 at 01:08

What?  Apologies if I've broken some kind of unspoken rule.

User
Posted 22 Dec 2019 at 13:45
No, you haven’t broken any rules! Barry’s post just alerts other regular posters that there is now a more relevant and detailed thread from you that they can reply to instead. Otherwise, some will post here and others will post on the other one and may inadvertently give repetitive or conflicting replies.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2019 at 14:17
It's always a good idea to keep all posts relating to your treatment together in one thread so that everything is together in one place. If it's split up among multiple threads, the previous information is lost.

Best wishes,

Chris

 
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