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Waiting too long

User
Posted 03 May 2018 at 19:46
Hi my husband has been diagnosed with prostrate cancer on the 19th April with a PSA level 8.9. Gleason score of (4+5). T stage 2

He was informed it's a nasty one . Since then he has had a bone scan which was clear.

We are very concerned that we now have to wait another 5 weeks before we see the radiologist on the 12th June..

That's really worrying us . What if the cancer does spread over that time .Can we do anything to get an earlier appointment ?

User
Posted 03 May 2018 at 20:03

Has he started taking the hormones?

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

User
Posted 04 May 2018 at 08:55
No hormones yet. Appointment to see dr on the 12th June . I am worried I have to wait so long .
User
Posted 05 May 2018 at 23:04

Without knowing a lot more it's hard to say but on the face of it waiting that long appears too long.  If it was me I'd be looking to find the fastest route into finding out why and what can be done about it.  You might ask why with a Gleason score of 4+5 it's being treated as non-urgent as an injection only takes 10 minutes, if that's what it is.  It might be an oversight and they'll take you in.

Whether to start with the diagnosing doctor and ask why and whether he can refer you to another oncologist perhaps at another hospital, or to go direct to the oncologist.  Perhaps to go via Macmillan if there is a nurse to speak to.  Although I found the Macmillan nurse didn't seem very helpful when I thought one of my appointments was longer than I expected, but your case may have more foundations.  Without knowing more it's hard to say but it seems you have a good case to be given a good reason why or be seen well before then.

User
Posted 05 May 2018 at 23:47

It is unlikely to spread in 5 weeks, he has possibly had it for many years so a few weeks won’t make much difference. However, some of your story seems to be missing - has your husband already seen a urologist to discuss surgery or was he told that radiotherapy was his only treatment option? Were you given the name of a specialist nurse that you could contact? If so, give him / her a ring to find out whether your husband should have been prescribed some hormone tablets while he waits. It may be that they are considering surgery in which case he doesn’t need hormones.

Does he have any other medical conditions?

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

User
Posted 06 May 2018 at 03:25

Also, we are not told whether the forthcoming appointment is with a urologist or an oncologist. Whilst it may not make any significant difference to the development of the cancer in the interim, from the Patient's view point this aspect is clearly a concern which is being prolonged by the rather long wait in the circumstances. Nothing to lose by asking if appointment could be brought forward.

Barry
User
Posted 06 May 2018 at 12:18
The appointment is to see an oncologist to start hormone treatment. We have decided to have the radiotherapy, we had a choice at a different hospital.

The hospital where the tests were done refer you to another hospital miles away to have the radiotherapy . We asked to go to one nearer home and this is where we have the long wait to start the hormone therapy.

Thankyou for your advice we will ring the hospital to try and start the hormone treatment asap.

User
Posted 06 May 2018 at 13:46

Often RT is preceded by a tablet taken orally for 2 or 3 weeks to avoid 'flare' and thereafter 3-6 months of HT by way of injections. This helps shrink and restrain the cancer, thereby helping the RT do a more effective job. It is likely that HT will continue during and beyond the course of RT.

Not all UK Hospitals have the latest RT linacs for treating with External Beam radiation and whilst ii is more convenient to have treatment nearer home, some men may feel it is worth travelling further to be treated with more cutting edge linacs if not available locally.

Barry
User
Posted 06 May 2018 at 18:09

It is possible that the hospital nearer home has assumed that the first onco started your OH on hormones. Definitely give the urology department a ring on Tuesday to check.

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

 
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