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Localised Gleason 9 (4+5) just diagnosed, treatment plan too slow??

User
Posted 28 Mar 2019 at 00:07

Hello,

Got the sad news that a close relative has just been diagnosed with T2 PC with a gleason score of 4+5. The lesion is localised on one side of prostate only  PSA is at 6, but now lymphocyte count slightly high  (most recently)

 

The biopsy was taken one month ago, follow up was only today, this is three mlnths after bump was noticed by the GP.

My concern is that the treatment plan is moving too slow because the plan now is to have a PET and start hormone therapy immediately with another follow up in 4 weeks. At this point it will be the decision to treat date for the prostatectomy. 

Can anyone advise? Is there a way of moving to a larger hospital trust that he may get surgey offered sooner? How would we go about doing this? Finally, can anyone recommend surgeons or trusts in London lr the Midlands via PM as we are all quite anxious with this news.

thank you for reading!

User
Posted 28 Mar 2019 at 01:00
I don't know about the timings in your case but it's not unusual to see long diagnostic periods with PC. Apparently this does not impact the quality or quantity of remission, but it certainly doesn't help you psychologically!

The PET scan is to make sure they have the staging correct and this is vital to correctly inform the treatment plan.

Just keep nagging your medical team to try and speed things up. You may be able to get scans etc more quickly privately.

User
Posted 28 Mar 2019 at 01:30

3 weeks for each set of test results is normal (just had a 4 week wait for a full body MRI scan result myself). This can be followed by a wait for the next test which can be a couple of months if it involves operating theatre time. PET scans can also have a long waiting time because production of the radio isotopes required is not a reliable process, and they can go for periods with no isotopes available for use.

PCa normally moves slowly. The only semi-urgent thing is to get on to Hormone Therapy ASAP if that's going to be part of the treatment, as it stops any progression for the time being, and for some treatments, you have to be on HT for 3 months first. This does give you plenty of time to find out about any different treatment options you might have, and plan around other things such as holidays.

I don't know any connection between lymphocyte count and PCa at this stage. Biopsies come with a risk of infection, but happening a month later seems unlikely to be the cause.

User
Posted 28 Mar 2019 at 09:50
Once you've started hormone therapy, then you are on your way.

No cause for alarm.

The rest of the tests can be done while the hormones do their work preparing you for surgery.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 28 Mar 2019 at 18:32

Is the surgery or radiotherapy done at your trust.  It might be better to try to get faster PET scan results and then ask about alternative hospitals for surgery or radiotherapy.

Sometimes there are arrangements with other hospitals for treatment after diagnosis.

For example in our area my local hospital only does Prostate Cancer diagnosis. Surgery and Radiotherapy is offered at 2 other not too distant hospitals.  Although only one of them is the default, you have to ask for the other.

 

On the other hand you might ask is the PET scan essential and is surgery possible for the next step.  Sometimes new patients don't know what to say and follow what the doctor says. I'd think he'd say he wants to do an accurate diagnosis though.  My doctor said he'd rather take longer and get it right whereas I said I'd rather he did it faster as we know it's there.

 

Edited by member 28 Mar 2019 at 18:36  | Reason: Not specified

 
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