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Covid delays for treatment

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User
Posted 21 Oct 2020 at 18:07

Hi,


My Dad was diagnosed a few weeks ago with a PSA of 12, we got the bone scan results (clear!) but the biopsy results were less good and showed a pretty aggressive tumour (i dont know the scores but it is Gleason above 8). We were told we need to get going with treatment quickly to stop the spread but I'm now freaking out because I've heard there are loads of delays because of covid. I have no sense of how fast an aggressive cancer grows, but i heard there is at least a 7 week wait for surgery and likely the same for radio (we havent decided which route to go down yet). Does anyone know anything about this? I'm worried this wait might mean it spreads further and then we have a whole other thing to deal with. Also struggling a bit to work out how to manage the new family dynamic & manage Mum too. Anyone have any ideas thoughts?


Thank you so much,


Lucy

Edited by member 21 Oct 2020 at 22:02  | Reason: Not specified

User
Posted 21 Oct 2020 at 21:31

hi,


It is a worrying time being diagnosed, choosing treatment and waiting for it to happen.  Your imagination can run riot.


As Lyn says above if he chose Radiotherapy they could start him on hormones very quickly and the treatment with RT starts months later.   I recall the consultant saying to me if I chose that route they could start almost immediately.   I didn't want that route though.


For some people though RT is the best route.   But they leave the decision to the patient unless it's obvious.


They also told me it was normally slow growing although it didn't stop me wanting it removed right away.  Especially as it was graded fairly aggressive and near the edge.


I don't know who told him it needed treatment right away or that there is a 7 week delay.  It seems a strange thing for a doctor to say.


If he wants surgery he should ask the surgeon how long it will be and if there are other hospitals who can do it quicker if it is 7 weeks.  I'd think 2-4 weeks is fairly normal from when you see the surgeon and it can take up to 2 weeks to see the surgeon.


If you're aware of the date of his appointment with the consultant to decide his preferences you might work out how long you expect treatment to be and ask why if it's taking longer.


If surgery is delayed it is known, but unusual in the NHS, to be given hormones to shrink the lesion before surgery.  I've seen it on private hospital websites in the UK.   If the NHS has excessive waiting times it might be  a route to reduce risk if they agree.


Good luck, Peter

User
Posted 21 Oct 2020 at 21:01
Prostate cancer is a pretty slow growing cancer so there is no need to panic. In normal times, hospitals have a target of starting treatment within 62 days of the patient making their choice so if dad sees the uro and the oncologist and then decides to have surgery, getting the op in 7 weeks would be well inside normal target. If he decides to go with radiotherapy, the oncologist may start him on the hormone tablets the same day - radiotherapy is then usually 3-6 months later because the hormones need to starve the cancer & shrink the tumour first.

There is no reason to think that Covid is going to lead to the cancer spreading.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 21 Oct 2020 at 21:01
Prostate cancer is a pretty slow growing cancer so there is no need to panic. In normal times, hospitals have a target of starting treatment within 62 days of the patient making their choice so if dad sees the uro and the oncologist and then decides to have surgery, getting the op in 7 weeks would be well inside normal target. If he decides to go with radiotherapy, the oncologist may start him on the hormone tablets the same day - radiotherapy is then usually 3-6 months later because the hormones need to starve the cancer & shrink the tumour first.

There is no reason to think that Covid is going to lead to the cancer spreading.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2020 at 21:31

hi,


It is a worrying time being diagnosed, choosing treatment and waiting for it to happen.  Your imagination can run riot.


As Lyn says above if he chose Radiotherapy they could start him on hormones very quickly and the treatment with RT starts months later.   I recall the consultant saying to me if I chose that route they could start almost immediately.   I didn't want that route though.


For some people though RT is the best route.   But they leave the decision to the patient unless it's obvious.


They also told me it was normally slow growing although it didn't stop me wanting it removed right away.  Especially as it was graded fairly aggressive and near the edge.


I don't know who told him it needed treatment right away or that there is a 7 week delay.  It seems a strange thing for a doctor to say.


If he wants surgery he should ask the surgeon how long it will be and if there are other hospitals who can do it quicker if it is 7 weeks.  I'd think 2-4 weeks is fairly normal from when you see the surgeon and it can take up to 2 weeks to see the surgeon.


If you're aware of the date of his appointment with the consultant to decide his preferences you might work out how long you expect treatment to be and ask why if it's taking longer.


If surgery is delayed it is known, but unusual in the NHS, to be given hormones to shrink the lesion before surgery.  I've seen it on private hospital websites in the UK.   If the NHS has excessive waiting times it might be  a route to reduce risk if they agree.


Good luck, Peter

User
Posted 21 Oct 2020 at 21:50

Thank you both. So even if it was graded very aggressive it is still quite a slow growing cancer? I kind of assumed aggressive meant it could spread quickly and quickly in my mind meant weeks? I think his is near the edge as it was graded localised advanced which from what I understood made surgery potentially a little more complicated. We are waiting on an oncology appointment & then will make the decision based on what they say. Seems to be a 50/50 view right now on what’s best but as you say these first few weeks are pretty horrible, you go from thinking - prostate cancer is super common and it’ll all be fine, to ok this looks more complicated, to ok it’s aggressive what does that mean & then mind goes wild. 

User
Posted 21 Oct 2020 at 23:46
Aggressive doesn't mean what it sounds like. It means that the cells are more distorted than they might be - the cells are graded 3, 4 or 5 and a 5 is more distorted than a 3 or a 4. 4s and 5s move from one place to another more easily than 3s do but not in a matter of weeks. From the sound of it your dad has already had prostate cancer for a long time; locally advanced means it has come out of the gland. Did they say it was definitely locally advanced or that they just think it could be?

As I already said, if he was to have surgery the hospital should arrange the op within 2 months of him making the decision - prostate cancer isn't like some others where the person gets diagnosed and they are in theatre the next day.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Oct 2020 at 02:27
At the height of the lockdown, my surgeon and his clinic at Guildford had their prostate surgery up to 80% of pre-Covid capacity.

All the staff were Covid tested weekly, the patients had to self-isolate for two weeks and have a coronavirus test the day before the op.

I would think it’s up to near 100% capacity now, so I shouldn’t worry too much about delays.

Best of luck.

Cheers, John.
 
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