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Advice needed - Stage 4

User
Posted 18 Oct 2019 at 15:50

Hi all

I am new to this, Dad was diagnosed back in May with a PSA level of 136 had an Orchidectomy as first thought it was testicular cancer but after further investigation stage 4 prostate cancer was diagnosed due to the size of the tumour and was advised cancer is Ductal but no Gleason score, Dad was started on hormone therapy initially working well and in August PSA had come down to 39 so carried on with the hormone therapy, we went back to see oncologist on 3/10 PSA has risen to 139 and now chemo is the next step despite on the last appt Dr advised could be too risky as Dad has other health issues and is overweight, Dad is lucky not to have any symptoms at all and feels absolutely fine so I asked could we not delay the chemo if he feels ok as it will make him quite poorly and he quite callously said your dad will die within 3 months with no treatment! now not one medical professional has said my Dad is terminal we were in shock and were literally speechless anything said after that I couldn't tell you :( as Das was so down and saying he's on borrowed time I decided to get a second opinion from the Royal Marsden who have now advised today that they wont be transferring my Dad's care as they have a high number of referrals and Dad is already receiving a high level of care so now even more deflated :( not sure where to go and what to do now as all we have stuck in our minds is 3 months....he is also waiting for a PSMA Pet Scan at the Paul Strickland Centre @ Mount Vernon Hospital which I have chased and chased and nothing they cant give a date, I have also emailed the oncologists secretary expressing my concerns but don't hold out much hope.

 

Anyone that can shed some light would be helpful, I just feel the doctors presume you know what's next, no one has answered our questions or explained anything :(

 

User
Posted 19 Oct 2019 at 10:21

You don't say how old your father is, or where the spread is - you say 'it hasn’t spread to bones or lymph nodes', but you also say it's Stage IV, so it has spread somewhere ... where?

A couple of points, the doctor said 3 months without treatment; but everyone is different so no prediction is set in stone. And as I understand it, this was said in response to suggestion that no active treatment was given? Certainly, the prognosis of stage IV prostate cancer without treatment would be measured in months, not years, and the detail would depend on where the disease has spread.

Similarly, I'm afraid there's no point in comparing PSA levels: PSA is not a reliable indicator, and it's not at all uncommon for advanced disease to show a low PSA, and a non-aggressive, non-advanced one to have a high PSA - not at all uncommon.

I obviously can't guess at the accuracy of the doctor's diagnosis, but for the moment, you'd be wise to work with it and take it seriously - but you can certainly ask for a second opinion, even if it's just from one of the other local oncologists. But don't let your desire for that stand in the way of starting treatment as soon as possible.

.

-- Andrew --

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

User
Posted 19 Oct 2019 at 11:45

Thanks Andrew

Dad is 61, dr has advised it’s stage 4 due to the size of the tumour he doesn’t have a Gleason score and has spread to just outside of the prostate but still within the pelvic area.

Second opinion from the Royal Marsden was the same therefore they won’t transfer Dad’s care over.

 

User
Posted 19 Oct 2019 at 12:03

You still have options. RT may stull be on the table and there are a whole sequence of treatments to follow that. Don’t give up hope.

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User
Posted 19 Oct 2019 at 00:12

Natasha

I’m sorry to read of your dad’s cancer.  Ductal cancer of the prostate is one of the rarer types and certainly something I wouldn’t be able to comment on.  If you haven’t done so already, call the PCUK specialist nurses.  They’re really good and will hopefully be able to answer your questions.

Ulsterman

User
Posted 19 Oct 2019 at 01:02
Ductal prostate cancer is often more aggressive than others and the fact that his PSA is rising suggests that the cancer has already learnt to survive without testosterone. Did he have both testicles removed or just one?

To be honest, I wouldn't waste time waiting for the PSMA scan if it was my dad; the main benefit of PSMA is to identify tiny clusters of cancer when there has been a recurrence after radical treatment, which simply does not apply to your dad.

How soon could they start the chemo? If he has been castrated, the hormone I presume he is on will be enzalutimide, abiraterone or bicalutimide? If abi or enza fail he won't have many other options but if he is currently on bicalutimde there is still abi or enza in the bag. Chemo can make the hormone treatments more effective.

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

User
Posted 19 Oct 2019 at 07:02

Thanks Ulsterman

I did speak to a lovely nurse and she explained there are lots of options so that did reassure me somewhat, fingers crossed Dads treatment starts soon and we can go from there. 

User
Posted 19 Oct 2019 at 07:17

Hi Lyneyre

Thanks for the reply, Dad only had one testicle removed back in March as first thought was testicular cancer and I have the consultants letter that at that time the prostate felt ok then after further investigation he was diagnosed with prostate cancer in May then he started the hormone therapy but has only had the one type as far as I am aware apologies I will find out which one it is.

We are just so shocked about the whole 3 months prognosis with no treatment when a) it hasn’t spread to bones or lymph nodes b) Dad feels the same as he always does, I’ve also been reading other men’s stories and with higher PSA levels than my Dads and are still with us 5 years plus it just doesn’t make any sense to me, has the Doctor got it wrong I know  they can’t play god but anyone I have spoken to since that has a medical background seems to think that’s awfully harsh of him to say that, I spoke to one of the lovely specialist nurses and she was also bemused that the doctor had said that as there are other options way before it’s his time :( 

thanks for the advice about the PSMA scan, DR did say by looking at the MRI it hasn’t spread so he wanted the PSMA scan to be sure so I did think that was strange he wanted him to have this scan.

his treatment was supposed to start in 3-4 weeks and that was just over 2 weeks ago we saw the consultant but he is still waiting for the PSMA, the consultants secretary got back to me yesterday and advised DR wasn’t happy Dad is having to wait so long and she has got onto the scanner centre now too so fingers crossed we may hear something next week then Dads treatment can start the following week they mentioned Taxitere (unsure of spelling) or Platinum chemo. 

User
Posted 19 Oct 2019 at 10:21

You don't say how old your father is, or where the spread is - you say 'it hasn’t spread to bones or lymph nodes', but you also say it's Stage IV, so it has spread somewhere ... where?

A couple of points, the doctor said 3 months without treatment; but everyone is different so no prediction is set in stone. And as I understand it, this was said in response to suggestion that no active treatment was given? Certainly, the prognosis of stage IV prostate cancer without treatment would be measured in months, not years, and the detail would depend on where the disease has spread.

Similarly, I'm afraid there's no point in comparing PSA levels: PSA is not a reliable indicator, and it's not at all uncommon for advanced disease to show a low PSA, and a non-aggressive, non-advanced one to have a high PSA - not at all uncommon.

I obviously can't guess at the accuracy of the doctor's diagnosis, but for the moment, you'd be wise to work with it and take it seriously - but you can certainly ask for a second opinion, even if it's just from one of the other local oncologists. But don't let your desire for that stand in the way of starting treatment as soon as possible.

.

-- Andrew --

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

User
Posted 19 Oct 2019 at 11:45

Thanks Andrew

Dad is 61, dr has advised it’s stage 4 due to the size of the tumour he doesn’t have a Gleason score and has spread to just outside of the prostate but still within the pelvic area.

Second opinion from the Royal Marsden was the same therefore they won’t transfer Dad’s care over.

 

User
Posted 19 Oct 2019 at 12:03

You still have options. RT may stull be on the table and there are a whole sequence of treatments to follow that. Don’t give up hope.

User
Posted 19 Oct 2019 at 14:17

Originally Posted by: Online Community Member
stage 4 due to the size of the tumour
... which, with treatment gives a very high chance of a minimum 5 year survival. Caveat again, that we're all unique, and there's a lot of variation. 
Sorry, another question; the PSA fell with hormones, then started to rise again - that was with tablets? Has he started hormones by injection yet (usually monthly, then 3-monthly)?

Weirdly, many people with prostate cancer have no symptoms, even with quite advanced disease; arguably those that do are lucky because it sends them to a doctor! While stage IV disease does need treating, a very large minority of people with PCa at an earlier stage can postpone starting treatment, often for years. Those of us where it's advanced or aggressive (or both) don't have that option. But, as others have said, there's plenty of other options.

.

-- Andrew --

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

User
Posted 19 Oct 2019 at 14:51

He started the hormone injections in May then had another injection in August, August appt went well with Consultant as PSA had come down and the proposed treatment plan was radiotherapy but as PSA has now increased he wants to go down the chemo route, mum asked the consultant was there another type of hormone treatment Dad could have before chemo and he said no which we were confused as we know there are other types, just had a look at the notes from the last meeting and Dr advised PSMA for re-staging. 

The appointment was very rushed and uninformative I have emailed the consultants secretary and asked to speak to him again to go through some unanswered questions even if it has to be on a private basis so we get longer.

Thank you for your advice. 

 

User
Posted 19 Oct 2019 at 15:00
Guys, it is all very well putting a positive spin on things but we also need to be realistic in our responses.

Natasha, your dad is stage 4 because he has mets in one or both testicles. Mets are mets, it isn't that bone or lymph is worse than anywhere else. If the cancer has moved to other identified places then it may also be in places that have not yet been identified which is why the onco wants a more detailed scan. Ductal cancer is more aggressive than adenocarcinoma and usually produces less PSA so your dad's very high readings mean that he may have some ductal mixed in with normal cancer. Ductal cancer does not always respond well to hormone treatment and your dad's recent rise suggests that he has become castrate resistant already - this is a significant concern and makes predictions of 5 or 10 years rather optimistic. Ductal cancer often responds well to taxotere (docetaxel) but also to carboplatin and it may be that the doctors will suggest adding an extra hormone treatment to his existing one.

When you see the onco you could ask whether this is pure ductal or ductal mixed with adenocarcinoma; this will help you understand how reliable the PSA is going to be as an indicator of disease control.

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

User
Posted 19 Oct 2019 at 15:10

Thanks Lyn

I have just been through all of letters and it only states prostate carcinoma clinically T4 N0 288cc gland PSA density 0.4 it was the cancer nurse that told Dad it was Ductal but strange it doesn’t say that on any of the notes.

I am hoping to speak with the onco next week so I will ask all the questions.

 

User
Posted 19 Oct 2019 at 15:46

Dad’s hormone injection is Goserelin (zoladex)

User
Posted 19 Oct 2019 at 16:44

Originally Posted by: Online Community Member

Thanks Lyn

I have just been through all of letters and it only states prostate carcinoma clinically T4 N0 288cc gland PSA density 0.4 it was the cancer nurse that told Dad it was Ductal but strange it doesn’t say that on any of the notes.

I am hoping to speak with the onco next week so I will ask all the questions.

 

Maybe the nurse made a mistake - that would make more sense of his PSA. I think I would ask whether they now consider the cancer to be castrate resistant and whether they are going to add abiraterone or enzalutimide. If not, why not? 

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

User
Posted 23 Oct 2019 at 21:45

Just an update we are still no further forward.

PSMA scan is a 4-6 week wait so secretary is speaking to the doctor to see what the next step is I have asked 3 times can I speak to or see doctor as Dad is really down in the dumps he feels they are just leaving him to die especially after the Docs comment about 3 months to live with no treatment it’s 3 weeks tomorrow we last saw the Dr and nothing no appointments no plan just nothing.

I have got onto PALS to see if they can help but really losing faith in Mount Vernon and now with Royal Marsden refusing to transfer Dads care we really don’t know where to turn no one is giving us any answers :( 

User
Posted 23 Oct 2019 at 23:49

When you say your dad has "other health issues" what do you mean? If they are advising that chemo could be too risky it could be these other health issues that are ruling out other treatments as well. If he has heart problems that could be making them reluctant to give Enzo or ABI.

User
Posted 24 Oct 2019 at 07:28

Hi Kita

He has an irregular heartbeat and is on warfarin, he’s also type 2 diabetic and takes medication for high blood pressure so quite a few other medical issues which I understands would effect which treatment he has, the main issue is no one has explained anything or the reasons why or answered any of our questions.

thanks 

 
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