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post treatment ending...what next?

User
Posted 30 Jan 2021 at 20:58

Just after some advice please.  My husband was diagnosed with inoperable, incurable, advanced Prostate cancer T4 N0 M0  gleason 8  presenting PSA10.8 in jan '18.  It had spread into his bladder as a 2cm tumour and was removed during the TURP procedure.   He then had a bone scan which was clear, a single session of 15Gy brachytherapy and 23 aggressive sessions of 46Gy radiotherapy carried out 14 months ago.    He had his last hormone injection end of November '20  which lasts 'till Feb when it will be 2 years from starting.    His 3 x follow up appointments have been by telephone with a specialist nurse due to covid.   He's 60.  His consultant has now asked to see him in March as his Psa has risen slightly to 0.4ug/L from 0.1 three months ago and his testosterone result has also increased to <0.2     

He appears to be doing OK and remains very positive but does get very tired and  is losing weight but this could be due to his muscle mass decreasing.    I'm just wondering if anyone might know what happens next regarding treatment ?   We have no idea what the next stage is and no scans have been done since his treatment just blood tests.

Appreciate any feedback.   Thanks.

 

 

 

 

User
Posted 31 Jan 2021 at 10:06

Mrs Anxious,

You should have been given a contact for a clinical nurse specialist (maybe a Macmillan nurse). If not, call the oncology department and ask to speak with one to have a chat about your husband's treatment. I think you might be mistaken about him being incurable, because he's been treated as though he's curable, but equally there's other inconsistent information, and it's difficult to know which parts are wrong, and which parts are correct, so I don't want to give you false hope. There are cases where incurable patients have been offered radiotherapy or prostatectomy as a means to extend life, but it's just not clear if this might apply here, and I think HDR Boost is a most unlikely treatment for such a case.

You should absolutely know and understand what treatment path he's on. He may be incurable for some other reason we don't know. The life expectancy given in your original post again looks inconsistent with the rest of the post.

Something else that might help is to contact your local prostate cancer support group and ask for help understanding the letters you've had over the course of his diagnosis and treatment. They might also be able to sit in on a call with a clinical nurse specialist or consultant, to listen and perhaps ask questions on your behalf, and then explain it more clearly afterwards, without the constraint of a 10 minute appointment slot.

User
Posted 31 Jan 2021 at 17:53

Hi anxious, I find it really handy to be copied in on all correspondence between hospital and GP. Remembering all the numbers and letters is not easy, if they are written down it is so much easier. If you are good at computers then using a patient access should allow you to see all the historic letters as well, so you can find the original diagnosis. 

Dave

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User
Posted 31 Jan 2021 at 00:11
There is some confusion about his diagnosis, I think.

With a T4 N0M0 he is not incurable. The treatment path he is on is a curative one, if he was incurable there wouldn't have been an end date on his HT.

With 2 years of HT, brachytherapy and external RT they are hoping that he won't need any more treatment and can get on with his life.

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

User
Posted 31 Jan 2021 at 01:14

His treatment is HDR Boost, exactly the same as mine. This wouldn't be used on someone who's incurable, so as Lyn says, this doesn't make sense.

Also, "his testosterone result has also increased to <0.2" doesn't make sense.

User
Posted 31 Jan 2021 at 01:30

Here is your post from two years ago. It is grade 4 not T4. And local advanced which is actually T3. So it looks like the RT was intended to cure him and hopefully it has. 

Originally Posted by: Online Community Member

My husband (58) has just been diagnosed with having Local Advanced Prostate Cancer following a TURBT 

operation to remove a tumour in his bladder.

 

We were told it's Local Advanced Prostate Cancer, his is an unusual cancer growth which is inoperable, Grade 4, with a Gleason grade 8.   

He is being treated for prostate cancer as the lab report said he has "seeds" in his prostate which grew through

the bladder into a 2cm tumour.    What a shock!   He had his prostate checked in November and results came back clear?????

We asked about life expectancy and was told 1-10 years!!

 

Hubby now has to go for a radioactive bone scan followed by hormone therapy and radiotherapy at Christies.

If cancer has spread into his bones this will be a different ball game all together i'm sure but we have to remain

positive all the same. 

 

Just wondered if anyone out there has a similar experience so we know what to expect

Dave

User
Posted 31 Jan 2021 at 10:06

Mrs Anxious,

You should have been given a contact for a clinical nurse specialist (maybe a Macmillan nurse). If not, call the oncology department and ask to speak with one to have a chat about your husband's treatment. I think you might be mistaken about him being incurable, because he's been treated as though he's curable, but equally there's other inconsistent information, and it's difficult to know which parts are wrong, and which parts are correct, so I don't want to give you false hope. There are cases where incurable patients have been offered radiotherapy or prostatectomy as a means to extend life, but it's just not clear if this might apply here, and I think HDR Boost is a most unlikely treatment for such a case.

You should absolutely know and understand what treatment path he's on. He may be incurable for some other reason we don't know. The life expectancy given in your original post again looks inconsistent with the rest of the post.

Something else that might help is to contact your local prostate cancer support group and ask for help understanding the letters you've had over the course of his diagnosis and treatment. They might also be able to sit in on a call with a clinical nurse specialist or consultant, to listen and perhaps ask questions on your behalf, and then explain it more clearly afterwards, without the constraint of a 10 minute appointment slot.

User
Posted 31 Jan 2021 at 16:04
Thank you for your replies. My information is based on written and verbal communication received from the consultants at the cancer hospital. We'll just have to wait to hear what's next. It's frustrating also that I cannot attend the next appointment with my husband as patients only are allowed access to the hospital due to covid.

User
Posted 31 Jan 2021 at 17:53

Hi anxious, I find it really handy to be copied in on all correspondence between hospital and GP. Remembering all the numbers and letters is not easy, if they are written down it is so much easier. If you are good at computers then using a patient access should allow you to see all the historic letters as well, so you can find the original diagnosis. 

Dave

User
Posted 31 Jan 2021 at 20:59

Probably worth re-reading the letters - T4 is not the same as stage 4.

Now that he has finished his treatment, the testosterone should start to rise and he may start to find it easier to build muscle mass back up. His PSA will probably rise a bit with the return if testosterone; that's normal.

Edited by member 31 Jan 2021 at 21:00  | Reason: Not specified

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

 
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