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Confused about treatment

User
Posted 15 Jun 2018 at 21:21

Hi It has been a long time since I've posted on here but I am forever lurking on the Prostate Cancer Community site.  This seems to be one of the very few sites that give knoweledgeable  and trustworthy advice and support and I would be grateful for your opinions about our current situation.

 

My husband was diagnosed with Prostate Cancer in June 201 aged 59. PSA in May 2016 was 205. Biopsy results Gleason 9 - bone scan showed mets in hips, ribs and pelvis. Started Prostap beginning of July after initial Biculutamide. CT scan performed in July 2016 but never had official results from that. Our Oncologist said he would get the Radiologist onto this asap in our August 2016, but nothing else was ever confirmed. We were told by the Oncologist that he looked too well for the cancer to be in any organs or soft tissues and from what he could see of the scan online all areas were clear, except the lymph nodes looked swollen. On subsequent appointments when I questioned the CT results ' Is it in the lymph nodes'? we were told ' Well with the original high PSA and the Gleason score I would say yes'. This answer was only provided when I pressed the question and nothing was confirmed. He started 6 sessions of Docetaxel in September 2016 until the beginning of 2017 and PSA results stayed really low until Dec 17 when it had reason to 0.5.

Fast forward to Feb 2018 and and PSA had gone up to 2.7   - we were told he had probably become castrate resistant and the plan going forward was to do a nuclear bone scan and a CT scan to see if/what was going on, then potentially radiotherapy to 'zap any hot spots' and Abiraterone was mentioned, but 'lets get the scan results first to see'  CT scan was done in March and then we waited for a bone scan but nothing came through for an appt for this despite contacting the oncologist s secretary who just said she would chase it up. We were eventually told after several weeks the the radiologist had denied the bone scan as there was 'no justification for this' At our next oncologist appt soon after ( we saw a different dr)  we were shown the CT scan which showed that the lymph nodes were much smaller - infact almost invisible  - and the bone lesions showed 'significant improvement and they were healing themselves' We were told that a bone scan at this point would only confuse issues as it would show activity that was actually healing. Plan to carry on with more frequent apps and blood tests with a view to Abiraterone fairly soon (still on Prostap)

 

Next appt in April  PSA had risen to 7 and ALP also higher. Oncologist advised again Abiraterone and also ? PSMA/PMSA test (can't remember which way round) I thought to myself then that it would be a miracle if that actually happened - I was not at this appt but hubby said he  sent the e-mail to the radiologist there and then - the same radiologist who refused the bone scan a month or 2 earlier. We waited  - I tried to be patient but it was weeks before we were told that the Radiologist had denied the request  - was not surprised in the least! When we spoke to the Oncologist very shortly after this  we were told It wouldn't make any difference to the outcome - and the PSA since the 7 reading had again risen sharply  - Abiraterone asap

 

Yesterday 14th June, we had an appt with the nurse specialist to start Abiraterone and because I couldn't be at the appt  the previous week I asked her ( grilled her really)  why we couldn't have a more detailed imaging scan to find out what was going on. The CT scan had showed vast improvement, but the PSA is rising sharply, and  how can a Radiologist who only has access to scans, override the Oncologist who has access to PSA ALP and everything else, and see's hubby on a regular basis. She said she didn't know why  - only that the communication was done electronically. I did lose it a bit - I wanted to know why we couldn't have a more accurate scan to define where any possible spread was. Why couldn't our Onco give any reason other than ' It won't make any difference to the outcome'  Surely It's important to try and pinpoint where any spread may be coming from. He did say probable flare up in the bone somewhere - but we need to try and define where in the bone?

 

I have tried to deal with the whole thing holistically. I am aware of how he is in himself constantly. He's eating as normal. He's weeing literally ' like a horse' . Yes, some aches and pains but nothing specific or severe and in various areas. I put that down to Prostrap and muscle loss and maybe some chemo effects still continuing. He is also taking a high organic dose of quality CBD oil. I really, really have no idea if this is helping the cancer, or ? skewing PSA tests, but it certainly helps us to think we are doing something. However, today he has taken the first Abiraterone tablet, and Prednisolone - I hated him taking Prednisolone when on chemo. Ultimately of course I want the best for him and Abiraterone is probably the best way to go, but I want him to have further scans to see what is going on and to try and pin down what is causing the rise in PSA. Should we try and get an mp MRI privately? or even a PSMA test privately?

I apologise for the length of this e-mail. I know my going on and on must be really boring, but I am currently banging my head against a brick wall whenever I speak to the Oncologist and It's driving me mad. You all seem so knowledgeable and I would love  you lovely people to here to maybe see the situation from a different perspective

Again huge apologies for the book I have tried to write!

 

Regards

Ruth

 

 

 

User
Posted 15 Jun 2018 at 21:21

Hi It has been a long time since I've posted on here but I am forever lurking on the Prostate Cancer Community site.  This seems to be one of the very few sites that give knoweledgeable  and trustworthy advice and support and I would be grateful for your opinions about our current situation.

 

My husband was diagnosed with Prostate Cancer in June 201 aged 59. PSA in May 2016 was 205. Biopsy results Gleason 9 - bone scan showed mets in hips, ribs and pelvis. Started Prostap beginning of July after initial Biculutamide. CT scan performed in July 2016 but never had official results from that. Our Oncologist said he would get the Radiologist onto this asap in our August 2016, but nothing else was ever confirmed. We were told by the Oncologist that he looked too well for the cancer to be in any organs or soft tissues and from what he could see of the scan online all areas were clear, except the lymph nodes looked swollen. On subsequent appointments when I questioned the CT results ' Is it in the lymph nodes'? we were told ' Well with the original high PSA and the Gleason score I would say yes'. This answer was only provided when I pressed the question and nothing was confirmed. He started 6 sessions of Docetaxel in September 2016 until the beginning of 2017 and PSA results stayed really low until Dec 17 when it had reason to 0.5.

Fast forward to Feb 2018 and and PSA had gone up to 2.7   - we were told he had probably become castrate resistant and the plan going forward was to do a nuclear bone scan and a CT scan to see if/what was going on, then potentially radiotherapy to 'zap any hot spots' and Abiraterone was mentioned, but 'lets get the scan results first to see'  CT scan was done in March and then we waited for a bone scan but nothing came through for an appt for this despite contacting the oncologist s secretary who just said she would chase it up. We were eventually told after several weeks the the radiologist had denied the bone scan as there was 'no justification for this' At our next oncologist appt soon after ( we saw a different dr)  we were shown the CT scan which showed that the lymph nodes were much smaller - infact almost invisible  - and the bone lesions showed 'significant improvement and they were healing themselves' We were told that a bone scan at this point would only confuse issues as it would show activity that was actually healing. Plan to carry on with more frequent apps and blood tests with a view to Abiraterone fairly soon (still on Prostap)

 

Next appt in April  PSA had risen to 7 and ALP also higher. Oncologist advised again Abiraterone and also ? PSMA/PMSA test (can't remember which way round) I thought to myself then that it would be a miracle if that actually happened - I was not at this appt but hubby said he  sent the e-mail to the radiologist there and then - the same radiologist who refused the bone scan a month or 2 earlier. We waited  - I tried to be patient but it was weeks before we were told that the Radiologist had denied the request  - was not surprised in the least! When we spoke to the Oncologist very shortly after this  we were told It wouldn't make any difference to the outcome - and the PSA since the 7 reading had again risen sharply  - Abiraterone asap

 

Yesterday 14th June, we had an appt with the nurse specialist to start Abiraterone and because I couldn't be at the appt  the previous week I asked her ( grilled her really)  why we couldn't have a more detailed imaging scan to find out what was going on. The CT scan had showed vast improvement, but the PSA is rising sharply, and  how can a Radiologist who only has access to scans, override the Oncologist who has access to PSA ALP and everything else, and see's hubby on a regular basis. She said she didn't know why  - only that the communication was done electronically. I did lose it a bit - I wanted to know why we couldn't have a more accurate scan to define where any possible spread was. Why couldn't our Onco give any reason other than ' It won't make any difference to the outcome'  Surely It's important to try and pinpoint where any spread may be coming from. He did say probable flare up in the bone somewhere - but we need to try and define where in the bone?

 

I have tried to deal with the whole thing holistically. I am aware of how he is in himself constantly. He's eating as normal. He's weeing literally ' like a horse' . Yes, some aches and pains but nothing specific or severe and in various areas. I put that down to Prostrap and muscle loss and maybe some chemo effects still continuing. He is also taking a high organic dose of quality CBD oil. I really, really have no idea if this is helping the cancer, or ? skewing PSA tests, but it certainly helps us to think we are doing something. However, today he has taken the first Abiraterone tablet, and Prednisolone - I hated him taking Prednisolone when on chemo. Ultimately of course I want the best for him and Abiraterone is probably the best way to go, but I want him to have further scans to see what is going on and to try and pin down what is causing the rise in PSA. Should we try and get an mp MRI privately? or even a PSMA test privately?

I apologise for the length of this e-mail. I know my going on and on must be really boring, but I am currently banging my head against a brick wall whenever I speak to the Oncologist and It's driving me mad. You all seem so knowledgeable and I would love  you lovely people to here to maybe see the situation from a different perspective

Again huge apologies for the book I have tried to write!

 

Regards

Ruth

 

 

 

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User
Posted 16 Jun 2018 at 01:50
I really feel for you. Whereabouts in the UK are you? I think I would be tempted to contact PALS and also ask for a referral to an oncologist at another hospital for a second opinion; as you know, you have a right to do so. You may not need to go private, just different.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jun 2018 at 07:39

Unfortunately your experience is I believe common in the NHS which seems to have both excellence and incompetence in equal measures.

In your case the ONC and radiologist can't both be correct  and their inability to achieve a consensus will naturally reduce your confidence in the team looking after your fella.

So get a second opinion, keep up to date on here and elsewhere and finally, armed with that info be sure to stay proactive..

 

 

User
Posted 16 Jun 2018 at 08:51

I totally agree with Lynn

 it I would go further. I think your husbands has been treated appallingly. Lack of duty of care and an unprofessional conduct.  I won’t just go through everything that you have written because it all seems wrong to me I would do what Lynn suggests and go straight to the local patient liaison team and make your dissatisfaction known to them. I also strongly agree with going to another hospital because when I found out I was going to be treated at Bristol which is a fair drive away from me and awkward to get to I was given the option of going to another hospital that was closer but in the end I opted to stay with my local hospital as my treatment was very good

User
Posted 16 Jun 2018 at 13:11
Thanks for your replies. I am really grateful for your opinions. I was starting to wonder if it was me being unreasonable. My son had already taken the refusal of scans problem to PALS, and this resulted in a long phone conversation yesterday daytime with the Radiologist. The Radiologist told him the bone scan was pointless after the CT scan because it would show activity, when that activity was actual healing. He then went on to say that the PSMA scan involved a lot of radiation and it was better not to have this done.

As I said this came about because of a referral to PAL's my son had made and not myself. He said he sounded very informed and took the time to answer his questions and he also mentioned other imaging/ scans available. I think the radiologist blinded my son with science actually! When I asked him last night about the phone conversation, he was a bit preoccupied with other things, and was in a rush to get ready to go out. Hubby as the patient was a bit emotional. ' Can't we just have a normal conversation' - probably the hormones - and he had taken his first Abiraterone pills in the morning!

I think I will take the PAL's referral further now. I don't think my son's complaint included anything else other than the scan's refusals. I want it to include the Oncologist (that's where all my angst is directed) Why did he even refer him for a PSMA scan? I just knew it would be refused. Was it just to appear to be pro-active to my hubby and son at the time? who knows. I couldn't be at that appointment. There have been so many discrepancies along this whole journey I could write another very boring book. I have even now noticed that the copies of the letters to the gp have stopped coming to us since I just mentioned that in passing in a conversation with the Onc ( they stated what the plans going forward were which never appear to come to fruition - am I being paranoid?) I am thinking the whole thing appears to be a farce by pretending to care whilst following all the correct guidelines - but anything extra like a detailed and accessible scan ? MRI will not be given due to the cost. This is something that is mentioned at most Oncologist appointments. Apparently a monthly course of Abiraterone costs £3000 - but that funding has been approved!

Thank you again. I so need your unbiased advice and opinions. I hate to complain but I have become so sceptical of everything we are being told and that is not really in my nature. What concerns me a lot also is that other people in hubby's situation could follow the treatment without any argument and trust the oncologist completely which may not be in their best interests

Regards

Ruth

User
Posted 16 Jun 2018 at 13:24

It is so apparent that the quality of care you get depends upon where you live.

 Once I had my PSA reading of 38 I was in to see a Urologist within a week, the next day I had detailed Prostate MRI, then in 3 weeks I had a very accurate trans perineal biopsy procedure. Once that came back with a high Gleason score I was sent for bone scan, CT scan in quick  succession to see if I had any Metastasis. Even after this I had a further 2 MRI scans to double check unclear possible issues.

I went straight onto hormone therapy within 6 weeks of first diagnosis and have my review next week where I will see if I am responding well enough to start radiotherapy mid July.

this is the sort of treatment timeline I would expect from my NHS Hospital and I am grateful beyond words for the level of care I have had.

every case is different especially if there are Metastasis issues, at all times my Oncologist was sending me very quick for scans and therapy and all she was interested in was getting me on to curative pathway as soon as possible 

please don’t give up, I think you have not been treated well

Edited by member 16 Jun 2018 at 13:26  | Reason: Spelling correction

User
Posted 16 Jun 2018 at 13:27
I think the comment about a bone scan being unreliable because it would also show repair work as activity is true to an extent - the scan cannot differentiate between bone tumour and bone repair. However, it should show any new mets; the question would be 'would it change the treatment plan' to which the answer is probably 'no' - they have already recognised that he has become castrate resistant and they don't need a scan to confirm it.

So on the one hand, I think the radiologist is telling you the truth, and actually has a basis for his / her stance. My issue would be the total loss of confidence in the oncologist. Pursue it and don't doubt yourself.

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

User
Posted 16 Jun 2018 at 16:48

I think the comment about a bone scan being unreliable because it would also show repair work as activity is true to an extent - the scan cannot differentiate between bone tumour and bone repair. However, it should show any new mets; the question would be 'would it change the treatment plan' to which the answer is probably 'no' - they have already recognised that he has become castrate resistant and they don't need a scan to confirm it. So on the one hand, I think the radiologist is telling you the truth, and actually has a basis for his / her stance. My issue would be the total loss of confidence in the oncologist. Pursue it and don't doubt yourself

 

I agree Lyn  and we do agree Abiraterone is the correct treatment for him now. However, we were told that the scans could define where the progression was and we could monitor it from there. Since diagnosis 2 years ago he has had just 2 CT scans and 1 bone scan. We know he has mets so It's not as if they have to do lots of scans and tests to confirm this, but surely It's still important to monitor any change with what is already there

 

 

 

 
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