Hi
I have read through many of the posts on this site and have decided to take the plunge and ask for some specific help as you all seem so knowledgeable and supportive.
I will just copy the bio to give the information and would really appreciate some help with respect to treatment options and how to work with oncologists 😊
Apologies it's so long!!
My husband was diagnosed with advanced non curable cancer in January 2015
PSA 37
Gleason 6 (since questioned as 85% of material necrotic?)
Bone Scan showed extensive spread though pelvic area, possibly spine & shoulder, and knee.
My husband is a runner and it was a knee problem that alerted him to the presence of a lesion which coincided with diagnosis of cancer after pursuing the reason for consistent and severe pain in the perineum. This pain progressed to his coccyx and back during investigations. He prescribed co-codomol.
He was I soon started on HT, first dose Degaralix (not sanctioned for further doses) and he has received 3 monthly doses of Prostap since.
We did considerable research at the time and we were eventually offered Docetaxl alongside the chemo but my husband didn't take it up at this time. The oncologist was happy he go back if wanted to start the chemo or when his PSA started to rise.
We had a great 2 years doing lots of things including a trek in Nepal. The only thing he was unable to do was run due to the lesion in his knee. This was a massive blow to him.
PSA remained low and has done since and, hence, no chemo started.
However, he started to experience pain again in March 2017 which has quickly worsened and despite being advised that this was not cancer pain, as the PSA had not risen (I wish I had found this site earlier), by the end of April it was clear it was. The results of an MRI to investigate the hip and leg pain, which was the main problem, revealed a new and aggressive lesion on his hip.
The oncologist advised a new bone scan and RT to the hip. We were keen to try and identify what was going on as all on the net suggested we were dealing with something that had changed and nowhere was a suggestion that this was anything but bad news.
A difficult consultation ensued where the oncologist felt that my researching the problem and worrying about it was not going to help. He pointed out that this was his job. However, he did agree to CT scans to see if there was any soft tissue involvement and a biopsy of the new lesion. In the meantime, my husband had 5 sessions of radiotherapy on the hip.
The tests took a while but on Monday our fears were confirmed, multiple liver spots and undifferentiated cancer cells probably in the process of transforming to Sarcoma or Small cell. The bone scan showed that the hormone treatment appeared to be keeping other things under control.
My husband had been off his food for over a month or so and, amazingly, stopped drinking any alcohol 3 weeks ago so we knew things were seriously wrong.
The oncologist said that we should consider Docetaxel or possibly a palliative route. He felt other things now not useful, Arbiterone, Enzalutamide or Radium 223 which we had already suspected because of the soft tissue involvement. We asked about plantinum chemo but he didn't think it was indicated.
We had already asked for a referral to The Christie in Manchester for a second opinion and that was scheduled for Wednesday so he suggested we put the info from that session and his information together to decide how to proceed. He said that he would be happy to give us more info if we needed it. I asked about the benefit of the chemo and he said 4 months if usual cancer but less due to nature of this aggressive variant.
He did not give a prognosis and my husband did not ask.
The oncologist at The Christie gave us further elaboration but a very similar interpretation of the results. He was clear that the liver involvement was now life threatening and needed urgent action. He also offered Docetaxel but said he would find out more about adding in platinum as he thought it was happening in the states but may not be well evidenced as yet. He said he would get back to us.
He also advised that being treated 2 hours from home might not be great if problems arose and that Shrewsbury may be best if treatment was similar (40 mins from home). He did not think palliative was a sensible route as my husband is young physiologically (chronologically 68) and has no other problems.
My husband left to decide about chemo, no chemo and where.
In an unfortunate incident we tried to get to see the oncologist in Shrewsbury to follow up his offer of giving us more information on Thursday, but were told by his secretary that we were now technically a patient in Manchester as the Oncologist there was still pursuing the platinum question and wanted to see the biopsy slides. As a result the oncologist here would not see us. This seemed odd as he had offered us help deciding what to do but our protestations fell on deaf ears. I reckon we may have upset him by asking for scans & biopsy. Also, he didn't give advise re who to go for pain etc and we complained to the specialist nurse that we could not get hold of people when we needed them so he may of been aware of this.
Anyhow, we now have to decide on a way forward and whether to push for the platinum addition to the chemo from the outset.
My husband is now of a view that he is in so much pain and so tired from the Medication that chemo couldn't be much worse.
However, he does love going away and would not want to spend the rest of the time he has on chemo.
He is on MST continus 2x20mg and oramorph to supplement with 10mg Amitriptyline at night.
This is high level as he has not taken many drugs in his lifetime but he still has bad episodes of pain breakthrough and is rarely pain free.
I am pretty desperate to know how I can best support him making theses difficult decision.
Sally
Usually very positive but cracking round the edges 😊