I am now in a position where I will need further salvage treatment as HIFU cannot treat PCa that has gone to bone or as in my case tissue away from the Prostate. It might be possible to use Nanoknife for the latter and it has certainly been used to treat cancer within the Prostate but I have not been able to find anyone in the UK or Germany that will treat Noads this way.
UCLH recommended I start HT but I wish to treat this more aggressively and contacted the Marsden who has referred me to UCLH for HIFU. I mentioned this to my doctor at the Marsden and he said that they had treated people in a similar position to me by stripping out affected nodes or using RT including Cyberknife. I was advised NOT to start HT, at least before a consultation with the Marsden on 23rd September. (In retrospect, I should have asked why I should not have started the HT which at least would perhaps help stop further spread, at least for a time.) My doctor said he would get scans and details from the UCLH.
Meanwhile, I contacted the Hospital in Heidelberg where I had RT back in 2008. I asked if they would treat my Noad involvement with Proton Beam. They said they would only use Proton Beam as a boost to IMRT and provided the affected Node was in the pelvic area, also provided that scans checked out. Furthermore they would expect me to have HT for 3 years- the latter I would hope to avoid. I
I have obtained copies of the written report on my biopsy and scans and now await a disc showing the scans. I am considering sending this to a dedicated Proton Beam facility in Europe for a view and possible treatment. By the time of my Marsden appointment on 23rd September, I should be in a position to know all my options. My only concern about going outside the NHS again is would the Marsden continue to monitor/treat me as necessary thereafter? They were a bit miffed when I chose to have RT in Heidelberg rather than at the Marsden.
Barry |
User
Just noticed that nobody has commented Barry.
I have no knowledge regarding your preferred treatment but I hope somebody else can reply to you.
I can see that The Marsden would be miffed, it may appear to them that you're saying they aren't good enough (I know that's not the case - more they aren't supplying what you want) but this is your life and you are doing all you can to make sure you get the best treatment. If you have to tread on a few toes then so be it.
Good luck with it all. Your journey trying to get the nanoknife and proton beam will no doubt help others in the future
All the best
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Barry,
I'm sorry you need further salvage treatment, but I continue to have faith in your choices.
From day one, you have thought 'outside the box' and took some bold decisions on getting the treatment YOU feel is best for YOU, wherever you have had to travel, not just agreeing to whatever your local hospital has suggested.
Good luck in getting the answers you want and in starting on a new path as soon as possible.
And please keep sending in these updates.
All the best to you and Barbara,
George
|
User
Hi Barry,
I agree with what George has just said, I also think that you are always looking to stretch the boundaries, and why not Barry it is your life,
I agree with you perhaps you should have asked / or started on HT to slow the bugger down,
Please keep us all informed, and good luck
Barry
Edited by member 23 Aug 2015 at 20:31
| Reason: Not specified
User
Hi Barry
I understand your concerns regarding the possibility of burning your bridges, my thoughts are that you have to do what is necessary to give you the best outcome, but don't burn those bridges until you have built another if you get my drift, I'm sure they understand that if they are not in a position to offer the treatment due to lack of machinery or resources then you aren't questioning their expertise. As regards the hormones, I hated going back onto them, but with a doubling time of 6 weeks it was a no brainer once the scans were completed, as in my view they had all the information they needed to plan any treatment so I needed to put the brakes on whilst I looked at my options, the only reason I can see to refrain from HT is to see if the treatment has worked without the hormones skewing the results, so I chose Casodex 150mg as this has a very short half life, so I can assess whether the treatment has worked quicker.
Good Luck
Roy
Edited by member 23 Aug 2015 at 22:55
| Reason: Not specified
User
Hi Barry
I am pretty sure you have looked at this,
Radiofrequency ablation (RFA) targets the cancerous tumor through a minimally invasive localized procedure. Some prostate cancer patients have used radiofrequency ablation for recurrent prostate cancer or to diminish pain when the tumor has metastasized to the bone or soft tissue. This procedure is typically done when other prostate cancer treatments have failed. Many patients see RFA as a safer and more cost-effective option than alternative local treatment
Cheers Barry