After Prof. Peter Hoskin team consultant visit today Sep 20. 24, Leuprolide injection and bicalutamide were recommended for 6 months before 20 IMRT sessions somewhere in Jan 25, continuing with ADT for up to 2-3 years, but needs monitoring and adjusted accordinglyAfter that, brachy boost was recommended as optional.
A clinical trial of 5 SBRT sessions were offered as alternative option to the IMRT.
I've requested relugolix instead for ADT, but the doctor gave me a bunch of silly excuses as to why it was the same as the other one ( which I know it is not, the other one is an agonist so you get testo flare up) and tried very hard to convince me. Of course, the harder she tried, the lesser convincing that was happening.
Relugolix is now mandated by NICE in the UK for locally advanced hormone sensitive PC, as of 14th August 2024. So the NHS must ensure that it is being offered as an option. Maybe she didn't know this, in which case is excusable, but if she did know, it would be a serious contravention, I wonder what her boss Prof. Hoskin would think of that. Also she was trying to point out I was delaying the start of treatment because I wanted relugolix, but this after they cancelled 4 PSMA scan appointments already, so I let her know that someone else was delaying treatment instead.
Anyway I'm escalating this to the right levels and will get relugolix next week.
Oh, also they didn't have the results from the test I took last Tuesday , so the latest PSA reading is from May, and neither did they have the PSMA results/images. Very frustrating.
I will need to find a different team as I don't trust her, although the lead nurse was such lovely person. She was smiling by the end of the visit, unlike Dr Grumpy.
Anyway, I've been told it could be cured, we'll see.
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Hotoneii
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Glad you are not my oncologist. After 3 years excellent advanced cancer treatment including prostap (leuprorelin) injections I have nothing but praise for my NHS team. Sounds like you either misunderstood the medicine or deliberately misinform in your note. I am now progressing to Radium 223 so getting near the end. NHS in UK is brilliant despite conditions staff have been forced to work under. If you don't like or trust your team then feel free to go elsewhere but please do not try to unfairly criticise an excellent team. If your other details are correct then you are causing problems for nothing and probably taking up time of an experienced consultant that could be better spent on a patient who would benefit a lot more from their finite time. Please recheck your facts.
Looks like you either didn't read my post or your meds haven't kicked in yet. If you don't like what I wrote, that's tough! It was my experience and I will not change it just because you and/or countless others had a much positive one. I was grossly misinformed and led to believe that if I didn't choose the only option I was presented with, my treatment would be delayed. Well, I do not agree with that, as I happen to be aware of the other options, as well as the obligations of the NHS to follow and implement NICE advice. They don't get to choose on that.
The other bit was trying to convince me that relugolix was exactly the same as the lupron shots, which is nonsense. There is a good reason (s) NICE arrived at their conclusion to make sure patients are aware of it being available. It is much better tolerated, which means less visits to the hospitals, and the intended outcome is achieved much sooner, as well as getting back to normal when discontinued.
So yes, I choose not to take the medicine that's being used since 1987 (even if it works) and want the more recent instead.
And lastly, don't be mandating other people what and what not to write on their posts. Everything I wrote is my experience as it happened and I will be more than happy to update it, shall it get rectified.
People have the right to be offered the right options and not be bullied around.
Nothing bad has been said about the team as a whole.
I understood you to say you need to find a different team? Were they not your words? If you feel I was mandating what you can say then I apologise. I never try and "mandate" anyone but, notice you like to use that word. You can choose any available treatment option or none as you wish. NICE offer options and understanding the different outcomes of choosing an option is not always easy. My understanding is that NICE allow your option subject to your oncologist recommending it as better in your situation than the current alternative. I do not know your situation as I am not an oncologist although your report suggested that is not their recommendation. Feel free to notify your choices but try not to justify them on the basis of NICE "mandating"?
Obviously it seems that what I wrote still didn't get through.What I have is locally advanced prostate cancer. NICE recommendations are to be implemented, I didn't just come up with that, it is written in the publication of August 14th as well as all the others. Meaning it is not a choice, they are to be followed by the NHS when those conditions are met.
The publication very clearly states that patients under this category must be informed of the choices. Not only was I not informed, but was advised to take the other treatment under the excuse of delaying start of treatment.
If the doctor thinks relugolix is not adequate, at the very least, a reason should be given if requested. The reasons I was given were all against NICE recomendations, notwithstanding the fact that she was unaware of them being published to begin with.
So, again, I will not take 2 drugs from 1987, (lupron and bicalutamide) when a single more recent arguably better one is recomended and should be available to patients without having to go through all the drama.
I now understand the recommendation of a retired MD on a previous post: Listen to the advice, take it home and make a decision when ready. Very glad I didn't make it the other day, as having been through many hard sales in the past, this one felt no different. I am quite happy to update my post the moment the above issues are resolved
Agreed, the publication says they have 90 days to implement it. My issue is not with that, I am not asking to change their procedures, just to make the patients aware that new options are available in due time. And also to make them aware that an agonist and an antagonist work in different ways although the outcome might be similar. Incidentaly, this development has been commented on LBC in the past few weeks, so more and more people are becoming aware
Just because I don't agree with you does not mean I do not understand what you have written. If to "get through" means I have to agree with you then I would interpret that as you attempting to bully me! I do not feel that is your intention but I do ask you to please tone down your rhetoric. We all receive news we would rather not. My position is nearing the end of current treatment options and prognosis whereas you appear to be very much at an early stage. I would not wish to swap positions with you and wish you successful treatment and if possible a cure. I have had very good treatment to date and although I know treatment recommenations have changed I still feel very grateful for mine to date. You appear to be getting your preferred treatment. I am sure your oncologist listens better than me to your concerns. They generally want to work with us as much as we want to work with them. You can request a change of oncologist for many reasons without needing to criticise them. Sometimes they find it difficult to listen and explain in ways we might understand. Give them and me a chance. They are under enormous pressures just as we are often stressed out by an unwanted diagnosis.
Reading this whole thread in retrospect I will admit there was a big overeaction on my part.It is frustrating though to know that other patients, probably less inquisitive, could not be getting the benefit to choose potentially more advanced treatments.
There are many fellow travellers on these forums who thought they've exhausted their options in the past and yet years later still going strong with novel treatments and creative strategies from their teams, so you might just want to hang in there. Science is full of surprises.
Thanks. I agree we need to keep going but also be realistic and accept the situation. My situation has never had any hopeful path but has been Very good from palliative point of view. This is far better than I originally expected. I have had over 3 good years and only now feel deterioration which I have always expected. Xofigo might still give me a few more good months. The earlier detected the more chance you have of science improvements and probable cure. So keep going and try and be positive. Enjoy each day. I hope for the best but still expect the worst as it gets me through.
Hello again. I thought it might help if I explained how my last oncologist appointment almost went to plan. We discussed cabazitaxel and Xofigo. After Docetaxel these were my likely next options. Something led me to raise the question "are we looking at one followed by the other?". That was what I had been expecting and the. order would be Cabazitaxel followed by Xofigo. When the response was, we probably don't have time for both, I was quite relieved. Cabazitaxel was probably going to be harsh but effective. Not in line with my aim of making the most of remaining time with our 5 year old grandson. Xofigo it would be. I have had definite aims of my treatment from the start and that was to enjoy life with our grandson wherever possible for as long as possible. I have succeeded to date and am very grateful. I hope you are as successful with your chosen aims. Good luck and best wishes.
That's very nice to hear, having the confidence to choose your preferred options and a supportive team by your side, as well as peace of mind about the decisions taken to date, really remarkable. In my case, I am still a provider for my family and this whole event is being a bit challenging at the moment to say the least, in case anyone didn't notice, lol. But I did get some phone calls from Mt Vernon and apparently my request is being discussed, which was nice to hear, will have to wait and see. I will update my original post once the dust is settled. Thank you for your message of encouragement, best of luck and enjoy the company of your loved ones.
My previous post was very dramatic. I have lived in your country for a long time, have 3 grown American born children from my first marriage. In my experience, if you have a good job and pay for your own insurance, which I did (blue cross/ blue shield back in the day) the level and standard of coverage would be equivalent to that of the UK NHS. The reason you hear these stories is because the UK public healthcare is regulated by a body NICE) that evaluates how cost effective each new medication/procedure is, and whether implementing it would give any benefit to the patient or not over the current standard. When reading through their recommendations and survival rates, it is clear that the SoC is pretty much the same as in the US, except perhaps for the newest drugs which must go first through evaluation periods overhere. In fact, I asked this forum for opinions on my previous post, and what I was prescribed is exactly what some US posters advised. When I've used the US medical system in the past, I sometimes had the same to and fro with the insurers and doctors, sometimes much worse than this. Other times I had to pay extra, and even threaten litigation, as certain medications and procedures they were trying to avoid reimbursing even though they were covered.
So in spite of the frustration I had to go through on my last visit, my request is currently being processed, I'm glad that they do listen at the end.
In about 3 months the private insurance from my job will become effective, but I've already checked all their clinics, resources and equipment, and the NHS happens to be superior, as frustating as they might be at times. The hospital I visited have 6 linear accelerators in house plus all the scanners, best senior staff and etc. etc. I did have a clash with a junior doctor, but that doesn't condemn the whole team.
Yes I could get cyber knife or HIFU from private care, but what's the use of that if the long term outcome won't be any better that what the NHS/NICE implements?
So that's my experience from both sides of the pond, it's not all rosy in the US private healthcare system, as some might assume.
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