Update on 2nd PSE

Hello Johnam

sorry to hear your emotions have been churned up again.

‘palliative care’ should not be mixed up with ‘end of life care’!  My understanding is that palliative care is active treatment to control diseases and prolong life. End of life care is the cessation of this active treatment and the active management of the symptoms ( eg pain, nausea and vomiting etc) to try to make the last days, weeks or months of life as comfortable as possible.

My further understanding is that men with prostate cancer caught earlier enough can be treated ‘with the intention to cure’. If the results show the disease has progressed then they are treated ‘with the intention to control’ it. The intention to cure route is either by surgery or RT and first line HT. the intention to treat route rules out surgery but introduces more therapies.

my own personal, but very real, fear is that of recurrence which will therefor move my husband from intention to cure to intention to treat. However, I know that, if this happens, there are lots of options available to prolong his husband’s life. There are many people posting here on the ‘intention to treat’ journey and their posts about their family activities, holidays, hobbies etc give me lots of inspiration and hope that we have yet more living to do before we meet the grim reaper!

I might have misinterpreted some of the ‘jargon’ but I find comfort in my own interpretation so I hope you do too:) 

Thank you . You do have a great way with words and I really do appreciate your message. 

enjoy your weekend 

Liz & OH 

xx

I am stepping into this with a huge amount of nervousness.

It seems to me that we allow words to take on meaning which cause more emotional response because no one is truly clear about what they mean in a specific case.

In the UK we often use the phrase "palliative care" to mean "end of life care" which is both true and not true. Palliative care must be a part of end-of-life care. However, it also refers to controlling disease.

My own understanding is exactly as Worriedwife  below.

This is where I take things that are slightly too far. I ask you to be aware of my good intentions.

Please see this web page from the World Health Organisation, but not until you have read the further comments below - https://web.archive.org/web/20031004221126/http://www.who.int/cancer/palliative/definition/en/

You will see that it DOES contain references to end-of-life care BUT also pay special attention to these sections quoted below:

• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

I hope that you will see that this can apply to almost any member on this forum. As an example, my oncologist assures me that I am being treated with curative intent. The "intent" part suggests to me that, even if it doesn't work, prostate cancer will have been given a good clobbering which will keep me going for some time.

If you look at the above paragraphs you will see that it could apply to any illness which would be terminal if not treated. I am going to dare to offer a coulple of examples:

• Diabetes
• Heart Failure
• COPD

Each one of these remains potential fatal if not carefully treated, but you can see how each of the above paragraphs can be applied to all of them. Indeed, any chronic long term incurable condition, such as my daughter's CFS, falls within at least two of the paragraphs.

I can't tell you not to worry - lets face it, none of us would be here if we didn't have at least some reason to worry.

What I can tell you, with some confidence, is that, like me, you are not done yet.

My oncologist assured me that, even if the plan she had laid out for me didn't work, she had plenty of other tools in the box.

I am holding her to that, and see no reason why it doesn't apply to you as well.

Hi Steve, thank you but please don’t be nervous with your message   . Before I retired I worked with with life shortening prognoses  for over 30 years But when it’s your own you just melt  and crash and I certainly did . I have a journal that I keep updated due to our previous experiences with the urology team as we had been given the wrong information  they denied but   They must have forgotten they wrote it on the back of the biopsy paperwork so we wouldn’t forget . I must say the Oncology team  ( met the oncologist for the 1st time 18th July)  so far have been most helpful as the nurses keep in touch by phone . Tbh I think the long wait from March to July has caused the most anxiety to see any form of doctor. Just need to get the head into a different zone . Thank you for  post it’s much appreciated . Liz & OH XX

Hello Liz.

WW has given you a good explanation as usual. The 6 x 1 week sessions are usually 5 or 6 Gy per session with a total dose of 30/36 Gy whereas standard EBRT is is normally 2/2.5/3 Gy per session over a longer period. There is also a shorter protocol of 6 x 6 Gy given on alternate days which is given with the intent to cure so the palliative treatment can also be very effective. Dafna's husband jacobanddafna has recently undergone this palliative radiotherapy to the prostate and I will leave it up to her to tell you how he is getting on.

I have found an article on pelvic lymph node radiotherapy which, I think, is saying that the ingual node involvement is rare and difficult to treat. What comes across strongly is that there is considerable variation amongst experts as to the field they will treat when given the same patient information which is not helpful.

https://www.sciencedirect.com/science/article/pii/S0360301623076800

But, I have found another article which suggests that radiotherapy has successfully dealt with ingual lymph node mets from prostate cancer, initially with HT and then separately with targeted radiotherapy. 

It looks as if it is down to the expertise of the radio oncologist and their physicist plus the capability of the machine used.

Hi Liz,

As Alwayshope  mentioned Jacob had the course of 6 weeks 36gy palliative RT. He is fine apart from the normal fatigue which he fights with swimming, fitness and an afternoon nap. PSA dropped to 0.02

Unfortunately, we knew from day one that Jacob is not on curative path but treatment path. Saying that, we accepted the situation and are looking forward to the next years together. The oncologist explained that all the treatment that Jacob is getting is under Palliative. This does not mean Palliative like you go into hospice, far from it. It means, the oncologist explained, is taking care of the PC knowing that it is not curable  but treatable. I hope this makes sense? 

Liz, we are in a good place now. We have been to London for 2 days taking the grandchildren from here to spend time with the grandchild from London. We had a brilliant time. I cannot drive, so Jacob drove hundreds of miles and he was fine. There are hours and even days that this PC bastard completely forgotten. We are optimistic, we are fighting and above all we are living our life. Early September we are going on holiday for 12 days and life is good. 

I am telling you all this just to say that there is life with a treatable PC.

Lots of love

Dafna

Thank you Dafna. If we had not  been told it was curable in June  by the specialist nurse we would be in a better place by now and got to grips that he was on a different pathway .  I don’t know how I would have been without all you wonderful people taking the time to keep my head zone in place albeit it has crumbled quite a few times recently. 

Did Jacob have the gold seeds  & ray pilot device implanted prior to the RT. My OH will not read any literature so it’s left to me to explain what’s happening & when.  

Hopefully by October and our 2nd Oncology meeting we are feeling more positive about life. 

Liz & OH 

XX

Hi J

Sorry to hear about the nodes involvement.

However  it was my understanding that if nearby nodes involved then still treatable and potentially curable.

I would Def try and clarify as this is an important point.

Also could be worth getting a second opinion in this particular case.

I can't remember if he's already started on HT, that would obviously help to hold it back

Best wishes 

Steve 

Hey Steve    Yes he started HT . PSE was 14 

bicalutamide  14th June 

Prostap  25th June 

Aberaterone  18th July 

bloods done 18th July at clinic and it was 7

bloods done 29th July and results given 1st it’s down to 3.1 so it’s going down quite quickly I thinj 

he’s to get another MRI before he is seen by oncologist 10th October and will be advised at that time. 

thanks 

Liz & OH

Hi Liz,

Prior to RT Jacob had a scan where they marked by almost invisible tattoo the targeted area. This was a simple procedure and at that appointment they explained the expected side effects short and long term. All and all it was uncomplicated affair and even the site facilitate free parking which is a first in the Brighton area.

I know exactly how you feel and all this ups and downs but I promise you that sooner than later you will forge a new routine and carry on with life. You will be more relaxed about it and with it. As they said on this community so many times: many men in the street walking about with PC totally unaware and many men die with it rather than from it. You are doing great so do not let this bastard control you. 

Lots of love

Dafna