my dad is dying from cancer and i cant get this issue with his treatment out of my head

[pud1]

my dad has a rare form of cancer. it is called peritoneum metastasis. it is rare as primary cancer and even rarer in men. he was diagnosed on july 1st only 2 months after my mum had passed away from lung cancer so i am pretty raw at the moment.

when he was first diagnosed i did some research. at the time i didnt even know what the peritoneum was ( its a membrane that aprons your pelvis including bowels, liver,kidneys) we knew from the beginning that it was inoperable and terminal. during my research i came acros a treatment called HIPEC. i only read about it a little in that it involves flushing the pelvic cavity with a type of heated chemotherapy and requires surgery. i mentioned it to his oncologist who told me that he had never heard of it and that google is not a good place. he told me that there are some treatments in other countries that he wouldnt want to put anyone through. i thought about what he had said and put it to the back of my mind safe in the knowledge that he is the expert.

Dad has got progressively worse and is currently in hospital and is near the end. whilst i have been sat by my dads bedside i have had alot of time to think and this treatment popped back into my head so i googled it further. it turns out that it is available t The Christie ( i live near manchester, dad doesnt) and the royal marsden. it coul have been our chance but its too late now. i am fuming with myself for not looking into it more. i know it may not have been suitable but this is my dads life. surely it was worth some investigation.

if he was diagnosed int he areas surrounding The christie he would have been informed of the treatment if it was viable but as he lives n lincolnshire it was never an option. it just feels so wrong

I'm so sorry for what you're going through and what you've been through.

I have no experience of this, but I think you must try to put this out of your mind now. I appreciate that is much easier to say than do.

I am so sorry.

I'm really sorry to hear that your father is so unwell. My own father is in a similar position and I've found that it’s a time when lots of doubts and regrets have arisen.

I've no idea if your father might have been a suitable candidate for this treatment. I don’t have any medical knowledge beyond google but I do know that there are different types of cancers that can affect the same area, perhaps this is the case for your father? However, I'm sure you don’t need a load of guesses and half understood information from people on the internet, you need to speak to your father’s consultant and find out exactly why he felt this treatment wasn't appropriate for your dad. If you have no joy phoning and asking for an appointment with the consultant, corner him on his ward rounds or write to him via PALS.

My Dad is also dying of cancer Pud. There is no treatment for the type he has that could be effective at his age, and even if he was younger mesothilioma has a very low survival rate. I'm sure you know that this is very likely the case for your dad too - chances are the treatment would be unpleasant and ineffective - but if I were you I would be feeling just the same. Sorry this is happening to you and your dad.

thanks..

i know deep down that it wasn't probably right for him. i think its the lack of info thats the hardest thing to take.

I have absolutely nothing to constructive to say, but didn't want to leave you hanging. I'm so sorry for your loss and for what's happening with your father

Try not to beat yourself up because you didn't press him or look further. You took the advice of someone who is clearly professional enough to be doing what he's doing. I know that probably wont make you feel better, but what ifs will eat you up too.

Please don't feel guilty.
You trusted the consultant who is a professional and should very clearly be the person to trust.

If anyone was to feel guilty, it's the consultant who should have known about a treatment available in England. His comment about no googling was a massive sweaoing statement (I understand why, google isn't always your friend but...).

Now is the time to be with your dad, not to loose ourself in 'what if ....'.

((Hugs))

I'm so sorry you are going through this and know how you are feeling now.
Do you think your dad knew he was so poorly but didn't say anything when your mum was ill.
I believe this was my Dad who died months after mum went.
I know you want to hang on to him for as long as possible, but we were told that as it was terminal they could operate but chemo wouldn't touch it and he wouldn't survive.
The operation just speeded things up in all honesty, and after that he had what treatment they could offer him.
I'm so sorry pud

It's not what you want to hear but I think deep down you have to be realistic and accept that the treatment your dad is having is the best he can have.

My dad had cancer, was treated at the Christie and reacted so badly to chemo (it affected his heart) that he had to stop having it.

I think what you are feeling is perfectly normal and part of the grief process, particularly so soon after your mum. We want to blame someone, be angry with someone and scream and shout that we could have done more.

Be wth him, love him and cherish your final moments with him. Xxxx

My dad had this, he went from having no appetite & feeling sick to dying 6 weeks later. It took quite a few weeks to diagnose and was too advanced.

Sympathies to you, was hard too see my dad going through it.

I'm so sorry to read this

Would it pot your mind at rest at all to bring it up with the consultant now? You could also ask for a second opinion from one of his/her colleagues too. I'm just wondering if that approach would remove some of the doubt

I am so so very sorry for what you're going through. I don't know anything but please do not haunt yourself with what might have been. Take care of yourself

I too would suggest ringing the oncologists secretary to make an appointment to speak to them. Not for confrontation just for more info, you might find it was never suitable and then you can put your mind at rest.

Whether you do this now, or at a later date.

NewLife4Me - he has told me that he knew he wasnt right but didnt have time to dwell on it when looking after mum.

i am ready to let him go now. he has suffered so much. i think i might speak to his oncologist after he has gone. you are all right i need to fosuc on being with him now.

i may request his medical records and ask The christie direct.

pud
I am so sorry for what you and your DF and family are going through.
Please don't torture yourself. This is a horrible time for all of you and I think that at this terrible time there may have been some miscommunication. I understand that you have read around the subject but I know some of the websites aren't very clear so please forgive me if this tells you things you already know: I am just trying to make this clear in the hope that it will help you.
Metastases are cancer cells that have come from a primary tumour and been carried by the blood or lymph systems around the body to a secondary home. A peritoneal metastasis is a tumour that is indicative of a cancer elsewhere that has (for want of a better word) seeded and spread to one or more organs within the peritoneum (abdomen wall) or indeed the abdomen wall itself.
HIPEC involves opening and washing out the peritoneal cavity with chemotherapy drug, all of which will cause side effects, and which are essentially toxic. The success rate is dependent on whether surgery can remove all the tumours as well as how well the patient is overall to survive such a drastic procedure. I don't know the details of your DFs case but it may be that his tumours were not entirely surgically removable or that they were embedded into tissues which preclude the success of superficial perfusion.
Please do not torture yourself with ifs and buts.... the jury is still out on where the risk/benefit for HIPEC lies, and it may well be that your Father's tumours were not suitable for a full surgical removal followed by hot chemo treatment. There is a huge cost to the patient of this surgery and it may well be that the condition was not treatable in this way.

I am so sorry for your loss and your current troubles.

Could have, would have, should have is normal when dealing with any kind of anguish but it probably wouldn't have changed the outcome. I know this sounds harsh but you are going to need all your energy to support your dad and get yourself through the next stage. I am taking from personal experience here. You sound like a bloody good daughter. X

momb - thank you so much for that. just speaking to someone who knows what the hell i am talking about is a relief.

he did have a bowel cancer 2 years ago but as i understand it they are treating the PM as primary as they believe that it was there before the bowel cancer.

i did think that it sounded like a very aggressive treatment but having you spell it out to me has helped me ALOT.

he is currently on a morphine syringe drive. this does feel like the beginning of the end. his urine is dark red and full of blood. they have tried to MRI scan him twice but he cannot tolerate it. we are currently waiting for a CT scan and have been waiting since yesterday morning. they dint know if it has spread but his platelets are low as his his HB level and he has not had any chemo to explain this. i think we just need to sit tight and wait for the CT results

OP, I am so sorry . I have been in your shoes, I lost my Mum to oesophagael cancer when she was 60. About two weeks later it was announced that there was a laser treatment that could possibly have saved her. What momb says makes sense. Just because a treatment is available doesn't mean it's right for a particular patient, I have learned that to my cost and have had to let it go (for now). Do seek answers later if it is going to help you (not sure it will) but we did the same and somehow we managed to get some comfort from it. I wish your Dad peace and you comfort. So very tough and I hate reading about anybody going through this

My df is dying of penile cancer. It developed high up inside his bladder area and was not diagnosed until it was too late for anything to be done.

His GP was treating him for problems passing water and had tested for prostate cancer markers, but didn't send for other tests.

Prior to his diagnosis he was also admitted to hospital for near kidney failure when he couldn't wee. There was a blockage when they tried to cathetarise him and as soon as they told us that I just knew .

Even knowing there was a blockage, they waited until his kidneys had been stabilised, then put him on the waiting list for a standard outpatients procedure to investigate. It was cancelled once and moved back. Then he was admitted to wait for more tests after the initial results came back and while cultures were grown.

As a result, we knew about a blockage in Nov, but he didn't get his diagnosis til Jan.

Then he was signed up for a trial chemo, which failed and only after it failed did it come out that it had a very low chance of working anyway.

I'm angry with the wait for tests.
I'm cross the gp didn't find it. Or that the hospital didn't move quicker.

But on more realistic days I realise that none of that would probably have had much of a result.

I think the advice is that all you can do is make the decisions you can based upon the information you have at the time.

I'd be complaining to the consultant/hospital that the treatment he said he'd never heard of was available and ask why didn't they know or look into it.

for every one who is going through it or has been through it.

Sorry you're going through this. I have been through the same with my mum recently.
I have heard of this treatment in relation to bowel cancer with secondaries in peritoneum (also known as sugarbake) and know they do it at the Christie although they have very specific criteria and don't think they would use it in palliative chemo.

I do had these feelings of 'what if' with different treatments that I had researched from surgery to targeted therapy with mum, but in retrospect, although she was young, the cancer was way too aggressive and advanced and I now understand why she was offered the palliative chemotherapy that she was.
It may be worth in the future writing a letter to the doctor to explain what you have here as it may give you more understanding as to why the oncologist hasn't heard of it and why your dad wasn't offered it. I know the beating bowel cancer website has information about it in one of their treatment leaflets-maybe direct him to that.

I think you have been a strong advocate for your dad so please don't feel guilty.
Thinking of you

Pud, I'm so sorry for what you're going through. I lost my mum to pancreatic cancer last year. She was only diagnosed 3.5 weeks before her death due to the incompetence of her GP who ignored her worrying symptoms, told her it was gallstones and ticked 'non urgent' on her scan referral.

I carried anger for so long that she was denied treatment - her care was palliative only. I was angry that she could have had chemo which might have extended her life.

18 months on and I have let that anger go. She was never going to be cured, at best she would have ensured painful and unpleasant chemo in exchange for a few more months if life, which she'd have spent feeling unwell from chemo. Chemo is a great option for some people, but looking back, not for mum, and I'm glad now she was spared it.

I focus on what I can be grateful for - that in her last two weeks we cared for her at home as per her wishes. She died in her own bed with her family around her. She had fantastic palliative care from wonderful, caring district nurses and GPs. We said our goodbyes, she knew we loved her, we held her as she left us.

I understand your rage, I've been there and felt it, I'm not a doctor but I feel that chasing new and experimental treatments wouldn't have been in your dads best interests in his final months. There is so much you CAN do for him now - advocate for excellent palliative care, be there with him, tell him you love him and will carry him in your heart forever. These things will mean more to him now than anything else you could pursue in terms of treatment. Let your anger go and focus on giving him a good death. That will bring you so much more comfort when he is gone. You sound like an amazing daughter and I'm sure he is proud and grateful for your devotion to him.

Welshmaenad....what a lovely and uplifting post. Brought tears to my eyes

Thanks MrsC - I try to be grateful for the things she would have been grateful for, if that makes sense!