Hi all,
I posted at the end of November about my dads first appointment with MaxFax clinic and how we were immediately told it was mouth cancer and no treatment. (When we asked why not treatment we were told because of you as a person there is many different factors and the specialist didn't think my dad could handle whatever treatment it was). If you seen my first post I was questioning if it was because he had previous strokes or diabetic).
2 weeks later we had a second consultation to be told his case was considered at a MDT meeting and it was infact as the specialist suspected cancer and no treatment. Again the specialist went into more detail with regard to treatment which he said it would be a case of basically splitting and removing my dads jaw to then reconstruct it and have a flap? And then disecting his lymph nodes (i think thats the term he said sorry if I've got it wrong) and 6 weeks of radiotherapy, none of which he thought my dad could make it through.
Fast forward to now when we have finally wanted to know more details, I have picked up a copy of his letter from the consultant to the gp and it says this man has been diagnosed with T2 Orpharyngeal cancer and consultant and MDT have decided no treatment based on my dads "performance status" and extent of the tumor.
Que me then google searching what on earth is performance status.
It slightly makes sense but there is that urge in my gut (I have adhd) that surely because someone is disabled (can't cook, can't dress without help, can't work, limited mobility but he can bathe himself, access the toilet, eat perfectly fine, make decisions, smarter than anyone I know) that this is such an important factor in whether he can have treatment or not.
I'm 50/50 on whether this is the grief talking because obviously I'd do anything not to lose my dad but im obviously fully aware of the harshness of treatment and I sort of agree with the point that yes he is disabled and this is the fact of life, disabled people have a poorer prognosis (so says google).
I guess I've been telling myself for the past month yeah surgery is high risk because he has had strokes, he is high risk for infection, adequate healing and controlling his sugar because of diabetes, radiotherapy is harsh on the head and neck area. All of the things that make sense in my own head. But for his mobility to be a factor in the decision even slightly, I guess I'm just a bit shocked.
Apologies I don't actually know what my question is or the point of this post. I guess I'm hoping someone can say its not just because he's disabled. My dads fully accepted (or so he says) that something is going to have to take him one day and he is happy to go because he will never be able to dance again, is tired even walking to the toilet and is finally free of the constraints of diabetes so to speak in his words "if I only have a few months to a year left, I guess I can eat as many sugar doughnuts as I want now".
I guess I'm just struggling with losing him and going through something that could, potentially, in 90% of the time for most people, be cured. I know I'm being totally selfish. I just don't want to lose him, I don't want to see him in pain and if he has to leave this world, I want him to be comfortable for the remainder of his time here.
Hi Janey123456
I do remember your earlier post. It is such a sad state of affairs and I feel so sad for you.
The truth is that the treatment is so tough that even a fit and well person suffers badly.
Most of us are unable to eat orally for a good few weeks and are dependant on high calorie food replacement liquid that would completely destabilise a diabetic. Chemotherapy is really hard on the heart. Radiotherapy impacts the base of the brain as well as the arteries in your neck so a history of stroke is maybe a factor in their decision
I can understand your mobility concerns but maybe it’s just something that is adding up with all his other comorbidities.
Have you actually sat down with his oncologist and got an explanation of how exactly the decision was arrived at?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani,
Your reply makes the decision make sense. I guess it is a multitude of different factors that goes into a decision of this nature.
I felt the same way at his first appointment and I remember coming out of the appointment after my dad asking questions like is it to do with his age or diabetes to which the consultant said no and I vividly remember saying on the way home "I hope its not because I took you in, in a wheelchair". I don't know what made me think of it at all other than the genuine ability to see how difficult life is for disabled people when my dad had his stroke 10 years ago.
The first appointment was an absolute whirlwind of emotions. Certain questions were asked but not alot as we were not expecting him to say what he did. Second appointment was filled with hope of what may be to then crash and again very emotional and difficult to consider what the consultant was saying when he moved on to the approx timeline.
We have a 3rd appointment next month. A "let's check in appointment". I think this will be when most of the questions will be asked as we've had time to process what has happened a little more. I guess I just need more information to put my mind at ease that this course of action is the best outcome for my dad and to be honest in my head I am agreeing with the decision, its my heart thats saying no it can't be.
Jane
in my head I am agreeing with the decision, its my heart thats saying no it can't be.
Oh sweetheart. My heart breaks for you. Hugs
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Janey , my hubby had surgery for mandibular with flap which involves taking bone from the leg and skin from that area to make flap ( gum ). Then 6 weeks of radiotherapy. He was 59 and fit and active and that was 2 years ago in May. Hes still suffer with eating , salvation , numbness on left neck and shoulder and numbness on right foot and he has said he would not do this again. Its only natural you are concerned and like Dani said ask the consultant. Wishing you all the best xx
Hi Jane
I am so sorry to her of the emotional dilemma you are in. Has anybody asked what your Dad actually wants having laid out all the facts for him? As Dani has said the treatment is really tough, even on a relatively fit person. He may independently decide that living with the cancer is the better option than having the treatment and the consequences of it on his life going forwards.
I know there is not much chance of being treated for a cure having had the MDT, but I guess they will give palliative treatment in the future that may involve radiotherapy as well as drugs.
No clinician will undertake treatment on someone where there is a very high risk of the treatment doing more damage than the disease to that person.
I've faced this with relatives that I have been the primary carer for over the years. It is not nice, but ultimately their view of what they want is paramount. I hope you and your dad find peace in the decision.
Hi Janey
i can’t really add to what the others have said. Heart v head is always a difficult place to be in. As the others have said it’s a hard choice.
sending hugs
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Good evening Janey, i also remember your first post, so sorry you are going through all of this, i /we remember going through the same when my mum had Gall Bladder cancer and we could not understand why they would not operate or give any treatment so we arranged to have a meeting with my mum's consultant who said it was not fair to put my mum through an operation or therapy as it would not cure cancer, i think we were all looking for someone/something to blame or hold onto. When we look back we realise the consultant was right as she had other medical issues, wishing you all the best. Hugs.
Chris x
Hi Peter,
He was pretty accepting of it from the very first appointment to be honest. He said "that's fine" to the consultant when the reply to his question was i don't think you could get through treatment.
My dads an extremely laid back guy and doesn't really worry about himself. I often think he's just being brave to keep me calm. He only had one child and he knows I'm very emotional and a worrier. One of the first things he said was "don't worry about it".
Hes watched both his mum and dad go through cancer so he knows somewhat of what is to come. My granpa was given chemo and 3 weeks later he was gone. I watched my gran deteriorate and she chose not to have any treatment to give her more time but it seems so different now its my dad.
Jane
Hi Chris,
I think thats what I'm doing too. Trying to find something to say wait a minute is this really the case. The consultant did mention about quality over quantity kind of decision and I totally agree with that argument too. & even if he did go through the treatment, what if it came back or had already spread elsewhere or it didn't actually work. I guess I need to look on the more positive side of he is here just now and nothing has actually changed (apart from pain medication) and to enjoy what we have left while we can.
Jane
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007