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Frustrated with doctors decision, am I in denial ?

JonnyR
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Hi. I am confused with what my dad has been told by his doctor (oncologist) today and I don't know how to process it as far as what I should do next. He is 77, he has heart disease that he was on a waiting list for 15 months to be fixed (which has now been cancelled) and also has just been diagnosed with 5cm upper lung cancer in one lung that has spread to his brain and created 3 mets there. It has not yet spread elsewhere. He is not being offered any treatment, no gamma knife, no immunotherapy drugs, no other radiation, nothing other than at home care and some steroids and oral morphine.

He doesn't have any pain other than when his right hand side ribs are touched. I am so frustrated, I know doctors hate Dr Google but everywhere I look online has mentioned treatment for Stage 4 cancer that has only spread to 1 other organ, treatment even happens for multiple organs sometimes. The oncologist says they will not need to see him again. Both he and his wife (my mother) have just accepted it, but I can't help but think more could be done. His walking is very poor so he has to use a wheeled walker, and he can be spaced out at times, but wouldn't Gamma Knife reverse some of these things ? Living in a wheelchair and being a bit spaced at times is better than death, he is still coherent most of the time and can chat.

I just feel it is wrong and unfair that they are not even trying immunotherapy drugs at the very least on him. Cancer that has only spread to 1 other organ is surely worth trying to improve to prolong life ? The doctor said they won't give him gamma knife radiotherapy due to the possible side effects and won't give immunotherapy drugs as they are only given in conjunction with the radiotherapy. But Gamma Knife is meant to be extremely well tolerated and safe. He only has 3 mets, some people are treated with 10+. I am unsure if this is because it is the cash strapt NHS or what.

I feel very isolated as everyone in the family is just accepting this result but I want to fight for him as he is not in any pain yet (when not touched) and it isn't in the liver or bones yet which I know would be fatal. I feel I have not had any good explanation why no treatment is being offered when his lung cancer is still only in 1 lung and only spread to 1 organ.

Is this a common situation or should I try and contact someone to find out more ? 

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    Have you attended any appointments? Reason for asking, it may be down to the fact he's deemed medically unfit for any sort of treatment. This may have been mentioned to both of them, and they've just forgotten that it was mentioned. You get so much information at these meetings, it's easy to forget a large part of what was said, and why it was said.

    To receive any sort of systematic cancer treatment, even getting general anaesthetic, you have to meet a fitness criteria, one of which is heart health. It's why heart scans, ECG's etc are an important part of the pre-treatment testing. Not everyone unfortunately is deemed medically fit to receive treatment. Sometimes the treatment required is deemed worse than the thing it's supposed to treat in the here and now.

    Chemo, immunotherapy etc can put a lot of strain on the heart. It can also make people more susceptible to blood clots. More so if the person is immobile, it further increases the chances.

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    This must be extremely frustrating for you. However, as ProfBaw says there are criteria which people have to meet. I am caring for someone considerably younger than your father who does not meet GA criteria. (I struggle to deal with the fact we are now potentially just a fall away from disaster!) For us, there are risks in terms of GA posing a further knock to cognition given there is already neurodegenerative cognitive impairment, plus other co-morbidities such as respiratory issues, poor wound healing, failure of other systems within the body etc. It's not a case of being totally written off as the doctors are still trying to optimise what they can. But I have to accept that my friend does not now qualify for operations/treatments that others significantly older might be allowed to have with every case being assessed individually. This is extremely painful for me because I know many older people who have received treatment, also sadly some who died on operating table as heart not up to it. Doctors generally are the people best placed to advice in terms of treatment, but there are circumstances where it may be good to seek a second opinion. In your father's case, the awfulness of his situation is that with the cancer progression the doctors are less likely to operate on the heart. I think it would be a good idea therefore for you to call the CRUK nurse helpline to discuss your concerns further just to settle that need for a second opinion or not, as it's clearly troubling you. Then you will know you have tried your very hardest, which I feel is is important to you in coming to terms with this difficult situation. My heart goes out to you because I know exactly what it feels like to have a loved one turned down for treatments. It's hard and it hurts. Take care.

  • Hello and thank you for your post.

    I am very sorry to hear about your dad's situation and I can appreciate you want to know more about possible treatment options for him.

    When doctors look at treatment for anyone they have to take into account the patient's overall fitness and any co-morbidites (other serious health conditions) that they have. It might be because your dad has a heart condition that treatment is not recommended. This could be because the benefits of having treatment could be outweighed by any risks. This could have been explained to your dad. 

    I'm afraid I do not know if your dad could have gamma knife treatment, but if he wanted to ask his team about this he could. If he gives permission for you to ask on his behalf you could. A good person in his medical team to contact would be the cancer nurse specialist. If he does not have one then you could contact the consultant's secretary and ask if a message could be passed to the medical team.

    Gamma knife is available on the NHS but in very specific circumstances. This type of radiotherapy is provided in specialist centres across the UK and a patient can be referred by their cancer doctor to their nearest one if it is appropriate. An example of one of these cetres is here , there are others. I am sure you are aware that this treatment does not offer a cure but can in some people extend life.

    It might also be mindful to see what support your dad and mum could have at home by reading our information here

    I hope this has been of some help. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

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