Advice on tomotheropy plus other options - 1246207

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Advice on tomotheropy plus other options - 1246207

My mother is 58, very fit and has excellent lung function tests. She has non-small cell squamous lung cancer stage 3b (t4,n2,m0).

The nhs (we are in the uk) were proposing chemo and normal radiation or just chemo to try to clear nodes and shrink tumour so the possibility of traditional surgery may then be an option. (Thats is what has been discussed with 2 consultants and we have a letter to prove that.)

So we went to see a clinical oncologist to see which route is best to go to try for surgery and was shocked and disgusted that we where told there is no chance of cure and surgery is very unlikely as theres not much chance of the 2 lynth nodes clearing (even if they did there are probably more we can't see) also radiation would be to much so we are only offering chemo but there is a 50/50 chance it won't work! Then possibly light radiations if that don't work!

We have decided to get a second opinion and also have an appointment to see a specialist in tomotheropy (private) but was also informed by this oncologist that no matter what treatment we seeked elsewhere it would only change my mothers outcome by weeks!

This is not the impression or information we have been told previous to this appointment. I felt they had decided to give up on my mum before they had even tried but we are ready to fight this! And considering how fit and young my mum is why not try everything!

What would be my mothers best options paying private for tomotheropy? Would it help get the tumour away from the heart and destroy the to lynth nodes?

Thank you in advance.

certain spring
Reply To: Advice on tomotheropy plus other options

Hallo kennawade. Just wanted to welcome you to GRACE. I am sorry about your mother and the shock of her diagnosis.
I am not a doctor but my understanding is that, while stage 3b is a controversial subject, it's quite common to have chemotherapy and radiation rather than surgery. Dr West recently wrote that: ..."many leading experts really think nearly all patients with anything more than one N2 node, or certainly more than one nodal area (station) are better served by a non-surgical approach." While you are waiting for a GRACE doctor to respond, here's a post that might be informative:
So I don't think what you were told by the first oncologist is as outrageous as it may have seemed at the time. However it's often useful to get a second opinion, and here is a post about that:
For those who, like me, have not heard of tomotherapy, it is a type of guided radiation:
You might in fact be able to get it on the NHS. There are tomotherapy machines in Birmingham for example, at Addenbrookes in Cambridge, in Newcastle and almost certainly in London. But you would need to get the agreement of an NHS oncologist. As I'm sure you know, going private can be very expensive if you don't have private health insurance.
I am sorry you felt your mother was being "written off". I have had similiar experiences myself. The oncologist may be so busy and pushed for time that he/she may not realise the impact of what they've said. Sometimes it is a question of personality, or an unwillingness to "think outside the box". If you can find someone who is positive without being unrealistic, that will make the whole process easier. Best to you and your mother.

Reply To: Advice on tomotheropy plus other options

I too want to welcome you to Grace. I hope you will find the forum helpful. Certain spring has pointed you to some excellent blog/posts written by our faculty. Please don't miss the suggestions for continued reading at the end of those blogs. I've added one that may be of added value. BTW, our search engine is very good too.

Certain spring is right about the second opinion. I hope you read the blog and feel comfortable seeking that 2nd before paying for these procedures out of pocket. Not just because of the money but also a second or more heads on your mom's case. So much depends on the individual case it's impossible for anyone to be able to make that judgement from an online community. Increasingly decisions are made for stage 3 cases in a multi-disciplinary meeting, (I believe called a tumor board) a team of doctors from the cancer center; medical and radiation oncologists, thoracic surgeons who have your mom's case in front of them discuss the pros and cons of treatment options as a team. These meetings take place weekly in many large cancer centers. A center with this type of practice would certainly be a good place for a second opinion.

In the meantime I will contact our radiation onc and ask him weigh in on your question about tomography.

Best of luck to you and your mom,
forum moderator

dr loiselle
Reply To: Advice on tomotheropy plus other options

Hi -

Forgive me for the brief nature of this post, but wanted to get you a quick answer.

1) Unfortunately the chance of long term cure for stage III lung cancer as you have described above is 10-20%. I sympathize with the fact that it is not a better prognosis.

2) With regard to radiation technology, Tomotherapy likely offers little more than modern conventional linear accelerator based radiotherapy in a case such as this. There are some circumstances where Tomotherapy can deliver a little higher dose with a slightly lower risk of side effects, but in most cases, the additional benefit is limited.

Chemotherapy and radiation may offer the best chance, especially given that your mom is otherwise young (58) and presumably in good health.

The larger questions at this point are:
1) Did she have a PET scan?
2) Did she have a brain MRI?
3) Is this a squamous cell carcinoma or an adenocarcinoma? If it is an adenocarcinoma, was testing done for EGFR and ALK mutations? If you have further questions on this point, I'll ask the moderators to direct them to the medical oncology faculty.

I hope this helps.

Dr Loiselle

Reply To: Advice on tomotheropy plus other options

Thank you so much Dr. Loiselle, that is exactly what we needed.