What would you do/did you do? Help needed please

[Kennawade]

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!

I felt as if there was no hope!

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!

They also keep referring to my mothers xray that was missed the year before as "hidden behind the heart" not missed! Its 10x7cm even i can see it! And after we asked for copies of the xrays we received 2 jpegs that had been lightened so it is not as clear (although you can still see it).

I find it very hard to trust these people!

[willowtree]

Hi Keenawade,

I think I have been responding to your sister Cherryblossom. So sorry to hear about your Mum.

As I understand it, and I am not a medical person, I have just gathered my information trying to support relatives through this terrible disease. I believe the medical profession will not say that cancer is cureable, but that it is TREATABLE, often for many years. As you will have seen on here there are many stories of survivors (I have read some 10 -15 years down the line).

Get your second opinion as quickly as you can. I am concerned that the longer you wait before starting chemotherapy may not help. My husband had neoadjunct chemotherapy (chemotherapy given prior to considering surgery in the hope that it would shrink the tumour and stop any further spread once it had reached lymph nodes). It was explained to me by the Oncologist that this was an important first step.

I would also read the posts about diet change - cut out sugar, high doses of Vitamin C (tablet form) raw vegetables and fruit etc.

Thinking of you all x

[Billculbard]

Hi there.

I don't like to keep repeating myself as it's bound to get boring. But it's because people are continuing to go through the same thing, year after year. Some things have changed in the past 12 years and some things haven't. One thing that HAS changed I believe, is that people are more inclined to question things when they're not satisfied with what's going on. Good on you! I wasn't.

I had the squamous tumour too, although I don't recall the stage. Or I didn't ask!! It was inoperable because of its location and I was told quite clearly, that my consultant couldn't cure me. She did however, tell me she would do her best to prolong my life and it has worked.

I had chemo, which shrunk the large tumour, then radiotherapy which zapped it. That was in 2000.

Best wishes, Bill

[geoffh]

kennawade, you have exactly the right attitude!! Question EVERYTHING they tell you. A reluctant consultant is merely someone you MUST cut out of your Mum's life. A reluctant treatment "expert" is as dangerous to your Mum as the cancer itself. Find another hospital and leave the auspices of the unhelpful oncologist behind forever...they will only hasten your Mum's demise. You already know you are fighting for her life, so stay tough, stay firm and believe 100% in what you are doing because you are absolutely right!!

I am an architect who specialised in healthcare for over 30 years, even building parts of the three hospitals that my Mum was treated at, (she dies a few weeks ago). I made lots of contacts in teh NHS around the country. the best advice I got was "always question an opinion, and get a second one", and "treat your doctor the same way as you would a plumber or a mechanic - they are just people doing their jobs and have no higher status than the average workman".

When Mum was first diagnosed in the Ormskirk/Southport district she was told there was no hope. We were lied to at every stage, so we decided to go to the very best available in the country and got a second opinion at Christie hospital in Manchester. They devised treatment which was very hopeful and 99% sucessful.

However, secondary cancer flared up in an adrenal gland and Mum wanted to seek advice back at Southport. They just frigtened her so much she had a breakdown. despite us seeking, (and paying for) second opinions Southport undermined all our efforts by writing confidentially to the otehr consultants stating theat they would not pay for further treatment, (Mum had been given her "one free go on the NHS"), and that she was beyond economic recover. Her breakdown rendered her untreatable. It was all down to money!!

Fight and keep fighting. The reluctant consultant is your enemy!

[Hidden]

Hi there,

I have already replied to your sister with some advice on your situation and where to go for your second opinion. I think you should really get your second opinion from an Oncologist at Christies or the Royal Marsden before seeing someone about tomotherapy. You need an Oncologist, (cancer expert) to decide on the best teatment plan and explain why this treatment plan is the most suitable and beneficial for your mum. You can do this privatley by contacting the consultant secretary at the hospital of your choice.

Just to clarify, the surgeon is no expert on cancer and cancer treatment, he/she is just the person who can perform the surgery safely, so you cannot hold what he/she said as gospel. You also have to be careful on what route you follow as medical professionals will look after each other and are not likely to want to tread on each others toes, so be very diplomatic in yoiur approach. Once the stage of the cancer is 3b or 4 there usually isn't any cure, this doesn't mean it is not treatable and does not mean many years of life, you have to believe this. There are many new treatments available now that there are no longevity studies for as they are too new for any studies to have been conducted. Therefore no one can put a time scale on life expectancy. I for one chose to ignore any stats I was given.

Wishing your mum all the very best and hope you get the best treatment for her.

lyn x