New patient: Just been diagnosed with... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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New patient

E10ly
E10ly

Just been diagnosed with lung cancer......due to meet and have tests with the surgical team.......any questions you wished you’d asked at this first meeting? All advice gratefully received.

10 Replies
oldestnewest

Hi e10, for me it took a while to come to terms with what I had stage 4 lung, with a pool of tears and feeling like a victims , I turned it around , it was a fight

Hang in there

I did not have a big problem with chemo but not so much with radiation

Presley

Hi

For me it was more a case of writing down what they said I also had someone with me. It’s a lot to process and so having someone else hear what they say is really helpful. Good luck and wishing you all the very best. I have stage lV lung cancer and am receiving immunotherapy happy to answer any questions if I can. Take care

E10ly
E10ly in reply to Teen225

Many thanks will know more after tomorrow

E10ly
E10ly in reply to E10ly

Thanks for your help, my sister will be with me so that will help hopefully they will tell me my options after tests tomorrow

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear E10ly

Welcome to the forum and sorry to hear of your lung cancer. There is lots of support, information and advice available, you may find this link from Roy Castle will answer a lot of your questions or direct you to what happens next:

roycastle.org/how-we-help/l...

It may be helpful to have someone with you at the appointment as they may remember more of what is being said as it can be a lot of information to take in. You may want to ask the following:

If it is lung surgery that will be offered, we have a very useful booklet, which has a section on what questions to ask (page 41) :

roycastle.org/system/file_u...

Our booklets can be ordered on our website roycastle.org and posted out to you.

Other questions you may wish to ask would be:

What kind of lung cancer and has it spread, will other tests need to be done before any treatment.

What treatment options are there and the duration of these.

Side effects of treatments and how it will affect your daily life.

You should be allocated to a a lung cancer specialist nurse, who is an excellent source of advice and information. If you have not been allocated one, this can be requested either by your GP or Specialist.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Support Tem

Thank you for the advice, they can’t do a biopsy (lungs not up to it) but are 80% sure of diagnosis. Going for a fitness test today then back to Guys on 28th where I will have to make a decision (if the operation is viable!) between that and SABR treatment, I am still finding out about that. Unsure where to find centres that have this treatment nearest to me, do you have any literature on this please? Thank you

As Teen225 says take someone with you, also write down any questions you can think of so you don't forget. Ask if you have any mutations, EGFR, ALK, etc, there are more immunotherapies now available for them. I wish you all the best.

E10ly
E10ly in reply to waterfd

Thank you

I had an upper left lobectomy (through open traditional surgery rather than keyhole) in December 2010. The questions I asked my surgeon were 'is there no other treatment available? is this the best way to treat it? What won't I be able to do after surgery that I can now? How do I prepare my fitness for surgery? Is there anything I can do to help myself? His honest and straightforward answers I remember to this day.

'Yes, this is the only treatment to remove this large mass in your lung' (at that point I did not have a definitive diagnosis and only had this a month later as lung cancer). 'Scuba diving' - to which I responded that I couldn't do that anyway. He tried to reassure me by telling me he had patients who ran marathons and I remember my response being 'I don't want to run a marathon, I want my life back'. He asked what my usual form of fitness was so I told him I swam so he told me to carry on. I swam over a hundred lengths the night before surgery and 80 on the day of surgery and have gone onto swim much further since recovery. He then added that 'a positive attitude can help'. There have been several advances in surgery since mine and VATS (keyhole) surgery is more common now so usually offers a quicker recovery. Regarding mutations, if it's like mine, the surgery was done and frozen section sent off to pathology afterwards - where they detect the mutations and particular markers that guide any further treatment.

Since my surgery I have found out that very few patients are caught in time or the location of tumours for surgery to be possible so feel blessed that I had this treatment and am still here, living my life, working and travelling. Good luck.

One very important thing is to stay away from the temptation to ‘google’ at best most of the information is outdated. I found the Roy Castle lung foundation and Macmillan have a wealth of information specific to your type of cancer and any treatment offered. All the best

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