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The Roy Castle Lung Cancer Foundation
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Staging after surgery

Hello all

Sorry this may be a long post!

My mum had her appointment with the Oncologist today, it should have been about 6 weeks ago but was delayed due to her complications post surgery. Anyway he offered mum chemo (cisplatin and vinorelbine) 4 cycles if possible. During the appointment he kept referring to a T4 N2 tumour, I asked what he meant by the T4 part as we had been lead to believe that my mums cancer was early stage and the right side tumour was also around 1.5 inches on the pet scan in December 2016 and the left one was "microscopic" and too small to be seen on a ct scan. After the surgery (done by vats) the surgeon did tell my mum that the right tumour had grown a bit and was also in her lymph nodes on the same side. Anyway the oncologist was a bit confused at first about the T4, and said it probably did relate to the tumour size. He checked back through some notes he had made but was unable to access his computer to check fully and said the right lung tumour was roughly 8cm by 7cm and there were microscopic cells in the visceral pleura and lymph nodes and the left tumour was still a t2 and about 2.78cm. I am so shocked - she has gone from being told it is early stage - surgery with curative intent to some cells in the lymph nodes to this! I can't understand how her surgery was done by vats either as her scar is nowhere near 8cm long!! He then went on to say that everything was removed surgically with good margins etc and the chemo will give her only an extra 5% on her survival chance so she has to make a decision if she wants to go ahead considering the risks over the benefits. I am so shocked and bewildered after this it was like he was talking about 2 different people! I have looked on some of the websites and believe this means she is now stage 3B. So should chemo not be essential rather than an option? Should she not be offered radiation too? I just can't believe that this has turned out so different to what we were told.

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Sorry to hear about your mum and the confusion I don't know the categories and it would be nice if they explained them. Have they checked for mutations like EGFR and ALK plus others since there are now other treatments for these types which may be more suitable than Chemo. Ask the question since there has been a lot of break throughs in the treatment of this cancer.

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Thanks watered no he didn't mention any mutations, only chemo. I will ask on Monday at the next appointment

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Sorry to hear about the confusing messages you've received regarding your mum. It can be such a worrying time. I'm also confused at your comment about how she had VATS 'yet her scar is nowhere near 8cm'. Do you mean hers is shorter or longer? I had open thoracotomy and my scar is probably around 8-10 inches - I've never measured it but had understood that VATs involved several small incisions to insert the video/instruments. I also have several smaller scars where the drainage tubes were inserted but unsure what you're referring to. If she has one main scar, it was done through traditional open method, it was VATs, there would be several smaller incisions. However the surgeon would be able to confirm what type of surgery he performed if there's confusion.

The staging/classification were changed by the world committee about 18 months ago so it could be different - for example the type of tumour I was diagnosed with BAC T2 7cm N0 would now be classified as AIS T3 due to its size. Chemo can bring unwanted side effects and isn't effective for all types of LC - indeed I was told there was no evidence that it worked on the type I had so it wasn't prescribed. I had no chemo or radiotherapy and my diagnosis was January 2011. Chemo is often given as other systemic therapies are if it's spread to lymph to prevent further spread. Is the oncologist the surgeon or an oncologist dealing with chemotherapy/radiotherapy? Usually patient care is dealt with by a multidisciplinary team who approach it from several angles. Does your mum have a lung nurse/cancer nurse specialist as it may be easier to ask the questions of the nurse but if not, write everything down and then phone the consultant or ask their secretary if you can email your questions in if you are between appointments or raise them at her next appointment. You could always ask for a second opinion if you feel you're not getting the answers.

Try not to panic - reading through all the stuff on the internet can be terrifying and you need to bear in mind that a lot of statistics include very poorly people, older people and those with much worse positions. I found it very frightening until somebody pointed out that this fact and that as a younger patient, fit and never smoker, my outcomes would likely to be very different. So a word of caution when trying to self diagnose via the internet - we can get it very wrong as medics have trained for years. However I also believe that those of us with the condition can get very involved and informed with the latest information (I attend lots of LC conferences) and hear about things that many GPs and family doctors are certainly unfamiliar with. I've also had the privilege of meeting patients who were equally panicked and given poor prognosis yet still around… we're all different and react differently to treatments. Good luck.

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Hi janetter57 thanks for your reply and the additional information regarding the staging process. I have spent probably too much time reading things on the internet!

My mum definitely had a VATS procedure, I should have said that! my confusion arose because her scars are much smaller than a thoractomy would be - her main scar is around 2 inches and she has the smaller ones for the chest drains etc.

My mum did see the oncology surgeon in hospital but the appointment this week was with a medical oncologist to discuss the benefits and side effects of chemotherapy.

I hope that you are keeping well and thanks again for taking the time to reply, it is a very stressful and difficult time but it always helps to hear positive stories from other people!

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You're more than welcome. I know we can all feel so helpless at times. I did with my dad who's had bowel cancer 3 times (twice in his late 50's and last year at 86) - infinitely more stressful than being a patient. At the time of my diagnosis and treatment, I was not as 'calm and philosophical' as I am now several years on.

I will say the whole experience changed my outlook on life in many ways. I wasn't part of any groups or support network and kept my cards very close to my chest about the experience. Now I contribute as a patient advocate to many lung cancer research groups but still don't shout about my experiences except to a select few.

Personally I found reading books really helpful - and recommend 'Cancer is a word not a sentence' by Dr Rob Buckman, ' Anti-cancer - a new way of Life' by Dr Servan Schreiber and 'What can I do to help?' - by Debra Hutton - the latter aimed at others trying to support someone with a cancer or other life changing condition. We're all different so hope you find the support you need at this stressful time. hope this helps. good luck

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Also would suggest that if you are going to trawl online for information to use cancer charities as your first port of call as their information will have been checked/verified by clinicians.

There is a lot of information out there that can prey on vulnerable cancer patients and their loved ones for which there is no scientific evidence so you can get caught up in a spiral of confusion if not careful.

I'd recommend Roy Castle lung cancer site (obviously!), CRUK, Macmillan, European Lung Foundation lung cancer website,(to which patients have contributed) Patient Power, SCTS (society of thoracic surgeons), some hospital trusts have their own information pages within their speciality/department information (although others signpost to the charities) and I'm sure there are other international charity pages with which I'm unfamiliar. best wishes.

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Dear MissyD1

Sorry to hear about the confusion surrounding the information given about your Mum. JanetteR57 has provided great comprehensive information and advice, there is not a lot I could add to this.

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 Team

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