Surgical Follow Up Appointment Tomorrow - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Surgical Follow Up Appointment Tomorrow

My post lobectomy follow up appointment with the Thoracic team is tomorrow. I'm not sure what the process is at my local hospital. Does anybody know the standard process? Do they send you for an updated x-ray or scan? The letter doesn't say anything other than the appointment details I know I will find out the lab results of the tumor the pleura and all the lobes they removed and at the same time I imagine confirmation as to whether I have to have adjuvant chemo/radiotherapy. In a way I am leaning to hoping they are going to suggest adjuvant treatment as my research has shown that cancer patients with Stage 2B and my particular cancer squamous cell, have an increased success rate if this is the case. It would also appear that to be the case that most patients with Stage 2B post op do indeed get offered such treatment as a matter of course but this seems to be a postcode lottery in the UK due to costs. Has anybody else been in the exact same position?

I am preparing my list of questions to include if no adjuvant treatment why they have decided that and to confirm the evidence is this will not leave me in a less favorable position, as well as the usual questions like frequency of X-rays and/or CT scans and if only X-rays suggested why (given they only provide limited detail and CT scans are much more accurate and informative). I am also aware that squamous cell is one of those cancers that should it recur it will be far more aggressive than before and more likely to appear other organs so it seems to me CT scans would be more appropriate. Can anybody offer any suggestions for any other pertinent questions?

In the meantime, I am so happy that I can have my first bath in absolutely ages it feels like, so I'm off to enjoy that right now.

Enjoy the rest of your day everybody.

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At my follow ups I have always had an x-ray. Hope all goes well for you.

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Hope you enjoyed your bath. Try not to worry. You are likely to be given a chest x-ray and as you say, explanation of exactly what has been found pathologically following your resection. Treatments are not variable due to cost in the UK/NHS but treatments are much more targeted now based on the biology of the tumour and the genome of the patient and any other conditions they have and whether or not the Trust has access to a relevant and appropriate clinical trial. I had no adjuvant treatment for my 7cm mucinous BAC tumour stage 2b (now reclassified as IMA stage 3) in Dec 2010 when treatments were not so personalised as there was no evidence for my specific rare type that it gave any clinical benefit. Chemotherapy and radiotherapy both come with many side and late effects that can affect quality of life. Knowledge through evidence based research has developed considerably in the last few years as well as a national optimum lung cancer pathway having been developed. Variability in treatments across the country can be affected by many causes - type of patients (age, frailty, etc), distance between treating centres, individuals within Trusts who may be quicker to treat than others and other factors - these are all shown and looked into by Trusts on an annual basis based on the outcomes/results of the published National Lung Cancer Audit. The widest variability tends to be in how many patients get surgery ( many refuse it despite it being the treatment with greatest curative intent/outcome), Stage III patients where treatment opinions vary, and access to lung cancer specialist nurses. The reasons chest x-rays are used in the UK is that many CT scanners are unable to deliver low doses as they are used for diagnostics rather than check up and radiation does in themselves can cause cancer especially if done with repeated frequency. Gradually trusts are investing in lower dose ones (usually those funded by PFI or participating in lung cancer screening pilots) but as a lobectomy/lung cancer survivor for 8+ years and now very involved in national and international level lung cancer research, better understand the reasons for the differences in how services are delivered here. The mantra ' first do no harm' still is the first principle here. I'm sure when you ask your questions, they'll explain but can reassure you the treatments on offer in the UK are as good as anywhere - the main reason the UK lags other countries is late detection - other countries do not use GPs as a gatekeepers to specialist services (only Denmark whose results are as bad as ours) and many people delay seeking help as they believe there symptoms are 'not worth wasting the doctor's time' or they go elsewhere (pharmacies for example) for over the counter treatments rather than investigations. There is good information about milestones, treatment and side effects in the Roy Castle lung cancer booklet ' my lung surgery' so may be worth taking this or having a look at the questions/issues raised within it to ask about your recovery. One question I'd ask is 'if I have any concerns or questions after my appointment here today, who can I contact and when?' I always felt that I had to wait however many months it was for my next appointment with a consultant but have since learnt this isn't necessarily the case and if you have concerns, they may prefer you to call the nurse specialist or consultant's secretary. good luck.

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Thank you so much for the above which is so informative and helpful.

I am so happy to say that at my appointment today (and an x-ray was taken :-)) that the cancer has spread nowhere and was confined to the tumor alone and today's x-ray was clear. However, given that my tumor was quite big ie 5.7cm x 4cm x 3 cm and a cavitating squamous cell NSC type , mop up chemo should be something to consider. I should receive an appointment to discuss the pros and cons for my personal case within the next few weeks with the oncologist. This is really helpful as it gives me time to recover more and gain more strength. Apparently as it's "mop up"/adjuvant chemo, it wont be quite so tough or regimented, or so long but I guess the oncologist will discuss the fuller details. Basically following our discussion the decision will be wholly mine and no repercussions whatever I decide which again is really good.

I'm really quite lucky as my local hospital in Bristol is a regional expert lung cancer centre with patients coming from all over the place. Nowhere is perfect right but as things go over all I think they are really good. Also, the oncology centre is basically right next door and all easily accessible for me. I am also lucky in that my general health prior to all this was very good - my breathing tests were all above expected ratings, BP, SATS and weight all good. This has obviously contributed and will continue to contribute to my ongoing survival (we're all survivors for life basically aren't we now ).

So far as contacting people for any questions etc is concerned, you are first assigned a specialist cancer nurse when you attend for your first tests with the Respiratory consultant, and you are then assigned specialist thoracic nurses when the multi disciplinary decision is to operate. You are given full contact details including telephone and email, and personal cards and encouraged to contact any/all of them at any time whilst you remain under the care of the hospital which is brilliant.

Once your diagnosis is confirmed the cancer nurse provides you with a whole pile of leaflets and booklets and information from Macmillan nurses, the Roy Castle Foundation (including a video), Cancer Research and lots of other stuff including nutrition, physiotherapy and holistic info, etc - again I think we are very lucky in this area as no stone appears to be unturned.

The only issue here, is as I guess everywhere else, as the NHS has it's own mounting problems, including staffing, costs etc and this can lead to worrying delays sometimes both for tests, diagnosis and treatment. On this point, I'm a firm believer you have to be your own advocate and push and push to get an end result which is what I did. This isn't an issue due to the medical staff but normally an administrative issue, as administrators appear to run the show for appointments and operations and have no idea of how to prioritise. This is why it's essential you stand up for yourself and persist.

My next appointment to see the consultant will be in 4 months time although I thought it's normally 3? but I think they're allowing for the fact that I will be seeing the oncologist in the interim so it will be 3 months thereafter.

I am also totally supported by my management in work (one of the managers came to my appointment today at my invitation), and they don't want me to worry about work or thinking of returning until I am totally ready which I realise is absolutely amazing.

I think your story is inspirational and I commend your positivity and endurance and thank you so much for taking the time to respond to me.

I wish you ongoing success and good health x

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That sounds really positive. I'm glad you have a CNS - I didn't know they existed until I attended a Roy Castle conference almost 3 years after my surgery! When I asked my consultant at my next appointment if the Trust had any, I was introduced to 2 of them. I was treated at a district General hospital where patients are sent somewhere else for surgery (tertiary thoracic centre), somewhere else for chemo/radiotherapy, PET scans and back at DGH for follow up. This is another cause of the variability in the UK stats - as the logistics of moving patients through the system and the distances involved can be immense making rapid clinics such as those done at specialist centres very challenging. Unfortunately not everywhere can be a specialist centre so it's really good you're experiencing what sounds like good care. I'm also pleased that you're getting information in the form of booklets etc. When I visited my local DGH patient information centre last year and asked for Roy Castle lung cancer information, I was handed a copy of his biography! I've since 'donated' a lot of the information I carry around in my car for opportune distribution to their centre including the latest campaign materials 'hashtag Like me'. Your approach and attitude are great - I agree - we have to advocate for ourselves. The time intervals sometimes lag if a consultant has a holiday or another clinic booked but I'd agree - if you're seeing somebody else, in the interim, that's good. If your lead consultant is the surgeon, he'll deal with the overall issues and the oncologist the specific systemic anticancer treatment issues. They will also very much go by your response and recovery - I was pushed into annual check up quickly - too quickly some have said as I had complications in the intervening period but I also saw the increasing gaps between consultants as a good thing so I could get on with my life. I saw the consultant in the January (surgery in December) when I received my diagnosis, then at the end of March, then June, December then annually thereafter. Like you I was fit prior to surgery (swimming 3-4 times a week 130 lengths) and have gone onto increase that in the years after my surgery whilst working and travelling for work and leisure. Delighted you're well supported at work too - sounds as if you have all the structures in place to help - good luck with your recovery.

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Than you again and once more I've got to say your achievements and positivity are inspirational. :-)

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Hi, I had my upper left Lobectomy in May, they couldn't take away all my lung as I would have been left in a wheelchair on oxygen. They found another area on lower part of lung but unsure of what it is. Had a call today from specialist nurse to say I had been discussed at MDT meeting today. They are not sure if the area is cancer, so they have decided to see me again in 6 months for further scan. Not sure if I am happy with this or not, as I was expecting radiotherapy. But hopefully they are doing the right thing and it will be OK. But as most of you know, you have the wee voice in your head saying is this right. But hopefully I'm worrying about nothing and everything will be OK. Hope you are doing well x

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Thank you for your reply and I'm sorry to learn your symptoms are clearly worse than mine and you still have a huge question mark hanging over you. Personally, if I'd already had half my lung removed for cancer, and there was something suspicious on the remaining half I could not and would not wait 6 months for a further scan. Of course I do not know all the facts around your particular diagnosis, prognosis and any treatment but it does seem to me that to leave a suspicious site in situ for 6 whole months is a long time. Recurrent cancer can spread quite quckly if that's what it is, or metastasis could commence. I'm not trying to alarm you but it's just points of concern I would personally have. I would contact the thoracic nursing team/cancer nurse specialists and say you are concerned at the suggestion wait and see and what is the specific reasons for this? Don't leave a voicemail as these often get forgotten, but email them (they will respond then). Tell them you are concerned that any future prognosis could be potentially dramatically changed if it is cancer and just left to fester with no treatment in the interim. Ask the nurses why the MDT think in this instance it's fine to just leave it an ask for specific comments made and what their train of thought is. At least you will know that you've one everything you can rather than just accepting what they say. Be your own advocate! Good luck. :-)

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Hi,

You have been given very good explanations regarding your post from a variety of well informed members on the forum.If you would like to speak to one of the nurses please don't hesitate to call the Helpline Freephone 0800 358 7200.

Best wishes,

All the team at the Roy Castle Helpline

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Hi I'm a little confused. Is this reply addressed to myself or was it meant for Kenzie123. I ask because I haven't raised any new points on this chain = just tried to help another. Thanks :-)

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