I have suspected lung cancer and am waiting for result of EBUS bronchoscopy. I’ve been monitored with CT Scans for the past 18 months. There are 2 suspect nodules that have recently grown. I was supposed to have my right upper lung lobe removed early December. I was kept waiting for approx 8 hours only to be told my operation was cancelled due to the surgeon running out of time and equipment! It was a planned RATS procedure. Since then I’ve had a further CT scan and EBUS. After an appointment with the surgeon 10 days ago he informed that he missed a nodule on the lower third of my rt lung. A surgical colleague of his pointed it out and that he’d now have to remove the whole of my right lung. I was shocked and devastated as I know what an impact it’s have on my quality of life. I’m also a carer for my husband who has dementia. I also feel I’ve lost confidence in the surgeon. I wish I could have one of his colleagues!
I was also told in a letter that I could have radiotherapy as an alternative with a possible cure of 70%. The latter is what I’m opting for rather than surgery. Any advice would be much appreciated. I have an appointment with the oncologist in a few days. Thank you.
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Hi Deni, sorry to hear of your dilemma. I cant really advise you as I am not up to date with oncology procedures , as it was almost 11 years ago since I had my lung cancer.
What I did want to reassure you of is I had my whole right lung removed , and it doesnt really affect your quality of life. It can take a while for your remaining lung to expand and get even stronger but it does. Have a word with your Cancer nurse specialist about any doubts you may have. I wish you well whatever you decide on. 😊
Thank you for your reassuring reply. It’s good to hear you’re doing well. I do have a lot to consider about surgery or radiotherapy. I wish you continued good health.
So sorry to hear about your suspected lung cancer. This must be a worrying time for you. The cancelled procedure and revised operation plan must be adding to your anxiety. This anxiety is understandable given that now you face a more radical surgical approach than what was originally suggested.
It is worth bearing in mind that surgeons often collaborate with each other to ensure that nothing is missed, and that could explain why another surgeon picked it up, however you should discuss your concerns with the surgeon and the oncology team. If you feel the same after this discussion, then you could request a second opinion.
With regards to treatment options of radiotherapy instead of surgery, then this is also best discussed with the Oncology team to see whether radiotherapy is still an option. It might be helpful to write down a list of questions to ask. I can understand your concern regarding the impact the potential surgical option could have for you, but after a period of rehabilitation, it is entirely possible to live a normal life with only one lung. You might find our information booklets helpful to read prior to your appointment.
These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.
Lung cancer treatments – Roy Castle Lung Cancer Foundation might be especially helpful.
It is important that you have support during this time, especially since you are also caring for your husband.
Once you have been diagnosed with lung cancer, you should be allocated a lung cancer specialist nurse, and they will be a great source of information and support, one can be allocated to you by your Consultant or GP.
We at Roy Castle offer a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...
You could try this website from Cancer Care Map which provides services of support that are local for you: cancercaremap.org/
I hope some of this information is helpful but if there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Thanks so much for your helpful advice. I would like a 2nd opinion but I was told I’d have to go to another health trust as I can’t see another surgeon from the same trust. That means going out of town. If I do this privately which I’m prepared to do then I was told they can’t access my records. It all seems a minefield to the layperson.
Could you please advise me on what questions I could ask the oncologist? That would be helpful for me.
I suspect someone has been a tiny bit economical with the truth.
Me? I have private health insurance so I get a mix of NHS (1st port of call and referrals) and private (actual treatment). I also have a house in the midlands and a flat in London (yeah, I know, sorry!) What this means is that I get a real mix of different NHS health trusts as well as private hospitals. My point is that I have NEVER had ANY issues with anyone sharing my confidential medical records. I have always made a point of signing wavers to my rights to confidentiality - as far as I'm concerned anyone can access everything and welcome.
Access denied to medical records is just the official default position. Sign the relevant forms and the obstacles go away. Typical bureaucracy - you don't get unless you ask, and nobody says what you can ask for.
Sadly your story is too common since the pandemic with delays impacting care and by the time somebody is seen, things can have deteriorated since previous scans/results. I can imagine your disappointment. I had my open thoracotomy in Dec 2010 (minimally invasive surgery via RATS or VATS wasn't around then) and had my upper left lobe removed.
The advent of minimally invasive surgery has made a major difference in recovery time, reducing infection risk and can even be used for pneumonectomy (removal of the whole lung). I was surprised to learn some years ago that my uncle had his whole lung removed for TB in the 1960s of which I had no idea. He was always a fit and active man and this was the recommended treatment for that condition at the time.
Sometimes our minds can negatively impact our treatment decision choices - believing one way will leave us worse than another without always having heard from the other disciplinary professionals. Surgeons tend to provide a lot of detail about risks as they are professionally bound to do whereas oncologists don't always reveal the impact on quality of life from some of their treatments. I've met and worked with many patients who said they were never warned of not only the side effects but also longer term late effects from other treatments like radiotherapy and chemotherapy. Radiotherapy is offered in many different forms, doses, timings and intent so it's important to discuss with an oncologist what you'd be looking at - whether ablation (SABR) or another type.
If surgery is still an option which it sounds like it is, they must be confident that your health/you could withstand the procedure and recover well. My surgeon told me that recovery was up to me - the more active I could be, the quicker my remaining lung would develop and take up the space. I was a regular distance swimming before my surgery (130 lengths 2-3 times a week) and despite not swimming for 6 months after A&E admission and post surgery, I rebuilt up the distances from 3 months after my op to swim much further than I ever had before. Many find that if they get breathless they give up and then sit/lie around which prevents the lung redeveloping. Any activity that makes us breathless (running, rowing, etc) is designed to develop our cardiovascular system and it's natural we'll breathe differently than if we were sedentary but pushing on and building it up a little at a time can help recovery for better quality of life.
I met a man who'd had a pneumonectomy on one of my clinic follow ups - he'd only had the op a few months earlier and was playing golf and walking his dog and he and I explained to an older woman waiting in the clinic who'd been written to about potential lung surgery about our experiences. She'd arrived intent on refusing treatment - saying she had had her life - her daughter sitting next to her, nodded in agreement. Having chatted to the two of us for about 20 minutes, her questions had moved onto 'how soon after surgery would I be able to drive?' . She felt it important to hear from those who'd experienced the treatment to help her decide.
Hope you get some more information before you decide. BTW you don't need to go private to get a second opinion - every patient is entitled to a second opinion under the national optimum lung cancer pathway and NICE guidelines. Your GP can make a referral to another Trust. This link may help you. good luck whatever you decide - make sure it's a fully informed decision.
hi Janette and thanks for your very helpful response.
I was angry and scared when the surgeon told me I needed a pneumonectomy instead of lobectomy as over the 18 months I’d been scanned and had a bronchoscopy there was another nodule in the lower rt lung. I felt if I’d been operated on earlier that may not have been the case. I exercise and was told I was fit enough for surgery.
Whilst I’m aware I could live with one lung I was told there may be something in my other lung but I didn’t need anything doing about it at the moment. I was fearful that if it did develop I’d need a lobectomy of my remaining lung which freaked me out.
I opted for radiotherapy rather than surgery as I have COPD and visit my family in Australia annually. I worried I might not be fit to fly (I’d be assessed) and may end up on oxygen permanently.
Just hope I’ve made the right decision but time will tell.
I'm sure if you had all the relevant information about the two different treatments and what the pros and cons of each were and longer term impacts for both too, then your decision will be the right one for you.
I've flown to Bali, Thailand, Malaysia, Greece, Austria, Germany, Spain, Vietnam, Cambodia, Belgium and Slovenia for work and leisure since 2016 and always take out insurance.
When I spoke with the founder of an insurance company specialising in cancer, he explained the high premiums for lung cancer aren't only to cover the risks of cancer and treatment effects but also the potential for respiratory issues - from change of climate, humidity, temperature, recirculated air, and any other conditions which may require medical evacuation to other countries/hospitals. That made sense to me having been hospitalised every year between 2015 and 2019 with nasty chest infections - that all affected my breathing but eventually responded to appropriate medications.
Good luck with your treatment and your travel down under.
Thank you Janette and good to hear you’ve flown to some exotic and long haul destinations without problems…so I’m assuming your yearly chest infections weren’t caused by travel.
I came back from Vietnam in October and in December had pneumonia but think that was unrelated... had bronchoscopy organised1/3 and had booked trip to Cambodia for April and couldn't organise travel insurance until was out of investigation so was told there was nothing to worry about and organise my insurance.
When I returned from Cambodia I had a follow up appointment with consultant and he said he didn't want to see for 6 months but within a week I was in hospital with pseudomonas. I was told they'd grown/cultured this from the bronchial washings done during the bronchoscopy - it's a healthcare acquired infection resistant to antibiotics so likely picked up when in for pneumonia.
So no, not related to travel - more like winter bugs. Thankfully covid 19 stringent hygiene measures (lockdown, less mixing, hand sanitiser, hand washing, face mask etc) has resulted in me not being hospitalised since Jan 2019. The last 2 chest infections (one in December and one now) I presume are from winter bugs in circulation.
I am glad you reached out by telephone today, and it's helpful that you have had some good support on this forum. I will email you the details we discussed, hopefully this will help prepare you for your appointment.
As a reminder, our free phone nurse led helpline number is on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
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