Even though I've commented on other posts, this is my first.
In July I coughed up blood, saw the GP who organised a chest x-ray. The GP called me an hour after the x-ray to tell me I had a 6cm shadow on my right lung and it could be cancer. After meeting a respiratory consultant, I had CT scan, PET scan, lung function and EBUS in September. Although no malignant cells were discovered, the PET showed a 7.8cm tumour which was active.
I had a thoracotamy to perform top lobectomy on my right lung on 10th October at University Hospital North Midlands in Stoke. The TNM staging was T4N2M0.
Today I saw the surgeon and was informed there were NO cancer cells in the lobe or lymph nodes. They have been sent for retesting just in case, but he doesn't expect anything to change. I have a follow up appointment in 6 weeks with another chest x-ray then. If all okay, I will be discharged.
I can't tell you the relief my wife and I felt when we were told. I hugged everyone. I still had to have the lobe removed, as the tumour was aggressive and growing. However its cause is unknown. Possibly pollen or dust or another particle.
Thank you to all the staff at UHNM and Princess Royal Telford, especially the Macmillan Lung Cancer Nursing team at Telford. And of course the Roy Castle Foundation, for all its support to those of us fighting lung cancer or other related issues.
Ian
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Ianhick
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Thank you. It is the best outcome. I screamed in happiness in the car park and hugged all the staff as we left.Unfortunately, yourself and too many others have to experience the bad news. My love and support will always be there for you and everyone on this forum 💖💖
Thank you for sharing, the last few months must have been very tough for you and your family. It is great to hear such inspiring news and will give many others encouragement and support moving forward through their own journeys.
What a relief to hear from the surgeon no cancer cells, I think a family celebration is in order
How many more are having lobes removed that are not cancerous - ivd never heard of this before, delighted for you but equally concerned! That even with an ebus they can't tell if it us cancer.
I'm not sure how many instances where an EBUS doesn't harvest cancerous cells, I think most of the posts I've read indicate that the EBUS is very effective. I knew the EBUS hadn't shown any cancer cells before my operation. However the PET scan showed that the tumour was very active and therefore growing, the surgeon showed us this on the computer screen. Also a 7.8cm or over 3inch diameter tumour was taking up almost the entire top lobe and during surgery it was discovered to be attached to my chest wall. So I had a third of my right lung doing nothing, plus a tumour that was not only large but actively growing. In fact if the original x-ray is correct at 6cm and it was 7.8cm just under 2 months later, it was growing at a rapid rate. Whether it contained cancer cells is ultimately of no consequence, I had to have the operation before it attached to other lobes or my trachea or heart. Both the surgeon and lung cancer specialist nurses, said that the EBUS doesn't always retrieve cancer cells, but after surgery tumours are found to be cancerous and they expected mine to be the same, I am extremely fortunate it was benign. Ultimately, an EBUS is just one of a number of tests carried out to identify tumours and is not infallible. In my case it was the PET scan that was the decisive test.
I'm sure surgery is not carried out unless absolutely necessary. I'm certainly glad it was an option for me and have no doubt it saved my life.
Thanks for posting - and agree with your comments about removing the tumour irrespective of malignancy. In oct 2010 I'd gone to A&E and a lesion found on my left lung but was misdiagnosed and mistreated as uncontrolled asthma. Many weeks later (after the CT scanner had been repaired) it showed on the CT scan as a large mass and on the PET scan when I saw the thoracic surgeon and asked whether a biopsy should be done when he recommended surgery. Hhe said that whatever it was it needed removing due to its size and position but until they found out otherwise they were treating as if it was cancer and that it would be sent away once resected to the lab to find out what it was - I had the results mid January 2011 and it was mucinous adenocarcinoma (7cm tumour) so mine was classified T3. The T relates to the size of tumour in accordance with international guidelines. My surgeon said the PET wasn't definitive but that not all tumours take up the contrast agent so our two stories show the importance of not only having the many tests now available for lung cancer which are used to make decisions but also that when tumours (irrespective of malignancy) are large and interfering with structures that are crucial like the lungs for breathing/everyday life, then I'd always respect the surgeon's expertise and recommendation. I had no idea until I became in lung cancer research at the end of 2013 how few UK patients are eligible for lung surgery - although most are now carried out as keyhole/minimally invasive rather than than the open thoracotomy that I experienced.
A colleague of mine who lost his wife to lung cancer was told a few years ago that he had kidney cancer and his kidney was removed only to find out that it wasn't cancerous so it's not limited to lungs but there are very few 'benign' resections undertaken in the UK compared to some countries.
Hope you and your family are celebrating and that you can get back to an active life - which is extremely important to help redevelop the remaining lungs.... good luck.
I agree. As with most diagnosis, it's the sum of many parts that give the whole picture.
When one of the top thoracic surgeons tells you it's a large tumour and he will be doing the surgery himself and only 10 days later, you take notice. Of course I'd prefer not to have had surgery, but it wasn't really an option.
Thanks, we were ecstatic yesterday. Unfortunately my sister has to have further surgery and chemo for her breast cancer, so our joy was curtailed a little. Luckily no mastectomy or cancer cells on her lymph nodes. The agony and ecstasy of cancer treatment eh.
Same to you. Your story was a real inspiration to me in the early and darkest times. It gave me hope that there was light at the end of the tunnel. May you continue to have good health and continue to inspire those on this difficult journey. Thank you 🥰
Likewise - I was similarly impressed when I met survivors who'd survived several years and then when I became involved with research in 2013 and met 3 guys who were 15, 18 and 17 years out from diagnosis..... sadly 2 passed away in 2020 and 2021 but not from their cancer but one of them was at a lung cancer conference I attended for the last 3 days. There were 2 cancer patients telling their story as never smoker lung cancer patients - younger, still working, very active - and their faces were a picture when this guy asked for the microphone and said it was now 33 years since his diagnosis! We need to hear more from survivors to give others more hope..... keep on keeping on...
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honeyyorkie
After two negative biopsies doctors still believe is lung cancer.
Do I still say I have cancer?
