Evening, I had a call today from my cancer consultant.
They have discussed my case and note the following.
The full body CT scan PET scan has confirmed there is no other cancer found in the body. They recon due to my bullous emphysema if they try to get biopsies it would most likely cause the lung to collapse and they might not be able to save the lung.
They could leave the 2 cancer nodules alone and scan me every 3 moths to see if they have grown etc or go straight to surgery and remove a third of the lung containing the 2 cancer nodules.
All my stats have came back stating I am very fit and healthy even my lung function sprioromoity test came back looking great with a FEV1% of 92%, not bad for someone with wide spread bullous emphysema in both lungs.
So the question I pose to my community of experts, its a no brainier to have the third of the lung removed, but will i be restricted after the bad part is removed, is the operation dangerous, what like will the recovery be and any other help-advice would be much appreciated xxxxx
David1968
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1968
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My wife had a small coin spot lesion in her upper left lobe,diagnosed as cancerous by pet scan,the normal procedure at the time was to take a biopsy,which as it happened was proven to be a non small cell cancerous tumour,what we didn't realise that the procedure in Wythenshawe hospital was then to do an immediate upper left lobectomy which was done,there then followed a 5 day stay in hospital ,although she was very uncomfortable and with some pain moderated by mild morphine based pain relief there were no further complications.no cancer cells were detected in the lymph nodes and no chemo or radio therapy where required.
Recovery at home would normally take approx 6 weeks,starting with initial breathlessness but as the remainder of the lung expands to take up some of the space vacated by the removed lobe and with background pain relief and an exercise regime that is encouraged to start from day one and increase gradually she was walking at least 3/4 mile within 4 weeks and hardly breathless.unfortunately two weeks later she suffered a massive stroke as a result of a blood clot.i believe this clot may have originated after the trauma of the lobectomy but i have no proof and i only mention this as i would caution to take post operative care with regard to monitoring for possible dvt and make sure that your Gp is aware that you have had major surgery and require diligent observation.
i am sorry this is so long winded and i would personally recommend that given your general good health and current lung function you opt for regular monitoring of the existing tumour.that is of course if radio therapy is not on offer i believe that would be a safer way of rapid removal of the tumours.if i knew half of what i do now about lungs.stroke and general health procedures i would never have let my wife have her lobectomy.
David, absolutely have the surgery done asap, preferably removing a complete lung lobe. This is what I had done 6+ years ago. Recovery was not awful, just make sure you get up and about asap, and do the breathing exercises. Become an expert at using an Aerobika or other flute like device while on the iPad or watching tv. In my case, the lung lobe full of cancer also had a huge emphesemic bullae so it had been of little use anyway. You will get through it just fine. All Best Wishes, judg69
Hi 1968, I had my right top lobe removed four years ago due to cancer and it has slowed me up, unfortunately now the middle lobe has now collapsed and is like a pancake and can't be reinflated, so I'm on antibiotics all the time trying to fend off infections......I have to say each of us responds differently and it could be a walk in the park for you, I wish you well in your decision x
You should be having a meeting with the surgeon, who will discuss all your concerns with you inc. any underlying problems you have that can affect the outcome of the operation. I wish you good luck.
Hi my Mum had the same her lungs are bad she is in her 70’s but tests came back good for op so she had it they went in and took a wedge out of her lung. Recovery was quick she was in hospital for 3 days after and then Home. 2 Years later still cancer free. I hope that this helps. Good Luck x
Given the news you have I would think deeply about your choices. The course you choose has to be yours. I would go for removal of the tumours before any spread can occur. But just a thought, my late husband went for second opinion could that maybe help you decide, you can request one and usually in cancer it is done quickly. My hubbies was not lung cancer but as predicted an operation was not the best for him. All I can say is good luck & best wishes with which ever decision you make.
I had a nodule on my lung they recommended surgery without a biopsy I got a second opinion and they said they would even take more. It didn't feel right but they had a panel of nine doctors saying 99percent sure it was cancerous but with the research I have done because of the size of the nodule it was probably benign this fell upon deaf ears. I wasn't on oxygen at the time. After the surgery the doctor made me walk I told him it was to soon, he insisted. My lung collapsed all tubes had to be put back in. They had me on so much pain medication my kids thought I was going to die and had me physically transferred to another hospital. They got me off the drugs and I went to my son's house to recover a few days later I told my son I couldn't breathe had to be rushed to hospital my meter said my oxygen level was at 98 percent but I was unconscious and had to have artificial breathing. I was in the hospital for 3 months I had gotten a staph infection at the other hospital. The list goes on. I wish I hadn't had the surgery now but at least I am alive barely. I am working my way back to better health but it has been a horrible journey. I hope yours will be a much better one. Jane
Good Morning Dave, From all the Positive replies and taking into account your young age at 50 and Fitness Level Go for it. My Friend had it done 3 years ago and she is well and does her exercising with me at our Breathe Easy Group. I also had a Nodule on my Left Lung during my Assessment for Lung Transplant, I had to wait 3 months to see if it had Gone /shrunk/ grown, Luckily it didn't grow so I was Put on the Transplant List after 3 months of waiting.(2 Years ago). I have had 4 valves in my Right Lung, and although on Oxygen still, I can do so much each day. Remaining Positive & Exercising, eating correctly , all Helps. Good Luck Dave, You know your own Body, Do what is Best. Love n Hugs , Carolina XXX
Hi David. It’s a tough decision to make. I can only speak for myself. When I had breast cancer I couldn’t wait to have the operation. It was a relief to know the cancer had been taken away. If you otherwise feel reasonably fit there is no reason why you shouldn’t make a good recovery. Whatever you decide, I wish you well.
I’m thinking take the best advice available, but cancer spreads so try to deal with it while you’re young and strong. My husband was in a similar choice position three years ago, operation or not. It was a huge decision but went for the op, we felt he was in the hands of an excellent surgeon at the Liverpool Heart and Chest Hospital....I did my research!
However in doing that research I found that the surgeon was involved in a national trial for open surgery compared to some sort of laser type ‘keyhole’ surgery, yes, for lung lobe removal. We were going to push to be part of that trial.
As things worked out though, John’s biopsy via rigid bronchoscopy led eventually to test results proving the large nodule was benign. Still had to have it removed due to blockage being caused, and partially collapsed lung, but that was done via two more bronchoscopies, under general anaesthetic, first to remove, second to check results and freeze the site to discourage.
He’s recently had another CT scan...results next week...but no symptoms and they’ve made him wait three months, believe it or not, for the results. Presuming slow response is good news....they were very quick first time round.
So explore all options available to you. We were willing to try the modern version for removal....less chance of complications as we saw it and swifter recovery ....but can’t give you actual feedback.
Good luck whatever you decide. We’ve heard lots of stories of good recovery. My brother had a lung lobe removed years ago, when he was just six years old. Recovery took a while but he’s a strong, energetic man now....70 last month. All the best ❤️ Penny xx
Hi David, I am no expert so disregard this if you wish. I have just discovered a fairly new way of treating emphysema which in my case is severe. I became desperate and have trawled the world by emails & phone calls to find something that COULD improve my situation (Nothing comes with a guarantee) but have until now have been refused due to a cancer.
This process appears to by-pass the cancer problem but has problems with administering the medication by IV in the UK, unless you can do it yourself. They call the process"mesenchymac stem cell". UK specialists are behind the rest of the world in this regard and only recognise treatments that are UK approved and would not recommend anything other than tradition medications/methods. The USA, Germany France , Thailand, India and other countries R&D all sorts of alternatives, this being one such outcome.
I can understand your plight but If you do decide on the removal of part of an infected lung you would notice more effect on your energy levels (Which are probably poor due to the emphysema already) and I can't comment on length of recovery.
I'm at a stage where anything has got to be better than now so I'm giving it a try but eventually may have to accept the trip to Mexico if I can't find someone who can administer it, monitor the dosage and monitor me after the treatment. I am told that in some it can act within 3 days, with me it may take 3 weeks. At least it's warmer down there
I had a third of my lung removed back in 1985 but for other reasons other than cancer. There was a period of soreness but cleared up after a year. Diagnosed with emphysema back in 2007 but still alive. Good luck.
Good news it hasn't spread. Whatever you decide I hope it all works out for you, it's good that you are otherwise fit and healthy but it must be very worrying. All the very best to you for a successful outcome
Great news re no other cancers found David - wonderful! I had the bottom lobe of my left lung removed approx 10 years ago due to cancer. I had very little pain but there was quite a bit of breathlessness on exertion. However, did the walking religiously once out of hospital and got stronger quite quickly, with improvement in breathlessness more or less daily. Needed no chemo afterwards and, touch wood, still in remission. For me the operation is definitely the way to go. Good luck with your decision David x
The decision is yours, me personally, I would want rid off it. If I didn't, I'd worry about it spreading all the time, so it would be the op for me after a good chat with the Consultant first about recovery.
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