Lung cancer

[Iainca]

Hi all

One year ago I was diagnosed with lung cancer in my left lung the lobe superior to be exact. My treatment in France has been amazing I must say firstly nothing has been to much even through Covid !!! I was told to start with that the cancer was inoperable but after talking to the surgeon who fitted a catertiar he said he would review my case, in the meantime I had started chemotherapy which was a 6 month program in amongst the operation last April to remove the lobe superior and the lymph nodes which are along side or in between my lungs !!!! After that 33 sessions of radiotherapy all very tiring and my recovery seems to be taking a long time as I’m getting out of breath doing the smallest of things I’m not sure if my ribs are still broken, this is eight months after the operation also when I cough I’ve a new pain in the left side of my chest !! I’ve a mri scan booked next Friday just to have it checked out, the problem sometimes is obviously the language as I’m English, the Doctor is always telling me it’s no problem for every month of treatment it’s normal to have two months of recovery but reading the net it seems to suggest I should be recovered in 3 months so if anyone has any input or experience I would love to hear, thanks in advance!!!!

[Denzie Moderator Volunteer]

It’s not unusual for any nerve pain to continue for years after a thoracotomy. When did the radiation end? If it was in the last few months this could be pneumonitis. My other concern at this time would be for a pleural effusion or a blood clot.

If it gets worse before Friday or if you experience an elevated heart rate call your oncologist and head to the ED.

[Iainca in reply to Denzie]

Thanks for your reply DenzieMy radiotherapy ended 3 months ago I’m feeling great in myself but the breathlessness is annoying so hopefully the scan and Doc can tell me more x

[JanetteR57]

What type of surgery did you have? thoracotomy or keyhole (VATS)? I had open surgery for my upper left lobe in Dec 2010 and was back at work and swimming by the end of March 2011. nerve pain can come and go for a long time - even now if I bend down suddenly it winces me but a small price to pay for still being around. Breathlessness and coughing with pain could also be a chest infection. I had a rib cut for the surgery but generally they spread the ribs if open surgery (not break them) and not at all for keyhole hence my question. I had a number of chest infections in the years since my surgery and some have hospitalised me but the symptoms of breathlessness, coughing with pain or stress incontinence were common to all of them. Thankfully scans revealed nothing sinister and with targeted treatment for the specific infections I recovered. Breathlessness can also be associated with heart as well as lung issues although for those of us with lung history we can jump to conclusions. In Jan 2019 I was hospitalised and put in isolation and then had almost 9 months of extreme breathlessness - could barely walk a few metres from somebody who'd been extremely active - regularly swimming, travelling for work and leisure and walking. After lots of investigations my logic looked back at what had changed - not just the infection - and found an inhaler had been changed - looking at its information leaflet and online suggested it could cause heart rhythm issues (by then I'd been told I had possibly heart failure or enlarged heart) so I stopped it for 3 weeks (before I saw my chest physician) and explained what had happened. I still had a reliever if I needed it but haven't used it in a long time. He changed the inhaler back to my former one and the heart/breathlessness issue improved considerably. It is natural after any cancer diagnosis to worry about other symptoms being related but not everything will be - I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me on this. In the meantime, you might find the enclosed booklet helpful about your lung surgery and suggested recovery/milestones and hope it answers your questions. good luck with your continued recovery. roycastle.org/app/uploads/2...

[Iainca in reply to JanetteR57]

Hi Janette thank You very much for your response, I’ve not been able to talk with anyone since I was diagnosed as I’m not a great talker on my own problems!! Prefer to lock myself away. My surgery was via a 12 inch cut in my back, this all healed relatively quickly but I recalled breathlessness when I started chemotherapy, also if I bend down to pick something up I can get out of breath very quickly, I’ve a MRI and blood test on Friday so hopefully it’s nothing more than me being a woos 😂😂😂 your story looks amazing well done to you x

[JanetteR57 in reply to Iainca]

I know that feeling as I told very very few people at the time. Sounds as if we have similar scars from the thoracotomy (open surgery). Last year I was diagnosed with ILO (inducible laryngeal obstruction) previously known as vocal cord dysfunction after a whole load of tests over more than a year. Breathlessness when bending over also relates to the diaphragm not just the lung surgery and I've been told my breathing is quite dysfunctional so have had to 'learn' how to breathe properly through the diaphragm instead of upper chest as that results in breathlessness. Might be worth doing some breathing exercises and see how you get on - can't harm anyway.... good luck with your scan that hopefully will reassure you....

[Denzie Moderator Volunteer in reply to Iainca]

Please let us know what you learn.

[Iainca in reply to Denzie]

Hi Denzie!!! I have no news on my scan results yet as I’m seeing the consultant Monday! the breathing advice you mentioned has helped a lot, I’m doing upper body exercises also, I would say I’m 30%better for this, I’ve a hip replacement at the end of the month so I need to be be on form for that😂 so Busy!!! I hope your keeping well. Ian

[Denzie Moderator Volunteer in reply to Iainca]

Thanks for a great update! Are they doing that new hip surgery where they go through the front?

[Iainca in reply to Denzie]

Yes they are !!!! what a delight Denzie 😂😂😂 so a quick recap this year 2 cataracts a lung removed with lymph nodes and a new hip!! Thank God I live in France as would be unaffordable in many other countries!!! Wishing you Well x

[Denzie Moderator Volunteer in reply to Iainca]

I was in Camargue in the summer of 2019. One of our family members fell and snapped her ankle. She had to be transported to Arles for surgery, two plates and 11 screws. Her hospital stay including the surgeon, the anesthesiologist, surgical facility, and a room for 4 days was less than $4000 US (3272 €). Here in the US you can’t get a surgeon for $4000. Talk about culture shock! Since she wasn’t critical the ambulance drivers loaded her up then took a cigarette break.

[Iainca in reply to Denzie]

Morning 😂😂😂 i pay 100 euros top up insurance monthly this includes dental optical and everything else that’s it for me I pay nothing else!!! If any treatment includes cancer taxis are covered to!!! Last year my taxi bill was probably 7000 euros all paid for by the state how Lucky am I to live in Europe