Recurrence of lung cancer after 3.5 years

I’m just posting because I’m looking for others in the same / similar situation who can share their experiences with me. My situation is described below but in short I have stage T2bN1M0 diagnosis and recurrence of the tumour next to the original site; am wondering if others have decided not to have treatment and if they felt it ok to do that or felt pressured to fight on regardless even if they didn’t really want to ?

What can I expect, physically and psychologically, and how do people deal with the terminal side of recurring cancer?

At present, I don’t think the trauma of treatment is worth surviving another few years for (Or not!).

I don’t want to sound negative, just realistic.

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I was diagnosed with stage T3N2M0 lung cancer in right lung in 2013. I smoked for about 40 years so it’s not surprising. I’d also been in a fire which damaged my lungs and throat too. Because of my physical condition the oncologist didn’t want to give me treatment but I requested chemotherapy. She gave me 6x 75% of the normal dose which shrunk the tumour then RT finished it off. I was in remission for 3.5 years.

Over Xmas 2017/18 I was coughing up blood then saw Dr had X-ray, scans etc but no treatment yet.

Originally I didn’t want treatment but did meet with the surgeon to discuss what happens when they cut your lung out. He told me that I’d feel like I’d been hit by a bus afterwards. Even though I was in a major accident 5 years ago I was going to go ahead with surgery but then read that due to the nerves that run along the ribs about 50% of patients suffer chronic nerve pain forever after. I already have chronic nerve pain on that side all through my arm / hand due to crushed vertebrae in my neck (plus chronic back pain and other stuff) and the thought of possibly living longer but with more pain and extra breathlessness put me off. Also, the survival rate is 50% which isn’t high enough for having to suffer more pain.

Since then I went through the torture of having an EBUS procedure whilst conscious but they didn’t get cancer cells so can’t give me immunotherapy treatment.

Now I’m back to thinking I don’t want any treatment and if it’s my time then I might just live as well as I can for however long I have left: quality of life sort of thing.

[judg69]

Hi Jenski55, sorry to hear of the recurrence . All I can tell you is if I were you, I would be getting the lung surgery ASAP. Not sure if it is a lung lobe or a total lung in your case, but my recommendation remains: get the surgery. Please note I do not recommend this lightly as I have had a full thoracic lobectomy with nodes also removed, maximum radiation and 2 years heavy duty chemo. After 6 years now, my latest CT scan shows a small growth in my other top lung lobe. I go for a second scan ( after 3 months ) in two weeks time. If it does prove to be cancer, I will have it removed or undergo more chemo ( I had max chest radiation with the other lung and I do not believe I am able to have additional radiation to the chest ). Hopefully this is helpful and not just muddying the waters. You sound like a positive person and I wish you all the best, judg69

[Hidden in reply to judg69]

Hi judg69, thanks for your fast reply! I’m actually interested in people’s experiences with not having treatment but thanks for your advice anyway

Best of luck to you and fingers crossed you have a positive - as in negative result - scan result. All the best j55

[Mary43 in reply to Hidden]

I had lung cancer had my right bottom lobe removed . The surgeon said he got it all but the oncologist said she recommended Chemo. I got a second opinion and was told I did not need chemo they would keep checking me other ways. It will be 3 yrs in Oct and so far good.

[Steph60]

I would get a 2nd opinion on having the surgery, and inquireif you can have video assisted surgery to remove the ne essay lobe. I had my upper right lobe removed via video assisted surgery and did not experience any lasting nerve pain. The decision to get treatment or not is very individual, but just make sure you have all the relevant info when making your decision.

[Hidden in reply to Steph60]

Thanks for the advice, Steph60. What is your experience of the surgery and how long have you been cancer free? did you have pain before your surgery? How long did it take to recover? Thanks, J

[Steph60 in reply to Hidden]

I have been cancer free for 4 1/2 years. My surgery went smoothly, I had an epidural prior to being put under to help with the pain (which I would totally recommend). I was in the cardiac ICU following surgery for two nights and moved to a regular room for a third night, before I was released. In the hospital they gave me pain med’s via my IV and when I went home my surgeon gave me Tylenol with codeine for pain, which worked for me. It is hard to tell you how long my recover took since a month after my loctomy surgery I had surgery to have my mitral valve repaired, and then the following month chemo started. I will say that 3 weeks after my loctomy surgery I was driving. My surgeon also had me walking every day immediately after surgery - twice a day for about 5 minutes and increased that amount of time to get my strength and energy back. I hope I answered everything, let me know if I missed something or if you want more info. Wishing you the best.

Stephanie

[kri312 in reply to Hidden]

I had VAT's 4/30- for a RUL wedge and RLL lobectomomy for stage 1. No treatment after that - I am back running and to the gym and went for a 2 hour hike yesterday! Occasional nagging cough is all I have- I didn't think surgery was difficult and went back to work a week later!!! I wanted it out vs. waiting and watching - so no surgery wasn't an option! Best of luck in your decision making!

[joeyroe]

That is so terrible for you i am so sorry to hear that, if it's any comfort to you 2 people i know have gone through the same as you and both said no more treatment as they had enough, that is 3 years ago and they are still alive and happy they stopped treatment. one of them from time to time has to go back to the Hospital for scans etc and the other Man is feeling good and going to Spain on holidays.

I am only telling you this but find out a lot more before you make up your mind.

God Bless.

Joeyroe. (margaret)

[Hidden]

Hi Margaret, thanks for telling me about your friends. I do feel quality of life is more important atm though might change my ideas again. Luckily the internet is infinitely informative on the subject!

Are you currently in treatment or decided not to?

Kind regards J

[ckmartin]

I had lung cancer last year and had one part of upper lung removed. Pain the first few weeks bad but it gets better. One year later still have some pain but not much. If this would save your life look at it again. Hard operation but if it can take care of this cancer very worth it I am 72 and don't know when it could come back. Praying for you and if I can help please let me know.

[Hidden in reply to ckmartin]

Hi ckmartin, well done and I wish you well in your recovery!