Recurrence of lung cancer?

[Danni54]

Hi all. I haven't been here for a while though I have been on other forum's because of the health problems I have been left with after the lung cancer misdiagnosis and subsequent ( but late ) Lobectomy! I had to go to the Dr. today for a few reasons but I have been having similar symptoms to the one's I had before my Lobectomy and I am now waiting for an Xray. I am also due to see my cancer Specialist Nurse in January for my 4 year scan. How often does cancer return after a Lobectomy? I have pain in my right shoulder blade, under my right breast, am coughing quite frequently but it's a slightly chesty cough and the back of my throat feels dry and strange! I had all of this previously although I never did have a cough until I got pneumonia and the Adenocarcinoma was found ....for the 2nd time. The tumour showed on an Xray the 1st time but the hospital didn't mention it although it was clear on the Xray and then 15 month's later the chaos of scan's, biopsies etc. started. I have also been having niggling headaches. I don't know whether I'm over reacting , I don't usually but I do have that niggle. I know that I should wait for the Xray but I was wondering whether anybody has had a recurrence after almost 4 year's? Thank you. Take care all.

[Denzie Moderator Volunteer]

an X-ray cannot diagnose a cancer. They need to look at this with a CT to begin and a PET scan. If you’ve had any kind of systemic treatment (chemo, targeted therapy, immunotherapy) push for a new biopsy. I suggest that because a cancer can cause a new mutation to continue to grow.

If you’ve had no systemic treatment talk to them about testing your previous cancer biopsy material for mutations. By law they have to hold onto the slides for far more than 4 years. Genomic testing is rarely done in lower stage lung cancers but with progression they may be persuaded to do it.

The statistics on progression after a lobectomy are out there somewhere. I’m not sure where to look except maybe the Surveillance, Epidemiology, and End Results program: seer.cancer.gov/

As for progression at four years, it is not unusual. It’s my understanding that most cancers come back within 5 years which is why they follow patients for 5. At 12 years out , I still get annual CTs.

[JanetteR57]

Sorry to read of your recent symptoms and your concerns that it may be recurrence - my left upper lobectomy in Dec 2010 (open thoracotomy) had a good response then in 2012 I had new symptoms that might have been recurrence and had a bronchoscopy after a CT scan showed something - and I had cough and coughed up blood. In my case it turned out to be inflammation of the surgical 'stump' that had showed up on the CT scan and the blood caused by a burst blood vessel when I'd been coughing.... but that's not say I wasn't scared. Between 2015 and 2019 I was hospitalised annually with at least one 'episode' a year - chest infection, pneumonia, pseudomonas, RSV - all had far worse symptoms than my initial surgery and diagnosis but all were caused by the above conditions and thankfully all eventually responded to the appropriate treatments... It's easy to think that every symptom we might have could be a recurrence and it's true that a few do recur but many don't.... although I'm still pleased the medics do put me in the scanner or do bronchoscopies if they also fear/suspect something - better safe than sorry in my view. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things in perspective and helped me. Headaches and other symptoms including breathlessness can also be worsened by anxiety which once our imagination starts running riot, can be very real... hope you get some answers soon and get back on with living your life after cancer rather than it dominating your life.... it also sounds that after your less than optimum healthcare experience, you have good reason to have suspicions or not trust what you're told - I found counselling after my cancer diagnosis (a few years after) really helped me put things back into some sort of mental order and helped me.... maybe it would for you too? good luck.

[Danni54 in reply to JanetteR57]

Hi Janette . Thank you so much for replying so quickly and for the advice. I have had no help or support since the Lobectomy until now because I have a new G.P. and she actually listened to me and took on board what I was saying. I was so relieved! About 3 month's ago I started to feel the way I did before they eventually found the tumour for the 2nd time. I try to keep my worries under control and I know that part of the breathlessness could be a bit of a panic attack although I was quite calm previously and the medic's were surprised because I was so determined to fight the cancer. It's more the cough that's worrying me a bit because I haven't ever had a problem with coughing except when I had pneumonia. I will go for the Xray because I haven't been offered a scan but if I get any worse then I will phone the Oncology Nurse. She is due to phone me in January to arrange my 4 year scan although last year I had an Xray not a scan. Our hospital is hugely understaffed as are a lot of hospital's. I probably would benefit from counselling but the waiting list is huge.I am off to bed as I had the flu and Covid vaccination's today so I'm quite tired as we had to go quite a way to get it . I wish you all the very best. You have been through so much but you are always here to help us and I really appreciate it. This forum helped me SO much previously. Thank you again.

Very best wishes,

Danni x

[JanetteR57]

I would also go to your doctor and explain your current symptoms which may be caused by infection, virus or something else so that at least somebody else can give a professional opinion and hopefully some treatment to relieve your current symptoms..... do let us know how you go on.... good luck and hope things ease up for you before too long.

[Danni54]

Hi Janette. I hope I'm not being a pest but before I had the Lobectomy, I had pain in my upper arm's which, strangely, went after the Lobectomy. Did you have that or do you know of anybody who has had that ? That started up again about 3 month's ago. I had a blood test to see whether I can have Denosumab injection for my Osteoporosis and spinal fracture's. I have to get my dental issues fixed before I can have that. I contacted the ROS Nurses and they told me the problems with dental issues which my Dr. didn't know ! As she checked for that would they have checked for infection? She said that the blood test was fine for the injection and I know that she was checking for Calcium and I should have asked more but I have so many thing's going on that I worry about taking up too much of her time ! Mind you, I waited for ages and when I asked whether I had the right day the Receptionist had forgotten to mark that I was there! I will be having an Xray this coming week but it's amazing how little the medical profession seem to know here about cancer or Osteoporosis and they definitely don't like it when we appear to be slightly knowledgeable! Thank you again for your encouragement and advice . You have no idea what ìt means to me to have people that I can ' talk ' to and get advice from. Wishing you all the very best . Danni x

[Breezecherie]

I have a lobectomy of the upper RL in May. 2017, adenocarcinoma Stage 1A, no recurrence since. However I have a wedge resection in LLL, stage 1C, in January. 2019 NCCLC, stage IV six months later.

[Spainy in reply to Breezecherie]

What is NCCLC?