Worried about LC for 1 year
Hello!
I’m a 30 year old male, with a history of Hodgkins Lymphoma.
I was treated with 11 rounds of chemotherapy (ABVD). And have been in remission 7 years. I’ve a little lung scarring in my left upper lobe from Bleomycin but otherwise good.
November 2021 —>
I started to have a fear of lung cancer. I had noticed my platelet count slowly creeping up within the normal range (this was the trigger).
I read all about radon gas, the affects of my chemotherapy (ABVD) which can raise the risk of lung cancer, etc. This wasn’t a good idea. I know.
I had a number of full blood counts run via my GP at the time and they all came back normal. The platelet count being in the high normal range between 300-395.
February 2022 —>
I started to develop a daily cough. It was intermittent and has stuck with me since (till now).
June 2022 —>
Noticed I had developed finger clubbing, cough persisted, feeling breathless and had a yellow tongue.
My GP organised an X-ray. Which came back normal with similar appearances to an X-ray I had in 2020.
I also had blood tests: FBC, CRP & ESR. All normal.
Medications for Gerd, Asthma and hay fever were also trialed.
July 2022 —>
I went back to the pulmonologist I saw during my HL treatment. He performed a CT scan with contrast, lung function and blood tests (FBC, U&E, CRP, ESR & LFT).
The pulmonologist confirmed the finger clubbing, but said it’s mild and normal in people who had the treatments I had.
All the tests came back effectively normal.
CT scan showed a tiny focus of nodularity in the left upper lobe. Presumed scarring.
Lung function test was normal. All values at 100% predicted including the gas transfer and body box.
August 2022 —>
Went back to the GP and had more blood tests - FBC, CRP. All normal.
October 2022 —>
Got my CT scan imagery and had it reviewed by two other sources; second opinions website online and also the Mayo clinic.
The findings from the second opinions website online was the same as my pulmonologist.
Mayo clinic mentioned the same scarring but in both lungs in the apex.
Mayo clinic also performed another lung function test and a 6 minute walk test. Which both came back normal.
Again, I had my FBC and CRP checked by my GP. All normal.
November 2022 —>
I had daily headaches and worried about brain metastasis, so I paid for a private head MRI. This came back normal.
December 2022 —>
Started to have daily pain in both sides of my neck. And pain in my fingers.
I spoke again to the original pulmonologist and he has organised the same tests again in January. I have been in touch with this pulmonologist monthly since the scan in July now.
The tests I will be having are;
A lung function test, CT scan with contrast and blood tests (FBC, LFT, CRP, ESR, Bone Profile, U&E).
That’s my story, I feel extremely anxious about the newly onset finger clubbing and continued cough which is why I have pushed for many tests, second opinions and a second scan.
But I am not sure when it’s time to put this to bed and move on?
Can lung cancer be missed on both an X-ray and CT scan when it’s causing symptoms and later be picked up (6 months later)?
Are CRP and ESR good blood markers to rule it out?
What advise would you give me?
I have the problem that I am convinced I have SCLC.
It started 6 weeks ago with pain in my fingers and not I have pain in my toes too.
I also had a bit of wheezing when lying and a bit of breathing problems.
I went to an pulmonologist and he made an x-ray and lungfunction test and both were ok.
2 weeks later I still had the finger pain, wheezing and breathing problems and pain in my right chest. the same pulmonologist send me to a CT (without contrast because I am allergic to it) and one week later I had the results of the nativ CT that it was fine (according to the pulmonologist and the radiologist).
Since then my symptoms get worse daily.
Now I have more wheezing and I also have sometimes heart racing (my heart is checked and fine), and I also have headaches and nausea.
I read that SCLC makes a lot of paraneoplastic symptoms like nausea and so on.
I also have read that nativ CT is not that great to find tumors. So I am worrying that in my nativ CT the SCLC was overlooked and simply not seen.
You had a CT with contrast so I guess this should be enough to know if you have lung cancer.
Your pain in the fingers could come from your neck problems.
I do not have neck problems so I think my pain in the fingers are from the SCLC.
I am completely lost and regret that I did my CT without contrast (even being allergic to it because of thyroid).
What makes me worrying is that I read many LC stories and many people had mild wheezing when lying and breathing problems.
That's why I am very convinced I have developed now LC (especially SCLC the worst LC).Btw since you have zero breathing problems and a good lung function test I do not think that you have LC
Hi
, if I understand you correctly, you had two opinions from two different hospitals already? If not, I would definitely get a second opinion from a separate/different comprehensive cancer center. Did your doctor to tell you to come back for another Low Dose CT Scan (in perhaps 3 months) to contiue monitoring your lungs for changes? Unfortunately, we often have to advocate for ourselves, I would stay on top of it. Wishing you all the best, Alisa, Lung Cancer Team Patient Leader
