Lung cancer or TB??

Hello I decided to join this forum as my family have just found out that my dad (61) who has been feeling unwell for 6 weeks may possibly have Lung cancer. It's not been confirmed yet. I will give a brief timeline of events so far:

6 weeks ago: had a busy multicountry business trip. Came back and started feeling run down. Loss of appetite and fever almost every night. Also frequent urination at night. GP gave him amyltriptyline for the frequent peeing. It has helped slightly. No recovery from the fevers and loss of appetite. Has lost a lot of weight. GP sent him for an x ray and said that they can see something in his lungs. He gets a referral to the 2 week wait cancer clinic. 
Consultant at cancer clinic doesn't understand what Dad is doing there. Says that he most likely has TB. They do a biopsy and results are inconclusive. A CT biopsy is done. So far we haven't received the complete results of that but have been told that he has a cyst that has malignant cells. He had swollen nodules in his lungs and now today has gone into theatre for a mediastinoscopy to see if the swollen nodules are due to TB or if the cancer has spread. The mediastinoscopy will be the last test that he will have. After this we can get a solid picture of what is actually wrong. What kind of cancer, has it spread and if he has any TB. Hopefully results will be given in 7-10 days. So far everything has been on NHS apart from the mediastinoscopy today that he is doing in a private hospital due to him not wanting to wait 3-4 weeks in NHS. 

 

This has come as a huge shock to all of us. Dad is in great general health and this has really come as a bolt from the blue. 
 

So I've joined this forum in the hope that I can glean some information from people who have been in our shoes. I just don't want to spend hours on google confusing myself and reading incorrect bombastic cancer treatment headlines! 
 

thank you for reading x

  • Ime surprised they havant htarted your dad on antibiotics if they suspect tb .it took two trips to a/e for me as had sepsis they didnt actualy rush like there supposed to i read a bit about tb and it can mask itself the body can grow tissue round it to protect itself like a cyst ime sorry thats as much as i know tb it seems they have gone from the sublime to the ridiculous with antibiotics ive wonderd how many people have been denied antibiotics have got realy ill because of it i can imagine quite a lot all these are my opinions ime not a doctor but i had a drug for crohns and they do lots of tests for tb as it stops your immune system working and any latent tb can go wild in my case i ended up with so called asthma because they didnt know how to treat the side effects so now i read on everything .paul

  • Hi 

     

    I am going through similar thing with my mum. What was the outcome of your dads case if you don't mind me asking. 
     

    thank you

  • Hello Charlotte,

    So after mediastinoscopy Dad had ultimately been diagnosed with Stage 4 ALK+ non small cell lung cancer. It's in both lungs, a lot of lymph nodes; 4/5 small mets in brain and also small mets in adrenal gland. We decided to go with a hospital in London after his initial diagnosis and his care has been excellent (all private). He was put on tablets called Alectinib in November. His latest PET scan and Brain MRI were positive. Primary tumour has shrunk. There are no cancer cells in his brain and cancer activity in general has decreased. 
     

    I hope this helps you. Good luck to you and your mum x

  • Hi

    this is helpful thanks - similar scenario with my mum now. Suspected stage 4 lung ( metastatic) and initial biopsy from a lymph node yielded inconclusive results and may have to undergo keyhole surgery to take another sample from the main tumor.  Doc says 10% chance it might be TB.

    May I know how is your dad doing now? Any side effects from Alectinib?

    thanks

    Seb

  • Hi Seb and welcome to the forum.

    I just wanted to get in touch as I noticed you were hoping to get an update on BusyBee03's dad.

    This member hasn't been on the forum in a couple of years now so there's a chance you may not hear back from them. I really hope that won't be the case but if you don't receive a reply, you could try reaching out to others on more recent discussions about this topic or starting your own.

    You're also welcome to get in touch with our cancer nurses. They're very knowledgeable and will do all they can to answer any questions you have about your mum's situation.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Dear Seb apologies for not seeing this sooner. I got some messages re this forum changing and came across your message. I hope your mum is doing well. I'll give Dad's update in a nutshell. Dad started Alectinib with amazing results. All his mets in brain and lymph nodes resolved. But within 3 months he got the very rare side effect of Pneumonitis - it him into ICU with ventilator as a precaution and told us that it was 50/50 whether he would make it. 
     Happy to say that he did make it but Doctor changed his med from Alectinib to Loratinib which he's been on since Feb 2020. So far so good. No new tumours, and he's well within himself. 
     

    side effects he suffers:

    His skin is very thin he's become dark in colour. Uses SPF 50 always. 
    Big appetite! Dad has always been a small eater so this change is big for him. He has a gut where before he didn't and taking steps to control his eating. 
    He's cut his alcohol intake a little as he says his capacity has decreased! 
     

    All in all, we are very happy where he is today. I just hope against hope that Loratinib keeps on working for him and yielding the positive results. 
     

    Again Seb, I am sorry I didn't reply before. I hope your mum is doing well and is happy. Any other questions please don't hestorste to ask. I have changed my settings so will be informed! 
     

    take care x
     

  • Hi BusyBee03,

    many thanks for following up on this and am glad that your dad is doing well :happy: 

    My mum (68) is diagnosed with stage 4 non small cell with 3 mutations ( EGFR, CTNNB1, PTEN), which has spread mainly within both lungs.

    She is now on Targrisso targetted therapy for the EGFR mutation, which has shrunk the tumor growth. Minimal side effects ( dry skin and tiredness) thus far.

    Wishing all the best to you and your family,

    Seb