Hi all. I haven't been here for quite a long time but have been going through a really bad time. I had NSCLC Adenocarcinoma 5½ year's ago and had a Lobectomy. Approx. 2½ years ago I fractured my vertebrae and am now waiting for an ' urgent ' MRI to check for cancer in my spine. My question though is, does anybody who has had an upper right Lobectomy have a problem with their breathing or speech? I think my speech problem is connected to the pain from the fracture's because it gets worse the worse the pain gets. I have been so grateful to my Thoracic Consultant for finding the tumour but had been left for 15 months with the tumour on an Xray but the Pain Clinic forgot to tell anybody. My Consultant refound it (!) when I got pneumonia! I have been feeling really exhausted again and must admit to being a bit concerned but will be glad when I have the MRI. I didn't have any Chemo etc. after the Lobectomy and just wondered whether anybody else has had any problems a few years after Lobectomy ? I think when cancer is mentioned again then the niggle is there. Thank you for ' listening '. All the very best to everybody.
Quick question please! : Hi all. I haven... - Lung Cancer Support
Quick question please!
Sending hope that the MRI happens soon. A couple different people that I know who had lobectomies say their voices have changes. One friend claims it's because of her lost lung capacity. It makes sense to me but you'd have to ask your pulmonologist or oncologist about that.
What stage was your cancer when you had the surgery? Were you offered chemo?
Thank you for replying Dengie. It's been a long time since I asked for your advice! Do you know, I was never told what stage my cancer was though I recall my G.P. saying that it was Stage 2 but I had been left for 15 months with the tumour on my lung before the Thoracic Consultant saw it on an Xray I had when I was admitted to hospital with Pneumonia. He came round and asked why I hadn't had anything done about the tumour 15 months previously and I was shocked and said that I didn't know that I had one 😳! After that thing's moved quickly with scans , biopsies etc. and then the upper right Lobectomy. I am lucky that it was slowish growing! No offer of Chemo and now that I have vertebral fracture's and 1 scan said that there was cancer seen , I am a bit concerned. I don't have an Oncologist. I had to go to a hospital 4½ hours away to have the Lobectomy. I think a bit of the niggle is because my health has deteriorated badly. The Xray which stated cancer at the fracture sight was 2 years ago but that Xray had been sent to Australia because our hospital didn't have enough Radiographer's. It was the Australian Radiographer's who first saw my lung tumour and our Pain Clinic who ignored it! Anyway, long story but since I felt the big , bony lump on my spine I have been feeling so ill and have to confess that a couple of symptoms I have now, I had with the lung cancer except now my leg's are really bad...cold, numb but so sore and I have RLS.
Sorry Denzie. My reply is long winded and I didn't mean to blurb all of that! I don't have anybody here to talk to who understands about cancer. That 15 months I went through undiagnosed my health got worse and worse and 1 Dr. told my husband that it was all in my head !
Hope you are alright. Take care and thanks again.
best wishes, Danni. I was diagnosed late stage lung cancer in 2015 and did not qualify for lobectomy but wanted to offer encouragement. I had metastasis to my spine, adrenal gland, liver, and brain and here I am 9 years later. Best wishes
That is amazing! Thank you so much for sharing that with me and how brave you are. Your body and spirit has been fighting so hard and it shows what a strong spirit you have. Do you have a lot of pain or do they have that under control? I hope so. Please take care and thank you again. x
Thank you, yes the pain is under control without any pain medications now for many years. I have some residual nerve pain in my ribcage/chest area from chest tubes, but otherwise no problem!
Thank goodness. I'm so pleased for you although nerve pain is not great but I'm so glad that you are in a good place. Take care and look after yourself. All the very best. x
Amazing...can I ask if you were EGFR and what treatment you are currently on?
wow that is amazing! Can I ask what treatment you have been on? Were you EGFR+? You give hope for all of us!
no, not EGFR, now actionable mutations. I had standard of care for that time:carboplatin plus pemetrexed for 8 rounds. Then pemetrexed for what seems like forever. I think it was around 70 but happy to say I’ve forgotten the exact number (chemo Brian is not a myth, plus time passes and I have a big life). Routine CT scan found progression-very small lesions is lungs that we treated with SBRT (targeted radiation). New boarder testing showed I was a Candidate for Yervoy plus opdivo. Followed by opdivo for a couple years before being brave enough to stop all immunotherapy. I had brain lesions, craniotomy, more brain lesions treated with SRS radiation in the mix during those years also. I have an awesome medical team and got second opinions that concurred with the original recommendation. Best wishes to everyone. There is hope
What are your thoughts?
Pet Scan results are back
Portacath...any information please?
Scared of surgery
Lobectomy
