Hi everyone
A quick recap…
I’m newish to this group and I have recently been diagnosed with Lung Cancer. I also have a shadow on my spine and I was waiting for more tests to determine if that is also cancer.
I don’t yet know which type of lung cancer it is. I only know I have a 4.5cm tumour on my right lung and two smaller ones on my left lung. I’ve had a chest X-ray followed by a CT scan which picked up the tumours and I’m now waiting for appointments to come through with the respiratory team to find out more details. My GP has fast tracked the request so I’m hoping it won’t be too long but I’m on pins at the moment waiting.
When I was first told I was devastated as is my husband, having had a few days to process, tell the kids and our family and friends I’m feeling stronger and so loved and supported. I’m in limbo now with the not knowing what’s next and I find that scary.
Update……
I had my respiratory team appointment yesterday with a thoracic consultant (Dr Crawford), he was lovely and I also had an MRI scan on my spine yesterday but Dr Crawford told me that was just to get more detail as he already can already tell that the spine lesions are definitely cancer 
I have Rheumatoid Arthritis so I was hoping that what they could see was that but sadly not.
He basically told us that everything we already thought was correct. I have metastatic lung cancer, so both lungs, my spine and I also have lymphangitis carcinomatosis (inflammation of the lymph vessels caused by the malignancy) which isn’t helpful at all. He hasn’t given me a stage but I guess that’s for the Oncologist to decide but I’m guessing stage 4 as he said my cancer is incurable and inoperable but he says a treatment plan will be found with the hope of reducing the tumours, hopefully getting rid of the lymphangitis therefore buying me some time. I said I don’t want to know how long I have because whatever they say I’m going to do my best to prove them wrong. He says my general health is good but because I have RA it’s unlikely immunotherapy would be any good for me. Talk about curve balls!
I had a massive meltdown last night, hysterical crying, the whole feeling sorry for myself doing the ‘why me’ ‘why did I not know I had this thing’etc. My husband is struggling too, it’s all happened so fast and in a matter of weeks our whole future is in jeopardy. Sorry to be moaning when I know you all are going through the same but I need some positivity and my hand holding today by you wonderful people who really know how I feel.
Hi Joolsg I am so sorry to you find yourself in this position. My heart went out to you reading your post.
Being in between the respiratory team and the oncology team is a very frustrating time. The respiratory team are experts indeed on the workings of the lungs, but they are in no way cancer experts, and that is why time and time again I see people who were given incorrect information from the respiratory team, or not the correct treatment expectations from that team. For instance, I myself was told by my respiratory consultant that I had 6 months to live. I even told my children this! My youngest was only 13 at the time! That was 10 years ago!
There are so many new lung cancer treatments now, and the respiratory team will not be up to date with all of these. I am sure mr Crawford thought he was doing the right thing by giving you all this information, but it makes me cross that they can read your report to you without the expertise to back it up.
I know it is hard, but please try and wait until you see the oncologist. I know all you seem to do is wait, wait for scans, wait for tests, wait for results, but your oncologist is the only person who will be able to tell you what your treatment is.
In the meantime if you need to talk to someone please do call the macmillan support line on 0808 808 00 00 they are available 7 days a week from 8am until 8pm. They can also arrange a free 6 week counselling session for you to help you through these early stages of being diagnosed.
Please let us know how you get on with the oncology appointment.
