A very warm welcome to the Cancer Chat community HHTT although I'm really sorry to hear your mum has been told she has lung cancer, and for how this news was given. 

Unfortunately I'm unable to answer your questions about the rheumatologist but our team of cancer nurses may be able to help, so if you'd like to get their thoughts on this, you can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Hopefully some of our members will be along soon to share their experiences and advice but in the meantime, we're thinking of you and hope you're able to get some clarification on this when your mum sees her oncologist.

Kind regards,

Steph, Cancer Chat Moderator 

Thank you x

Hi all, 

I know that not many have replied to this thread - which is fine. I understand it's difficult to reply to these things sometimes if the situation doesn't relate to your own experience or sometimes you just don't know what to say. I've read a lot of the posts on here, and some are difficult to reply to. You don't know the right thing to say in these situations but one thing is for certain -  it's all just so scary and confusing. 

I do want to keep updating this though, mainly because I've read a few posts on here where I've wanted to know more, but the original poster disappears. Again, that totally makes sense as you do just move onto dealing with things, whether its yourself who has cancer or experiencing a partner/family member being diagnosed. All of it's horrible and scary. But I did find it comforting reading about other people and if you have come across my post, I hope this is in some way comforting that you are not alone. 

My mum had her follow up appointment with a heart and lung consultant. Originally we thought it was with an oncologist, but she is yet to meet one. They also confirmed that it was a malignant, large tumour in her lung from her CT scan. In my original post, I expressed a lot of confusion and anger with my mum being diagnosed over the phone by a rheumatologist. I still do not think this was appropriate and the hospital did send a letter of apology to my mum - but none of that matters now really. 

After that awful phone call, I did go into denial. I was always under the impression that doctors do not ever diagnose cancer from a scan but only after a biopsy. I thought there just had to be a mistake. Despite being told to stay off Google, I couldn't help it. I googled absolutely everything about lung cancer and CT scans. I stared at google images of malignant and benign lung masses on CT scans trying to decipher whether doctor's can make that call and say it's 100 percent cancer. None of that was helpful, there was so much conflicting information. Some sites said you can never diagnose cancer from just a scan and others say doctors can.  I did end up driving myself mad with it so I wouldn't recommend doing the same. But if you're like me, you'll do it anyway.

Once the second consultant confirmed my mum's diagnosis my whole world fell apart. I could no longer exist within the world of denial and hope that it was all a mistake. We had to face the reality of it. My mum has lung cancer. 

That week, I don't even really remember that well. The day of her appointment was just filled with anxiety and fear. It sounds so stupid now but I even contemplated buying a small bottle of champagne to pop if they told her they had made a mistake - I am glad I didn't do that!

But we do know the next steps . My mum has to have follow up tests. She has already had a lung function test and is yet to do her PET scan. As you can probably empathise, the news hit my mum really hard and she did not feel well at all that week so decided to postpone the PET scan until next week. She is thankfully feeling much better now - I do believe stress and processing everything made her so run down. 

You're  never really prepared for the reaction of the person who is diagnose. My mum, probably to protect our feelings and herself, did shut us out for a week. We were all desperately trying to understand everything and she did not want to respond. That was so hard and I ashamed to say I briefly felt anger towards her. But I of course understood why she did that and we were all just hurting so much. 

From my understanding (from Google), it is the PET scan that will show live cancer cells, whether it has spread and therefore they can determine the stage. If she decides to do the biopsy (I am not sure if she will) they can see the biology of the tumour and then recommend the best course of treatment. She has already said she will not do chemotherapy. 

After everything I have researched, it is hard to stay positive. I no longer Google anything, as I have probably read it all anyway, but the fact that the tumour is large does suggest to me that it has spread. I am trying not to think like that, but I am sure you can agree, it's really, really hard not to. 

All we can do now is wait. I will continue to update as and when I am ready to. 

Thanks for reading.

T

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HI ProBaw. Thank you for the reply! I agree, it was the wrong way to deliver the news - and we did get a letter of apology from the hospital. 

I have also learnt a lot more about the MDT etc. It was something I did not want to learn, but here we are. 

Thank you for sharing your experience about your wife's diagnosis. I hope she is doing OK. 

T

x

Yes, it is difficult to know what to say sometimes. However, please do keep typing and writing to us anonymous people. We do listen. It helps to write down things, I have found.

I was shocked at that telephone call!!!

Thinking of all of you.

Thanks Mary, really appreciate the kind words. It does help to write things down. Even to read others' experiences - it has given me so much comfort. 

T

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