1sr Appointment with Oncologist - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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1sr Appointment with Oncologist

Good evening everyone.

Good news - the cancer has not spread beyond my lungs! He thinks Immunotherapy is the best option for me (due to the pneumonia I had in October and complications from an illness I had several years ago). There is a possibility of there forever being an infection lurking, albeit it at a low level but chemo could cause a flare up. However to have the Immunotherapy, the cancer cells need to have a 55% covering of a particular protein - don't remember it's full title but it had a P and a 1 in it. My cells only have 35% of this protein so he has to write to the health board as I'm not eligible under current NICE guidelines. He is quietly optimistic but there is a 3 week turnaround, however he said there were no changes between my scans in June and July so it shouldn't be an issue. If it's a no to Immunotherapy I'll need Chemo and Immunotherapy, but at least thete's a plan B.

In my left lung, where they diagnosed secondaries, he said the "spots" were very unusual in that they had holes in the middle like a polo mint. He said they weren't unheardcof but very rare. They can't be sure what this is but having taken all sorts of samples and not being able to grow any bugs, it probably is cancer. However if it was some kind of bug, again the chemo, if I were to have it, could cause it to rear it's head.

In the meantime he has prescribed Oramorf for the cough and pain which I'll pick up tomorrow.

I did ask about how much time he thought I might have. He said he could give me stats but individual cases depended on response to treatment. I declined to know the stats, mostly as some of you on this forum haven't found it helpful and they're outdated. And indeed many of you on here are proof of that!

My husband missed the appointment due to a mis-communication between us and is very angry tonight. His focus is on how they didn't pick up on the cancer sooner seeing as I had regular checks for the pneumonia. For me, looking backwards is pointless- it's what's happening now and going forward that matters and there's no point wasting energy on a situation that can't be changed, or trying to blame someone. But I couldn't answer all his questions and I guess he feels I'm not involving him so I need to be more aware that this is his journey too and not to try and protect him too much.

I told my boss today - he received a Parkinson's diagnoses last week so I felt easier about telling him, not wanting to rain on his parade but we're both in the position of having life changing/life limiting diseases even though they are very different. The main reason I wanted to tell him is that I am in and out of the office randomly at the moment and I didn't want him thinking I was just doing as I pleased with the kids being off. He was so kind and supportive and just told me to manage the situation as I wanted to and not to worry about being in the office.

So, that's been my day. I was awake most of last night worrying and had the busiest of days running around but I feel ok.

11 Replies
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That's really really good news!! Whilst mine has spread I am in immunotherapy only and it is working. I hope your consultant gets the news you want! Positive thoughts and 🤞🤞🤞💪💪🥰

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Thanks Elt79, fingers crossed. Glad þo hear it's doing the job for you - ling may it continue. X

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That's great news Aamar. I am so pleased that you now have a plan with the Oncologist. I know it's worrying waiting for the decision re the treatment but you are on your way now! Good luck👍

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Hi Swimdown

Yes, feel more at ease now that there's a rough plan with rough timescales. It helps to plan the holidays - days out etc and work too. Hope you are ok? Will keep u posted. X

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I'm doing well thanks and back to regular swimming which helps both physically and mentally. Unfortunately my husband has recently been diagnosed with Bowel Cancer and is having surgery. Fortunately it was discovered early from the Bowel screening test. Good luck with your treatment.

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OMG, double whammy for you - I'm really sorry to hear that but like you said, caught early, so a good prognosis - I guess you'll just have to support each other and hopefully not have the same bad days but share many of the good days. Take care and well done on the swimming.

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Thanks Aamar, thankfully he doesn't need further treatment. Just proves how good the bowel screening programme is detecting it early. We need similar screening for lung cancer! Good luck with your treatment let us know,how it goes X

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Dear Aamar,

What absolutely marvelous news! It made me very happy. I've explained it to my cat (v. large ginger male) who is on the bed with me and he is happy too. I realise that it is not completely straightforward, but so much better than it might have been. Even so , I think there are great benefits in involving you husband fully - sounds as if there is a bit of work to be done ... . My wife is my rock in practical as well as psychological ways; for example, my immuno (atezolizumab / tecentriq) leaves me so tired that I can hardly so anything for myself.

Good news also about you boss (his reaction, I mean, not the Parkinson's). I have been surprised at how often I now see a very good and sometimes unsuspected side of friends and colleagues.

Get your consultant to check: perhaps they are in fact polos.

Very best wishes

Stephen

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Hi Stephen, your pist made me laugh! It would be great if they were polos and not secondarys! Maybe the cat has an opinion?!

Yes, some work to be done with hubby - we have both been so busy for so long I think we've forgotten how to communicate - he looks after his responsibilities and I mine with very little crossover. He's working flat out - this is his busiest time of the year (self-employed builder/garden maintenance) and he may need to have an operation on his thumb later on in the year meaning a month or two off work so he's understandably trying to earn as much as he can now. He may need to take time off with me too although I don't think he's thinking along those lines yet. I guess we'll mudfle through somehow.

The oncologist said most people don't have side effects from the immuno but you mentioned tiredness. I suppose it could be worse but when do you feel the worst and how long does it last? How often do you have the therapy? How long does it take to administer (he said half an hour). Sorry for all the questions - just learning! X

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Dear Aamar

That is great news and what a journey you have been on already! It is good there are some treatment options available to you and hope you respond well to the immunotherapy. Just getting some clear answers and a plan for treatment can make such a difference.

It is good to hear that your Boss is understanding , will be supportive and allowing flexibility with your work and hours.

Let us know how it all goes for you.

All the best

The Roy Castle Support Team

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Thank you support team- my learning curve is quickly growing! Yes, knowing there are options is good - a plan b if all else fails. Will of course keep you posted - my new family. X

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