Does anyone have any experience of paraneoplastic syndromes, or on how to raise concerns you stumble across with medical experts?

As a bit of background, My dad was diagnosed with stage 2 nsclc on 20 June and is due to go for a lobectomy on 24 July. The surgeon has explained he has to take a look with a camera first before committing to the full surgery as he needs to know if the fluid showing on his lung contains cancer cells ( in which case it becomes stage 4 and inoperable ). My question is about the possibility of a linked condition. My dad hasn't really presented any lung cancer symptoms and has always been a non smoker. About 5 months ago he started to experience hand tremors and dizziness along with mood changes ( which he thought was depression). His gp put him on anti depressants but the diizziness got worse so they were changed and then ceased as the dizziness remained. We began to suspect the onset of Parkinson's as the tremors in both hands have got gradually worse and he is constantly bothered by the dizziness. The gp ordered a routine chest x ray as he had never had one, and this is how the lung cancer was found. My dad had a distressing episode this afternoon, where he went very faint, dizzy and disoriented and after a trip to a&e which revealed no problems with his heart, stroke etc, I have begun to look into what could be causing these seemingly non cancer related symptoms. He is finding the constant dizziness very distressing, but the gp is focussing on the lung cancer and treating all this as unrelated. I know I shouldn't google, but I have stumbled across this paraneoplastic syndrome, which does seem to give a possible explanation for his symptoms. Everything I have read says early diagnoss is paramount to successful treatment or management, but my brother and I are a bit lost on what you do with potential information, do we ask the Macmillan support nurse, the gp ? does anyone know anything about this or have any advice on how to raise possible conditions with the medical team? Part of me feels like I am interfering with edical experts but a big part of me is desperate to do something to help him as he is so distressed by both the cancer diagnosis and these other symptoms. Thanks to anyone who reads this x

5 Replies

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  • Hi there.

    I'm sorry, but I don't know anything about these symptoms but I think as with most illnesses, early diagnosis and treatment getting started, is most important. No reason why you shouldn't speak with the Macmillan people, as they may well be able to offer good advice.

    It's your dad you're talking about, so you're entitled to explore every avenue without standing on anyone's toes. (My personal opinion!)

    Best wishes for a speedy answer to your concerns! Bill

  • Thank you Bill for taking time to reply, this site has really helped me get myself in check in the last few weeks so I can be strog for my Dad, seeing all the hope there is from people like you.. We will speak to the MacMillan nurse as the first port of call then. I don't want to have regrets in a few months if I don't mention it. Thanks again.

  • Hi, im not a doctor, but i would say, hope he has the operation but an operation can be risky too.. it all depends on the stage of the cancer and if it already traveled somewhere else. The cancer in the lungs causes the immune system to try to kill it and sometimes makes the blood thicken and it shots up to the brain area... the thick blood or the remains of the cancer cells break off and travel or go else where and cause problems.

    I hope they can operate...

    I don't want you to be sad,,,, but trust me i know, take photos with him and videos and spend time with him.. if they can cut it out its best....

    he can run the risk of stroke but it will present as a stroke but it's not cause its the paraneoplastic syndrome causing the blood to block - it's not the narrowing of the artery walls...

    it sounds like a linked condition.. cancer in the lungs causing neurological symptoms.. cause that's what paraneoplastic does.

    Sounds like the gp is saying that everything is unrelated to get them off the hook for not doing something sooner and being more thorough - lung cancer and all this is related.

    Take care.

    PET scans help identify if there is a remote problem of cancer elsewhere.

    Bless.

  • Thanks jason for your reply. All being well the surgery is set for 24 July so just have to keep everything crossed that the fluid on his lung is clear ad the operation will go ahead. He has had both a ct scan and a pet scan (full body including brain) that were both clear. Since I posted we called our Macmillan nurses and tey weren't dismissive at all of my concerns. They said his blood tests weren't showing any indicators of paraneoplastic syndromes ( but I'm not ure if that is because they don't routinely look for them?) but offered that surgery will go a long way to resolve the issue. I've read loads to the contrary but at the minute I'm discarding that as we have a lot to get through in the next week with the surgery itself. They were concerned about his mental state and his anxiety and recommended he speak to the gp for some sedatives. Within an hour of taking one diazepam the shaking had stopped, so who knows. All we can do is wait to see what happens next week and then assess next steps from there. Thanks again for your reply, I really appreciate it.

  • Blood tests show what that are looking for.

    If he is on blood thinners now... sometimes they won't operate because the blood is too thin and it's dangerous to operate when the blood is very thin

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