Protocol; genetic testing

[lucanus15]

Hello it's me again! I hope so many questions is not bothering anyone. I have an active mind, especially since having seen so many things overlooked in the past two years. I'm just wondering if anybody knows at what point a blood test is given for hypercalcemia in advanced lung cancer spread to bones. Would it be only after the results of a bronchoscopy, once there is a definite confirmation of cancer do you think?

My Mum told me that my Dad had two blood tests in hospital but she didn't know what they were, so I don't know whether my Dad has been tested for hypercalcemia or not and I don't know how I can find out. I'm back in France now and it's a bit frustrating not being able to do anything.

I was able to accompany him for his bronchoscopy which went well. They went down his throat and not his nose, which I wasn't expecting. I imagine it to be easier to tolerate. It's odd though, as the nurse told us half an hour before, that they would be going down the nose (which I thought was standard) becasue it is less irritating. I asked the nurse if the biopsy analysis included genetic testing and she replied that they do not do that in that hospital. How do I hear so many things about targeted therapy online yet it seem so elusive when I talk to professionals about it? Is care not just standard? Am I getting something wrong or is it really just the luck of the draw? I can't halp wondering if the nurse wasn't sure what she was talking about. She wasn't very friendly.

Thanks in advance to anyone reading and anyone who was able to follow and anyone who has experience in this matter! All the best! xx

[Bow-19]

If your Dad gives his permission could you write to his Consultant to ask for the information that you want? Could it be that they are only at the investigation stage and when they have more information, they will then be able to make a diagnosis and if needed a treatment plan? I can understand your anxiety, I think the waiting and not knowing makes it worse. You could also speak to the nurse on the helpline at Roy Castle who might be able to help with your questions.

[JanetteR57]

I've had 6 bronchoscopies over the years and never had one down the nose so unsure where this has come from. I had a tube sent up the nose with an ENT consultant to check for nasal drip/reflux in case this was causing another issue. You can usually only find out what tests a relative has had if the patient gives consent for this information to be passed onto specific people (either a power of attorney or similar). Where is your hospital? There are a large amount of investigative tests done for lung cancer - to determine all manner of things and these take time. If the imaging does not show any spread of the cancer beyond the lung, then it is dealt with in one way. If it has started to spread anywhere (whether through lymph, blood to bone, liver, brain or elsewhere) then other tests and treatments are done and some treatments such as surgery are ruled out or become secondary to systemic rather than localised anti cancer treatment. I understand your need to know but pathology centres and hospitals have to follow standard of care and whatever lung cancer pathway is protocol in your country or health system. Many things can suggest cancer but a definitive diagnosis may not be actually given until certain things have been ruled in or eliminated. In my case I did not get a diagnosis until 9 years ago today despite having had half my left lung removed on 16th Dec 2010 after turning up in A&E mid Oct 2010 and a lesion/large mass being found on chest x-ray. I did not have a biopsy before surgery as the mass was large and had to come out anyway and then the tests were done during and post surgery to ascertain what is was. it turned out to be a rare cancer hence waiting almost a month post surgery to find out. some centres take biopsies by EBUS, some by bronchoscopy, some by needle and others rely on blood tests/imaging and other examinations. When you ask if care is standard, the response is yes and no. Lung cancer treatment is a very targeted business so although there are standards of care - it depends on many different factors as different treatment regimes, agents and combinations/orders of treatment are used dependent on the results of such factors. it certainly isn't luck of the draw - one size doesn't fit anyone which is why results used to be so poor and targeting treatments requires precision diagnostics. there is a lot more information about the different types of lung cancer, tests, treatments and some answers to your questions on Roy Castle lung cancer foundation website. Trying to pre-empt what tests are needed by a lay person is fraught with risk as it is a highly specialised area and many oncologists/surgeons/physicians struggle to keep up with the various developments so the internet has no chance of being up to date. I understand your frustration of being in another country and again, the internet can confuse as some treatments have different names in different health systems and countries. I do hope you get some answers soon and hope your dad is going on ok. When my dad was in hospital for a third bowel cancer in 2016 and me now being very involved in cancer research/conferences, I had loads of questions I wanted to ask and asked him to ask but his response was 'I'm not interested, luv, I just want to get home to your mum'. He's her carer (she has Alzheimers) and this was such a lesson to me - he'd had two previous bowel cancers and we hadn't thought he'd get to 60 (he will be 90 next month) so after yet another one found and another major surgery to remove it, incredibly weak, I had to respect his wishes and deal with my own anxieties and concerns about him and them both in another way. Knowing a little or even a lot can increase our concerns which may be one reason that they say those involved in medicine and healthcare can make lousy patients. good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear lucanus15

Your frustration is understandable in not having all the information. and being in another country. It would be great if you had permission from your Dad to speak to the Consultant, or if you had power of attorney in place.

There has been an excellent response from both Bow-19 and JanetteR57 and there is not much to add. However do feel free to call us if you wish to discuss anything further on our nurse led helpline number on 0800 358 7200 or you can email us at [e-mail]

Kind regards

The Roy Castle Support Team

[lucanus15]

Thanks so much for your help everyone, thanks for taking the time. I always read the replies but can never find the right words to reply. Life is so hectic on my own with my two small boys.

My Dad was called in yesterday to discuss the findings of the bronchoscopy. They aren't able to propose a treatment due to him being so tired and weak. They have given him a few weeks to live, he might make it to his birthday. I'm going back over to see him tomorrow.

Just an aside about the bronchoscopy, the two I had myself were through the nose and not down the throat, hence my assumptions.

Best regards xx

[JanetteR57]

Sorry to read - that sounds sad for them to jump to that conclusion - does he have other conditions? being tired is usually part of the condition but 'weak' could cover a lot of things. In any event they should offer supportive care right until the end (unless he refuses it) so maybe worth a second opinion? Thinking of you at this really difficult time and understand hectic family life - take care of you.

Thanks - that's interesting about the nose - having looked it up, I see they can go either through nose or mouth. I've had all mine done with some local spray but one under General anaesthetic (rigid bronchoscopy) - I've recently been diagnosed with vocal cord dysfunction and told it's likely to be in some part due to bronchoscopies that may have damaged the vocal cords so perhaps nose access is less risky? learning all the time....

[lucanus15]

I know this post is getting old but just to conclude. My beloved father died humourously, surrounded by love, all his family and his favourite music on the second of February one month after the shadow was found on Christmas Eve.

I don't think it's really sinking in.

Thanks for all the time people put in to such helpful replies. All the best, stay well xx