My mum was diagnosed with mouth cancer at the end of June 2022. An MRI and a CT scan later we found out she also had Lung Cancer which they believe has spread to the bone. She's having pins put into her thigh bone at the end of the month to strengthen it as the cancer has weakened it to the point they're worried it could break or fracture.
A biopsy of the jawbone came back with no results so they sent her for an EBUS which again came back with no results. Is this normal?
In this time her health has declined, she's losing weight, sleeping a lot (dozing rather than good quality sleep) and more recently seems to have lost motivation to do almost anything. She just spends most of her time in bed, no TV on or anything.
The Oncologist has advised because the biopsies have not been helpful, it's critical to start chemo before her health gets any worse. Her pre-assessment was today and her first lot of treatment is Friday. I'm happy that we're progressing but I can't help feeling scared and worried for her.
I'm worried about her mental health and I'm worried about the after effects of chemo.
Sorry this is so long but I don't have anyone to speak to who understands. Anyone who can offer some advice or share a similar experience would be greatly appreciated in making me feel less alone in navigating this new normal.
Thank you for reading.
Written by
Reeeb
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Welcome to the forum and so sorry to hear about your Mum. This is understandably an anxious and distressing time for you all. I have placed some links below on both information and support which may be of use.
It may be that the oncologist has enough information to commence the chemotherapy, everyone responds and reacts differently to their treatment and the chemotherapy team will monitor your mum closely.
We have a range of support services, from one to one support to online support groups through zoom , if you or your Mum are interested in any of these you can register through this link: roycastle.org/help-and-supp...
If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:
Please do not hesitate to contact ask the nurse, if you would like to discuss anything either by email at lungcancerhelp@roycastle.org or our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
You may already know of the Mouth Cancer Foundation, but if not here is their website and contact details for the helpline: mouthcancerfoundation.org/ and 01924 950 950
I'm sorry to hear about your Mum, and I hope you are managing to hold it all together as you support her.
My husband also had an EBUS procedure that found no cancer cells. The team were very surprised because the consultant had been able to get 6 good samples from the node. For whatever reason, the lymph node sampled was enlarged but appeared not to contain any cancer cells.
He then had a CT-guided biopsy of one of the lung tumours. This did successfully get some cancer cells to confirm the diagnosis. If it hadn't, we were told that he would have a surgical biopsy. I understand this is a much more invasive operation under a general anaesthetic and I suspect would only be an option for people in quite robust health.
My husband also had something called a 'liquid biopsy'. Its a way of looking at DNA bits from the cancer that is circulating in the blood and just needs a blood sample to be done. I don't know how widely these are used on the NHS yet (I know the Royal Marsden is doing a trial) but may be worth asking.
Please let us know how you get on and best wishes to your Mum for Friday.
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