Advice, needed

[Sheddy00]

Hello, my husband was told 4 weeks ago he had lung cancer. He had a ct scan and a biopsy was taken. We are still waiting for all the results from the biopsy. What we do know is that he has an 8cm mass in his left lung, a mass between his lungs and a lump in his lymphnodes in his neck. We were told they can not cure or stop it, but treatment may be available to slow it down..

So far he is coughing a lot, and lots of phlegm is coming up, he can not lie down flat either. he cant walk 20 yards without it being like he has run a marathon,and he can no longer get upstairs. He has no appetite because he constantly feels sick, and is hardly eating anything. But he can drink a milkshake. Doctors has given him codine. But his main problem is pain in his legs. He says it's like very bad toothache, and constant.

So is this normal.. the leg pain? And has any one else experienced this. I did ask the Macmillan nurse about it but she just told me to phone the gp.

[JanetteR57]

It's such a whirlwind when diagnosed and all symptoms can be very distressing. That doesn't sound very good from his Macmillan nurse - GPs are not experts in lung cancer, either treatments or side effects - I'd be more tempted to call the secretary of the consultant he's seeing and ask for a conversation with the consultant. I've not heard of leg pains being a side effect - (usually skin, gastric problems) and breathlessness and feeling sick common both from the condition and the treatment. I had surgery in Dec 2010 and half my left lung removed and diagnosed in jan 2011. I was back at work a few months later and raised money for Roy Castle. I met a nurse who'd been diagnosed with stage iv and told she had less than 6 months to live with stage iv but with targeted agents available on clinical trials at the time, she lived for almost 5 years. Since then there has been an explosion in targeted therapies (which is why they do the biopsies to find out the exact characteristics of the tumour) - mine was 7cm but the only test at the time was for EGFR and I didn't have that mutation so only surgery and regular imaging have been my treatment. There are many different treatments now - and combinations of treatments and many people are living much longer. The treatments the nurse had are now standard of care and there are others that have come along in the last few years. Covid 19 has changed the treatment pathway for many so worth checking with the consultant what may be offered - possibly a combination of chemotherapy, radiotherapy and immunotherapy - some of which is taken orally to reduce hospital visits. Many people are living years with 'terminal but treatable' lung cancer so don't give up. Once you have more information about the treatment pathway, you can look up more information on Roy Castle website to learn more about it. At this stage, little point bombarding yourself with lots of terminology and ideas that may not apply to his situation. When I have chest infections I can barely walk 10 paces but ordinarily I am active, swim regularly, travel and walk. Being positive and trying to be as active as he can will all help even if that's difficult at the moment.... it's good if he's coughing up phlegm but he may also have a chest infection so worth asking his clinician about that - maybe keeping a sputum sample for them to test may help too. good luck.

[Denzie]

Has he had a bone scan or a PET scan yet? Do contact the oncology nurse about his pain.

Like JeanetteR57, I am a long term survivor (9yrs 9months) with stage 4. I was told I might live 10-15 months. Please know that there is no way to tell how long anyone will survive. Even the estimates based on decades of correlating information is not valid any longer as the new targeted and immunotherapies haven’t been around long enough to be a factor.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Sheddy00

So very sorry to hear about your Husband and how difficult this must be for you. It can be quite confronting for both the person and their loved ones, when your loved one suddenly develop a range of symptoms , which impact on your normal activities and life changes very quickly.

JanetteR57 has provided some good advice and it would be advisable to let his specialist know of the ache in his legs. Hopefully you will have the results back soon from his biopsy so treatment can begin.

We have a range of information booklets on treatments and these can be found on this link: roycastle.org/help-and-supp...

If you are interested, there are some inspirational stories from those who have experienced lung cancer found on this link: roycastle.org/campaigns/lik...

Once you have your husbands results we are happy to go through these with you, or if there is anything else you would like to discuss you can either email us at [e-mail] or you can call our freephone nurse led helpline number on 0800 358 7200.

Kind regards

The Roy Castle Helpline

[Mistyglo]

Hi I am sorry to hear your news , we are going through it with my mum stage four, please don’t take my word for being a doctor or not to upset anymore but my mum really struggle with leg pain and sciatica symptoms and we then found that the cancer had spread through her lymph nodes slightly onto her spine which made her cancer incurable then , but being hopeful that her immunotherapy works xx please don’t let this panic you I have just replied because my mum had the same leg pain xx good luck and all my love xx