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The Roy Castle Lung Cancer Foundation

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scraapi profile image

Hi everyone

I am 54 and have primary cancer in my lung and secondary cancer in my spine. Diagnosis was in June 2021.

I was having some radiofrequency treatment on my back and a few days later was in so much pain. Spoke to consultant who was surprised I was talking about so much pain and requested an MRI scan. At that time we were thining worse case scenario would be something had gone wrong with the radiofrequency treatment.

The MRI scan shocked everyone. It showed that I had cancer metastasis in my spine, deposits in my pelvic bone and that my L5 bone at the bottom of my spine had collapsed.

On admission to hospital I was told that if you have cancer in your bone, then it has most probably spread from somewhere else. They did a CT scan that confirmed I had primary cancer in my lung.

A couple of days later I started a 5 day course of radiotherapy for my back, although there was no cure, just to hopefully slow it down.

2 weeks later I was allowed home. What was our dining room had now become my bedroom, with a hospital bed; commode; wheelchair and zimmer frame.

My lung cancer also is incurable. I was told by my consultant that he would be 'hard pushed' to offer chemotherapy as he did not think my body would be strong enough.

I do not get any pain from my lung, but I do get a lot from my spine, especially at night, my lower back seems to seize up, and my legs.

Fortunately my cancer had a mutatation that allowed me to try targeted therapy. This comprises of a course of tablets, Osimertinib (Tagrisso). I have a blood test on the Friday pick up a fresh supply of 28 tablets. After that I go back and have a further blood test on the Friday and again, pick a fresh supply up on the Monday.

I started this treatment in August and fairly soon after that I was back in hospital because my feet and legs were swollen. I had a blood clot so was now on blood thinners. My blood sugar levels were really high so I was also a diabetic, having to inject insulin. 11 days later I was allowed home.

8 days later I am back in hospital with cellulitis in my other leg and problems with my breathing. Intravenous antibiotics and blood transfusions seemed to stop my cellulitus and my breathing got a lot better too. A further CT scan showed that part of my blood cloth has moved by my lung. 2 weeks later I was allowed home.

I have now been home for about 3 months which is great. I suffer from some side affects, mainly sickness now and then and being tired all the time.

I had a CT scan on Wednesday thorax, spine, pelvis. I have a consultant telephone call tomorrow to hopefully find out if anything is working. I had a call last Friday from oncology who said they want to do a full spine MRI to rule out any further cancer deposits in my spine. She said she wanted to give me a heads up so when the hospital rang then I would know what they were ringing for.

I am a bit confused as to why they didn't just tell me this tomorrow.

Anyway I will update after tomorrow where I should hopefully know more.

Thanks for reading.

19 Replies

Dear scraapi

Welcome to the forum and sorry to hear you have had such a rough time with everything. With regard to the MRI, which will provide more detailed imaging, it could be as simple as to give you as much notice as possible prior to your consultation tomorrow.

It sounds like you are being well looked after and the oncology team are being very thorough.

This link will take you to our booklet on bone metastases just published this year: roycastle.org/app/uploads/2...

You may have had a lot of information already, but if not we have many booklets from living with lung cancer and to the different treatments used:

roycastle.org/help-and-supp...

Hope you hear from others who have been through the same as yourself and you will find encouragement and support.

If you are interested we have online support groups through zoom and if you would like to register for these you can do so through this link: roycastle.org/help-and-supp...

Hope your symptoms are managed well and you have plenty support at home.

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Kind regards

The Roy Castle Support Team

Thank you so much for all this information, I really appreciate it,Best wishes

Oh my goodness you must be a very strong lady. Wishing you all the best for your scans, results and treatments xx

Thank you very much for your message, it is very nice of you. Best wishes

Just wondering if you know about the EGFR Support Groups. If it’s the EGFR mutation that you have.There’s egfrpositive.org.uk and EGFR Resisters egfrcancer.org both worth looking at joining. Also Roy Castles Targeted Therapies Booklet.

I have ALK mutation and get support from specific ALK groups.

Thinking of you today x

scraapi profile image
scraapi in reply to Bow-19

Dear Bow-19Thank you for your message.

I am not aware of any if these and are very grateful for your information. I will certainly look and join the ones you mention.

Thank you very much once again.

Bow-19 profile image
Bow-19 in reply to scraapi

Pleasure. Wishing you the best response to your treatment.

I think when you join the groups you will find people with similar stories to yourself. That’s what happened to me

Can't give any advice but wow! What a strong lady you are, keep that strength and good luck with your results 🤞 sending positive thoughts and 🙏 😘

scraapi profile image
scraapi in reply to Eglingham

Dear EglinghamThank you very much for your message. I am trying to be strong.

Best wishes

That's a lot to deal with - and you've come through so much already. Many lung cancer patients aren't eligible for curative treatment but receive other treatments to manage symptoms including targeted therapies, radiotherapy, chemotherapy and immunotherapy but so much depends on the specific characteristics of the tumour as others have suggested. You could ask your oncologist which mutation you have to join specific support groups but I'd also encourage using Roy Castle lung cancer foundation website and support services that offer a range of support by phone, group support and information on no end of aspects of living with lung cancer. As you've found out, pain doesn't impact the lungs themselves as there are no pain receptors in them but the surrounding tissues and structures can create pain if it advances but there are treatments including pain management to try and help that. It sounds as if you're being well looked after and I'd look on the bright side that your oncologist thinks enough to call you to update you rather than worrying that it might be a warning of something else - sadly our imaginations run riot when awaiting results - and we can often read things into situations - whether too slow, too quick, not the same contact or centre etc but better to try and deal with the 'what is' when known than the 'what if' as anxiety only makes things worse. good luck to you.... let us know how you get on.

scraapi profile image
scraapi in reply to JanetteR57

Thanks so much for your detailed message, I really do appreciate it. I spoke to the encologist today and they say things look positive with the Osimertinib so that is really good news. I do, however, need an echocardiogram (excuse spelling) and a full spine MRI so will update once I have those results as well.

Many thanks once again.

Hi. I am not sure whether I am putting my update in the right place. Please could someone tell me if it is wrong and where to put it correctly. Many thanks.

Good news from CT scan. My oncologist said the report included words like 'reducing' and positive so Osimertinib is working.

The scan also showed an amount of fluid around my heart so organised an echocardiogram. I had this on Monday and the lady performing the test was so nice. She told me there was a 'moderate' amount of fluid. She obviously can't say too much but she did say it was not a 'small' amount, but also was not a very'large' amount. My 'moderate' amount may need some treatment. My oncology team will obviously make that decision if necessary so am waiting to hear on that.

Also on Monday (the hospital called as they had a cancellation) I had the MRI on my back. That is such a difficult position for me to lie in, especially for an hour!! Anyway done now and again, wait to hear from my oncology team.

Thanks again for reading.

Best wishes

Celia xx

I did try a different way to post and have done that as well. Please accept my apologies all of you. I really hope I get used to this and learn where to post properly. Apologies again everyone1

sassassas profile image
sassassas in reply to scraapi

scraapi don't worry at all! No-one will judge you on this forum 😀💕

Hi scrappingYou've been through a terrible time

I've had radiotherapy on my spine and MRI scan.

Good luck and keep in touch

Pam

scraapi profile image
scraapi in reply to

Hi LoimieThanks a lot for your message. a lot has happened since this post. It is like living in limbo land, you are always waiting for results of something else, may be an MRI, a CT scan, bloods that may answer some of the questions you had but not all of them because they need the next lot of test results which you haven't had yet !!🤣😂

My mind was fairly straight at the beginning of last week after speaking to my consultant but had a call from an oncologist nurse today thay has confused everything again!

I am not sure yet how to navigate this site yet properly and don't know where to find more posts that you have written and would be very interested to know more about your condition/history. Is it possible to either let me know by replying to this or directing me within the site. Many thanks and good luck with everything xxx

You say letting you into the siteLots of good people on here, who will support through your journey

Don't ever be put Lots of good treatments coming around all the time, that's why you have trial blood's taken to see if you have markers and are suitable for a trial. I've got NSCL Stage 5, travelled to lymph nodes, vertebrae that's now compressed my spine, liver just small area, brain, which they zapped successfully only one go. I have every faith in my radiotherapy which they say is doing the job. My chemotherapy is working too. So I feel all is as well as expected. Chemo can be hard but I'm determined to get there.

Keep in touch and I'm supporting you.

Pam

scraapi profile image
scraapi in reply to

Gosh Loimie, you have been through such a lot. Thank you for your message and Good luck with everything xx

in reply to scraapi

Thanks scraapi and best wishes to you too.

Pam

xxxx

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