Confused :-( - Lung Cancer - The Roy Castle Lu...

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Confused :-( - Lung Cancer

Staceylee profile image
7 Replies

We have been on one big emotional rollercoaster!!.

My Mum age 57 began back in November she started to get severe pain in her chest, we took her to A&E where they done a X-Ray, the X-Ray showed a shadow on the lung.

On our first appointment seeing a Lung Specialist in December 2016 we was advised that he believed it to be a Abscess and was convinced it was not Cancer. he asked us to go for a CT Scan and to return after Christmas.

When returning to see the Consultant he apologised and confirmed it is now looking like it is Cancer and sent her for a Biopsy and PET Scan.

When getting the results the consultant confirmed it is Cancer - but early stages and that she will need to have a Lobectomy to remove one of the 1 x lobe.

2 weeks later we then come face to face with the surgeon- who had a complete different view on what we had been told by the Consultant. he confirmed the Cancer had spread to the Lymph Nodes and had wrapped it self around her Ribs and was in the Cavity Wall.

Mum had the operation in March - she had one Lobe and bit removed 2 of her ribs and they also confirmed it had spread at a distance and classed this as Secondary Cancer. (The Cancer was all removed in the Operation and the only reason they done this was because of her age (57) )

We was then introduced to the Oncologist in April, he gave Mum her results, she was diagnosed with Stage 4 Cancer after the operation and was offered Chemo, the Oncologist was pretty confident that mum would be ok as he said it was not a normal stage 4 Cancer.

However 6 weeks on from the operation mum was in server pain again and we had to rush her to hospital, we was first told it was the nerves that was causing the pain. We asked them if they could do a CT Scan and to our horror Mums Tumor has come back within six weeks and is twice the size:-(.

They've given mum a week of radiotherapy and a different Chemo to one she was originally going to have, its more a Palliative type to hold the cancer back and to pro-long her life as long as possible.

Feeling so confused with it all and I feel I am in a bad dream.

Mum is doing really well and started her first Chemo session yesterday. suppose we just have to take each day as it comes.

Just don't know how long she has left and no estimate :-( obviously hope she is with us a long time - just confused with it all - the last 6 months we have gone from an Abscess to a treatable stage 4 Cancer to its all back and terminal.

Apologise if I have gone on just need to get this off my chest.

x

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Staceylee
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7 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Staceylee

So very sorry to hear about your Mum and the journey you have all been on. There has been such a lot to deal with in a short space of time, having some hope to little is very hard for all of you. It is so important to express how you are feeling, especially if you feel you have to perhaps try to hold it together for your Mum and maybe other people, which takes a lot of energy to do this. It is not usually asked of us to do this, but human nature as it is we try to be strong for the other person.

It can be very overwhelming all the emotions and anxieties during this time, I hope you have a good support network in place for yourself.

If you are interested there are support groups in the UK for lung cancer and you can find a list of these on the following link:

roycastle.org/how-we-help/s...

Maggies centres are throughout the UK and they can provide emotional, practical and financial advice: Telephone no. 0300 123 1801

maggiescentres.org/

Your Mum should have a lung cancer specialist nurse allocated to her, if not this can be requested by her specialist or GP.

The Macmillan nurse helpline number is 0808 808 0000

If you wish to discuss anything with us you can call our free nurse led helpline number on

0800 358 7200

Thinking of you all

The Roy Castle Support Team

Staceylee profile image
Staceylee in reply to RoyCastleHelpline

Hi.

Mum does have a Lung Nurse and she has been really good. she is in touch with Palliative Care, McMillan and St Francis Hospice.

Mum feels She don't need the support yet as she feels ok. I personally think she is Indenial and not accepting her diagnosis and I know deep down she is really scared.

But when we approach her about this she just gets upset and does not want to talk about it.

I suppose we have to accept this and wait until she is ready.

Thank you for your advice.

xx

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle in reply to Staceylee

Dear Staceylee

It looks like you have all the good support available for your Mum, hope you take care of yourself also. It is hard when they dont want to talk about it, and everyone reacts differently.

Be good to yourself and hope you all have many special moments to come.

All the best

The Roy Castle Support Team

hedgehoggy profile image
hedgehoggy

Hello Staceylee

Welcome to the forum but I'm sorry to hear all this. No wonder you are confused I would be too. It might be when you are with the Onc. With mum next, to look at the scans together. When I looked at mine (although not a medical person) it was explained to me the before and after images. i.e. it showed a mass and then it didnt.

I was not on stage 4 but I had part of my lobe operated on in 2012. I do feel for you it can be so very frustrating not knowing who or what to believe.

But your mum sounds like a tough cookie to me and doing very well. Loved ones suffer more in some respect if you know what I mean.

Keep strong for her and remember to arm with a pen and notebook for all your questions you might have when you see the Onc.

With all best wishes

Hoggy

Sending love hope and prayers Staceylee in a similar situation but different too.

Hillyblue profile image
Hillyblue

Ask your oncologist to check for any targetable mutations if this is NSCLC. There are drugs out there which treat these and can be very effective at controlling the cancer

Jallen1338 profile image
Jallen1338

Dearest Staceylee,

I am so very sorry to hear about your Mom. I am too in the same situation as you. My Mother is 58, she just ahead a birthday a couple of weeks ago. She had breast cancer twice 2002/2011. Lumpectomy both times and started Tamoxifen the last time. Her Tamoxifen was completed in 4/1/15. In January of 2016 she underwent an elective breast reduction/removal to ensure the cancerous lobes would be removed and she wouldn't have to face this again. Last summer/ fall in September she began coughing, thinking it was allergies she didn't seek treatment until November. By then she had coughed up some blood. They did an X-ray and told her (at military urgent care) it was bronchitis. She followed up with her Primary care doctor within a couple of weeks as told, he too treated her for asthma & bronchitis, despite her telling them she was having horrible right shoulder pain. This past April (6-8 wks ago) she found a lump on her right collar bone area. By the 5th of April we had a diagnosis of Small Cell Lung cancer. They did CT scans and an MRI and She had a biopsy and it went haywire from there. We have now finished her second cycle of Palliative Chemo as they told her it was extensive Stage 4 and had already spread to her lymph nodes, liver and pretty much everywhere. Two weeks ago we had a pet scan due to increased pain, she has widespread bone metastasis with two very unstable spots in her neck at C1 and both femurs and upper arm bones. She has began "Palliative" Radiation for the bones. This has all escalated very quickly and I am beside myself. I am an RN and know far too much to stay very positive yet I do, for her and for my children who are 14-12. She is taking Morphine extended release and pain killers for break through as needed. My poor poor mother has MORE will and strength than I could ever imagine. I wish the best for you & am thankful I found this forum as I cannot talk to anyone else in this matter without breaking

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