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Life-limiting illness

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This is bad isn't it.

26 replies

LovelyBath77 · 26/06/2018 14:41

Still trying to understand it. A young person, family relative with lung cancer (never smoked) had cancer in the past. It's incurable right? No-one seems to know. It is the small cell type.

OP posts:
MyNameIsArthur · 27/06/2018 21:16

Hi OP

I'm sorry about your family relative. I don't have an answer to your concern, but I've posted a link to Macmillan Cancer website. They have specialists who can find the answer for you and also a forum to discuss any concerns you have. Take care x

www.macmillan.org.uk/?gclid=CjwKCAjw68zZBRAnEiwACw0eYcEtUj3WncY53VVuMpN0UrzBOUsn7UbPueT-1T4EI9wCvOGbSzDNUBoCvuEQAvD_BwE&gclsrc=aw.ds

1234hello · 27/06/2018 22:39

Sorry to read this Lovely. Flowers

We can’t tell you if it’s incurable or not, sometimes even doctors hesitate in saying this as it can depend how the patient responds to treatment.

Is your relative (not) wanting to share full information with you?

A recurrence of cancer doesn’t necessarily mean a cancer is incurable, but if it has spread to other organs (stage 4) then usually that means incurable. But I’m not an expert on small cell lung cancer. It may still be very treatable even if not considered currently curable - new treatments are being developed all the time.

Life is so unfair. I hope your relative is one of the lucky ones.

LovelyBath77 · 28/06/2018 20:33

Thanks for your kind replies. she is seeing the oncologist soon and will find out about a plan.

OP posts:
Moonkissedlegs · 28/06/2018 20:40

Do you mean the cancer they had previously has come back in their lung? This is known as secondary or Stage 4 cancer, and isn't lung cancer its the original cancer which has 'settled' in the lung. So whether the relative smoked or not makes not difference.

Stage 4 cancer is not curable but is treatable. There are people out there who have been living with stage 4 cancer for many years, and it's possible that there will be lots of possible treatments for your relative.

Flowers for you and your family.

Moonkissedlegs · 28/06/2018 20:43

Sorry, I have just looked into it (I dont know much about lung cancer) and small cell is specifically lung cancer, so the lung is the primary site. Which means most of what o have said above can be disregarded. Sorry xxx

LovelyBath77 · 29/06/2018 09:05

Moon, I'm not sure, it's confusing. All I know is she had a brain tumour as a tiny baby and has surgery and treatment then. and now has been ill and it is lung cancer, mum said 'small cell' but they will find out more today. She's never smoked and online it says very rare in non smokers. I expect they will find out more today at the meeting with the oncologist.

I can only hope that as she is young and physically fit before this it might hold her in some good stead.

OP posts:
girlandboy · 29/06/2018 09:14

Small cell lung cancer is usually caused by smoking. Perhaps it's non-small cell lung cancer and was misheard. If it is, there are different types with different treatments.

Until a biopsy is done they can't really tell. My husband's consultant was adamant a lump in his lung was non-small cell. I maintained that it was a secondary from his thyroid cancer. I was right!

LovelyBath77 · 29/06/2018 09:15

This is what it says on the hospital website, so she is at the stage of seeing the oncologist, I guess that means they have done a treatment plan.

It doesn't say anything about experimental treatments for example immunotherapy, I wonder if anything like that is an option.

The lung cancer service involves several departments and many staff members, some of whom are based in the respiratory department. The full lung cancer multidisciplinary team includes; 6 respiratory consultants, a thoracic surgeon, 2 oncologists, 3 lung nurse specialists, 3 radiologists, a histopathologist, and palliative care nurses.

Lung Nurse Specialists

Our role is to support patients, their families and friends through the difficult and upsetting process of diagnosing lung cancer and receiving treatment.

We can help by:

Discussing the diagnosis
Providing advice and information about any tests or investigations that are needed
Advising on benefits and referring to the appropriate agencies
Advising on controlling physical symptoms
Giving information on any treatments that are offered
Liaising with and referring to community services
Providing written information
Giving time to talk about any concerns or worries
The Lung Nurse Specialists are usually available Monday – Friday, between 9am and 4pm.

Tests and treatment plans

Patients are initially seen in a respiratory clinic and are often referred for further tests such as CT scans, blood tests, bronchoscopy, or percutaneous biopsy. After initial tests, patients cases are discussed at our Lung Multidisciplinary Team Meeting where treatment plans are agreed.

Patients will be informed of their results in a further respiratory clinic appointment and referred on to an appropriate specialist such as an oncologist or thoracic surgeon.

The majority of cancer treatments including radiotherapy and chemotherapy are organised by oncologists, and provided on site at the RUH. Patients requiring surgery and specialised radiotherapy will need to visit the Infirmary to undergo their surgical procedure.

The lung cancer service has close links with community palliative care services

OP posts:
LovelyBath77 · 29/06/2018 09:17

"Small cell lung cancer is usually caused by smoking. Perhaps it's non-small cell lung cancer and was misheard. If it is, there are different types with different treatments."

Yes- that is what I wondered as well

"Until a biopsy is done they can't really tell."- Yes they did one last week. It is apparently the 'common type' but I read the non small cell is the common one...fingers crossed it is the less aggressive one. Although the idea of lung surgery sounds horrible.

OP posts:
girlandboy · 29/06/2018 11:32

If it's the common one, then I would assume that it was misheard and it IS non-small cell. Probably best though to actually see the letter that the consultant has written to make sure.

My husband had a lump (the thyroid cancer) in his left lung in the upper lobe. It was right next to his pulmonary artery so it had to come out. They didn't just take the lump though, they removed the whole lobe, so half of his lung. We found this quite shocking even though they had pre-warned us.
As it turned out, he's fine. He hardly noticed the lack of lung tissue. He had to go for short walks in the weeks after surgery to "inflate" the part of lung that was left in order to compensate for the half they removed. When we looked at x-rays just a few weeks afterwards we could see the remaining portion had nearly filled the gap! He says he doesn't notice the difference. And his scar on his back has healed very well. He was only in hospital for 2 nights.

I hope your relative does well. Her youth will probably help her spring back quickly after surgery. My husband was 57 at the time!

LovelyBath77 · 29/06/2018 17:16

Thanks- oh I really hope there is something they can do. She just had a horrid stint in intensive care with pneumonia and had a pleural effusion which needed drained and has been improving since then.

OP posts:
girlandboy · 29/06/2018 18:33

That's distressing for her.

I wish her well, lung surgery is scary but everyone on my husband's ward sprang back very quickly! Best wishes.

LovelyBath77 · 30/06/2018 07:55

Sadly, it is the small cell one and seems to just be palliative care. So sad, a young person like that. at least is spared the stress of surgery

OP posts:
girlandboy · 30/06/2018 09:03

That is tragic.

I'm so sorry.

Icantstopeatinglol · 30/06/2018 09:11

So sorry OP, a close friend of mine was a non smoker and had Lung Cancer. It’s so unfair and tragic. I hope your relative gets all the support she can get.

Moonkissedlegs · 30/06/2018 10:47

Oh I'm so sorry to hear that. I think I have read before that people who have treatment for cancer at a very young age are then more susceptible to cancer again when they are older.

It's so cruel and so unfair Flowers

1234hello · 30/06/2018 13:05

So so sorry. I hope she is able to access the support and care she needs. This might be useful....even though it’s a Scottish produced thing...
www.palliativecarescotland.org.uk/content/publications/35.-Turning-Best-Supportive-Care-into-Active-Care.pdf

Flowers to you and all the family x

juneau · 01/07/2018 10:06

I'm sorry to see your update OP. Around 15% of lung cancers occur in non-smokers, so it sounds like your family member falls into that camp.

I don't know if reading this article will give you any insight - it's not what you'd call cheerful - but I find Atul Gawande's writing on health and on palliative care to be thoughtful and interesting. The woman in the article is also young (34) and had non-small cell lung cancer (so different to your family member), but with the same prognosis: www.newyorker.com/magazine/2010/08/02/letting-go-2?

LovelyBath77 · 02/07/2018 12:17

Thank you for the kind messages I have had read On being Mortal (?) by Atul Gawande. Maybe as she is female and younger it might help, but not sure. My heart goes out to her.

OP posts:
LovelyBath77 · 08/07/2018 09:42

It is wrong, it is not the small cell it is the non small type (like the one in the article) and they have got some drug which might target the specific type. So that is something. Thank you again for the messages.

OP posts:
Home77 · 04/03/2019 17:28

I'm just updating this with a hopeful message, the meds seem to be working (and they have another one lined up for if it becomes resistant.

my relative is doing well for now and has a good quality of life. I wonder if it maybe helped that she is quite young. not sure. but they say less tumour than when diagnosed.

BettySwollocksandaCrustyRack · 07/03/2019 15:19

So pleased to hear she is doing ok.

flitwit99 · 10/03/2019 12:03

Nice to read a positive update. I hope she has plenty good times ahead

Home77 · 10/03/2019 13:02

Yes I mainly updated as well in case anyone else is going through same diagnosis and wanted to know as the drugs have improved a lot it seems. I'm glad she is having good quality of life, better than with chemo I think as well, makes a difference. she's young also.

IncrediblySadToo · 17/03/2019 22:49

That’s great news 🌷