im new to this only joined this lung ... - Lung Cancer Support

Lung Cancer Support

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im new to this only joined this lung cancer rollercoaster ride on Friday...........

booboo79 profile image
6 Replies

Hi

like the title says im new to this, never thought id be sharing info nor asking questions but here i am

im 44 and my amazing mum who at age of 68 was diagnosed on fri (18th aug 2023) with Lung cancer so please forgive the terminology as its all new to me and also please forgive my ignorance

we went to clinic after the pet scan the biopsy and we were told my mum has a 5cm tumour in top of her right lung and it has spread to a lymph node in her chest so it means they cant offer surgery - we are now waiting to see the oncologist and find out the exact details and treatments available , at the same time mum is waiting for a mammogram as she also has a 7mm lump in her breast (my mum never does things easily !!)

i guess im still feel in the dark as we have to wait - its already been a waiting game to get to here and i am just hoping that the diagnosis still gives us a good shot at any treatments

never heard the word cancer said in so many conversations in a short space of time

mum is 68, is a smoker currently using pain relief patches paracetamol and liquid morphine to manage her pain - whilst we await the oncologist

i dont know how i feel i guess its numb what i was going to ask is this normal ? i am an only child no brothers or sisters so i am doing everything for my mum - were a team and i want to take as much pressure off her and let her build her body strength so if she can have treatment she is in the best possible position

what was it like for you ? when the diagnosis came ?

thank you so much for letting me voice my concerns i just really dont know how i should be feeling and what normal is going to look like as we prepare for the oncology appointment the mammogram a head and brain scan another biopsy all whilst not knowing much xxx

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6 Replies
Denzie profile image
DenzieModeratorVolunteer

Welcome to the Go2 Lung Cancer support board. I’m glad you found us. Already you are doing the smartest and best thing by accompanying her to these appointments. It can be scary and overwhelming at first. I am the daughter of a mom with lung cancer and I well remember feeling she’ll shocked those first days and weeks. I am now a 12yr 10 month survivor of lung cancer myself.

This link that I am sharing will take you to a free, educational handbook that will answer many questions and inform you of what you will need to know. It’s written in plain English so us non medical types don’t have to flip to a medical dictionary to puzzle it out. https:

//go2.org/wp-content/uploads/GO2_Foundation_Patient_Education_Handbook_5th_Edition.pdf

They will be testing your mum’s tumor to learn if she can have a targeted therapy or if chemo is a better choice. She will likely be able to have an immunotherapy drug which helps the body’s own immune system overcome the cancer. It can take a couple weeks to get the information back

Until you have all the information from the breast biopsy they won’t be able to determine a treatment plan. They will be looking to learn if this is a second primary cancer or if it’s lung cancer metastasis to the breast or breast cancer metastasis to the lung.

There is a lot of hurry up and wait when getting a diagnosis and rollercoaster fits the description perfectly.

In the meantime, mum may be doing a lot of self blaming. No one deserves cancer. No one. Only about 15% of smokers get lung cancer, sometimes it just plain bad luck. Please let us know what you learn. We can help manage and overcome side effects

JanetteR57 profile image
JanetteR57

Hello and welcome to the group. As Denzie has said, at this stage, it can be quite overwhelming as there are so many tests required to determine different aspects about the type of tumour it is as there are now many treatments -- many more than when I was diagnosed at 52 in January 2011.

There is a UK lung cancer charity Roy Castle lung cancer foundation which moderates the UK element of this site on Health Unlocked. It offers support of every kind - phone line, in person groups, online information, printed information you can have posted and much may be available in your local Trust/hospital or cancer support centre if you're lucky enough to have one.

The majority of UK patients are detected when surgery is not possible - I was fortunate there as my 7cm tumour was removed with open surgery in Dec 2010 - nowadays most lung surgery is done via keyhole which wasn't around then. I was back at work and swimming a few months later and been active, worked and swum ever since. If inoperable, there are a raft of treatments and many patients end up on a combination of approaches dependent on several factors - the biology/characteristics of the type of cancer (there are several types), the stage (how far it may have reached and where) and the fitness of the patient. In your mum's case, they'll also be checking whether the two are related i.e. is it breast cancer that's spread to the lung or are they two separate primary cancers. if it is a cancer from a different site that has spread to the lung, treatment may vary slightly from lung cancer treatment.

I'm a never smoker - there are many of us who develop lung cancer - so she should park any guilt/belief about her smoking although if she can reduce it or quit, it will improve the effect of any treatments. You're right in helping her build up strength for any treatments - keeping active is really important - walking around the house, garden, street is good as lying/sitting around doesn't really help keep the lungs active. There are no pain receptors in the lung so it may be the pain is from her breast.

Yes it's normal to feel numb - we kind of go into some sort of auto pilot where our brain is hearing the word 'cancer' and blocking out other stuff. if you can attend her appointments with her and even record the consultation, that can be a huge help as we often forget what was said, getting hung up on one word or one sentence the oncologist says.

Do contact Roy Castle lung cancer foundation and if there is one near where you live, Maggie's centres are a source of support for many too. Macmillan also offer a telephone support line and many online resources for anyone impacted by cancer (not just patients) and at any stage including investigation stage. Some treatments may have a different drug name on international sites but keep off google - so much of the information is outdated and inaccurate. Trusted sites like this, GO2 foundation, Roy Castle lung cancer foundation, CRUK and Macmillan all update sites regularly - the latter being more generic for every type of cancer whereas Roy Castle only deals with lung cancer. (all types)

This early stage can often be the most overwhelming and uncertain waiting game although waiting is a major part of the lung cancer pathway for tests, for results, for treatments but never give up. good luck to you and your mum.

roycastle.org/about-lung-ca...

etpd2226 profile image
etpd2226

Welcome, to our group. You will find a lot of helpful information on this site. It is terrifying in the beginning. I am a 3plus year lung cancer survivor and doing well. Once the tumors are tested, treatment will be determined. Just being there and listening without judging will help your mom. Everyone deals with can't in their unique way. There is no right or wrong way.

It may be helpful to get support for you as well. This is difficult for patients and their loved ones. Many cancer centers offer support for caregivers too. Take good care of yourself. In my thoughts and prayers. It takes a team of many people to see us through, especially in the beginning. 💕🌸

Kanafapot profile image
Kanafapot

Hello there

I’m 71 and was diagnosed with lung cancer in March last year. I was fortunate in that I had one 43mm tumour which was removed by video assisted surgery (VATS). The waiting was by far the worst time. TBH, I didn’t want to talk about it but of course I answered any questions for my (3) daughters. They were also able to talk to one of the specialist nurses at the hospital to ask questions. Both Roy Castle and MacMillan have specialist nurses that you can contact as well.

Once I knew I was having an operation the waiting for it to happen was also stressful. Since then, I’ve had morphine just post -op but didn’t need it for more than a couple of weeks.

All of us are individuals and have different ways of handling the news or no news. Maybe you could ask you Mum how you can best help her? She may not know and maybe just want a cuddle.

Please don’t be tempted to consult Dr Google. Much of their info is just not up to date. These days so much can be done to help to contain cancers or even cure.

I wish you both all the best. Love xxx

Jenniferroseolson profile image
Jenniferroseolson

I am glad you are reaching out here. As Kanafapot said above, Google and the web will take you to lots of dark places based on inaccuracies. GO2Foundation will give you the info you need and that you can trust. Also, don’t take a look at the statistics, because your mother will respond to treatment uniquely.

Like Janette, I never smoked and was diagnosed Stage IV at age 44. Anyone with lungs can get lung cancer, so try to help her with any of her feelings of guilt about her smoking history. Blame is totally wasted energy.

Waiting for test results, for treatment plans, for treatment to begin…very difficult to wait and be patient and then wait for the next thing. Wishing you the very best.

Jenn

StLScorp profile image
StLScorp

Welcome to the board ...

I can tell you that your mum is now having the wildest emotional ride ever and really hope she has good team that also includes a licensed counselor to help her with all the emotions she is going through.

I say that from experience ...

Jan, 2020, I was diagnosed with Stage IV metastatic non-small cell lung cancer having a 7.5 x 5.8 cm mass on my upper left lung lob and a 2.4 x 3.7 cm mass on my lower left lung lob with several lymph nods involved as well ...

The outlook was not very bright according to the doctors...

But I have a great oncology team at Siteman Cancer Center here in St. Louis, MO. With their help and ingenuity in treating me, I have been in remission for over a year now or as I look at it, I am in remission one day more since it really is one day at a time.

Since both surgery and radiation were out of the question, they first started me on a combo of chemo and Keytruda for the 1st 6 months and then only Keytruda until April of 2020 when it was determined I was in remission.

I will continue to get CATscans every 3 months until April of 2024 and the every 6 months for the following 5 years.

I will pray for you mum AND you as both of you battle this nasty disease

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