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Mom was just diagnosed and so glad I found this site


Dana L

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So.... My mom was having back pain since September and after seeing numerous doctors they said it was sciatica . Well after this week the pain was so bad she had an MRI which showed spine lesions. We took her to the ER and after tests our world was rocked when a CT showed hot spots in her lung, liver, and bones and two lymph nodes. Her primary doctor said I told you so bc she is a smoker and said the only question I should ask the oncologist was how long she has to live. Totally unacceptable to me. I felt like I was just given my moms death sentence. After speaking to a friend who is a nurse at fox chase she told me stage 4 is not a death sentence, while yes it's ideal to catch early treatments can offer long quality of life. Basically I just would like to hear some encouraging words.... We are ready to fight and will not take no for an answer

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Hi Dana,

Welcome to LCSC,I am really sorry to read of your Mums diagnosis.Firstly, my GP made a unsolicited comment to me,that I had only 2 years left following all my treatments.Well here I am 5 years later,having my final check up last Tuesday,with my oncologist telling me,he had every confidence that I was now cured,that he did'nt expect to see me again,so go away,we shook hands and we parted.

Going to back 5 years to that initial period of just being diagnosed,these dark days,where I felt there was no light at the end of the tunnel,I really despaired that I would never be able to cope with the cancer journey ahead of me,the proposed treatments that my multi-diciplinary medical team had planned for me,it was 4 cycles of chemotherapy,in order to shrink the tumour in my upper right lung,which if successful it would make my cancer operable to proceed to having a upper right lobectomy.

Well I am a natural born worrier,I worried about the chemotherapy making me violently sick,my hair falling out,the surgery would be extremely painful and leave me a breathless invalid.Those and I am sure so many other worries were conjured up by my overactive brain.I am pleased to share with you for all my worries,nothing ever came even close to my imaginings,I sailed through the chemo and the surgery with ease,well post surgery my wound site was a bit achey for a while,but certainly painful would have been an exaggeration.

Post treatments,I spent some time looking for lung cancer survivors who against the odds had beaten off their cancers and were now enjoying their lives.One day I opened up a Glasgow evening newspaper to read an article about a lung cancer survivor called Robert Lowe starting up a lung cancer support group in a local hospital to me,with a lung nurse Penny Downer,well I thought what a pair of auspicious names to set up a lung cancer support group- Lowe and Downer?.Well as i read on,Robert was first dxd with SCLC and given only two months to live,he so wanted to live and asked his Docs to give him treatments that offered his best chance to beat his cancer.He was given a stong regime of chemo that required him to be hospitalised during its administation period.It was so severe on his body that his family were called to his bedside on more than one occassion,since his docs did'nt think he would see the next day.Well,Robert recovered,to his doctors amazement.That was in 1993,then in 2007,Robert is dxd now with NSCLC,has his treatments goes onto live until 2013,he died cancer free,the lung cancer never returned.

What I have illustrated are two examples of people who have faced a poor prognosis but were successful in their fight with lung cancer.There are many more of such persons as you will discover from the other buddies on this wonderful site.Being here you can share your anxieties,ask questions of others here who will be only too glad to support you and share with you their experiences.

About you,supporting your Mum through this difficult time can be so rewarding for not only you but your Mum too,it is a difficult road and you should be cognizent of your own emotional and physical needs,meetings with doctors,appointments etc can really wear one down,so make sure you are having support too from family and friends,don't be slow in asking for help from your friends when you need it.Your Mum needs you at her side,you can best help her by being well yourself.

I am here if you need someone to share with anytime,I will respond ASAP.There are many other here will support you also-you are not alone.

Please pass onto your Mum my best wishes and that her proposed treatments go well.

Bye for now.

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Eric thank you so much for replying!!! The hospital we are at does not have a good reputation for dealing with this stuff- so as soon as we get her pain controlled I am getting her somewhere else. I just don't want to waste time- but everyone thus far has said waiting a week or so getting somewhere new won't make the cancer grow or spread. The statistics online are terrifying! But everyone is different so from now on no statistics or docs saying time left- we are gonna fight and not give up. You all on here give me such hope- and I am brought to tears when I read your stories. Hearing the cancer word is such a blow! But finding this shows people make it thru even stage 4!!!!

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a lot of our Members have outlived their doctors prediction on how long they have sop please pay no attenuation tot hat part of a conversation and yes go get a new Oncologist as soon as possible... you need one that will fight for you and not give up ..

Take a look through the good news Forum here and also the inspirational forum for some great up lifting info and stories of hope and inspiration.... ask lots of questions and give us all the details ..

we are always around even if you do not see us here for some reason... Sorry you ahve to be here but glad you are ...

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a lot of the fear kinda goes away when a treatment plan is introduced because then you start to feel and realize your fighting the disease and accomplishing something to be done about getting rid of this disease.. so til then get all the tears and negativity out of the systems..

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Many of us here remember Dean Carl.Many newer members mabe don't.Dean was one of our very supportive and inspirational members here and was blessed with much wisdom.We lost Dean a while back but his wisdom still exists here in the Path Less Traveled Forum.This is a poem he wrote himself back in March2004.

Cancer!

Oh, how we fear that word!

I say to you, "I have cancer"

And I watch you,

refuse to hear.

I say to you, "I have cancer"

And I watch you,

bury me with your eyes.

Yes, I have CANCER.

Please,

Please hear the word.

But do not lay me in my grave,

At least,

Not just yet.

Oh, I know this disease

Will someday take my life.

The chances of that are,

Shall we say,

Rather high.

Yes, I know that which will take me,

From this world.

But not today!

But then again,

That's all I've ever had.

Today.

And to tell the truth,

(which I've been known to do at times)

That's all any of us ever have.

Today.

So today, I think,

I'll get up early,

And watch the sun set fire to the sky.

Today, I think,

I'll tell my wife,

"I love you", at least a hundred times.

Today, I think,

I'll find a way to laugh so hard,

I'll give myself a stomach ache.

Today, I think,

I'll go to the cliffs above the ocean

And ask old man Ocean what he knows that I don't.

Today, I think,

I'll climb down into the abyss,

And spit in the Devil's eye.

Today I'll do so many wonderful things.

And those I don't get done today.

I'll do tomorrow when tomorrow becomes today.

Yes, I have cancer

Yes, I will die from it someday.

But not today.

Not today.

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Hi Dana,

Welcome to this message board. This groups is full of HOPE, inspiration and care. It's like that famous show that was on not long ago where everyone knows you by name. Except 110% better. Please keep us updated in how you & your mom are doing. You may have already seen this but we have an "Ask the Experts" tab on our web page. You can research questions other people have asked or you can submit one yourself. Also, our Support & Advocacy tab is very informational too.

http://events.lungevity.org/site/PageSe ... TheExperts

Talk with you soon.

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Cindy and Nikole thank you for the welcome....although I wish we met under different circumstances ... Reading the stories is what gets me through the day. Biopsy came back and showed adecarcinoma....however the doctor seemed pleased that she is young and healthy and should tolerate treatments. I know it's a fight but you can make it! And for us it's not an option for her not too. If it weren't for the pain we would have never known

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Spoke with oncologist today.... He feels the fact that she is in good health and no other symptoms means she would tolerate treatment.... Sending biopsy to check for mutations... I know it's bad news but I'm feeling so positive like she really has a shot. Am I being naive? Really need some encouraging words.... I'm looking at she's not dying of cancer she is gonna live with it and fight and have quality of life. The positivity is helping

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Adenocarcinoma is most common type of NSCLC and is also most researched that is great news to get.... keep up the positive energy and attitude..

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Dana - Welcome, although I am sorry you had need to find us. It sounds as though you have already learned a lot - especially not to listen to negativity, particularly from doctors! It never ceases to amaze me how some of them can be so ignorant and out of date. It is good news that she is being tested for mutations - it can open up many more options, and new they are working on lots of new targeted therapies. I live in a small town and we don't have a "cancer center", so my tumor wasn't tested because it was standard practice then. I hope you live in an area where your mom can have access to a real cancer center. It sounds like your mom is in a good place to go through treatment. Being healthy to start with, and having a positive attitude, makes a huge difference.

Please keep us posted on how your mom is doing.

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Dana,

Any word on gene mutations yet? It IS encouraging news that she is young and otherwise healthy. Keep surrounding yourselves with hope. It's a long road, but it's been traveled and survived and there are survivors.

Hang in there. Update us when you can.

KatieB

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Hi all,

Update... We have been back and forth to sloan in NYC, they are wonderful. Mom is 3 sessions into her radiation to relieve back pain... They want to do ten. They also want another biopsy... Clinically they thing primary is lung but they said previous biopsy from other hospital isn't concrete and they want to be certain. No word on mutations yet but they said they are going to send their biopsy out again. Met with onc...again he confirmed he would classify her healthy and feels she can tolerate treatment. After radiation and given biopsy results confirm previous findings he wants to start carbo/alimta/avastin. I'm feeling positive but that fear of what if she doesn't respond always lingers. What does everyone think of this plan?

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this treatment plan sounds standard. If she does have a gene mutation the treatments may then change to a targeted therapy but from all accounts sounds like she has a great medical team who are on top of things.

Keep us posted on her progress and treatments and on YOU too.

Hugs,

KatieB

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