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New from BC: Stage 4 NSCLC-desparate for hope


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My name is Marilyn, and I'm from British Columbia, Canada. A few weeks ago I was a happy professional woman (an ex-smoker )looking forward to a few more years of work and then an adequate retirement with hopefully some travel. I, however, had a nagging persistent cough which led to a series of misdiagnoses, including, sinus, GERD etc. At MY insistance, a lung XRAY was taken, and my carefully planned world fell apart. Within a couple of weeks I was told I was "terminal" and should get my affairs in order: Stage 4 Non Small Cell (Squamous) Carcinoma. My scans read like nightmares: A 2x3 mass at the right lung apex and a subadjacent

1x2cm mass joined by 10-12 subtissue densities within the right upper lobe and including the upper margin of the right hilium and upper anterior mediastinum. There is atelectasis at the medial right upper lobe with involvement of the right pulmonary artery. A 2.2 cm mass within the adrenal gland and 2.0 cm mass in the right femur were picked up, and firmly placed me at Stage 4.

In British Columbia, there is tight control and direction provided through the BC Cancer Agency with its strict protocols. I am stamped with the label "palliative" and there are platitudes about my "quality of life".

I had to leave a demanding job,and since I live alone suffer from loneliness.

To date, I have received radiation for my right femur at my insistance, and two weeks of radiation to reduce the tumour in the right lung and palliate my cough. I have begun 4

cyles of chemo (carboplatin and vinorelbine). I am lucky so far in that side effects are few except for terrible FATIGUE. I attend a support group once a week, go to an acupuncturist once a week, and have begun work with a clinical psych. once a week- all at my expense.I have done internet searches for alternative therapies and my head is spinning, just spinning. The oncologists here are opposed to naturapathic and alternative medicines.

The statistics are horrible: 20% live a year, median survival time for stage 4 is 8 months. I would like to do well despite the terrible odds and buy as much good time as possible. The Doctors Doom and Gloom feel its their duty to level with us on the dark side, particularly if any of us appear to look hopeful. It is devestating to meet with one of them.

Why would I go through unpleasant therapies if there is little hope???

So here I am, looking for hope and any helpful information people may have.

Thank you so much for reading this.I look forward to hearing from you.

Marilyn (mguttman@shaw.ca)

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You came to the right place. We have lots of hope. First thing to do is forget the statistics. They don’t apply to you. If I had believed what they told me I would not be here now. I didn’t believe them when they said chemo would make me very sick. I never got sick and I am still here. I have never had a bad day from my treatment. You might ask about Tarceva or Avastin, it has helped a lot of us. If you have any questions just ask.

Stay positive, :)


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I am glad that you are hear, but so sorry that you have to be.... I hate that you are so restricted in the care you can receive there. Is there any way to get around their bureaucracy to folks who will agressively treat you?

I'm not sure where you are in BC, but if you're in the Vancouver area, I'm not far here in WA. Just throwing that out there if you need a real in person person sometime. (Which reminds me I still need a passport....)

Jump right in. There IS HOPE to be found and this board helps so many find it!

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statistics are numbers made up by A group of people who are bored with their lives. I am terminal and I do not have cancer. My Late wife was terminal and she had Cancer!! We ahve a 11 year survivor and a 20 year survivor. 20 was strange circumstance and Lots of Luck but it is still 20 years. we also have mebers from Canada who may know the system better than I do. Check out the alternative section here as well as the nutrition section for some thoughts and Ideas. There should be options available for Chemo I would think. Let me know if I can hellp with any research for you, and am sending prayers for you. It sounds like you are on a good track so far. Saying an Easter Prayer and let us know how we can help in anything you need. This site is full of compassionate and knowledgeable people from all over the world also.

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Welcome Marilyn!

Probably the most important thing I'd like to say to you is that you will not ever feel lonely here at LCSC. We are all here.....some of us at rather strange hours of the night too :? !

There have been members from Canada and they have made known that access to health care is a bit different than here in the states. I can't address that much, for I know nothing about it. But I do know that there are stage 4 survivors. So grab hold onto some hope. It sounds as if you are taking charge and I say 'good for you', Marilyn.

When you geet the chance, you may fill out a profile like you see under our names so the folks here can know how to help you better. Might also want to take off your email address. For now just use the PM feature. To remove it just hit the edit button on your post and you can go in and change whatever you want within a post. Better safe than sorry.


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Welcome Marilyn

well, it is too bad you have to go see the doom team. thee is definitely more hope than what they seem to be offering. I have red of other Canadians having a more aggressive and hopeful outlook form their docs. Are you going t docs in Vancouver? Maybe you could switch to some other docs.

Anyway, I hope your treatment brings you very good results and puts your doctors in a more positive frame of mind.

You might read about curcumin, which is a promising supplement for anti cancer properties. There is one member here, "surveyor" who seems to have a pretty good regime of supplements. You have to be careful about using antioxidants during treatment though. some oncs think it interferes with the effectiveness of chemo and maybe radiation too.

Don M

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Hi Marilyn, welcome to the site. Lots of answers and plenty of hope here!!!! My mom was also recently diagnosed with stage 4 squamous cell. I have read many survivor stories from people who have "beat the odds" and ignored all statistics. My mom has been doing very well with her chemo and feels so much better now than she has in a year. I choose to think of this as a chronic illness with many challenges, but one that can be dealt with day by day. Don't give up, and keep us posted on what's going on. I'm here wishing the very best for you. Shelley

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Welcome to a group that will keep

you company for as long as you want.

For alternative therapy check this


and they are in BC, so just push and

push again to get what is the best for


Depending where you go for treatments in BC,

I know a head nurse that is a patient advocate

and looks after the patient and their needs,

her mother had cancer (three times in her life)

and is still alive and over 100 years old they

live in BC so help could be near for you.

Take care and give us news.


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Hi Marilyn,

Right now you are just starting out and it is a lot to take in at first. I'm one month away from 5 years @ Stage IV--so much for statistics. I do not look at Stage IV as being terminal. As long as there is life there is always hope. No one can do it but you. Stay positive and take it one step and one day at a time. Research as much as you can. Turn a negative into a positive. Focus on living, not dying. Focus on what you can do not what you can't do. Not saying is is easy or fun but it is doable. We all have to learn to adjust as we go along. As for fatigue ask for something, I take Concerta and it really helps. Stay with us and let us know how you are doing. Hope this helps, prayers for the best.


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Hi, Marilyn, and welcome here. Statistics are dire, but each person is an individual. My wife had Stage IV NSCLC and was given 9 months to live. She lived 4 years! And was able to help others with the disease. So take heart, and take hope. Best to you. Don

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Hi, Marilyn, and welcome!

To help focus your reading on the LCSC website, be sure to make use of the Search feature. I imagine you're interested in the experiences of some of your fellow Canadians, especially those who have navigated the Canadian health system with some degree of success. For example, you can click "Search" at the top, enter "Canada" in the first box, change "Display results as" to "Posts," change "Return first" to "All available," hit the "Search" button, and be presented with about 500 posts to browse through.

One drawback is that you can't search for phrases, even with quotes around the phrase -- they are handled as separate words. But you can do that with Google and limit your search to the LCSC at the same time. If you want to see posts about Stage IV, you could put this in the Google window:

site:lchelp.org "stage iv"

or you could use the Google advanced search page.

I don't think you need any motivating from this corner, as you seem to be very proactive already. My best wishes and Aloha,


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Hi Marilyn!

So sorry you have to be here, but don't give up hope and keep fighting. My mom was diagnosed with Stage IV NSCLC in January and is fighting it hard. She's doing great so far. Make them give you the treatment you deserve and the chance to fight and win!

Best of luck--Susan

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Hi Marilyn

I hope you are feeling a little better when reading what people with stage IV have told you about stasticts.

I do not know anything about medicine in Canada, but hopefully you will hear from people who live in your area.

If need be there are wonderful cancer centers in the US. If you have too you may consider coming here to a good comprehensive cancer center. I know there must be some in Seattle.

If you feel you are NOT getting the treatment you deserve then by all means reasearch other possibilities. This is your life, and there is hope out there and all kinds of treatments. Please do whatever you can go get treated the best possible way.

Sending prayers your way. Keep that positive attitude!!

You are never alone here. We are here for you 24/7. You do not have to go through this alone.

I hope you hear from your fellow Canadians who can help you.


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