Journey With Cancer

Contributions from

These are the experiences, ideas and views of each individual person featured here. Your own situation may be different and these ideas may not work for you.

Craig
Diagnosed in 2013

Craig's Journey With Cancer

  • Diagnosed with Stage IV lung cancer in February 2013
  • Multiple radiation therapies in March and December 2013
  • Targeted therapy
  • Clinical trial in July 2014
  • Pulmonary embolisms September 2014 – now on blood thinners
  • April 2015. Tests show slight progression, but no treatment changes yet

Unfortunately there's only one lung cancer support group in all of San Diego. It meets on a weekday afternoon once a month, so it's not easy to get to since I'm working full time.

In terms of meeting face-to-face with other lung cancer patients, there's been very little of that from my end just because it hasn't been available. However, I did hook up with a fellow survivor through my blog and it has been a wonderful opportunity to meet in person on an occasional basis when he was in town.

Most of my communication with other lung cancer patients has been electronic, whether it's on Facebook or through blogs, or occasional phone calls.

Dann
Diagnosed in 2006

Dann's Journey With Cancer

  • Diagnosed with Stage III lung cancer in 2006
  • Chemotherapy, then surgery, then more chemotherapy
  • NED (no evidence of disease) between 2007 – 2011
  • Diagnosed Stage IV lung cancer in 2011
  • Two more rounds of chemotherapy
  • Targeted therapy
  • Clinical trial

When I was diagnosed

I thought I was dead. I'm not alone on that. The very hardest time is the first few days or few weeks after being diagnosed.

Everything else combined is easier than first getting diagnosed and letting that sink in. I did not have any way of thinking about it that was positive or healthy. You need some time to think about it and realize there are ways to cope, there are some opportunities that come with cancer and you can use it as a way to actually grow.

When one person in the family gets cancer, the entire family gets cancer. Not literally, but everyone's life is affected and it's important when you are considering your actions to consider how widespread the impact really is.

Deena
Diagnosed in 2012

Deena's Journey With Cancer

  • Diagnosed with MPLC (Multiple Primary Lung Cancer) in 2012
  • First tumor: A1-Grade 1 NSCLC-Adenocarcinoma: KRAS mutated. Surgery and removed in 2012
  • Second tumor: A1-Grade 2 NSCLC-Adenocarcinoma: EGFR mutated. Surgery and removed in 2013
  • Currently CT Scan every six months, to follow several small nodules

It's extremely important to get the knowledge so you don't miss something in your treatment.

There should be a checklist of different things that you look at to say "Do you know this, do you know that about yourself."

Second opinions are always really good. It's very complex - any cancer is complex.

Bottom line, you have to be your own advocate. It's hard sometimes to gather all of the information available.

I never got any advice other than "Go, have a happy life and forget about it" - and that's really hard.

It's really hard to enjoy your life when at the back of your mind every time you get a headache or every time you cough you wonder if it's coming back.

Diane
Diagnosed in 2013

Diane's Journey With Cancer

  • Diagnosed with Stage IV metastatic lung cancer in 2013
  • Three cycles of chemotherapy
  • Targeted therapy since July 2013

It's overwhelming when the doctor says you have two months. But have faith in the fact that there is hope out there, and do one day at a time.

Don't look down the road too far. Get over your little challenges one thing at a time.

I never challenged my nurse when I was first diagnosed. People tend to do that. But as the process evolved, I realized that my brother and my daughter were not afraid to challenge things. And they were right.

Support groups

The people at the two support groups I belong to now, WhatNext and one specifically for Sloan Kettering, are so positive. They recognize that life sucks sometimes, but offer such unconditional support for each other. It's helpful for you to know that someone else has come through this process or is going through it.

I always start off by telling people that when I was diagnosed, my doctor told me "two months." And here I am more than two years later and I'm still chugging along.

Emily
NED (No evidence of disease) for two years

Emily's Journey With Cancer

  • Diagnosed with Stage IV non-small cell adenocarcinoma in 2012
  • Chemo, extrapleural pneumonectomy (EPP) surgery in February 2013, and post-operative radiation
  • Now, two years NED (no evidence of disease)

We had a little time to process things after my diagnosis. I had two biopsies in the beginning, so that we would have enough tissue samples to send out for genetic testing.

So in the meantime we were able to come to terms with everything. By the time it was time to start chemo I was ready. I wanted the chemotherapy inside of me, I wanted to kill the cancer and attack it, and I felt mentally ready.

Fertility

In the time between diagnosis and starting treatment, we were able to do fertility treatment. I feel it's a very important thing that not a lot of women are told, especially with lung cancer, because the statistics are so low for survival.

But I think with the rise in young lung cancer patients, that's going to be changing and we need to be giving these women advice on preserving any fertility that they might have left. I was fortunate enough to have several people tell me I need to look into this, and I'm thankful we had the time to do it.

Meditation

From the beginning we started with a hypnotist which sounds really kooky. But I adapted that into something that works for me.

Now, every morning after I wake up I do a five-minute meditation, trying to tell my body to do what I want it to do. To kill the cancer cells, to identify them, to never let anything grow. I also spend a few minutes meditating on the family that I want to have and imagining our future children. To me that feels like I am doing something. I still think the mental aspect of that daily meditation, of believing that you can almost effect change in some way, is something that really helped me not only mentally, but physically as well.

Always make sure that you're getting enough information so you feel comfortable. Even if three doctors are telling you something different, at least you know that different options are available, and you can move forward with whatever option feels best to you. I think second and third and sixth opinions are incredibly important, and something that every patient should get.

George
Diagnosed in 2013

George's Journey With Cancer

  • Diagnosed with Stage IV non-small cell lung cancer in 2013
  • Chemotherapy
  • Radiation
  • Targeted therapies for the EGFR mutation

George

You tend to fall back on people that are supposed to know. We have a very skilled set of practitioners in this area.

It's important for people to get themselves educated and to empower themselves. To look for and get credible sources of treatment.

Have an understanding that the treatment of cancer is changing fast and dramatically. There's every reason to be positive that you can live with this disease.

Linda

Find a doctor that has your same philosophy towards treatment. A doctor you feel comfortable with, that you can say pretty much anything to.

Get a second opinion. Nobody can know everything.

Our doctor said, "You're doing fine, you'll be doing fine for as far as I can see out, but if there are things you want to do, do them now." I'd say that's a pretty good piece of advice.

Never go alone to the doctor. Have someone go with you and take notes. We hear totally different things. Prepare questions in advance - don't go in cold. Stay away from the internet. Some of the things you're reading - even if it's just two years old - are no longer applicable. Things are changing so fast so don't overwhelm yourself with everything that's out there.

Janet
Diagnosed in 2011

Janet's Journey With Cancer

  • Diagnosed with Stage IIIa non-small cell adenocarcinoma in 2011, now Stage IV
  • Multiple rounds of chemotherapy
  • Multiple radiation treatments
  • Targeted therapy for ROS1
  • Over two years NED (No evidence of disease)

At the time of diagnosis

I was stunned by my diagnosis. I really didn't know what to do except to follow what my doctor was instructing me to do. I didn't know about finding a second opinion, or that not all hospitals are as familiar with the most current lung cancer treatment options or technologies. My treatment had started before I figured out any of that.

Resources

One of the most useful resources was cancergrace.org, which is a website that covers several cancers, including lung cancer. Doctors - who are lung cancer specialists - blog about lung cancer treatments and new research.

They also participate in a moderated forum where patients can discuss lung cancer topics and ask the doctors questions. It's a good place to learn about your best options for treatment.

Searching Twitter using the hashtags #LCSM (lung cancer social media) or #lungcancer will pull up posts about new research, findings and clinical trials.

There are several forums where patients and caregivers can talk about their lung cancer experience and receive support from others who have been there, such as Smart Patients, Inspire, Lung Cancer Survivors Support Community, LUNGevity.org and the American Lung Association.

Some Facebook groups also provide support, such as Lung Cancer Awareness. In these forums you can talk to other patients - patients who have exactly the same type of lung cancer you have, or are receiving the same type of treatment - and discuss what worked for them and what didn't.

I do suggest caution when joining an online forum. Lung cancer is a very difficult disease, and people can get very emotional. Sometimes you will find posts that are discouraging. Just don't read those - go find ones that address your concerns and provide the support you need. Also, be careful of posting anything online that you might not want others to know. While these forums are intended to be private, you cannot guarantee privacy online.

Lydia
Diagnosed in 2008

Lydia's Journey With Cancer

  • Diagnosed with Stage IV lung cancer in 2008
  • Several treatments of chemotherapy
  • Targeted therapies
  • Multiple treatments of radiation

When I was diagnosed

It was overwhelming for a year. The nurse practitioner told me not to stress. Everything's beyond my control - I'm a controlling person - so I had to quit trying to control. I still find that very hard.

It's very important to talk to people. Your mind can go places you didn't think it could ever go. It gives you some terrible thoughts.

People in the same boat

I like to give them hope. I like to help people, I like to encourage them or pray with them. I think it's very helpful.

Marc
Diagnosed in 2011

Marc's Journey With Cancer

  • Diagnosed with Stage IV non-small cell adenocarcinoma in 2011
  • Multiple chemotherapy treatments
  • Multiple radiation treatments
  • Targeted therapy
  • About to start clinical trial

My diagnosis

To say that my diagnosis was overwhelming is an understatement. I had no clue; I hadn't really been around too many people in my life that were in chemo. One thing I have found in early after my diagnosis is that researching on the internet and looking at statistics is not the best thing to do.

I realized that I'm a person that's going to help make the new statistics. I want to beat those odds, even if it's only by one day to show that it can happen. I want to show that we can live longer than what the statistics say.

I don't believe in looking at the statistics because it can only bring you down.

Finding stuff out

The oncology nurses are wonderful. They were probably more helpful in that aspect than the oncologist because they were the ones that were seeing me every other day.

I'm a huge believer that if you think about it, ask about it; and if you don't like the answer ask it in a different way. If you don't like the answer then tell your doctor you'd like to get another opinion. If they have a problem with that, immediately find a new doctor.

My oncologist is pretty straightforward, and I don't like anybody to pull punches with me. I can handle the truth; it's just learning to deal with the truth and learning how to cope with it and to be able to carry on from that what matters.

Richard
Diagnosed in 2004

Richard's Journey With Cancer

  • Diagnosed with Stage I non-small cell lung cancer in 2004
  • Pneumonectomy in 2004
  • Multiple surgeries and radiation for tumors on brain and lung 2006 – 2014
  • Multiple targeted therapies 2007 - 2014

When I was diagnosed

I didn't know what to make of it. I wasn't angry, I wasn't scared.

It's really important for someone to have an advocate when they go through these situations because mentally I couldn't really do anything. It went in one ear, out the other. It came out of the blue.

If I was giving advice I'd say get on the phone, go online and check out Lung Cancer Alliance, check out United Against Lung Cancer - they're a great source for you.

I am now a Lung Cancer Alliance board member. I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.

Most people think of lung cancer as a death sentence, so to hear someone saying they've survived eleven years, it makes them feel really good.

My recommendation

Be hopeful, take every day at a time. Don't believe everything you read on the internet. Find the doctors and hospitals you trust. Get educated about it to give yourself the best chance.

I see my life as a combination of biology, chemistry, timing and good luck!

Stephanie
Diagnosed in 2012

Stephanie's Journey With Cancer

  • Diagnosed with Stage I adenocarcinoma in 2012
  • Lobectomy in 2012
  • Cancer moved to Stage IIb
  • Four rounds of chemo
  • Cancer moved to Stage IV
  • Targeted therapy since December 2012

It's funny looking back now. I wasn't worried about the poison they were putting into me, I wasn't worried about what it was doing to my body, I was worried about my hair.

I had this long, flowing brown hair and I was thinking about my hair as if it defined me.

After the first chemo it started falling out, so I got my friend to shave it off. It empowered me in some way and I was like, "I've got a pretty cool round head." It didn't bother me a bit.

Then when it started coming back white and curly, I was like, "alright, this is different."

People say they love my hair. I'm like, "Oh, my oncologist did my hair." Or "hair by chemo" or whatever.

I'm not defined by my hair, I'm the same person. It's a new normal.

I used to get real nervous after the scans, oh my gosh.

Worrying doesn't change it, all it does is help break down your immune system and make you stressed. I don't worry anymore.

I want to know the answer as quickly as possible, I want to know everything's good, but I just stay positive and say it's going to be fine. If it's not, we'll deal with it.

Susan
Diagnosed in 2011

Susan's Journey With Cancer

  • Diagnosed with Stage IV lung cancer in 2011
  • Targeted therapy
  • Two clinical trials
  • Chemotherapy
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