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How it starts for me

Jean-Luc's picture

I just learned yesterday that I have lung cancer. We don't know yet what stage, or if there are cancerous cells in other places than my left lung and 11th left rib, with a cancerous mass on the rib (inside, on my back, left of the spine, roughly an oval 5cm by 3.5 cm - 2 inches by 1½), and a pleural effusion.

I am 44 years old, stopped smoking 4 ½ years ago, and thought I was in pretty good shape, all things considered.

Back in October, I got (what I thought was) back pain, and got severely constipated, to the point where I could not defecate at all for 3 entire weeks (I had no idea this was even possible, and survive it, but I did).

Then I still had so much pain that I could not function well and could not sit, lie down, or stand for much more than minutes at a time, with very short and bad sleep. My back is all bent sideways because of my body trying to favor the left side.

All my vitals were perfect, doctors were puzzled and did an upper endoscopy (thinking of an ulcer) which showed nothing.
My first trip to the ER, they turned me away because my vitals were perfect (no matter I was in such pain that it really showed in my face and the way I moved).

Then our family doctor and husband (also a family doctor) ordered a CAT scan, and upon looking at the results phoned us at home on a Saturday night and suggested strongly that we go again to the emergency to get admitted, as it looked to them like cancer was very likely.

It also showed a pleural effusion (liquid forming under the lung when it tries to protect itself).

So the ER admitted me to the hospital, I stayed four days (for pain management and tests) and just before the end of the day on December 31st they got the results of the biopsy, and the preliminary verdict (that is how it felt) was that I definitely had lung cancer, with also a rib involved. No wonder I had so much pain!

In a bit more than a month, I lost 30 pounds, going from 175 to 145 pounds, as between the severe constipation and the pain from the pleural effusion I could not eat much or at all (still issues with that, but doing better).

So on Monday I have an appointment with our oncologist (who is a no nonsense, right to the facts kind of doctor) to learn more and to schedule the PET scan.

At first I was afraid, I was petrified... ;)

At first I could not believe it (of course), and felt considerably down (especially as just that morning I felt considerably better than I had in weeks), but since then my wife and I have gone a long way (or so we feel) in the acceptance and getting ready to fight the cancer processes, and came to the realization that even though this is devastating and the path ahead will be rough, this is an opportunity for much self awareness and growth, and many good things to experience and learn.

So there you have it, my story so far.



ejourneys's picture

My condolences -- welcome to the club no one wants to join.

Whatever you and your wife experience, know that you are not alone.  Online communities (and a local support group) have helped me tremendously, so I offer the sites below -- for potential use down the road if it all seems overwhelming right now.  The day I was diagnosed my life went into overdrive because the weeks just after diagnosis moved very fast.  I did what research I could to help with my decision-making and to prepare for surgery/recovery and then chemo and radiation.  The days eventually slowed down (chemo saw to that).  What helped (and continues to help) me was/is living in the moment and taking one day at a time.

I am active on http://www.WhatNext.com, which is an ACS-sponsored community.  Much good info and sharing there.  When I was diagnosed I had called the ACS resource center, which pointed me to excellent info.  Twitter has chats at lung cancer social media #lcsm, http://lcsmchat.com/ (I'm on #bcsm for breast cancer) -- the hashtag is active 24/7 and often posts research links.  Other good info sites include the American Society of Clinical Oncology (http://www.asco.org/) and the National Cancer Institute (http://www.cancer.gov/), in addition to the ACS (http://www.cancer.org/).

I am also a caregiver and have found these sites helpful: http://www.caregiving.com/ (very active grassroots network; holds #carechat on Twitter), http://www.thecaregiverspace.org/ (also grassroots); http://caregiver.com/ (more corporate than the other two but also very helpful; holds conferences free to family caregivers).

Palliative care begins from the day of diagnosis.  All oncologists are trained in some palliative care, but for severe pain issues a palliative oncologist may be helpful.

I wish you and your wife all the best and am keeping my fingers crossed for you both.

Jean-Luc's picture

Thank you very much!

My wife and I have read your answer and really appreciate all these ideas and resources.
I am sure we will use them over next days, weeks and months. :)

Thinking of you and your wife today, Jean-Luc.  Kathy

Jean-Luc's picture

Thank you, Kathy! :)

My wife and I appreciate it!

We hope your day was great. :)

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