Numbers Game

Today I am celebrating a very special anniversary.  Five years ago, on April 8th, 2005, I was diagnosed with lung cancer.  Statistically speaking, the fact that I’m still at this party is a personal victory.  As many of you know, the overall five year survival statistic for lung cancer is 15%.  On a sober note, that means that out of one hundred people diagnosed with lung cancer at the same time I was, only fifteen are still alive.

The old numbers game, and when you’re talking lung cancer, those numbers are not favorable.

In my case, they have gotten less favorable as time has gone on.  I am looking at a letter dated August 29th, 2005.  It is my oncologist’s (at that time, Dr. Tom Lynch) response to my statistical prognosis and the potential benefit of adjuvant chemotherapy.  This is what he had to say:

“Some statistics will say that the survival is 60% and others 70% (both are without chemo) …I believe that Linnea’s characteristics are more consistent with the better prognostic group…If one looks at older data the benefit [from chemo] is 5%.  However in the most recent CALGB and NCI Canada data that benefit was either 11% or 13%.  Thus if you add 13% (CALGB) to 70% you get 83%…”

So the most positive spin possible put my initial five year survival statistics at 83%.  These somewhat arbitrary and very slippery numbers were arrived at by taking into account my stage, treatment options and other variables such as my non-smoking status, age, sex and relative health.

Roman numeral V and V for victory

The final four factors were all very much in my favor, as was the fact that surgery was possible. Tom had concluded the letter by saying…”Most important is to know that from your perspective the percentages don’t really matter. Cure is an all or nothing phenomena and I remain confident that we have done everything we can to get the best possible outcome for Linnea and that she has a very, very strong chance of cure.”  Well, that cure would prove elusive, and as I learned more, I realized that many of the characteristics of my particular cancer were rather poor prognosticators.

Let me break it down for you.  I was diagnosed with NSCLC, or non small cell lung cancer.  Pathologically I had an adenocarcinoma, with a BAC, or bronchioaveolar, subtype.  BAC can be quite indolent, or slow growing, and survival statistics are often higher (as high as 100% for tumors <3cm).  My stage was IB, with T2 (tumor size >3cm) and N0 (no lymph node involvement) classification. The fact that I was a stage I was highly encouraging, and meant that a surgical cure was possible. However, the size of my tumor, which was 5cm, meant that I was a stage IB, rather than a IA, and statistically speaking, that meant perhaps a 20% decrease in survival.  In addition, my tumor was located in a lower lobe on the left side (a poor prognosticator) and was mucinous (again, a poor prognosticator).

From a treatment perspective, a lower left lobectomy followed by adjuvant chemotherapy with cisplatin and Taxotere would give me a shot at that 83% survival statistic to which my oncologist referred.

However, despite surgery, and adjuvant chemo, my cancer spread (likely due in part to both my mucinous BAC pathology and my yet undiscovered positive ALK mutation status–now both recognized as indicators that traditional platinum based chemos may be ineffective).

So, long (and getting longer) story short, I now have recurrent/advanced/metatastic/terminal lung cancer.  That original 83% has shrunk to a dismal 4% five year survival statistic.  But, against the odds and thanks to an amazing combination of science/luck/persistence, I’m still here.

NED, or No Evidence of Disease, is a coveted designation in cancer.  I was never able to say I was NED.  I would like to propose a new acronym, NDY, or Not Dead Yet.  Take that, cancer!

17 responses to “Numbers Game

  1. Dear Linnea,
    congratulations!
    I love your new acronym, NDY! It sure is a lot more durable than NED. And now when you’ve reached the 5-year-goal, the rest is an unlimited victory.
    I’m making sure to follow your path.
    Love, Anja

  2. YOU GO GIRL! Time to Celebrate! Congrats on the 5 year mark and keep painting.

    Linnea (New York)

  3. A high Five for you. Vive in French is Viva in Spanish, Alive in English!
    I like your analogy of Roman V (5) for Victory over cancer.
    Like Veni, Vidi, Vici: I came, I saw, I conquered. (The laconic despatch in which roman Julius Ceasar announced to the Senate his Victory over Pharnaces.)
    Is a joint Victory, my 5 years anniversary coming in VI months.
    So the most positive spin possible is unknown but much, much better than 4%.
    Surviving against the odds, we are the best. Believe it!
    The cup is more than half full, many more Victories to come.
    New statistics for our stages shows only 41% dead of NSCLC after 9 years, average group age 70. Will arrive a better numbers taking into account my stage II, non-smoker, age 71, sex, latin male just imagine, never with relative.

    NDY, or Never Die Young. Great picture.
    Take that, cancer!

    • Guillermo, good words, these V’s and these L’s. Veni, Vide, Vici, Vive, Live, Love, Laugh…I’m sure your profile will change the face of lung cancer forever–keep it up. We need some people bucking the trends. Linnea

  4. You are doing great, of course you can not influence it all on yourself, the five years target, but your mind and spirit ar truly an inspiration. I still hope to follow you for a long time 🙂 SO that both you and I will be a miracle in the Lung Cancer world.
    I will use your new term too; NDY! Great slogan !

    Love Caroline

  5. Caroline, you better follow, because I will be waiting for you. I like Guillermo’s take on NDY as well, Never Die Young. So here’s to us, NDY! Love, Linnea

  6. Five years is a blessing! I have recently lost 2 friends to lung cancer. One survived 2 months, and the other about 2 years. My mom is at her 7 year mark with lung cancer and 3 recurrences. I say you relish that you are here at 5 years (absolutely amazing), and enjoy all the moments we all have! Your trip to the West Coast looked fabulous. Keep going Linnea!! You’re a spunky cookie.

    • Suzy, spunky cookie, I like that. That is great that your mom has made 7 years. I ‘collect’ those outlier numbers as if they were talismans…best to you and your mom, please pass on my congratulations. Linnea

  7. Congratulations, Linnea!! You help to inspire me. I was a bit disappointed at not having had the ALK mutation. I was so hoping for a positive response to send this cancer in the opposite direction. I just received a call from Alice Shaw that she sent my samples back for more testing. They came back positive for a HER2 mutation. My Dartmouth onc. doesn’t see anything in it but I am throwing my apples into Dr. Shaw’s cart. She says there is a Phase 1 trial for HER2 and lung cancer that is showing some positive outcomes. I see her on Friday. Wish me luck and all else it takes.

    Your writing is beautiful. I have been enjoying the birds and the peepers but I don’t put the words down. You have a special way. Thank you for sticking to your writing. I’m sure it helps us all love our lives more.

    • Sherri, I really can’t say enough good things about Dr. Shaw. Not only is she wicked smart, she really cares so very much about each and every person who contacts her. I do wish you luck, and courage, and resilience. It sounds like a good plan. I would like it if you kept me posted as to your progress. Take care, Linnea

  8. Hi Linnea –

    I have a similar situation, no Bac, but your last post is very similar to what I’ve been through. My blog is attached. Can you recommend how I could get checked for the ALK mutation status? That’s one thing I haven’t had checked.

    Keep going Linnea, your an inspiration. Love your blog.

    Janice

    • Janice, I checked out your blog; you’ve been at this a long time and your writing is lovely (the image of the dandelions in the grass gave me chills). Testing for ALK is done via biopsy. If you have material banked from your original tumor, it can generally be used. Not every place is testing for mutations yet, but if they are, they would generally test your sample for EGFR first, and if that is negative, check for K-RAS or ALK.
      I am working on a post that will have more information about ALK, but you can find out some of what I will be detailing if you go to cancergrace.org and check out the podcast by Dr. Camidge on ALK–very informative.
      Best of luck and thanks for commenting and telling me about your blog. I will be checking in and hope you do as well. Linnea

  9. A lovely spring day. I observe two pretty women in their thirties, one talks and plays happily with her baby. A 21 year old tattooed boy arrives with his skateboard.
    Something is wrong with this picture.
    We are 4 people waiting for CT scans in a cancer center. They are too young for that.
    During the young mother turn, her 79 year old father olds the baby and tells me that he lost his wife at 70 to breast cancer. His daughter, university graduated, is “cancer free” after intensive chemotherapy, but on dialysis because her body is rejecting two kidney replacements. I am very impress with women warriors like you, Janice and her. Facing dead she choose to give life. If life gives you dandelions, make a salad.
    http://www.susunweed.com/herbal_ezine/May08/anti-cancer.htm
    We are all in a short journey, enjoy it as much as you can.
    Make time to smell the flowers, I think I saw the picture of cancer in a crater form.
    http://www.dailymail.co.uk/sciencetech/article-1266403/Iceland-volcano-space-The-dramatic-ash-plume-engulfing-Britain-seen-above.html

    I like Janice’s blog too, style, expression of feelings, cancer hits very gifted women.
    I was surprised at the similarities with my own journey that she seems to describe.
    We found lung cancer 5 years ago on a trip to Europe. Finders keepers!
    We got VAT surgery removing top right lobe.
    We got sicker with carboplatin and taxol chemotherapy and lost our hair.
    We did better with Alimta but suffered and got constipated with dexamethadone.
    We love to travel, our cancer seeds too. Mine to a rib and other lung, Janice’s to her beautiful brain. I went with my wife to Europe for a wedding 5 years ago, the bride, young and pretty, had a brain tumor removed recently.
    Janice traveled in California and loves and lived in Spain. Me too, plus Spanish parents.
    Like her I visited Seville, in 1951 and in 2007, in the University found out that was the large ex tobacco factory mentioned in Carmen.
    Smoke is the real Montezuma’s revenge
    http://spainforvisitors.com/module-pagesetter-viewpub-tid-6-pid-6-meid-955.htm
    Now she is taking the drug Temodar. Something is wrong. “Temo dar” in Spanish is “Afraid to give”. Janice inspires and gives to us in her blog.
    A non believer I appreciated when being only two in a sailboat leaving from Turks and Caicos to Dominic Republic an beyond a young fisherman said “Vaya con Dios”.

  10. Because of this strong but silent bond that I have with others similarly afflicted, I feel that your triumph is my triumph as well. Keep on keepin’ on for many more years! I have 6 more months until my 5 year mark. I hope to share the same jubilation with you.

    • Evie, six months, you’re almost there! I believe my friend Guillermo hits the five in six as well; we’ll have to throw a party. Linnea

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