Living with cancer is different from living after cancer

This is a topic close to home.

My wife was diagnosed with stage 3C cancer of the ovary a bit over a year ago.  She was a chemotherapy superstar, had few complications, and has been in remission since her treatment finished last October.  Still we know her chances of a cure are fairly low.

Understanding statistics is a mixed blessing.  Even though her chances of this cancer never recurring are pretty low, her chances of living quite some time with cancer if it recurs, while maintaining a reasonably good quality of life are high.

We tend to think of cancer as a disease that you may get, have treatment for, and either be cured of the disease or die from the disease.  In a way that’s correct, but what’s easy to forget is that there are lots of people who get cancer, are treated, don’t get a cure, but for whom treatments  are fairly effective at holding the cancer in some degree of control and they live for long periods of time with cancer.  Living with cancer is different than living after cancer.  This is more common now than ever before, as new medications are developed that can treat cancer and often give short or moderate duration remissions, or simply prevent progression of the cancer.

Several types of cancer are particularly common and also have treatments that while not curative can be effective enough to allow a person to live with their cancer for a long time.  Among others these include breast cancer, ovarian cancer and prostate cancer.  Living with cancer, as differentiated from living after having had cancer, requires rethinking how you approach life.  We tend to think of our lives as having a youth, an early adulthood, the mid-life years, the older active adult years, and old age.  Couples who have good relationships often plan to get old together, and think of a future in terms of decades, rather than in terms of years.  All of the online retirement planners ask you what you want to use as a life expectancy.  I’ve always entered something like 85 years, the actuarially correct answer for a healthy 55 year old.

When a person has a disease that they know they will die from in a few months it requires rethinking how to spend your last days.  This is a type of thinking that although painful and difficult, is a way that we intuitively understand.  What’s really important to me.  I cannot put off for tomorrow what needs to be done today. Short term planning and thinking is something that is conceptually concrete.  Most of us can wrap our brains around this scenario.

When a person has a cancer they have been told cannot be cured, but that they have a good chance of living with for some ill-defined number of years, maybe 2-3, possibly 5-10 or even more, this requires a different type of thinking.  Oh, and by the way add that maybe you’ll be getting some sorts of treatments that will make you sick, or have low blood counts and require you to avoid being around lots of people, but we don’t know when or whether you’ll need these treatments.  Living with both the relative certainty that you have a cancer that is not curable and also many uncertainties (how long you have, how will you tolerate the treatments, how good will your quality of life be, how will your family and loved ones cope) is different and has its own challenges.  Finding the right balance:

  • living in the present vs. planning for the future
  • addressing your feelings and needs to grieve while enjoying every day
  • needing support and help but wanting to be treated normally
  • laughing and crying
  • enjoying the everyday pleasures versus doing the things you’ve always wanted to do but never made time for

Lots more I’m sure I haven’t thought of yet.

I don’t profess to be an expert on how to live this life. under these circumstances.  I expect I’ll learn more about it over the next few years.  I pray that I’ll be up to whatever decisions come my way.

Edward Pullen is a family physician who blogs at DrPullen.com.

Submit a guest post and be heard.

Comments are moderated before they are published. Please read the comment policy.

  • http://secondbasedispatch.com Jackie Fox

    What an awesome, beautifully written post. You summed up this situation so perfectly. I have a dear friend with stage IV breast cancer and so far her treatment is holding the line and she has beat the 2 year average they told her about. My fervent wish for her and your wife is that this has become a chronic disease. My very best wishes to you and your wife.

  • Pam Jones

    Thank you for sharing….this is a tremendous help to those with cancer and those of us loving them through it; both situations presenting unique challenges

  • Suzanne

    Thank you for putting into words what I live with every day. I also have OvCa 3C/grade 3. It’s very difficult for me to get across to people that I’m living with this disease, not dying with it. They mean well, but are often suspicious & confused that I don’t seem to fit their pre-conceived ideas of what a cancer patient should look & act like. I just smile & thank the Lord for allowing me to live in a time & place where I can have hope.

  • Lady Patient

    Thank you for this post bringing attention to a cancer that doesn’t have much public exposure.

    I was diagnosed with stage 3C ovarian cancer exactly 7 years ago this month. I had one recurrence at the half way mark, and am currently in a 2nd remission longer than the first. My QOF is excellent, but am very aware of my good fortune to have insurance, live 20 minutes away from a comprehensive cancer center, and the good sense to follow my caregivers’ plan of attack to keep me around as long as possible.

    I wish your wife well.

  • Jeanja

    H. Gilbert Welch has reported on many studies that show a substantial reservoir of undetected cancer, especially in glands, to the point where he concludes, “All of us, at some point in our life, could probably be said to have cancer.” So I suspect that eventually, instead of thinking of a binary distinction of having cancer vs. not having cancer, we’ll starting thinking in terms of how much cancer each of us lives with, and how well our bodies are holding off the progression of our cancers. I hope your wife holds off hers for a good, long time!

  • http://youfightingcancer.blogspot.com/ Randy

    So many of your words are so true. I have stage IV colon cancer and have been fighting for almost 3 years now. You’re attitude and thoughts will set you path to your quality of life.
    My mom has stage III ovarian cancer as of to date is holding her own after a year.
    You are correct about treatments, sickness, stress (not just on you, but you entire support team), and the “averages”. I refuse to be a “average” number on the charts. You Keep FIGHTING CANCER and I will keep reading your posts. God’s speed to ENJOY THE DAY!

  • http://tbtam.com Peggy Polaneczky

    Watching my sister go through similar experiences with her cancer, I know just what you are talking about. One day she summed it up by saying “I vacillate between planning my funeral and redecorating my bedroom.”

    I treasure every day she is still with us.

  • Elaine

    Terrific insight in describing the distinction. I live with Ovca stage 3c. My remission was only six months. No treatment yet. Lots of scans and blood tests,but I am living with it . Yes, my horizon is in sight, but I live between appointments, and do not know when I will be back in treatment again. My outlook has changed. I do what i want without excuse or guilt. Living with it is an art with emotional rollercoasters. But I am alive and feel almost fine most of the time. I hope research and trials will be there when I am back in treatment.

  • Jon

    Hi

    My wife also has Ovarian Cancer – diagnosed in 2009. She is now having her second lot of Chemotherapy. This article sums up a great deal about how we live our lives and how we try to exist. We have 2 young children and my wife is constantly confronted with the fear of leaving them before they are grown. She visualises the future and how life will be with our growing and grown family. This approach gives her the strength to continue and to make sure that she builds her ability to see this as a long term fight against a chronic disease.

    Sharing these experiences is key for all of us in getting a sustainable quality of life.

  • http://www.carcinista.com The Carcinista

    Thanks for this great post. I’ve been living with Stage IIIc (now Stage IV) OVCA for four-and-a-half years, and I’m going to break that damn five-year barrier come hell or high water. My lung metastases are threatening to do me in before next May, but thanks to great research I’m bouncing from clinical trial to clinical trial.

    I love what Peggy said about bouncing between planning the funeral and redecorating the bedroom – I’m planning vacation for next spring but making lists for my husband just in case. Living with chronic cancer gives you a whole new perspective on what is most important and deserves your focus. I’ve certainly cut back on extracurricular activities, and am focusing on family and building memories. (Frankly, I think the world would be a better place if we all did.)

    Best wishes to your wife for continued NED –

    Sarah

  • http://drpullen.com ed pullen

    Thanks to all of you who left such complimentary and encouraging comments. I hesitated to let KevinMD share this post, as it started on my personal blog for friends and family. It was well received so that after discussing it with Kay decided to post it to my medical blog. I didn’t suspect that Dr. Pho would pick this for his post to KevinMD this month, but when he did I was anxious. Was this sharing too much with too many. Your encouraging response warms my heart and it does help to feel like we’re not alone.

  • http://katrhianna.blogspot.com Katherine Tracy

    I was diagnosed with Stage 4 Ovarian Cancer 5/31/2010. I just completed my first go around of 6 IVs and 1 IP. I go for my blood work (CA 125) and CT Scan in the last week of Dec. I meet with my doctor the first week of January. I should know something then. I’m learning so much about cancer these days, and I will fight this damn disease with all my heart. I am still working full time, but teach mainly online courses now. Thanks so much for your articles.You definitely tell it like it is. Well wishes to your wife. Kat

  • Helen Stands For Hope

    I am a 23 year survivor of stage IIIc ovarian cancer. I had two surgeries and two and a half years of chemotherapy. A person’s life turns upside down over night. What Dr. Pullen said is true. We decide what is really important. We don’t take anything for granted. We appreciate the little things in life such as looking out into my backyard from my own bed and not one in the hospital. I needed to pack everything in. You don’t say I will do this, you do it now while you can. When I thought my life was going to be cut short, we took many trips (even when I wasn’t feeling well). I bought myself nice presents. I also learned to not think nice things about other people but to let them know. I depended on those closest to me to reassuring me when I worried. On my first birthday after diagnosis at age 41, I asked my brother, an MD how old would I live to be? He said I would live to be 95. I thought, he’s a doctor, he should know. He told me what I wanted to hear. Maybe what my brother told me will come true. I am now 65 and I’ve been cancer free for 16 plus years. No one knows the future so we might as well think the best.

  • Finn

    Thanks for sharing this. I’ve been lucky so far–stage 2C, grade 3, diagnosed 6 years ago, in remission but knowing it could come back. The comment above about vacillating between redecorating and planning the funeral describes exactly how I felt from diagnosis through much of treatment. I just had to keep reminding myself that none of us knows how long we’ll live; those of us diagnosed with cancer just have that fact rubbed in our faces so we can no longer ignore it.

    May you all dance with NED for many years to come.

  • http://www.myheartsisters.org Carolyn Thomas

    After spending the past decade working in hospice/palliative care, I have learned many important things from our patients.

    First, the only difference between these patients and me (and you, and you, and you, too) is that hospice patients have some kind of ‘heads up’ awareness of where and how they are going to die.

    But the rest of us could go first! We could get hit by a bus tomorrow on the way to work, yet most people, unless they are diagnosed with a progressive and chronic disease, rarely think about this reality and the ultimate fragility and complete unreliability of human life until they are suddenly “fighting” cancer or other life-threatening illness.

    Let’s face it, folks, none of us are getting out of here alive. If we live long enough, we will get a number of cancers, guaranteed. Our risks of cardiovascular disease, diabetes, and other damaging conditions increases with every day we are alive. Generations ago, our ancestors simply did not live long enough to be diagnosed with the range of deadly diseases we now expect to be cured from.

    Since my own heart attack, I’ve learned that the biggest risk factor for having a heart attack is having had one already. As Dr. Pullen says: “I cannot put off for tomorrow what needs to be done today.”

    Trouble is, every one of us should be doing the same, diagnosed or not.