My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Saturday, December 26, 2009

Outcomes and Expectations

While I don't believe "thinking positive" is vital to a good cancer outcome, I do believe that negative assumptions affect cancer treatment outcomes.

I know of many who assume prior to cancer therapy that their normal lives will be over while on chemo...they will feel ill, be nauseated, will vomit often, not be able to eat and will be fatigued while on chemo. And bald.

Many also assume their recovery from surgery will be extensive, they will be out of commission for months following surgical intervention. They assume they will have side effects from radiation therapy.

I wonder sometimes if those assumptions become a self-fulfilling prophecy?

I personally had a very major cancer surgery. Prior to surgery I was told I would be in ICU post-op and would be hospitalized for at least 12 days. But I didn't go to ICU post-op as I did well after surgery. I was discharged in 6 days, not 12. I walked 3 miles 8 days after my surgery. I was driving my car in 2 weeks and back to my normal life in three weeks.

I started chemotherapy with no pre-conceived notions of my life being altered, and it wasn't. I was nauseated only once during my 7 months of chemotherapy, ate well, gained weight and never vomited. I didn't lose my hair. I drove myself to and from chemo treatments and ran errands on my way home from chemo. I did athletic training while on chemo. Six months after I completed chemo I rode my bicycle 100 miles in one day (I trained for that event while on chemo). I lived a normal life...the few chemo side effects I had were cured with medication once I brought them to the attention of my oncologist. I felt a bit washed out on chemo days, but hey, I'd had days where I felt a bit washed out prior to chemo. They've come a long way with chemo, nowadays drugs are given prior to chemo treatments to prevent side-effects.

I had a friend with my same cancer who was in her 70s. She was also discharged from the hospital following her extensive surgery in a week. She was soon after surgery kayaking and hiking and doing the things she loved. My 79 year old aunt is experiencing a breast cancer recurrence, but is living a normal and full life while on chemo, following 39 uneventful radiation treatments.

I know of others who after the same surgery I had spend months recovering. Who don't resume their lives and interests for the better part of a year.

And I wonder sometimes if expectations play a part in outcomes. If we expect to be ill and disabled, maybe we will be. If we expect prolonged recovery, maybe it will become our reality. It's not so much that we need to think positive when we enter cancer treatment, maybe it's more that we go into it open-minded? Maybe our attitude in part determines whether we will be victims or victors?

3 comments:

Alice R. said...

Carolyn,

I have to agree that expectations play a role in recovery. Unfortunately, it is not the only factor.

Following my first surgery, when my cancer was discovered, I was back to full activity in no time. My second surgery, with a “worst case scenario” hospitalization of 7-10 days was riddled with unexpected complications, all the while with me asking when I’d be discharged. However, intestinal ileus won, and I was hospitalized for 28 days.

I went to IP chemo with no expectations other than some bloating – I had unforeseen extreme pain and complications. The doctors discontinued after 5 of a planned 8 cycles, with the hope that systemic chemo would be easier for me.

I went into systemic chemo fearful, but reassured that the side effects could be controlled. My reactions to the Oxaliplatin were rare ones that I hadn’t been told about. My hand-foot from the 5FU left me unable to walk. A few other unexpected side effects convinced me to discontinue after 7 of a planned 12 cycles.

Throughout, people were constantly remarking on how good my outlook was; amazed that I remained so up-beat. I now feel pretty good overall, and have pushed my cancer to the background. I feel confident that if my attitude had not been so good, the problems would have been worse, would have pushed me down much lower. However, with expectations that all was going to be manageable, I was wrong.

I was a victim of bad luck in terms of rare complications. I am a victor in that cancer is not controlling my life, that I have a “normal” life back. Cancer is now in the background.

People need to understand that your outlook can help, but it won’t avoid inevitable problems. I resent the people who tell me that everything will be okay because I have the right attitude.

A very dear friend of mine with an extraordinary outlook on life died of cancer. She stayed hopeful and upbeat until the end, was devoutly religious, and did “all the right things”. Despite her emotional strength, her body let her down. She could not fight the cancer.

Yes, go into this with the attitude that you can beat it. But also know that the enemy is strong. And not winning does not mean that you have failed.

Carolyn Langlie-Lesnik RN BSN said...

Hi Alice,

I'm sorry you went through so much. I know some with upbeat attitudes still have a difficult time, and some have problems in spite of positive expectations.

And I truly don't believe an "I'll beat this attitude", religious support and doing "all of the right things" guarantee cancer survival, I know too many who have done all of those things and not survived. Cancer is a large and strong enemy.

But there are also some who have "anticipitory nausea and vomiting" before even receiving chemo as they are so convinced beforehand they will have those side effects. I think positive expectations in recovery, while not the only factor, are still an important factor. We at least have to go into it with an open mind!

Carolyn Langlie-Lesnik RN BSN said...

Alice, wanted to add that I loved what you said..."And not winning does not mean that you have failed." You are so right.