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Living with Cancer

I was on the American Cancer Society’s Website, looking for information about controlling weight gain occurring during cancer treatment. I didn’t find much about the problem occurring during treatment, only for gains that happen after treatment ends. While I was on their site, though, I ran across the following quote that gave me the idea for this blog:

Living with cancer is different than living after cancer.

The fear of recurrence is always there

Such a simple sentence, but it contains so much truth. I know quite a few lung cancer survivors who are in fact living life after cancer. They have no evidence of disease (NED). A lot of them have enjoyed status for years.

These survivors still have the worry that their cancer will return. Once we have been touched by cancer, we never lose the fear of recurrence. But, in many ways, they are able to resume their lives in ways that those of us living with cancer cannot.

Building my life around treatment

Like many of my friends who also have lung cancer, I have knowingly been living with cancer since October 2012. There has not been a time when I haven’t reported to my cancer clinic for treatments.

Having to go regularly for treatments interferes with life in a lot of ways. For over four years, I gave up one day every two weeks to go to the cancer clinic for treatments. It is an hour-long drive each direction in good traffic to get to the clinic. Blood test results took at least an hour to get and it took at least another 30 minutes for the doctor visit. The pharmacy took at least another hour before sending my cancer drug. Infusion took yet another hour. Even if everything ran smoothly, there was little time left in the day to do anything else besides getting the treatment that was keeping me alive.

When my husband and I discussed moving to a more remote location – I have always dreamed of living in the country with a bit of acreage – or going on an extended vacation, we were always thwarted by the fact that we needed to be in close proximity to my treatment center. And, it took some real planning to fit vacations within the two-week window between treatments.

As close as I’ll get to treatment freedom

A year ago, I had to quit my clinical trial due to a tumor that outsmarted the trial drug. I miss being in the trial in many ways, but there are a few benefits, too. For instance, I was able to begin going for treatments only once a month. And, the drug protocol changed so it is infused over 30 minutes instead of an hour. My doctor only needs to see me at every other visit. We also extended the time between scans to four months, instead of three.

This is probably as free as I will ever be for the rest of my life from going for treatments. The drug is holding my tumors mostly stable, but they aren’t going away.

Finding a better balance

Recently, I told my oncologist that I was thinking about taking a break from treatments. I have no good reason for it except for the fact that I am simply tired of the regular interference of appointments in my life. Not surprisingly, he was not enthusiastic about the idea. And, I’m not enough of a gambler to believe that my tumors will remain stable without the monthly immunotherapy infusion.

So, I’ll keep living with cancer. And, in truth, I will be glad for it. It certainly beats the alternative of not living at all.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • edydede
    5 months ago

    True that! Basically in the same boat, but I have a rare form of Cancer. It’s called Small Cell Lung Cancer. I’m in the 8-12% of people that get this type of Cancer, therefore there’s no treatments for me. I am also dealing with side effects that have not left my body and it’s been 2 1/2 years that I’m in remission.
    I continue to look for cures or treatments with what I was left with.
    Because I have this type of Cancer and in such a small percentage group there is no money being spent on research.

  • Margot moderator
    5 months ago

    Thinking of you @edydede – there are a few treatments for small cell available currently – have you discussed treatment options with your doctor or care team? And have you discussed your side effects with them? They or palliative care (https://lungcancer.net/living/palliative-care-should-you-care/) may be able to help manage side effects! Keep us updated. And there is current research being done on more small cell treatments as well! Recently, the FDA has approved Opdivo and Keytruda for small cell – https://lungcancer.net/news/fda-approves-opdivo-sclc/ and https://lungcancer.net/news/keytruda-metastatic-sclc/ – it’s a start!

    Best,
    Margot, LungCancer.net Team

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