The side effects of cancer treatment can become permanent glitches

Sara was treated for multiple myeloma in the mid-90s and had a stem cell transplant seven years ago. When I asked her husband how she was doing, he said, “Pretty well … just the gift of a little edema in one arm and some neuropathy in her feet.”

On one hand you think, “Hey! That’s great! Those little gifts — those side effects — are a small price to pay.”

On the other hand, seven years of edema and neuropathy for an active hiking enthusiast is nothing to sneeze at.

The side effects of cancer treatment sometimes fade but can become permanent glitches — disturbing symptoms whose impact we try to mitigate and whose presence we attempt to accommodate.

If you know someone who was treated for cancer in the 70s and 80s, you might be aware of the effects of early, very aggressive treatments that have emerged over time: the stooped shoulders, weak neck muscles, heart ailments, swallowing difficulties and secondary cancers that accrue to what is now known to be excessive radiation treatment. You can also imagine that the long-term risks of many of today’s newest cancer treatments are similarly unknown.

As evidence builds from the long-term follow-up of people treated in clinical trials in the latter part of the last century, knowledge about the risks of those out-moded treatments has become more systematized.

“Oh, this is classic in Hodgkin’s patients treated in those days,” remarked my rehabilitation physician when examining my weakening back muscles. “We see it starting anywhere after 20 years post-radiation treatment.”

You know the evidence is gathering about your disease treatment when its late effect profile includes “classics.” You also begin to hope that new, more effective and less risky treatment approaches are being developed.

For a long time, I believed that cancer and the effects of its treatment were containable, that the tincture of time would minimize their impact on the length and quality of my life. I thought that survivorship care consisted of regular testing to see whether I had a recurrence or a new primary cancer. My imagination accorded little space for compromises in physical, cognitive or social functioning that become more pronounced over time or that burst into existence as I age due to either my cancer diagnoses or their treatment.

I don’t wish that I had known about the full exciting range of diseases, disorders and disabilities for which I am now at risk. It wouldn’t have mattered anyway: denial is my favorite defense and I no doubt would have deployed it efficiently.

I do wish, however, that I had had a more fulsome orientation to the trajectory and value of survivorship care. I think it would have been helpful to understand that the symptoms and late effects for many cancer patients often, rather than fading to nothing, accumulate over time. It is not only the fact that I have had cancer but the particulars of my treatment that increase my risk. If I understood this, I would have placed greater value in working with clinicians who view new symptoms and conditions through the lens of cancer survivorship, rather than independently occurring phenomenon.

Of course, not every person who has been treated for cancer would find this orientation worthwhile. Many people are treated for early-stage cancers — some of which may soon not even be identified as cancer – and they will live out my naïve idea of how this should work … the tincture of time, the fading of the effects of surgery and minimal chemotherapy or radiation. For them — if they and their doctors can agree who they are — survivorship care is a matter of vigilance for five years post-treatment and then fading back into the risk profile of the normal population.

For the rest of us, from childhood survivors on up, settling into the notion that cancer diagnosis and treatment are “gifts that keeps on giving” requires a long-term commitment by both the individual and the survivorship clinician to identify the next manifestation of that gift and to seek innovative approaches to ensuring that it detracts as little as possible from the quality and length of our lives.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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  • meyati

    Very insightful. Cancer can do so many things, but one of the problems is when it cascades over your doctors. I did fine during and after radiation, in spite of my hypothyroid being out of range. Then I really began to feel horrible, fatigued, throat hurt, sleeping 12 hours a day or more. I had nose mouth radiation. Normally that causes a dry mouth, which causes a variety of throat, mouth, and teeth problems. I told the doctor that it wasn’t from radiation/cancer, and gave the reasons my radiologist gave me. Number one-My mouth just not dry in any form.
    I was told that “I do not do cancer or radiation.” and he walked off. When I contacted him about this, he finally relented. I had a screen and my thyroid increased. I’m now in range and my skin isn’t like a shedding snake, but that throat, the sweats, etc. His next message was that I had chronic and stable conditions- live with it.
    I found an 80 year-old Urgent Care doctor that practices MED 101- Sore Throat Complaint = STREP TEST. Acute strep-and he prescribed the proper antibiotics. I changed doctors yesterday. I hope this new one will treat my sprained ankles and sore throats. I know my old doctor treated diabetics, what makes my non-cancer problems any different than a diabetic with the flu or something that’s not related to diabetes?
    Ya, I’ll probably have something develop from the cancer and radiation, but that’s no reason to give up on me before that happens.

  • Lisa

    Even surgery and minimal chemo therapy can have lasting side effects. I was diagnosed with early stage breast cancer 5 years ago. I have lymphedema, which as my pcp says, doesn’t go away. I have had four cases of cellulitis due to the lymphedema. I developed arthritis, cataracts and trigger thumbs while taking aromatase inhibitors. All of these are normal side effects of aging, but the aromatase inhibitors hastened the development of these conditions.

    I think we all be better off if there was less toxic treatment and if doctors were aware of the side effects of the treatments and drugs they prescribe.

    • SarahJ89

      Or if they were honest about the side effects they know about.

      • Lisa

        If I complained about a side effect, my first oncologist would respond by saying oh that is not a listed side effect of (insert what ever drug I was taking at the time). I always suspected he knew my complaints were common ones, he just wanted me to be complaint and take the medication.

    • meyati

      I absolutely love my radiologist. He was perfectly honest in what “could” happen. He says that cancer is so brutal that often the only way it can be fought is with equal brutality. I’m sort of put out by ACS because of misinformation and the lack of information, I was ready to shave my head, but my sweetie stopped me, as you only lose hair in the radiation area. So I have half of a mustachio. He was honest that I’d have burns and they’d take a long time to heal. That I could have throat and mouth problems from the saliva glands being destroyed, Because of how the biopsies took out part of my lip, the regular teeth guards didn’t fit, and he made me a special one. He told me that my nose and lip would probably come out very burnt and crispy. Sometimes they had to be surgically removed, but the surgeons wanted to remove that and my eye, along with the bone anyway. He bluntly addressed issues that ACS doesn’t address in their brochures on mouth problems.

      Part of this is when an oncologist talks, does the patient continue looking at the doctor without crying or does the patient start withdrawing in different ways. The head oncologist was fired-the administration and he didn’t cooperate for awhile. Every 3 days I was in the office, I tried to be polite, but I cursed, screamed, kicked and pounded the desk. I called and Emailed. I called the headquarters in another state multiple times. He lied- I know he lied, because Johnny Depp is the only person that looks exotic with an eye patch. Come on-a 70 year-old woman looking exotic with an eye patch? Then I took a biker grandson up for the second visit to scare answers out of him, like how long would I be without a face? My biker grandson talked to some professors, and they said it probably would be a series of surgeries. My grandson asked that, and the sadist affirmed that-then it would take a year after the last surgery-he never answered anything else.

      They are aware, but they become indifferent to it. It’s like a concentration camp prisoner being happy, because they found a small scrap of a potato peel in their so-called soup.

      My advice is to take a mean looking person with you, even if you have to go to a biker bar and hire a nephew or cousin.

      • Lisa

        Doctor’s who communicate with you are wonderful. I am glad your radiation oncologist was honest with you.

  • KJK

    This was very interesting. As a pharmacist we are taught to weigh the risk vs the benefit to the patients before recomending a treatment modality. But what I would consider a small risk vs the much seen benefit, a patient may consider a life altering risk . It is interesting to take this into perspective, thank you for this!

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