Collateral damage after cancer surgery

Dr. Robert’s office felt right to me, with a musical birdsong soundtrack, soft lighting and fresh green tea, and I had my best friend in tow: piece of cake. In this serene atmosphere, I was sure that I’d find out what to do next to finish treating my endometrial cancer.

“It’s probably gone now, since my hysterectomy two weeks back,” I thought. “But let’s play it safe; he’s the gynecological-cancer guru.”

Like a general gearing up for combat, Dr. Robert said, “We can beat this. We’ll do a second surgery to remove lymph nodes and omentum–robotically, of course, so your recovery time will be quick. Down the road we’ll definitely do radiation and chemo, and your odds of recurrence will go way down.”

That tone. So assured …

“What’s an omentum?” I asked hesitantly.

“A slab of belly fat deep in the abdomen that can trap cancer cells; we usually recommend its removal if the cancer nearby is aggressive.”

“Side effects?” I asked.

“Not much to speak of. In rare cases, you get a slightly draggy foot from nerve damage.”

My whole psyche was dragging its feet. Did I need this, just after coming through a highly successful surgery?

A month before, I’d sought treatment for a garden-variety fibroid. My primary OB/GYN, Dr. Ann, had offered to remove the fibroid laparoscopically. Beforehand, as part of her usual pre-surgical procedure, she sent a tiny chunk to the lab for a cancer check.

Bingo.

A cancerous fibroid is a whole different ballgame, so Dr. Ann and I went to Plan B: a full hysterectomy and ovary removal.

Immediately after the surgery, Dr. Ann cradled my head in her sweet-smelling arm and whispered affirmations to me, cheek to cheek. Although everything else is erased by anesthesia, I clearly remember the feel of her skin and how fervently she whispered, “You’ll even want to eat salmon!”

I did heal like a champ, wowed by blissful, oxycodone-induced hallucinations and by seeing my teenage daughter mature as she stepped into her new role as pants-puller-upper.

Call me a flake, but I believed that Dr. Ann’s surgery had removed the cancer. During waking hours, I couldn’t drum up any sincere worry. (But I did have nightly “mares,” always the same: a terrifying man breaking into my house, and I a throttled screamer. On a subconscious level, my fears about cancer were in overdrive.)

My first post-op visit with Dr. Ann, a few days after the surgery, was tremendously reassuring. She showed me the lurid photos she’d taken of my cancerous uterine fibroid, backlit and glowing ruby-red, so I’d finally see my torturer. (I still have a wallet-size photo.) We laughed hard, which I don’t recommend after abdominal surgery.

Then she went over the lab results with me. The cancer was grade one (not aggressive) and had been relatively contained, with just one other spot on one of the removed ovaries. Dr. Ann told me that this spot was a bit of misplaced endometrial tissue that had sprouted a tumor. It was not ovarian cancer, which is often more aggressive. Welcome news. She poured her heart into reassurances.

But still. “There are other treatments, like lymphectomy, chemo or radiation, that I want you to consider,” she said. A recent cancer survivor herself, she wanted to make sure that I stayed in touch with my inner warrior. She sent me to Dr. Robert.

And Dr. Robert insisted that lymphectomy/omentectomy was the least I should do. According to him, chemo and radiation were necessary insurance against the big C.

He described the omentum as having little purpose and regaled me with stories of women who were vacuuming the house eighteen hours after their surgeries.

I’d studied ecology in graduate school; its principles guide every part of my life. I know that everything is interrelated, and that when you do one thing, it can affect other things in surprising ways. But I wanted to believe that the cancer was behind me.

Also, I was foggy-headed, suffering from cold-turkey estrogen withdrawal after the hysterectomy. So my antennae weren’t up, and my energy for fact-checking Dr. Robert’s claims was nonexistent. And then there were those nightmares …

Ultimately, it came down to this: Dr. Ann recommended that I take Dr. Robert’s advice. He was the expert. Hoping that lymphectomy would seal the deal, I had the surgery.

The immediate after-effects:

  1. Excruciating shoulder pain, referred from my diaphragm, from gas injected during surgery.
  2. Lymphedema, a build-up of fluid caused by lymph-vessel blockage. Within two days, I looked like a sumo wrestler, with lymph pooling around my middle. No clothes fit.
  3. A walnut-sized pocket of lymph in my right belly. One night at supper, my shirt suddenly grew wet as lymph spurted out of one of the operation slits.
  4. Permanent nerve damage and numbness: Dr. Robert had accidentally cut nerves to my left quadriceps, groin and lower belly.

Dr. Robert had mentioned none of these possibilities.

During my hospital stay, I never saw him. Once home, I repeatedly phoned his office, begging for help, but he never called back. Two weeks later, during our only post-op visit, he said the nurse had never told him.

Having removed more than half of my abdominal lymph nodes, Dr. Robert found that they were all cancer-free. My post-op report stated that he’d removed them prophylactically; as I saw it, that was like removing a hip so I wouldn’t break it.

A year later, I found my legs and buttocks swelling up again. At first I thought I’d twisted my ankle, but eventually Dr. Ann enlightened me: I had chronic lymphedema.

She steered me to cancer rehab, where I learned I could improve the symptoms slightly with time-consuming exercises, careful skin care and $135-a-pair pantyhose that squeeze me girdle-tight.

Now I roll a tennis ball around my ankle to break apart the fibrosis caused by lymphedema. I research cheaper pantyhose. And to give myself time to exercise and heave my hips into those leg-hugging hose, I set my alarm forty-five minutes early each morning.

I’ve damaged my knee with the grunting maneuvers required to don the hose. Long walks are temporarily a thing of the past.

The last straw is that I must hand wash these tights nightly: an odious eight-step chore.

Looking back, what astounds me is Dr. Robert’s profound lack of curiosity about his interventions’ potential impact on my daily life. He could have anticipated some of the problems.  What symptoms might I develop? How ugly would I feel as a human blimp? And might at least have warned me about what to expect.

And if I’d known the risks beforehand, I could have asked myself which I would choose: uncertainty about a recurrence, or the tedious gamut of lymphedema care?

After this second surgery, friends encouraged me to consult a lawyer about suing. The lawyer explained the difficulties with cases like mine. And I squirmed to think of pictures of my body on a courtroom screen. Frankly, I’m just not the suing type.

In fairness, Dr. Ann affirmed that Dr. Robert’s lymphectomy recommendation was sound. She remained circumspect and uncritical whenever I asked about it. I question only how hard he pushed for it, and how little he said about possible side effects.

I just wanted him to listen. I still wish he would. I fantasize about standing outside his office wearing a sandwich-board sign: “First, do no harm!”

In my perfect world, Dr. Robert would solicit my feedback, listen closely, learn from me and then adjust his methods. Someone else might be spared lymphedema.

And I’d get back my forty-five minutes a day.

Brenda is a teacher. This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

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  • Suzi Q 38

    I understand exactly how you feel.
    It was determined that the tumor growing on my cervix was benign, but that the surrounding tissue was very irregular. It was complex atypical hyperplasia. Not cancer yet, but on its way. The gyn/oncologist, without any scans decided that I should have a total hysterectomy.

    My gyn/oncologist was supposed to give me a second opinion, and in doing so, he recommended a complete hysterectomy, ovaries and all.
    After my hysterectomy, it was determined that there was a small tumor on my left ovary. The gyn/oncologist was leaning towards going back in to test and/or remove more lymph nodes.

    I looked up the tumor in question in a publication called “Up To Date.”
    It said that my tumor was borderline, which means it may grow and become a problem someday, or it may not. At any rate, it was so small that it might have taken years to develop and cause problems.
    The study determined that it was better to “wait and see” with watchful waiting, rather than endure another surgery at that time.

    When the doctor was trying to figure out when to schedule my second surgery, I showed him the paper. I told him that he already had his chance while I was on the operating table the first time.

    I had complications after the first surgery, to which he stalled and avoided me as well. He also stalled as far as getting me to a neurologist quickly. When he gave me a referral, it was to his friend from college who was the neurologist at his hospital. He stalled me as well.

    I was weak in both of my legs, and had numbness in my hands and feet.
    I never had this before my surgery.

    More problems came as the months flew by. I had bowel function and urinary changes. I now had to have a gastro and a urologist.

    I also tried physical therapy. They thought something was really wrong, but was not willing to go to bat for me against my doctor.

    I didn’t think that this was hugely serious at first, so I trusted in their judgment.

    It was at the year and a half date after my hysterectomy that it all came to a “head.” I could barely walk one morning while on vacation. I needed a wheelchair as I had overexerted myself the day before.

    These nerve conditions after surgeries can be very serious. They can start out annoying, but gradually and insidiously get worse and worse.
    One thing I want to say is that as more time passes, It can become irreversible.

    My point is that my case may in no way resemble yours, but general advice from me here is go to a different teaching hospital or first tier private hospital and get the best neurologist you can find.

    My new neurologist told me that they which I had come sooner.
    They were able to stop the progression, but not improve my pain, numbness, and weakness.

    As far as suing, this is very difficult to prove.
    If you decide to do so, you need a huge cash outlay, as expert witnesses are very expensive. Some lawyers will take your case on its own if they think it is a strong case. You would have to be physically challenged for life and not be able to do your job in order for them to take it on a contingency.

    At any rate, the first and most important thing is your health.
    Get your nerve problem checked out.

  • Lisa

    Any surgery can cause collateral damage.

    I developed lymphedema after two surgeries for breast cancer. I knew that I would be having axillary nodes removed and knew lymphedema was a possibilty. What bugs me is that my surgeon minimized the chances of this side effect and that my oncologist’s partner (my oncologist was on vacation so the partner was covering for him) would not answer my questions about the advisability of having lymph nodes removed. He said it was up to my surgeon.

    Lymphedema takes a lot of work to manage and it gets old fast. I am lucky that mine is mild, but can flare up any time. ugh…

  • MikeWB

    I sympathize with your plight and your insensitive postsurgical care.

    I am not a surgeon (or an attorney, for that matter), but I have read many surgical consents.
    I would be surprised if every complication you have had was not listed
    therein.

    • SarahJ89

      When I was handed the consent form for surgery I took out my pen and wrote “no” and initialed every single item on the list. I was appalled to see that the surgeon hadn’t covered even one point. The nurse whisked the paper out of my hand and said “You can sign it in the day surgery center.”

      To be honest, I don’t recall ever signing it, though I must have done so. I’m quite sure the hospital covered its butt. But to call this “informed consent” is to joke a lot. I never got a copy of this so-called informed consent either. I was in way too much pain to think.

    • Lisa

      For both of my hip replacements, my surgeon’s PA spent at least half an hour going over possible complications and the informed consent form. I actually felt like I was fully informed.

      After my second hip replacement, I have some cutaneous nerve damage. I remember discussing the possibility of this complication with the PA. I have no complaints.

      My breast surgeon only discussed possible complications with me when I brought up the topic. He minimized the possibility I would develop lymphedema; saying the chances I would develop it were low. What he didin’t mention is that many woman who have had breast cancer surgery develop lymphedema some years after their surgery. The figure I recall is that around a third of women eventually develop lymphedema. The figure was higher before sentinel node biopsies became common place. It would have been nice if my surgeon hadn’t minimized the risk.

  • SarahJ89

    My experience in 66 years is that informed consent simply does not exist. If you want to know about side effects or possible deleterious results you have to do your own research. Doctors simply will not tell you about them. The best you’ll get is one or two vague references to the more egregious problems. I have yet to find a doctor who understands that it’s possible to think in cost-benefit terms–even if you are a “patient.”

  • JR

    Thank you for sharing your story.

  • Lisa

    I didn’t have to ‘get’ the PA to go over the informed consent form; it is part of my ortho surgeon’s routine to have patients meet with the PA before surgery to go over the from, to go over post surgical care and as a last chance to ask questions. I think the whole appointment took about an hour; my surgeon saw me briefly during that hour, just to touch base.

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