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Cancer, Patient Care

Doctors: Please have “ears that hear”

Doctors: Please have "ears that hear"

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from Iowa’s Judy Peterson.

Several years ago we moved back to the Midwest, and I needed to find a family physician. I opted for a female doctor, hoping that as a woman she might be more tuned to my aging female body and to its potential health problems. Potential, I say, because I thought I was in good health.

I liked my new doctor and enjoyed my annual physicals and other visits. But looking back, I wish she would have listened more closely to my seemingly minor complaints. I may have been ignorant about the subtle and near-silent symptoms of ovarian cancer, including rib pain and the frequent need to urinate, day and night, but my doctor should have known. I expected her to know.

It was in 2007 when I first mentioned rib pain to my doctor. I told her I couldn’t sleep on my right side. Six months later I mentioned it again, and in late 2008 I once more mentioned the nagging discomfort. During that visit my doctor did a two-second rectovaginal pelvic examination and, as part of my physical, a full blood work-up. The results were still at the lab so before I left I asked her to send me a print-out.

Several days later my blood results arrived in the mail. Three pages. At the top of the first page my doctor had written, “Looks great!” endorsed by an inked smiley face. I casually scanned down the first page. Everything looked normal. But when I got to the third page I noticed my alkaline phosphatase reading was abnormally high, and I did what any normal person does these days: I Googled. Possibilities included problems with the gall bladder or liver and that dastardly word “cancer.” Naturally, I opted to think it was a gall bladder problem and asked for an ultrasound, which showed a large gallstone that I went in to get removed.

My gall bladder surgeon was the one to give me the bad news. As I came out from under the anesthesia, his face swirled in the white light above me while he told me he had found cancer in my abdomen and on my liver. I remember distinctly the photos he showed me. Still under the influence of anesthesia, I replied quietly, “That is not good news.”

Fortunately for me, my surgeon referred me to a Gyno/Onc who debulked me, removed 95 percent of the cancer, tied my intestines into little “animal balloons” (I jest only slightly), returned them to my ab cavity and put me back together with 43 metal staples. I had just endured the “mother of all surgeries.” It was a brutal surgery but without it I would be long dead. The official diagnosis was ovarian cancer (stage III-C), and chemo followed. And followed. And followed.

Three and a half years later, I’m on my 5th chemo regimen. All things considered I’m doing fairly well: I lead an active life, do some volunteer work, take care of my home. I’m grateful to be alive. But I can’t help but think that if my doctor had listened more closely, more sharply, with “ears that hear,” to my ongoing complaints about rib pain, or if she had provided me with a simple informational brochure so I would been more knowledgeable, perhaps I would have been diagnosed long before Stage III-C.

Every woman knows about breast cancer. But very few know about the symptoms or diagnostic tests involved with ovarian cancer – which could be why most of us are diagnosed late in the game, when statistics for survival are grim. Awareness is the most important piece of diagnosis – awareness by both the medical professional and the patient – and so I ask doctors to educate themselves and their patients about this deadly cancer.

Judy Peterson, of Onawa, Iowa, is enjoying her retirement years with her husband, children and grandchildren. She blogs about a variety of topics, including her walk with ovarian cancer, at Wanna Walk Along?

13 Responses to “ Doctors: Please have “ears that hear” ”

  1. Wendy Station / Encephalitis Global Says:

    High five to you for sharing your story, Judy. I honestly know little… if anything… about the signs and symptoms of ovarian cancer.
    Your words have put that topic into my head to mention to my female friends AND to my physician on my next visit. To you I send thanks, on their behalf.

  2. Carolyn Thomas Says:

    Thanks for sharing your frightening and tragic story with us, Judy. It’s a cautionary tale that all women should be aware of.

    Like Wendy, I too know little if anything about symptoms of ovarian cancer – until now. Here’s what I found out:

    http://cancer.stanford.edu/gynecologic/ovarian/facts/symptoms.html

    I see that rib pain is not listed here among common symptoms, so perhaps that explains why your doctor didn’t snap to attention at your first complaint of rib pain. Good luck to you in your ongoing treatment for this – hope it will soon be your last round needed.

  3. Judy Peterson Says:

    Carolyn, in looking back, I believe the rib pain was due to the presence of cancer nodules on the surface of the liver. I felt a milder version of that rib discomfort (under the lowest right rib) when I recurred with cancer again on the surface of the liver. That cancer disappeared with the next chemo and the pain has not recurred. The ovca is currently (hopefully) limited to lymph node involvement. Many of my fellow ovca patients, stage III-c, also mention having had a discomfort under the bottom right rib so I do not think this symptom is exclusive to myself. It is probably not likely present in earlier stages.

  4. Denise Says:

    Judy,
    Thank goodness you were smart enough to read all the details. It’s just sad. Many of us have very similar stories.

    You are so strong and I do admire your honesty, your strength and care in the group. Hugs to you for a job well done.

    Thank you for sharing your story.

  5. Mary Says:

    Judy,
    I’m glad you pointed out the discomfort under the right lower rib. I think it is more common than realized. I, too, had tests for GB disease for nausea and “fullness” and discomfort in the liver area for almost two years before being diagnosed in 2004. I wasn’t aware of ovarian CA and neither was my doctor who didn’t want to do a CA125. But this is 8.5 years ago. Education of physicans is very important. I’ve been educating my twin nephews who are now in their residencies!

  6. Jan Says:

    Judy,
    Your story sounds so similiar to mine. I delayed going to the doctor because I felt like I was whining. Saw Dr. Oz show in April 2012 about ovca but still delayed going to dr. Went to dr. in May for annual physical and symptoms were dismissed as my divertiuclosis. After another symptom appeared I visited my doctor again and after much talking she did order a vaginal ultrasound. Guess I am lucky that she listened then. Large mass, surgery in Des Moines on 7/17. 3c ovca. Chemo will start soon. I’m still debating about “firing” my doctor.

  7. GC Says:

    It is so sad that this story is the rule and not the exception.

    Doctors: Please, stop dismissing women’s symptoms! Realize that the chemo suites, and heaven above, are crowded with women whose doctors failed them while cancer grew inside them for years.

  8. Sharlene Lee Says:

    Judy I am happy you posted this info. I am on Inspire too and agree with you that too many drs miss the subtle signs of cancer. We know our own bodies and need to learn how to get drs to listen to us and our concerns. thank you very much.

  9. HealthCare Social Media Review #11 « The Healthcare Marketer Says:

    [...] months I’ve been following a series of ePatient posts on Stanford School of Medicine‘s Scope Blog. In collaboration with Inspire, a company that builds and manages online support communities for [...]

  10. Itzhak Brook MD Says:

    I was sorry to hear about the missed early diagnosis. In my experience as a physician 90% of making the diagnosis is through patient’s history.Unfortunately. many physicians forgot how to listen and are too rushed and busy and rely on tests and scans, instead of good examination and listening.
    Being a physician did not shield me from this unfortunate reality as I wrote in details in my book: My Voice: A Physician’s Personal Experience with Throat Cancer”.
    Unfortunately patients have to rely on their vigilance and advocacy to improve their care.

    Itzhak Brook MD
    Blog site: http://dribrook.blogspot.com/

  11. Dee Says:

    Hey guys, I have always suffered from hormonal imbalance, since puberty, so my periods showing up twice a year or spottin for dats is a norm for me, last year november I got a new symptoms, severe lower abdominal pain, I was diagnose with infection in the tubes. I drank three courses of antibiotics then the pain subsided somewhat. The pain persisted so my gyno dent me to do an ultrasound. The results showed I have polycystic ovaries.I was put on metformin for that. A few weeks after that I started developing pains in wierd places, my pelvic, upper thighs, shoulders, lower rib, arms and lower back. I went back to my gyno and he told me I might have fallen when I was very young. He prescribed pain tabs. I was goin to acceptb that so I went to another doctor and he prescribed multivitamins and pain med. Of course these did not help and my pains got worse. I finally went and did a CA 125 test on my own and the level was over 46 compare to a normal CA level of 21. There is where I am at now. My next move is to go back to my gyno with this. So say a prayer for me guys. Have a feeling I will b needing it.

  12. jim Says:

    I am Judy’s husband and I wanted you to know that Judy lost her fight with ovarian cancer. She died June 23, 2013.

  13. Yvonne hart Says:

    Will be going for my tests tommorrow I have been to gps lots of times feelings of flue like symptoms and right sided pain two months later ,went to casualty with bad pain discharged after morphine and difflofenac prescribed. second week after discharge still heard nothing, so I rang hospital as I was supposed to have a pelvic scan as an out patient as urgent. This didn’t happen as an out patient , hospital consultant apologised, will arrange herself asp. I wait my fete as things progress . As I don’t look so unwell but feel close to death at times. The waiting takes it toll ,as soon as I know I’ll write a short note, to let readers know. If I have got cancer in that area I would like to help formulate and support others in being more proactive early on after having the symptoms. It’s such a shame that by the time you realised what you have it’s often too late. X I had so much planned in my later life, but may have only a short time to fit it in. I feel sorry for my children, and my wonderful husband who will need support through all this .

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