January 21, 2010

What Tricks Have Worked For Managing Your Own Care?


One of the coolest feelings is getting emails from patients who say, “I saw you speak, or I read your book, and you totally convinced me to get super aggressive with my doctor, or hospital, or employer, and it worked!”

Managing my own illness has at times felt lonely and defeating.  When I’m crying on the phone with a receptionist trying to get a sooner appointment, or flat like a butterfly pinned down to an exam table, it’s easy to feel at the mercy of the system.  That’s why it’s incredibly important for me to hear and tell success stories about being a pro-active patient. Here’s one:

Six hospital personnel were hovering over a table looking down at my neck: pathologists, radiologists, nurses, and fellows.  They were preparing to do multiple ultrasound guided needle biopsies of deep nodes. Before they began, I sat up and said: “Before you start with the needles, could you first ultrasound my neck and compare it with the images from my previous ultrasound? If the nodes have shrunk significantly is it possible this is not cancer but swollen glands instead?”

They agreed with my suggestion, performed the ultrasound, made a comparison, and conference called my doctors.  The nodes had shrunk considerably and did not merit biopsies. By speaking up, I avoided the pain of the procedure, anxiety of waiting for results, and saved my insurance company thousands of dollars.

I’m not a magician.  I cannot pull insurance out of a hat or make my tumors vanish. But I can catch record keeping errors, reduce my risk of infection by asking my docs to wash their hands, and speak up when I’m having logical thoughts about my health that don’t jive with the care I’m getting.  Forget the power of positive thinking.  I’m about the power of positive, smart, and aggressive action.

Tell me your success stories – even simple ones – about being a proactive patient so other reader can be inspired to use your tricks. What helped you get an appointment, obtain medical records, change your course of treatment, gain approval from an insurance company, or make your care more efficient?

Learn more savvy patient tricks in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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  1. Cathy Bueti Says:
    January 21st, 2010 at 12:07 PM

    Great post Kairol! I am all for being a proactive patient! It is hard to not get sucked in by the fear and speak up for yourself, ask questions and demand the proper treatment. But so important.

    A couple of years ago I had my annual breast MRI to monitor the health of my non affected breast. For 6 years prior all the scans were clean except this one. It showed a 2 millimeter blip. Of course I freaked out and was terrified that cancer was back in my other breast. My docs immediately shoved me in for an ultrasound which they couldn’t see it on. The radiologist and my breast surgeon both told me that they were 90% sure it was nothing of concern. Just as I felt some relief ….then came the BUT….we need to schedule an MRI guided stereotactic biopsy to make sure. At the time I was too scared to say…can we wait and then rescan in a few months. So I scheduled it and had to wait 3 freakin weeks just to get the test! The test was unbelieveably barbaric and wouldn’t wish it on my worst enemy! The results came back benign thankfully however then they wanted to schedule surgery to remove it all. Could it have been any smaller? and why the need to remove something benign? The cost of the biopsy was 12 k and it took me 2 years to pay off the 30 % my insurance didn’t cover plus other fees that were not covered at all. S

    So when I heard “surgery” I finally grew a set and said wait! I wanted another MRI scan to see if it was growing or gone on its own before I went under the knife. Sure enough I went for the followup MRI 6 months later and it showed that the area of concern was “no longer visible”.

    Finally speaking up paid off for me not only saving my insurance and myself huge amounts of money but saving myself unnecessary surgery that could have been dangerous given that the area was near my chest wall.

    I am thankful that it was benign but wished I had saved myself that biopsy as well! Better late than never!

    Never stop asking questions, and challenging your medical team. Make your voice heard!

  2. Star Says:
    January 21st, 2010 at 1:28 PM

    I could write a book on how to do this. My most recent and one of half a dozen major skirmishes since moving to the great state of AZ 14 yrs ago: I had a questionable mammo for the first time in my 65 yrs of life. They suggested a sono and diagnostic compression mammo as followup. The only facility in the chain of centers I had been using that did both had treated me like hammered crap the yr before on a DEXA. So I went for the followup to another chain.

    Before making the appt, I asked the names of the radiologists. I was given three names. I checked them against the AZ Medical Board database for past actions, letters of warning or reprimand, or other dings. All were clear. I had the sono done and the followup mammo. When I got the whole report (you always do that, don’t you–now just the letter saing you’re normal?), a fourth doctor had read both tests. I went to the medical board–he was on probation, had another letter of reprimand. I googled him—surrendered his license in NY! I had a fit and insisted one of the original three docs read it. Turns out the radiologist watches the sono from another room (that’s not creepy). So no re-read there. I did get the mammo reread–but he did not have my past films or ask for them. I got those AGAIN and had another reread. I guess I am OK. They offered me another sono–but I am never going in that place again. The EVP was snide and never returned calls. WhatEVER. As I said, this is just one battle I have fought. ALWAYS GET YOUR FULL RECORDS–not just those funky little summaries or reports.

  3. Kate Says:
    January 21st, 2010 at 2:22 PM

    I was having a visit with my oncologist and he hurried into the room and started talking. He kept talking about a medication that was not one of the chemos that I was on. I tried several times to tell him “That’s not my chemo” to no avail.

    So I stood up, placed my hands on his shoulders and looked into his eyes and stated again “That’s not my chemo, Are you suggesting we make a change?”

    That got his attention and we never had another misunderstanding again :)

    The funniest thing to me is whenever I tell this to anyone they practically go white and are all stunned that I dared touch my doctor.

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    January 21st, 2010 at 2:37 PM

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  5. Rebecca MacKenzie Says:
    January 21st, 2010 at 2:44 PM

    I’m still practicing and learning the ropes, so I don’t have many suggestions at all. One thing I would say is this is YOUR life. Always remember that. For me, I always remain respectful, but when it comes to mistakes the doctors might make or something that I know is unnecessary or wrong, politeness gets a good swift kick out the door.

    I’m glad you put this stuff out there so adamantly. Too many of us sit back and just hope things will get done. With that mentality, nothing will ever get done. So thank you.

  6. Carey Says:
    January 21st, 2010 at 2:50 PM

    I participate in the Ovarian Cancer National Alliance’s Survivors Teaching Students program wherein survivors go before classes of med students and the like and tell our stories.

    I always start with a line from my chart “Patient is a pleasant ….. woman” which I figure has to mean “over educated, Type-A, pushy broad”.

    I pulled every string I had access to to get into my treatment center of choice– both the first time and since then. This is, literally, life or death– do whatever it takes.

    But, you have to balance it with the other side too– I am always sure to thank those who are helpful. I write letters to their supervisors if appropriate. I bring in baked goods.

    (I LOVE that photo!!!)

  7. Mandilyn Says:
    January 21st, 2010 at 2:51 PM

    It’s a relatively small thing that I did but it helped tremendously. I had two thyroidectomy surgeries, two weeks apart. When I was waking up after the first one, I immediately and keenly felt that my ankles were in unbearable pain – forget that they just sliced my neck open, my ankles were killing me! See, even though I have it on my records, I didn’t think to mention to anyone that “I have RA, please make sure I’m bolstered and propped properly during surgery or I will wake up in unimaginable pain”.

    The second surgery rolled around, and this time I was determined to keep the awful ankle pain from recurring. I told EVERYONE who would listen to me, anyone who came into my little waiting room, what had happened last time and it had been worse than the surgery pain itself. I mentioned it one final time, half drugged up in the actual OR, just before they gassed me. Just before I conked out, I felt my ankles being lifted and a magical pillow that materialized from somewhere was placed under them.

    No ankle pain the second time around. Bliss. Of course, I actually noticed the post-slicing-of-neck pain that time… Small price to pay.

  8. Donna Says:
    January 21st, 2010 at 3:03 PM

    When I feel like I am not getting the attention I deserve from my doctor’s office I remind myself that they work for me. I am paying them money for their services. And I don’t expect less from anyone who provides me a service.

    I had an issue with my Endocrinologist and told her how unhappy I was with her office staff. It was difficult to get appointments or records forwarded to my surgeon. I told her that if it continued I would go elsewhere. Not only did she give me a separate phone number to call for ANYTHING I needed but she confided in me that she was unhappy and was starting her own practice. To this day I still have a separate line to call and she always asks me at least twice during a conversation if I have everything I need. If I am okay. She realized that without patients she has no practice.

    Also, as someone else stated – this is your health. Nothing is more important. Stand up and be heard.

  9. Mandy Says:
    January 21st, 2010 at 3:19 PM

    Changing the lighting in my home did a lot to help with the side effects of chemo. Now that I’ve pretty much mastered the dietary changes (I’m not perfect with sugar, though) – I’ve realized there’s plenty of change to make in my environment to heal myself. I work for ChiliTechnology so am lucky to have access to a ChiliPad. It really helps with stiffness and inflammation in the mornings, hot flashes, and with getting a full night’s sleep (it’s a mattress pad that lets you change the temperature of your bed, either heating or cooling… very useful).

  10. Chris Danaceau Says:
    January 21st, 2010 at 4:29 PM

    My moment came after my second biopsy. I was recovering in the ICU on a Morphine drip and my catheter fell out. That’s a problem since the Morphine makes it almost impossible to pee. Eventually things got to the point where they tried to put it back in. First my nurse – No luck. Then the whole ICU team – again no luck but there was some bleeding from the trauma. The surgeon on call wanted to give it a third go-round. At that point I’d had enough of the “B” team. I asked him what the risks were of NOT putting it in. He mentioned potential kidney damage. I told him that being in otherwise excellent physical health, I’d take the risk, but I was NOT allowing a third attempt. I was going to try MY plan based on previous experience (Did I mention it was my second biopsy?). I had them take me off the meds and get me on my feet. I’d walk it off and hope things cleared up when the narcotics wore off. It took a few hours, but sure enough, my plan eventually worked.

    Bottom line, just because the doctor says “You should do X,” doesn’t mean you can’t have input into the decision.

  11. Greyash Says:
    January 21st, 2010 at 4:58 PM

    When I was first diagnosed, I had a week old baby (my first) and my mother was taking care of me because my husband was in Russia due to a technicality on his visa. I was scared and alone. The doctor who diagnosed me was trying to get me in to see an ENT and the soonest we could see anyone was at least a month out. At that moment, a month seemed an eternity to wait to find out what we needed to do, what needed to happen, what my prognosis was, what I was looking at in the near future, what would happen to my new born baby.

    After calling around and driving around for 3 days hoping to invoke some sympathy with the cute little baby (and having no luck),my mother got on the phone with a doctor we knew from back home who had happened to work in the area I now live in for a while. He gave us the numbers of two doctors “that he would trust to operate on him” if he needed it. Being a surgeon who could no longer operate due to a botched surgery, this was a high compliment.

    We called these doctors and it just so happened that one had an appointment cancel the next day. We went to see him and I am so lucky to have met him. He not only got me through my first two surgeries and has watched over me like an angel, but also knew when to send me to someone who “had the equipment he didn’t” when my case became more complicated. Had we not met this doctor, I would not have made it this far. He feels (I know in my heart) like he has failed me in some way – some where he feels he went wrong. But he has not – he was the doctor I needed then, and the doctor who got me where I needed to go in the end.

    I have also fired some doctors along the way, and stuck with doctors who I know in my gut are looking out for my best interest
    , despite people around me wondering aloud “should we go to Houston or New York for a second opinion?” If that day comes, I will – but I trust my gut, and I go with it when I need to. That is the most important thing I have learned.

  12. winediva Says:
    January 21st, 2010 at 5:50 PM

    Suck up to receptionists. Make no mistake, these folks make all the trains run on time and have access to Doc’s pagers. I make a point to greet them all by name on every visit. During the holidays I try to bring them a treat as well. Just a moment of simple pleasantries every time you come in can make a world of difference when you need a doc’s attention right away – either next available appointment or a quick returned phone call. I find these ladies and gents usually have my back.

  13. Jen Says:
    January 21st, 2010 at 8:39 PM

    Be nice. My opinion is that you can get a lot accomplished by being honest and kind to others (being immediately stern and demanding can put the other person on the defensive). That being said, it is important to also be firm; for instance, when dealing with insurance companies, stick to your guns. Insist that the test recommended by your doctor IS medically necessary, etc. Don’t fold at the first sign of resistance.

    Be knowledgeable. Do your research. Ask questions. There is less chance of mistakes if you are also aware of what is going on in your own care. Plus, it helps doctors to take you seriously if you are informed and smart about your care.

    Related to the above, do not be afraid to seek second opinions and to ask questions. It is all an important part of getting the best care that you can and that, bottom line, can help save your life.

  14. carolbe Says:
    January 22nd, 2010 at 5:24 PM

    I have gotten quite proactive about hygiene since my husband has gotten MRSA staph twice following hospital visits. I simply ask if the doctors or whoever has washed their hands, unless I see them do it. I care not if they are offended. During my breast biopsy the nurse put a roll of gauze on my abdomen. It rolled off onto the floor. She chased it down and picked it up. I asked her sweetly what she intended to do with it, and she just stared at it. I suggested that she toss it in the trash and wash her hands and change gloves. What power it gives you!

  15. Laura Morefield Says:
    January 22nd, 2010 at 5:37 PM

    Amen to all the folks out there challenging the doctor/patient paradigm. Doc’s are not infallible and often the generalists don’t know as much as thos who specialize in “your type” of cancer.

    So I turn to the mundane: I have a 3 ring binder where I keep a spreadsheet of my blood tests, a list of my drugs, a list of my surgeries and the DVD copies of all my scans. The has been enormously helpful for my own understanding/ownership of my treatment choices It’s also quite good when paperwork or scans get lost as they inevitably do at certain doctor’s offices.

    2nd mundane tool: A notebook with all my doc’s cards in them, where my guest (either hubby, parent or friend) takes notes for me as I take notes in my symptom tracker/q’s for doc notebook. Helps for making sure we are all on the same (literal) page and helps me remember what was said 5 months ago.

    I also practice reflective listening with my docs. “So what I heard you say was xxx. Is that right?” It’s led to some very helpful conversations.

  16. Pat Steer (Gaelen) Says:
    January 24th, 2010 at 6:18 AM

    For a lot of my care, I’ve had to travel to NYC. At one point, I was making a 5-day trip to NYC every four weeks for a scan, doc appointments and an HAI treatment (pump infusion chemo to my liver) – that went on every four weeks for 13 months.

    Luckily, for most of that time I was able to stay with my brother who had a room in a flat on the upper East side; no worrying about hotel reservations or finding a spot in a care house for the week. But every trip when I came home and picked up the dogs at the kennel, I made next month’s reservation; one less thing to do later.

    The other thing – well, combination of things – that made those NYC trips run smoothly was that I picked one bag out of my collection of backpacks to be the ‘NYC bag’ and dusted off a small piece of rolling luggage that was light and easy to haul up and down subway steps. I chose a NYC wardrobe that would work for all seasons. I splurged on a couple of those little travel organizer bags for travel necessities. After each trip, I’d unpack, wash my NYC wardrobe and repack the suitcase. I’d clean out the backpack and file my notes. I replenished the travel stuff (toiletries, ostomy supplies, makeup) in the dedicated packing bags. Except for laundry day, my bag and backpack were always packed and ready to go.

    I know – sounds kind of silly. But knowing that I was already packed took a bunch of things off my to-do list for each month’s trip, and meant I wasn’t racing around at the last minute doing laundry or packing or looking for my travel phone charger. Less stuff on the to-do list meant less stuff to worry about on traveling days. Less worry usually meant a smoother trip.

    Now that I’m not traveling so regularly, my luggage isn’t always packed. On my last trip, I forgot some things. So now my suitcase is packed again – and I made a new packing list and put it in the inside pocket of my backpack for a quick-check before taking off.

  17. Tara Says:
    January 24th, 2010 at 3:07 PM

    I always new you needed to be somewhat proactive, but the cancer experience made me realize you really need to be extremely proactive and careful. Sadly, you can’t take for granted they know what they’re doing, even with the simple things. I’ve learned to…

    -Pay attention when they’re giving your drugs/meds, just because they say your correct name/DOB, the drugs/dosages can still be wrong. I caught a higher dosage that way once, of a med I already was very sensitive too. Had I received the higher dosage, it wouldnt have been fun.

    -Repeat any allergies and reactions over and over to each person dealing with you. Same goes for what meds you’re taking, to prevent any interactions as they give you new stuff. One thing I’ve learned is despite wherever they have it written down, etc.. they still don’t know! I’m allergic to CT dye and still get Rxs written to receive dye, even after stating it sometimes. So check and double check. And repeat before every procedure. I was lying on a table about to receive an injection, and I repeated my reactions once again to the 3rd person who walked in. Upon hearing that, she had to stop the test adn not give the injection saying “it was too unsafe”. Had I not mentioned that, i wouldve received it.

    -Question whatever doesn’t feel right, or you know in fact isnt right, and be firm. I had to learn the hard way, I was often too nice and would politely question, and then suffer reactions after I gave up and listened to the staff who was wrong. Now I learned enough is enough, despite what they think, I know my body and was right every time I questioned something. So now I trust myself, but ha, dont wait like me and suffer unecessarily over and over again. I also request they put certain notes in my chart, but again, that doesnt always work, you still have to re-say everything.

    -Get copies of everything, and if you can, or like to, get copies of tests BEFORE you see your doctor so you can have your questions prepared ahead of time and more time to process. I don’t know if this will work for everyone, but I find if you call the film library or whatever dept it is that you obtain results from, right after or the next day after having the test done, you can request report copies & CDs of scans, and usually have them within a couple of days. I schedule my doctor follow up a week or so out, so I”ll have the results by then.

    These are some of the things I now make sure I routinely do. I’ve learned no one is going to look out for you as good as you will. I used to think I could trust drs,nurses,etc with some stuff, but sadly, I learned I really cant trust anything. And maybe my experience was atypical.. but i’m at a “good hospital”, with “good doctors”, and I’ve had tons of stuff happen. If all that can happen to just one person, I’d think it has to be happening to other people. So as scary as it sounds, be cautious!

  18. Kairol Rosenthal Says:
    January 24th, 2010 at 3:51 PM

    I love this list. Thanks all for your smart comments. I totally agree with Tara’s comment. I too go to fantastic hospitals and see great doctors. Still, mistakes happen. Humans make errors. The system is overwhelmed. More people die each year in the United States from medical related errors than from breast cancer. This is a huge, important, life-saving issue. Being a proactive proactive patient is one of the best things you can do to race for your own cure!

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