First Screening Appointment

25May10

I just got back from my first screening appointment at the cancer clinic. Today has been my litmus test to how well I can handle walking into the cancer clinic and wait for a doctor to give me a professional assessment of my health.

I got this appointment earlier than expected because someone else cancelled. And apparently the nurse saw where I lived and thought there would be a good chance I could make it on short-notice: I live only a few blocks from the massive hospital complex in the city. I find it ironic living next to the hospital and major research clinics. Seems like such a great convenience, but wouldn’t you rather not have to make much use of their services at all? When I first moved here, I didn’t really expect that I was going to find myself on a 6-month rolling appointment schedule with them. But anyways, I am not going complain about the 5-minute bike ride.

Honestly, walking into the cancer clinic was a little nerve-racking. The building is one of those slightly outdated massive concrete structures where walking into the lobby is like walking into the bowels of a prison. I pulled up my bike and felt acutely self-conscious. I didn’t look anything like their typical patient and it seemed embarrassingly obvious. I picked up a new patient form at the main desk and had to answer questions like whether I was currently living in a nursing home. The doctor seemed amused at the fact I was given that form, which lessened my anxiety a little bit. The nurse running the clinic also acknowledged that patients often feel a little out of place coming to screening appointments in the cancer clinic.

But watching the scenes of elderly being pushed around in gurneys and family members with personal effects in tow, made me realize that I do belong here. Cancer has already been part of my life because of my family. Not that I have done a lot of running around in hospitals, but I did think back to the few times I accompanied my mother to her cancer clinic. And I must say her clinic is a lot more welcoming. It is a newer building with open windows everywhere and an open layout. The chemo infusion room even has wall to wall windows looking out on a private water garden. The only window I saw in my building was in the exam room, which of course had the blinds pulled tight.

This appointment was simply a clinical breast exam and an introduction to the screening process. It was fairly low-stress, although I never feel comfortable around doctors. I got confirmation about my eligibility for MRI screening which was a relief. I have come to believe that mammograms really will not be much use for me. The cancer that struck both my mother and aunt was lobular and was not easily detected on mammograms. Not to mention my youth and small breasts decreases the effectiveness of mammograms for early detection. But when I asked whether the screening procedures are ever changed for circumstances like this, the answer was no.

I was also reminded several times that the clinic advised women to remove their ovaries around age 40. That seems reasonable on the surface, but I couldn’t help but wonder quietly “even for BRCA1 carriers who have higher risk for ovarian cancer at younger ages?” and “even for BRCA2 carriers like me who are not in the Ovarian Cancer Cluster Region and have no family history of it?” And this made me a little frustrated. Medical care to me feels like fast-food. There is an immense amount of medical research done with results full of various subtleties. But all of this research gets distilled, simplified, analyzed for cost-effectiveness, and packaged to patients as a one-size “standard of care.”

Now I know I might be coming off as ungrateful considering that genetic testing is a prime example of how medical treatment is becoming more personalized. And I will definitely admit that I tend to hold things up to terribly high—maybe unattainable—standards. But isn’t that only natural when it’s your own body and health? On the other hand, I do have sympathy for health care providers who have to face people that want doctors to move mountains for them everyday. I don’t really expect to be privileged (or rich enough?) to receive only the most state-of-the-art care at all times. I guess I just get the impression that other people feel a sense of relief having a medical expert “take care of them,” but I don’t feel that. I get about as much comfort from the experience as I do with taking my car to a mechanic I found in the yellow pages (back when I used to have a car).

So all in all, I guess I passed my litmus test. I wasn’t terribly worried going into the appointment and I don’t feel terribly different after it. Meanwhile, I think I need to find a dentist to take some wires out of my mouth before I can get my MRI.

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7 Responses to “First Screening Appointment”

  1. But all of this research gets distilled, simplified, analyzed for cost-effectiveness, and packaged to patients as a one-size “standard of care.”

    This is so true on so many levels, and can really be harmful. The way I understand it, the “standard of care” is supposed to be a set of general recommendations that doctors tailor to individual circumstances. Unfortunately, sometimes I think health care professionals get lazy and don’t tailor the standard to individual circumstances. Hopefully you’ll be able to find a doctor who can help you work through your own needs with your particular family history.

  2. I just found your blog and wanted to send you a message and introduce myself as I am a fellow blogger myself.

    I remember my first breast MRI and my first mammogram like yesterday. I didn’t think it would be a big deal, went by myself, and just remember sitting there wondering why me, at 23? Why was a here? Seeing all the sick people around me still always brings on fear but then when I am able to push that aside I remember that I am not sick right now and this is all to prevent that from ever happening.

    Best of luck and keep writing.

    Allison
    http://powerofourgenes.wordpress.com

  3. Just so you know, doctors are beginning to come around and modify their recommendations to BRCA2 women, especially those outside the ovarian cancer cluster region of the gene without a family history of early onset of ovarian cancer. Most doctors who are up on the current research will be comfortable with such carriers waiting until closer to the 45 to 50 range to remove their ovaries. Personally, I am BRCA2, inside the OCCR, but my doctors all agreed that they would not begin to push me until I was 45, so long as I promised the ovaries would be gone by the time I turn 50. I am nearly 46 so the decision is now looming for me. But I have not felt pressured until the past year. And even then the pressure has been mostly internal, my doctors have been patient.

    Joi
    http://www.positiveresultsthebook.com
    http://positiveresultsthebook.blogspot.com

  4. Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs” with over 1000 other personal cancer blogs at http://www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
    If you have not visited before or recently, please stop by. If you agree that the site is a worthwhile resource for those affected by cancer, please consider adding Being Cancer Network to your own blogroll.
    Now that you are listed, you can expect to gain a wider audience for your thoughts and experiences. Being Cancer Network is a place to share and communicate.
    And like bloggers everywhere, I love receiving your comments and ideas.

    Take care, Dennis (beingcancer@att.net)

  5. 5 Franny

    I wanted to share a site to a online medical news publisher that offers many articles on breast cancer & BRCA.
    http://www.dailyrx.com

  6. I don’t think doctors should make anyone ‘promise’ to get body parts removed! What is wrong with screening and then treating IF and WHEN something happens for BRCA positive patients? I’m so tired of these doctors that basically only have one recommendation – off with both breasts and ovaries and make sure my kids gets tested too at age 20. Incidentally they never discuss the fallout from those procedures either – such as increased risks on osteoporosis and heart disease. I tested positive for BRCA1 after a lumpectomy for Stage 0 DCIS. I am preparing for radiation treatment on that breast. Sometimes I wish I had never let the surgeon talk me into the genetic testing.

  7. 7 Ashley

    Wonderful blog, just what I needed to hear… a voice similar to mine. I’m BRCA1+, getting a lot of feedback from the doctors basically asking when do I want my ovaries and/or breasts removed. I just feel like there needs to be more research into how this works out – die young from cancer or die young from heart disease?!


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