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A retroactive timeline through the medical labyrinth, part 1

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This entry is my attempt at making sense of all the appointments, tests and procedures I’ve been through over the past two months. The title should really be: “Ping-pong down the labyrinth of a medical black hole.”

December 22, 2012: First contact with the medical system

I go to the urgent care clinic, and they admit me at a hospital in a different town for the day. John and I spend all day Saturday at the hospital. I get a bunch of tests: bloodwork, discharge culture, palpation, ultrasound. I get an urgent referral to the breast clinic. The doctor prepares me for the possibility of inflammatory breast cancer. Prescribes pain killers and penicillin. Tells me to contact my regular doctor and tells me to go to the ER if the pain becomes unbearable outside of office hours. Tentative diagnosis: mastitis. Differential diagnosis: inflammatory breast cancer.

December 28, 2012: General practitioner

Getting worse. Constant nausea from the painkillers and the antibiotic. Can’t eat much. Pain increasing. My GP is on vacation, so I see a young intern who decides I need to take two different types of antibiotics simultaneously and tells me to increase the pain meds. She orders more blood tests and cultures.

January 4, 2013: General practitioner again

My GP is still on vacation, so I see another intern. My complaints: I’m getting worse and the pain meds have given me bloody bowels. (EW. Gross. I know.) Is there a pain med that won’t make my guts bleed and will actually control the pain? She prescribes Tramadol, a synthetic opiate. Oh dear. I spend the next weeks in a fog, a daze, an alternate universe. The nausea is so bad, I carry freezer bags to puke into and have a barf-bucket by my bed. I can only eat ginger noodle soup and saltines. (On the bright side, the two kilos I put on over the holidays are gone.)

January 11: I finally get an appointment at the breast clinic!

After freaking out about the possibility of breast cancer for the past few weeks and calling two or three times to ask when they can see me, I finally get to go the breast clinic. These are the specialists. They know what they are doing. They will be able to diagnose me and fix me. Right? John and my sister Connie, who is almost finished with her nursing degree, come with me. I am terrified. This is it. This is the day that could deliver the big blow.

I get a mammogram. Actually, I get six: three shots of each breast. I’m glad I doubled up on the pain meds because the pain of having my boob squished between those plates can only be described as surreal. Then, I get an ultrasound of both breasts. (I’m glad they’re thorough and I can see the need to compare.) The doctor attempts a fine needle aspiration of the mass in my boob, but it is so hard, he has to do a core biopsy instead. He injects a local anesthetic, makes a small incision, and uses something that sounds like a hole puncher to take out two samples. He glues the incision shut, bandages it, and sends me for chest x-rays. I get four chest x-rays.

After the x-rays, I wait with my husband and sister until a surgeon and a nurse call me in to a conference/exam room. The first thing I notice is a box of tissues and a laminated poster with an illustration of breast cancer on the table. FUCK! I think. They’re going to tell me I have breast cancer. The surgeon has me lie down on the examining table and palpates my breasts and lymph nodes. Then he tells me that he is pretty sure I don’t have cancer, but that we have to wait for the biopsy results. YAY! He also says that none of the doctors who have examined me so far have any idea what I have in my breast. CRAP.

January 18: Follow-up at the breast clinic

My sister has her final exam today. As of today, she is a nurse, so she is excused from coming along with me. I have my follow-up appointment at the breast clinic. As of today, my life could change. John drives me, and I barf into a couple of freezer bags on the way to the clinic. The meds are still having a horrible effect on me. The surgeon tells me that my biopsy does not indicate cancer. There are no signs of malignancy. HALLELLUJAH! He tells me that he has conferred with a team of specialists, and they all agree that they don’t know what I have. He gives me a referral to the department of internal medicine at my local hospital. He suspects that I have something systemic, possibly autoimmune, and he tells me that I need to be tested for a whole bunch of systemic conditions: sarcoidosis, Wegener’s granuloma, lupus, tuberculosis, vasculitis. If those tests come back negative, he will take me on as a breast patient again, but until further notice, I am no longer the responsibility of the breast clinic. He tells me to feel free to contact him if I get worse, but that I really should push the internal medicine department to see me ASAP.

January 28: Emergency visit to the breast clinic

I spent the weekend in agony. My left boob decided that it hadn’t been swollen enough, and it ballooned to twice its size. I took pictures. My healthy (?) right boob is its normal tiny size. My left boob is huge by comparison. My sister, nurse Connie, sees the pictures and comments on how shapely, full and pretty my sick left boob looks. Thanks. I’d rather have it back to its natural state of post-lactation deflation. I get an emergency appointment at the breast clinic because of this new swelling and worsening pain. A different surgeon sees me and prescribes yet another round of antibiotics and a twelve-day round of prednisolone to try to reduce the inflammation. He’s sorry he can’t help me more than that.

January 30: Break down at work

My boss happens to be my GP’s wife. She comes in to my station at the hospital lab and can see that I am not okay. She is a nurse, and she knows pain when she sees it. I break down and tell her what’s going on, and she is incredibly supportive (and amazed that I’ve been coming to work). She has her husband, my GP who hasn’t seen me yet, call me first thing the following morning. She finds it unacceptable that I keep getting bounced around the system.

January 31: I see my GP

My GP has studied all my electronic chart notes from everywhere I’ve been the last five weeks. He is up to speed. He orders more bloodwork to get a jump-start on the internal medicine territory. He wants to check all the different autoimmunity markers and check inflammation markers. He says that it appears that I may have something called Granulomatous Mastitis, and that it is a very rare, benign disease. (Benign means not malignant, it doesn’t mean innocuous.) He tells me that he has never seen this before either and uses Google Scholar to show me some articles from Germany about this. He points out that the only guaranteed way to make this go away, based on a literature review, is with a mastectomy. He tells me to go home and google GM, and get back to him with what I find. I do. I find a series of medical journal articles and email them to him. He’s listening. We stay in touch by email. He gives me my blood test results (all normal).

February 6: More blood tests

The obstetrician who delivered me is my father’s best friend. My parents have been in touch with him about my case. He is 72 years old and still practicing medicine in Ecuador. I have a lot of respect for his expertise. He suggests that I have my prolactin levels measured, as hyperprolactinemia (high prolactin levels) could cause mastitis. I call my doctor, and he orders a full female hormone panel. Fast forward two days: test results normal.

February 8: A phone call and a letter from the internal medicine department

I finally get to talk to a doctor from the internal medicine department. He is a lung specialist, and he explains that the diagnostic team has had multiple conferences about my case, and they’ve decided that they have to rule out lung disease first. (What? How are my lungs connected to my breast? Please explain.) He wants me to have a CT scan of the thorax and abdomen (chest and belly). I get a letter later in the day telling me that my CT scan is scheduled for Tuesday, the 12th of February and that I need some blood work prior to the scan to make sure that I can tolerate the contrast they will be injecting into me.

February 11: More blood tests and another desperate visit to the breast clinic

I’m on a first name basis with the ladies at the lab now. I should get a frequent flyer card. I see a third surgeon at the breast clinic, a woman this time. She listens. I break down as I tell her about how the pain is getting worse. The course of steroids reduced the swelling of the soft tissue around the lesion, but the lesion itself keeps growing and getting more painful. She explains that this is autoimmune, that my body has decided that my breast tissue is the enemy and must be destroyed. She tells me that she has treated one patient with this before. (Finally! A doctor who has seen this!) She tells me that it took a long time to treat with prednisolone and methotrexate, but that it is under control with ongoing treatment. That scares the hell out of me. I don’t want to be in treatment long-term. I tell her that I cannot go on living with this or with the prospect of living with this long-term. Could she just cut it out, please? She tells me that my breast is too inflamed for surgery, and that the lesion is so big (7 by 8 cm), that we’re not looking at a lumpectomy. She’d have to do a mastectomy, but only after the inflammation subsides and she gets the go-ahead from the internal medicine department. She prescribes even stronger pain meds and Prilosec to prevent ulcers from the pain meds. She can’t believe that I haven’t been seen by internal medicine yet.

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About A.K.

I am: dreamer, mother, wife, daughter, sister, friend, writer, reader, musician, artist, teacher, translator. I am a citizen of the world. These nations are my home: Denmark, Ecuador, USA, Canada, France and Germany. I believe the purpose of life is to love, laugh and learn. I am over being upset for getting this very rare disease: Idiopathic Granulomatous Mastitis. Forgetting all the pain and havoc is tempting, but I will honor the lessons it brought and release my resentment. This blog is my way of coping and reaching out to others who may be going through similarly unfair and bewildering experiences.

2 responses »

  1. Phillip Bannowsky

    Christ, it sounds like an episode from House. It’s Lupus. No, it’s mouse droppings in the barn. No it’s Granulomatous Mastitis. Just share some of those pain meds with the Doctor. Hang in there and laugh if it don’t hurt too much.

    Reply
    • Funny you should mention House. I was referred to the “Diagnostic Medicine Team.” I joked that I wanted Dr. House, until I remembered that his team invariably makes the patient worse, much worse before figuring out the diagnosis and treatment plan.

      Reply

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