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Monthly Archives: February 2013

Passing the buck again

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Dr. Endo called me back this morning! I was overjoyed! 24 hours is not a bad response time. He is releasing me from his care and sending me on to the country’s premiere breast surgeons in Rigshospitalet. He did more research and made some phone calls until he found somebody in Denmark who has seen this before more than one time. I am not getting my referral to the provincial breast clinic after all. I’m getting a referral to the country’s top medical center, where they know what this is! Now, all I have to do is wait for them to send me a letter calling me in for an appointment. Scratch that. I’m not waiting. Dr. Endo told them they need to get in touch with me fast, not the usual 3-4 weeks. I’m calling them this week. The squeaky wheel gets the grease.

Thank you, Dr. Endo. I know that you genuinely care for my well-being. I appreciate your research on my behalf. Sending me to the breast clinic in Rigshospitalet is the right thing to do. You’re passing the buck to its end destination, to the people who really know how to slice it, dice it, spice it and stuff it. Sorry I made that snarky comment about you wanting to treat me with long-term meds so you could publish an article about treating this rare illness. Thank you for answering honestly when I asked you how these breast specialists at Rigs have treated other women with Granulomatous Mastitis…

…Even if I do NOT like the answer: “This is a chronic disease, and the doctors at Rigs have treated all the previous cases with medicine. This is not something you cure, it is something you manage.”

GAK!

Wait a minute! These are surgeons! They’re supposed to be scalpel-happy. My GP says that his review of the medical literature shows that a mastectomy has a 100% cure rate. I have read message boards from an online GM support group, blog entries from GM patients and medical journal articles. They all say that medical treatment has at best a 50-70% chance of working. These women write about how the GM flares up when they taper off the meds and comes back bigger and better when stop the meds. They write about how horrible the side effects of long-term prednisone and methotrexate treatment are. A number of these women have gotten fed up after years of misery and relapses and have opted for mastectomy. Then they write about relief, finally!

Granted, some women do get cured, but (not to sound overly pessimistic here) I’m one of those medically unlucky souls. I’m a bit of a lemon, made on a Monday (sorry Mom and Dad). I’ve been through too much chronic illness already. I don’t want to be a chronic patient. I want to go in, get the chop-chop, come out, recover, and move on with my life. I can physically cut out this particular disease and get it overwith. These medications can create new illnesses and exacerbate my current ailments. I don’t need more constant doctors’ appointments. It’s probably also cheaper for the health care system to treat this swiftly with surgery.

And I’m not just looking for a creative way to get a free boob job! I am perfectly happy with my little boobs, except for this stealth attack. Heck, I’m toying with the idea of skipping reconstruction altogether. It seems like a lot of extra pain and trouble. I’m going to have to think long and hard about that one before I commit to a decision. I just want to be healthy. I want to be someone who doesn’t have to go for follow-up check-ups and blood tests all the time.

I want to say, “Yes, I HAD granulomatous mastitis, but I’m fine now and it’s never coming back. It sucked. I had to chop off my boobs, but I’m cured.” I DON’T want to say, “I have granulomatous mastitis. It is a chronic illness, and it is controlled with medication. It flares up once in a while, but I’ve lived with it for years. I still have my original breasts, but I also developed osteoporosis, diabetes, cushing’s syndrome, heart disease, and I catch every infection under the sun.” They’re just breasts! They are optional, not essential to the body’s survival. I am not going to poison my body to keep breasts that are trying to self-destruct.

My medical vocabulary in Danish is accidentally poetic

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I called the endocrinologist in charge of my case this morning. Let’s call him Dr. Endo. Things took a turn for the worse over the weekend, and I wanted to find out how soon he can see me, give me my final test results and refer me to the breast clinic for surgery. Incidentally, I see a pattern here. I can count on this granulomatous mastitis to start acting up on Friday night and proceed to full-blown tantrums by Saturday and Sunday. I get it, GM. You’re here. You’ve hijacked my life. I’m counting the days until I can cut you out of my life. Dr. Endo’s receptionist promised she would have him call me today. It’s 17:30, and still no phone call.

Fortunately, I had a plan B and a plan C. John called the breast clinic for me because I was crying too hard. They told him they cannot see me again without a referral from either internal medicine or my GP, because my case is out of their hands at the moment. I got angry enough to stop crying and called my GP, who agreed to see me at 15:00. I emailed him prior to consultation:

  • “Dear GP: I have an appointment with you at 15:10 today. I am doing much worse. The pain in my breast is worse, there is more swelling and redness. I now have a hard and painful lymph node in my left axilla. The diagnosis is confirmed as granulomatous mastitis. My CT scan from 12-02-13 also showed some small suspect masses in the liver, uterus and ovary. Dr. Endo suggests long-term medical treatment, but I cannot handle that. I want surgery as soon as possible, and wish to deal with this quickly. I want to know if I can have a localized steroid injection at the inflammation site, or perhaps intravenous steroids. The surgeon in the breast clinic is willing to do a mastectomy once the inflammation is somewhat reduced. I am in unbearable pain, and I am very scared and worried. This is affecting my life in every way, and I just want this to be over so I can get my life back. I hope you can give me a new referral to the breast clinic. Jeg orker ikke en langvarigt medicinsk behandling.”  (Translation: I cannot cope with and cannot be bothered with a long-term medical-pharmaceutical treatment.)

My GP confirmed that my boob looks worse, and he could clearly see the swollen lymph node in my armpit. It looks like I have a bean in there. He agreed to give me an intramuscular injection of prednisolone. Yay! A steroid shot! (Remind me not to go to the gym anytime soon.) I had this idea that he could inject steroids directly into my boob, but he said the deltoid muscle, just below my left shoulder, was as close to my boob as he was willing to inject. He reassured me that this one-time shot would not cause such bad side effects as taking the pills. He also showed me my latest blood test results: all normal, except for a slightly elevated marker for inflammation and very low hemoglobin levels. What a surprise! Every blood test I take shows worsening anemia. I cannot take my iron pills. I haven’t taken them since this started because my stomach is a mess. At the rate I’m going, I may just ask for an iron injection when I see my GP again on Thursday. He wants to see if the steroid shot has any effect, and then he will refer me back to the breast clinic for surgery. He knows me. He knows my history. He’s been treating me for the past four and a half years. He knows that long-term medical treatment with prednisolone and methotrexate is all sorts of wrong for me. He knows I’ll do better getting a mastectomy. He also said that he doubts the other findings on the CT are related to my boob. They are probably nothing serious, and we shouldn’t worry about them at the moment. So, I’m going to stop worrying about them. I can’t feel anything from them, and come on! How much can go wrong with me at one time? Seriously!

I asked my GP if having been recently injected with prednisolone and being anemic could have a negative effect when I undergo my surgical intervention. Actually, I mixed up my Danish vocabulary and asked him: “Kan det påvirke mig når jeg får mit kirurgisk angreb?” He smiled and told me that he liked my word choice, as it is very fitting and a bit poetic in this situation. And, no, there should be no negative effect. Wait a minute! “Angreb” means attack. “Indgreb” means intervention. Doh! (Slap forehead and groan.) They sound almost the same. It turns out I asked whether these conditions could have a negative effect when I undergo a surgical attack! I still amaze myself with my ability to make unintentionally amusing mistakes in Danish. So, yes. This is a surgical attack I am going in for, not just a surgical intervention.

A retroactive timeline through the medical labyrinth, part 2

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February 12: CT scan

A lovely Norwegian radiologist prepares me for my CT scan. She attempts to insert the needle that will keep the contrast coming during the scan. After two tries, she calls a nurse who tries three times before deciding to call a nurse-anesthetist to give it a whirl. The nurse-anesthetist gets the vein on the third try. I joke about feeling like a voodoo doll, and go home black and blue and sore.

February 19: Two months after this started, I finally have an appointment at internal medicine. More blood tests.

I spend four hours at the hospital today. I finally meet the internal medicine specialists who have been discussing my case. Better yet, they finally see me! I am no longer an academic exercise on paper to them. I am a person in a lot of pain, and I make it clear that I want my life back. The lung specialist (I will call him Dr. Lung) informs me that the CT scan shows that there is nothing wrong with my lungs, (I could have told him that without a CT scan) but that he wants to do a Mantoux test to rule out tuberculosis and some other blood tests to rule out other diseases. He sends me to the lab, where I fill 12 vials with blood. If your poured all that blood together, you could fill one of those pretty little porcelain tea cups. Do these people not know that I am anemic? It can’t be good to take so much blood out of someone who’s anemic! I end up feeling very weak and woozy for the rest of the day and the following day.

Dr. Lung shows John and me a medical journal article about granulomatous mastitis. He has highlighted relevant sections for us. He admits that this is out of his area of expertise, but he would like to examine me. It’s actually rather funny and awkward. I feel like I’m being felt up in a hall closet at a junior high dance. He tells me that he is not used to palpating breasts for medical purposes as he palpates my breasts. “I can definitely feel that there is something there,” he says. (Um. Thank you for validating what I’m going through?) I show him the pictures I’ve taken on my phone as I’ve monitored the progress of this disease. He asks me if I would mind sending them to him for medical purposes, so they can go in my file. Sure. Why not? Wait a minute, did this doctor just ask me to text him my tittie pics? When I do text him my pictures two days later, I can’t help but feel a bit naughty. This is just weird.

I wait another hour and the endocrinologist comes to see me. I wrote about what he told me in a previous entry. He wants to treat this the slow and painful way. I point out medical journal articles that show that mastectomy gets rid of the problem. He thinks mastectomy is too drastic, but tells me that he is willing to listen to my ideas for treatment when I see him next week after my blood test results are ready. At least he agrees that I have a certain right to self-determination over my body, and that he will give medical advice, but will not force any treatment on me. And he wants my tittie pics too.

February 22: Final appointment with Dr. Lung: I don’t have tuberculosis.

Dr. Lung informs me that he is no longer in charge of my care, as I don’t have tuberculosis or anything else wrong with my lungs. He tells me that my case is medically fascinating, and that the endocrinologist will be in charge of my care from now on. He agrees with me that surgery is the quickest path to recovery. He goes over my CT results in detail. They show a severely inflamed breast with an enlarged lymph node in the armpit. There is an abscess under the nipple. (Great, there is diversity in my pathological breast tissue.) The lungs look good, as do the bones, kidneys, pancreas, intestines and stomach. There is a small 12 mm lump on the top right lobe of my liver. There is also a 9 mm funny-looking lump on my uterus and a cyst on one ovary. I should have my gynecologist check that out as soon as possible, and I need a liver ultrasound, but it’s probably nothing, he says. I agree. A CT scan will pick up some strange lump or other on almost everyone! Good bye, Dr. Lung. Should I feel weird that you have my tittie pics?

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.

PAIN, Frustration and Desperation

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I haven’t written in a week. I’ve been in too much pain to write. How ridiculous is that? Too much pain to write. This pain has lasted over two months now, and it is only getting worse. Just when I think I have reached the limits of unbearable, it intensifies. My breast is even more swollen, lumpier, more puckered, and an angry fuchsia color. I screamed in the shower this morning when I washed my underarm. The pain is there now too. There’s a hard, swollen lymph node in my underarm. It is painful and clearly visible. I cry a lot. Yup. Just like a child in pain. It took all my self-control to keep from crying in class last week. I don’t know how I made it through work. Thank goodness I only work one shift a week.

I feel like the doctors in charge of my case are not grasping the urgency. Tests and appointments are scheduled one or two weeks in the future. The internal medicine specialists and the breast surgeons keep passing the buck to each other. They are playing ping-pong with me. One of the breast surgeons looked me in the eye and told me that they can’t help me because what I have is not a breast disease, per se, but a systemic condition that falls under the domain of internal medicine. Um. Excuse me! This is in my breast. How is it not a breast disease? And aren’t you breast specialists? Shouldn’t you be treating me? He said that this is such an unusual disease and they haven’t seen it before, so they are not comfortable treating me. WTF!?!?!?!?!? He told me that only about 200 cases have been described in the medical literature worldwide since Granulomatous Mastitis was first described in 1972. I have better odds of winning the lottery.

The internal medicine specialist, an endocrinologist, wants to treat me with medicine. He’s willing to give it a go, experiment on me, play with the unknown. He suggests a minimum of twelve months on prednisolone, with some methotrexate thrown in for good measure. Yes, just kill my immune system, why don’t you! He told me not to worry about the side effects, because he will see me every two weeks to monitor for diabetes and Cushings. He’ll monitor my bone density and give me other medicines to counteract or prevent the horrible side effects of treatment. Mind you, he’s never tried this before, but he’s done his research. He’ll send me for a monthly breast ultrasound at the breast clinic, and he wants to photograph my boobs at every appointment to track progress. He also told me that he doubts my granulomatous mastitis is related to two other autoimmune conditions I have (Hashimoto’s thyroiditis and pernicious anemia). He said that he doesn’t think it’s autoimmune. “It’s idiopathic. There is no explanation.” So, if he doesn’t think it’s autoimmune, why does he want to treat me with drugs that suppress my immune system? I suspect that he wants to write a paper about me and get published in the medical literature. I am not signing up for 12+ months of torture in the name of science. I want a quick and permanent solution.

I think he means well, that he has a misguided notion that it would be a pity for me to lose my boob. I am not willing to fight this hard to hang on to some breast tissue gone rogue. I want it out of my body, and I want it out now. If this were my leg or arm or some other part of my body that I actually need, I would fight to keep it. It’s a breast. It was pretty. It was functional. It’s done its duty: nursed my three kids. It’s sick now, and I want this disease out of my body. I don’t want to try to cure it and live with horrible side effects and the very high potential for relapse. I want a mastectomy. I’ll have my life back in six weeks. I am barely functioning. My husband has taken over for me. My kids are tired of mommy being sick. I am desperate, and only drastic measures will do. I can be well in six weeks after a mastectomy or I can be a sick patient for over a year. Bye-bye boobies it is.

The Pity Party in the Chamber of Imagined Horrors

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The Pity Party in the Chamber of Imagined Horrors

I latched on to the possibility of having breast cancer. I mean, a doctor doesn’t mention something like that without good reason, right? They wouldn’t want to worry me needlessly, I’m sure. Sunday, December 23 was a total pity party. Why me? What if I die? How much time will I have? I am cursed with a photographic memory. I remember everything I read. I have read about inflammatory breast cancer, and I knew that the odds are not good.

I started making contingency plans. How can I make sure my kids will remember my love for them? How can I make sure my youngest remembers me at all? How will John, my husband, fare as a single dad? Can I do anything to help him find a new wife who will be a loving stepmother to our kids? I realized that I am not afraid to die for myself. I am afraid to leave my children motherless.

John is my polar opposite. He is steady, solid as an oak tree, and almost unshakable. He tried to coax me out of the chamber of imagined horrors, so I worried about the best case scenario instead. Okay, so if this is cancer, I’ll have to go through surgery, chemotherapy and radiation. I’ll lose my breasts and my hair. I’ll throw up all the time. I’ll have no energy. It sucks, but I can live with that. He reassured me that he would still love me and find me beautiful when I became bald, boob-less and barfalicious.

Pain and self-pity aside, there was a family Christmas party the 24th. I made up my mind to suck it up, be positive and have a great time with my family. Act healthy. Act happy. Act calm. It may be our last Christmas together, so it better be a good one. There were so many perfect moments, and I made sure to get photographs with my parents, my sisters, my nephew, my husband and my kids. I’m usually the one who takes the pictures, but this time I overcame my natural urge to hide behind the camera. Faced with mortality and/or imminent disfigurement, I better leave some happy, smiley pictures for my kids. Ruminations on pain, disease and mortality would have to wait until after the holidays.

Two blogs that explain things better than I do

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I am linking to two excellent blogs that deal with a lot of the same things I am going through. The first one is: http://mynewlifewithgm.wordpress.com/.

Amanda has already written and linked to a wealth of information about granulomatous mastitis. You want the detailed medical info, read her blog!

The second is a blog with a very similar name to my blog: http://byebyeboobies.net/

Celeste blogs about her experience with breast cancer and mastectomy. You want the details on mastectomy, read her blog!

Both ladies are incredibly brave and articulate. They have completely different writing styles, but their writing is raw and honest. I have gained information, comfort and inspiration from their blogs. They have the nitty-gritty, whereas I am just writing about what is happening to me and about my reactions.

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