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Why I Am Considering Mastectomy Now That I’m Feeling Better

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Why do I still want to chop my boob off even though I am feeling better, the inflammation is significantly reduced and the pain is minimal? Am I nuts? No! I have two shrinks on record who have proclaimed me sane and can vouch for me. They can corroborate that this is not a crisis reaction, but a rational and logical decision, albeit based on fear. What am I afraid of? I am afraid of developing recurrent flare-ups. I am afraid of having this illness drag out for years. Most women with Granulomatous Mastitis have recurrences for years. It is not uncommon for the disease to last two years or more. I know I wrote that I would wait this out and give it a year, but, let’s face it. I am not a passive person, therefore I am fundamentally ill-suited to being a long-term patient when the possibility of taking decisive and immediate action exists. To thine own self be true!

I have been a compliant patient. I have tried long-term antibiotic and corticosteroid therapy, even though I was not convinced of the actual need for antibiotics and I wanted to avoid the negative side effects of prednisolone. I have been referred to a rheumatologist, and he wants me to try methotrexate. He argues that it is preferable to prednisolone because it is a steroid-sparing agent. It dampens the inflammation response without the most undesirable side effects of prednisolone (bone loss, Cushing’s syndrome, weight gain). Basically, it spares me all the problems I want to avoid and controls this disease, BUT…

…Methotrexate has some very undesirable side effects of its own. It boils down to choosing the lesser of two evils in a situation where the cure is worse than the disease and can lead to more health problems. So far, I have gotten side effects from every single medication I have taken. Therefore, I cannot naively and optimistically expect that it will be any different with methotrexate. Follow this link, and if these side effects don’t scare the bejeezus out of you, please let me know!

This is the point where I say stop. No way. I have considered the pros and the cons, the risks vs. benefits. I am not subjecting my body to methotrexate. It may be a miracle drug for rheumatoid arthritis patients who need their limbs and dexterity to be functional or for cancer patients who need a shot at survival. It may have even helped a few women with granulomatous mastitis, but it is not for me. I’ve said it before. I do not need my boob. It is not essential for my daily functioning. I’d rather cut it out than take yet another drug that will impair my daily functioning. I am not an advocate of hanging on to non-essential rogue body parts just for the sake of keeping my body “whole,” if it means I have to poison my whole body in the process. This drug is so toxic, that at the beginning of treatment, I would have to have blood tests every two weeks to monitor its toxicity and make sure my liver and kidneys don’t shut down. It will cause hair loss and suppress bone marrow function, which will lead to a reduced blood count. Honestly, isn’t it just a hell of a lot simpler to chop off the damn boob already? Enough!

Now is the perfect time to do it. The inflammation is under control. Surgery à chaud is not recommended, which is why I was denied surgery when I was having flare-ups. As I reduce the prednisolone, I notice that the pain and inflammation are threatening to return. I am certain that I will have another full-blown flare-up once the prednisolone is out of my system, which is what has happened the last few times. If I have another flare-up, I’ll need to take prednisolone again before I can have surgery, so that means one more round on these odious meds. It also means even more time lost to being in debilitating pain, so I’d like to skip that step altogether.

I also have practical considerations. I have a ten-week clinical rotation starting in August. Sometime in October, I have to start my thesis. Graduation is in January, and I can (in theory) start a full-time job as a certified occupational therapist in February. I am going to be either sick and in treatment, or in recovery from surgery (and possibly going through the reconstruction process) from now until February anyway. It’s a matter of choosing which uncomfortable and disruptive situation is more compatible with my plans. Being sick and in treatment means diminished productivity, uncertainty, frustration and prolonged suffering. And at the end, I’ll have the mastectomy anyway. This will delay my entry into my career, not to mention the negative impact it will have on my family.

If I have the mastectomy within the next four weeks, I will be in recovery during my clinical rotation. This works out because this rotation is a desk job as a case worker. I get to work in the administrative end of occupational therapy, which under normal circumstances would bore me to tears, but it’s the only way to make this work for me now. Instead of going to multiple appointments with different specialists, I’ll be going to surgery follow-up appointments, which will be fewer. I may even be able to get the surgery at a hospital closer to home, which would make my life even easier. There was one surgeon at the breast clinic in the provincial hospital who was on board and willing to perform the mastectomy if given the go-ahead by internal medicine.

If I choose immediate reconstruction with expanders, I will have more appointments, but they will be shorter and targeted. There will be a clear goal and a timeline with an end in sight and a measurable, tangible and predictable result. I am aware that there is a risk of complications, but come on! How unlucky could I really get? This is a gamble I am willing to take. I could also have the mastectomy and wait until February to begin the reconstruction process. This way, I can focus on my studies and write my thesis in peace.

The medical journal articles I have read about mastectomy as a treatment for granulomatous mastitis have shown a 90 to 100% success rate. The first thing my GP said to me about this disease is that mastectomy is the only sure-fire way to get rid of it. I want to get rid of it. My current breast surgeon at Rigshospital (whom I affectionately refer to as my good Boob Doc) has argued for a conservative treatment plan. I see her as a skilled and empathetic clinician, I respect her judgement, and I am sure that she wants to provide the best care possible. I’ve done it her way so far, and I recognize that I am getting better. However, because of 1) the likelihood of recurrent flare-ups, 2) the negative consequences of long-term treatment with corticosteroids, and 3) my refusal to take methotrexate, I need to have a serious talk with her now about doing it my way. I hope she listens, and I hope that my left boob will be part of Rigshospital’s pathology lab tissue collection by next month.

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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.

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