Well it is that time again; my every-6-months-appointment with the oncologist to monitor my post-cancer body is over, and I can breathe for another 6 months. I kind of hate this 5 year time line in which I need to see the oncologist this frequently; it’s not like I will magically be off the hook after 5 years, although I recognize the statistical probability that it is more likely to come back within 5 years than after. Yadda, yadda, yadda.
My fellow IRL post-breast cancer patients get mammograms every 6 months, just prior to their visits with their oncologists, from what I understand. I only do it once a year; at the other 6 month point I get an MRI. I had to fight a little bit to set this up. When my doctor was explaining my schedule and telling me I’d have mammograms every 6 months, I had to push on the brakes, and ask if some other form of imaging could be mixed in, due to the fact that my first ever mammogram was a false negative. Immediately, he went into the canned speech of a mammogram every 6 months being the protocol or standard of care or standard operating procedure or whatever they call it. I was like, yeah, I fell outside of the norm in diagnoses with that false negative (only 20% get that), and we need to think outside the box for my care.
Sigh. I know the medical world, and most worlds, are constructed to come up with a plan for the majority—majority rules! But there are just some instances in which the plans need to be tailor made for an individual. I think cancer falls into that category. My doctor is wonderful; I know he cannot keep track of all the details of each of his many patients. I just wish he would put a little sticky note on the outside of my file that summarizes the big points of my case, like the false negative point, so he could remember that. It was certainly a big sticking point for me—to think all is well after that milestone of “my first ever mammogram” only to find out a few weeks later that all is extremely far from well was a real kick in the ass.
The first post treatment mammogram I had last January was not too harrowing; I’d just finished the Herceptin infusions, I’d been seeing someone in the cancer center every three weeks, so I was not worried. I was not even real concerned when I had the MRI in July; it was clear, and I was pretty sure it would be. I’ve been told one gets a little “antsy” when emerging from that cocoon of constant cancer care. Since my cocoon lasted much longer because of the year-long Herceptin treatments, I experienced less of that, I think. But I do get uptight now when the 6 month time bomb approaches.
Naturally, this time round the mammogram had to hit some bumps in the road. I went to the same facility to have this year’s mammogram as the previous year, and the building is literally across the parking lot from the cancer treatment center, I’m talking a few yards. Yet, I was asked by the technician my entire cancer history. I say to her “You know, I’ve been here before, post treatment, even! This medical group/hospital system/whatever has all of my records. I did not bring my own cancer notebook full of dates and details because common sense would imply that this facility would have all of this info.” I was annoyed because she was making assumptions that there was a long lapse in time between first mammogram and diagnoses. Finally, I just recited my general timeline, and I emphasized that 1) it was about a month between the “all clear” and the “you have Stage 3 cancer” messages I received and that 2) it was this facility that gave me that horribly incorrect “all clear”.
But getting these facts out in the open was a good thing. The technician was a fellow false negative breast cancer patient herself, which put us on the same side, she was truly sympathetic to my story. This was a great improvement over the technician last year, who kept opening my robe (I prefer to open it myself, I do not want them to touch or remove my clothing, or in this case, cheap-ass institutional covering), then stopping to yammer about breast health rather than putting my breast in the machine, letting me just stand there uncovered.
Now, I don’t know if it was the fact that I was clearly not a fan of mammograms or if the Interpreting Radiologist (the unseen person, who sends the technician in again and again to re-take the image, I guess they are the great and powerful Oz?) was truly having a difficult time getting a clear image, but images of my left breast—yes, the one that had the surgery, the scar, the one that hurts—kept having to be re-done. It was excruciating. Finally, it was decided an ultrasound was needed.
While I understand and respect the need to have a better look by getting different types of images, it was still frightening. My experience of breast cancer world is, if more images are needed, there is a problem, no matter how many times the technicians assure the patient that taking more images does not indicate a problem.
So I wait a nerve-wracking week after imaging to discuss this all with my kindly oncologist. The night before my appointment, I open my results from the Interpreting Radiologist, telling me there is an “area” that is “believed to be benign”, but I should follow up with another test in 6 months. It is a form letter, it does not take into account that I am a damn cancer patient, I have to be tested in 6 months anyway, regardless of what she saw. I know these letters are just the way radiologists are covering their asses these days, so they can go back and say, “hey we informed the patient of the findings, it’s now all on them”. I get it, but it still sucks to get that letter.
But all’s well that ends well. The visit with the oncologist reveals that blood test showed my cancer marker to be decreasing since the last test, and the offending “area” is scar tissue and/or a mole. So in other words, my status is still NED, and that “area” will probably always be a problem. So it was much worry for nothing. But I am glad it was nothing. I will always rather have the stress of extra testing with an end result of “all clear”, than skip the extra test, get bad news later, and forever wonder if finding out earlier would’ve been better. I grimace every time I see someone comment on a blog about how stressful it was for them to get an “unnecessary” biopsy, that the medical staff are over-testing (which insurance companies think is happening, even when it is not), the “agony” they went through to get the negative results. I always write back: “you want stress, try going through the week of waiting to get the classic ‘you have cancer’ answer, then we can talk about stress.” I even kind of had to say those words to myself this time round, after getting that extra test for “no apparent reason”. Better safe than sorry—wow an old cliché that is very true!