Apr 09 2010
(continued from this entry) We made the appointment that day with the specialist for a time early the following week (the 9th of March), since we weren’t inclined to move slowly now that we knew it was something quite strange and possibly concerning.
The specialist we saw on the 9th only did a palpation of both breasts on the initial visit, noting the lump on the right side and asking me about it. I said I’d noticed that one there for six weeks or so, but it wasn’t hurting like the one on the left side was. He expressed strong concern about the masses being cancer, which we were initially irritated about because he seemed to be ignoring for a potential larger issue the very obvious infection signs from which I was acutely suffering. Overall he was one of the stereotypical surgeons with poor patient empathy, and also seemed quite concerned about working with self-pay patients. His continuing to focus on the money issues combined with his difficulty in interacting with patients actively involved in their own self-care made us pretty sure that regardless of what he said the problem was, we’d want a second opinion before taking action.
He put us in touch that day with a cancer advocate associated with the hospital; she was nice enough but again assuming the diagnosis was already present when I hadn’t even had an ultrasound yet. (We called them later but found out we couldn’t move through the system until we had an official diagnosis, which we couldn’t get without more information.) We scheduled the ultrasound but then un-scheduled it when we realized we weren’t going to be doing the majority of our visits through this surgeon’s office. We got a preliminary ultrasound affordably from a local radiology chain the next day. Nevertheless, we went back in to the same specialist that Friday the 12th to have the swollen area drained and samples taken to test.
They removed 2 syringes of fluid, over 100 mL. The first syringe was a clear yellow fluid that the surgeon said looked like cyst fluid. The second syringe he pulled was tinged with blood. This was one of the not-good signs, bloody fluid is often a sign of malignancy. After that he decided to send off what he had for testing and not to drain any more fluid until more testing was completed. I was quite displeased with this decision since I was in massive amounts of pain from the pressure of the fluid under the skin even with pain medication. (It was also a Friday afternoon and we’d overheard the nurses talking about him being the last one there and waiting on him to clean up before they could leave; we think this played a part in his decision to delay further draining.) He also ordered a mammogram.
I spent the weekend ramping up anxiety over the mammogram. Everything I’d read and heard about it said that the breast had to be as flat as possible to get accurate scans, and the left breast was at the point of turgidness where there was NO squish. None. It wasn’t just a little taut, it was an overfilled balloon. Since I knew it was filled with fluid, I kept imagining where the fluid could go (nowhere except another inappropriate body part) and exploding breasts, and all sorts of hyperbolic nerve-wracking images. The mammogram was scheduled for Monday afternoon, with the ultrasound to be scheduled after the mammogram was completed. Monday morning we were on the phone, determined to cancel the mammogram if we didn’t get our concerns heard.
By this time I was very sick, so I gave permission over the phone for Nathan to speak for me. He spent the next two hours playing bureaucratic roulette as we tried to get someone to recognize that this wasn’t a normal situation and a mammogram sounded like a really bad idea. We finally got through to an actual radiologist, who of course responded with “Wait, she’s got a large fluid cyst? No we won’t do a mammogram, schedule the ultrasound.” Other than my awesome primary care physician, who couldn’t do much other than prescribing the pain medication, this was the first time we started to feel like I had a chance of getting good care in this experience, whatever it turned out to be. The ultrasound was scheduled for Tuesday (March 16th), along with a biopsy, and they reassured us that they did understand that the area needed draining as well.
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