Since October I have been wading through what started as, what I hoped was the process to rule out any health issues. I never ever dreamed I would end up where I am. This post will be long to bring me up to date, somewhat. Then I hope to dig into a few topics later and do more frequent updates to avoid these long posts.
I am a healthy 42 year old female so when I mentioned to my doc that I’ve had some changes and pain in my breasts I wasn’t worried. I was more like ok let’s just get this checked out. I mean, we all know pain isn’t a sign of cancer and we all look for lumps.
First, I must step back and say this process has been everything from frustrating all the way to infuriating. I had many delays in just scheduling to get my, routine, mammogram screening. This was in part due to waiting for past films to be sent and processed into the system for the radiologist to compare.
I went in for pain and discomfort to the right breast. When I arrived I found out that my films, which we waited on, would not load into the system. Someone was kind enough to write a note about the issue with the films but that was as far as it got. A week later I was called back in to look at my left breast and I insisted there must be an error since I was concerned for my right breast. They insisted it was my left and we went through the scheduling process again. Of course we had to delay because no one did anything other than write a note to get my previous films. When arriving for my further evaluation I had to inquire into my films. The films were still not loaded into the system. Only when the radiologist got upset did we get any action around getting the films sent again but this time sent via FedEx to arrive the following day.
The doctor was hesitant to talk to me until he could compare the films. After some urging he calmly but intensely explained what he was seeing on the film. He wanted to look at the previous films and see if the same thing was present two years ago and that would have to wait until the following day. They had called me in due to a possible lump in the left breast that needed to be magnified. No worries there since upon magnification the tissue displaced and there was no lump or density on the film. However, upon magnification the Radiologist found a cluster of micro calcifications. I won’t explain in depth but when there is a cluster it is a possible indication of rapid growth. Before leaving the Radiologists indicates that we should biopsy this area but that due to the location and depth it could be very painful and suggests a surgical biopsy with anesthesia. With my mind racing I insist that I can take the pain and we schedule the next possible needle biopsy, one week away, and I push right over the fact that he is also concerned we wouldn’t get a good sample. I just wanted this done fast so I could get back on with life and set worry aside.
Now the race of my mind is off and running. I went home and tried to remember back to Nursing school what implications the micro calcifications could possibly have for this healthy 42 year old. I found lots of info on the internet and in my books, maybe not the best use of my fraying brain. The mental race cranks up a bit more and now I wait for my films to be sent, compared and interpreted.
The following day the Radiologists informs me that the same spot of tissue that they called me back in for evaluation was on the films two years ago. No answer to why I wasn’t called back in two years ago to be further evaluated on the left side. That was good news that there was no change in that tissue spot from two years ago and the mental racing slows a bit. Actually, it they had the films to compare they might not have even called since there was no change to the tissue density over two years. Then he informs me that the films are not complete and the area of tissue containing the cluster of micro calcifications is not in the film, really come on people. There is no way to know if this grouping of micro calcifications was present two years ago and or has changed in any way. Sparks fly from the gears in my mind as he informs me that a biopsy of the cluster needs to be performed. As much as I wanted to know right now what this cluster meant I asked him about the surgical biopsy vs. needle biopsy. He insisted that the biggest reason for the surgical biopsy was to insure a good sample and avoid an issue with the needle biopsy only getting skin tissue. The location was too close to the surface and nipple area.
As the Thanksgiving holiday approached causing pauses in the work week I attempt to schedule a surgical biopsy. You can’t schedule a surgical biopsy without meeting the doctor first and then you get placed on their OR schedule. At this point I’m worried, nervous and can’t believe I have to wait so long. The first available meet and greet isn’t until 12/11/13. Did I mention this started before Thanksgiving?
I can’t wait, I’m going nuts but every turn I take I get stopped. It felt like people (medical) forget we are people and we have thoughts and emotions during this process. I tried to express my upset and disbelief about the first available scheduled appointment to my PCP. She didn’t get that not knowing and the waiting felt like it was killing me. It was calmly communicated that it would be fine to wait since it wouldn’t change my prognosis.
Here I share the generosity and understanding I gained from a fellow coworker of my wife. She has gone through the process of being diagnosis with Cancer. She understood, she felt and connected to me. She jumped right into action and in a few hours got me scheduled with a general surgeon the following day 12/5. Everyone at Lydia’s work was amazing and rearranged things so she could attend my appointment, no questions asked. Not all Medical is non feeling!
The doctor was great and really got how worried I was. He tried to settle my worries by telling us that he has seen a lot of films and what he was seeing on mine didn’t concern him. He said “I’ve seen a lot and some you see on the films and it’s clear that needs to come out now but with mine he felt it was superficial enough that it was most likely due to trauma”. Upon my level of anxiety and intensity he agreed to squeeze me into his surgical schedule sooner than later. He got me scheduled the following Monday on 12/9. Wow that is great because my first meet and great with a surgeon wasn’t even going to happen until 12/11.
On 12/9 the surgical biopsy went off without a hitch, other than the grossness of moderate sedation. Now we just have to wait for pathology, no problem. The surgeon once again reassured Lydia, cuz I was out of it, that the breast tissue looked good and healthy! Yeah! However, he also informed her that in the excised tissue they found another cluster of micro calcifications. We were told that the patho results might be back Wednesday right before closing but if not then they would be back on Thursday and we could call and get them. Ok no big deal we just have to wait till Thursday.
Nothing I could do over the next few days would calm my mind and now I had this physical reminder from the surgical incision. Instead of just mental/emotional pain I now had breast pain. I had no clue that I would be impacted by an incision. I can’t even express it in words. I “patiently” waited and called the office Wednesday evening right before close. I was reassured that the nurse would call me in a few minutes but no one said if the results were in. I wait and no call occurs so I call back and find out they have closed. The darkness of the night closes in and I wait till Thursday.
The office opening time of 8am comes and goes and I receive no call. I call at nine and I’m told the nurse will call soon. I call at 10 and I’m now told the doctor will call me and my mind breaks out of its cage and goes to high ground. I can’t wait and it’s time to be in action. I’m a nurse so surely I can go pick up my results and read them. I take off for the office and request for my results. The poor receptionist tells me “I’m sorry we can’t release those because the Doctor hasn’t signed off on them, He will call you between patients.” I make a request that sooner the better because I have to work tonight. Now I get sneaky and drive to my PCP’s office, neurotic or just plain ole in action I’m not sure. I politely inquire if they possibly received my patho report this am along with the surgeon. Bingo they did so I ask for a copy. Ummmmm they gave me a copy and clearly I don’t think they read them prior to handing them over to me.
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