Today I found out that I don’t have cancer. This information arose unexpectedly from my conversation with a nurse with whom I was talking about swimming pools. This is the nurse who has been dealing with my case at the breast clinic for the past 4 months. Let’s name her Nurse Jackie.
No, I haven’t seen the show and I don’t know what that character is like. My Nurse Jackie is awesome all the time. And she is one of the people I can thank for us finally finding out that it was cancer I had, and not fibroadenomas. She forced the doctor to finally do a physical exam of my breasts, since the last time a doctor agreed to touch my breasts (in a professional setting) was 7 months prior to that, when I first felt the lumps.
I had called the breast clinic this morning because I wanted to ask them if they knew if it would be fine to swim in a pool 3 weeks after surgery. Where my incisions are, there is no feeling on the surface of the skin. So if have an open wound and chlorine gets into it and starts tingling, I won’t feel that warning. So that’s why I called the clinic to see if they had an idea. They weren’t sure and they said they’d have someone call me back. Just after 16:00, Nurse Jackie called me to say that a pool was fine, but a lake wasn’t. A hot tub was also not a good idea because there’s more bacteria in hot tubs.
While I had Nurse Jackie on the phone, I asked her if she knew what is going on with my CT scan. Things have been confusing about the CT scan for the past week. Last Friday when I saw my surgeon for a follow up, he said that he’d be sending me for a CT scan. He said he had already requested it the day after my operation (2 weeks before our meeting), but I hadn’t heard from anyone at the CT office. He said he would look into it. He also told me to call his secretary on Monday to go over some other things with her.
On Monday I decided to also call the CT office to see if they even had my requisition order from my surgeon. They did not. They said it could have gotten mixed up when the surgeon’s office faxed it over. So I was to have my surgeon’s office re-fax it to them and include the confirmation sending number from the previous time they sent my requisition. I called my surgeon’s office and spoke with Barbara (also a name change) and told her the CT office hadn’t even received the requisition. [What’s the short form for “requisition” again? Req? Rec?] Barbara said that she would talk to my surgeon about it.
Barbara phoned me back on Tuesday and said that she had the results from my CT scan. I stopped her right there because I hadn’t gone for a CT scan yet. I didn’t even have a date set for a scan. She said that my surgeon had requested the scan before my operation and that I had gone for the scan a week before the surgery. What? The only medical thing I did the week prior to having surgery was that I went for a pre-op appointment, and they didn’t do any tests during that appointment, not even my blood pressure or a blood test. So I had no idea what Barbara was talking about. I stopped her right there because there’s no way that these were my results, so it didn’t matter what the results were (and I was guessing they were good because she was so eager to spill the beans to me.) I suggested that maybe they had scanned me while I was unconscious for surgery. She said that they wouldn’t scan me while I was unconscious. So Barbara had these results that she was instructed to tell me, and I was refusing to hear them because I was sure that it was impossible to have my results when I hadn’t even been for a scan. She said that she would talk to my surgeon again and find out what was going on.
Later in the afternoon on Tuesday, Barbara called me back to give the results of the bone scan. She said that the bones are all clear. She didn’t mention the CT stuff. In case you are wondering why I was getting results over the phone, well, my surgeon ok’d this info coming to me via phone. I’m guessing he ok’d this because he was sure there was nothing in the bones, because you wouldn’t give someone bad cancer news over the phone. And it saves me a trip into the city. Or, I am lying about this part. Perhaps it’s an embellishment.
Today is Thursday and I still hadn’t heard anything about the CT scan. I decided to call the CT office again to see if they had received my requisition yet. They hadn’t. So I planned on calling Barbara again, although I was dreading it because I think she is totally fed up with me. Before I called Barbara though, I realized that I needed the CT fax number again. So I called the CT office back again, this is about 10 minutes later. The woman on the phone recognized my voice from speaking with me minutes before, and told me that she had called my surgeon’s office to ask about the requisition. The person at the surgeon’s office (it was probably Barbara) said that there hadn’t been a requisition sent yet and that she needed to talk with my surgeon first.
So then the CT office is confused, and I am even more confused. I no longer wanted to phone Barbara because I didn’t want to deal with it anymore for the day.
And then Nurse Jackie suddenly phoned because she was returning my call from when I had phoned the breast clinic in the morning. And this brings us back to where I first started. I filled Nurse Jackie in on what all had been happening this week with the CT stuff and asked her if she knew what was going on and why I wasn’t getting an appointment for having a CT scan. Nurse Jackie looked at my files and could see that I had been for a CT scan 2 weeks before my operation. She said that they were using the results from that scan instead of sending me for another scan.
Ohhh, THAT scan. Yes, I had gone for a CT scan. I knew I’d been for a CT scan. But that scan was 2 weeks before surgery, not 1 week before. And it was for something unrelated, so I assumed not useful. And I assumed that they needed a scan of a larger area, not just my torso.
You see, I was doing fertility treatment in the lead up to my operation. I did follicle stimulation and egg retrieval. After the egg retrieval, my ovaries kept growing bigger when they were supposed to get smaller. My belly started growing fast, and I could hardly breathe. I ended up going to Emergency at the hospital because my breathing was so bad.
Earlier that day, I had gone to the fertility clinic to find out what was going on. They did an ultrasound and could see my ovaries were the size of grapefruits, and my belly was filling with fluid. That fluid was pressing on my diaphragm, making it difficult to exhale. I left the fertility clinic after a few hours. Once I got home though, my breathing got so bad that we were afraid to not go to the hospital.
At the hospital, they had no idea what to do with me. No one really seemed to understand all the fertility stuff. At that point I should have just gone back to the fertility clinic. The Emergency staff thought I had a blood clot in my lung. I told them that I did not have a blood clot in my lung. A good friend of mine had a blood clot in her lung once, and she has described the pain to me. I knew this pain was not that pain. But since they weren’t sure what to make of me, they sent me for a CT scan just to be safe. They scanned my chest and abdominal area. The scans showed big ovaries and no blood clots, and nothing scary (like cancer).
It turns out that I had Ovarian Hyperstimulation Syndrome (OHSS).
So now Nurse Jackie was telling me that they had gotten their hands on that CT scan from 2 weeks before surgery, and were using that to assess me. She informed me that they don’t do CT scans on legs and the head. They do do the head if the patient starts getting symptoms. So then that’s why the scan of my torso was exactly what they needed.
So this is why Barbara had a CT scan result for me. And that’s why there was confusion at all ends. I was thinking that that earlier scan wouldn’t count because I assumed that the post surgery CT scan had to be of my entire body, and so that my previous scan wouldn’t be enough for what they needed. I was wrong. Poor Barbara.
And I guess Barbara just assumed that it had been my surgeon who sent me for this CT scan, when it was actually an Emergency Room doctor.
I asked Nurse Jackie whether if because the cancer hadn’t spread past the first lymph node and therefore hadn’t spread throughout all the lymph nodes, if then there wouldn’t be cancer anywhere else. Like if the cancer would ever skip over the lymph nodes and go to somewhere else in the body instead of the lymphs. She said that it is most likely for breast cancer to go to the lymph nodes first, and once it goes throughout the lymph nodes it then goes to the bones, lungs, or liver, etc., not the other way around. I didn’t know this. No one ever told me this. Just because I had cancer doesn’t mean I know all about it. And doctors always advise patients against looking things up online because it basically just makes people paranoid and confused.
Therefore, I don’t have cancer. Nurse Jackie confirmed to me that I don’t have cancer. What an odd way to find that information out. This is also why I was so straight to the point in my previous post when I spoke of my bone scan and lymph nodes results being good. I was just confused. And I didn’t know that it meant that I most likely didn’t have cancer elsewhere in the body.
For the record, I am horrible at hints. You give me a hint, and I will not most likely not understand it or I will get it confused. Please just tell me. “Maia, you do not have cancer” is the safest bet to tell me that I don’t have cancer. Maybe I should have had an appointment with the surgeon after all, instead of this back and forth and monkey-in-the-middle phone stuff. The drive into the city would have amounted to less time and stress in the end.
See, I told you all that I wouldn’t have cancer in a month from when you guys got that initial letter! 😉
For those of you who haven’t seen what my belly looked like when my ovaries were massive and I had a belly filled of liquid, here is a photo. This was taken on June 9.2013.