Finally Some News ... Good, I think?
Well it seems like I've been in a holding pattern circling the airport for quite some time now. It's appropos considering all the business trips I've taken this year. And the blog has been way too quiet lately. But silent no more ... I have some news!
Before I get into all that though: a sidebar. Did I mention cancer can also be confusing? Or really what I mean is that cancer care and treatment can be confusing. And while I have already noticed the inconsistency in prescribing treatment: it's almost like a dartboard sometimes even when you have the exact same diagnosis ... for example most Stage 1 breast cancers do not automatically get a chemo recommendation (unless it's a triple negative like I have), yet there are plenty of women doing chemo with ER+/PR+ and HER2+ diagnoses. And why do some get recommended for mastectomies when they could have lumpectomy and are willing to have radiation? I know sometimes it is a preference, or there are other indicators; but other times that's not the case and they are dealing with the extra challenges of that surgery and possible reconstruction (which can have its own challenges and problems).
I am more aware of this because I joined a social network for breast cancer, www.mybcteam.com. And you get a lot of stories through there as well as support from other people going through the same crap you are. It has been a godsend ... and I'm not a social network type of person. But anyway back to my news.
I went in for my CT scan on Tuesday. I didn't see my oncologist; only a rad tech who helped position me on my back unto a sliding table. My arms were above me with my elbows out to the side. Yeah, kinda like that one move in the Macarena. It wasn't much different than the MRI but easier and faster. And definitely not as loud! I had to be positioned using laser guidance and then the table moved back and forth as a rotating camera in an archway took many images. As before, I had to hold perfectly still and fortunately, was allowed to breathe (I was in one position for 20 minutes). After she finished taking the images, she skid me out of the arch and used the laser to come up with 4 markings (sometimes called tattoos) for the radiation treatments. There is one on my left side, one on my right, one on my breastbone and one on my upper abdomen (those two are just slightly right of the center of my chest). She used a red sharpie marker and put some kind of clear skin tape over the marks so it would be less likely for them to fade or come off). She called this a "simulation" and I think it marks the borders of the radiation field.
The biggest bummer about this is I am now banned from using the hot tub, pool or bathtub and cannot soak in any water. And most of you know how I love my hot tubs! She then took still camera pics and let me move and get dressed. She told me someone would call me in about a week to schedule my treatments.
So fast forward two days. It's Thursday morning and my phone rings. When I see it's Texas Oncology calling I am terrified. Why are they calling so soon? There must be something wrong the doctor saw in the CT scan. My cancer is back. There's a new tumor they've found. I may have to have another surgery! What if they have to do a mastectomy now after all I've done to save my breast!?! I was literally shaking when I finally picked up the phone with a sense of dread.
"Hello?" my voice wavered. "May I speak to Ms. Pelton, please?" the male voice on the other end queried. I hesitantly answered, "this is she" before he told me his name and that he was calling to schedule my radiation sessions for next week. "Did the doctor already see my scan?" I asked. He replied yes, he had already planned my course of treatment. I then asked him if everything was normal and that is why they are moving forward with the treatment as planned; he told me he didn't know. So, I THINK this is good news. But I'm not sure. You'd think someone would want to discuss my results with me and give me some freakin' feedback and maybe SOME PEACE OF MIND?!? But noooooo ... they seem to think leaving you hanging is more fun. I am annoyed, but hopeful, because I think that if there was something really wrong with the scan there would have been a different phone call.
And if that wasn't enough ... wait for it ... it gets better. And even more confusing. So somewhere in the course of talking about dates and times and schedules and so forth, the guy says that should work for my three weeks of treatments. WAIT A MINUTE ... Did he say three weeks? What the hell? I have always been told by everyone involved with my care that the radiation takes 6 weeks (that's broken down into 30 treatments). Even at my initial consult with the radiation oncologist, I was told 6 weeks. He did mention that there was a three week regiment he referred to as the "Canadian protocol," that I wouldn't qualify for because they only do it on smaller-breasted women. The course of treatment we talked about in the consult was definitely 30 sessions and 6 weeks (or more).
Lest it sound like I'm complaining about getting LESS radiation, let me clarify I AM NOT. It would be awesome if I only had to do three weeks! But I want to be sure the treatment I am getting is effective. And I want to make sure that this isn't a mistake (maybe a case of patient files getting mixed up). If it's right and that is what the doctor recommended, I think it is a really good sign! What it says to me is that maybe there's no sign of recurrence and the doctor thinks all I need is a lesser dose. I don't really know.
So I'm looking for more answers and explanations. I am confused. But hopeful and positive.
Before I get into all that though: a sidebar. Did I mention cancer can also be confusing? Or really what I mean is that cancer care and treatment can be confusing. And while I have already noticed the inconsistency in prescribing treatment: it's almost like a dartboard sometimes even when you have the exact same diagnosis ... for example most Stage 1 breast cancers do not automatically get a chemo recommendation (unless it's a triple negative like I have), yet there are plenty of women doing chemo with ER+/PR+ and HER2+ diagnoses. And why do some get recommended for mastectomies when they could have lumpectomy and are willing to have radiation? I know sometimes it is a preference, or there are other indicators; but other times that's not the case and they are dealing with the extra challenges of that surgery and possible reconstruction (which can have its own challenges and problems).
I am more aware of this because I joined a social network for breast cancer, www.mybcteam.com. And you get a lot of stories through there as well as support from other people going through the same crap you are. It has been a godsend ... and I'm not a social network type of person. But anyway back to my news.
I went in for my CT scan on Tuesday. I didn't see my oncologist; only a rad tech who helped position me on my back unto a sliding table. My arms were above me with my elbows out to the side. Yeah, kinda like that one move in the Macarena. It wasn't much different than the MRI but easier and faster. And definitely not as loud! I had to be positioned using laser guidance and then the table moved back and forth as a rotating camera in an archway took many images. As before, I had to hold perfectly still and fortunately, was allowed to breathe (I was in one position for 20 minutes). After she finished taking the images, she skid me out of the arch and used the laser to come up with 4 markings (sometimes called tattoos) for the radiation treatments. There is one on my left side, one on my right, one on my breastbone and one on my upper abdomen (those two are just slightly right of the center of my chest). She used a red sharpie marker and put some kind of clear skin tape over the marks so it would be less likely for them to fade or come off). She called this a "simulation" and I think it marks the borders of the radiation field.
The biggest bummer about this is I am now banned from using the hot tub, pool or bathtub and cannot soak in any water. And most of you know how I love my hot tubs! She then took still camera pics and let me move and get dressed. She told me someone would call me in about a week to schedule my treatments.
So fast forward two days. It's Thursday morning and my phone rings. When I see it's Texas Oncology calling I am terrified. Why are they calling so soon? There must be something wrong the doctor saw in the CT scan. My cancer is back. There's a new tumor they've found. I may have to have another surgery! What if they have to do a mastectomy now after all I've done to save my breast!?! I was literally shaking when I finally picked up the phone with a sense of dread.
"Hello?" my voice wavered. "May I speak to Ms. Pelton, please?" the male voice on the other end queried. I hesitantly answered, "this is she" before he told me his name and that he was calling to schedule my radiation sessions for next week. "Did the doctor already see my scan?" I asked. He replied yes, he had already planned my course of treatment. I then asked him if everything was normal and that is why they are moving forward with the treatment as planned; he told me he didn't know. So, I THINK this is good news. But I'm not sure. You'd think someone would want to discuss my results with me and give me some freakin' feedback and maybe SOME PEACE OF MIND?!? But noooooo ... they seem to think leaving you hanging is more fun. I am annoyed, but hopeful, because I think that if there was something really wrong with the scan there would have been a different phone call.
And if that wasn't enough ... wait for it ... it gets better. And even more confusing. So somewhere in the course of talking about dates and times and schedules and so forth, the guy says that should work for my three weeks of treatments. WAIT A MINUTE ... Did he say three weeks? What the hell? I have always been told by everyone involved with my care that the radiation takes 6 weeks (that's broken down into 30 treatments). Even at my initial consult with the radiation oncologist, I was told 6 weeks. He did mention that there was a three week regiment he referred to as the "Canadian protocol," that I wouldn't qualify for because they only do it on smaller-breasted women. The course of treatment we talked about in the consult was definitely 30 sessions and 6 weeks (or more).
Lest it sound like I'm complaining about getting LESS radiation, let me clarify I AM NOT. It would be awesome if I only had to do three weeks! But I want to be sure the treatment I am getting is effective. And I want to make sure that this isn't a mistake (maybe a case of patient files getting mixed up). If it's right and that is what the doctor recommended, I think it is a really good sign! What it says to me is that maybe there's no sign of recurrence and the doctor thinks all I need is a lesser dose. I don't really know.
So I'm looking for more answers and explanations. I am confused. But hopeful and positive.
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