Aug 20, 2014
So I finally got to meet the 3rd part of my care team - Dr Trotter, my Radiation Oncologist. She is the one who decides what my radiation treatment plan will look like after surgery. I was feeling good about our initial meeting cause Dr Taylor at the Breast canser Supportive Care spoke so highly of her.
Knowing it was all mathematically calculated (how much radiation, where etc.) I wondered if she would be like the radiologists...all facts and maybe more quiet. An introvert maybe. I wasn't scared at all about the meeting cause I figured it would just be a basic "here's how it works" meeting.
Phil and I met with her on the Friday of my last somewhat traumatic chemo week. So I was a little more emotional. Adding to that emotion, was our calculation as to when radiation might be done with. It can be up to 25 treatments (16, 20 or 25 to be specific) so Phil had done a rough calculation a while back showing us all done by about the beginning of Dec. I was so happy cause I figured I'd be recovered enough to enjoy Christmas. We must have done the calculations assuming 6 chemo treatments...with the new 8 treatment chemo schedule and "rough" surgery date, radiation was looking like it could be still going through Christmas. This was a huge blow to my expectations. I actually cried when I realised this could be possible. I'd love to be done all my treatments by the end of 2014 so I can start 2015 with a clean slate...ha both figuratively and literally.
Anyways, we arrived to the Richmond Diagnostic Center (Old Children's hospital) and found our way to the canser area. After a brief wait, we were shown into a rather large room. We were met by a young woman who was working with Dr Trotter first. She asked us some preliminary questions. We've learnt to leave the detailed questions to the main doc. A short while later she gave me a gown and told me to change while she went and got Dr Trotter.
I wasn't nervous as we waited for her. But once she came in and proceeded with the exam I worried a little. I haven't been doing my self exams as rigorously as I had been so there was a little fear she'd feel something I hadn't been able to. I was esp nervous when she got to my lymph nodes - she felt them all the way up my neck. As she felt her way along up my collarbone, i wondered "what if she finds something there?". It continued as she went higher and closer to my head..."what if it spread higher?" She did the whole exam virtually silent so my mind was left to wonder. She was very thorough.
At the end of her exam she proclaimed "Feels good. Can't feel anything". There may have been 2 sighs of relief at this statement - one from me and one from Phil!
She then directed us to some chairs to sit on after the exam. When I told her I had questions she kindly asked me to tell her them all so she could address them all in her "speil" (my word not hers lol). I was very happy she had a speil as I had not really talked to anyone at length about radiation, therefore did not really have any preconceived notions of what to expect.
She started by explaining why we were going to do radiation. Basically the research supports it as a kind of "insurance policy" against the canser coming back. It's not guaranteed but research shows the survival rates etc increase with radiation (as it pertains to my case). This is esp true as soon as canser hits the lymph nodes. That was pretty much my ticket to radiation treatment. After surgery we hope for there to be no canser left. The way my progress is going that is possible in my case. Complete chemo response (ie no canser left after chemo) is achieved 25% of the time. However if there is canser present in the pathology after surgery - even just a little - radiation acts as insurance by damaging the canser cells so they eventually die off. canser may be scary, but its not very good at repairing itself like normal cells can. Even if there's been complete response to chemo, research still says there's benefit to radiation. In my case it'll be16 treatments.
So that's the why. As to the when, it's as soon as I am healed enough from surgery to put my arms above my head and touch the opposite ear (over my head) She said typically its 6-8 weeks post op. It can be as early as 4 weeks. So once we have my surgery date, it will give me an idea when we can start (and end) radiation. I asked about Christmas and she said the clinic will be closed on 25th and 26th. so if I have radiation that week, I won't go on those days and just continue till I've finished 16 rounds. If it looks like I'm going to start close to Christmas, she mentioned they may delay it till the week after Christmas so there's no interruption.
Thankfully I had already cried prior to our meeting about possibly doing radiation through Christmas so the idea of not starting till Jan didn't upset me as much as had I thought going in we'd be done by early Dec.
As for the how - once I can put my arms up comfortably, I'll get a CT scan that will take about half hour. This scan will take all kinds of info and will be fed into special software that Dr Trotter will use to plan my treatments. For treatments, I'll lay down and have a big machine move around me, but it won't touch me. It will shoot or blow radiation from both sides of me targeting the areas of interest - my chest wall and behind the collarbone in the armpit area. I won't feel anything. I won't know when its on or off (except from when they tell me). This will all take place at Tom Baker and they will give me a list of every appointment and time right at start. I will go everyday Monday to Friday and have weekends off till I complete the 16 treatments. So just over 3 weeks.
Side effects can be tiredness, but she said usually if you are already tired from chemo and surgery its just a continuation of that, or a little bit more. Possible skin discolouration - she likened it to a tan. A permanent one. A number of women at Wellspring showed me their radiation areas and many of them had red flecks of discolouration - not what I'd call a "tan" but maybe to the radiation people it is? Or maybe I'm just used to the word "tan" to mean browning of the skin....I can have some peeling (like a sunburn) and can have a little discomfort in the area.
She said 1% of women who have radiation where I will develop a cough in first 6 months because of the disruption to the lung from the radiation. If it hasn't shown itself in 6 months, it won't at all. I didn't ask more on this (like is a cough a bad thing? Permanent? Signs of something sinister?) cause i was kinda still stuck on "damage to the normal lung function". Given that 3 days prior I heard a woman almost die from chemo, I wasn't really ready for any more scary info. Lots of time to ask scary questions when we are closer to the time...or never....
She said that was the why, how, when and where. But because I was young (under 40) we should discuss the "secondary canser" risk from radiation. Well that sounds like good news.
I was still not past the 'lung cough' so I had to bite my tongue from stopping her and saying "No thanks. Bad week. Not today".
She informed me I will have a 4% higher risk than rest of population of developing secondary cansers (yes folks that's plural...) like bone (i think I paled here) lung, skin etc in area where the radiation was. This would not be breast canser but from the treatments used to treat it. Effects aren't felt till about 10 years or so later. Great! So at 5 years I sigh with relief, then at 10 years start to sweat....ug...The reason it takes so long is it would be from damage to the cells that would slowly warp and turn into cancerous cells...This is where I think diet will help alot - if I give my cells all the best nutrition and chance to heal themselves, I am hoping that will reduce the risk (she didn't tell me this - I am just using common sense which may not be applicable to canser but I am choosing to see it that way...)
4% and 1% risk may not sound horrible, but I was just not prepared to hear the whole risk part so I was pretty bummed when we left. The whole week felt like a canser reality check. This is probably part of the reason why I was so "broken" that night laying in bed.
Now that it's been almost 2 weeks since, and I've re-listened to the recording (yes we try and record all the big meetings - chemo brain is a b$%ch...) it doesn't seem as ominous so I think my frame of mind really played a part in how I initially felt.
Overall I feel comfortable with it. I like Dr Trotter - though I know now not to ask anything I don't really want to know. She's a straight shooter who explains things really well. And she's kind too. That matters to me. Cause really, all these treatments are kind of alot to process when one day you're a working mom of 2 without any health care issues, and the next you are fighting for your life against a disease most people fear and having to choose toxic drugs to do it. And try to become an expert in the span of a few weeks in all things breast canser so you can be "involved" in your own treatment.
So ya, kindness matters.
And I've been very lucky to get a team of experts who are all kind.
So I finally got to meet the 3rd part of my care team - Dr Trotter, my Radiation Oncologist. She is the one who decides what my radiation treatment plan will look like after surgery. I was feeling good about our initial meeting cause Dr Taylor at the Breast canser Supportive Care spoke so highly of her.
Knowing it was all mathematically calculated (how much radiation, where etc.) I wondered if she would be like the radiologists...all facts and maybe more quiet. An introvert maybe. I wasn't scared at all about the meeting cause I figured it would just be a basic "here's how it works" meeting.
Phil and I met with her on the Friday of my last somewhat traumatic chemo week. So I was a little more emotional. Adding to that emotion, was our calculation as to when radiation might be done with. It can be up to 25 treatments (16, 20 or 25 to be specific) so Phil had done a rough calculation a while back showing us all done by about the beginning of Dec. I was so happy cause I figured I'd be recovered enough to enjoy Christmas. We must have done the calculations assuming 6 chemo treatments...with the new 8 treatment chemo schedule and "rough" surgery date, radiation was looking like it could be still going through Christmas. This was a huge blow to my expectations. I actually cried when I realised this could be possible. I'd love to be done all my treatments by the end of 2014 so I can start 2015 with a clean slate...ha both figuratively and literally.
Anyways, we arrived to the Richmond Diagnostic Center (Old Children's hospital) and found our way to the canser area. After a brief wait, we were shown into a rather large room. We were met by a young woman who was working with Dr Trotter first. She asked us some preliminary questions. We've learnt to leave the detailed questions to the main doc. A short while later she gave me a gown and told me to change while she went and got Dr Trotter.
I wasn't nervous as we waited for her. But once she came in and proceeded with the exam I worried a little. I haven't been doing my self exams as rigorously as I had been so there was a little fear she'd feel something I hadn't been able to. I was esp nervous when she got to my lymph nodes - she felt them all the way up my neck. As she felt her way along up my collarbone, i wondered "what if she finds something there?". It continued as she went higher and closer to my head..."what if it spread higher?" She did the whole exam virtually silent so my mind was left to wonder. She was very thorough.
At the end of her exam she proclaimed "Feels good. Can't feel anything". There may have been 2 sighs of relief at this statement - one from me and one from Phil!
She then directed us to some chairs to sit on after the exam. When I told her I had questions she kindly asked me to tell her them all so she could address them all in her "speil" (my word not hers lol). I was very happy she had a speil as I had not really talked to anyone at length about radiation, therefore did not really have any preconceived notions of what to expect.
She started by explaining why we were going to do radiation. Basically the research supports it as a kind of "insurance policy" against the canser coming back. It's not guaranteed but research shows the survival rates etc increase with radiation (as it pertains to my case). This is esp true as soon as canser hits the lymph nodes. That was pretty much my ticket to radiation treatment. After surgery we hope for there to be no canser left. The way my progress is going that is possible in my case. Complete chemo response (ie no canser left after chemo) is achieved 25% of the time. However if there is canser present in the pathology after surgery - even just a little - radiation acts as insurance by damaging the canser cells so they eventually die off. canser may be scary, but its not very good at repairing itself like normal cells can. Even if there's been complete response to chemo, research still says there's benefit to radiation. In my case it'll be16 treatments.
So that's the why. As to the when, it's as soon as I am healed enough from surgery to put my arms above my head and touch the opposite ear (over my head) She said typically its 6-8 weeks post op. It can be as early as 4 weeks. So once we have my surgery date, it will give me an idea when we can start (and end) radiation. I asked about Christmas and she said the clinic will be closed on 25th and 26th. so if I have radiation that week, I won't go on those days and just continue till I've finished 16 rounds. If it looks like I'm going to start close to Christmas, she mentioned they may delay it till the week after Christmas so there's no interruption.
Thankfully I had already cried prior to our meeting about possibly doing radiation through Christmas so the idea of not starting till Jan didn't upset me as much as had I thought going in we'd be done by early Dec.
As for the how - once I can put my arms up comfortably, I'll get a CT scan that will take about half hour. This scan will take all kinds of info and will be fed into special software that Dr Trotter will use to plan my treatments. For treatments, I'll lay down and have a big machine move around me, but it won't touch me. It will shoot or blow radiation from both sides of me targeting the areas of interest - my chest wall and behind the collarbone in the armpit area. I won't feel anything. I won't know when its on or off (except from when they tell me). This will all take place at Tom Baker and they will give me a list of every appointment and time right at start. I will go everyday Monday to Friday and have weekends off till I complete the 16 treatments. So just over 3 weeks.
Side effects can be tiredness, but she said usually if you are already tired from chemo and surgery its just a continuation of that, or a little bit more. Possible skin discolouration - she likened it to a tan. A permanent one. A number of women at Wellspring showed me their radiation areas and many of them had red flecks of discolouration - not what I'd call a "tan" but maybe to the radiation people it is? Or maybe I'm just used to the word "tan" to mean browning of the skin....I can have some peeling (like a sunburn) and can have a little discomfort in the area.
She said 1% of women who have radiation where I will develop a cough in first 6 months because of the disruption to the lung from the radiation. If it hasn't shown itself in 6 months, it won't at all. I didn't ask more on this (like is a cough a bad thing? Permanent? Signs of something sinister?) cause i was kinda still stuck on "damage to the normal lung function". Given that 3 days prior I heard a woman almost die from chemo, I wasn't really ready for any more scary info. Lots of time to ask scary questions when we are closer to the time...or never....
She said that was the why, how, when and where. But because I was young (under 40) we should discuss the "secondary canser" risk from radiation. Well that sounds like good news.
I was still not past the 'lung cough' so I had to bite my tongue from stopping her and saying "No thanks. Bad week. Not today".
She informed me I will have a 4% higher risk than rest of population of developing secondary cansers (yes folks that's plural...) like bone (i think I paled here) lung, skin etc in area where the radiation was. This would not be breast canser but from the treatments used to treat it. Effects aren't felt till about 10 years or so later. Great! So at 5 years I sigh with relief, then at 10 years start to sweat....ug...The reason it takes so long is it would be from damage to the cells that would slowly warp and turn into cancerous cells...This is where I think diet will help alot - if I give my cells all the best nutrition and chance to heal themselves, I am hoping that will reduce the risk (she didn't tell me this - I am just using common sense which may not be applicable to canser but I am choosing to see it that way...)
4% and 1% risk may not sound horrible, but I was just not prepared to hear the whole risk part so I was pretty bummed when we left. The whole week felt like a canser reality check. This is probably part of the reason why I was so "broken" that night laying in bed.
Now that it's been almost 2 weeks since, and I've re-listened to the recording (yes we try and record all the big meetings - chemo brain is a b$%ch...) it doesn't seem as ominous so I think my frame of mind really played a part in how I initially felt.
Overall I feel comfortable with it. I like Dr Trotter - though I know now not to ask anything I don't really want to know. She's a straight shooter who explains things really well. And she's kind too. That matters to me. Cause really, all these treatments are kind of alot to process when one day you're a working mom of 2 without any health care issues, and the next you are fighting for your life against a disease most people fear and having to choose toxic drugs to do it. And try to become an expert in the span of a few weeks in all things breast canser so you can be "involved" in your own treatment.
So ya, kindness matters.
And I've been very lucky to get a team of experts who are all kind.
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