Nov 15, 2014
So there we were. We got home from my apparently last oncologist appointment trying to process the 2 big pieces of information we were told. Every time I thought about the complete response, I was a bit in awe. Like this mythical thing happened to me. But it was immediately followed by the other piece of news of essentially losing part of Team Guardian Angel. Not expecting it made it worse.
If you haven't had canser, you likely won't really understand how devastating news like this can be. I know it must seem so strange that I'm not celebrating having 1 less doctor in my life considering I still have the rest of the team. But here's the thing...a complete response may be the best case for chemo. It is what they hope for going in. But it does not mean that it puts me at zero chance of re-occurrence...
Ah, re-occurence. That is like a four letter word in the canser world. I have not met one person who's gone through this journey who doesn't or hasn't feared re-occurrence. That's the thing with canser - you can be considered "canser free" but there's always a chance it can come back. And it's not it coming back in of itself that people seem to fear (at least that's not what keeps me up at night). It's if it comes back metastasised. When canser comes back metastasised there is no getting rid of it....most people live with it for the rest of their life - on treatment - and it's what ends up killing them. There's no padding that fact. For breast canser it likes to come back metastasised to lovely parts like bones, brain and lungs (other parts too but these are "common").
Last I checked, you need all those parts - they play a pretty important role in living....
If I am showing no signs of canser, how could my breast canser come back given I removed my breasts? This happens when during your original treatment a rogue breakaway cell isn't killed by any of your treatments (and it's too small to see) and travels to another part of your body and sorta hides there and grows. It can take years for it to "announce" itself again. But the chance is highest in the first 5 years. Once you pass 5 years, your risk significantly drops (but not to zero). Everyone I know in the canser world sees or saw their oncologist for this 5 year higher risk period. Why not a family doctor you ask? Because many of them are not trained to know what to look for and many don't want to b e responsible for detecting canser (since it's not their speciality - nice having a disease that even the doctors are leery of eh??)
Add to the fact that I don't even have a family doctor, and maybe it makes more sense why I was so upset.
And of course there's the question of genetics that comes into play with regard to my mind frame when processing the "no oncologist" info. My Dad had canser at 35. His mom had ovarian canser in her 60's - which did you know ovarian canser is a sister canser to breast canser? Ya, they are linked. If you are carrying the BRAC1 or BRAC2 gene mutation your risk increases significantly for breast or ovarian canser. Because there's 3 generations in a row with canser in my family, combined with how young I am (and my Dad was) AND that's it's triple negative, there is a chance it could be genetic. My oncologist sent in a referral to the genetics clinic after recommending I get tested. I haven't been yet but I am on the list to meet with geneticists in 6-12 months. I am not sure how genetics play a role in re-occurrence of the same canser (ie that affects chances of re-occurrence) nor do I want to know stats. But if I have the mutation, then I would definitely be at high risk for other cansers (I believe there's others aside from ovarian but I haven't done too much reading on this yet...)Anyways, I am not trying to depress the shit out of everyone, but having all this info in your head when being told "say bye to one of the best people to spot canser" doesn't exactly make you jump for joy.
It scared me.
My Radiation Oncologist Dr Trotter called that night. She wanted to see how I was doing post surgery. She also heard about the complete response and was calling to say she still recommended radiation, even if complete response drops my chances of re-occurrence to 15% (I really didn't need or want to know the stats but she is all stats when it comes to explaining things...) I trust my team, so I am following her recommendation. She decided to schedule my radiation prep CT scan for Dec 1. Radiation will start Dec 29. Gulp. But at least I get a nice break through Christmas. And now I had a date to work towards to get back full arm movement. By Dec 1 I would have to be able to put my arms above my head. At this point I could only put them partially back and was doing arm exercises multiple times a day to help get back the full range of movement.
After I got off the phone with Dr Trotter I started wondering what exactly a full response meant. If I still needed radiation, did it really change anything?
Up to this point, no one from the medical community seemed overly excited about the news. Neither Dr Trotter or my oncologist say much about it other than "yes, it's good news". Was I making a bigger deal out of it then it was?
And then I got a message from Nigel - my Mall Angels' fearless leader, who happens to be a canser researcher! - that emanated pure joy at my news. And with his words, hope once again bloomed in my heart:
"...from my reading of the literature, the fact that you had CPR (complete pathologic response) basically cancels out the negative impact of being triple negative. It still all comes down to probability and statistics so nothing is ever certain (and I'm just a researcher not a physician!) but the odds have been swung dramatically in your favour by your response to chemo. Sooooo happy for you!!".
His message couldn't have been better timed if he tried.
That Thursday I met with Dr Taylor (from Breast canser Supportive Care) and when I told her the news, her whole face lit up and she gave both Phil and I hugs, "cause that kind of news deserves a hug". Her and Nigel were the first in the medical community to really seem to think this was news worth celebrating. It truly helped to put my mind at ease that it may have a positive impact on my future. Dr Taylor also further explained the need for radiation which really made me feel good about my decision to still do it.
She basically explained that since there are only 3 treatments for triple negative - chemo, surgery and radiation - it would make sense that if research showed benefit of radiation that the docs would want to encourage me to do it since there is no hormone treatment to help keep the canser from coming back. They would want to use everything in their arsenal. It would probably be a different story if my lymph nodes were negative right off the bat - but they know for sure at least 2 were positive for canser. Plus given they didn't go in and remove a huge clump (15-30) I'd rather be safe than sorry.
So between that reassurance and her also agreeing with what Nigel said, I left BCSC feeling very happy and at peace. Then Judit - a friend who is living with metastic breast canser (it came back 2 years after treatment) wrote me a happy note about what a blessing that news was.
Well, the 3 of them were able to fill me and Phil back up with joy and really enjoy this small victory. And it's not that I didn't appreciate any of the happy comments from family and friends previously....it's just hearing it from those who are so educated about how awful canser is and who are well aware of the re-occurrence issues and are up to speed on all the latest research, it was the "confirmation" I guess was looking for.
It was still a few more nights before we could celebrate with my favourite Guinness since I was still on antibiotics...
But finally, Saturday Nov 15, almost a month past surgery, were were able to toast to all the good news.
Surgery was done.
Infection gone.
canser obliterated.
As I posted on Facebook:
So there we were. We got home from my apparently last oncologist appointment trying to process the 2 big pieces of information we were told. Every time I thought about the complete response, I was a bit in awe. Like this mythical thing happened to me. But it was immediately followed by the other piece of news of essentially losing part of Team Guardian Angel. Not expecting it made it worse.
If you haven't had canser, you likely won't really understand how devastating news like this can be. I know it must seem so strange that I'm not celebrating having 1 less doctor in my life considering I still have the rest of the team. But here's the thing...a complete response may be the best case for chemo. It is what they hope for going in. But it does not mean that it puts me at zero chance of re-occurrence...
Ah, re-occurence. That is like a four letter word in the canser world. I have not met one person who's gone through this journey who doesn't or hasn't feared re-occurrence. That's the thing with canser - you can be considered "canser free" but there's always a chance it can come back. And it's not it coming back in of itself that people seem to fear (at least that's not what keeps me up at night). It's if it comes back metastasised. When canser comes back metastasised there is no getting rid of it....most people live with it for the rest of their life - on treatment - and it's what ends up killing them. There's no padding that fact. For breast canser it likes to come back metastasised to lovely parts like bones, brain and lungs (other parts too but these are "common").
Last I checked, you need all those parts - they play a pretty important role in living....
If I am showing no signs of canser, how could my breast canser come back given I removed my breasts? This happens when during your original treatment a rogue breakaway cell isn't killed by any of your treatments (and it's too small to see) and travels to another part of your body and sorta hides there and grows. It can take years for it to "announce" itself again. But the chance is highest in the first 5 years. Once you pass 5 years, your risk significantly drops (but not to zero). Everyone I know in the canser world sees or saw their oncologist for this 5 year higher risk period. Why not a family doctor you ask? Because many of them are not trained to know what to look for and many don't want to b e responsible for detecting canser (since it's not their speciality - nice having a disease that even the doctors are leery of eh??)
Add to the fact that I don't even have a family doctor, and maybe it makes more sense why I was so upset.
And of course there's the question of genetics that comes into play with regard to my mind frame when processing the "no oncologist" info. My Dad had canser at 35. His mom had ovarian canser in her 60's - which did you know ovarian canser is a sister canser to breast canser? Ya, they are linked. If you are carrying the BRAC1 or BRAC2 gene mutation your risk increases significantly for breast or ovarian canser. Because there's 3 generations in a row with canser in my family, combined with how young I am (and my Dad was) AND that's it's triple negative, there is a chance it could be genetic. My oncologist sent in a referral to the genetics clinic after recommending I get tested. I haven't been yet but I am on the list to meet with geneticists in 6-12 months. I am not sure how genetics play a role in re-occurrence of the same canser (ie that affects chances of re-occurrence) nor do I want to know stats. But if I have the mutation, then I would definitely be at high risk for other cansers (I believe there's others aside from ovarian but I haven't done too much reading on this yet...)Anyways, I am not trying to depress the shit out of everyone, but having all this info in your head when being told "say bye to one of the best people to spot canser" doesn't exactly make you jump for joy.
It scared me.
My Radiation Oncologist Dr Trotter called that night. She wanted to see how I was doing post surgery. She also heard about the complete response and was calling to say she still recommended radiation, even if complete response drops my chances of re-occurrence to 15% (I really didn't need or want to know the stats but she is all stats when it comes to explaining things...) I trust my team, so I am following her recommendation. She decided to schedule my radiation prep CT scan for Dec 1. Radiation will start Dec 29. Gulp. But at least I get a nice break through Christmas. And now I had a date to work towards to get back full arm movement. By Dec 1 I would have to be able to put my arms above my head. At this point I could only put them partially back and was doing arm exercises multiple times a day to help get back the full range of movement.
After I got off the phone with Dr Trotter I started wondering what exactly a full response meant. If I still needed radiation, did it really change anything?
Up to this point, no one from the medical community seemed overly excited about the news. Neither Dr Trotter or my oncologist say much about it other than "yes, it's good news". Was I making a bigger deal out of it then it was?
And then I got a message from Nigel - my Mall Angels' fearless leader, who happens to be a canser researcher! - that emanated pure joy at my news. And with his words, hope once again bloomed in my heart:
"...from my reading of the literature, the fact that you had CPR (complete pathologic response) basically cancels out the negative impact of being triple negative. It still all comes down to probability and statistics so nothing is ever certain (and I'm just a researcher not a physician!) but the odds have been swung dramatically in your favour by your response to chemo. Sooooo happy for you!!".
His message couldn't have been better timed if he tried.
That Thursday I met with Dr Taylor (from Breast canser Supportive Care) and when I told her the news, her whole face lit up and she gave both Phil and I hugs, "cause that kind of news deserves a hug". Her and Nigel were the first in the medical community to really seem to think this was news worth celebrating. It truly helped to put my mind at ease that it may have a positive impact on my future. Dr Taylor also further explained the need for radiation which really made me feel good about my decision to still do it.
She basically explained that since there are only 3 treatments for triple negative - chemo, surgery and radiation - it would make sense that if research showed benefit of radiation that the docs would want to encourage me to do it since there is no hormone treatment to help keep the canser from coming back. They would want to use everything in their arsenal. It would probably be a different story if my lymph nodes were negative right off the bat - but they know for sure at least 2 were positive for canser. Plus given they didn't go in and remove a huge clump (15-30) I'd rather be safe than sorry.
So between that reassurance and her also agreeing with what Nigel said, I left BCSC feeling very happy and at peace. Then Judit - a friend who is living with metastic breast canser (it came back 2 years after treatment) wrote me a happy note about what a blessing that news was.
Well, the 3 of them were able to fill me and Phil back up with joy and really enjoy this small victory. And it's not that I didn't appreciate any of the happy comments from family and friends previously....it's just hearing it from those who are so educated about how awful canser is and who are well aware of the re-occurrence issues and are up to speed on all the latest research, it was the "confirmation" I guess was looking for.
It was still a few more nights before we could celebrate with my favourite Guinness since I was still on antibiotics...
But finally, Saturday Nov 15, almost a month past surgery, were were able to toast to all the good news.
Surgery was done.
Infection gone.
canser obliterated.
As I posted on Facebook:
" Victory never tasted so good...."
It is great news, Cindy! Onwards and upwards!
ReplyDeleteSuch wonderful news Cindy & Phil :)
ReplyDelete