So when I saw Dr. Barth on the 16th there were a couple of lighter moments believe it or not. One was he rubbed my head. Lightly and then grinned. I think he just couldn't help himself.
He also asked my how my range of motion was with my arm. I said oh its fine and then lifted my arm out and up to my head. His mouth fell open, OH MY GOD! I was not expecting that! You can do that two weeks after surgery? You are doing really well!
Its fun to surprise your doctor but, in a good way.
Wednesday, August 18, 2010
Monday, August 16, 2010
More understanding of HER2neu testing
Since I was told I was HER2 negative I haven't read that much about it but, now that it is possibly back on the table I've gone and read like crazy which means now I want to educated others!
So here is a better explanation. HER2 is a gene that is found in all breast cells in a pair. These genes put out receptors on the surface of the cell that take in information that tell it to do things like grow. In a breast cancer cell that is considered to be HER2 positive there a more than a pair of these genes and they put up a ton of receptors. On a normal breast cell there is about 20 thousand on a breast cancer cell that is HER2 positive there can be 2 million. So when these receptors pick up the signal (from our bodies somehow) to grow....well you get the picture the cancer goes crazy and makes for a very aggressive cancer (think rabbit ears vs HDTV). So here is a break down of the tests:
IHC-staining-these receptors pump out a certain protein so to test they stain the cancer for this protein and "look" and "score" what they see. If there is a normal amount of protein, negative, tons of protein positive but if you fall in the middle like I did, well they are not sure.
FISH-this test looks internally at the cell and counts how many HER2 gene pairs there are. Too many and it's positive, not too many and it's negative and that is what I've been told. Twice that it is negative. Oh wait make that three times now.
HERmark-the test Dr. Barth is running (at least I'm pretty sure he didn't say the name but, he explained it and I'm 99% sure this is it) this test actually counts the number of the receptors on the cell surface and determines if Herceptin (correct spelling this time) is going to help or not. How? herceptin works by binding to these receptors and telling antibodies in your body to come and kill kill kill. But if there is not a lot of receptors on the cell surface then the herceptin would not do any good. So this test not only tells if you are positive or not but if you are going to benefit from taking herceptin. AND of course there are side effects from herceptin including an increase chance of heart problems so do not take unless you really need to.
OK at least I feel that I have a better understanding of what is going on.
So here is a better explanation. HER2 is a gene that is found in all breast cells in a pair. These genes put out receptors on the surface of the cell that take in information that tell it to do things like grow. In a breast cancer cell that is considered to be HER2 positive there a more than a pair of these genes and they put up a ton of receptors. On a normal breast cell there is about 20 thousand on a breast cancer cell that is HER2 positive there can be 2 million. So when these receptors pick up the signal (from our bodies somehow) to grow....well you get the picture the cancer goes crazy and makes for a very aggressive cancer (think rabbit ears vs HDTV). So here is a break down of the tests:
IHC-staining-these receptors pump out a certain protein so to test they stain the cancer for this protein and "look" and "score" what they see. If there is a normal amount of protein, negative, tons of protein positive but if you fall in the middle like I did, well they are not sure.
FISH-this test looks internally at the cell and counts how many HER2 gene pairs there are. Too many and it's positive, not too many and it's negative and that is what I've been told. Twice that it is negative. Oh wait make that three times now.
HERmark-the test Dr. Barth is running (at least I'm pretty sure he didn't say the name but, he explained it and I'm 99% sure this is it) this test actually counts the number of the receptors on the cell surface and determines if Herceptin (correct spelling this time) is going to help or not. How? herceptin works by binding to these receptors and telling antibodies in your body to come and kill kill kill. But if there is not a lot of receptors on the cell surface then the herceptin would not do any good. So this test not only tells if you are positive or not but if you are going to benefit from taking herceptin. AND of course there are side effects from herceptin including an increase chance of heart problems so do not take unless you really need to.
OK at least I feel that I have a better understanding of what is going on.
No More Chemo but new bullet to dodge
I'm done with chemo. Chemo kills fast growing cells and since my cancer wasn't growing anymore the chemo did all it could do which was a lot. We did get a good response from the chemo.
Now the new bullet. Seems never ending really but here it is and I'll do my best to explain this. We are back to the HER2neu. For review that is a type of breast cancer. For explanation think of cancer as an mm candy think of HER2neu as a peanut mm candy. Chemo kills the chocolate but leaves behind the peanut which can grow into cancer again. Not but a few years ago there was no way to treat HER2neu but now they have a drug. Its a protein so we are not talking about chemo. It coats the peanut and it dies because it can't get anything it needs to survive. I know I have been told I'm negative for HER2neu but its been a boarder line negative and here's why. When they test for HER2neu the first test they run is a stain test. Cheap and easy. Stain the tissue which turns the proteins a color and see what you get. What I got was that they couldn't tell for sure if it was negative but not enough to be certain it was positive. So the tissue goes off to have the FISH test. That tests stuff more internally in the cancer cells. That came back negative but the oncotype dx tested for HER2neu and it wasn't just negative or positive but they put a score on it. It came back negative but closer to the positive side. This has bothered me. Dr. Barth has sent it for a 3rd type of test that is conclusive. He will have the results back in about another week. The good the bad and the ugly....at least they can treat it with hercipin (good). But, it's administered every three weeks by IV (bad) and I'll have it for a year! (the ugly).
Crap.
Hoping to dodge this bullet.
In the meantime I will be starting radiation. It will be done at Hoag. Dr. Barth wants me to use one of two doctors and I'll be calling tomorrow to set up a consultation appointment.
Off to read more about radiation and hercipin.
Now the new bullet. Seems never ending really but here it is and I'll do my best to explain this. We are back to the HER2neu. For review that is a type of breast cancer. For explanation think of cancer as an mm candy think of HER2neu as a peanut mm candy. Chemo kills the chocolate but leaves behind the peanut which can grow into cancer again. Not but a few years ago there was no way to treat HER2neu but now they have a drug. Its a protein so we are not talking about chemo. It coats the peanut and it dies because it can't get anything it needs to survive. I know I have been told I'm negative for HER2neu but its been a boarder line negative and here's why. When they test for HER2neu the first test they run is a stain test. Cheap and easy. Stain the tissue which turns the proteins a color and see what you get. What I got was that they couldn't tell for sure if it was negative but not enough to be certain it was positive. So the tissue goes off to have the FISH test. That tests stuff more internally in the cancer cells. That came back negative but the oncotype dx tested for HER2neu and it wasn't just negative or positive but they put a score on it. It came back negative but closer to the positive side. This has bothered me. Dr. Barth has sent it for a 3rd type of test that is conclusive. He will have the results back in about another week. The good the bad and the ugly....at least they can treat it with hercipin (good). But, it's administered every three weeks by IV (bad) and I'll have it for a year! (the ugly).
Crap.
Hoping to dodge this bullet.
In the meantime I will be starting radiation. It will be done at Hoag. Dr. Barth wants me to use one of two doctors and I'll be calling tomorrow to set up a consultation appointment.
Off to read more about radiation and hercipin.
Wednesday, August 11, 2010
Elephant in the room
OK I'm going to address the elephant in the room. What does it look like now after surgery? I know you just can't help but wonder and it seems like a trivial thing with such a serious disease but, here's what i got.
The right girl had the cancer and it has always been smaller than the left girl. My surgeon was concerned about this and said it would be even smaller but, I'm already use to it being smaller. So its smaller. If I look at myself straight on in the mirror its obvious that it is smaller but still shaped the same as it was before. My surgeon did some really magical things that I'm still trying to figure out how she did like the girls hang at the same level. Dang I don't think they were that level before surgery. How did she do that?
Also I have discovered something that I never realized before. I see myself naked the majority of the time by looking down. I'm in the shower and I look down, bath tub look down, etc. Its a different perspective than looking straight on and some how my surgeon made them look the same from that perspective. Its the craziest thing but when I look down, I can't tell anything was done. How did she do that?
Also she tucked the incision in on the side and a bit underneath the girl so I can't see it from looking straight on in the mirror and I can't see it when I look down I have to turn sideways and lift my arm and peek at it from an angle in order to see it. Its not easy for me to see.
How did she do that?
She really did take in my perspective on things when she did the surgery. She knew what view I was going to have and she made it a nice view.
The true test of a surgeon for me is how you heal. So far so good. But still healing so final verdict is still out.
Overall I feel very fortunate.
The right girl had the cancer and it has always been smaller than the left girl. My surgeon was concerned about this and said it would be even smaller but, I'm already use to it being smaller. So its smaller. If I look at myself straight on in the mirror its obvious that it is smaller but still shaped the same as it was before. My surgeon did some really magical things that I'm still trying to figure out how she did like the girls hang at the same level. Dang I don't think they were that level before surgery. How did she do that?
Also I have discovered something that I never realized before. I see myself naked the majority of the time by looking down. I'm in the shower and I look down, bath tub look down, etc. Its a different perspective than looking straight on and some how my surgeon made them look the same from that perspective. Its the craziest thing but when I look down, I can't tell anything was done. How did she do that?
Also she tucked the incision in on the side and a bit underneath the girl so I can't see it from looking straight on in the mirror and I can't see it when I look down I have to turn sideways and lift my arm and peek at it from an angle in order to see it. Its not easy for me to see.
How did she do that?
She really did take in my perspective on things when she did the surgery. She knew what view I was going to have and she made it a nice view.
The true test of a surgeon for me is how you heal. So far so good. But still healing so final verdict is still out.
Overall I feel very fortunate.
Tuesday, August 10, 2010
No stitches but.....
still itches. I have no stitches in my incisions. There are probably stitches internally but external its just a strip of crazy glue about an half an inch wide along the entire incision. I'm sure its not exactly crazy glue but, maybe it is. Feels the same. But, its itching! And sore but healing.
Just waiting to see my oncologist on Monday. Did call yesterday and he just got the pathology. Nurse said he hadn't had a chance to look at it yet. I told her I just wanted to make sure he had it and to let me know if I need to sign a release for him if he wants to do additional testing on the tissue they removed during surgery. She was very nice and said she would call me back if they needed that.
So just in a holding pattern for now but mentally gearing up for more chemo.
Just waiting to see my oncologist on Monday. Did call yesterday and he just got the pathology. Nurse said he hadn't had a chance to look at it yet. I told her I just wanted to make sure he had it and to let me know if I need to sign a release for him if he wants to do additional testing on the tissue they removed during surgery. She was very nice and said she would call me back if they needed that.
So just in a holding pattern for now but mentally gearing up for more chemo.
Saturday, August 7, 2010
Uneducated Guess
So when I said to my surgeon how can something 1.6cm go undetected on a scan she said well when something has changed this much it can hide. That really didn't compute or make any sense at all at the time but a light bulb came on. I'm guessing here and will confirm when I see my oncologist but I'm thinking if the cancer looks more like normal tissue than cancer then its going to be hard to see on a scan. And I think that's what happened here. The pathologist compared the tumor tissue after chemo to the tissue they had before chemo and one statement said it had markeable changes. The cancer cells were no longer dividing and the nuclei were small and uniform where before it was dividing and the cells weren't uniform.
Well that's my uneducated guess and I'll be getting it confirmed with my oncologist.
Well that's my uneducated guess and I'll be getting it confirmed with my oncologist.
Friday, August 6, 2010
Perspective......
The following is brought to us by Jimmy H. who left this as a comment on my last entry but, I felt was important to make sure all read this. This explains the whole reason why your chances of recurrence is higher during the first five years and diminishes as the years go on. Thank you for the perspective!
I swear there is an 8% chance every day that I will have a cheese burger for lunch when I leave the house. For the rest of my life that is going to be huge amount of cheese burgers.
But your 8% is total for your life, which we will call PLE (which is what about 102 and surly (maybe its a fun surly)).
PLE (Pam's Life Expectancy) - PRA (Pam's Real Age) = PTTL (Pam's TTL) (Total Time to Live, a networking term, its funny!)
So the chance of a recurrence in any one years is:
PTTL = 8 years 1%
PTTL = 16 years .5%
PTTL = 24 years .33%
PTTL = 57 years 0.1403509%
I will eat about 29.2 Cheese Burgers this year. (This will cause me to run 93.44 miles to offset the calorie input of the burgers.)
The prognosis is pretty damn good!
I swear there is an 8% chance every day that I will have a cheese burger for lunch when I leave the house. For the rest of my life that is going to be huge amount of cheese burgers.
But your 8% is total for your life, which we will call PLE (which is what about 102 and surly (maybe its a fun surly)).
PLE (Pam's Life Expectancy) - PRA (Pam's Real Age) = PTTL (Pam's TTL) (Total Time to Live, a networking term, its funny!)
So the chance of a recurrence in any one years is:
PTTL = 8 years 1%
PTTL = 16 years .5%
PTTL = 24 years .33%
PTTL = 57 years 0.1403509%
I will eat about 29.2 Cheese Burgers this year. (This will cause me to run 93.44 miles to offset the calorie input of the burgers.)
The prognosis is pretty damn good!
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