Thank you everyone. I do feel better having switched, I feel like this oncologist #2 is more on the same page as me. I also liked (as did my family and some of you commented on it as well) that he didn't hum and haw when I asked him what he'd recommend to his daughter. So, I chose the same regime. And the leukemia 1% side effect, I looked through my old papers in my other chemo treatments, it was there all along, apparently ANY chemo has the risk of that, so not just 'the red devil' ... this is the one that has the heart problems sometimes too, but in 1% as well, and there are pills I can take for it if it happens... and still live with it. All in all, I'm happy with my decision. The new drug makes me a bit more tired, and makes my pee red, which was entertaining for a while, but now I'm just waiting for the bonepain to kick in... I had my shot yesterday at 1:30pm, so that means around 9 pm tonight, I'll be back on the floor moaning in pain :( ... What a weird countdown to have, lol. Thanks y'all for the good thoughts, catch you in a few days :)
Remember a while ago when I had to make up my mind about what chemo regime to go on, and I had all sorts of statistics handed to me?
Well, I switched oncologists this week, and now everything is starting from scratch. My first oncologist and I just didn't mesh. He'd answer most questions with 'whatever you want to do' instead of guiding me to what the norm in his field was. He almost discouraged me from doing chemo, saying studies show that it may not be needed, and then said 'but if you want to do it, that's fine' and when I asked him about the different chemo's, his standard answer was 'six of one and half a dozen of the other' - which is beyond frustrating, and not having been born here or grown up here, I hadn't heard that expression, I didn't even know what it meant. Anyway, long story short, we were not a good fit so I had to look elsewhere.
After all, I have a hoodie that says 'my oncologist can beat up your oncologist' and I would like to wear it sometime... It's been collecting dust, since my oncolgist was a bit of a pansie.
So, I found a second oncologist and I met with him this week. I honestly thought I was just gonna have a chat with him. I didn't for a moment think that I would end up switching to him right away, if at all, and certainly didn't think that I'd change my entire chemo regime after talking to him. I went alone, expecting a regular meet and greet, and about 1 hour later I found myself really wishing Brad had come with me. Or anyone for that matter, someone who could help me make sense of it all.
Let's start at the beginning. I am not going to explain everything again, since I've done so in older posts, but my pathology report states that I have 2 positive sentinel lymphnodes for micrometastes in them under .2mm in size. And the armpit lymphnodes that they took out, all 8 were benign, meaning non cancerous. Fantastic news right?
My first oncologist said that put me right in the node negative status, meaning the cancer hadn't spread to my lymphnodes, which is why he said chemo was elective, and the chemo he had put me on originally was only 4 cycles. Not exactly aggressive, but to him it seemed enough since he considered me low risk. I was never fully comfortable with this regime, I told him that several times, but again, he and I didn't see eye to eye... and that wasn't only because he never ever made eye contact with me either. We just were on totally different pages.
The new oncologist looked at my pathology report and said 'well, if I were to see you before you had seen anyone else, based on your report I would call you node positive' - WHAT? Node positive? But I thought my lymph nodes weren't affected in my armpit? "True" he said, "but your sentinel nodes were, and even though it's only a micrometastes that measure less than .02 mm it's still cancer cells in the sentinel nodes. That, in my opinion still counts as the cancer spreading, or at least trying to spread." That man has some logic to him. It DOES make sense what he is saying.
5 years ago, we didn't have access to the sentinel lymph node biopsies, therefor we'd never have found these micro cancer cells there. We would have been under the assumption that I was node negative, based only on the armpit nodes... But now that we have this option, the oncologists are split down the middle, some oncologists think that this type of result makes me node positive, some think it makes me node negative. Depends on the oncologist.
That is hard for me to hear, because it puts me in no man land, neither here or there. I would rather err on the side of caution though so I tend to agree with oncologist number two that I should be treated as a node positive patient. Which makes chemo not only recommended and necessary, but we need to extend it 2 more cycles, which now brings me to 6 cycles in total.
Bummer.
Oh, and then we tackled those statistics again. He told me the numbers that I was shown are grossly wrong. (I had 12% of re-occurrence change if I didn't do chemo, and 4.8% re-occurrence if I did do chemo) He said the statistics are based on an 'average' breast patient. Which means that the average age is over 60. This second oncologist said that since I am so much younger than that, being 35 my chances of re-occurrence are much higher. In fact, way higher, like 40% chance of re-occurrence if I don't do any chemo. With chemo it goes down to something like 20%... so not exactly the 4.8% that I originally was told. THEN if I go to the 6 cycles, adding the very medication I didn't want to add (THE RED DEVIL - for those of you who are familiar with breast cancer chemo drugs) it will give me an additional 3%-5% more chance of survival, bringing the risk of re-occurrence to somewhere around 15%-17% when I'm all said and done.
Sigh.
So, I had about half an hour to make up my mind, since my chemo #2 was scheduled for the very next day, and IF I wanted to switch everything, I would have to act fast. We'd have to do bloodwork, call the other centre and switch everything over and then find a spot at the new centre to fit me in at last minute notice.
Which we did. I made the decision after I asked the doctor what he would do if it was his daughter, and he replied 'no question, the 6 cycles'.
So, I am now doing 6 cycles, I am getting the 'red devil' which I tried so hard to avoid because of the possible heart damage (1% - 2% of patients get weakened heart muscles) and the risk of leukemia (less than 1% get a chemo induced leukemia that is not treatable and can show up about 7-8 years after treatment) ... so after weighing the pros and cons, I've decided to go ahead and do it anyway for the 3% - 5% increase in survival that it can give me.
I am mentally drained.
Today was the second chemo round, and it was all new again, since we added the new drug. It was pretty uneventful, which was good, no allergic reactions, and now I'm just waiting what the new drug's side effects will bring. I am told it will increase nausea, fatigue and my pee will be red.
Kinda funny about the pee thing, but we'll see about the other things.
That's why I've been quiet here, I'm hoping I made the right decision. I think I did. I feel better about this chemo therapy than the previous one, and I feel like I'm doing everything I can to beat this thing.
I am also adding the hysterectomy with ovaries removal and the 5 year oral chemotherapy to it since I need to block all hormones forever.
If this isn't sufficient, then I give up.
*throwing hands up in the air*
But, for now, I will go get my oncologist hoodie out and wear it with pride.
