Wednesday, April 6, 2011

Update: Everything got turned upside down - looong post

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.


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.


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.


Anonymous said...

Love your post! Reality - smack in the face.
While I know nothing about what you're going through, I do think (based on your words), that you are making the right decision. I like #2 as well.
Thinking of you :)

Mary xo said...

I think you made the right decision about switching oncologists. You need someone who is on top of things and can specifically tailor your treatment to your particular situation. I too am going on Tamoxifen after my treatments are complete. Are you doing any radiation? I was told I will need it even though I've had a mastectomy because of my situation. I was wondering why you are doing a hysterectomy, is this something they recommended for you? I have not had that mentioned to me at all, just wondering. Hope the Red Devil isn't too rough on you!!

Sayre said...

Wear your hoodie with pride - sounds like this oncologist is ready to kick cancer's butt! I'm sorry you didn't have this guy to start with. You might be that much ahead of the game, but at least you found each other early on. I hope this round isn't as bad, but even if it is - you will handle it with the strength and grace I know you have inside.

Laura said...

Michelle, I'm sorry to hear that your prognosis has been changed for the worse but really glad that you took charge of your own health & future by going to talk to someone else and switching doctors when you found a better fit. Nobody will be a better advocate for you than YOU. Hoping for minimal side effects through this round, you're such a strong woman! Love and hugs to you.

VV said...

You listened to that inner voice right from the beginning when you found the lump. You were aggressively proactive in attacking this thing. That voice kept niggling at you that the doctor wasn't a good fit for you and you bravely went proactive again. When you consider you're fighting for your life and your future, what would your regrets be in the end? Only that you didn't fight hard enough. So I believe you're doing the right thing. I do worry about the heart muscles and the future leukemia, but your alternative is this cancer coming back. You have to fight with every weapon at your disposal. On a lighter note, M says she's going to take me back to Vancouver for my 50th birthday (in 2 yrs), so I'm expecting a great visit with you!

AshleyHami said...

Good for your for advocating for yourself! I know it must have been hard for you to do a 180 re: treatment and a new doc - and the pressure to do so in a half an hour! Just know whatever decision you made, is always going to be the right decision for you.

I also love that your new doc gave you a straight answer to the "If I was your daughter, what would you tell her to do?" question and didn't pussyfoot around it!

Attila the Mom said...

Oh golly, hang in there, girl! I'm so glad you found another doctor who is more engaged.

Kathy said...

Wow! That's a lot to digest. I totally would have switched too and am very impressed with your new oncologist. Definitely sounds like a guy that is worthy of you wearing your sweatshirt and I am glad he answered your "what would you do if it was your daughter question." During our pregnancy with Molly it drove me crazy that more doctors would not tell us what they thought we should do. I totally "got" that in this day of malpractice many believe that they shouldn't or can't, but I still valued their opinions and wishes they would have let us known what they were "really thinking" sometimes.

I am sorry that things got turned upside down for you like this, after you had your plan and were moving forward. However, I really admire your proactiveness! I hope and pray that changing doctors and doing what seems right/makes sense to you makes a difference in your prognosis in the long run.

Hang in there. (((HUGS))) Sending lots of prayers for healing and strength your way. I wish that all it took to beat cancer was having the support of your family and friends, as if that were so you would so be kicking this breast cancer's ass!!! said...

hey there my friend. I hope you are well today. I am just getting to read this. I was too tired this morning from work to read it. I am happy to hear you found a better dr.. This one sounds more reliable and knows what hes doing compared to the other one..

You are strong you will survive this and kick its ass all the way home.. hugs my friend.

Mandi said...

I am proud of you. Way to stick up for yourself and get a second opinion! Honestly the red devil hasn't been super terrible to me, I hope he behaves the same for you.

I wasn't given any choices in my treatment beyond surgery, and honestly, I am o.k. with that. I think 'six of one and half a dozen of the other' isn't something I want to hear from a doctor when it comes to cancer. This is your life we are talking about here, it isn't like it is a cold...

Tonya Graham Jamois said...

Better safe than sorry, I'd say. Be aggressive and do it all NOW rather than having to do it all again later on. I passed on the Adriamycin. My onco said I could participate in a clinical trial going on right now to see if it makes a difference in the taxotere/cytoxan regime. I declined. After a lot of discussion, prayer and consulting with other cancer specialists, I decided to just do the TC for 6 rounds. I'm glad you like your new onco. It's important to feel like you are given the most information and guidance as possible!

Unknown said...

Michele your totally awesome real approach is so refreshing -good stuff going with your gut and changing docs -he sounds like he has positive,honest energy matching yours -take care love Leslie and Roy

Genkicat said...

Wow! I think you made a great choice, and I'm glad you found Dr. #2. Hang in there. And NO giving up. EVER!!!! :-)

Unknown said...

Hi Michelle.
Like everyone else I think you have made good decisions, right from the start. Is it the tamoxifen than causes the bone pain? Do the doctors give you anything for the pain or is that just too much medication?
You mentioned the total hyterectomy..does that wait until after your chemo cycles?
I'd sure like to be able to help out somehow..please let me know if there's anything I can do. I keep you in my prayers hon.
Sending love your way.
M's Mom. xxx

Anonymous said...

If you feel like it's a good decision, then it is. Gut instincts are usually right, as was the case with switching oncologists. So glad the new guy is a better match for you, and so proud of you for being pro-active and getting the care that's best for you.

nancyspoint said...

I'm glad you made the switch. Sometimes that's what you need to do. I was so afraid of the red devil, but also decided to go with it. Looking at all those statistics and trying to digest them all to make decisions does get a bit mind boggling doesn't it? Good luck with the new course of action. I'm taking those last steps you mentioned this week, so that I can then also throw my hands up and say, there I'm done! I'm a bit unnerved by it all right now, but...

VV said...

I wish there was something you could do to avoid the pain. *sigh* said...

hey there hugs from me and the girls.. Hope your feeling better today. or when you posted the update.. I have been around a little more lately or trying to be since I changed blogs. I wasnt into it for a while. Hope this gives us all new inspiration with something new.

Again like VV said wish there was some way to help out. again hugs and get well soon.

Anonymous said...

I am so glad you have found an oncologist worthy of your sweatshirt. I think it is really important to have a Dr. you trust, feel comfortable with, and confident in. I hope you are still really liking the new oncologist.