Tuesday, February 22, 2011

Side effects and choices


I don't have "too many" options. I am lucky enough to have choices.
I am very aware and very thankful of that.

But, alas, it is not easy.

It all comes down to the nitty gritty numbers and statistics. It comes down to percentages and averages and trying to decide between quality of life versus quantity of life in some cases. It comes down to that old saying "Do you feel lucky?"

Today we went to the cancer center.

We spent about 3 hours there including my blood work.
(As a side note, I have a feeling that 'blood work' will soon become secondary to me.
2011 was supposed to be the year of the rabbit. I think they messed that one up. Methinks it's the year of needles.)

It is a new centre and really beautiful. Inside looked like an airport lounge. With knitting needles. Every table had a little basket on it, and inside were knitting needles and half started projects. From what I gather, the crowd in this place is somewhat older than me. I felt like the curious toddler in a room full of adults.

I met my man nurse and he took my vitals.
I have pretty boring vitals, my blood pressure is always 90 over 60. My weight is always 120 lbs. I am always 5'3" and a quarter. (And yes, any shortie will tell you that it is always important to put that quarter in there.) As long as I can remember these have been my vitals. So, smugly I handed in my sheet with these numbers already scribbled in. My man nurse chuckled when he read it. He starts with the blood pressure. Ding Ding! We have a winner. Then I get on the scale. To my delight I was even lighter than I predicted. That's right - who's chuckling now?
Next comes my height. He measures me with his super duper electronic measure stick.
It beeps and makes sounds.
Then it flashes the number: 5'2" - whaaat? That can't be.

I was 5'3" and a quarter just yesterday.

Man nurse leaves the room and as the door closes, I swear I hear him chuckle.

~~~~~

In comes doctor.

Nice man, somewhat of a sense of humor, very detailed and thorough in explanations. Just what I look for in an oncologist. I still can't get over the fact that I am using the word oncologist in a sentence - and it has 'my' in front of it. But I digress. He's a nice man.

We discuss the pathology report. He tells me what I already know. I pull out my questions and he tells me they are good ones. (thank you Dana!) He starts to read me like a book, and tells me 'my type' of patient usually likes to know the statistics on my stage of cancer. That means basically how many people live and die, who have the same cancer, same grade, same stage, same age as me.
It's a morbid idea, but it's better to know I figure.

Next he pulls out sheets of stats that he printed out with scenarios. I realize then and there that he is a man after my own heart. I print scenarios too. (Except mine have to do with kids talking back to me and what time out punishment they will receive.) But still, they are scenarios. I like to look at them.

Here is scenario number one:

I do nothing more than what I already have done:

According to the medical treatment calculator I have a 12.6% expected cancer death rate in the next 15 years if I do nothing else.
That means I have a 87.4% survival without further treatment. Not too shabby.

Scenario number two:

I skip chemotherapy through I.V. and go directly on Tamoxifen.
(Still chemo therapy and I will have to be on it for 5 years (!!) but in pill form not intravenous)

Much milder.

According to the medical treatment calculator I have a 8.6% expected cancer death rate in the next 15 years. That means a 91.4% survival - already so much better.

Scenario number three:

I choose to do traditional chemotherapy for 4 cycles AND go on Tamoxifen chemo for 5 years.

According to the medical treatment calculator I have a 4.8% expected cancer death rate in the next 15 years. That means a 95.2% survival - getting better by the minute, isn't it?

This was supposed to be all the choices. To me it seems obvious that I will do the traditional mainstream chemo PLUS the 5 year Tamoxifen chemo (pill form). But then I wonder if I could push further. I ask if there is anything else that could get my percentages of survival even higher. I know I know, I should be grateful for all I was shown already. I am. I just wonder.

After ummm-ing and errrr-ing he tells me he will be right back. He's going to check his handy dandy treatment calculator for one more thing. He is unsure if my medical will cover this suggestion, because traditionally is considered 'too aggressive' for my stage of cancer. But he said, if I want to, we can try calling them - the powers that be.

He comes back with my fourth and final scenario:

I choose a more aggressive traditional chemo than the original one suggested, for 6 cycles instead of 4 PLUS Tamoxifen for 5 years.

According to the medical treatment calculator I have a 3.9% expected cancer death rate in the next 15 years. That means a 96.1% survival. This is as good as it gets.

It may seem simple but it's not. This last choice has me agonizing over a 0.9% survival difference. It would be a much much harsher chemotherapy and the side effects would be much more substantial INCLUDING heart muscle damage.

The other chemo did not have that side effect (plenty of others though)

I am willing to bet a lot of people would roll their eyes at 0.9% survival rate. But this is MY survival rate so I won't. I know it's only a small difference. Not even 1 percent. What are the odds? But you know what the odds were of a woman my age with my history to have my type of breast cancer? 0.03% - talk about small percentages.

All of a sudden 0.9% is not that trivial.

I will think of it some more over the next few days - even though I think I have an idea of what I probably will choose. I have to weigh all the benefits and all the risks and decide what is worth more to me. Feel free (in fact, I would love to hear it) to weigh in with your comments. Give me your thoughts and ideas. Bouncing ideas back and forth not only helps me compartmentalize the situation but also is a good way to be made aware of things I may not have thought of.

Otherwise I'll be forced to go back on Friday and bring a coin.

Oh and as we were exiting the cancer centre a very nice, very friendly, very old lady volunteer asked if we would like to see their free wigs and hats that were available to me. We followed her and found a room full of about 20 wigs (all grey by the way except for one that was salt and pepper) and a bunch of knitted hats. The friendly lady talked about how easy it was to knit and crochet these beautiful hats and scarves and I told her how uninterested in knitting I was.

"The youth these days" - her eyes seemed to say.

At the end of it all she asked which wig I wanted.
I was extra polite when I told her that none spoke to me.

Instead I chose two knitted hats.

She gave me a bunch of literature to take home and as I walked out of the centre I realized she snuck in a 'how to knit a hat' brochure in with the papers.

I guess she was sneakier than I thought.

15 comments:

Sayre said...

It's kind of like making sure you get your extra quarter-inch noted, these better fragments of a percentage. Were I in your shoes, I think I would opt for the 4 cycles and 5 years. Chemo is rough and takes a toll. Those extra two cycles might damage your heart - another thing that could ultimately shorten your life. I don't think I would want to take that chance. The .09% could be negated with that particular side effect.

That's what I would do if I were 35 and had two young children and a fiance I needed to spend more time with. Were it me choosing for myself at 49, married already for 16 years and with a 12 year old, I might opt for the pill-only approach. I love my husband and son, but my main concern is getting my boy to adulthood. Anything after that is gravy as far as I'm concerned - and I want to be as in his life as possible during that time. But that's me. And we are not the same people.

Question.... did they also do the hysterectomy? If not, is there a chance that the hormones could reignite this cancer? Would any of those treatment options take care of that as well? Just wondering...

Vancouver Voyeur said...

Tell me more about the possible heart muscle damage associated with that last option. What kind of damage are we talking about? Is that the only additional side effect? What are the chances you'll get that damage? How bad would it be? How strong is your heart now? Can they monitor your heart for damage, and then change course if it looks like it's too much for your heart to take? What kind of monitoring will you receive after the chemo to make sure the cancer never recurs?

Sayre said...

Oh, and the free hats? Explains all the bowls of yarn and knitting needles!!! They make the patients knit! Actually, a pretty good idea if you have people who are talented at that kind of thing. I am not. It makes absolutely no sense to me.

I think I'd have picked a white/grey wig. Just for kicks.

Beth L. Gainer said...

Excellent posting. I remember talking over the odds of survival with various treatments with my oncologist. (And yes, it seemed strange to say "my oncologist" at the beginning. Now it's normal, whatever normal is supposed to look like.

Anyway, it's really up to you on what treatment option you will choose. I remember making such decisions. Not easy because the truth is, we all want a guarantee that we will live. And the truth is, that there are no guarantees...one could get hit by a bus tomorrow.

What really resonated with me was your comments about being one of the youngest patients. That was my experience, too. I somehow felt depressed every time I was at radiation waiting in the room with retirees.

It sucks to have cancer young, but then again, it plain sucks to have cancer at any age.

embracingtherain said...

Michelle,

I just wanted to stop by to thank you for your blog. I stumbled across it this weekend through Kathy's post on Crossing Over as I was searching and reading ALI blogs. I found a lump in my left breast last week at the age of 27 and your blog has been so helpful to me as I've been going through the process of getting it checked out. So, thank you from the bottom of my heart.

As a fellow shortie (5'1 and 3/4) I agree that the quarter inch is most definitely very important. I am sure you will figure out the right treatment option for you. If I were you, I would want to know the answers to Vancouver Voyeur's questions before I decided between options 3 and 4.

You are in my thoughts and prayers,

Michelle

Mandi - Darn Good Lemonade said...

Choices! I think you need to decide really what is best for you. Emotionally, physically, financially etc. You can always decide to add or take away those two treatments anytime during your chemo process I assume? Why not roll with it? Get through those first 4 and decide if you want to kick cancer's ass harder tack on the next 2 (plus you can check your heart health at that time), or you can decide you have had enough and .9% isn't worth it at that juncture.

I think you totally missed a photo op with a gray wig. ;)

Knock knock - it's cancer! said...

Sayre - good point. I guess it's the old 'quality' vs. 'quantity' debate isn't it? I am doing lots of research and feeling better and better about my choice.

VV - There is little I know. They don't know how many heart muscles would be damaged, just that they will. They would do a heart test before and after completion and they would be able to tell me what got damaged then. It's troubling to think about it though.

Sayre - I may pick up a grey wig on friday, just for kicks - Lol.

Beth - The knitting needles gave it away. I honestly felt like I was at grandma's house.

Embracing - I know exactly how scared you must feel right now, I commented on your blog regarding that. Feel free to email me if you need to.

Mandi - Unfortunately the 6 cycles uses completely different drugs than the 4 cycles one.. so I couldn't switch mid stream. And yes, I totally agree, missed photo oportunity. :) LOL

Kathy said...

Michelle - I always finsihing reading your posts and the first word that comes to my head is wow. Wow because that is so much to digest and wow because I am so impressed with you. We are kindred spirits because I am all about questions, stats, sceanarios, etc. When I was pregnant with Molly the docotors and nurses would tease me when I came to my appointments with (no joke) a large binder that included all of my research, notes from previous appointments, color coded charts, etc. I always felt like the more information I had the more in control I was (even if that wasn't necessary always true).

I also appreciate what you said about getting use to blood work. The phlabotomist (sp?) at my OB's office and I like to joke about how 8 years ago when I first met him to get my first routine blood draw for my pregnancy with Sean that I cried. By the time I was well into our first cycle of IVF 4 years ago I would show up for bloodwork and we would try to figure out which arm was lessed bruised from last time and that would be the one we would use that time. Not mention all the shots I was giving myself and/or Bob was giving me. So yes, I imagine you will get as use to that as anyone can.

As for what "I would do" or recommend. I echo those who want to know more about the heart damage, as I do think that is a significant factor. I also tototally get you thinking that 0.9% is relevant. Both our interstitial ectopic pregnancy and Molly's heart problems carried a less than 1% chance and we had both happen to us. So I for one know that those stats happen to real people and sometimes more than once. On the flipside we were also told we had 1 - 2 % chance of conceiving again on our own and that was BEFORE we had Abby (on our own). Go figure...

Now for the most important question, that you neglected to comment on: WHAT DID HE THINK ABOUT YOUR SWEATSHIRT?!

Lastly, I have always wanted to learn to knit, because my paternal grandma did and intend to learn someday. But I appreciate it not being your thing.

Well, thank you for the update, though we haven't known each other long, I do feel like we are kindred spirits (did you ever watch Anne of Green Gables when you were a kid?) and find myself thinking about you here and there and wondering how you are doing. I am glad that you are hanging in there as you discern your options.

Take care,
Kathy

Knock knock - it's cancer! said...

Kathy - yes, I do feel like we are kindred spirits as well. But no, I have never watched Anne of Green Gables when I was a kid... I lived in Romania til I was 14 years old with no TV and no electricity ... hahah, don't you feel bad now? LOL

I did not wear my hoodie at the doctors. I chickened out... didn't know what type of doctor he'd be and if he'd find it offensive or not. I did however wear a breast cancer shirt that said "I fight like a girl" :)

pinkunderbelly said...

My two cents' worth is 4 cycles and 5 yrs of Tamoxifen. The extra percentage you would gain with the more aggressive chemo is cancelled out, IMHO, by the risks: heart damage and other side effects. Tamoxifen is easy to tolerate, and taking a pill every morning is a small price to pay for insurance vs recurrence without the damaging side effects of IV chemo. The worst thing about the Tamoxifen for me has been the hot flashes, but my dr prescribed Effexor 75 mg and the hot flashes are practically gone. I know it's a really hard decision, but I know you will make the right choice for you, and your blogging community will support you.

tweetey30 said...

Well I am not sure which one I would choose if I were you. But I am glad he went above and beyond to see if there was anything else for you..

I dont know how to knit but i do crochet and its relaxing to be honest with you. Well anyway i need to go find some food. Besides reading this and helping children with home work I havent been able to eat yet.. I have been up for an hour so far and havent eaten anything..

Kathy said...

OMG! Yes, now I feel bad... Seriously?! No TV and no electricity?! I am surpised you don't already know how to knit with all that free time you must have had! ;) Another of my favorite childhood movies was a "made for TV movie" about the life of Nadia (the gold medel/perfect 10 scoring gymnast from Romania, though I am sure I don't need to tell you about her). Well, maybe someday you can watch Anne of Green Gables, though I am not sure if it would be as enjoyable for the first time as an adult. But I guess you would just have a different perspective.

You chickening out?! Hard for me to imagine... But I totally understand! :) I am glad to hear that you still wore a bad ass shirt, as I am all about wearing things to doctors appointments that bring good vibes! I always wore special things (pieces of jewelry and such) when we would go for the fetal echocardiograms and other importants apppointments during our pregnancy with Molly.

Good luck tomorrow! Sending lots of positive thoughts, good vibes and healing prayers your way! Looking forward to hearing how it goes.

Your kindred spirit,
Kathy :)

Anonymous said...

you know that you're lighter now because you lost your "girls"... I don't see how that would cause you to shrink though... :-)
You already know in your heart which course of treatment to take. trust that voice and go with the flow...
keep the faith warrier girl!
hugs
Wendy

Laura said...

MIchelle- Your writing and superwoman attitude is inspiring. Thank you for sharing your journey, it's so...cathartic, no? I used to bristle at the well meaning little old ladies always plopping knit hats on my bald head and suggesting I try knitting too. Really? My hands shake like a mad woman and I have no platelets...sounds like a capitol idea..:)

When I was given treatment choices regarding what kind of chemotherapy I was going to have before my bone marrow transplant. They said a "lower dose" (HA!) would do the trick to kill all of my cancer and marrow but also said that because of my young age of 25, I was an ideal candidate for a transplant with full blast chemo. The decision was agonizing and like you, the difference in outcome between the two was nearly the same. I felt the same way you did, asking about the more aggressive treatment, "balls to the wall" is what I said to my onc...

Whatever you chose, know that that is the right choice, because you had the power to do it and you clearly have a wonderful support system. If I may share one bit of advice about chemo- there, as you have learned, SO MANY types, doses and combinations. When you're talkin' higher doses, there are many more long term side effects that are...sucky. I went with the slightly reduced intensity plan and am still getting my ass kicked six months later.

You are on hell of a warrior, girl.
Much love,
Laura

p.s. I got all of my wigs here: www.voguewigs.com from a seller called Forever Young. They ROCK, super rock star:) Hope that helps.

worms in children said...

I learned a lot from the article and this information may come in handy to me in the future. Thanks