Thursday, October 23, 2008

My options.


UPDATE: I took this video as we got off the elevator. Doesn't do the place justice though.

Today I met with my new surgeon and radiation oncologist. I'm still struggling with the fact that I have to go see an oncologist. I really loathe that. Man my shoulders are tense. Ok, I need to regroup. Let's get on with this.

The surgeon appointment went well, I liked him very much- he got my jokes, and almost took me up on my challenge to draw a circle on the Etch-A-Sketch Gray brought to stay occupied.

We discussed the surgery day, now one week away. I'm pretty fine with that whole thing. After he left, the nurse stayed behind so we could talk about him. I like her so much, Chris. We laughed, we talked a little, she said she was going to come see me the morning of my surgery and really, she's got no reason to do that. She's going to come just to see me. That made me feel really cared for and it helps a lot.

Then I went downstairs to the radiation area. Downstairs doesn't do it justice. I descended. Down. And down some more. I passed Dante having a cappucino. Really though it was two levels below ground into the lair. It's blue down there, like the humming blue fuzz of the ground before lightning strikes. Gray and I were immediately off-put. Through the hallways which seemed more like catacombs, we came to the sign-in desk. I walked past a woman in a hospital bed who was obviously very far into her treatment. Or not. Then I stood in line behind a woman who was obviously very far into her chemo treatment, she had no hair. And I was in front of a woman complaining the "machine" was broken yesterday so she didn't have her appointment. And that it was broken this morning too. And last week.

I signed in and was chatting with Gray for a minute before we were called to the exam room- Gray was wearing purple latex gloves that we pilfered from the surgical exam. His sweaty little hands seemed very happy to Etch-A-Sketch.

The radiation oncologist came in quickly and proceeded to talk at me for an eternity. I consider myself a pretty intelligent gal, especially so when discussing all this cancer stuff- I've been reading scientific journals, I've been teaching myself, I'm pretty well-versed in the jargon. Still, I had trouble hanging on to all that he was saying, that's ok, I've got the jist and here it is.

Radiation. (Also called radiotherapy though no part of this seems like "therapy").

The hospital does a 1 week intensive course- you go in twice a day for one week for this targeted radiation. I wanted this version, I could've been ok with this version I think. But I am not offered this version, it's for people 45 and older. Why not me? No reason, I'm just outside the study parameters. The doctor was partially apologetic about it.
I asked about the 3-week course I'd read about in the New York Times. No. They're doing that in Canada, not here. It's not the standard of care that "we're" recommending for you. Why? Just because we don't do that, it's not the standard of care.
So, my only option is a 6-week course of radiation. 30 treatments of high-intensity whole-breast radiation. Not localized which I would have preferred.

What's my problem?
Here goes:

1) Radiation changes the tissue of your breast. Fancy medical talk aside, it changes it forever.
2) Radiation can cause cancer. 1 in 10,000 will develop sarcoma in a 10-20 year follow up study.
3) Radiation is a one-shot deal. If I play this card now and get breast cancer again, this course of treatment is a non-option.
4) Tissue that has been radiated is difficult to reconstruct should I ever require a mastectomy and want implants it's not easy or doable or something, I don't know. It's not the "same".
5) Lots and lots of other scary possibilities- burning of the skin, thickening of the tissue, swelling of the breast that may never go away, blah blah scary stuff.

Well then, maybe I should not have radiation!
1) I will have a slightly higher chance of getting this again
2) I will have to be very highly monitored to make sure cancer is not developing. This means:
Getting mammograms/MRIs/sonograms or whatever every 6 months
The doctor said I will have post-surgery changes in my breast that will be confusing on the diagnostics, meaning I'll continue to be a pin cushion for every shadowy image on every test.
3) I am very very young. I should be doing every single thing I can to make sure this doesn't return.

If I have surgery without radiation, I will have to live in this shadow of doubt every six months for who knows how long.

If I have surgery with radiation and some time down the line cancer returns, my immediate option will only be mastectomy in the radiated breast.

Other stuff:
-various trials suggests a small improvement in survival with the addition of radiation to lumpectomy

-In the study that followed women for an average of eight years after lumpectomy with or without radiation, 1.6 percent (14 women out of 814) died of breast cancer. But recurrence rates vary, depending on the treatment, ranging from 1 to 2 percent at 10 years after a mastectomy to 32 percent at 12 years after a lumpectomy alone.

-Gradishar and Dr. Kathy Albain of Loyola University Health System noted that the Lancet overview found a significant increase in second breast cancers, lung cancers and heart attacks in the patients who received radiation

-"In doing this study we wanted to capture outcomes among those women who opted not to undergo radiation."

In women with DCIS low- to intermediate-grade level of risk, (I have intermediate DCIS) the recurrence rates were 6.1% in the ipsilateral breast and 3.7% in the contralateral breast after 5 years, said Dr. Hughes."I think we can say that if these women would have had radiation, these rates would have been halved," she said. "Numerous clinical trials have shown that radiation decreases the risk of recurrence by about 50%."

"I think that a 6.1% recurrence rate is acceptable," Dr. Hughes said.

I can't help but wonder about the women who had recurrances. What were their life styles like? Did they have the BRCA gene? Did they smoke? Did they exercise? Did they do all the healthy things that I'm doing and will continue to do? How much of recurrance data tracks that? I can't find any.

This decision is immense. And intense. And I'm petrified. Ten times today I was sure of doing the radiation. And then I was sure of not doing it.

8 comments:

Mike said...

Hi Jenni, I'm a random cyclist that happened to trip across your blog some time ago and have been catching up with whats happening ever since. I love your entries about you, your son, your friends, cycling, jenni-hoops and yes even your struggles with your medical issues. Just wanted you to know that you are in my prayers and if it wasn't for the 1500+ miles between us I would give you a big hug before each of your appointments. If your appointments ever bring you to Houston for treatments you can have a real one for sure. Please please keep writing, you are an inspiration for all of us who don't have the time or the stimulating content for a blog. :-)
Take care, Mike
bikejournal username:
mjschlei (commuter miles)
mschlei (road miles)

Jenni said...

Hi there random cyclist Mike, I'm happy to meet you!
Thank you so much for the prayers, they mean a lot to me. And it means a lot too that you reached out now.
Big hugs are the best- maybe I'll go soul searching, hop on my bike and end up in Houston...hmmmm. Tell you what, you start riding now, I'll start riding now and we'll meet in North Carolina. Then I'd have good reason to skip surgery. (:O)

Mike said...

Sounds great! Tell that ol doctor that you have a bucket list of things to do and you haven't got time for him. ;-)
At first when you said North Carolina I thought HEY! I may be geographically challenged but NC is WAY closer to you! But then I realized you have more hills so that's fair...that's if the loop around Houston wouldn't kill me.
Do you have a long enough riding season up there? That's one good thing about TX, year around temperatures to ride in.

Jenni said...

Ah yes, the hills. I do love hills. But I'm very geographically challenged and probably thought NC was a midway point. My first call was Virginia.
We have a long riding season if you're willing to deal with the cold. It takes me a while to break through into the cold riding, but once I do, I'm good to go. Just takes about an hour and a half to get dressed- feels like it anyway.

Mike said...

Yes, a hour and a half to get dressed and then the bathroom calls...never fails.
Some people call our hills overpasses but I call them hills. I have ridden the Colorado MS150 twice so I actually do know what elevation is. It's beautiful up there and the ups just go on forever.
I'd say it gets cold here but we are talking in the 30's. However, when you combine that with our 80% humidity and it goes right to the bone. (I bet I'm not getting any sympathy though, am I?)
In your last video I heard you call your son Gray Bear. When my middle son was little we called him Bear Bear. Nickname for Barrett. Hard to call him that now since he's 18...holy #%@$...he's really 18! wow, now I feel old.
In your pics you have one or two of you and Gray, lying on the bed, head to head with the caption for one of them that says "That doesn't suck" For similar situations I used to say, "It doesn't suck to be me". Those are the best photos ever.

jord said...

gray looks so cute :)

Jenni said...

Yeah, Mike, no sympathy on ride conditions. Remind me to electronically whine over my friend Danielb's birthday ride, held on the coldest day of every year. Last year I succeeded in achieving on of my goals, to have my water freeze.
Hey if you feel like shirking all your responsibilities and taking a schlep, we're riding on Sunday. Let us teach you what hills are all about.

Mike said...

That's funny you should mention that entry. I believe that was the first blog entry of yours I read. That's brutal! If I reached down to grab a FROZEN water bottle I would have paniced. Yikes!
I'll have to send you a picture on my birthday ride. It's in January too. Sometimes we have to wear long sleeves, that right! LONG SLEEVES!...what?
I have a question, how do you keep those snow chains on those little tires? :-)
Hhmmm, shirk my duties and schlep to New Jersey...sounds like a great plan. But wouldn't the authorities charge you a roadkill fee for leaving me on the side of the road? Ha!
You're awesome!
Mike (mjschlei@yahoo.com)