I think I'm so smart, but it turns out my two intensive weeks at Google U haven't made me a doctor. Lots of test results to report, but uncertain about what it all means. For a girl like me, who loves to have everything crystal clear, this is frustrating.
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."
Dear Carolyn...this is from Larry first:
ReplyDeleteDear one,
Thanks for your latest blog. I know all too well the shock of hearing any doctor mention death with a diagnosis since I've heard it a number of times in relationship to my asthma. I also felt it when I read the d word in the side effects of two of the drugs I take every day. I feel for you so much. There is nothing quite this verbal earth quake. And the numbers game about percentages and chances of this and that is also so challenging to master. Since you are so into humor I will share this analogy with you - "one minute does not seem to be important, but it becomes very important depending on which side of the bathroom door you find yourself!" I also share your frustration about not being able to know or understand everything about your condition. I actually surrendered investigating mine although Sue thinks that since we have spent so much time in doctor's offices and she has read everything on the walls that she is Dr. Doro. It's funny that she has gained so much analytical perspective that several times in a complicated diagnosis point that one of my doctors will turn to Sue and say "what do you think?" Pretty soon she will have her own practice. I'm not anywhere as good at the analysis as my doctor's are so I had to come to grips with while I want to be an educated patient I will never be a doctor and that was hard since I had been misdiagnosed by a doctor for two years! And its even harder for you with that incredible investigative reporter smart mind of yours that can master things like the foreclosure crisis in ways that elude bankers and financial experts and make my head spin. Inquiring minds want to know is both a good thing and a curse. I think balancing the need for information with having time to live life is a huge challenge since conditions like ours can become a life's work of investigation and totally consume a person. I have to tell you that your sense of humor is an inspiration for me and something I would like to have more of about my condition. I have it about other things but when it comes to my asthma I can't do it very well. Thanks to your example and role modeling I'm working on it. So I may go into a stand up comedy act for my next pulmonologist appointment i.e. a guy with asthma walks into a bar etc. or a rabbi, priest and imam with asthma are on a life boat etc. Thanks for the inspiration. I feel so much like a fellow traveler in your journey. Know that Sue and I are by your side at all times. We love you so much. And Mark too. Thinking of you always.
love
Larry
Now this is from me with love:
Promises (From Sue)
Such a childlike word
Negated by a doctor
“No more promises”
Promise
The word we heard from girl friends
When we linked pinkie fingers
Or criss-crossed our third grade chests
With eight year old right hands
Promise to always be your friend
Promise to meet you at the big rock on 28th Street
Right on the corner
Really
Truly
If anything happens and we can’t find each other
We’ll meet there…Promise
My grade school and beyond
Best friend Mary Ellen
And I made that promise to each other in 1945
And I want you to know
We still talk about it
We still mean it
Through divorce
Kid problems
Health issues
Family deaths
Distance and age
Two 73 year olds
Milwaukee Wisconsin
To Oakland California
Still live up to our promises
Still talk on the phone at least once a week
Still listen to each other’s good and bad news
Commiserate
Support
Give advice
And make each other laugh
I say to you my dear and wonderful friend … Carolyn
I promise to be there for you
Like the big rock on the corner of 28th Street
Milwaukee Wisconsin
Through bad news and good
To help you smile when smiling is hard to do
To help you with people who promise
And those who can’t
And know this:
These are promises easy to keep
Because you and I
We are true
Pinkie finger cross your heart
Friends