Friday, November 30, 2007

The Birth of Hope

OK, when you find out you have breast cancer, they put you on this fast-moving roller coaster and for most women, within two weeks of the diagnosis you've seen a surgeon, probably already gotten a sentinel node biopsy (wow but they hurt) and maybe have scheduled your surgery. Being a contrarian in SO MANY WAYS I went about things a little differently by doing my chemotherapy first (at the suggestion of my savvy surgeon) and then scheduling my surgery. Most women never see the radiation oncologist until after chemo and surgery. BY CHANCE I actually got to meet the radiation onc out here because he came to the breast cancer support group in October. He is THE radiation onc for this area. But he came here from the University of South Carolina medical research establishment and after doing some big studies. More than any other thing, cancer is a disease which is treated via a statistical world view. I knew I needed to "pick this man's brain." And today Jenn and I went and picked and questioned and questioned and questioned AND questioned!

By using some of the information he gave me a couple weeks ago, and expanding on it, I got a great nugget of information that feels like a real super positive piece of information that really lifts my spirits and hopes.

One of the great downers of being triple negative is the fact that something like 60% of women have a recurrence of breast cancer within the first two years after diagnosis and treatment. Cancer recurrence is not a good thing. I can reduce my statistical chances of distant or local recurrences to a certain degree, but the long term statistics for us triple negative girls is downright GRIM (and depressing!). He was able to enlighten me as to why. It turns out that the vast majority of triple negative women do not discover their cancer until the cancer is much more advanced than in my case. The tumor is usually bigger upon discovery and it is very common for the lymph glands to be much more involved. So, here I've been figuring I probably had something like two or three years left to live. What he's explained to me is that because I found my tumor at a much smaller and earlier stage, and because on my Sentinel Node Biopsy I had a very convincing negative for involvement in the lymph system (ergo, the cancer is not yet actively in my blood stream), I have something like a 90 to 95 percent chance of living 5 or more years cancer free.

Now I don't know about you, but this definitely sounds like a much better deal! Now this is definitely based on his knowledge and opinion and the uncertainties of life. He can't guarantee that the cancer won't reoccur, but I like 90 to 95 percent a whole lot better than a more than halfway chance of being dead in three years.

The radiation onc has been the single most important person so far in helping me to figure out what treatments to consider next. He has a careful decision tree with easy pros and cons. Today he was able to give light to hope. How often can someone do that?! I will not make my final surgical decision until after I've talked with the folks at MD Anderson, but I have a reasonable plan and strategy for what comes next, providing no new information comes in to change my knowledge base.

The SPEED with which a cancer patient is pushed through the chute is astonishing, and yet the doctor with some of the best information is last in the information chain. If I wasn't a contrarian, if I wasn't a information hound, if I wasn't assertively seeking and self-advocating for myself, I would have never met this man until after I had made uninformed decisions! I feel very blessed to have serendipitously met him and been able to pick his brain and benefited from his knowledge and experience. It is only an accident that I got this information. If god is in the details, then god has touched my life by allowing me to encounter this man. Today, hope was hatched in a small room in western Georgia and a doctor with the strange name of Dragun midwived it.


Anonymous said...

Wow, such great news, Ann, so very happy to read about it!

Anonymous said...

That is GREAT news. I am so happy for you. Blessed be the contrarians! There is nothing like making an INFORMED decision.


meem said...


Susan said...

You are very smart to be so persistent in your quest of knowledge before making decisions. I have been guilty of taking physician's advice (assuming they know what they are talking about) without question, but then I have yet to have any really big decisions before me.

I am so glad you met this informed doc and so glad that he is willing to share his knowledge with you. So many physicians are watching the clock and worrying about meeting their billing quota (or that is the impression some give).

Love your analogy:

"hope was hatched in a small room in western Georgia"

Have a great day!

carolyn said...

Joann, I feel so uplifted for you and you quest for "wellness" -- that is wonderful that you got such hopeful news. Isn't it wonderful to have a doctor who explains things in detail and gives you HOPE. What a wonderful word HOPE -- especially in this Christmas season -- I will be praying for more good news from you.. "angel" Carolyn

carolyn said...

Joann, I am so encouraged that you have received good news. How wonderful that you have found a doctor that explains things in details that one can understand -- and that you have been given HOPE. HOPE what a wonderful word especially in this holiday season. I will be hoping and praying for more good news from you
"angel" Carolyn

Liz said...

Congratulations to all of you!

Liz said...

Congratulations on being a new grandmamak!

Liz Key said...

Congratulations on being a new grandmama for the 2nd time. You are truly blessed.