Thursday, August 18, 2011

Calling James Brown

Because doctor's got a brand new bag!!

The meeting yesterday was perfect. And informative, so take note, ladies.
In brief, I am lucky enough to have the head of breast surgery as the man who will be operating on me. He has no ego, no agenda; he has been practicing medicine long enough that he has nothing to prove.
That being said, had I not been well informed, articulate & confident in my decisions, I am sure that the "algebra equation" would have ruled the day.

After he went over the specifics of my diagnosis, he began with "We will be doing an extended lumpectomy..."
No sir, & here's why I don't want that. At which point, he replied, "Yes. I can see your reasoning for that. All right, so we can cancel radiation. We'll be doing a sentinel node removal..."
No, sir.

A sentinel node removal is a standard part of surgical cancer care; they remove a lymph node nearest the surgical site, to test & make sure the cancer hasn't spread. If there are cancer cells in the node, they keep removing lymh nodes until they test cancer free.
This is a viable choice for most cancers, but it leaves the lymphatic system compromised and vulnerable to the possiblity of lymphedema.
The lymph system is the liquid cleansing system of the body, and part of the immune system; lymphedema is a backing up of the lymph fluid, usually into a limb, creating a puffy swelling which is uncomfortable, and can create further damage to the tissues if normal drainage is not restored.
One of the things I do is Lymph Drainage Therapy, so I am very familiar with what is it like living with lymphedema, and how challenging it can be.
Since I have a non-tumor based cancer, there is virtually no chance that this cancer has spread, hence, no reason to potentially damage my lymph system.
His reply was "Well, you're right. The odds are only 1 or 2% that it has spread. So no sentinel node removal.

Now, we very often put women on Tamoxifen or a similar drug..."
No, sir, we won't be needing that. Again, since this is a non-tumor based cancer (tumorous cancers feed on estrogen, hence the use of estrogen blocking drugs, such as Tamoxifen) there is no need to take a drug which has, as its main side effect, endometrial cancer in 7-10 years after use.
His relpy? You guessed it: "Yes, I see your point, so no post surgical drug therapy.
Do you want a reconstruction? (yes) Good. I will arrange for you to meet with the plastic surgeon to choose your best method of reconstruction. I will save as much skin as possible to allow for the greatest coverage."

When he called his clinic manager in to arrange for everything, and went over all the steps for her, her eyebrows went higher & higher.
He ended with "Ms. Daniels is very well informed and has thought about all of her options. This is the way we will go.", and shook my hand before leaving the room.
She told me that one of the appointments she would be setting up for me would be with medical oncology (chemo, Tamoxifen etc) because my choices were "so far from the standard care" that they would take a bunch of heat from the head of medical oncology unless they heard it from my mouth.
No problem.
But isn't that interesting? If most women had gone in, they would have come out with an appointment for an "extended lumpectomy" & a sentinel node removal, radiation afterwards, & possible Tamoxifen.
And, I am not being unkind here, but that means: a surgically altered breast in a very profound way (!!), possible damage to their lymph system, a series of radiation treatments (radiation is like microwaving; it heats from the inside out, hence the tissue damage & scarring after radiation) & then, possibly, an estrogen blocking drug for 5 years. (the standard of care with those drugs) Which, if you are still menstruating, would slam dunk you into menopause, & would create the need to monitor you for many years to see if there are any side effects.

I am telling all the details, just so you ladies can have a deeper understanding, should you ever need to have it, not to villify the standard of care.

So! Excellent outcome!! Of course, doing a mastectomy & a reconstruction on the same day = two major surgeries in a day = a longer recovery time = more time off of work...Oddly enough, I am not stressing about what that will mean monetarily.

Let grace find its way to me unobstructed.

It is 104 degrees today. The shadows of the tree branches on the driveway are like lace.
I am sleepy and peaceful and can feel the subtlest shimmer in my body, the shimmer that happens as the unknown is approaching...But here is the fascinating part: it is not the shimmer of waiting, in a movie, for the vampire to leap out, or at the top of the rollercoaster, looking straight down to where you will be plummeting shortly...
It is the shimmer of standing in the airport, waiting to catch sight of the beloved, who has been gone for so long, knowing that the sight of their face will make your heart race before you throw your arms around them.

Isn't that strange??
I am smiling. It makes no sense, but it feels good.

The Adventure continues.


Frank said...

Thanks for helping to inform the populace. If I ever face surgery or the like, I will become very, very well educated, so I do not get run thru the mill. Thanks for being Awesome, Inspiring You!

mrs mediocrity said...

It doesn't have to make sense, I am glad you are smiling.
I am so glad he was someone you felt comfortable with, I totally agree that it is too bad that the system works the way it does, that you have to be your own advocate these days.
IT seems that being informed is half the battle when it comes to figuring out the best treatment.

d smith kaich jones said...

there is an australian aboriginal saying - the more you know, the less you need.

this makes perfect sense to me, and i believe there is a place for you as a liason between doctors and newly diagnosed women. that feels right to me. i have felt for years that such positions should exist. you are my proof.


and still sending good vibes and prayers your way.

Linda Teddlie Minton said...

Holy Guacamole, Skye! Thanks so much for posting about your experience. I had my suspicions about this type of "standardized" treatment. Enough said. Keep smilin' ... you're the best at it!

skye said...

What an interesting idea, Debi...

Jean J. said...

God, I am so proud of you! And bless you for spelling it out as you have Skye - this information could help a LOT of women. You are such a strong woman, and yes, I am so happy that you are feeling strong and good at this point.....never is the maxim "Knowledge is power" more true when facing the medical establishment about the car of our body. xoxo

Anonymous said...

You are so inspiring, intelligent and poetic. What a radiant being you are! I love you more than the BEST EVER quilting supplies!

skye said...

Oh, Anonymous! You know the way to my heart! ';-) That is a lot!! <3