Tuesday, November 6, 2007

Information overload

Surgery details:

Dr. S was great today about answering all of our questions. We've scheduled the surgery for Friday, December 7, at 7:30 in the morning. I'll need to go to the hospital Thursday night for some injections, but I'll at least get to toss and turn in my own bed. The surgery should last around 5 hours, then I'll need an hour or so to wake up. I should get to go home on Sunday or Monday, depending on how I feel.

Dr S. will do a sentinel lymph node biopsy on the left side (to make sure that the cancer hasn't traveled that way), and then a 'simple mastectomy', meaning she will just take out all the breast tissue and leave the lymph system alone for the most part. On the right, she will do a modified radical mastectomy, which means she'll remove all the breast tissue and the cluster of lymph nodes in my right armpit. Once she is done, she'll turn the surgery over to Dr. L, who will add the spacers for the implants and close me up.

Once I get home, I'll need to deal with drainage from the surgery site (eeeeeew) for about a week. I'll also start physical therapy to help me figure out my new front-to-back balance, and start an exercise regimen to prevent lymphedema (swelling in the right arm from the removal of the lymph nodes). Dr. S indicated that I should be mostly back to my old self in a few weeks. In her experience, the patients who are seriously incapacitated post-mastectomy are those who do more extensive reconstructions (using the tummy tuck, for example). My surgery is - relatively - straightforward.

In parallel to my initial recovery, the pathologists at LFH will go over the tissue from the surgery with a fine toothed comb to see how much active cancer remains, and whether any active cells still circulate in my lymph system. This analysis has major implications for the next part of my treatment (see chemo 2, below).


Possible Chemo round 2:

There is a new paper in the Journal of Clinical Oncology ( Symmans et al 2007, 25:28 p. 4414) looking at predicting disease free survival post neoadjuvant chemotherapy based on an index of residual cancer burden. (translation: how much cancer is left after having chemo before the surgery). The numbers (for recurrence) look very high for someone in my situation. We know that the tumor remains in the 5-7 cm range (about a 50% reduction from its original size on an 8 cycle AC/T regimen). What we won't know until after the pathology reports come in after my surgery are: are there lymph nodes still involved (probably yes, since they were heavily engaged at the beginning), and how much of the remaining tumor is necrotic vs. still viable.

Dr. B's concern is that based on the aggressiveness and size of the original tumor, I am probably in a category that gives me a high risk of recurrence (though hormone therapy should take that down some). My response to the chemo has been good, but the tumor hasn't shrunk away to nothing. She is considering having a 'thought leader' take a look at my case to see if another round of chemo could lower my risk of recurrence.

I am trying to wrap my head around this new information. Adding a second round of chemo seems pretty unusual (certainly off protocol), but I don't know how far out there it is, if it is really appropriate in my case, and what other factors I would need to consider. We have so far made choices (going for the bilateral mastectomy, for instance) to reduce the risk of recurrence, but I don't really have a good sense of what the floor for that risk might be.

Coming soon, at the Gazmoy Cancer Chronicles:
Next week - my last round one chemo treatment!
Thanksgiving week - planning with the radiation oncologist!
Zack figures out visits for the new year!

5 comments:

Berit and James said...

Lynn,

That is a lot of information to take in, and many if's to consider... You are so brave, and your strenght will carry you through whatever comes next. Know that.

I look forward to celebrate the end of round one with you on Tuesday when I come up. Will give you a ring to check in and make plans this weekend.

Big hug to you,
Berit

Anonymous said...

Dad and I admire your strength and courage. Anthing we can do to help, we will do. You just need to let us know. We love you both.

mom

Anonymous said...

I can't even fathom trying to digest and understand all this information, much less make decisions. The community you have developed to support you and the doctors who are involved are all awe inspiring, as is your ability to plow through this experience with your head held high (when it's not in a toilet) and sense of self intact. You have never ceased to amaze me, lynn, and you continue to do so. I love you.

Adam said...

Both of you,

I am a man of MANY words who likes to joke in times of fear, trepidation, and right before I wet myself but I have been diligently reading over the past months waiting for the moment to present itself and fear it has not. I was recently able to tell a close friend, who now awaits a heart transplant, on his way to a Boston Hospital expecting to receive an LVAD, in the words of a British friend, "Keep your pecker up." I will extend you the same advice but I am still tongue tied.

You both are digesting the information presented as I would expect you to and I know that along with the braveness comes the fear and unknown that you are also working through quite admirably. You leave little for those of us sitting in this theatre of your life to say. We frown, we smile, we weep, we hope, but there is very little to say.

I read the comments from everyone and they all resound with the same empathy, the same anguish, the same fears you feel yourself. As if you have one big familial extension of yourselves. But in the end, you both sit alone taking it step by step. We admire the courage, the ability to envision the future, to accept the reality of it all and to still push on.

If there is such a thing as deserving to persevere, you have shown it without a doubt. Maintain your outlook, love of life, and your love of one another.

Best wishes from a fat man envious of your ability to have insurance cover your mastectomy, they've refused my requests twice.

Eg

Anonymous said...

The drainage is pretty gross, but, in my experience, not painful or debilitating in any way. Depending on where they put the drains, they may get in the way if you sleep on your side, but I think you end up sleeping on your back anyway. Anyway, my point is: gross, yes; horrible, no.