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Wednesday, April 11, 2012

Met with oncologist(s)

Yep, I've been passed around all morning which wasn't necessarily a bad thing, just disconcerting as they were all trying to figure out which area of oncology I belonged in. Len & I headed into the Robert H. Lurie Comprehensive Cancer Center at 8:30am. We got right in to see Dr. Peabody, the ortho oncologist. After reading my MRI he concluded that it was so deep in my pelvis and so close to too many organs that he called in Dr. Bilimoria, a surgical oncologist. They cannot tell much in terms of whether or not is is cancerous without a biopsy. I asked if they could do a PET scan first, before cutting, and they said no, that type of test will not be as conclusive as a biopsy.

Here's what they do know:

It appears to be a desmoid tumor, a fibrous aggressive fibromitosis. It may be attached to my bowel or colon. It is very deep in my pelvis, behind & under a lot of important organs, & is basically pushing everything over as it grows, my colon, rectum & vagina included. So a rectal exam was in order...don't I look thrilled? (I was pointing at a suspicious stain...)



It was taken using the "bleak" setting on my phone...appropriate, no?

That exam revealed that it doesn't appear to originate there but he could feel it with the tip of his finger so it's, ahem, about a finger deep (apologies in advance to any of my former high school students and anyone else who never expected to be reading about my rectum).

He also checked my lymph nodes & belly but felt nothing.

He said it was not likely to be in the colon.

I was sent to give blood to check for clotting ability in advance of surgery which will probably be next week. It will be performed by an Interventional Radiologist after he has had a chance to study my scans to figure out how to even get to it for a biopsy. They want to avoid taking out the whole thing right now since that would involve major abdominal surgery so they will basically take a core out for testing.

Then my file will be reviewed by the entire oncology department in a team meeting to discuss the best treatment plan.

Possible treatments can be surgery to remove the mass and all affected tissue/organs, hormonal therapy, chemotherapy, and/or radiation to shrink it.

The comforting words I'm holding on to from the meeting today were: "we don't anticipate a huge problem" in response to my declaration that this had to be fixable because I had 2 toddlers at home who need their mama.

They will call me either Friday or Monday to schedule the biopsy.

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7 comments:

ashley said...

I know you don't know me, I've commented a few times on your blog, but we have some things in common....Like you, I am mama to an adorable Chinese toddler :) and many years ago, I had major abdominal surgery to remove a mass on my ovary and abdomin wall. I won't go into to all the details, but after lots of doctors and tests and scary sounding diagnoses and surgery, I am happy to say that I am totally healthy and have been cancer free for a long time. Not sure if you'd ever want to chat via email (is it on your blog?) but I would be happy to anytime and offer support. I am no expert, just a mama who has walked a similar path. You are brave and funny and such a great mama! Hang in there, waiting can sometimes be the hardest part.
best, Ashley in Colorado

Lynn K said...

Positive words. Positive thoughts. Positive, positive, positive.

xxxxx

Elizabeth said...

I've been thinking of you all day and just checked after the bell went. What a lot of information to take in today! It sounds like you have a very strong medical team and that they aren't wasting any time. The PET scan comment is interesting. Keeping you in my thoughts that the surgery for the biopsy isn't too major and invasive. I sure wish I was able to do something to help. Keep up those positive thoughts and keep us posted. Along with your family and friends, remember you have a whole blogging community rooting for you as well. A great big hug to you my blogging buddy.
Elizabeth

PinkDevora said...

I've been thinking of you quite a bit and am sending good vibes your way. Kate and Lucy need their Mama! Hugs.

Heather H. said...

Hi Lisa. I'm keeping you in my thoughts and prayers.

Hugs,
Heather

Jodie said...

Over the years (and especially when my mom was sick) I would hear/read others comments of staying positive, keep your chin up, etc. I always thought that was about the craziest thing ever! How can you possibly be positive and keep your chin up when facing such a situation? Then when I was diagnosed with MS one of the VERY FIRST things the doc said to me was, "Jodie....more than anything, avoid any and ALL stress as much as humanly possible!" Again...I thought he was pure NUTS for even making such a crazy statement. Unfortunately, it wasn't until I went to a therapist at Mayo a few years ago that the "no stress" statement was fully explained to me and finally made sense. Have you heard of a stress fracture? Yeah...it happens a lot in toes and feet. And it's exactly what it sounds like. Happens a lot in dancers...especially when they're rehearsing long hours, etc. She brought up that example along with many others ailments in the body that are specifically caused by nothing other than STRESS! Being in the medical field I guess those things should have been crystal clear to me from the very beginning, but they weren't. I was scared, upset....and yes my friend.....STRESSED beyond belief wondering how in the CRUD I was supposed to continue being a GOOD single mom while dealing with such physical and financial challenges. Looking back I'm quite certain that because I was unaware of how worry and stress were ruining me and making the MS symptoms worse...that that is the very reason why it has taken me this long to get to a place where I can finally function.

Why am I saying all of this? Friend...I just wanted to gently remind you (because I'm positive you already knew/know all of this) that the positive thoughts, and any and all activity that would relieve any stress and worry are going to be a serious key in helping your body through all of the changes. (surgery, etc) You already eat healthy. You're very familiar with yoga and it's healing power with the deep breathing, etc...and I could go on and on. So while at a time that is uncertain and yes, even scary....and people say things like, "Stay positive"...please know that it's not just a "flip comment" simply because they don't know what else to say. It's because we want to be a positive support to you and your family while on this "bend in the river of life."

Know that you and your BEAUTIFUL family are in my heart and prayers DAILY, my friend!!!!

xoxoxoxoxoxo :D

Lisa said...

Ashley--yes, my email is on my blog in the About Me section...I think you have to click on it to access it.

Elizabeth--The PET scan just has a limited ability to identify everything. Apparently some types of sarcoma will not show up as easily on this scan.

Jodie--I am a firm believer in the mind/body connection. Thankfully, the girls keep me distracted enough that I don't have time to dwell on this.

Thanks everybody for keeping us in your thoughts! It is an amazing thing to feel so much love directed at you.

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