Boob Binder

Boob Binder

By Kathy Reschini Sweeney

Had my appointment with the surgeon yesterday and they gave me a binder - classic 3 ring style - with tons of information and room for me to insert my own stuff.  I love this thing.  Maybe it's all the years of school or a hint of OCD, but I love files and binders and all kinds of other organizational stuff.  It makes me feel better.  Why?  Because knowledge is power.

[Note to GoT fans - nod to the Master of Whispers and Littlefinger and good thing we don't have that raving bitch Cersei around to change that dynamic, huh?] 

Which is good, because this summer is not going to be all picnics and frolics.  I will have surgery on June 17 and then 8 weeks of radiation 5 times a week.  No idea about chemo or anything else until we get the surgical results.  HEY - it could be much, much worse - compared to what many Warriors are going through, this is a freaking walk in the park.  I'm not afraid and I trust my surgeon completely.

I went in expecting to discuss scheduling an MRI and genetic testing.  I knew there was time because the pathology report showed the tumor was very slow growing (growth index of Ki-67 - 5% for those of you who unfortunately speak this language).  I was also ready to push for a mastectomy rather than a lumpectomy.

After a long discussion with the PA and the Surgeon, and a review of more detailed pathology and current studies on MRIs, everything changed.

I have to point out that here in Pittsburgh, we are so blessed to have an amazing cancer center.  Funded by the Hillman family (thank you) and supported by the University of Pittsburgh Cancer Institute (they do extensive research - including a study on my specific type of cancer that was just published in March) and UPMC, we have access to an incredible number of resources and a stunning amount of information.  (A whole "Cancer Sleep Clinic" - watch this space for more on that).

[A note on MRIs - they used to be standard procedure in cases like mine.  In a nutshell, the problem is that MRIs kick out a ton (85%) of false positives.  Even with than in mind, if something shows up, they HAVE to biopsy it to make sure.  This results in a lot of unnecessary biopsies and time lost.  So docs are being much more circumspect about ordering them.  Now back to our ongoing blog.]

I won't bore you with the details, but suffice it to say that after the discussion, the surgeon told me (with a smile, thank heaven) that she felt as if she'd just completed an oral exam.  I also happened to glance ~cough~ at my own chart, and saw the note: "Lawyer but Funny".  That may be my obit when the time comes.

Naturally, I took notes the entire time I was there (on a yellow pad that already has the 3-hole punch - yippee!) and they are in my Boob Binder, along with all the full pathology reports they printed out for me, and tons of other good stuff, including the secret code for the special bra store (another blog I'm sure).

SO - lumpectomy and surrounding tissue surgery June 17th followed by 8 weeks of radiation 5 times a week.  Is that a lot? I have no clue, but I'm having lunch with Mary Alice tomorrow, and talking more with my Godmother later today.  They both went through it.  I will be taking notes.

While I'm in surgery, they will also do something called a Sentinal Node Bioposy.  This involves glowy blue dye.  If my lymph nodes light up like a smoking room in the '70s, they come out too.  I am going to find a blacklight and an Elvis poster on velvet to prepare my boobs for the experience - they were much smaller in the 70s and probably don't remember. 

I also need to mention that the surgeon said I have the 'perfect tumor' for a lumpectomy.  My sister's response, which is undoubtedly reflective of the entire family: "Of course it is." ;)

Tons of improvements in the techniques even from 2 years ago, but more on that later.  Here is the most stunning piece of information I heard yesterday: given the rate of growth and the size of the tumor, it has been in there, growing undetected for TEN YEARS.  Ten.  Years.  Were they finally able to spot it because of its size (8mm) or because the 3D mammogram technology is that much better than the regular digital?  Who knows.  Here is what we DO know:

1.  GET YOUR MAMMOGRAM

2.  Please start praying - for those of us who say Novenas, the start date will be June 10.

3.  This is not going to kill me.  Not so long ago, that was not a certainty.  Thanks to the Warriors who have battled before us, we have more information and better technology every single day. Support our Warriors - do what you can to help us find a cure.

Comments

[Renee in KS]

You have the strength and fortitude and all the other attributes of a warrior! You are facing this with dignity, grace and as always, humor. As Mom would say, love and prayers!

[Pam aka SisterZip]

Of course you aren't going anywhere. The world would go dark and cold and shrivel away without you and that isn't going to happen. Although I'm not Catholic, I will start praying for the surgeon's hands, for the hospital staff and for your boob. Couldn't hurt, could it?

Many people on FB and the old blog have told you, for years, you should write a book. This just may be your chance.

Pam Purtle

[Nancy Martin]

Can I just say that the idea of a surgical Trapper Keeper makes me---the office supply junkie--extremely happy. Onward and upward, babycakes!

[Jodi Lisle]

Kathy, radiation therapy can be very hard on your skin as you might well imagine. And it's effects are cumulative. That all said, get your doctor to order Biafine for you and start it just before you start radiation. Follow the instructions for radiation therapy and use it three times a day every day until after the radiation is completed. My friend in Houston just went thru this same thing and used the Biafine. Her doctor was amazed at how well her skin tolerated the radiation. Here's a link to check out. http://www.drugs.com/drp/biafine-topical-emulsion.html

[Pamela Clare]

I'm so impressed by how on top of this you are! I'm still so overwhelmed that I can hardly look at my pathology report.

Ten years! That is amazing.

I was told that the first cell that became malignant in my tumor probably did so four to six years ago. Mine is relatively slow growing, but is 2cm (not mm) and didn't show up on last year's mammogram. I've always gotten them regularly, like a religion, but it just didn't show up.

The cells are transforming to cancer at a moderate rate, which means I guess that it's faster growing than yours but still not a fast-growning tumor. They offered me a lumpectomy, but I am opting to have both breasts removed.

I wonder if my pathology report has the same info that yours does. Also, I wish we had a kick-butt cancer center here. I keep running everything my doc tells me past a family friend who is a fabulous oncologist, but that's not the same thing as having the resources of a fantastic cancer center.

Thanks for another informative (and funny) blog. The "lawyer but funny" part was a kick. I'm sure mine says "overly emotional psycho writer."

[Laurie]

Your attitude is the best treatment. Insist on the genetic testing. You have a daughter and it will be important to her. Thinking of you, Laurie

[Karen in Ohio]

Well-informed is well-armed, and you'll be as prepared as possible by the time of your surgery. Especially with the black light therapy for your too-young boobs. You crazy woman.

Praying and laughing--a good combination for your good health, dear friend.

[Kathy Reschini Sweeney]

I should clarify that my 1970s Boobs were very, very happy. I just don't think their best memories include black lights...;)

[Marcia Talley]

From warrior to another ... you are gonna nail this! I had a modified radical mastectomy with complete removal of all my lymph nodes on that side, followed by chemo. That was in 1983 and I'm still here to tell the tale. Like you, I benefitted from a doctor who was up to speed on everything new in the field and he put me on a protocol that he knew, from trials in progress, was working.

Hug Mary-Alice for me, Kathy! Us boosters need to stick together.

[Marcia Talley]

That's "boob-sters." Damn you, autocorrect.

[k8]

Is the secret code for bra stores anything like the secret menu at Chinese restaurants? That's where all the good bras are?

[Kathy Reschini Sweeney]

I don't know yet -- but I will! The question is - will I share the secret information? ;)

[Storyteller Mary]

I could see you as medical advocate for sisters in need -- so thorough and sensible -- and a sense of humor helps, too. The Decent Exposures people who make my latex-free clothing have told me that their very comfortable bras are often recommended for post surgery.
Hugs, gentle ones, and much love to you.

[Gaylin]

I will keep sending good thoughts to you, all the way from Canada.

Just got home from vacation and a letter from the BC Cancer Agency - telling me I need to go get my boobs squished. Well, not those exact words but I will make the squishage appointment!

After all that radiation maybe you will be spider-woman! Or glow in the dark . . .