How to Cross a Street (among other things)

February 16, 2010

Dear All ~[For those I haven’t managed to talk to or email in the past week, my apologies as all this is going to be a bit to absorb.  For those that were ‘in the loop’ from early on, good news yesterday.]A week ago on Monday, after a mammogram and ultrasound,* I was told that I had a tumor in my left breast.**  That same day, after hyperventilating a bit, losing all ability to not only utter, but even conjure, words, producing copious amounts of mucus, tears and phlegm, I met with a surgeon.  He believed it was a very rare type of tumor, a phyllodes tumor, as it had progressed so quickly, was ‘floating’ (i.e. not attached to other tissue), had smooth edges and was so large.  The only good news this presented was that phyllodes tumors are most often benign.  The good news/bad news of this news was that phyllodes tumors do not typically respond to chemo or radiation – good news as it makes treatment choice pretty simple, bad news as it limits your arsenal should you need it.

Last Wednesday I had outpatient surgery to remove the oval-shaped tumor, already 4 cm long.  Surprisingly, it was less painful (yet far more exhausting) than I imagined.  Never even picked up my script for pain meds.  (Then again, hard to pick up pain meds when you are asleep for about 40 of 48 hours.)

On Friday, as a consistent wakefulness finally took hold, I spoke with my surgeon who, upon the receipt of my expedited pathology report, told me that the tumor was malignant.***  (For those of you like me with no loved one to give you a reason to keep them straight, “malignant” is the word you don’t want to hear – “benign” is the good one.)  He explained that, at a minimum, he had to go back in and excise more tissue as well as take a couple of lymph nodes.  These would be biopsied while I was still on the table and, if they did not come back clean, additional lymph nodes would have to go.  I spent the rest of the weekend knocking friends and loved ones over (into the arms of other friends and loved ones) with this new feather thrust upon me.

After much research (completed, digested and disseminated by those nearest and dearest) and with the expectation that a specialist would be required to deal with this very rare tumor, now made even more singular by its potent status, champions were mobilized to make phone calls, tap on shoulders, send out feelers and ultimately, advocate on my behalf for yet more information and referrals to aid in the decision I had to face.  The results produced and inroads blazed on my behalf are humbling.  (To those of you insisting that Presidents Day is the lamest excuse for not answering a call when answers are needed – thank you!  I’ll take your side of the rope in a tug-of-war battle any day! Now, on with the story…)

Today, towing along a far-too-experienced-with-cancer friend to ask (intelligent) questions, take notes and shoulder the responsibility of translating the information for anyone and everyone that needed to hear, I had a meeting with my surgeon.

(I know. I said there was good news. You’re wondering, “Did I miss the good news? This all sounds awful.”  Here it comes.)

Within about 3 or 4 minutes, our collective confusion mounting, it was finally made clear that I do not have the dreaded phyllodes tumor (nor the Dread Pirate Roberts for those Princess Bride fans out there) – I just have the same-old, same-old, run-of-the-mill, “normal”, albeit malignant, breast cancer that afflicts about 80% of individuals**** with breast cancer.Did you ever think you would hear of someone relieved to hear they have malignant breast cancer?!

Yeah, me neither.  (And apparently, neither did the Starbucks employees I so cheerfully tried to explain my happiness to.  “I have breast cancer! Just plain old breast cancer!  Isn’t that great?!”)

So, here’s where things stand as of right now.

I still have to have more surgery.  The lymph nodes have to be checked and, if they don’t pass the test, I’ll have as many removed as seems necessary.  Good news?  Don’t have to have this surgery yesterday – just asap and preferably within the next 2 weeks.

I have the option of having the breast re-excised (again, now that they know the tumor was malignant, they want to be sure the “field” is “clear”) or, to have a single mastectomy.  Good news? The reconstruction process, in the past, almost always done after the surgery, can begin during the same surgery.  I will meet with a plastic surgeon this week so he can explain what his job would be if I go for this option.  More good news? A “Ta-ta to the Ta-ta Party!”

Regardless of what I choose, I will undergo chemo as follow-up.  Good news?  Radiation would be off the table if a mastectomy is done.

Obviously, these are not decisions to be made lightly (hoping you don’t think I’m not taking this seriously just because of my “Ta-ta to the Ta-ta” suggestion). And after the surgery is done, I still have to work with an oncologist to determine if additional, and immediate, testing is advised. Further screening will be heavily driven by the lymph results.  No matter the outcome however, I will spend the rest of my life paying, and having doctors pay, a whole hell-of-a-lot more attention to my body.

(More good news?! My insurance from Rice Univ. totally rocks!  100% with no co-pay or deductible for last week’s surgery. On top of that, my short-term disability coverage pays at 100% for up to 12 weeks.  Pretty decent plan, eh?)

So, that about sums up the past 8 days of my life.

What’s up in your world?

~ Tina
* I discovered an already large lump the week of January 11th that was not there a week before.  Turns out, cancer can grow damn fast!
** Did you know that 80% of breast cancer appears in the left breast?  Not that you shouldn’t check the right but, kind of like crossing a street, left – right – and left again before crossing.

*** He also did tell me it was not a phyllodes tumor.  Unfortunately, he told me this after he said the dreaded word – malignant – and I did not catch this detail.
**** Guys get breast cancer too – and no, you don’t have to have “man-boobs” to get it!

 Surgeon: Dr. Mark McBath

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