This morning Richie went with me to our first consult with the doctor who will handle my radiation therapy. His name is Dr. Dvorak. He is absolutely awesome. Great bedside manner, very informative, very patient.
He explained the order of the treatments (chemo, surgery, radiation), why they recommend radiation therapy at all, and the possible downsides of radiation.
Apparently, up to, say, twenty years ago, if a woman (or man) developed inflammatory cancer, it was treated like any other breast cancer. Mastectomy. This treatment generally had a "poor outcome" for Inflammatory Breast Cancer (IBC).
So, post-surgery radiation got added to the treatment regimen. Generally, this two-fold treatment also had a "poor outcome."
If you're wondering what this "poor outcome" is, it's exactly what you think. Enough said on that.
Then the docs decided to add chemo at the start of the treatment. Thus was born the three-fold treatment. Aggressive Chemo-mastectomy-radiation. This generally has a better prognosis. This is the treatment course I'm on.
The treatment has to be aggressive like this, hunting down little rogue cancer sells, because IBC is a particularly aggressive cancer that travels via the lymphatic system. (Quick biology fyi for those of you who don't know or don't remember. Your lymphatic system resembles your vascular system. The channels course through your body, like your veins, but they carry disease fighting fluids instead of blood tissue. This is why when you get sick, your lymph nodes can swell. One of the main differences between the two systems is that the lymph system, unlike the vascular system, has no pump--aka heart.)
So, with this in mind, you can imagine how this cancer spreads. A malignant cell multiplies first in the breast tissue (I think?!) then the infected tissue leaks into the lymph nodes under the breast skin and finally permeates the skin on the chest. This is why the skin starts looking kind of pink. From there it travels into the lymph nodes under the arms, then rides the lymphatic system down the breast and up the chest wall--and it can go on from there, using the very system in place to carry disease fighting power to all parts of the body. Usually by the time people discover they have this cancer, it has travelled quite a bit, and is a level four. (Last stage)
Mine, however, was a level three-b, a miracle in itself.
I'm going to take you back to my initial diagnosis at this point. In my case, my diagnosing doc didn't think I had IBC. BUT, (luckily?!?) the IBC, being an aggressive bugger, latched onto the tiny, just-forming ductal carcinoma in my left breast. Now, ductal carcinoma is a notoriously slow growing cancer. As my mom explained at the time of my initial diagnosis, this cancer generally manifests as a little pea-sized lump. (She had this type of cancer twice, as well as another type, a second time) It is self contained, and is called "insitu" which translates loosely to "self-contained." Once it "pops" (think of a popcorn kernel) the cancer cells begin to travel, but this doesn't usually happen for over a YEAR. Am I losing you yet? :-) OK, So when I made the appointment with my doctor initially, I did so because my breast was pink. I had no lumps or bumps, therefore I wasn't in a great hurry to see her. I figured the odds were I had an infection, and the pink would go away and I would end up canceling the appointment that I had to keep moving to accommodate my work schedule. Over the month it took me to get in with the breast surgeon, however, the pink didn't go away. I started to worry I had IBC. Yet I also developed a lump. Over several WEEKS. IBC has no lumps. I was confused. This pointed again to the infection scenario.
Moving on. I asked my doctor about IBC right away, and right away she said she didn't think I had IBC, because my symptoms didn't match the usual symptoms--i.e., my breast didn't look that bad, and there was a lump.
But the lump itself concerned her, even though the lump we found, being rather large, didn't seem like it could be Ductal Carcinoma either, because it was too large. (Remember, ductal cancer manifests slowly, growing into a self-contained pea size over a year or more, and this thing had shown up over a period of weeks) She sent me for a mammogram, and followed up with a biopsy.
I think when the biopsy of the mass came back "invasive" ductal carcinoma, she thought, "Hmm." Because, why would a slow growing cancer show up and two weeks later already have blown past the "insitu" phase?
Answer: Inflammatory Breast Cancer.
I explain this to highlight just how damned aggressive this cancer is. In general, breast cancer is best treated by treating the post-op area with radiation to kill off any remaining cancer cells. But there is a down side. Enough to make me want to turn tail and run the other way. Some patients opt to take this "wait and see" route, skipping the radiation. Only I really can't because of the aggressive nature of IBC. Basically, if the docs don't get all the inflammatory cancer cells with the chemo-surgery route, and I skip the radiation, by the time they find the recurrence (30-40% chance likelihood) the docs will have a hard time stopping it the second go-round. (The "bad prognosis" outcome.)
Sigh.
Onto the nitty-gritty treatment details, upside, and downside. March 23, two and a half weeks after my surgery (March 1?) I will go in for a cat scan and node mapping. They'll put tiny little tattoos on my skin to mark the areas they will shoot with the lazer. A week later, the treatments will begin. Monday through Friday, for six and a half weeks, I'll go in for a mini suntan. Other than being really time consuming, this isn't supposed to hurt all that bad. It will rear its head as...tada!...fatigue. My current shadow.
The radiation will cover the skin, the small amount of remaining breast tissue, the lymph nodes under my arm. My neck. My chest wall. Then I will be done with "treatment," with only surgery left down the road.
Doesn't sound too bad. Except...it can affect my heart, since part of the beam may hit my heart. which can lead to increased chances for heart attack down the road. The good news is, this is the least likely problem for me due to my over all good-health.
Then there's the possibility it can leave my skin funky so reconstruction doesn't come out right. It also means I have to wait six to nine months for reconstruction surgery, while the irradiated skin heals. This just sounds so long to be stuck in this cancer phase of my life when added to the time already invested.
Radiation can damage my nerves running down my arm, to affect the use of my hand.
Radiation can affect the remaining lymph nodes under my arm (cancer and surgery will have already left their mark), causing scar tissue so I get a back log of lymphatic fluid. The arm swells in this case--a condition known as lymph-edema.
These outcomes are all uncertain, and so far down the line. And when compared to death, they shouldn't seem so bad. But they do. I don't want this to go on and on. I don't want to wear this disease like an ugly dress. I want to get back to being active. If I get lymph-edema, I won't ever be able to lift heavy things without triggering a reaction. And I just won't know till I know. It doesn't always happen, but it happens more than a little bit of the time.
These are all long-term, life-style changing ramifications of radiation therapy. In my heart, I want to say "up your bum" to it. But then I think of Richie, and family and friends, and I know I won't run away from the treatment because...the because is obvious.
My heart is heavy. But I close my eyes and remind myself every day is a new day. I only have to get through one day at a time, like everyone else. This I can do, with God's grace, He is a lamp to my feet on a starless, moonless night. He light's my path through a thicket of brambles, showing me the direction I should take and clearing the way for me. He sends angels to hold my hand, to hold me up, and to distract me from myself at times :-) something we all need on a regular basis.
Today was chemo day and I slept through almost the whole treatment and I think I will sleep again soon. Thanks for caring enough read and keep up with the ongoing jig of my life. Thanks for your prayers and your love. Know you have mine, as well. Know I read your comments, both on and off the blog, and I hear your precious messages, and my heart smiles. Goodnight and, in the famous words of Tiny Tim, God bless us, everyone.
(Grin. Why not? I have my Eboneezer scrooge cap on and it's the season!)
