Man, I hate bursting people’s bubbles.
“Done with treatment” is nowhere near where I’m at, mah babies, but I’m glad some think I’m so amazingly healthy-lookin’/actin’/feelin’/trash-talkin’ that they would assume the best!
Here’s the lowdown on breast cancer treatment: It usually ain’t as easy as (in no particular order) surgery, chemo and radiation. Easy. ~snort~ I actually laughed to an empty room as I wrote that sentence. Easy as a descriptive in reference to breast cancer = laughable.
As we have covered before, breast cancer is a complicated disease and managing your diagnosis can be confusing and complicated.
Let me walk you through my diagnosis and treatment and you’ll gain insight into what many women (and men) deal with in terms of the daunting task they face.
1: Pre-diagnosis: this refers to the time frame when either your mammogram is in question or when you (not your doc) found a concerning lump; the latter was my case.
2: Pre-diagnosis testing: The doc or radiologist or both (as it was in my case) will make a decision based upon what they see on your follow-up mammogram. You’ll either be advised to wait and watch (my case) or you’ll be advised to proceed with a fine-needle biopsy or a core biopsy, which will be ordered to grab some cells from the suspicious area.
I was advised it would be safe to wait because of previously known calcium deposits in the same area as the cancer. I spoke to my doc several times after she had conferred several times with the radiologist. Their combined advice: I was safe to wait six months and then follow-up, which I did.
3: Biopsy: A fine needle biopsy is simple. A thin needle is inserted and cells are captured. A core biopsy uses a larger needle to extract more of the suspicious mass. Which ever method is used, the sample is then sent to a pathology lab to be evaluated.
I had a core biopsy. And then a very unusual thing happened. Then doc who was doing the biopsy, told me upon extraction of the cells that I DID NOT have breast cancer. She advised she had done thousands of these biopsies and what she pulled out was calcium deposits (and something else which I can’t recall). There were happy YAYS! all around and I went home and didn’t think about it again until I was called the next morning, while making an early morning Target run, by the same doc that said that I should expect a call from my gynecologist (she was the one who had ordered the biopsy) because something unexpected showed up on my biopsy. I asked her straight out if I had cancer…she hedged and we hung up. As I walked to my vehicle, my gyno called and blurted out: You have breast cancer and you’ll need surgery and probably radiation.
As the whole work tilted, my journey began in earnest.
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4: Find specialists who will (hopefully) save your life. I needed a surgeon and an oncologist. I made some calls. I cried with friends and family. The heavens parted and the perfect-for-me surgeon and oncologist came into my (our) lives.
5: Meet with specialists for the rough draft of your cancer treatment road-map. Holy shit those first appointments were fraught with tears, confusion and terror.
6: After you have met with your team and gathered information and done some of research, it’s time for YOU to make the decisions about YOUR treatment. Another holy shit moment. How does one make a decision with that kinda weight behind it in a moment of crisis? We did a lot of praying and trusting. My advice: picking a stellar team (research the docs as best you can and ask around) allows you to trust and let them lead in areas you’re unclear about (for me that meant I needed research docs, as I require ALL THE INFORMATION at appointments).
7: Nail down your treatment plan, then proceed in faith, allowing for change. My treatment plan changed after our first appointment because the pathology of my tumor was revealed to be a more aggressive cancer the next day, as more test results were completed. The original plan was an MRI, to let the surgeon see what he was up against, surgery for a full mastectomy (I am a small-breasted gal and a lumpectomy would take more than half of my breast tissue, effectively creating a mastectomy, so it seemed as if there was no choice in the matter.) within two weeks of our initial meeting, then chemo.
When my hormone markers for my tumor came in from pathology the next day, it changed everything. My team believed (rightly, it turned out) if I did chemo first, my body would have a chance to respond positively and shrink the hell out of the tumor, possibly allowing for a lumpectomy. Not only was my team right, but I hit the jackpot of achieving Pcr as confirmed in surgery (Pcr = there was no evidence of any tumor cells at all). My lumpectomy turned out to be more of a glorified biopsy, completely saving the breast.
My initial appointment called for a complete mastectomy, yet today I have a small scar. Modern science is astounding.
8: Port placement for chemo. This is a simple day surgery that places, under your skin, a port that is accessed for administering chemo drugs. That way there are no IVS and no danger of the caustic chemo leaking outside your veins and causing secondary issues.
9: Chemo. Lawsy. The toughest challenge in my playbook was chemo. It was straight up 15 weeks of hell. I had a treatment every three weeks, which at first seemed like a breeze. Six treatments! How hard can this be? Flash freezing things with liquid nitrogen hard, y’all.
Each treatment down was a celebration, followed by another harrowing three weeks of the unknown. We wrapped our threadbare coats against us as the cold winds blew. We trudged through the hard winter of our life and after each round declared victory, only to face a more bitter misery the closer we got to the end. Yet, we prevailed, by the grace of God, to VICTORY!
10: Precautionary Echo. My tumor was Her2 positive, which meant one of the drugs I was/am given (still) can cause serious heart issues. YAY me! Every three months I need an echo so the docs can determine if I can continue on the life-saving miracle drug, Herceptin. So far, so good.
11: Pre-surgery MRI. In the early days, post-diagnosis, I had an initial MRI because my surgeon needed it prior to surgery. That MRI served to be my baseline MRI. My new pre-surgery MRI, would show the extend of my tumor post-chemo. Because the docs could no longer feel the mass, they wanted a pic of my insides to see what was what. Turns out there was nothing to see, as in NO TUMOR! That whole Pcr thang that we thank God for every day.
12: Guide wire placement, pre-surgery. On the morning of surgery, I had to get an ultrasound-guided guide wire placed in my breast to lead my surgeon to the tumor bed, because, um, he didn’t know where to go precisely because of the Pcr. The doc who placed the wire knew where to go because when I had my initial biopsy, the doc placed a titanium marker in the spot of the tumor. Find the marker by ultrasound and you find the tumor bed! They placed the wire, taped it down and we went across the street to the hospital for surgery.
13: Surgery: Since my MRI was filled with nothing but what actually belonged in the pic, IE no tumor to be seen, my surgeon advised I was a prime candidate for a lumpectomy and a sentinel node dissection (he took only two nodes). He advised if the initial sample, a clean margin, he took during surgery showed no cancer cells (it didn’t), my surgery would resemble a biopsy with two small scars. One scar to get a clean margin of tissue from the tumor bed and another to grab my sentinel node plus one. Well, three scars if you count the port extraction, which I had done on the same day to avoid one more surgery. It took a good 2 weeks to recover from surgery, but my pain was minimal and the port was out!
14: Having a lumpectomy instead of a mastectomy meant I would need radiation. This was the one treatment plan I tried like hell to research my way out of. Yet, the research is sound: radiation cuts down on recurrence by almost 50%. It’s a mixed bag of good and bad. When folks asked if I was opting for radiation, most had no idea it meant (for me) 20 treatments total. I would go every day, five days a week, for four weeks. Even I was surprised. I figure it would be like an x-ray: go get zapped and done. Not hardly.
The good is that it cuts recurrence. The bad is there can be many side-effects like fatigue, permanent skin changes or nausea. More serious side-effects can be lung or heart issues.
Opting for radiation meant I had to first be mapped by CT scan for the areas to be radiated. During this session, they ask to tattoo you with small freckle-sized dots in order to line you up on the table in the subsequent treatments. I refused the marks. I opted for semi-permanent ink instead. My doc approved, yet the techs weren’t thrilled. I was assured I was getting radiated properly, albeit making the tech’s job a bit more focus-intensive. I just couldn’t abide by one more permanent mark/scar on me if it was unnecessary. I know it sounds unreasonable, but it turns out it was my line in the sand. #breastcancerpatientstand
15: Continued drug infusions. With chemo, and surgery (and most of radiation) behind me, most assumed I was done with treatment. Nope. My tumor had Her2 markers which means I receive an infusion of the drug Herceptin, by IV, once every three weeks for 18 treatments. That means many more weeks of active treatment, but I ain’t complainin’. Herceptin will drastically cut my chances for recurrence.
Used to be, before Herceptin, that those of us who drew the Her2 card (which made our tumors uber aggressive and fast growing to distant places, meaning metastasis…the worst word to hear when you have cancer) were much more likely to die from breast cancer. Today, with the drug, our odds are dramatically improved. Each time I’m poked to start my Herceptin IV, I thank the women who participated in clinical trials so that I (and others) might have a fighting chance with this disease.
16: Continued monitoring of my heart through an echo every three months, as long as I’m on Herceptin. I’m down with that.
17: The final course of my treatment is a hormone blocker, taken by pill, for 5-years. 5 YEARS! E will be eight when I’m done! The women who take these drugs are typically the women whose tumors were estrogen-fueled (or “driven” as the docs say). Mine was. That means any estrogen in my body is go-juice for any lingering cancer cells. Gotta eliminate as much as we can and that’s where the pill comes in.
For a gal who has eschewed pills of any kind her entire life, taking something every day for 5-years seems impossible. Yet, when I look at the stats of how much it can help in preventing recurrence (that’s what they are used for), I think: time to get a pill box thingy, granny!
As of this writing, I have finished chemo and radiation, had my last surgery, have started the hormone blocking pill and have completed 8 out of 18 infusions of Herceptin by IV (10 more to go!).
I understand why folks think I’m done since the big stuff is behind me. The reality for me, and thousands of women fighting this disease, is that we’re still in it, trying to win it.
Am I done? Negatory, Ghost Rider. But, you better believe when I am, you’ll be reading about it!