I want to begin by expressing my gratitude for many amazing medical professionals who have helped me immensely through my two-time battle with breast cancer. My goal in writing about some of my unfortunate and unnecessarily painful experiences is to save you from going through something similar. With a little knowledge and the advocacy of someone who knows about cancer and it’s treatment I feel your experience, although not pleasant because of what cancer is, can be less intimidating and painful.
This was my experience. I don’t share it to badmouth anyone or to elicit sympathy, but to illustrate the importance of being informed and therefore well-equipped to face cancer head-on.
Biopsy experience #1:
In September 1999 I found a lump in my left breast. I was freaking out inside because the thought of cancer terrified me. My grandmother died of breast cancer and my mother of ovarian cancer. Rather than panic, I decided to wait until my regular ob/gyn appointment which was already scheduled for October. I didn’t tell my doctor, figuring she’d find the lump during the exam. She didn’t notice it, so I pointed it out. She said it probably was no big deal and to take Vitamin E pills daily for a month and to come back.
I dutifully followed her advice and returned a month later, with the lump. She then referred me to a surgeon for a needle biopsy. He wasn’t able to draw any fluid out, so he scheduled me for a surgical biopsy. I asked about doing the surgery in such a way that there wouldn’t be an unsightly scar, and he said he couldn’t. (I should have gotten a second opinion before scheduling the biopsy.) After the results came back I learned I had ductal carcinoma in situ (cancer), as well as a significant scar.
I selected an oncologist and at my first appointment she recommended I switch to the surgeon with whom she worked. When I met with him, he was upset that Surgeon #1 left a scar and an indentation in my breast. He said he could have done the surgery where no scar would have shown and I would have been pleased with the results. As you might have guessed I felt out of control at this point and disappointed. Surgeon #2, also scheduled me for a sentinel node biopsy, a procedure where they inject dye into the area of the cancer and follow it to the lymph nodes. (This was one of the tests I had asked Surgeon #1 about and he said no one in town was doing them and it was “still experimental,” validating the importance of getting a second opinion.) Surgeon #2 performed the SNB on me, a procedure he told me he’d been doing for years. (This was my introduction to the varied opinions of medical professionals.) Once injected, the first node the dye enters is the sentinel node, and the ones that it feeds are secondary. The dye helps the doctor locate the nodes. He then removes the sentinel node and just a few of the others to be tested. If they are cancer-free, then the patient is spared the discomfort and troublesome issues that come with having all their lymph nodes removed. Thankfully, my sentinel node was ‘clean,’ so I was able to keep my remaining lymph nodes.
Biopsy experience #2:
Five years later, I found a large lump in my right breast. I’d been having mammograms every six months since my first battle with breast cancer. It appeared quickly and was aggressive. I made an appointment with Surgeon #2, since my oncologist was out-of-town.
By now I’d learned that doctors weren’t in fact infallible, a disappointment for sure, but I was still a very loyal and trusting person.
In my first appointment (of the second cancer) with Surgeon #2, he brought up ‘Mary’ (name changed to protect her identity), a woman I had referred to him several months earlier. He asked about her and I said I hadn’t heard anything. He informed me that she had decided to ‘go to Tulsa’ and had chosen a different course of treatment. I got the impression that ‘Mary’ choosing a different doctor really bothered him. Then he did a needle biopsy on me, without any anesthesia. (FYI, It’s never a good idea to have an angry doctor do any procedure on you.)
A week or so later at my second appointment with Surgeon #2, I walked in the room and the nurse said to undress from the waist up. I said there must be a mistake, that I’d already had the biopsy and the doctor examined me at that time. She basically said, do it anyway, and left. I was really irritated and my husband tried to calm my nerves. I looked over to the counter and noticed some scary-looking medical implements laying there. I proceeded to undress and put on the gown which was tiny. What is up with one-size-fits-all hospital gowns? Isn’t it humiliating enough that you have to undress and have your breast probed and poked, but you can’t even keep yourself covered?! I rummaged through the drawers under the examination table to find something bigger. No luck. (FYI, when you’re facing cancer and numerous office/hospital visits, even minor things can become enormous irritants. Emotions become strained and fragile.)
I sat on the cold, exam table clutching my too-small gown and Nurse Nancy (not her real name) and Surgeon #2 walked in. He sat down and told us the pathologists tested the tissue from the needle biopsy but hadn’t labeled it cancer. They said only that the cells ‘looked suspicious.’ He said, “They won’t say it’s cancer, but I’ll tell you right now, I’ve seen this hundreds of times and it’s cancer.” We talked and I asked if there was any possible way to avoid chemotherapy. He got pretty intense and said loudly, something like, “You are still a young woman! What is your deal with not wanting to go through chemo again?” (Um, probably because I’d gone through it already!) Then he got angry and said, “You’ve got a look in your eye! If you think you’re going to run down to Tulsa and have some doctor tell you what you want to hear, give you a pill or some herbs . . . if a pill could help, I’d have given it to you.” Then, shockingly, he said something like this: “You know, I don’t need your business. I have more than enough, but if you think you’re gonna run down there. . . .” I couldn’t believe what I was hearing! It was like he was taking his frustration over ‘Mary’ and his bruised ego out on me! (That should have been my exit cue, but foolishly I stayed.) Incidentally, that was the first time it ever occurred to me that a doctor saw me as income. Duh, was I ever naïve! I thought the reason he became a doctor was to help people! Sadly, I believe I was mistaken. Thankfully, not all doctors behave so badly.
Then Surgeon #2 stood up and told me he needed to do a core biopsy so the pathologists could have more information to work with. I’d never heard of a core biopsy, and he didn’t explain it.
Les asked if he would numb me first. He said he would, but that it couldn’t numb all the way into the lump. I don’t think he gave me enough local anesthesia because I felt everything. (Again, if I had to do it over again, even at the risk of him blowing up in a rage, I’d ask him to numb me more.)
What happened next was sheer torture. I look back in disbelief that this happened to me. Watching Will Tippin on Alias be tortured the night before was eerily premonitory of this moment.
He cut me with a scalpel and inserted a long metal tube into my right breast. Then he slid some kind of long needle down inside the tube and pulled a trigger which grabbed and pulled my flesh. It hurt like hell. I was shocked to feel such incredible, searing, burning pain, but I focused on the relief that it was over. It wasn’t. Surgeon #2 went on to do that three more times! Each time it hurt worse – like yanking all the way down to my abdomen. I had tears streaming out the corners of my eyes, running down my neck, the back of my neck and hair wet in a pool of tears. I gripped Nurse Nancy’s hand with my left hand and the table with my right. My husband was standing at my feet, looking on in horror, unable to help me. I had to shake my left leg vigorously in an attempt to distract myself from the excruciating pain.
Surgeon #2 dropped the bloodied metal implements into the sink and quickly exited the room without saying anything. Nurse Nancy followed. Les and I were left in the room, blood dripping down my breast, onto the table. My teeth began to chatter, my body shook uncontrollably, as I slipped into shock. I was so cold. No blanket. No ‘sorry I had to hurt you like that.’ No ‘good-bye’ or ‘I’ll be right back.’ Only a little band-aid that didn’t stop the bleeding.
If I’d known what they would be doing, I could have taken something in advance to help offset the pain. They knew and should have told me.
After waiting for a long time, Les went out in the hall to ask for some assistance. A pain pill perhaps? He washed the blood from me with a few paper towels he found near the sink holding the bloody instruments. My dear husband helped me dress and Nurse Nancy came back with a pain pill and a prescription. She seemed surprised that I was shaking uncontrollably, but showed no compassion, only icy indifference.
The next day I called my oncologist to tell her about this experience and she didn’t “understand what the problem was.” I finally realized it was time to look for a new team.
(I had nightmares about this for over a year afterward. It felt brutal and violating; indeed, it was the most barbaric experience I’ve ever endured. There is no excuse for medical treatment like this anywhere. Ever.)
We put the word out that we were looking for a new surgeon and oncologist. Dr. Silva came highly recommended and agreeably fit me right in to see him. His nurse, Sue, was kind and friendly. (Ever since, I’ve referred to her as, “Sue, the nurse that I love,” because of her ready smile and good-natured approach.)
Examining me, Dr. Silva was shocked at what he saw. I had such terrible bruising and swelling after the core biopsies that there was no way to distinguish the tumor from the knotty contusion. He was swift in ordering other tests to learn as much as possible and determine a course of action.
When I went in for an ultrasound, the doctor performing the ultrasound asked me several questions, one of which was, “Did [Surgeon #2] use an ultrasound to locate the tumor before doing the core biopsy? I said no. “An x-ray?” No. She was appalled! (Maybe he was punishing me for ‘Mary’s’ resolve to go elsewhere? All I can say is, ‘Mary’ definitely made the right decision!)
I hope that my horrific experience was one in ten million. I would never wish it on anyone! Please, allow my misfortune to motivate you to find a doctor, as I finally did, who shows genuine concern, is patient with your questions and is open to you seeking a second or even a third opinion.
I’ll end this post with a few suggestions, lessons I learned in my process:
~ A second opinion is always wise. Sometimes a third opinion is necessary.
~ Never go through with any procedure if you are uncomfortable or unsure about it, or
if you are not fully satisfied that all of your questions have been answered. It’s vital
that you understand what the doctor is going to do and why.
~ If your doctor doesn’t want to explain himself/herself, or doesn’t encourage you when
you mention getting a second opinion, then I believe you you need to find another
~ There is a tendency in many of us to attribute almost God-like characteristics to our
doctors, especially if they have helped us through past illnesses. It’s important to be
courageous, (after all this is your body,) and realize you have a role to play in your
own process. Even the best doctors can’t know absolutely everything.