'Doctors Didn't Diagnose My Cancer Then Denied Me Pain Medication'

I told my doctor I was sick for a year and a half before I was diagnosed with breast cancer.

I've always had a good grasp on my emotions, so when I suddenly started to become very erratic in my late thirties, I knew something was wrong. I felt like I was on an emotional roller coaster that I could not get off. My highs were so high and my lows were so low. If I was angry, I was ready to burn something down.

I was spiraling, but my doctor just kept telling me it was stress and anxiety caused by premenstrual dysphoric disorder, which didn't sit well with me. I have been menstruating for my entire life and know my own body.

In March 2016 I asked for a mammogram and hormone level check but was denied both. My doctor told me that because I was not yet 40—my birthday was two months away—I was not eligible for those tests. Four months later I noticed a dent in my breast.

The second I saw it, I knew exactly what it was.

Sure enough, they did a biopsy and by that time I had stage 2B breast cancer, which had been causing a hormonal imbalance. I really felt as though I had been gaslit—my cancer never should have gotten to that stage.

After my diagnosis, I had a double mastectomy followed by a couple of debridement surgeries. I then underwent 16 rounds of chemotherapy which I finished in 2017.

Following my surgeries I pointed out a small area of concern in my chest, but doctors said it was likely fat necrosis. You tend to believe doctors, so I just assumed they knew what they were talking about and progressed with reconstruction.

I ended up losing two sets of implants. When I lost the second set because there was an area that wouldn't heal, I was sent to wound care, where I had a horrible experience.

Shortly after my surgeries, I was treated for various serious infections including cellulitis. I already had arthritis and degenerative disc disease, so the chemotherapy intensified all of my existing problems.

My pain had always been adequately controlled with my fentanyl patch—50 micrograms every 48 hours—and my oral medication, hydrocodone, four to six times a day as needed.

Even with my pain medication, I still have my good days and bad days, and it's not just pain. I would throw up randomly for no reason, and that could happen once, or go all day for no reason. It's not a single-faceted issue.

But following my surgeries, I visited a pain management clinic where I believe they tried to coerce me into having an implantable intrathecal pump to deliver tiny quantities of medications to my spinal fluid, meaning I needed smaller amounts of the drug.

I was reading a copy of my medical records, which stated that if I did not agree to an implanted pain pump they would no longer treat me and start taking away my oral medications. I was in shock.

There was no clinical need for me to go through with another surgery. I was recovering from various procedures and being treated for a number of chronic infections—I didn't believe any surgery, let alone one which involved my spinal column, was best for me.

I have since discovered that pain pumps have their own set of problems, but at the time I wasn't even offered the opportunity to educate myself before they wanted me to agree.

For a long time, I was pressured to undergo this surgery. Fortunately, my infectious disease doctor agreed that I had too many issues for another surgical procedure. After a lot of back and forth, I was assigned a new doctor at my pain management clinic.

I hadn't even met this doctor yet when I received a call from him a few days before my appointment telling me I needed to come in. I couldn't see him, so he told me over the phone he would have to cut my opioids because they were "too high."

Here we go again, I thought.

We had never even discussed my pain before he decided to cut me off my medication. At this point, my cancer was not considered active, which meant I was not a candidate for opioids.

I still had all of the same issues that were causing me constant pain, but this doctor said he would refuse to treat me unless I had the pump. I was so angry, but mainly I felt helpless.

I had been lied to, gaslit, and maimed by doctors. The healthcare system has not been kind to me.

During my last visit with him, I asked: "Does this have anything to do with my diagnosis or my prognosis? Has anything changed that warrants you to reduce my medications?"

He said no. The sole reason was that I didn't have "active cancer" anymore.

Before my pain doctor had the chance to cut me off entirely, I reached out to my oncologist and told her what was going on. She floated my prescriptions and I was lucky enough to find a new pain doctor, who is amazing.

All the while this was happening, I was still raising concerns to my oncologist about what I thought could be further tumors on my chest. At one stage, my regular doctor was on vacation and I saw a male replacement in the interim.

"My white counts are wrong, my red counts are wrong. I'm starting to feel like I felt before my original diagnosis. Some of the physical symptoms are there," I said.

He told me it was probably my period. I was furious. I told my regular oncologist that he was never to set foot near me again.

I was fighting to be listened to once again, telling my doctors that their cookie-cutter approach wasn't working. In my eyes, I was the only reason that I was still alive and wanted more respect.

Less than six months after I was told that my cancer was "non-active," doctors found six cancerous tumors. Now, I'm stage 3D and have found every single one of my tumors myself.

My whole case is just atrocious, but receiving adequate pain medication is still a full-time job for me. Once a month, I have to make four to five phone calls starting ten days before my next prescription is due to make sure my medication will be there. It's toxic for us.

Not knowing whether I'll be able to receive vital medication is horrible. I can't plan vacations or trips out of town.

We're also dealing with pharmacists denying people their medications. So not only is it the fear of my doctor pulling the carpet out from under me, but now it's the pharmacist too.

Cancer grows at such a sporadic rate that there's no way to prove that my treatment options would have been different had they caught it earlier.

I would like to hold doctors accountable for this malpractice, and I have been told by lawyers that I have a case. But the cost of expert witnesses needed to testify and to go over the medical records exceeds $100,000.

At some point, you just quit fighting because all you're doing is wasting your time, it seems like nobody is ever going to help you.

I have developed PTSD as a result of the past eight years—and it's not from my cancer diagnosis. It's the constant gaslighting and being made to feel like I was crazy, like my pain didn't count.

I believe the American healthcare system needs to move away from a for-profit model. Some doctors are given minutes to see every patient and are penalized if they don't see a certain number of people a day.

I believe women particularly are gaslit in the United States; the most hurtful moment for me was the beginning of my journey when I was denied a mammogram and the hormone level check.

Why? It wasn't as though I was asking for opioids at that stage, I was asking for diagnostic imaging. I don't believe there should have even been a second thought.

In my opinion, the healthcare system needs to become more patient-centric and stop chasing profits—because that's what's killing us.

Melissa Novak lives with her family in Chicago, Illinois.

All views expressed in this article are the author's own.

As told to Newsweek's My Turn associate editor, Monica Greep.

With thanks to The Doctor Patient Forum.

Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com.