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September 25, 2000

Mastectomy Pain Advice
Wendy Sheridan

Hello, my name is Wendy and I'm sorry to say that cancer seems to run in my family. My father died in 1964 of lymphoma, he was 38, my sister died of inflammatory breast cancer in '98 at the age of 47, and another sister got a bladder cancer diagnosis at the age of 50 that same year. I was diagnosed with breast cancer in '99 at age 43.

I had a mastectomy on December 28th, and learned a couple of things the hard way. I'd like to share these with you-not to terrify you, but to warn you about what could go wrong and how to possibly avoid it.

A small percentage of surgical patients awaken with pain from nerve damage. If this isn't recognized, taken seriously and treated aggressively right away it can become chronic. This is what happened to me.

It started to go wrong already before the surgery even began. This is because I was inadequately medicated in advance. I had told the anesthetist about my needle phobia which causes me to panic, but the morning of surgery she wasn't there. No one talked me through the IV insertion, I was scared, it hurt and that is how I felt when I got knocked out...scared and in pain. The 20 mgs of codeine I'd received pre op was unsuitable at either relieving post op pain OR helping me relax.

The morphine shot was given to me in recovery. I continued moaning in pain and was given a second morphine shot, which caused me to vomit, my blood pressure dropped very quickly and I passed out. After that, for the rest of my 2 day hospital stay I was only offered paracetamol and 20mgs codeine for the continued pain.

I asked the ward nurse and surgical resident if my upper right arm-the one on the surgery side-was swollen, since it felt like it was twice it's normal size, was extremely sensitive to the touch and felt raw and very strange. I mentioned my armpit because it felt like a porcupine had made a nest there, and I asked what was dripping and crawling around the incision. The responses were something like; "You're gonna be feeling a lot of weird things in the coming time...get used to it,"

I was trying very hard to be brave and co-operative. I was too polite to complain harder. I put my trust in the medical professionals and accepted this pain as part of the 'mastectomy package'. Then I was sent home to celebrate the new millenium with the help of paracetamol and 20mg codeine pills.

For the next 10 days or so I was under the impression that this is what I had to suffer before I could heal, that every breast cancer warrior dealt with these feelings and so must I if I wanted to be a Good Amazon...I kept hoping that the feelings would ease and go away when the surgical drain (a thin tube left in place near the surgical site, which drains fluids into a bottle) was finally removed

When the path reports came back I saw the chief surgeon; the news wasn't good, there was lymph node involvement. Hoping to get some relief, I told the surgeon of my extreme pain and he examined me...I told him not to touch me, maybe I was a little too insistent. I described my symptoms, maybe I was a little too graphic. He made it clear to my husband that he thought I was disturbed, especially when I mentioned the dripping and crawling feelings (even though these awful feelings are not uncommon after mastectomy-I was told this later by the physiotherapist).

Also, by this time the right side of my back was numb except for a center of red hot pain. This is NOT a typical symptom of nerve damage from a mastectomy, my body was creating new side effects! The pain was spreading further afield. The surgical/oncologist expert gave me a prescription for tramadol. It may as well have been sugar pills, it surely gave me no relief. He also advised me to get psychiatric help and this made me feel even worse.

The surgical drain was removed the next day, it was a Friday. By now I was moaning and groaning non-stop, which was driving my husband insane. I was bent over in agony all of the time, just riding in the car was excruciating, as was walking, moving, and laying on my right side.

By Sunday things are even worse. The skin over my incision feels as if it's been rubbed off with a metal brush, I can't bear the touch of clothes or even the sheet. My upper arm feels as if all the skin has been peeled off. I must hold the arm up all the time, if it lays against my side the pressure against the 'porcupine' in my armpit-which has grown in size-causes it's needles to jab harder. It begins to dawn on me that this is not normal.

This isn't normal but I'm not crazy! This is what I feel! I am sane enough to realize I need help.

I remembered that the ward nurse said if I needed anything to come back, so I called the hospital, told them about my problems and asked if I could come. I was told to make an appointment through my GP, who wasn't in on Sunday. I hung up feeling desperate but by now I was determined to be heard, taken seriously and HELPED. I got the number of a doctor who was on call for weekends, a young GP I'd never met before. I limped into his office and described my symptoms. I hadn't even finished when he said, "You have nerve damage!" He realized in 20 seconds what the surgical ward nurses, surgical resident, as well as the head of surgical oncology had missed. Or refused to acknowledge. I'll never understand it.

With this diagnosis I was allowed to make another appointment at the cancer center, and the surgeon saw me the next day. He asked me what I felt and this time his antennae went up when I said my upper arm felt flayed. Maybe I imagined it but I think he looked sheepish as he told me that this was a rare side effect that is almost always temporary. He called in pain management post haste. The pain management doctor-who, in this cancer center, is an anesthetist who specialises-was familiar with my symptoms, having heard similar complaints from other Amazons who'd suffered nerve damage during breast surgery. She prescribed some strange medications for this: anti-arhythmics-heart meds-and a muscle relaxant used by MS sufferers. She explained that opiates wouldn't help my pain anymore. She recommended I use an anti depressant and a tranquilizer for sleeping, which translated into Prozac and Valium.

It took another ten days for the medications to begin to work. The combination of drugs caused confusion, blurred vision, nausea and fatigue. I continued with them because they took the edge off of things, though I never became pain-free. The feeling of having no skin is only just now receding, and we had to add an anti convulsant to the mix before this symptom became bearable. For months I couldn't stand the touch of clothes against the skin on my chest, even the shower hurt. I couldn't leave the house because I couldn't bear to cover the incision with clothes!

Nine months later and I still have constant pain around the incision, it feels as if a vise is tightened around my chest and without the muscle relaxers it's unbearable. My back is still numb, but with underlying pain, I still cannot lay on my right side, which has caused other complications, namely, the dormant osteoarthritis in my hips is flaring up. I have backaches from being tensed up all the time. I'm learning to get used to it. I'm thankful that the porcupine is sleeping and the skin feels as if it's regrown on my chest and upper arm. When I tried to taper the muscle relaxers however, all the symptoms came back with a vengance and I had a setback which caused about a month of pain. I had to increase the dosage and things eventually calmed down again. Except for that tight, crushing feeling. The surgeon and physiotherapist are both very pleased with my mobility and have told me that things appear normal.

If you or somebody you know is scheduled for a surgical procedure, please consider the following:
Studies have shown that getting the morphine shot PRE OP will reduce the pain one feels upon awakening. NOTE: Sometimes a pre-existing condition such as respiratory problems make pre op medication riskier and is not recommended.
Inadequately treated ACUTE pain may possibly become CHRONIC. This is something you'd rather avoid. Any medical professional worth his/her salt should know this.
DON"T SUFFER IN SILENCE, don't be a martyr and the last thing a post-op patient needs to be is stoic! Demand adequate medication, be your own best advocate. Those are good survivor tactics.

Patients in Pain have RIGHTS:
"At a meeting in Illinois, Aug. 3, 1999, the Joint Commission on Accreditation of Healthcare Organizations has developed standards that create new expectations for the assessment and management of pain in accredited hospitals and other health care settings. These standards have been endorsed by the American Pain Society

Health related institutions will be called upon to:
recognize the right of patients to appropriate assessment and management of pain;
assess the existence and, if so, the nature and intensity of pain in all patients;
record the results of the assessment in a way that facilitates regular reassessment and follow-up;
determine and assure staff competency in pain assessment and management, and address pain assessment and management in the orientation of all new staff;
establish policies and procedures which support the appropriate prescription or ordering of effective pain medications;
educate patients and their families about effective pain management;
and address patient needs for symptom management in the discharge planning process.
"Unrelieved pain has enormous physiological and psychological effects on patients. The Joint Commission believes the effective management of pain is a crucial component of good care. Research clearly shows that unrelieved pain can slow recovery, create burdens for patients and their families, and increase costs to the health care system, " said Dennis S. O'Leary, M.D., president, Joint Commission.

I hope that this story helps even just one person avoid the pitfalls I myself fell into. Then I could better understand the need for this to have happened.

Wendy Sheridan
Bladder Cancer WebCafe
Complete resource for bladder cancer with input and information from patients, created by Wendy Sheridan.

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