Post Mastectomy Pain

Email:- brendasimpson@hotmail.com The following story was written in April 2005 and posted on this site in June 2008, seven years after surgery I have decided to tell my story in the hope that someone somewhere will start to listen and that this criminal and barbaric practice will not continue. There are so many women out there suffering and I am doing this for women everywhere in the hope that it will be stopped and they will not have to suffer this terrible agony. The medical profession have known about this for 30 years and its still being allowed to happen. MY STORY OF CHRONIC PAIN FOLLOWING BREAST CANCER TREATMENT I was 49 years old and diagnosed with breast cancer in January 2001. Because is took 3 months to get that diagnosis the lump was too big to be operated on. I therefore had 6 sessions of chemotherapy taking six months to complete (Adriamycin and Cyclophosphamide). In April I saw the general surgeon who was to carry out the operation, he was pleased that it was shrinking, we discussed the operation and he told me that he would be carrying out the mastectomy and lymph node removal and that I would be left with some numbness down my arm. At no time did he indicate any pain problems. At the beginning of July I had surgery. I was very ill due to weight loss (I went down from eight and a half stone to six and a half stone). I also had to have a blood transfusion. My chest wall felt very heavy and my arm felt as if it was falling off and painful when I got up. I was not aware of how it should feel and no one told me. I was in hospital 8 days and once the drains had been removed I had to return to the hospital on two occasions for needle aspirations. At one of these visits I was seen by a registrar and told I had good results and that my lymph glands had been clear. About six weeks later I had 3 weeks of radiotherapy. I was very burnt and the skin across the chest wall, under arm, shoulder and down my arm felt as if it had been rubbed off with a metal brush. The burning, stabbing, stinging, and pulling was almost unbearable. The chest wall felt as though it was being tightened in a vice. I still thought this was the normal healing process taking place. At an appointment with the oncologist in November when I complained about the pain she told me to take painkillers, that is was the nerves settling down and should improve. Also at that meeting she asked me what my surgeon was doing about another lump under my arm (he had discussed this with me in hospital and I said I had had that there for years. He said I had enough to get over, that it was on a main nerve and not his field). I therefore told her what he had said and she said I needed to have a ultra sound scan. I told her I was going to Australia for a holiday with my sister in a few days time and that it would have to wait until I got home. Whilst I was away the pain was bad but because my sister did everything she could to help us enjoy a holiday I tried not to complain too much. She also got me an appointment with a breast surgeon and he diagnosed my lump as a neuroma and said in view of what I had had it might be better out than in. When I mentioned the pain to him his comment was “I have seen what these cottage hospitals have done before and I would not have cut you like this”. We returned to England in February 2002 and I had an appointment with my surgeon but it was his registrar I saw. I complained about the terrible pain but he just told me to take painkillers and that it would settle down. An appointment was made for me to see a Neurosurgeon in March. I explained to him I had a lot of pain and if removal of this lump was going to make it worse I would rather leave it alone. He arranged an MRI scan in April and a few days later I had a telephone call from his secretary telling me a bed was available for me. I was in hospital for two days, the lump was removed, it was shown to be benign but on returning home the pain became even more exacerbated. I had a follow-up appointment in June with the neurosurgeon and explained about the terrible pain and he said it would improve over time but it just seemed to get worse so later I phoned the breast nurse and explained that the pain was worse and she said she would refer me to a pain specialist. In September 2002 I finally got an appointment with the pain specialist and he explained to me that I had nerve damage and it was more likely to be from the breast surgery. He said he had seen it before following breast surgery and also in car accident victims. It was at this point that I realised how serious this was especially after he offered for me to see a Pain Psychologist and prescribed anti-convulsant drugs – Gabapentin (Neurontin). After this initial appointment I went home and started to research nerve damage and pain on the internet and discovered a site called www.cancerlynx.com/mastectomypain.html. I became astounded by what I read. There are articles written from a surgeons perspective, a patients perspective and the whole syndrome as a whole. The main reasons for the pain seems to be injury to the intercostobrachial nerves, which are often intentionally sacrificed during axillary dissection and together with chemotherapy and radiotherapy all adds to the problem. I could not believe that my surgeon had not told me of the terrible risks. As a family we said we would have made sure we had the best breast surgeon available even if it meant re-mortgaging the house and if this had still happened at least we would have said we had the best, but we were never told of any complications. The Gabapentin helped a little and I had a follow up appointment with the pain specialist in January 2003 and told him of my agony and he arranged for me to have a radio-frequency injection. This was carried out in March 2003. This made the pain even worse. I saw him again in June and he gave me caspacian cream to try which made the burning even worse. He also said the only other route to go down was the possibility of a spinal cord stimulator. Obviously this is more surgery and I was reluctant to go down this road. At the next follow up appointment in September he increased the dose of Gabapentin. By this time I was becoming desperate and with research found myself another pain specialist. My GP wrote a letter with mine explaining what had happened to me. In December 2003 I had my first appointment with her. She prescribed caspacian cream 4 times a day and I explained I had tried it and how dreadful the burning was. She explained that she was also prescribing Emla cream (an anesthetic cream to stop the burning of the caspacian). She also suggested I see a physiotherapist and made arrangements. From February 2004 to June 2004 I attended weekly appointments and in the beginning she told me my arm needed a lot of stretching. Over the weeks it improved and she finally told me there was nothing more she could do that the problem was all neuropathic. I continued with the cream for four months but overall it was ineffective. At the end of June 2004 I had a follow up appointment with the neurosurgeon and he finally listened to my pleas for help and said it had gone on long enough and that he was referring me to Walton Hospital, Liverpool (Neurology and Neurosurgery). He said he would write to my current pain specialist and make sure she was in agreement which she was. I finally received an appointment with a Consultant Pain Physician in September 2004. He told me that he could add another anti-convulsant drug to the one I was already taking and arrange a place on a pain management course. He said he would not contemplate the spinal cord stimulator until I had completed this course but there was a 30 week waiting list at least. I was very distressed and realised more than ever than my problem was chronic and there is “no cure”. During all this time I was in regular contact with my twin sister in Australia and she told me that she had found someone out there who could help me and that she would send me a ticket. The prospect of the journey there again was very daunting but I was so desperate I would have tried anything so in late September I travelled there. The person I saw was a non-conventional doctor, although she had originally trained as a doctor, she called herself a circulation specialist and I had intense massage treatment for 3 days a week for 5 weeks, her idea was to get the blood circulating to repair the damage. The skin on the chest wall started to peel off and new skin formed, I also felt a rush of blood to the area on occasions. I think she helped but overall the nerve problem had become too chronic, the treatment was exhausting, it cost my sister thousands of dollars and I spent a lot of the time there in bed. I returned to England in November. In early December I had my yearly appointment with my general surgeon and I again informed him of my suffering and pain and told him of everything I had gone through that year. He said he was sorry this had happened (three and a half years too late). Later in December I was assessed at Walton for the 4 week pain management programme and told quite bluntly that my problem was chronic and I would have to learn to live with it for the rest of my life. I was later accepted and given a place to commence on the programme on 1st March 2005. The course ran from Tuesday to Friday and because of the distance they offered me a local hotel. I therefore travelled on a Monday night and came home on a Friday afternoon. The whole programme consisted of Physiotherapy, Relaxation, Tai Chi, Swimming, Psychology Group Workshops where we learned about targeting, pacing, managing pain and everything associated with it including depression, anxiety, managing anger, pain and loss, insomnia. During the course I was seen by a psychologist and she said I was also suffering from Post Traumatic Stress Disorder which had never been picked up and that she would be writing to my GP to get me an urgent appointment with a psychologist locally to my home. I also saw the Pain Consultant again and we discussed my medication and he prescribed an anti depressant (Nortriptyline). I told him I had tried it before and it did not work, he said I should have to take it for several months before there is an improvement. They have also informed me that I will not be considered for a spinal cord stimulator until I am psychologically ready. I may have to wait years rather than months because my GP has since informed me that the waiting list for a psychologist could be at least 12 months. Overall the course was exhausting and sometimes depressing, every day there was always someone in tears with their pain (myself included). There were people from all walks of life including medical blunders, accidents at work, car accident victims. It was amazing that on occasions people could have a laugh and a joke. Many people have lost everything including their husbands, wives, partners, families and financially it is crippling because they are unable to work. I too have been unable to return to my job which was full time in administration. Losing a breast is not easy but living with chronic pain is a nightmare. Many people with chronic pain put on a brave face whilst out in public or on rare occasions when they are able to socialise. Many people who don’t understand would turn around and say things like “well they were OK then,” “I saw them out and they seemed alright” Friends and acquaintances assume that because it is three years post treatment you are totally recovered but in reality this is not the case. You have to be mentally and emotionally strong to cope with any social events especially so as not to spoil the day for your family. Our daughters wedding in June 2003 was an example of this. I coped well and looking at photos no one would suspect there was a thing wrong with me but on the inside I was in agony. The shock of being told you have breast cancer means you just want to get rid of it and you don’t stop to think and go along with your medical team. You think they are the experts and know but in my case it all went terribly wrong. The day I was taken to theatre I was first on the list at 8.00am, I arrived to be told to hurry up and put on my gown (that the surgeon was waiting) and get on the trolley, no pre-med, no pain medication or anything, not even a kind word from a sister or nurse. In theatre I was immediately given a general anaesthetic, it was all very frightening and according to the pain consultant at Walton this is totally the wrong approach. They maintain that the brain cannot handle such immediate shock. I was also told by the specialist in Australia that because I had chemotherapy prior to surgery, the blood is so poor which also does not help the healing process. Another article on pain I have obtained reads as follows:- “When pain persists long after its usefulness as an alarm signal has passed – after damaged tissue has healed – then it is no longer merely a symptom. In that case, chronic pain is no longer directly related to evolving injury. Instead it reflects pathophysiological changes within the nociceptive system and psychosocial responses that perpetuate the chronic pain problem.” There are no long term studies with people in chronic pain after breast cancer treatment, information I have read on the internet tells of one lady who is still in chronic pain 9 years after. The medical profession say the problem is rare but this in totally untrue. One only has to read the letters posted on the internet, there are many ladies out there who are suffering. We are in the 21st century and these things should not be happening. Trials are taking place for a treatment that works by focusing on the sentinel node – the lymph node nearest to the tumour which acts as a kind of ‘gateway’ between the cancer and the rest of the body. To find the vital nodes, the doctor injects a blue dye around the tumour and sees which it travels to first. The sentinel node is the most likely lymph node to contain cancer. If it is removed in a small operation and found to be cancer-free the rest of the lymph nodes will also be healthy. It means they can be left alone. Removing all the nearby lymph nodes is unnecessary in three-quarters of cases. It could be years before women are offered this technique. Once pain becomes chronic it is too late. It should be common practice to have a pain specialist available and the problem picked up in the very early stages when it is treatable. In my case it was twelve months too late. I currently take 3200 mg of Gabapentin a day together with 25 mg Nortriptyline and sleeping tablets at night. I walk around in a permanent daze. I am unable to manage many household tasks such as ironing, cooking and gardening all things I loved doing. My husband is now taking responsibility for many of these tasks. The stabbing and stinging have lessened but the pulling, burning, aching and the feeling of being weighted down and your chest in a vice never goes away. Losing a breast did not destroy my life but chronic pain has. Brenda Simpson The area under my arm where the lymph nodes were removed and the drain inserted. The nerves are all trapped, the pulling and tightness and pain are unimaginable.