Supporting women whose lives have been touched by breast cancer

Long Term Mastectomy Pain

by j

I am writing this article in the hopes that if anyone is suffering from long term pain after a mastectomy or reconstruction they will be able to access help and support quickly.

I had a mastectomy with LD reconstruction in March 2004. The operation went very well and I had a quick recovery, no problems at all and very little pain relief. I had full use of my arm and it was deemed that I did not need any physiotherapy. The only negative thing I can say about my time in HDU was that I was not fitted with a catheter and needed a wee at least 3 times an hour. In itself this was not a problem but it meant I had to lift myself onto the bed pan putting my full weight on the arm of my mastectomy side. It was excruciating and went on for the first 24 hours! I did not link this experience with my long term pain, until I read about post mastectomy pain syndrome.

I recovered well from the operation and was back doing most activities fairly quickly. After the first year I thought I would mention to the medics that I couldn’t adjust to the reconstruction tightening and jumping around and that it felt uncomfortable, almost like it didn’t fit. The doctor said ‘don’t worry its perfectly normal and it will settle’. They told me it could take up to two years. I felt confident with the advice and just waited. Gradually my chest began to really ache mainly in the evenings. I put it down to getting back to normal and doing more physical activity. As time went on the ache turned to a diffuse severe pain across my chest and under my arm, with an occasional sharp burning sensation. During each check up I explained that the pain was becoming worse and was interfering with work and everyday activities, even carrying a container of milk left me in agony. I felt like cutting my new breast off myself on occasions. Each time I went to clinic I was told that I had a fantastic reconstruction and that I should not worry, it would settle down. I felt I had to be patient as I had not yet reached the two year mark.

During the next few months I returned to the breast clinic three times explaining to each doctor that I could not cope with the pain, only to be told there was nothing wrong. On the fourth visit, two years after my operation I was told that I should be put on anti depressants and the pain was probably psychological. I lost my temper and told the doctor that it was not in my mind, it was real and I was not leaving until someone took me seriously. He referred me to the consultant, who immediately thought he knew what was wrong. He booked me in for the intercostal nerve cutting the following week. I had it cut during a short operation and when I woke up there was a feeling of immediate relief and my breast was settled, no tightening or jumping. I was so pleased and felt like I had my life back.

Time went on, things got back to normal but as they did the pain crept back. It was not quite the same as before and was more diffuse. I mentioned it at every check up and as before, I was told there could not possibly be anything wrong, it was such a good reconstruction. The pain became very severe and was similar to really bad tooth ache. I made an appointment to see my consultant and wrote down my concerns in preparation for when he told me there was nothing wrong. To my surprise he took my pain very seriously and referred me to the pain clinic and to the oncology clinical psychologist. I was a little shocked at this and thought they still think I am imagining it but she was excellent and fully understood my pain was real. She really was a life line.

At the pain clinic I initially had local anaesthetic injections which were wonderful but only lasted hours. It was fantastic to be pain free even though short lived. This did, however, confirm to the medics that the pain was definitely real! The doctor decided to give me radiofrequency treatment but when they got me on the operating table he could not find the trigger point so I was sent home with capsaicin cream which has a numbing effect. The GP put me on a low dose of Amitryptiline and Citalopram anti depressants as I was so low.
At my next breast clinic check up I asked to be referred back to the pain clinic under a different doctor. I saw the registrar who was extremely interested in my case and offered me acupuncture and increased my dose of Amitryptiline. She also asked me if I had heard of a condition called Post Mastectomy Pain Syndrome. She suggested I looked on the internet, which of course I did. It was like a light going on!!!!!!!!! I read the articles and thought that was me, that’s what’s wrong. So many things fitted especially some of the risk factors.

Being pre menopausal
Lack of pain control in first 24 hours after surgery (lifting myself on that bed pan!).
Pre-operative breast pain

I saw so many doctors in the four years I was suffering with this and not one of them had ever mentioned PMPS. I was never warned that chronic pain could occur after a mastectomy either by my breast surgeon or plastic surgeon.

I am now 5 years down the line and my pain is finally controlled to a great degree with Amitryptiline and some psychological support which has helped me cope with the effects of chronic pain (not to tell me it is in my mind)! It was a long journey that threw up all sorts of unnecessary panics about the cancer returning. I recently came off the medication and my pain returned very quickly. It made me realize just how well the medication was working and after being told by my GP that it is a very safe drug I am happy to carry on with it and look forward to a pain free future!!!!!!!!!!!!!

If you think you may be suffering from PMPS there is a lot of information out there. I found the best information was on the Australian sites. Just follow the links or type Post Mastectomy Pain Syndrome into your browser.