It is not uncommon for some women to continue to live with the physical pain of mastectomy long after the surgery has been performed.

Often it involves stiffness in the affected arm from a condition called Lymphedema which can occur in the arm after having lymph nodes removed during the surgery. The stiffness can develop soon after the surgery, weeks or months later...or not at all.

Patients are advised that, if their arm looks swollen or if their clothes or jewellery feel tighter than usual, or that the arm feels heavy, they should contact their doctor immediately.

Debbie (not her real name) was advised by her mother to see physiotherapist Shirlene Dill after she had problems moving her arm which was swollen following her surgery two years ago.

"I could just bend my arm, I couldn't get it over my head," said Debbie, who was in her early 40s when she had the mastectomy.

"When I came to Shirlene it was painful at first but she worked on it."

Woman are not usually sent for physical therapy after having a mastectomy and some will live with the pain and discomfort for many years afterwards.

"I asked a doctor why he doesn't send women for physical therapy and he said he just doesn't think about it," said Debbie.

"He asked me why am I asking him that and I told him because my arm is in bad shape. I couldn't even move the arm above my head, but when I showed him what I can do with my arm now he said `oh, I've got to put that down on record'."

Said the physiotherapist: "When I worked at the hospital the only people they sent after a mastectomy was if their arm was so grossly swollen.

"A lot are much more obvious than her's (Debbie's), and I don't know how much of that has to do with the fact that she had early (physical therapy) treatment.

"It could also have to do with how many lymph nodes they took out. They usually put a drainage tube there right after the surgery to drain the blood."

Debbie goes to Breast Cancer Support Group meetings held the last Wednesday of the month when women with similar health issues share their experiences.

"They pair you up with somebody so that you can talk with somebody who has had the surgery so that you know what to expect," explained Mrs. Dill. "For some people it depends on how much your breast means to you, for some it's very traumatic not having a breast."

From her experiences, Mrs. Dill has found that women suffer with the pain for many years after the surgery, thinking it is common.

"They had a cancer awareness fair up at Bermuda College about three years ago and I was asked to have a table there from a physiotherapist perspective," she recalled.

"I was meeting women that had their surgery years before who were still having problems, nobody had sent them to physio, or even suggested they could have physio or even gave them exercises. I had a handout there and all the women who had the surgery I was giving them my handout so that they were doing exercises on their own, which includes some postural stuff as well as shoulder range and motion exercises.

"The handout teaches you how to straighten up, how to work on the scar and teaches you how to work on shoulder mobility. Surgeons in general don't take the scar into consideration, it's like `I've done my job'. But when the scar gets tight it creates other problems in the body."

Mrs. Dill says just the position of the incision means there could be discomfort in the healing.

"They have to cut through the chest muscle, the pectoral muscle, and that limits you," she explained.

"For people who give in to their pain, they can easily get a frozen shoulder so that they can't ever lift their arm above their head. If you are a person who can work through the pain, eventually you may get movement back."

Lymphedema is a condition that may be treated with physical therapy but there is currently no cure to make the swelling disappear permanently.

"She (Debbie) had shoulder pain just doing nothing," Mrs. Dill revealed.

"She was in a lot of pain, period, right after the surgery. We did pain control stuff like heat and ultrasound, in addition to the hands on stuff to loosen up the scar and get her mobility back.

"We did a lot of mobilisation to the bones of the shoulder because the shoulder is a whole complex of joints, not just one joint. There are nine different articulations in the shoulder and we had to make sure each one of those articulations was moving so that she didn't get a stiff and frozen shoulder.

"In addition we gave her her own home exercise programme to increase her range of motion, exercises when she came in and we tried to loosen up the scar."

Mrs. Dill remembers one woman suffering for almost a decade with pain following a mastectomy.

"She had a lot of back pain and once I loosened up her scar a lot of that pain went, so that scar was creating a lot of tension on her back," she recalled.

"She came to me for her back and then said, `oh, by the way, I had a mastectomy nine years ago'. The pain she had learned to live with was now a lot better because she didn't know that stuff could be done."

The support group has between 25 and 30 women who have either had a mastectomy or are about to have the surgery. Debbie says there are some women there still living with post surgery pain.

"I told them they (doctors) need to recommend they go to physical therapy because everybody needs it," Debbie stated from her own experience.

"One lady said she had a mastectomy 12 years ago and I asked her if she still had pain and she said it was not that much, something she can live with."

Said Mrs. Dill: "The ideal situation would be that right after they have their surgery a physiotherapist went into their room and tested to see how much mobility they had and gave them whatever exercises they needed before they left the hospital.

"And then follow up with physiotherapy as an outpatient, not forever, but at least to get them on the right track. I was talking with a physiotherapist from Canada just this week and she asked me if they got that (physiotherapy) in the hospital and I said no.

"When I worked at the hospital the only person who was referred to me immediately post-op (operation) was a lady who was a 90-year-old. They figured it was because she was older, but she was actually better than most of them."

Mrs Dill added: "The degree of pain you have and the degree of immobility you have depends on your own body, genetics and trauma history. But even if they went (to a physio) to get the exercises and some advice, that would be a good thing to do.

"One lady I encountered in 2000 had her mastectomy in 1981 and was seeing me for something else, her hip...totally unrelated. And she said `by the way I had a mastectomy and I still have tightness in my arm', but it was something she lived with. I worked on her arm and she was a lot better."