I was diagnosed with breast cancer in April 2003, aged 41; one month after my father died of cancer, and two days after my son's 4th birthday. I had initial surgery in July 2003, when I underwent a lumpectomy and a sentinel node biopsy. I was so relieved to have been selected to take part in the sentinel node biopsy trial as I had heard of lymphoedema and didn't want it to happen to me. Unfortunately, the one node was positive and I had to undergo a full node clearance. As I stated earlier, my son was four and still a 'little' boy. Having gone through so much - he asked me on the day that I went into hospital if he might be too late to see me (he'd been at nursery when my dad died). I was determined to be as normal a mum as possible for him. This included still picking him up if he was hurt - what mum wouldn't. I was still devastated when my arm began to swell, almost a year to the day after my surgery. There was a very long waiting list for the lymphoedema service, so I wasn't seen until October 2004. As my arm was 12% swollen, I had to have a sleeve. The dreadful colour was as depressing as the diagnosis. I spent several months trying to contact various sleeve manufacturers asking them about availability in different colours to match clothes, only to be dismissed with very curt emails. I've now given up for the time being, although do try again every summer, when the sleeve obviously becomes very noticeable and people ask questions like "What have you done to your arm?" The exercises have become a part of my daily life and were so successful at one point that I was told I needn't wear the sleeve unless I was going to be doing some typing etc. Unfortunately, my arm got bigger again and I've now been told this is it for life. If cancer wasn't bad enough, this is a daily reminder. I try to take good care of my arm. When we went on holiday to Majorca, I thought I'd be clever and wear the sleeve at night as a protection against mosquitoes; I didn't know that they can bite through the material, with the result that I had a lovely case of cellulitis! Thankfully, I got a course of antibiotics easily and have a very sympathetic GP at home who is now happy to prescribe a course of 'just in case' antibiotics when we go abroad.

The sleeve and living with lymphoedema have now become a part of me but I would like to think that if there is anything that I can do to support other people living with this condition or to prevent others developing it, I would be happy to do so.

During the first week of January 1985, I underwent a lumpectomy to my left breast. The tumour proved to be malignant.

After a period of three weeks I had radiotherapy for eight weeks. Two treatments a week, alternating with three treatments a week. I had no after effects of the treatment apart from feeling a little nauseous and tired towards the end the course.

Two and a half years ago, some twenty one years after the radiotherapy, I noticed that my hand had become swollen - quite alarmingly.

As it was during the hot weather in June, I assumed I had been bitten by an insect. After two or three days no improvement had been made, I therefore consulted my GP. She thought I had been bitten and prescribed anti-histamines which I was already taking for hay fever.

After a further two weeks, the hand seemed to be worse some days than others. I consulted another GP in the practice who immediately exclaimed "Oh, you've got lymphoedema" and made an appointment for me to attend the lymphoedema clinic at the local hospital.

I was treated very sympathetically at the clinic and given a compression arm sleeve to wear. I attend the clinic every six months and the measurements of my arm still vary quite a lot.

About 18 months ago I had a course of the Bowen technique, which is a form of very gentle massage. Whether it was coincidence or not I don't know, but the arm measurement dropped quite a lot. I would like to have continued with the massage but it is rather expensive at £30 per session and I was recommended to have three. I do massage the neck and chest part of my body as suggested by the lymphoedema nurse at the clinic I attend but cannot be sure that this has been beneficial.

I was first diagnosed with breast cancer in 2000 and had a lumpectomy and lymph nodes removed. After I was discharged, I had a build up of fluid under the arm which was drained off by one of the breast care nurses at the hospital. I underwent 3 weeks of radiotherapy and was then back under the care of the breast care unit. I recovered well with no more problems with my arm at all.

In 2002 I was diagnosed with cancer in my right breast (unfortunately, by this time, I had tested positive with the BRCA 1 gene). I had lost a sister to ovarian cancer and a younger sister had undergone surgery for breast cancer, so the advice of the Consultant, because of the family history, was to reduce my risk as much as possible of a reoccurrence, by having bi-lateral surgery, which after some consideration, I decided was the safest option. I had radiotherapy and 6 months course of chemotherapy. A Hickman Line was fitted into my chest so that the drugs, blood tests etc. could be carried out. The fact that I had lost lymph nodes on both sides was the factor for that decision. I was doing as well as could be expected until about 3 months into my chemo when I was hospitalised due to a very low blood count and infection. No one on the unit I was on seemed to know much about lymphoedema and were unable to take blood pressure samples through the Hickman Line as they were not qualified to do so. I expressed my concerns about this and blood pressure being taken from my left arm but was told it was important that they do this and I was made to feel I was making a fuss.

The left arm was used because I had lymph nodes removed from that side first. By December I was unable to wear my rings and the hand had become swollen. I was referred to the lymphoedema clinic at the local hospice and it was confirmed that I had secondary lymphoedema of the left hand and arm. I was supplied with a compression sleeve and glove and shown simple lymphatic drainage massage.

To say that I was devastated would be an understatement.

Because my arm had remained fairly stable and I was coping with skin care etc. I was discharged in October 2005 and just needed to contact them for replacement sleeves and gloves. No problems again with the right hand until April 2006 when the hand started to show signs of swelling. The only procedure had been a blood pressure reading at my GP surgery, they do not have a cuff long enough to go around the leg and so I really had no choice. Once again, I was back at the lymphoedema clinic and diagnosed with secondary lymphoedema of the right hand and arm, so now I have the matching pair! I attend the clinic every 4 months and they are most supportive and caring.

I feel both upset and frustrated by my experience as I took so much care of myself after all of my surgery and did all of the things I was advised to do. It has been my experience that at most levels there appears to be a complete lack of knowledge about lymphoedema, its causes and implications, the factors and effects of this condition.

Before surgery, I was handed leaflets explaining about the need for care of the skin, exercises and other tips to avoid this occurring. I feel it's the Health Service that needs the information more than the patients.

I hate the summer time when I wear less clothing and I do know how lucky I am to be dealing with secondary and not primary lymphoedema, but after battling cancer twice, it takes some dealing with. I fully support your campaigns to raise awareness of this condition which can be so debilitating. It needs recognising as a very serious condition and bringing into the public eye

After being diagnosed with cervical cancer in April 1988 I underwent a 'Vertheims' hysterectomy in June of that year.

The specialist explained that due to my age (only 34) my ovaries would be left in place if they were found to be clear, but that the major lymph nodes in my pelvis would have to be removed as the cancer could travel through these to other parts of my body.

After the operation and a three week stay in hospital, I was eventually given the all clear and returned home to recover. My treatment whilst in hospital was excellent, but at no time was lymphoedema mentioned or even the possibility of it occurring.

One day, approximately eighteen months later, I began to feel extremely ill with a severe headache and nausea which lasted for a couple of days. I also noticed a burning rash had appeared around my groin which spread down my left leg. I immediately visited my doctor who was completely baffled and sent me to the local hospital where a skin sample was taken to check for cellulitis, by this time my leg had started to swell considerably and I was becoming increasingly worried about what this may be. I later got the results from the skin sample which came back negative.

Over the next 12 years I had regular check-ups at my local hospital and on each occasion I asked the doctors about my leg. No-one seemed to know what was wrong and one doctor actually told me to think myself lucky I was alive, never mind complaining about my leg!

Only one specialist I saw attempted to do anything about it by offering me physiotherapy and suggested I had a few sessions on the exercise bike in the hospital gym.

Throughout all this I continued to work full time and tried to cope with my swollen leg by wearing trousers when I could find a pair that fitted my swollen leg. I also bought the strongest support tights I could find, thinking these would help, which I wore with skirts.

There were some days when my foot was so swollen I could not get shoes on at all.

After searching the internet on my brother's computer I found out a great deal more about the condition and the details for the LSN, which I immediately joined.

After moving home in 2000 I registered with a new GP and mentioned my lymphoedema to her. She immediately referred me to the Macmillan unit at the local hospital where I have been receiving treatment for the past few years. I was given several sessions of MLD [Manual Lymphatic Drainage] and this, together with a compression stocking has made an astonishing difference to my leg.

I know there is no 'cure' for lymphoedema but knowing that there are people out there who understand the condition helps me to cope. I am still working full time, go on long walks whenever I am able and try to keep my weight down

It has taken me around 14 years to get treatment despite me constantly pestering the doctors on the visits to hospital, none of whom seemed to know what it was, let alone how to treat it.

I now know a great deal more about the condition but most of this I have had to find out for myself.

All I can say, is thank goodness for my new GP!

It's hard to believe that only three years ago, lymphoedema was just a medical term, something I needed to be aware of when anything needed lifting, or at hospital appointments when needles loomed, but it played no significant part in my everyday life. I could wear short skirts, high heels and have bare legs in summer. Sadly those days are gone and now exercise, massage and wearing compression tights are part of my daily routine.

When first diagnosed with cancer I felt, like many others, that life couldn't get much worse - but it did! Learning that I had a chronic condition that couldn't be treated by surgery or drugs and the growing realisation that I was on my own in dealing with it, was devastating. The pathos in the slogan "Lymphoedema - because cancer is not enough" neatly summarised my feelings.

In 2001 I had a bi-lateral mastectomy, with the removal of lymph nodes on each side. The breast care nurses went to considerable trouble to warn me of the risks of developing lymphoedema and gave advice about avoiding trauma to the arms. Fortunately, I did not develop any swelling although it was only later that I understood the life-long nature of the risk.

Two years later, I was diagnosed with endometrial cancer of the womb which necessitated a hysterectomy, the removal of lymph nodes from the abdomen and a course of radiotherapy. The support nurse talked me through what I might expect following radiation. We discussed the effect on my bladder, my bowels and my sex life, but no mention was ever made of lymphoedema. The first indication I had that something was wrong was when, part way through the course of radiotherapy, my abdomen and legs swelled alarmingly and I was in considerable pain. I was admitted to the colorectal ward of a local hospital where a CT scan revealed a large lymph cyst in my abdomen which, when drained contained almost two litres of fluid. Again, no one mentioned the possibility of lymphoedema. After ten days the swelling disappeared and I was able to complete the radiotherapy.

I was keen for my life to return to normal after all this, but as soon as I resumed work, my legs and groin began to swell. Each morning everything was fine, but by midday my left leg was so heavy I felt as though I wanted to 'unhinge' it and carry it over my arm. Fortunately, on my last visit to the hospital, where I was being treated for breast reconstruction, I had picked up a booklet about lymphoedema and I began to read more about the condition. Until this point I had associated it solely with the arms and had not heard of it affecting other parts of the body. In view of what I have learned since, that now seems incredibly naïve.

My worst fears were confirmed when I saw the oncologist who said it 'probably' was lymphoedema, but it would 'settle down' in a few weeks. Meanwhile, I should buy Marks & Spencer support tights (which I had already done) and sit with my feet up as much as possible (not very practical for a busy schoolteacher!) I had read about MLD but was told that it was only available privately and because the swelling was in my legs rather than my arms, the NHS could offer me nothing more.

Each day the swelling in my legs and groin worsened and became more painful. I felt depressed and utterly helpless. Having had my breasts, womb and ovaries removed, my legs seemed to be the last vestige of femininity that remained and they were becoming increasingly ugly. Simple things which I had always taken for granted now became an issue. I could no longer wear heels; brisk walking or running were impossible; and sitting for any length of time - at the computer, in the car, at the theatre or in a restaurant - caused increased swelling. Unlike my earlier experiences with cancer, when I had always had support via a telephone line and could discuss my worries with a qualified practitioner, I was now on my own.

In desperation, I rang a local lymphoedema clinic, which offers an excellent range of support treatments to cancer patients, including teaching massage techniques to breast cancer patients, but as the lymphoedema was not in my arms they were not able to see me. My next thought was to contact an MLD therapist. The list I obtained from the Internet showed several in my area and I spoke to some of them by telephone. They were all sympathetic and outlined the different treatments on offer, but I was in a dilemma over which to choose and ended up feeling confused.

Luckily, I found details of the LSN in the back of the handbook published by my hospital and rang the helpline - not very hopeful, I must admit - to see if they could offer any advice. I spoke to a very sympathetic lady, who explained how she managed her own condition and told me of a clinic only 15 miles from my home, which may be able to help. Her re-assurance and positive approach gave me hope that something could be done.

Although the clinic dealt with breast cancer patients, the two wonderful nurses who run it offered to help and were interested in transferring their expertise in treating arms, to other parts of the body. They offered practical advice, explained some simple massage techniques and gave me a contact number to use if I became worried. I felt like hugging them! I went three times to the clinic and their support made such a difference.

Some time later, during a follow up appointment at my hospital, I mentioned my concerns about lymphoedema to my consultant. He told me about the work of Professor Mortimer and referred me to the clinic at the Marsden. Shortly after this, I met two of their lymphoedema specialist practitioners and oh, the relief in talking to people who knew what to do about my swollen legs! They used computer imaging to assess the extent of my lymphoedema; explained the importance of exercise and daily care; supplied me with compression tights; and later offered me a course of MLD. I now attend twice yearly for regular monitoring.

The swelling and pain have reduced considerably and my lymphoedema is now manageable. I've installed a tread mill at home so that I can walk each day whatever the weather, taken up Pilates and even, on a few occasions, I've been able to wear high heels. Although I have had to make adjustments to my life and need to take care with certain activities, lymphoedema has not stopped me doing the things I've wanted to do over the past 2 years - life is good again!

I am fortunate to attend such an excellent clinic and the 80 mile round trip is certainly worthwhile, but it would have saved me a great deal of anguish if information and support had been made available by my local PCT, which serves a population of 360,000. There must be many others in the area needing help with lymphoedema in the legs or abdomen and feeling as desperate and isolated as I did. In all other respects the cancer care I've received over the past five years has been superb. The priority was obviously to treat my two cancers, but it became increasingly clear to me that many doctors and consultants have little or no understanding of lymphoedema and the impact it has on the quality of life. Only when medical training gives lymphoedema the status it deserves can we hope for improved services.

In December 1998 I had to have a full hysterectomy due to advanced cancerous cells of the womb, also some lymph glands were removed.

I was fine until a year and a half later when my feet started to swell up and become misshapen. It was during the summer so we put it down to being warm and standing up in my shop.

I went to see my GP who tested my heart etc. and then gave me a support knee sock which, after maybe two weeks, did no good at all. Plus, now my leg had started to swell and became all lumps and bumps and very achy.

I then went back to see a consultant at the hospital who thought it might be a leg infection so I was given a course of antibiotics. Two weeks later, it was no better but much more painful and swollen. The hospital then sent me for a scan and tests thinking it might be a DVT, but nothing there. Just before Christmas 2000, I was told it was lymphoedema, which I had never heard of. As it happens, a lymphoedema nurse had just been assigned to my hospital, so I was virtually her first patient.

She was marvellous and gave me some hope that eventually somebody could do something for me. She measured my leg and showed me how to massage it and ordered some support stockings.

Slowly but surely my leg started to get some shape back and the swelling went down quite a lot. My leg is massaged every single night with Diprobase cream by my husband and I wear the stockings every day. It still aches but is much more manageable now.

It is a forever job but well worth it and I'm supplied with stockings twice a year, for which I am very grateful. I recently had breast cancer and lymph glands were also removed so I'm now massaging my arm in a preventative measure, hoping no swelling will occur.

There must be many, many people suffering from lymphoedema and no help available for them as yet; it is a very sad situation. I count myself lucky for having my treatment.

When I noticed a mole above my knee on the inside of my leg, as I had private medical insurance, my GP referred me to a skin specialist who has been brilliant all the way through. He subsequently removed the mole at a private outpatient clinic. When I received the results of this surgery, they showed cancer. I was referred to a plastic surgeon and put on the NHS list as he was unable to fit me in on his private list. A wider incision of the mole site was taken and also the lead lymph node in my groin area. The results of this showed traces of cancerous cells. Two weeks later, I had all the lymph nodes removed in my left groin via a groin dissection. On the morning of my surgery to remove all the lymph nodes, I was told by the registrar "you will probably have to wear a support on your leg the rest of your life as a result of swelling".

I went backwards and forwards weekly after surgery to the NHS clinic where they were draining the groin area. I was going on holiday six weeks later and just before my holiday a senior nurse at the plastic surgeon's clinic measured me for a made-to-measure support. I did not receive this for nearly three weeks.

I did not have to have any chemotherapy or radiotherapy and I was not seen by an oncologist. I am now seen every three months by the skin specialist at a private clinic.

I tried to wear the support, but to be honest, it was horrendous. It was uncomfortable, it slipped down when I was walking, went into a crease at the back of my knee and at the ankle, and I was forever pulling at it and tugging at it. I tried to contact the plastic surgeon's senior nurse about my problems but could not contact her and found the clinic totally impersonal and useless. As the weather got hotter and the support became even more unbearable, I got to the stage of stopping wearing it altogether.

I hunted on the internet to try to find a source to buy my own support stocking. I bought a pair of lycra shorts from a website that I found - which were comfortable - cost in excess of £50 - but did not stop the swelling. By this time, I had found information from the LSN website and a contact nearby, who kindly gave me the names of suppliers of support stockings locally and she also enquired if I had been referred to a lymphoedema clinic - I hadn't and didn't know this even existed.

I went back to my GP (whom I had never consulted prior to this) and asked to be referred to a clinic. I was seen by a Physiotherapist at the lymphoedema service and within minutes of meeting her, she was showing me various types of support stockings that she could source and gave me information about the LSN and their fact sheets. She measured me again and within one week I had a new support to wear which is brilliant, I can wear it all day, seven days a week. I was given information about wet shaving my legs, cuts and grazes when gardening, the effects of the sun, care of the skin - all new to me and something I had never considered before. I received two garments on the NHS and I am due to go away on a long holiday next year; when I enquired if I could buy a third garment myself, I was quoted £54 for one stocking! I joined the LSN and purchased the video about self massage techniques, which was much easier to follow than what the Physiotherapist had showed me.

I don't know if the lack of information given to me was due to being under the plastic surgery unit, not having a cancer nurse, or not having to see an oncologist. Nor was I ever referred to a lymphoedema service. Given the increase in Melanomas that is constantly reported in the press, I cannot be alone in receiving no backup - no advice - no literature - and having to source everything for myself.

I feel that the whole attitude was "you are cancer free, get on with life". I am not the sort of person to get depressed and so I never sat and felt sorry for myself and did not give up by thinking "this is it for the rest of my days". I am in my late forties and thank my lucky stars that I have been given the all clear. I am fit and healthy now and I don't let my lymphoedema stop me from what I am doing. But it would have been so easy to give up if I was that way inclined.

I only hope that the LSN can find a way to ensure that all patients receive the valuable information that it can source for them. I cannot see that it would be impossible, surely just for the hospital to give that first form of contact to the LSN to ensure that anyone affected in this way is given support and information. I feel that the lack of information provided was a major oversight at the time of my surgery and immediately after. If I had had more information - or simply a card giving contact details of the LSN - I would not have struggled for so long.