Weekly Discussion Summary ~ What to Tell a Friend Who Has Been Diagnosed with Breast Cancer

With around 1 in 8 women being diagnosed with breast cancer in their lifetime in the UK, at some point we will find ourselves in a position where we hear about a close friend or acquaintance who has just been diagnosed with breast cancer. But, what should we say? How should we respond?

We instinctively want to reach out and help our friend, we find ourselves thinking back on our own experiences and we wonder what it is that might have helped us, what we might have wanted to know. For instance, would it have helped to know about the effects of surgery and the possible complications? What might have helped us to cope with chemotherapy, or radiotherapy? What would have helped us practically and emotionally so that we might have been better equipped to deal with the challenges that lay ahead?

We all felt that our shared and common experience provided us with a unique perspective from which we could offer generic and helpful advice to bring comfort and support to those affected, like us. Our discussion, which included the experiences of women with primary and secondary breast cancer reflected both the practical and the emotional, beginning with our recognition that our ability to take in advice, support and information changes - in those first days, we just wish for someone who can sit next to us, and give us space talk, to cry, to be scared, horrified and hopeful all at once. Then, once we have a treatment plan, we might find that we begin to galvanize and prepare ourselves for the demands of treatment.

We have found impossible to convey the extraordinary richness and depth of our discussion in a summary. As a result, we plan to try and capture the nuance and detail in the form of a longer blog post which encompasses both the emotional, and the practical, the insights, and our changing needs. Watch this space!

If you have been diagnosed with breast cancer and would like to join our private group please send us a message on our public page: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

#ResilienceDiscussion

Lymphoedema Awareness Week ~ Francoise

Read Francoise's fascinating account of the impact of pioneering super-micro-surgery for lymphoedema in this post which she wrote especially for our #ResilienceinLymphoedema series:

I was diagnosed with breast cancer in September 2013.

I finished treatment (Chemotherapy​, Mastectomy and lymph node clearance, and then 5 ½ weeks of radiotherapy in May 2014).

In February 2016, my arm got painful and I realised it was getting bigger. My doctor referred me straight away to the lymphoedema clinic. However, there was over 3 months to wait before the first available appointment and my arm was very sore so I saw a MLD (manual lymphatic drainage) practitioner who relieved the symptoms. (I had to go once a week and it cost £40.00 so it was not sustainable in the long run.) She gave me a compression sleeve and I could see how I could manage the lymphoedema in the future. It definitely was do-able but I hated the sleeve, not just because it is so ugly or uncomfortable but because it reminded me constantly that I had had cancer and that it might come back. Also I was in constant discomfort – not terrible pains but permanent.

I had heard about a new type of surgery - “super-micro-surgery”. The surgeons describe it thus: “Through tiny incisions, often less than 2cm (1 inch) in length, we find lymphatic channels and small veins just beneath the skin. We then connect the lymphatic channels to the veins, using sutures that are less than a fifth the width of a human hair. This gives the lymphatic fluid an alternative route to escape from the affected area, effectively bypassing the area of damage to the lymphatics.”

The clinic is in Oxford and I live nearby so I thought I should at least consider it. I went to a consultation and found out I would be suitable for surgery. There was the small (not) question of money as this procedure is not available on the NHS in England but my husband and children (they are adults) were very supportive and we decided I should have a go.

We found the money (£15,000) and I had surgery in April 2016, before my first appointment at the lymphoedema clinic.

The surgery took 2 surgeons 5 hours: one hour for mapping my lymph vessels and veins (fluorescent green dye injected in my arm). Very high tech stuff but still they used red markers to know where to cut… I did not know veins and lymph vessels follow slightly different patterns in different people. Then two hours on the inside of my arm, one surgeon on the wrist another one at the elbow and two hours on the outside. I ended up with 4 small incisions with 4 connections in each. I was awake throughout, listening to podcasts on my phone. It was quite interesting. Two weeks off work then back to wearing my sleeve for 6 months. Straight away, the pain in my arm disappeared.

A year on I am still pain free. I only wear my sleeve when I go running or to my Zumba class. Very happy I had surgery. #ResilienceinLymphoedema

Lymphoedema Awareness Week ~ Kathy Bates

Did you know that Kathy Bates has lymphoedema?

The American actress, perhaps most famous for her roles in the films Misery and Fried Green Tomatoes, has worked tirelessly to promote awareness of this little-understood condition which desperately needs more research and better management options.

Do take a minute to read her candid account about her own experience of lymphoedema as a result of having bilateral mastectomies.

Another amazing example of #ResilienceinLymphoedema

http://www.weizmann-usa.org/media/2015/06/24/kathy-bates-my-battle-with-lymphedema

Lymphoedema Awareness Week ~ Karen

#ResilienceinLymphoedema ~ Karen's story:

My name is Karen and I’m a determined, resilient and downright stubborn woman!! I feel it’s appropriate to start this post by stating my position on life, the universe and everything, which is that I won’t be told what I can/can’t/should/shouldn’t do. Sometimes this serves me well and other times not, but I’ve been like it my whole life and I’m not about to change anytime soon. 

I was diagnosed with grade 3 HER2+ invasive ductal carcinoma in May 2015 – I went 6 rounds with the dreaded FEC-T chemo during the summer of that year, had a right mastectomy and axillary node clearance in November, 15 doses of radiotherapy in January 2016 and finished active treatment in August 2016 after 18 doses of Herceptin.

I noticed that my right arm had swelled up pretty much straight away after surgery, however I assumed that this would ease, along with the swelling across my chest, as I started to heal. Although the swelling did reduce, my right arm remained bigger than my left but this didn’t really bother me until my arm started to ache a lot and feel very uncomfortable about a year after surgery.

I was referred to the local Lymphoedema clinic who, so far, have only offered me a compression sleeve - in a very becoming (not!) shade of beige. I’d like to explore other options, like massage, but they’ve asked me not to until I have a review of the success, or not, of the sleeve.

I’ve been told all the things I “should” and “shouldn’t” do and I have made some adjustments – I now have a handbag with a long strap that I can wear across my body, spreading the weight, and I offer my other arm for blood pressure/blood tests. In the main though, I carry on with the same level of activity as I did before – gardening, carrying shopping, etc – because I’m determined that this is not going to stop me being me.

In the same vein, I didn’t let my cancer treatment stop me either. I continued to work all the way through chemo – I only had 3 days off due to a chest infection after dose 5, I returned to work 3 weeks after my mastectomy and I managed to work around my radiotherapy sessions. I’m fortunate to be doing a part-time (24 hours a week) job that I love (most of the time!) and I needed the focus of work to help me to feel ‘normal’.

I also have a 9-year old son, who brings me so much joy, and for whom I feel a need to maintain a high degree of 'normal'. He is another wonderful example of my resilience and determination, bouncing back after repeated miscarriages to eventually carry (almost) full-term and become a mum at the grand old age of 45. 

The sleeve bothers me because it is a ‘badge’ I don’t want to wear. For the same reason, when my hair fell out during chemo I wore a wig rather than a scarf. I don’t want to be defined by this – I don’t want to have to keep explaining to people I meet who ask me what I’ve done to my arm! So far it’s been easy to conceal as it’s been autumn/winter – how will I feel as the weather gets warmer I wonder? How will I cope on my summer holiday this year? I’ve seen some amazing coloured and patterned sleeves on the internet – am I brave enough to wear something like that?

I was bemoaning the whole sleeve business at the school gates recently and one of my friends said maybe we were missing a business opportunity here and that we should look into customising sleeves for lymphoedema ladies – so watch this space… “Pimp My Sleeve” could be coming soon to a high street near you…..!

11/03/2017

Lymphoedema Awareness Week ~ Tamsin

I’m Tamsin and I have lymphoedema in both arms and my right hand.

My lymphoedema story begins with dry hands - I had just finished chemotherapy to treat a recurrence in 2012 when my daughter was admitted to hospital. As I was still vulnerable to infection, I was scrupulously washing my hands on the children's ward. Soon afterwards, my right hand became puffy and by the time I was seen at a Lymphoedema Service, my hand was alarmingly swollen.

With my cancer diagnosis, everything happened very quickly - scan, results, and then a treatment plan. Every new symptom is swiftly investigated. With lymphoedema, everything happened slowly - you wait ages for an appointment, you are given a sleeve or wrap and advised to try it out for a few months.

Initially my swelling got much, much worse - I couldn’t hold a fork or a pen, I couldn’t get my arm into the sleeves of my clothes. Then, fluid started leaking out from cracks in the skin on my fingers.

I had my hand and arm bandaged every day at the hospital for three weeks. I’ll never forget the layers and layers of bandages - I felt like a living mummy! Finding out that I’d only lost 300 mls after all this effort was really disappointing! I was to learn that losing fluid is a bit like losing weight, it’s slow, gradual and there are - frequent - setbacks!

Over around 18 months, I lost nearly a litre of fluid from my arm and I really worked hard to achieve this - religiously wearing my compression garment, wearing a glove at night and doing upper-body exercises twice a day to improve the flow of my lymph fluid. My arm now looks ‘normal’ although I have some fibrosis (hardening of the tissue) in my hand. I still have to wear a custom-made compression garment or the swelling just comes back.

I’m prescribed two garments every 6 month. It takes an hour for the 27 or so individual measurements to be painstakingly taken of the length and width of each of my fingers, my hand and arm. I choose black because it doesn't show the dirt but I think it's shocking that the choice of garments is so limited for people who need made-to-measure garments.

I loathe my compression garment. I hate the daily gymnastics involved in getting my sleeve on (imagine pulling on size 6 spandex pants). I hate the loss of sensation, the painful blisters that develop between my fingers, the stiff, uncomfortable fabric and the colours.

Unlike my breast cancer, I can’t hide my lymphoedema. Well-meant but intrusive questions - ‘Whatever have you done to your hand?’ ‘How long will it take to get better?’ - are difficult to answer.

And then I got lymphoedema in my left arm about a year ago. It felt a bit like a cruel PS, coming four years after my second breast cancer. But in comparison with my right arm it’s easy to manage.

Infection is a worry. The skin on my hand is like tissue paper and needs care and attention. I’ve had cellulitis - a bacterial infection of the skin and tissue - at least twice a year. It caused me a lot of trouble last year when I became very ill after a mosquito bite.

I think that breast cancer charities focus on raising awareness about lymphoedema and preventing the condition. But what about those of us living with lymphoedema? We are the forgotten ones.

My advice to anyone with lymphoedema is to be proactive. I've learned to cope with my lymphoedema by investing in my overall health and fitness and by trying to take control of my condition. Peer support and organisations like LSN and LWO Support have been invaluable, but we desperately need more support to manage our individual needs.
#ResilienceinLymphoedema

Lymphoedema Awareness Week ~ Surgery

Read this interesting article about pioneering surgery suitable for some individuals with lymphoedema as part of our #ResilienceinLymphoedema series:

http://www.lymphedemablog.com/2016/09/30/reconstructive-surgery-for-the-treatment-of-lymphedema/

Lymphoedema Awareness Week ~ Sarah

Read Sarah's story to learn the many ways she manages her lymphoedema in the fourth of our #ResilienceinLymphoedema posts:

I am Sarah. In early 2013 I found a lump in my left breast, and the rest as they say is history. Although it’s not. Then, aged 38 with a 5 year old, husband just started a job working away during the week, cancer was not something that I was expecting to deal with. I didn't have a very good breast care nurse, she retired at some stage of my treatments, I only met her once, the day I was diagnosed. So every step of my journey was a step into the unknown. No one told me about lymphoedema.

Lovely TAC chemo, lumpectomy surgery with full node clearance and 20 rounds of rads. I also have a node with cancer in my collarbone area that couldn't be removed. I was told that Chemo and extra radiotherapy to that area would kill off the cancer and lymph node. The radiotherapy has caused further damage to my lymphatic system around my neck, which does build up too.

During my first week of radiotherapy I noticed pockets of swelling in my inner forearm. My arm started to ache, a lot. So I started to google and learnt about lymphoedema. The nurses in oncology dismissed my worries and requests of a referral, it was side effects of the radiotherapy and it would settle down.

A few months later I saw a new breast care nurse for a routine post treatments follow-up. She agreed to refer me to the local lymphodema service and a few weeks later I became the new owner of one beige and one black sleeve.

I do try to hide my sleeve as I get fed up with people looking and staring and then asking what have I done to myself. It does feel a bit of constant reminder of what has happened to me. I think the sleeves are pretty ugly too!!

So over the past couple of years I have had to make some small adjustments in my day to day life. I've learned not to sleep on my left side if possible or hold my sons hand on my left hand side, it hurts too much to have my arm in that position. I have switched wearing my wedding ring to the right hand. I try not to overdo the shopping so use online for bigger shops, gardening, heavy lifting. I've switched my car to driving an automatic. Putting my jacket on left (lymphie) arm first. 
Swimming is a good exercise for my arm. I do believe use it or lose it. So I do as much as I can to keep my arm in good shape.

All my clothes are non-restrictive around my armpit area. I try to buy cottons and stretchy materials where possible. Most things now have long sleeves and cardigans are now staples in my wardrobe!

I am fortunate to live in an area where we have a fairly well funded lymphoedema service. But budgets and funding is limited and I do feel angry that I had to develop worse lymphoedema before I could have extra treatments which I fully believe would have stopped it developing if they had been available for everyone.

The lymphoedema nurses have referred me to a physiotherapist to ease cording in my arm. It was noticed that I have damaged to nerves from the surgery and radiotherapy. I have various exercises to help ease the stiffness, but it does explain the sharp pains and restriction in movement I have.

This past year it has been confirmed by the breast surgeon that lymphoedema has spread to my chest, breast and back areas. So the tight, firm and lumps I've always had in my breast since surgery is actually lymphoedema swelling, as well as scar tissue, etc. I was quite relieved to learn that one particular painful lump in my breast wasn't anything more sinister!! It’s a constant learning curve. This has opened up a new world of treatments which never existed when lymphoedema was "only" in my arm.

I have just completed a 12 week course of LLLT (low level laser therapy). Its worked well for me and even help ease some of the discomfort from the scar tissue. From the first session I felt a small "pop" in one area of the breast and a strange drawing, trickling feeling as the fluid had finally been released. The nurses have taught me how to self-massage, to use kinesiology tape on my arms and body to assist fluid movements. It’s a two-person job to put the tape on my back and chest - dear hubby came along to learn too. I have also tried the pump sleeve. It didn't work as well for me, but it is very relaxing and did ease some aches.

I've have tried a few different sleeves, some are too short, some are too hot and itchy. However one thing they all have in common is that they are beige!! Although there are a few brands that also do sleeves in black which is better. At the moment I have some cotton ones as I was getting a sweaty rash last summer. They are cooler to wear but they do not like it when they take an accidental trip through the tumble dyer!

My advice is keep talking to the health professionals to get help. Ask questions. Not all the services are joined up so you do need to be your own advocate. There is help out there, just not always easy finding it!