Chris came to me at the beginning of January, having had a squamous cell carcinoma removed and a total axillary clearance with four weeks of radiation last October.  The swelling in her breast started almost straight away after the surgery and she had been for a number of treatments with a physiotherapist who diagnosed her with lympoedema.  She also has a small amount of cording which doesn’t seem to impact her too much.  At the time of her first visit her L-dex was at 19 (it had got as high as 32, so that was a major improvement).

She is a fit, active 71 year old who delivers pamphlets and who goes to the beach every day.  She has made a lifestyle choice to be a sun-worshipper and doesn’t use sunscreen because she feels it’s filled with chemicals.  Otherwise, she’s really healthy, takes heaps of vitamins and generally lives a very social life.

But the lymphoedema was really bothering her.  After her first treatment I sent her to get a compression sleeve and unfortunately she was given one that was not strong enough.  I also made her a “swell spot” from Mobiderm bandaging to use in her bra to break down some of the fibrosis in her breast.

At the second treatment she said she was really pleased with the “swell spot”, she felt the swelling was down and she was more comfortable.  We added some laser to the treatment and added a homeopathic remedy called Lymphomyosot which she bought from the homeopath next door.

I didn’t see her for about ten days as she was seeing the physiotherapist in that time.  Her elbow had swollen up before she saw the physio, so luckily she was given some bandaging at that visit which helped, but there was still significant swelling.  She came into the treatment with bandaging just around her elbow which she had done herself, having cut the bandages to size.  I explained that bandaging had to start from the fingers and continue all the way up.  We discussed getting her a ready-made Mobiderm sleeve to wear at home at night to see if that helped.  In the meanwhile I cut a small piece of Mobiderm bandaging to place at her elbow until the sleeve arrived.

At the next visit the following week she tried on her new sleeve and loved it so much she decided then and there to wear it all the time. It was much more comfortable than her usual compression.  I suggested she bandage her hand at night just to make sure fluid didn’t make its way down (there had been some the previous week) and gave her a DVD to watch to help her learn how to do it herself.

The following week she had a follow up with her physio who said L-dex had gone down from 22 to 15, great work!

But the best news is, less pain, less swelling and discomfort.  All in one week.  What more could you ask for?

She also had a consultation with Dr Helen Mackie at Mt Wilga who suggested she think about having one week’s intensive bandaging.  She’s seriously considering that when she gets back holiday.

Here she is sporting her Mobiderm garment – out and proud!

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A couple months ago I wrote a post about Mobiderm bandaging and mentioned that I was going to measure my client for a custom made garment with a zip.  The garment arrived a couple weeks ago and last week she came in wearing it so that I could see how it fit.

Her impression so far is that it is easy to get on (though she does have to have a rest half way through putting it on) and comfortable to wear.  It is a bit hot but bearable.  She has never been able to tolerate compression before so hearing that she is willing to be compliant is great news.  She’s not sure how much change she’s seen so far but it has only been a week.

Here are a couple photos …

Do you notice something very exciting?  She can wear her normal shoes over the garment!

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I had a request after my last video for one that dealt with legs post cancer surgery, so here it is. Feel free to ask any questions if you need clarification. And if you would like to see videos on any other topics I’m open to suggestion.

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Some of my clients who have lymphoedema post breast cancer have said they’ve been following my video showing how to do their own clearing and I’ve had to remind them that for those who have had lymph node removal or radiation the process is slightly different.  So I thought it would be best for me to make another video showing how to create pathways and clear the arm properly.

 

 

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A couple weeks ago I had some training on how to use the Mobiderm bandaging system and I ordered a set for me to use in the clinic as well as some stock on consignment.  I don’t do a lot of bandaging but I was so impressed with how much thought had gone into this system that I decided I’d get a set to use on my existing clients to see if it improved the treatment.

One of my clients has been very indulgent of me and allowed me to film her while I applied the bandaging on her arm – watch the video below:

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Another of my regular clients has given me permission to share her experience with the bandaging.  She has lipo/lymphoedema and has areas of fibrosis, particularly on her left leg.  She comes weekly for 1.5 hour treatments but we haven’t been able to get her into compression.  She had tried conventional compression a few years before but found it very difficult to get on because of her size.

I took some measurements as soon as she came in then applied bandages to her left leg.  I then did MLD to her upper body and right leg before removing the bandaging (she probably had the bandages on for about 35-40 minutes)  and clearing her left leg with MLD as normal.  I then remeasured her at the end of the treatment.

I need to point out here that I have used a modified measuring system for this purpose – I took readings at 10 cm intervals above the ankle and 4cm below the ankle.

.                     before    after

70cm              85          83
60cm              75          74
50cm              65.6       65
40cm              53          52.5
30cm              54          54
20cm              43.5       43
10cm              35          33
ankle               37.5      35
-4cm               28         28
-8cm               26         26

As you can see, there was a reduction in most of the measurements (except the feet which stayed exactly the same).

She said at the end of the treatment that her leg felt a little tender and that continued for a couple days but she was impressed enough that we are going to organise a custom made garment for her that has zippers to make it easier for her to put on.

The Mobiderm bandaging is much lighter than conventional bandages and is very easy to apply.  Have a look at the youtube video above to see just how easy it is.  For more information on Mobiderm please click here.

Here’s a photo of what the custom-made zipper garment will look like:

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Those amazing ladies of LASS are at it again.  This time they have managed to get a segment on the TV show “Today Tonight” – watch it here.  As well as a piece in the Bendigo Advertiser – read it here.  And yet another article in “That’s Life” magazine, couldn’t find a link to that one but have a photo grab …

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They are a non-stop rollercoaster working to bring awareness of lipoedema to the general public.  They have had so many new members join, particularly since the Today Tonight segment and they are thrilled to be able to reach so many.

LASS has decided to become a charity so that they can do more to help women with the condition and raise even more awareness.  But as they are not funded in any way, they can’t afford the legal fees to set the charity up.  So they have set up a crowdfunding page on Chuffed.com to try and raise funds to achieve this.  Please, please, if you can donate to this amazing group of women so they can help others.  Click here to be taken to their donation page.

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Last week I spent ages trying to find videos to show some of the self-care routines I was talking about and I couldn’t find any that fully described what I was trying to say.  So I made one myself.l

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The most commonly searched term on my blog is “lipoedema”.  There is little understanding out there of the condition and frustrated ladies take to the internet to see what they can find out for themselves, because there are precious few in the medical arena who have any understanding of the condition.

So I thought I’d write a blog on how you can get help – what I’ve found out over the last couple years as to what works and what doesn’t, keeping in mind of course that while one thing may work for you, it may not for someone else.  I’m not going to go into what lipoedema is today as I’ve written a blog on that before, here‘s a Wikipedia explanation.

The first place I send people is to LASS (Lipoedema Australia Support Society).  This is a group of fiercely strong women who are searching for answers and getting information out there in as many forms as possible.  This year a number of them did the unthinkable – they bared their bodies for photos to make posters to put in doctor’s surgeries (or anywhere else they felt it might raise awareness).  You have to understand that most of these courageous women have covered up for their entire lives.  They have a closed Facebook group that you can join and I’d strongly recommend this.  The group has many files with information on diets, treatments that women have tried, surgeons, therapists, compression, financial support available through the government, and much more. They are organising their second Lipoedema conference for June 2016, to be held in Melbourne.

Lipoedema ladies, photo courtesy LASS

Lipoedema ladies, photo courtesy LASS

I’ve learned (from the LASS FB page) that a Lymphoedema and Lipoedema Community Seminar is being held on the Gold Coast on the 10th September at the Beenleigh Distillery/Tavern, 114 Distillery Road Yatala, late notice I know, but if anyone is in the area you should check it out.

On to concrete things I’ve learnt.  Again and again I hear from various sources (including the patron of LASS and my lecturer, Prof Neil Piller) that water exercise is the BEST thing for lipoedema.  That could be as little as floating around in the water if your knees or hips can’t cope with too much more, walking in the water, swimming or doing water aerobics.

If you can’t get into the water, then walking is always good.  Or rebounding.  Or whatever exercise you are used to doing, the main thing is to keep your body moving and active as much as you are able within the constraints of the condition.

Diet.  Now here’s the thing.  There isn’t any one diet that has been proven to help, but there are many diets that have been tried with some success.  The RAD diet by Dr Karen Herbst seems to be very effective.  Prof Piller recommends an anti-inflammatory diet.  To me, they all seem to agree that eating a diet high in whole, unprocessed foods is going to be beneficial.

Treatment.  The most frustrating thing of all is the lack of treatment (other than of course the lack of diagnosis or belief that the condition exists).  Common sense tells us to keep up the exercise and watch the diet but what else has been proven to work?  Nothing.  But, most women do respond favourably to manual lymphatic drainage and compression (obviously if they can tolerate it).  Dry body brushing also seems to help.  There are  deep breathing exercises that have been proven to stimulate the lymphatic system (thank you Prof Piller for his research).  There has been discussion on vibration plates and Prof Piller has done some research and found that these can be beneficial if used on a very low setting for a short period of time.  Care must be taken with other pathologies such as weak knees or hips.

The Rolls Royce of treatment is WAL (water assisted liposuction).  The link is to a study published on PubMed.  This is a specialised form of liposuction which minimises the damage to the lymphatic system, uses local anaesthetic rather than a putting you completely under and harvests fat rather than general tissue.  There are a number of procedures over a few weeks and compression is worn afterwards to maximise the results.   Post operative recovery is excellent.  This treatment is not available in Australia yet but Germany is advanced and experienced in the procedure and the follow up recovery period.  German clinics and hospitals are at the forefront of lymphatic research and treatment.  The main form of liposuction used for lipoedema in Australia is called Tumescent Liposuction.

Where to from here?  That’s up to you.  If you haven’t been diagnosed yet, but suspect that you have lipoedema then I’d suggest finding a doctor, physiotherapist or massage therapist who can diagnose you.  Easier said than done.  There is a list of therapist and doctors on the LASS FB page that may be of assistance.  In Australia you can get a care plan to see a physiotherapist for five sessions that Medicare will subsidise.  Massage therapists are not covered by Medicare but most will be registered with private health funds which can offer rebates to help offset the costs.

I am more than happy to talk to anyone about options if you’d like to send me a message.  This condition is something I am passionate about and education is vital, there is not enough information available and it can be very confusing and overwhelming trying to sift through what is out there.

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A couple weeks ago I attended my local cancer support group Active Women Touched by Cancer Celebrating Life.  I’ve written about them once before when we had a sexologist at the meeting.

This time we had a physiotherapist who specialises in conditions such as urinary incontinence and poor bladder control and over-active bladder and urge incontinence – Kate Brocklehurst.

This is not a subject women are comfortable talking about but it affects a significant number of us in varying degrees.  Here are some stats Kate gave us:

  • Nearly 4 million Australians are affected by incontinence
  • 1 in every 3 women that have a baby experience incontinence
  • Urinary incontinence affects:

19% of Australian women aged 10-29

40% of Australian women aged 30-44

50% of Australian women aged 60-74

Those are some staggering statistics don’t you agree?  And most of us suffer in silence because we are embarrassed, but in most cases this is a treatable condition.

Kate looks for what type of bladder incontinence is the issue – common ones are things like needing to go to the loo all the time and when you get there you find there’s very little volume; or sneezing or coughing and having a small (or sometimes not so small) leak; having a sudden urge to urinate before losing a large amount of urine; or getting into the habit of “I’d better just go to the loo before I go out in case I can’t find one once I’m there”.  Does that one sound familiar?  In my house we have “one for the road”!

Kate explained that we should be able to comfortably go three hours before needing a bathroom break and that waking once during the night is acceptable.  I found it really useful to have those timelines and I could see lots of the women in the group were interested too.

photo courtesy google images, www.rnspeak.com

photo courtesy google images, http://www.rnspeak.com

We talked about the various exercises we could be doing every day.  We had all heard different things of course so Kate took us through some exercises, seems like we have a lot of work to do!  She recommends clenching the perineum and the anus together (without clenching your bum, so no bobbing up and down on your seat) and holding for a slow ten seconds then releasing, ten times!  But, wait for it.  That’s ten times sitting, ten times lying down and ten times standing!  Because we suffer leakage in all of those positions we need to train the muscles in all of those positions.  Then.  Then, we also need to do “short, sharp clenching” of the same areas, ten times, in each position, for all those “sneeze” moments.  In my head I see that as training the “acute” muscles and the “chronic” muscles, maybe I’m just a bit odd that way.

Some conditions are a bit more tricky and may need medication and others may respond better to surgery.  There were women in our group who had done both and were able to talk about their experiences – all positive.

The moral of the story is, there is help out there for this condition that we suffer in silence.  And we can all do some clenching exercises every day, no-one will know you’re doing them unless you tell them!

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In April I posted on my Facebook page about a study I decided to take part in, run by the Cancer Council of Victoria.  In fact, I’m taking part in two studies, the first called the Australian Breakthrough Cancer Study or ABCstudy and the second is a Melanoma Genetic Risk Study.  Both of the studies had fairly long, online questionnaires covering family history and general health and lifestyle and both sent vials to collect saliva to “extract DNA from the saliva and use it to answer questions about the role that genes play in the development of cancer”, and tape measures to measure my waist and hip size.

My immediate family has a history of basal and squamous cell carcinomas as well as breast and prostate cancer so I feel strongly about finding causes and cures or preventions for these conditions; my obvious reasons for wanting to take part in this research.

My sample for the Melanoma study took a while to get to them, I got an email asking if I’d sent it and of course three days later another one saying it had turned up after all.  Not sure what diversion it had made on the way but it got there.   I haven’t had any more contact from this study so far, but I’m sure they will come back to me with their findings once the study is complete.

A couple weeks ago I got an email back from the ABC Study to say they were interested in taking a blood sample from me for further testing.  The website says “this sample will allow us to examine more than just DNA, such as the circulating hormones and vitamin and mineral levels in the blood”.  So today I went to give my sample and the poor pathologist admitted to being out of her comfort zone, as she had to read the instructions carefully a few times before starting (this was a first for her).  She had a quick think and wasn’t sure she’d want to know her genetic risks for cancer but I’m all for it, if you can see what your risks are then you can make changes to your epigenetics to switch on or off the genes involved.  If you’d like to read a bit more about epigenetics please click here.

Blood taken for ABC Study

Blood taken for ABC Study

Apparently they will only take blood samples from about 10%-20% of participants.  The website also states that “the ABC Study aims to follow the health of participants over many years to see whether genetic makeup, lifestyle and environment affect the development of diseases”.

I think this is an amazing way to participate and help in cancer-related research and the long-term follow up will give great insight into how disease can develop and hopefully help in finding a preventative method of dealing with cancer.  If you’d like to participate, please go to their website and register.

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