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One of my clients, Chris, has very kindly given permission for me to share her photos and reports to write this blog.

Chris is what I’d call a very “motivated” client.  She is determined that she will kick lymphoedema’s butt, no matter how many times I tell her that she can control it with good maintenance but it will always be a part of her life.  She believes in positive thought and who am I to knock that?

Chris first came to see me in January 2016 at the age of 72, complaining of swelling and discomfort mainly in the left lateral chest wall and through to her back as well as her upper arm.  She had had a squamous cell carcinoma removed in the area (as well as many others in different parts of her body), along with a total axillary clearance and radiation to the area.  The swelling became noticeable almost as soon as the radiation finished in October 2015.

She had a number of physiotherapy sessions prior to coming to see me but hadn’t found these beneficial. I checked her self-clearing technique (she was directing fluid to the armpit so we adjusted that and I showed her how to do deep breathing as well).

Over the last year we have used a number of techniques.  Manual Lymphatic Drainage is the main therapy used but I have also added Low Level Laser and deep fibrosis techniques.

Chris uses a Mobiderm arm sleeve day and night (she finds this more comfortable than elastic compression sleeves).  There are days that she does use her normal compression sleeve as well, but she finds the Mobiderm more effective.

I have fitted her for a compression vest which she also wears daily, with Mobiderm swell spots inserted in the areas of greatest fibrosis. Photo below

Chris uses her own low level laser daily at home – she has a Pulse Laser.

Once a week she applies kinesiotape down her arm and across her back – she takes this off just before coming to her MLD sessions and reapplies once she gets home.

She swims daily in the ocean when it is warm enough and does a lot of walking (she delivers pamphlets every day) and running.  She is incredibly fit, active and full of energy (she credits the energy to taking lots of spirulina, but I can’t vouch for that – she’s just full of life!).

After a few months of treatment Chris went to Mt Wilga Hospital for a three week intensive course of treatment. She now has a very personal relationship with Dr Helen Mackie!

Even though visually you cannot tell Chris has lymphoedema, she is aware of it constantly and it affects her daily life.  So she went to see Dr Mackie and the surgical team at Macquarie Hospital in October 2016, to see if perhaps there was a surgical solution to her issue.

She spent about four hours with the team, being measured with different diagnostic tools and when using Indocyanine Green (ICG) Fluorescence Lymphography, they found she had some issues in the dorsum of her hand but that her arm was ok. There was also an issue in her lateral chest (where she had the most discomfort) and no evidence of functional lymphatic vessels, with no lymph movement down to the lower abdomen. She did however have a strong pathway across her chest to the opposite side, as well as one on her back going in the same direction. And the scans showed up lots of fibrosis in the chest wall which needed to be broken up with deep friction massage.

Armed with that information, we were able to tailor her treatment with a real focus on breaking up the fibrosis using laser and deep work, as well as stretching of the arm/shoulder area.

Chris had follow up scans on 23rd March 2017 and the difference was quite astonishing! She had a new pathway going from her armpit down into the abdomen and the fibrosis had reduced significantly. So much so that they felt she wasn’t a surgical candidate and she should continue the conservative treatment in the pathways that are now available!

If only more people had access to scanning using ICG – it has been a very useful tool for customising Chris’ treatment and has been beneficial in her progress which in turn has made her much more comfortable with her lymphoedema.  There have even been times when she’s chosen not to wear all her compression for a few hours and she’s enjoyed the freedom that’s given her.

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This was one of the many powerful presentations at the Conference, presented by Louise Koelmeyer of Macquarie University. What made it so powerful was that it was a case study of a patient who had undergone surgery and she and her husband were both there to discuss it with us first hand.  So many of the talks at the Conference are reports and statistics, so to be able to interact with an actual “case study” was invaluable.

The patient was 48, had six children and was then diagnosed with a gynaecological cancer, requiring surgery/chemo/radiation.  After her treatment she developed lymphoedema in her left leg.  She lived “out bush” so getting treatment was difficult but she did manage it fairly regularly but couldn’t attend often enough to control the swelling. She had to give up her work as a teacher as she couldn’t move easily but more importantly her leg was so large she couldn’t find clothes or shoes to fit so getting out was becoming increasingly difficult on numerous levels.

Her team of therapists spoke to her about surgical options being offered at Macquarie University and encouraged her to get in touch to see whether she was a good candidate for liposuction.  She went to the first assessment and struggled to get up the eight steps to the building, using her upper body strength to haul herself up.

She was found to be a suitable candidate for liposuction and from memory they removed 10 litres of fluid from her leg.  Directly after the surgery she was put in very heavy compression and she was sent for her recovery therapy to Mt Wilga Hospital in Hornsby.  The communication between her and Louise Koelmeyer was free flowing, they used Skype, texting and of course phone calls and when she developed an infection and communicated that to Louise she was quickly hauled back into hospital for treatment and monitoring.

Three months after her surgery, at a scheduled checkup, she was sitting with her good friend at the Opera Bar, looking up at the Harbour Bridge – she wondered what it would be like to climb it.  So, having had a glass of wine or two, she got on her phone and booked two tickets for the next day!  And three months after her surgery she climbed the 1332 steps on the bridge! Unbelievable!  At the six month mark she was running 10km.

Now I have to point out that one of the non-negotiables of this surgery is the wearing of compression 24/7.  If you cannot agree to this condition you will not be considered a suitable candidate.  This patient is 100% compliant with her compression.  She has two garments, the first is 30 mmHg and the second is 60 mmHg.  That’s some serious compression and getting it on requires her husband’s help.  Initially she was putting the 60 mmHg stocking on first but through trial and error has found it works better for her to put the 30 mmHg on first then the heavier compression glides on more easily.  It takes her about ten minutes daily to don her stockings.  She has on occasion fallen asleep after her shower at night, waiting for creams to dry (very important to look after the integrity of the skin) and woken up in the middle of the night and put her compression on straight away because it felt wrong to be without it.

Now here’s the result – so far (she is still being followed up and measured regularly and each time has a continued loss of fluid/circumference) – she and her husband have been on a round-the-world trip because … she can fit into normal clothes and shoes so can go to different climates with ease.  She is back working three days a week.  Energy levels are back.  She looks absolutely normal.  She’s costing her husband and absolute fortune in shoes!

There is hope with liposuction, but it takes work and commitment – daily.  If you feel you can commit to this, then please, talk to your therapist about your options.

Thursday 23rd June 2016 – a follow up … here’s a link to an article in the Sydney Morning Herald about the same patient, with photos of before and after.

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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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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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I often ask my clients to write guest posts for the blog and most of the time they say, “you do it”.  This week however, I’m posting for one of my clients, Cathy.  Cathy has a real “can do” attitude, she does all she can to help keep her lymphoedema under control and she’s on a mission to spread awareness wherever she goes.  Here’s a short recount of her story …

 

The lump is early Breast Cancer!

On the table are all the cards – fright, fear (and some anger – why me!), surgery, with removal of 23 lymph nodes, chemotherapy drugs, radiation treatment and more importantly, expected cure.

Good news – I’ll be better next year!

That was the plan and yes I did it all.  Lymphoedema from the surgery was the most unpleasant surprise and it was there by the time my drain came out.  All my care givers were most reassuring and early physiotherapy started.  After six months I was attending a “lymph clinic” and measured for compression garments – ugly things but good for control!  A few lessons for self drainage techniques, my swollen and uncomfortable arm became a daily focus, there must be more I can do!

 compression sleeve photo

Compression sleeve and gauntlet photo courtesy Google Images, http://www.justcallushealthsolutions.ca

Google remedial massage – and I found Lisa Higgins – my lifesaver in so many ways.

Regular professional massage treatments have controlled my discomfort, mobilised my lymph flow and with her encouragement and happy outlook I feel good.  The compression garments continue, swimming and exercise do help.

Happiness is my friend,  Cathy

 

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Gee, those aren’t exactly the words you want to hear when you ask a client how they felt after their last treatment.  “It felt really weird”.  Hmm.  Let’s backtrack a bit.

“A” came in for her first treatment in May.  She’d had a lumpectomy in 2012 and eight weeks of radiation.  She’d had some nodes taken but they were all clear.  She’d noticed swelling in her breast right after surgery but had enough on her plate and didn’t give it much thought.  It hadn’t gone down and had got a little worse.  She goes to the same cancer support group I go to and I had given her my business card a while back and she decided to give me a go.

When she came in, she had some pain and stiffness in the shoulder on the side of the surgery that was impacting on her exercise routine so I did some Emmett Technique quickly to release that then went on to the lymphatic work, clearing pathways away from the affected side and showing her how to clear her own nodes and tissue as well.  At the end of the session her shoulder felt better but she seemed a little skeptical about any difference in the fluid in her breast.  We booked her in for two weeks later.

Two weeks later she came and said that her shoulder still felt better but that the breast didn’t feel any different.  We did some more Emmett, but to both shoulders this time so that she would feel more balanced, then went on to the lymphatic drainage.  This time, while I was working, I felt like we had achieved good clearance and she said it felt pretty good.

 

She came for her next appointment and that’s when she greeted me with “it felt really weird”.  Luckily she followed that up with … “I woke the morning following the treatment and felt my breast and it felt really weird … there was no fluid … it was just breast!  And it felt like just breast for a full week and when it started to get fluidy again I got my husband to clear it away from the breast like you showed me.”  I had to smile, I think her husband clearing her breast is good on so many different levels, not just to move the fluid along but also to empower him to be part of her recovery, not to mention a bit of intimacy.  I think she’s a convert!

Sometimes I am totally surprised by someone’s will to live.  Not the will to fight or battle or any of those words that are thrown at cancer, but the will to live.  I think that’s the attitude of most of the ladies I see in my clinic, but every now and then, one person will stand out.

L is a tiny lady of 75 who has been through it all.  Breast cancer in 1988, colon cancer in 2001, breast cancer again in 2006 and of course all the various chemo/radio treatment that comes along with those.  She came to the clinic originally early in 2012 to see one of our osteopaths, who referred her to me as she was developing lymphoedema in her legs.  I started working with her in May 2012 – she was on chemo again and was very frail and had been told to take it easy, her response to that was “but it is so boring”.  She had always been fit, playing tennis, swimming, walking and doing yoga regularly.  Her goal was to be well enough to do her annual trip back home to Canada to see her family.  Her doctor tried to discourage her from going, because really, she was very frail.  We (the osteopath and I) worked with her up until the time of departure and said our good-byes not quite expecting to see her again, she was that weak.

Lo and behold, she came back in September 2012 having had an absolute blast on her holiday.  After some tests they found she had liver metastasis and it was inoperable.  More chemo, more swelling.  Then there was some surgery to remove a stent from her stomach and lots of antibiotics and more swelling.  Luckily she managed to get into Mt Wilga Hospital (http://www.mtwilgaprivate.com.au) for some intensive decongestive therapy so I didn’t see her for quite some time as they brought her swelling under control for her.

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photo courtesy google images

She started osteopathic treatment again in February and came for a lymphatic treatment last week as she had forgotten to tell a doctor about her lymphatic problem and she was given the wrong meds and her leg started to swell again.  Actually, she had to cancel her original appointment last week as she had severe abdominal pain and had to go to hospital but she made it in the next day (with an opium patch on to help with the pain) with apologies for inconveniencing me with a late cancellation!  In spite of her recent medical issues she’s started playing tennis again, once a week, “but only two games”.  One of my favourite conversations with her was about older people taking the same vacation every year, on the same cruise ship, eating humungous meals and getting fatter and fatter.  Not her ideal holiday – she needs to go and do and see things, otherwise it’s boring.

And her goal now?  To enjoy this year’s trip to Canada.  And that is what I call – the will to live!

 

Sunday 23rd June 2013 – Through another client I saw on Friday I found out that L passed away three weeks ago, with her children by her side.  They had come over from Canada to be with her at the end.  A beautiful ending to a story of courage and determination.  May she rest in peace.

Occasionally I come across a woman who goes “whoa, let me off this crazy roller coaster, I ain’t doing it no more!”.  The “it” I’m referring to is the conventional treatment for breast cancer – it goes something like this … diagnosis – shock – horror – tears – fear – anger – why me – surgery – chemo – radio – hormones for five years – sometimes followed by … what now – am I ok – fear – regular screening and hopefully eventually, the new normal.  Every diagnosis, every treatment and every recovery is different, it’s all so individual and the timeline for all this varies widely for every woman.  For some the chemo comes first, then surgery, then radiation, then hormones (but I suspect all the emotional aspects are there whatever treatment path is followed).  Then there’s the amount of surgery … lumpectomy, mastectomy, double mastectomy, reconstruction, no reconstruction, type of reconstruction.  Then of course there’s the lymph node removal.  All of this is exhausting both physically and mentally.  And it can be a time of finding out who your real friends are (sometimes that can be really surprising, people you don’t expect step up for you and some fall away).  This is the type of journey I see most in my clinic.

But there are a minority of others who either decide part way through or right from the start that the route of conventional treatment is not for them.  What they find themselves doing is fighting one battle with cancer and fighting another battle with the medicos.

I have two ladies walking this path at the moment, one who went the chemo path against her better judgement and decided to stop treatment and the other who chose from the start to do things more naturally.  Let me point out here that both of these ladies have seen the oncologists and surgeons and various other health providers, they are not doing it on their own and it is vital that if you make this decision that you continue to be medically supervised.

J had a lumpectomy followed by lymph node dissection, so all her nodes were taken from her armpit. No cancer was found in any of the nodes which was a blessing.  Since the surgery she has had fluid collecting in the breast tissue and arm and she wears a compression sleeve and has regular lymphatic drainage with me.  Right from the start she didn’t want the chemo/radiation/hormone therapy that was being suggested for her.  But she decided to start with the chemo and see how she went, setting the intention that it would feel like a hangover.  And it did, most of the time.  She started meditating, setting goals, eating better and surrounding herself with a support team to get her through the ordeal of chemo.  But she found herself getting more and more upset and feeling powerless.  After consulting with two holistic doctors and undergoing tests she decided to stop the chemo and focus on getting herself stronger.  She has also decided not to have the radio or hormones.  Her attitude is that “she had cancer, she is now cancer free”.  All cancerous tissue was removed from her body, she had a clear margin and her nodes were clear.  She continues to see her oncologist and has regular follow up tests, but is feeling much more in control of her wellness.

H was a different story.  When I first met her she had a lump in one breast but had declined to have it biopsied, choosing to modify her diet and lifestyle.  I saw her only once and was concerned because while I understand not wanting to jump on the roller coaster of conventional cancer treatment, I felt it was vital for her to have a biopsy. I didn’t hear from her for three and a half months.  I was a little nervous when she came in to see me again and asked cautiously what was going on in her body and to my relief she replied that she had had the lump biopsied.  Unfortunately it was cancer.  They suggested a lumpectomy but she chose to have a mastectomy so as to get a very clear margin, thus reducing the need for further treatment.  She underwent a reconstruction at the time of surgery.

ImageBreast reconstruction. Photo courtesy of Perfect Scars. http://perfectscars.com

She also had an axillary clearance and one node was found to be cancerous.  Her recovery from surgery has been free from complications, no swelling, great movement.  She is sticking to her guns and not having chemo/radio/hormones.  But again, she’s doing it under the supervision of a medical team and complementary therapists.  She will continue to have regular tests and follow up appointments.  She also takes the approach that she “had cancer and is now cancer free”.

For both women one of the most important things was getting their support team together – people who would monitor them, advise and treat them as they need.  But ALWAYS under medical supervision.

The main point of this post is that you have choices in your journey through cancer.  For most it is comforting to know there is a system in place to manage treatment medically, it’s a positive thing to know first I’ll do this, then this, then this. It’s ok to go with the flow and to be managed.  Some women feel they are not doing ‘as well’ as they cannot find it in themselves to make the choices, do the investigating. They want to be told what to do.  This has been proven to work.  For a few, it is important to realise that you can make the choice to do it differently, but it must be done in consultation with your medical team.

I’d like to thank Elizabeth, who gave of her time to  help me edit this entry today, without her, it wouldn’t have been as insightful.  She also sent me this quote -“The important thing is that people understand that it’s a process that has to be gone through, not a ghastly battle that you win or lose.’ (Joanna Lumley)

 

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