Archives for posts with tag: Breast cancer

I’m just back from a week in Darwin in the Northern Territory of Australia having attended the 2016 Asia Pacific Lymphology Conference.  I’ve made a very short video giving a few highlights for you to view  here.  I’ll be working on a few blog posts over the coming weeks to talk about what I learnt at the Conference.  I’m still processing all the information – my brain hurts!

header

 

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.

 

 

http://www.lisahiggins.ntpages.com.au

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.

http://lisahiggins.ntpages.com.au

It seems like a lifetime ago already – thank goodness I have my conference handbook to refer to because I wouldn’t remember one-tenth of the topics that were covered otherwise.

First up on Saturday morning there was a discussion on the relationship between clinical measures and underlying physiological changes – a couple of interesting points here – it has been demonstrated that tissue composition changes are evident in those with mild lymphoedema and that the impact of these changes depends on whether the affected arm is dominant or non-dominant.  What that means is that generally, there is more fat present in the unaffected limb if the non-dominant arm is affected!  Interesting.

Next was a presentation on segmental impedance thresholds for early detection and monitoring of upper limb lymphoedema. Early detection of LE is important for effective treatment outcomes so finding a way of measuring changes effectively is essential.  Segmental measurements of the arm with Bioimpedence Spectropscopy was shown to be a reliable way of measuring early changes after measuring one hundred women without a history of breast cancer or lymphoedema.

There was a clinical practice review of the pitting test.  The pitting test is widely used to assess oedema in healthcare, but there is no standardisation between clinicians – each person’s touch is significantly different.  Three different therapists performed a pitting test assessment on six women with unilateral breast cancer related lymphoedema.  The therapists were all reliable in determining whether the tissue was pitting or non-pitting but had less agreement on the tissue qualities.  This study reinforces the need to develop a standardised pitting test protocol with guidelines for interpreting the test results.

Assessment of oedema in the breast skin following skin-sparing mastectomy and immediate reconstruction.  As more women are choosing to undergo the above procedure it has been noticed that many experience oedema in the skin postoperatively but assessment of change has only been subjective so far.  53 patients were measured using the Delfin MoisturemeterD Compact to determine the percentage of fluid within the dermis.  The conclusion was that the use of the Mosituremeter allows accurate documentation of localised and sub-clinical oedema in breast skin following mastectomy and reconstruction.

A patient self examination survey for staging the severity of lymphoedema.  Fifty patients with either unilateral primary or secondary LE completed a number of questionnaires.  One form was repeated one week after either by email or posted off.  The patients were assessed with bioimpedance and staged by two therapists using the ISL staging system.  The results of this study are currently being collated.

Current overview of surgical treatment of lymphoedema.  Dr Suami spoke of the different types of surgical treatment available for LE: Liposuction, lymphovenous shunting, lymphatic grafts and vascularised lymph node transfers.  Refinements in microsurgical techniques and improved imaging devices may lead to the establishment of standard surgical treatment of lymphoedema – wouldn’t that be amazing!!

Liposuction.  The Macquarie University Cancer Institute is developing protocols for maximising outcomes for liposuction surgery for fatty lymphoedema limbs in Australia and NZ.  There are very specific criteria for eligibility and bioimpedance and MR imaging were used to determine eligible candidates.  Patients had pre-operative intensive treatment at Mt Wilga Hospital and there was a significant mean excess volume reduction pre-surgery.  The conclusion of this prospective study demonstrates that in patients with large non-pitting limbs with L-Dex and MRI indicating deep fluid pocketing, a brief pre-operative CLT (that’s MLD, bandaging and physio) session can reduce the liposuction volume needed to achieve maximum outcomes.

Liposuction in the management of persistent arm swelling following conservative management of LE – a similar study to the one above (Alex Munnoch happily admitted that Mt Wilga’s results of pre-surgical CLT seemed much more effective than what they were achieving!).  The conclusion of his study said that liposuction and continuous postoperative compression is an effective treatment for advanced arm lymphoedema.

Diet and its relationship to lymphoedema.  This was a very interesting talk by Dr Kieron Rooney, with whom I had the pleasure of talking during the lunch break – he had been drinking numerous fizzy drinks daily and eating junk food and suddenly realised he was doing research on diet but yet wasn’t reading his own advice!  He gave up sugar and lost a significant amount of weight which he has kept off easily simply by keeping off the refined sugar (yes, he does exercise too!).  He is looking to see what fuels the capacity for change of lymphatic fluid into adipose tissue.  It’s the advice we hear again and again, eat food in as close to its natural state as you can – avoid the processed food, stick with real food.  Right on!

Liposuction for advanced LE – impact of liposuction on limb volumes. Surgical treatment results from Macquarie University Advanced LE Assessment Clinic. The conclusion of this study stated that liposuction is a safe and effective option for carefully selected patients with advanced lymphoedema.

Liposuction for leg LE.  Alex Munnoch reviewed 7 years’ experience of performing liposuction for primary and secondary leg LE.  The conclusion of the review stated that liposuction and continuous postoperative compression is an effective treatment for leg lymphoedema, although obtaining 100% reduction is much more challenging, particularly in primary LE patients.

Vascularised lymph node transfer for secondary LE.  This was of particular interest to me because of my contact with Helen here in Sydney who has had the procedure.  (Helen, you have a lovely lymphoscintigraph!)  Lymph node transfer is emerging as a treatment for LE.  Eight patients who had tried conservative therapy and experience progressive swelling, frequent infections or inabilitly to tolerate compression garments were offered LNT.  All had MRIs, lymphoscintigrams, L-Dex readings and limb volume measurements pre and post operatively as well as ultrasound.  The early results indicated no significant volume reduction with LNT but there were subjective improvements in skin infection frequency, softer arms as well as maintenance of oedema control without garment wearing.

Finally, there was a presentation by Dr Susan Gordon of James Cook University on the prevention and management of lymphatic filariasis related LE. Very interesting talk – way too much info to put into a few words.

And that brought us to the conclusion of the Conference.  Oh wait.  There was the closing ceremony, the one with the Islander dancers, the one where they got poor victims up on the stage to try the death-defying hip gyrations that were exhausting to watch, far less try to do.  But well done to all who participated (I kept my head so far down it was almost in my lap!).

ImageImageImageImageImage

 

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

 

Visit my website here for more information

I had a new client on the weekend.  Her daughter had called a week before to check that I had experience working with breast cancer and of course I was able to reassure her that I did.  On Saturday she came with her mother who is visiting from Germany.

Mum had breast cancer in January 2013.  She had a mastectomy, no radiation or chemo and is on Tamoxifen.  Here’s the clincher … she’s been having MLD in Germany every week since her surgery!  In Germany MLD is provided on Medicare, free of charge.  My goodness, wouldn’t that be nice here in Australia – that is the way it SHOULD be.  That way the risk of developing lymphoedema is minimised significantly.

I have to say I was a little nervous – here was someone who has had a lot of MLD, in a country where it is a way of life.  To me it would be a test of my abilities and in my own head I was worried that my technique wouldn’t be up to what she received in Germany (even though I get fantastic results and am totally convinced by the efficiency of the training I have received).

Daughter stayed in the room during the treatment as Mum spoke no English and she was avidly watching the process.  I could see that after I had created pathways away from the affected axilla to the unaffected side and down to the nodes in her groin and started on her arm, she had questions.  So I explained how we cleared the arm, moving fluid out from the midline to the outside of the arm, away from the armpit, then moved it along the outside of the arm up to the neck area.

Image

Photo courtesy Google Images, http://www.northernpts.com

At this stage, she translated for Mum what we were talking about and Mum’s response was that I was being much more thorough than anything she had in Germany!  In Germany they don’t seem to create pathways down to the groin, certainly not to the level that I’ve been taught.  And the arm work is much more intricate than what she has had before.  And she loved being turned on her side and having work done to move the fluid away from the armpit and towards the deep nodes lining the spinal column.

It was a lovely confirmation on just how effective Vodder treatment is and I’m so pleased that I took the time last year to requalify in the technique.

I had a very different afternoon on Friday.  I pencilled it into the diary as “bra ladies” because that is exactly what it was, an afternoon of trying on bras.  And not your usual lingerie … post breast cancer surgery bras … post lumpectomy, post mastectomy or post reconstruction.  Post any of the above.

On 27th June 2012 I received an email from the organiser of the Cancer Support Group I attend (Active Women Touched by Cancer, Celebrating Life) saying she’d received an email from a lady called Tina who had cancer treatment and a mastectomy and reconstruction while in her 30s. Tina found that since the reconstruction she couldn’t find pretty and most importantly comfortable bras so she set about designing her own!   She was looking for women willing to talk about their experiences with finding comfortable bras to find out exactly what they liked or didn’t like about what was available, what they wanted to see, where they would buy them from, costings and all the relevant details.  I emailed Tina and said I’d be happy to be involved in any way possible as I knew lots of my ladies struggled to find comfortable bras that didn’t look like they were designed for your great-grandma.

We’ve had numerous email exchanges over the last year and a half.  Tina received her first prototype but was utterly disappointed with it and had to start again.  Bear in mind, this is a personal project, she has no backing or funding at this stage, so a setback like having to start all over was huge.

Here’s what Tina has to say:

Finding a company to produce the bras was a challenge.  The ‘journey’ (that word again) took me virtually via emails and Skype to Europe.  The European company understood my brief and vision.  What I love about working with the company is the beautiful attention to detail, quality, the European touch, the pride in the workmanship.  They have been an absolute pleasure to work with.  I also felt that having the bras made in an European country gave them that extra touch that I was seeking that China was unable to provide.

My design brief was to design lingerie that was European, sexy and fashionable.  The lingerie also had to accommodate the breast form securely and be comfortable to wear.  The pocket had to be in cotton.  Why?  Because most breast cancer treatment (not all) places the woman in menopause.  This means the woman experiences hot flushes and sweats and makes wearing a breast form in a bra with pocket polyester lining uncomfortable.  Cotton lining just seemed logical and it has the properties to absorb moisture and keep the wearer cool.

Which brings us to Friday afternoon.  We had five ladies in my clinic who had been through cancer, plus me. Tina brought along some examples of what was already available on the market for comparison and six designs of her own from two different producers.

The first person to try on had had a lumpectomy and had a “chicken fillet” insert to help fill out the affected side so she popped into the loo and came out to show us how it looked with her insert in.  She loved how it felt, particularly the cotton lining next to her skin – her current bra has a different lining which sometimes makes her feel a bit sticky and sweaty, so cotton was a nice touch.

The next lady who tried on had a double mastectomy and tram flap reconstruction seven months ago and nipple reconstruction a few weeks ago.  She had some swelling still in one breast.  She came out and modelled a different bra but had the same comments on comfort and design.  Great.

The third lady recently had lat dorsi reconstruction about three weeks prior and was also still swollen.  She hadn’t worn a bra in about five years because she couldn’t find any comfortable ones out there.  She had absolutely no inhibitions and whipped her top off and tried the bras on right there – again – in heaven.  She tried them nearly all of them on and was happy each time.

There wasn’t the right size for the fourth lady to try on but by that stage everyone was showing off their scars and ooohing and ahhhing at how good things looked – “wow, you can barely see the scars; wow, you’ve got nipples; wow, look how well you’re moving after such a short time”.  Nothing like a shared experience to bring people together.  I’m sure the laughter was heard for blocks!

We discussed how much everyone would be willing to pay for them – oh, did I mention she’s going to design undies to go along with the bras so you can have a beautiful matching set?  And where you’d buy them from.

Here’s a photo of the three winners of the day:

Image

Red Fern Lingerie, tina@redfernlingerie.com.au

If you’d like any more information or would like to try on the bras and give your opinion, please contact Tina Doueihi at tina@redfernlingerie.com.au or on 0407 359 751.  Her website http://www.redfernlingerie.com.au will be up and running soon.

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!

The Angelina effect.  Amazing how much press Angelina Jolie has received after the revelation that she had preventative surgery to reduce her risk of contracting cancer due to testing positive for the BRCA gene.  I think it’s a positive thing that she has shared that decision.  I can’t imagine how hard it must be to have generations of women in your family die early (usually) from breast or ovarian cancers.  And as a male who has inherited the gene – would you consider prophylactic surgery?

When my eldest child was about ten years old, the mother of one of his good friends passed away from cancer.  All I knew at the time was that it was an inherited cancer and her mother, grandmother and aunts had all died early too.  I knew nothing about the gene then, in fact, I don’t think many people did.  My son is still very friendly G and I’d love to talk to him about it, but it’s not something I feel I can do.  I know that his elder sister got married recently at about 23 years old and it’s amazing, I wondered at the time why so young.  And then I remembered …  she probably wants to get her family started early.  Coincidentally, one of my clients was talking about a wedding she went to recently, that the bride had tested positive for the BRCA gene and I recognised who it was.  She is close to the family and also told me that a few weeks after the wedding A had both breasts removed and a reconstruction.  It must have been a difficult decision but I am sure that the relief she must feel from knowing that she has significantly reduced her chances of breast cancer must be a comfort.

I have spoken with Krystal Barter and read all about her story.  She is the founder of Pink Hope (www.pinkhope.org.au) and I find her strength and proactivity (is that a word?)amazing.  Here’s a brief description of Pink Hope, from their Facebook page … “Pink Hope is a registered charity, established and founded by Krystal Barter in 2009 whilst recovering from her preventative double mastectomy. Having experienced the isolation and lack of information for high risk women Krystal created Pink Hope for women like her.”  Krystal’s story is that she tested positive for the gene and there’s evidence of women in her family dying from cancer back to her great-great grandmother.  Each generation of women developed cancer earlier and Krystal’s mother was diagnosed at 36, when Krystal was 14 years old.  At 22 she had the test and positive result.  By then she had a new baby and was in a relationship and felt strong enough to deal with the news.  She had a second child soon after.  But the stress of living with the gene started to really affect her, should she watch and see, monitoring regularly and dealing with it when it came or should she minimise her risk with a double mastectomy.  At 25 she decided to have the mastectomy.  When she went in for her last high risk screening  she was told there were changes to the breast tissue that were not there before – she had signs of early breast cancer – a DCIS.  She had the surgery and tests showed that her cells were about to change, but they had been removed before they were able to do so and she had become the first woman in her family to avoid breast cancer.  She has since had a third child.  Right after surgery, while sitting in her room feeling sore and sorry for herself she decided she would help other women who were faced with the same decision as she was and she started working on Pink Hope.

KrystalKrystal and Bonnie – photo courtesy http://www.pinkhope.org.au

I have had many women with breast cancer come through my room.  Strangely enough, not many have tested positive for the gene and in one case, even though E had a negative result, she has had breast cancer (three times) and ovarian cancer!  Apparently you can test negative but still have a high tendency to contract cancer (her mother is also a client and she has had a melanoma) – I personally find that a hard concept to grasp, that differentiation.  My client says if she knew then what she knows now she would have done things differently for sure, but other than not being able to have children, her bouts of cancer have not stopped her living life fully.

One of my regulars has just had a double mastectomy and reconstruction because after 25 years of monitoring because she was high risk (no gene) she finally developed a DCIS and decided that rather than spend another 25 years of waiting and wondering, she’d rather reduce her risk with the surgery.  Others have taken off the other breast and reconstructed both.  Again to minimise the risk.  Not quite the same decision, but a courageous one all the same.

What has the Angelina effect meant for Krystal and Pink Hope?  A lot of new media coverage and information being shared with those who need it.  Pink Hope is a charity and receives no government funding, so this extra publicity has meant the possibility of donations from other sources to maintain their website, continue to develop resources and offer support groups.  If you’d like more information, please visit Pink Hope at http://www.pinkhope.org.au.

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.

Image

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.