Sometimes life does not go as planned!!

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I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

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Surgery with Dr Chang for arm Lymphoedema

imageKim shared her surgery story via a comment so once again I have created a post so everyone can see it… Sharing our stories helps others with their own journey. Thanks Kim

“My transplant story started when I saw an episode of grey’s anatomy. The has a breast cancer survivor with lymphedema that was having surgery to alleviate the symptoms.

I had stage 3a breast cancer. Right breast and a large amount of lymph-nodes removed. I went through chemo and radiation, but it was during my reconstruction that my right arm started to look like it belonged to Popeye. I went to my oncologist and after a few tests was told I had lymphedema. Months of therapy and wrapping at night, compression sleeve during the day and extreme low sodium diet. I managed for 4 years, carrying my wrappings and compressor all over the world I travel a lot as an engineer.

I started researching Dr Chang about 2 years ago. He was in Houston at that time and the work was experimental. When I checked back last May, 2014 he had moved to the university of Chicago and the were getting more approvals than ever to perform the surgery. I made the appointment and my family and I went to Chicago. I met with Dr Chang. Nice man. He explained I was a good candidate for the bypass and transfer. I was told each state is different for the coverage on this surgery and that they would submit and let me know. I got approved quickly. I scheduled for December 2014-during my winter break. James-my patient advocate was very nice, the only stress I had was discontinuing the tamoxifen for the two weeks prior to surgery. Dr. Chang indicate it makes the blood thicker and could interfere with the surgery.

We arrived the day prior to the surgery and went to the university of Chicago for pre-surgery stuff. I was able to have my arm measured in Texas to bring with me. Dr. Chang took before pics and other details. We went back to the hotel and went to bed early. Had a 5.30am surgery so we were up at 3 am. Family packed up and went by cab, you do not use cars unless you live there. We were first into pre-surgery and got a bed quickly. I went in about 7.30am and stayed way longer than expected. I went into recovery at 2pm. My recovery was supposed to be 30 minutes but I stayed in there until 9pm. I had breathing complications I wanted to hold my breath:). My family finally saw me at about 7 pm and left for the hotel. I was moved to a room and told that I was on bed rest until they determined if I needed further surgery. Therefore the catheter had to stay in and a no food order was given. I was miserable. I had not be told to take a laxative prior to surgery and I wish I would have. I had a machine hooked up to my arm to determine flow, a Doppler. It sounded like a heart beat. I also had a machine for pain medication. I did not use at all and pain was not bad. I was told my bypasses, I had 3, were working well. I also had the node transplant from my neck. Very long scar, just another badge.

I had to stay in the hospital Friday through Monday and stay in town until Wednesday. They wanted to make sure there was no complications. We flew United into Chicago. No cuts in fees.

Many doctors came in daily to listen. I had a complication, the drainage from my neck was not clear and it was determined that I could no longer eat fat until the drain was removed. I am currently low sodium, under 1000 mgs a day. They took fat away from me and I lost 12 lbs in 3 days. When my diet was changed, I got no explanation why. I had to find out on the Internet. In fact they cancelled all of my food orders and I got no dinner one evening. The nutritionist popped by but did not understand lymphedema so I sent her on her way!! I finally got to see the arm when the physical therapist stopped by. It is smaller, I am happy to report. Oddly the docs that came by never checked it. It was a bit depressing to take a wrapped arm home.

I was finally released. I had two drains to come with me. One under my right arm and one in my neck. I was able to get around but tired easily. Our Travel day was Christmas Eve. I called tsa cares the day prior to leaving. They were not great but they connected with the tsa at the Chicago airport-who was amazing. I was so concerned they would try to unwrap me or try to pat me down. They did not. They met us and escorted us through, they even walked us to our gate. I cried in relief

We got home… tubes dried up over a few days and my husband removed them, Dr. Chang showed him how. About two weeks later my husband removed my sutures. I did have a deep suture that created a bump but is going down. No driving, lifting or sex for 4 weeks. I am past 4 weeks now. Arm is still wrapped. I unwrap an hour a day for showers. I will be measured for a new sleeve in another 3 weeks. I am told the transplants could take up to 1 year to work.

My arm is looking good. I am still low sodium.

Learnings: take a laxative prior to surgery, ask about required bed rest, stay on your diet and wrapping prior to surgery.” By Kim

Thanks Kim for sharing this with us.. Could not agree more re the laxative as would have been much more comfortable post surgery!!! It is great for everyone that we share our experiences… Helen

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

How to protect yourself after lymph node removal during surgery

Nearly thirteen years ago I had surgery for Uterine Cancer, included the removal of 22 lymph nodes from the groin area. Follow up treatment was a month of daily radiation which damaged more of the lymphatic vessels. On leaving hospital I was given a bookmark which told me how to protect myself from Lymphoedema. It was given as a bit of a sideline and not much emphasis given to the importance of protecting my legs, or even what Lymphoedema actually was!!! The other day I was having a bit of a tidy and found this bookmark. Oh how I wish had read it more and realised how important it was to keep my limbs safe!! I think I had managed to break all the rules within the first few weeks including flying with no compression garment and taking a sauna!! No wonder my Lymphoedema started quite soon after treatment. I wish someone had told me how very important that bookmark was, how lymphoedema is a lifelong problem that you have 24/7….

Please share this with others so that they may not have to deal with this problem, or at least have some time before it starts, or are able to protect their limb from getting worse. Any time lymph nodes are removed during surgery there is a risk of Lymphoedema. Below is the bookmark I was given that seemed so unimportant, when in fact it was the most important piece of information I was leaving the hospital with!!

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This is a previous post I wrote with a link to the American Cancer society on Protecting yourself from the risk of lymphoedema post cancer surgery. I have Lymphoedema in my left leg but I must also remember that my right leg is at risk so I must always be very vigilant in caring for both of my legs.

https://lymphnodetransplant.wordpress.com/2013/07/23/precautions-to-lower-the-risk-of-lymphedema-after-cancer-treatment/

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

The SCAR Project… Breast Cancer is not Pink!

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To day I went to the SCAR Project exhibition in Sydney and met the photographer David Jay.  I was able to chat with him about the exhibition.

http://www.nbcf.org.au/Support-Us/Events/The-SCAR-Project.aspx?utm_source=google&utm_medium=ppc&utm_campaign=scar

I have seen the pictures online of the scars carried by women after Breast Cancer treatment, but to see them full size and read each story will soon tell you that Breast cancer is NOT PINK!! The women are aged 17-35 years old and some have died since taking part in this project. In the past year I have learnt a great deal about breast cancer from reading blogs, hearing personal stories of treatment and on going metastatic Breast Cancer. If you ever have the chance to see this exhibition I urge you to go. You will leave with a better understanding of why Pink makes so many upset and gives the wrong impression of Breast Cancer.

http://thescarprojectblog.com

http://www.thescarproject.org/david-jay/

Link to images
http://www.thescarproject.org/gallery/

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

It is not just a little bit of swelling!! Lymphoedema

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This is a guest post that I did for the blog “Nancy’s Point”  …  I feel it is important to repost it to continue to build awareness and understanding of the problems associated with Lymphoedema. Nancy writes a wonderful blog on her experience with Breast Cancer and as we know Lymphoedema can be a side effect of Breast Cancer treatment. In fact Lymphoedema can be a side effect of any cancer treatment where lymph nodes are removed. There is also Primary Lymphoedema where people are born with a weakness in their lymphatic system, issues can arise at birth or later in life. Lymphoedema is often misunderstood and the impact on quality of life is often unknown. I hope this post brings better understanding.

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It is not just a bit of swelling! Lymphedema

I am very excited to have been invited by Nancy to write a guest post on Lymphedema, as March is Lymphedema Awareness Month. Approximately 10 million Americans and 100 million worldwide suffer from Lymphedema, as stated by the Lymphatic Education and Research network this year, but there is still much ignorance, misdiagnosis and misunderstanding around this condition. In this post I will be writing about Secondary Lymphedema but we should also acknowledge those with Primary Lymphedema who were born lacking important Lymph Nodes in parts of their bodies. Even though so many people suffer from Lymphedema, few know about it, unless they have it themselves or know someone.

My journey with Lymphedema started at the end of my treatment for Uterine cancer 12 years ago and like many, the removal of Lymph nodes and follow-up radiation destroyed part of my lymphatic system, leading to swelling, discomfort, pain, lack of mobility and infections. I remember seeing my surgeon before my radical hysterectomy, I was concerned over the removal of the lymph nodes, as I felt I still needed them!! His response was, ” It is better than being dead!” Needless to say that was the end of that conversation. During surgery I had 22 nodes removed in the groin area and 28 sessions of pelvic radiation. The Lymphedema came up as soon as I finished treatment. We have between 600 and 700 lymph nodes in our body, but when crucial nodes are removed, (radiation and surgical scarring also destroy the surrounding lymphatic vessels) fluid will collect in the limb and cause Lymphedema.

Three litres of fluid a day is removed from the tissues via the lymphatic system and passed into the circulatory system. The lymphatics are the “garbage disposal system” of the body with the lymph nodes acting as a “Cleansing system,” purifying, filtering, destroying bacteria and toxins. It is however, sadly the way that cancerous cells spread to other parts of the body, hence their removal during treatment. The lymphatics are an important part of the immune system and removal of nodes leaves one vulnerable to infection in that area. Unlike the vascular system the Lymphatic system requires the movement of muscles to push the flow of lymph through the body, there is no heart pumping as in blood flow.

When my leg first started to swell I was really scared, it felt like a tree trunk, heavy, uncomfortable,unsightly, my normal clothes would not fit and I felt self-conscious. Fortunately a friend told me about a workshop that was being held at Westmead hospital in Sydney. There I found much-needed help, a rehabilitation hospital, Mt Wilga in Hornsby, that specialised in treating Lymphedema. There followed five weeks of Complex Bandaging, Manual Lymph Drainage and Laser. My leg was thickly bandaged like having a plaster cast on. These were removed only to shower, which I did at the hospital, I drove each day from home for this treatment. At the end of five weeks my leg had reduced in size to just a little bigger than my good leg. I was then measured for a compression garment, from waist to ankle on the bad leg and to the knee on the good leg, a real passion killer!! I felt miserable. However over the years I spent a great deal of time walking in water which really helped the swelling, as it acts as a natural compression. Exercise is essential to help the lymphatics, as they need movement to function, elevating the leg whenever possible, raising the end of the bed all helped and eventually I was able to convert to just a compression stocking on the bad leg. Importantly when ever I fly however I wear compression tights to protect both legs from further damage. Though I have never done it myself yoga is very good for helping Lymphedema.

This would have all been manageable, but I experienced repeat infections, even though I was very careful to look after my leg well. These infections called Cellulitus, caused by the lack of “cleansing” nodes, would come up in half an hour and require a trip straight to hospital for intravenous antibiotics for ten days. Needless to say this impacted on my work and home life but we managed. That was until 2010 when an infection spread to my heart and I was diagnosed with Pericarditis. Fluid was removed from around the heart and I had four weeks of strong antibiotics via a PICC line, as it is almost impossible to find a good vein in my arms due to previous treatment.

After this I started to look for alternative treatments for the Lymphedema. Something that would maybe cure the Lymphedema or lessen the infections. I found out about Dr Corrine Becker, who pioneered Lymph Node Transfers in Paris, and sent her an email to ask if any Doctors in Australia did this surgery. She had trained many doctors in the US and elsewhere but not Australia. I continued to send out emails to the various Lymphedema specialists. One day a reply came inviting me to join a research program at Macquarie University Hospital in Sydney, started by Prof. Boyages, who is a Breast cancer specialist. As is the case overseas much of the research into surgical intervention for Lymphedema is funded by the Breast Cancer community, due to the high incidence of Lymphedema in the arms of patients after treatment for Breast cancer. He and other doctors wanted to find a way of helping patients with arm Lymphedema. They realised that this was not just about a “little bit of swelling”, but a life changing side effect of treatment that was affecting patients, mentally and physically, as well as becoming a financial burden for the rest of their lives. In some cases surgery is now being done as part of the reconstructive process, as the sooner new nodes are put into the arm, the better the response. Nodes in this case are often taken from the groin and placed in the armpit. Other patients may have it done years after the onset of Lymphedema and may also need some liposuction to remove stubborn fibrotic areas. There has been great success in improving the arms of these patients and giving them a better quality of life. Surgery for Lymphedema of the legs is more recent and takes longer to see results. In some cases two transfers are needed to groin and lower leg. For a patient to be eligible for LNT to arm or leg they need to be assessed by a surgical Lymphedema specialist. Their Lymphatic system would be mapped to find suitable nodes to harvested and the best position for placement to get maximum results.

March 14th 2013 I had the first leg Lymph Node transfer in Australia, Lymph nodes were taken from my neck and placed in my left knee. I started to create a blog about this, as I felt it needed to be documented. I called it “My Lymph Node Transplant,” it has now grown to include many articles, videos and stories that I feel will help people manage their Lymphedema. It is also a great resource for those who are having Lymph Node Transfers or other surgery world-wide for Lymphedema, in both arms and legs, as this is now becoming more common. My leg is doing well a year later the nodes are growing but it is a slow process, so far I have had no infections and that makes me very happy!! The hope is that as the surgeons become more experienced this will become a viable treatment for Lymphedema.

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Help with self-care… Videos

These two videos were created at Mt Wilga Rehabilitation Hospital so that people who could not come to the hospital for therapy could benefit from their program…. One video is for lymphoedema of the arm and the other for legs. Some of the video content is duplicated but has individual topics for legs and arms.. The portion which shows self massage is very important for self-care. What I have learnt is the importance of clearing the abdominal area… The “basin” which is the area below the rib cage between the hip bones and pubic bone. Using abdominal breathing and then massaging into this area, to stimulate the many lymph nodes we have in the abdomen, you can actually start to feel the abdomen gurgling when you do this. It is also something you can do several times a day. Remember … Clear the Basin… This is a great help for those with leg lymphoedema as the lymph from the legs can then be cleared upwards and then eliminated from the body. I hope you find these videos helpful..

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Lymphedema Awareness and Breast Cancer

imageReblogging this as it is such an important topic after treatment for Breast Cancer… It is that nasty hidden secret known only to those who have it or live closely with someone who has it… Thanks so much Denise

March is Lymphedema Awareness Month.  I deliberately posted this toward the end of the month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force…

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Helping each other.. Building Awareness..

This morning when I was checking the Lymphoedema pages and groups on Facebook I saw this post from Kristin who runs the Newcastle Lymphoedema Clinic. http://www.facebook.com/pages/Newcastle-Lymphoedema-Clinic/213474748824277
March is Lymphoedema Awareness month and it seemed a pity that her article would not be seen, in the Newcastle Herald, having taken the trouble to write it. Therefore I offered to post it on this blog so that people can learn the early signs of Lymphoedema. Please find the link to her web site at the end of this post.

“Kristin Osborn – Lymphologist
Cert. CLT, Cert. Lymph Dissec. Dip. R.M., Dip. M.Sc. Cert. T.A.A. Cert. Bus. Mgt.
Member: AMT, LAV, LAQ, ALA, Hunter Wounds, Int. Wounds, Cancer Action Network, BCNA, Nat. Lymph. Network Inc. US. Medical Reg. Aust.

Complex Lymphoedema Therapist – Lymph Drainage, Compression Garments and Bandaging, Laser, Kinesio Taping, Exercise, Diet and Travel Advice. Australasian Distributor of the Reid Sleeve Compression Garment and holding the Largest Lymphoedema amd Lipoedema Products Range in Australasia.
“I am excited to share and help you with the latest in Technology, Education, Techniques and Advice assisting and correcting the way your Lymphatic System works.” Kristin Osborn …. Kristen is also the guest speaker at the Lipoedema conference held in Sydney..

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“Wanted to express how disappointed I was about creating awareness for Lymphoedema Awareness Month March. I wrote an article to go into the Newcastle Herald with a pull-out section for who might get Lymphoedema and the “Signs and Symptoms” for people to look out for and in all the wonderful wisdom of the journalist, she decided to cut it to pieces and put it in a place where no one could find it!, so much for creating awareness.” Kristen

This is the article originally writen for the Newcastle Herald

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National Lymphoedema Awareness Month March 1—31st
“It’s Cool to be Kind”

Lymphoedema is a progressive chronic disorder of the lymphatic system. It occurs when the lymphatic circulation fails to function correctly, causing severe, painful and debilitating swelling. Early diagnosis and specialised management is the primary effective treatment. Lymphoedema usually affects the limb(s) but can affect the trunk of the body, head, breast, neck and the genital area.

There is no cure only management using Manual Lymph Drainage, compression garments and complex bandaging. Lymphoedema affects people of all ages and if not treated early can lead to regular hospitalization , due to infections and have devastating effects both physically and emotionally. Only early diagnosis and treatment can reduce the progression of lymphoedema to minimise its impact and limit complications.

There are many causes of lymphoedema, including some people born with a genetic predisposition. (Primary Lymphoedema) These people may develop lymphoedema at any stage during their life, mainly during major hormonal cycles of puberty, pregnancy and menopause. In addition, any major damage to the already fragile lymphatics caused by surgery, (Cancer, Cosmetic, Knee and Hip Replacements, Broken Bones, Parasitic infections and Venous issues) can cause Lymphoedema to start.

Secondary Lymphoedema is caused by the treatment for cancer, where the lymph nodes are removed or damaged and patients undergoing radiation therapy. This is often seen after Breast cancer treatment or gynecological cancers also Melanoma removal and Prostate Cancer. In fact any treatment where Lymph nodes are removed for what ever reason. However if diagnosed and treated early, this distressing and debilitating disorder can be controlled and reduced, infection prevented, range of movement of the affected area can be improved and the quality of life can be greatly enhanced.

People who are at risk of Lymphoedema, either due to a genetic predisposition (family history) or after cancer treatment, should be aware of the early signs. Many people experience early symptoms of lymphoedema but don’t recognise them so it is vital that these high risk people learn the signs of lymphoedema and seek early diagnosis and treatment.

Early signs and symptoms of lymphoedema can be intermittent or permanent and may include:

1. Intermittent or permanent swelling of the limb
2. Infection
3. Feelings of heaviness and stiffness
4. Limitation of movement
5. Temperature changes of the skin
6. Tightness of Jewellery, Clothing or Shoes
7. Swelling may worsen due to heat, over use, sustained positions and prolonged inactivity or become more obvious at the end of the day.

For more information and assistance please contact Kristin Osborn at Newcastle Lymphoedema Clinic on 49 20 70 10 or visit the website at http://www.newlymphclinic.com.au/

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Lymph Node Transfer – 1st Surgery Complete

Sharing Rachael’s post of her Lymph node Transfer after Breast Cancer.. Thanks

Rachael's Lady Lumps

This will be a miss-mash of information pieced together.  Mainly because I have to type small sections at a time because of the pain in my right arm from surgery.

For those following my blog for the last 2 years, you know why I had this surgery done and the events that carried me to this point.  For those of you that just found this blog because you are searching for information on a Lymph Node Transfer procedure, I will do my best to fill you in quickly.

Background: Diagnosed with Stage 3 Breast Cancer 2/14/2012.  Bilateral Mastectomy with 11 lymph nodes removed from my right arm and 9 lymph nodes removed from my left 3/2012, 8 rounds of chemo 7/2012 (lymphedema started in right arm during chemo), 28 days of bilateral radiation 10/2012 (lymphedema started in left arm at this time), breast reconstruction and port removal 4/2013, 3D areola…

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Part 3 Breast cancer, Lymphedema and Lymph node transfer by Lisa Jenni

imageONE EXCEPTION…. By Lisa Jenni

If I have to point out one single item of the long list of treatments and garments, the thickly padded JOVI-Sleeve has turned out to be my lifesaver!

Every night, up to the night before LNT surgery, I was wearing this sleeve to return most of the fluids accumulated during the day. It kept my arm soft, but it still couldn’t stop some fibrosis on the lower outside of my left elbow and the back of my hand, and the climbing overall accumulation of fluids. My PT shrugged her, called it matching “Popeye”-arm and said: “that’s the way it is, you got to deal with it” On a personal level, this has been one red thread through the years, resignation and fake empathy on the caregiver’s side.

I cannot overstate how ecstatic I became when I found the video conference/symposium from Lymphatic Research Foundation in June 2013, where Dr. Chang was one of the featured doctors. I watched the video links over and over and was immediately convinced this is my Tour du Liberté from Lymphedema! My oncologist at once contacted the hospital in Houston, but only got the devastating return that Dr. Chang wouldn’t take new patients…
…never say never, – a few weeks later in August, I got an excited call from my Dr.’s office saying I must call for an appointment with Dr. Chang at the University of Chicago Hospital, where he relocated recently.

October 21, 2013:
I was seeing Dr. Chang in his offices at UC Hospital. I was so pleasantly surprised what a friendly, warm and approachable person he is, quite funny and zero bad celebrity manners at all. He asked me about my history, examined my lymphedema arm and confirmed quickly that I am a good candidate, however not for the bypass surgery. My skin thickening (fibrosis) on my hand and lower arm has progressed too much. He classified my lymphedema as Stage 3 and recommended a full reconstructive lymph node transfer, which would ensure the best outcome. We agreed to send out for the insurance acceptance.

4 weeks later the insurance agreed to pay (minus my deductibles). The surgery was scheduled for Friday, Dec. 13, 5:30am, thinking – WOW, that’s early! Maybe it’s a good thing being first… After I had the fixed date, I arranged flights and hotel rooms for my husband and me. We had to travel at different times and days, so I was hacking away on my laptop like a travel agency.
Fortunately, my husband and I signed up for an additional employer-sponsored and tax-free healthcare account, which we’re going to tap in to pay the deductible and hopefully some of the travel expenses related to the prep and surgery. At least, my husbands’ flight came out of our airline award points. You gotta use what you can find!

December 10, 2013:
I flew from a freezer-cold Seattle into a even more freezing cold Chicago, where I had booked a hotel down town, so I could visit the Christkindlmarket on my day before surgery.

December 11, 2013:
The weeks before, I lined up all my pre-op appointments to this day, including the anesthesiologist, and measurements taken of the arm/hand by PT.
Dr. Chang drew with a black Sharpie lines where the incisions will be, took several photographs for documentation, and I signed all papers necessary. He also promised me to inject dye into my finger area, and depending what will be visible, he’ll perform micro-bypasses at my lower arm. And my Friday early morning surgery time has been pushed to 12noon, because he wanted to have as much open time as possible. – Much needed, turned out.

Friday, December 13:
I was so ready to be prepped for surgery, but some complications before my case were occupying the surgeons. Finally, by 2:30 pm, I was wheeled into the OR, and 6 ½ hours later woke up from the anesthesia. I guess, I’m a lucky person not being allergic or even sensitive to any of the many chemicals put into my body. The surgical team said everything went well. I was freezing cold, felt dehydrated, but so heartwarming happy and elated, beyond any description. IT has happened.

Day 2 post-op:
I observed the young assistance doctor opening my very lightly wrapped arm. He showed me 4 incisions with two successful bypasses at my wrist. I was tearing up, because I could already clearly see and feel the difference. The arm was so soft, lighter in weight and less in circumference as I could only achieve with the heavily padded JOVI sleeve plus wrapping on top of it for days in a row.

Day 3 post-op:
I was discharged from the hospital and my husband settled me into our comfortable hotel room not very far from the medical campus (Hyatt Place runs a free shuttle to/from the medical center). Now, I’m on pills for pain control and antibiotic, but besides the first 3 hours after the “moving”, the pain was well controlled.

Day 4 post-op:
The first visit with Dr. Chang went very well. He was pleased over the outcome, the stitches are holding well, so the scarring should be minimal (we’re still talking major incisions). He was able to remove the JP drain at the axillary, and instructed me to NOT put any pressure or pull on the surgical site were the new lymph nodes have been implanted. I’m not to lift my arm more than about 33 degrees for the next two weeks. The lymph nodes should have settled in by 6 weeks after surgery.

Day 7 post-op:
I wake up every morning with a smile on my face, realizing my dream has come true. My body finally will recover from the horrible side effects of radical breast cancer treatment. The constant drain and battle is over. I do not care about any of the to expecting scars; I’ll wear them like a diamond necklace (funny, the price might be the same ;-))

The donor site incision’s drainage keeps weeping way too much fluid to get the drain removed. However the liquid is rather yellowish-clear, not bloody and I’m getting used to the thought to fly home to Seattle with the JP drain at my collarbone still attached. – Minor sideshow, no big deal, or maybe even a good thing as it reminds me to be very, very gentle with my body as I’m traveling home. Besides an occasional lightheadedness walling up, I’m feeling so well, it’s almost too easy to get into old natural routines.

This has been a long and dark journey. It ripped me out of the happy life I knew with brutal force, made me depressed and tearful, and it’s now time to be closed happy and tearful. I know it’ll all be good, I trust. Thank you, Dr. Chang.

Thank you so much Lisa for sharing your journey with us…. Now to relax and heal… This is a link to Lisa’s Blog if you would like to read more from Lisa and enjoy her wonderful art works… http://think-quilts.com/

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