Thank you so much! :)


Thank you, thank you so much for all the support you have given me in the creation of my New Blog, it has been just amazing with over 500 views in just one day. I have also had many, many beautiful messages of support and encouragment which have really lifted me. When I started to blog I had no idea how it would go, if there would be any interest but it has spread across the world and is now read in 127 countries, truly amazing. There have been nearing 100,000 views and 272 posts. Many if you have created posts for me and I hope you continue to do so. Just email me at to share your story. I would still love to hear from someone who has had the lymphatic lyposuction, SAPL proceedure.

I would also like to ask everyone no matter where you live to encourage your goverment to give support to Lymohoedema. It has been far to long that Lymphoedema has been ignored by goverment health programs. Everyone should have access to the treatment that they need and the garments that they need to wear. The burden should not fall to the patient, in which case many do not get the care that they need and the Lymphoedema becomes worse and worse. Please give Lymphoedema and voice, a loud voice. Lets hope that more high profile people like #Kathy Bates start to speak out instead of hiding their problem. We have become a “cyber community” of fellow lymphies who are there to connect and support each other, we are no longer alone or silent.


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Some questions to help Lisa pre LNT

imageLisa sent me an email prior to her LNT…. As you can see she would like to hear how people are progressing, plus any advice for before and after surgery. What we all need to remember is that everyone is different having this surgery, the condition and size of the leg or arm, plus general health. This makes it hard to compare progress, as some will respond more than others plus some quicker than others. Always remember to ask lots of questions and comply with pre and post surgery protocols for the best results. Also each surgeon is different in what his protocols are, some are very strict and some not so much. The biggest thing to remember is you need patience, this is not an instant fix and it can take up to a year to even see small changes.

If you have advice for Lisa please use the comments to pass on your support to her. We would all love to hear how some of you are going who had the surgery in the last two years. How is everyone progressing? What is the best advice you would give someone pre surgery and post surgery?

Look forward to hearing from everyone… Helen

“My name is Lisa and I live in Dallas, TX. I am having the lymph node transfer at the end of the month at MD Anderson with Dr. Alexander Nguyen.

How are you doing since your surgery? Are you still feeling good about your surgery? Is there anything you wish you would have done before or after the surgery that you didn’t?

Just a little background. I had cervical cancer in 2002. Had a hysterectomy but no radiation or chemo thank goodness. I developed lymphedema though in my left leg in 2008.

In 2013, I had the lymphatic venous bypass surgery at MD Anderson with Dr. Roman Skoracki and was pleased with the results but wanted more! Dr. Skoracki has since left MD Anderson to head up the lymphedema program at the Ohio State University hospital. I loved Dr. Skoracki and highly recommend him to anyone in that area…in case want to put him in your blog. I was originally scheduled with Dr. Chang but he moved to Chicago right before my surgery.

Now I’m with Dr. Nguyen and I really like him as well and am scheduled for the transfer on 9/29. At my last check up in April of this year, I told Dr. N I wanted to try more of the bypass surgery. He told me I would get the best results with the lymph node transfer. Actually, Dr. Chang, Dr. Skoracki and Dr. Nguyen have all told me I would get the best results with the transfer but I was to chicken the first time 🙂 So I have decided to go for it but I’m nervous, scared and excited and hopeful all at the same time.

Dr. Nguyen is taking the lymph node from my stomach and either transplanting at the groin or calf, depending on where I need it. I will have a drain for several weeks. Did you have any drains? If so, anything I need to prepare for with those?

I would love to hear any suggestions and recommendations about preparing for the surgery–I’m following the blog as well.” Lisa


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Cindy.. 8 months post surgery with Dr Granzow

imageThis is a new update from Cindy after her surgery with Dr Granzow in December 2014. Always great to hear of people’s progress as this is a very slow process waiting to see results!! Any changes are good changes and give hope to others.


“Just got back from my post-op appointment with Dr. Granzow (in California). As I said, I was supposed to see him in June, but a personal loss prevented me from making that appointment. I am 8 months out from my December 2014 surgery. I feel wonderful. I am not using any nighttime compression. My right leg (the lymphedema one) is smaller in some areas than my left leg. There is no pitting. The overall volume difference between the right and left leg is 34 mil. In January 2014, the difference was over a 1000 mil. Unfortunately, around my knee area I accumulated excess fats and proteins under the skin. It is not fibrotic and it is not fluid, it’s just there. There is not enough there to warrant any type of lipo to remove it. I am still wearing my custom garment (Elvarex class 3) during the day and receiving MLD twice a week. I’ve chosen to be very conservative and let my lymphatic system really have time to heal. My plan is to cut back on MLD to once a week, then in a few weeks not wear any compression on Saturdays. As long as I have no swelling, I will maintain that for 6 or more months. Then I will go without compression on weekends. I’ve lived with lymphedema for 5 years, I am going to do everything possible to get the maximum benefit from this surgery. I sincerely believe that if I take it slow and not overwhelm my lymphatic system, I will one day be able to be out of compression more than I am in it. That is my longterm goal!

I flew for the first time in July. The plane ride was over 5 hours and I did not have any swelling (of course I was wearing my garment). Prior to the surgery, I was afraid to fly. Prior to the surgery, my leg still swelled even when wearing compression. I only started wearing a custom garment in November 2014. It was never suggested to me before. I always wore an off the shelf garment. I was led to believe custom garments were only for people who didn’t fit in off the shelf garment. False information!! I should have been in a flat knit from the very beginning. So much time is loss when you are trying to get treatment for lymphedema and that is a tragedy. Had things been addressed correctly, the fats and proteins would not have had a change to build up the way they did. Accessing MLD treatment is not always easy.

The psychological aspect of living with lymphedema is the hardest part (in my opinion). Always wondering what is going on under the skin. Praying the skin stays soft and pliable. Having to stay on top of it is exhausting. Ignoring it would be foolish.

Dr. Granzow and his staff are incredible. I know I am in very good hands. Any question I have is answered immediately. As incredible as it may sound, I am able to contact Dr. Granzow directly. My own research is what led me to Dr. Granzow. Being proactive is mandatory when you have lymphedema. Information doesn’t just come to you, you have to go out and find it yourself.” By Cindy

This is a link to Cindy’s surgery in December
Thanks so much Cindy for sharing your progress with others… Slow and steady wins the race!!! This surgery is not an instant fix and it can take a year to start to see the first signs of change and improvement. The new nodes grow very slowly so great patience is needed..

This blog does not replace advice and consultation with an experienced surgeon… Make sure to ask lots if questions and also find out about their pre and post surgery protocols…. Helen



Copyright © 2013-2015 by Helensamia. All rights Reserved.

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Research from Australia which may help those with Lymphoedema

Gene discovery points to lymphatic disease and cancer therapy

This is a link to a television program shown on Chanel 7 about the work that is being done at the University of Queensland on the lymphatics system.

These are links to three articles about the research

Wonderful to see this research happening in Australia which could benefit those with Lymphoedema and also help to stop the spread of cancer from a primary growth.. Thanks to the University of Queensland for sharing this news..


A personal account of surgery with Dr Chang

imageOne of the joys of writing this blog is bringing people together, being able to support them while they go through the process of surgery for Lymphedema, both before and after. I love getting emails and comments with questions plus news of decisions made to have a Lymph node transfer, lymphovenous bypass surgery or liposuction or a mixture of all! Two weeks ago Jeanie contacted me with news that she would be having surgery with Dr Chang the next day..( She was feeling a mix of nervousness and excitement, which is quite normal given the surgery is elective and a huge decision to make. She had also wanted to share her story to help others in the future.

Jeanie wrote before surgery…..
“I’ve been reading your blog about your experience with the Lymph node transplant. I, too, am having the surgery (my LE is right leg and basically from the waist down) on Tuesday, May 6th with Dr. Chang!! I’m so nervous, and hopeful, ….yet scared beyond belief!
I had uterine cancer in december 1999 and the lymphedema started about 5 years later. I have done everything. Everything!
I hope you get this message – I just found your Facebook page….
Thank you for your informative sites and pioneering soul!!”

“I am so happy that I was able to connect with you. You have been such a pioneer – and I am so grateful for your experience and your wonderful way of putting ‘words’ to all the complex emotions that go with lymphedema and now the lymph node transplant decisions. I am feeling very very nervous…and a little excited about the surgery. Dr. Chang is taking the lymph nodes from the neck area on my left side. I don’t know how many places they put the nodes into my leg. I will find that out this morning, I think. I believe he mentioned 6 or 7 areas?…..I’m not quite sure of that right now. He’s also doing a lymphovenous bypass at the same time.( said the surgery can take 7-9 hours. That part probably makes me the most nervous! I’m a little scared of anaesthesia for that long. ….So, all prayers are most appreciated! 🙂

I would love to put my information on your blog. Please feel free to add any of my I formation if you think it could be helpful to anyone else. The decision of whether to do the LNT or not was difficult, but ultimately I decided to pursue the surgery when the reality of my leg continually getting worse was harder to face than the surgery. The entire right side (waist and abdomen) has started to get larger over the past couple years. My right side is approximately 1-3 inches larger than my left gets worse at the top of my leg. …And I have been the most compliant wrapper, daily compression wearer and in the last 6 months – pump user! I have mixed emotions about the pump, but from what I understood, insurance is more likely to help out, if they feel we have gone through all the proper – insurance recognised – channels. I have been told that my insurance will pay half. I have received pre-approval, so I am hopeful they will come through for me. Insurance is always one of the most anxiety riddled areas for new technology…so, cross your fingers! I have blue cross/blue shield of Minnesota.”

Jeanie wrote two weeks post surgery….
“Thank you for touching base! It has been two weeks (yesterday) since my surgery. My stitches are still in and there is still a little discomfort at the incision sites, but over all – the pain isn’t too bad.

I think I can see a little difference in the lower part of my leg. Dr Chang did two Lymphovenous bypass surgeries in my lower calf and the transplant/transfer from my neck to the groin on my right side. They took the nodes from my neck, so I’ve got a 6-7 inch scar on my neck and at my groin! Adorable – not! The bypass areas each have about a two inch scar with stitches.

I can’t remember what it’s like from others who have had this procedure….but, after 2 weeks, I have to admit, at times I wonder if all the discomfort and inconvenience is worth it. I think it is….and I do know that all the results won’t be available until a year from now…….maybe longer. So,I have to remind myself to be patient. I am supposed to keep my leg elevated as much as possible (70-90%of the time) for the first 4 weeks…..And for the next couple weeks after that, just minimal activity….i.e. light walking and golf….no strenuous activity i.e. No swimming until at least 8 weeks out. Im trying to stay immobile and give the lymph nodes a gentle, non-gravity bearing environment to establish themselves. 🙂 ….even though I’m getting bored, I try to stay positive that this is the first stage of the journey.

Also, there is such interesting research occurring right now, with lymphactin….I think the future looks better and better. I would have loved to be able to have the lymphactin with the transfer….but, it isn’t approved for the U.S. yet. It is currently in clinical human trials. Do you know anyone who has had lymphactin with the transfer?

At this time I only have a little pain at my neck incision and at the area below the groin incision.
Thanks for staying in touch!!
If you hear anything new in the world of research (especially with lymphactin with patients who’ve had a transfer) …..please let me know.” Jeanie

Thank you so much Jeanie for sharing the start of your journey after a LNT and Lymphovenous bypass. These surgeries are so new but no one need be alone and there are now others to ask questions of .. One thing for sure is that it brings a roller coaster of emotions along the way!!! Plus much patience is needed for results… I hope that you will allow us to follow your progress over the next few months and years as it does so help those who follow behind!! Thank you so much..

If any one would like to contact me my email is


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

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News from Jennifer … March 2014

Jennifer is the “oldest” lymph Node Transfer on this blog. By oldest I mean the longest time since her original LNT!!! Nearly 3 years…. I think I fit into the oldest age wise!! Jennifer has once again taken the time to update us on the progress of her second Vascularised Lymph Node Transfer, (VLNT) to give this procedure its full name, and to let us know her progress. I will put some links at the end of this article so you can catch up with Jennifer’s previous story and progress after her first LNT.. Thanks Jennifer for sharing as always. It helps others so much to read of your experience and you have been a great help to me  when I doubted that the surgery had worked!!! You always said it would be ok!


Post surgery.. Picture provided by Jennifer


A few weeks after surgery .. Picture provided by Jennifer

“On March 13th 2014 I had a follow-up appointment for my 2nd VLNT surgery in New York. I saw Drs. J. Vasile and C.Becker. The 13th of March was exactly 24 years since my original surgery when lymph nodes were removed as a precaution for spreading cancer cells. None was found in the nodes at the time. I would develop lymphedema 10 years later, slowly progressing with tissue slowly becoming fibrotic.
The visit went very well, and the doctors seemed pleased with the progress I have made. Both Drs. Becker and Vasile agreed that my leg looked really good. I told them I was having a good day lymphedema wise. The incision site looked well healed, though still a red line visible, but will turn white and nearly invisible.
Dr. Becker said she thinks the new nodes are doing their job. I won’t know for sure until I get an MRI which will be scheduled in 3 months. (I will have anxiety about ‘ruining my VLNT’ until I get confirmation that they are healthy and working hard.)
Dr. Becker gave me some great hope, though I’m cautiously optimistic. She felt like I would be ‘normal’ within a year. I specifically asked what she meant by normal, having read and heard her say that about other patients. Last year she told me this as well. She thinks that I will be able to dispense of stockings. But….still need them when flying, standing or sitting too long. But, she thinks that I’ve made a lot of progress, especially when comparing to the first visit. There has been a real reduction, and I think they said 4 cm.
I had my first lymph node transfer in May of 2011, and now my second one on December 5, 2013.
I was not nearly as nervous as I was for the first lymph node transfer when I was scared witless because though I had read plenty about it, and I had spoken to only 1 person who had had it done, I didn’t feel satisfied that I was making the right decision. I was uncertain of the outcome, and my biggest fear then was that I might make an already bad situation worse.
Generally, my regular doctors (not the micro surgeon specialists) had no idea about VLNT and always cautioned me against doing anything ‘foolish’ and/or unproven.
The decision to have a second transfer was to help the congestion in my calf area. And, it was decided that I would have the nodes taken from the right side thorax area and placed just above the knee on the interior of the leg.
I was also going to have some ‘mini’ lipo suction done on my right upper thigh to remove some excess fat that had accumulated as a result of the lymphedema, what I have affectionately referred to as my ‘brioche’ or perhaps we could call it a bagel or a croissant. It was an unsightly bulge at the top of my stocking that stuck out as though I had glued on a thick slice of doughy bread there. I was very self-conscious of the lump and it was on the rise. (Do you like the bread puns?) So, the good surgeons took a very thin slice off, and smoothed it to look similar to the left side. They were very conservative in how much they removed. Though, in my opinion, there was plenty to take, they were very cautious, which I appreciated.
The first week after VLNT was very unpleasant, as I was coming off of all of the drugs pumped into me, and having to take pain meds that make me loopy. I had a lot of pain under my arm where the nodes were taken. This was to be expected since they had to cut into the muscle and stretch open the incision, disturbing and stretching out the nerves. For the first week, it was a burning sensation as though someone had placed a hot iron on your shoulder-blade and forgotten about it. But, that subsided and I was left with numbness. This is an unsettling feeling, though after several months it becomes less and less and eventually as the feeling returns, very gradually, you forget all about it.
I couldn’t wear my usual thigh high compression stockings for 30 days, only the knee highs. The swelling around my knee and above my knee was huge. In contrast, my calf looked great, in fact there was no swelling there at all in that time period. The difference in measurement was an additional  8 cm at the thigh after surgery, which is a lot for me.
I fell into a depression looking at my very swollen limb, and I went through a period of regret. I was scared actually. I thought, what have I done!
I found a wonderful lymphedema therapist. She has primary lymphedema herself. I started seeing her a week after surgery, while my drain was still in. The drain in my thorax had to stay in for 2 weeks. It’s great fun to have to pin the drains to your clothing and even more fun when taking a shower.
I was given the all clear to start wearing my regular compression stockings after 30 days. I also was allowed to use the pool. So, I started swimming, very gently at first, and slowly building up my strength. After 2 months the swelling had subsided quite a bit and now 3 months later, the swelling is nearly all gone. I am still a little more swollen at the knee, and I have light numbness all around the knee and upper calf area.
I have to say that I have absolutely no regret now of having the lymph node transfers. I feel sometimes like I have won the lottery! When I left the Doctors office I felt like a million bucks, and Dr. Becker has a way of making you feel that way about yourself!
I also want to say a great big gynormous thank you to Helen for her fantastic blog. Without the blog I would not have met so many extraordinary and courageous women with whom I have been able to share so much. We feel so much less alone and so much more empowered.” By Jennifer.. Thank you so much.

Below are some links so you can follow Jennifer’s story..


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

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Great News.. Lymph Node Transfer going well!!


This time a year ago I was preparing for my Lymph node Transfer or as I called it “My Lymph Node Transplant”… March 14th 2013 was surgery day. Things did not run as smoothly as I had hoped, after nearly nine hours of surgery I returned to my room, bloated all over, in pain and very uncomfortable, ready to fight all the staff due to the effects of anaesthetic!! Tubes out of everywhere, drains in the surgery sites and still nil by mouth till the next morning, so I could go back to surgery if there was no blood supply to the transferred tissue!!! My daughter wrote about this long day while my family and friends waited for news in the post called “The Big Day” . These are such clear memories for me. I remember laying there thinking, What have I done to myself? Why was I so crazy as to put myself through this? I am all swollen up I have made my Lymphoedema worse!! all these thoughts were buzzing round my head. Then on the second day my temperature went up and the area round the newly implanted nodes was red and hot, cellulitis had hit!!! This was very scary as the infection could destroy the transferred tissue and enclosed nodes. There followed a two-week stay in hospital on IV antibiotics and when I was allowed home another month of oral antibiotics. Three months after my surgery I had an ultrasound to see if any nodes had survived the infection. I was so thrilled when it showed one and maybe a second one… Phewwwww!! It was difficult for the technicians to see as there was still a lot of surgical swelling.

Then we come to today, as this is nearly one year post surgery, I was due another ultrasound. I had felt there was some improvement in my lower leg but I have lost all perspective as to what my leg was like. I thought maybe I was just imagining changes!! I am always anxious before any scans or tests and these are no different, especially when this was elective surgery and if there are no nodes then it would all be for nothing. The technician was quite serious and said, “Do you know this is experimental surgery?” I thought oh no he is preparing me for bad news, then his face lit up and he said, “There is one and there is a second and maybe that could be a third.” He did look quite amazed and me I wanted to burst in to tears I was so relieved and happy!! This year has been such an emotional roller coaster it was good to have positive news.

My Lymph Node Transfer / Transplant is on track. The nodes will continue to grow and create new Lymphatic vessels. It is just so very exciting that this new surgery will shine a light at the end of the tunnel for everyone with Lymphoedema. The more surgery and more experience these surgeons have the better this will become. Thanks Dr Quan Ngo for allowing me this opportunity and to Macquarie University Hospital for allowing me to be part of their research. I see Quan next week and will have measures done and an L-Dex reading as part of the research program. At 18 months and 2 year I will have more measures and scans to check progress.. It is a slow process but this is heading in the right direction!!

I would also like to thank EVERYONE who has and is supporting me, my friends and family. To Jennifer who had her Transfer done over a year ahead of me, she has been my guiding light each step of the way. Jennifer was able to tell me what to expect, when I got dishearten she would say, ” Just wait it will be ok!!” To all my friends who have Lymphoedema, you are the people I talk to and you really understand where I am coming from!! To those who have had surgery after me, “Yeh  it works!” To my Husband for putting up with some major mood swings over the past year, a big hug to you. ❤❤ To everyone who reads my blog and has helped it to grow and become something very special to me..


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

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Lymph Node Transfer after Breast Cancer Treatment..

logoJust sharing with you this comment that was posted on my blog… Comments can get a bit lost especially if they are on an older item, however I felt this was important to share.. This is a lady’s experience of surgery after Breast Cancer to help her Lymphedema… Thank you for sharing this with us…. An Experience of Lymph node transfer and Lymphatic Bypass for Lymphedema of the arm.

I was diagnosed with breast cancer (left) in Nov. 2008. Soon, a lumpectomy followed (sentinels: 2pos./2neg), so 3 weeks later a pre-cautionary auxiliary dissection surgery was performed. Ever since mid-January 2009, I have been suffering from severe lymphedema (stage3) on my left arm. Chemo followed, radiation (May-July) didn’t make it better either. I tried everything “Under the Sun”, all types of treatment, but none of these could provide me with any satisfying relief, except “Jovi” sleeve. This was the only garment I could apply and it would at least keep the arm from harding out and advanced fibrosis. Day-use compressions made it way worse, especially around the lower arm and back of the hand (“Popeye”-effect). Every night, the heavily padded JOVI sleeve returned some or most of the fluids, but even after 5 years of religious use, it became clear the progress of the decease will creep up year after year. Its only a matter of time that a tiny injury might cause blood poisoning. BTW, my insurance declined “Flexi Pump” as too experimental, which hit me very hard! I totally agree with Christine’s and your report what an enormous and constant emotional drain this condition is (FYI, the insurance accepted to carry the Reconstruction Surgery!).

Already in January 2009, I found and signed up for the Lymphatic Research Foundation (recently changed it’s name:, which is an online forum and newsletter. Last June, the LRF held an online symposium containing extremely informative and encouraging videos about new surgeries Dr. Chang has been developing and was performing in Houston/TX.

As I’m writing this comment here in a Chicago hotel room, I’m literally just recovering from my Lymph Node Transplant and Lymphatic Bypass surgery he performed last Friday (12/13) after noon. After a 6 1/5 hrs surgery, I spent 3 days as an inpatient. Since I’ve flown in from Seattle for Dr. Chang’s surgery, my husband and I “relocated” to a hotel last afternoon (never mind, drains still attached). What I’m trying to say is, being from out-of-town is fairly easy to handle here.
I’m feeling and doing very well, every now and then, tears of relief and joy float up, but I certainly will happily wear my scars from any part of this life- and mind-altering and reconstructive, surgery. I feel I am a warrior who will wear this neck scar like a diamond necklace!

So, please anyone, keep building on this blog’s very helpful information. BTW, although most patients impacted by lymphedema are woman, it’s not gender specific: men can get it too, i.e. while receiving Prostate Cancer treatment.
Tomorrow, I might be able to report about my first post-op visit.

Thank you for allowing me to create a post out of this and I look forward to further updates as you rest and heal… Helen


The first step in the road less travelled

Lymphedema: Estimating the Risk for Patients with Breast Cancer

This maybe of interest to those of you treated for breast cancer and who have had lymph nodes removed .. ..thanks Dr Michael Hunter for this…


The development of breast cancer-related lymphedema is tied closely to how many nodes are removed by surgery. Radiation therapy and chemotherapy can also increase risk. A recent study from Korea (published in (check out the length of the this name!) International Journal of Radiation Oncology Biology Physics, 2013) attempted to estimate the risk of lympededema based on combinations of these treatment factors.

The Study: The authors looked at 772 patients with breast cancer. All had primary surgery with axillary node dissection from 2004 to 2009. The study looked back at these patients (retrospective analysis). Adjuvant chemotherapy was given to 677 patients. Of the 675 who got radiation therapy, 35% had a component directed at the nodes above the collarbone (supraclavicular nodes).

Results: Half of patients were followed beyond 5.1 years. The 5 year cumulative chance of getting edema was 17%. Of these 76% developed it in the first 2 years…

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