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!!

image

image

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

An update from Jeanie.. LNT with Dr Chang

imageThis is a link to Jeanie’s post on her surgery with Dr Chang which was in May this year.
https://lymphnodetransplant.wordpress.com/2014/05/22/a-personal-account-of-surgery-with-dr-chang/

Via a comment on this blog Jeanie has written about her latest news, but I thought I would create a post out of it so you could all read it. Love to hear of people’s progress post surgery as this helps others. It is also a way of finding out about various doctors for surgery or therapy.

“Hi Helen! It has been 4 1/2 months since my surgery. I am feeling great and have started exercising and building my strength and stamina back. My initial impressions are favorable about having this surgery – for any people considering whether it is worth it or not. I recently met with Dr. Hutchinson, a lymphedema specialist in Minneapolis. I had never heard of her, and here she was, geographically close to me, considering I have travelled to San Francisco, Chicago, and Santa Monica, to find the most Informed researchers in lymphedema! She is helping me with the next step of physical therapy and will be my ‘go-to’ person for all further decisions related to additional surgeries, etc. (she has been – and maybe still is – on the Board for the national lymphedema network.) Her personal opinion is that Dr. Granzow, in Santa Monica has a more preferred approach to the surgeries involved with reducing and managing lymphedema. I was a little disappointed to hear that as I had obviously chosen to go with the LNT and bypass approach first, …vs the lymphatic liposuction direction first, followed by the LNT. But, as she said, no harm done, and we will now continue to manage the outcome of the surgery to help get the best results. The best news is that my leg is not getting worse! I can see small improvements in my lower leg, and with exercise and a healthy diet, I do see more positive results in my entire leg. Ironically, if I have too any extra sugar or salt, my leg seems to instantly retain fluids …. 8] ….seriously! it feels instantaneous. S, again the good news, is that my keg is not getting worse. There are small improvements…and I remain hopeful for better results in the future! So excited to see the news on lymfactin….I would so love to be a part of that study! Thank you again for all you do to keep the information flowing to all of us out here who are pioneers in the world of lymphedema surgeries! Many hugs!”

Thanks Jeanie for this latest update and glad you are going well. This is a slow process and we do need lots of patience to see real results. It really helps to have the support of others who are going through the same process as it is sometimes difficult to find the information that you need. If anyone would like to share their  experience of living with Lymphedema please leave a comment and I will get in touch with you… By sharing we help each other.. Helen

image

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

Lymphoedema Awareness Week

Support the awareness campaign in the UK… Wear your odd socks and donate.. Thanks Lauren for this… As always an inspiration 😃😃

LymphFashion Lymphoedema

Hey Beautifuls!

This week in the UK has been Lymphoedema Awareness Week. Lymphoedema gets less press than it deserves. It’s also more common than people realise. There are at least 240,000 sufferers in the UK and around 6 million in the USA. The condition has been ignored by medical professionals for so long. NOW IS THE TIME FOR CHANGE! We will be ignored no longer.

The Lymphoedema Support Network (LSN) are taking a stand! They have started a social media campaign- ‘Sock it to Lymphoedema’. The aim is to donate as much to charity as possible through wearing odd socks for a day and nominating someone else to do the same.

Many of us have already taken part. SO SHOULD YOU! Follow these 3 steps:

1.Take a picture of yourself wearing odd socks, upload it to social media

2. Text 70070  with the code LSNS14 followed by an amount of…

View original post 47 more words

Invisible illness … Lymphedema

This week has been Invisible Illness week. I thought that many with Lymphedema would fall into this category. Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts,loose trousers or long sleeves and a big smile on our faces, hiding the effort it took to look this good!! There are also many with Lymphedema who experience pain and when cellulitis hits this can impact our plans and social engagements.. Those with Invisible Illnesses often do not get the support or understanding they need. We all need to speak out and share our stories to bring understanding to this little known illness.. Lets make lymphedema less invisible. #Lymphedema

IMG_0069.JPG

The SCAR Project… Breast Cancer is not Pink!

image

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/

image

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’s Invisible Illness Awareness Week!

Thanks for this i am renlogging as many live with an invisible illness Including Lymphedema.

Heart Sisters

Dearest heart sisters,

If you live with an invisible illness (as almost all heart patients do), this is your week, no matter what your diagnosis.  I encourage you to visit the Invisible Illness Week site, all about those of us living with serious health conditions that nobody else can see. It’s an annual educational campaign about how often illness is utterly invisible to others, how to be sensitive to those living with these challenges, and how to learn from their unique experiences.

View original post 257 more words

Lipedema Center opens September 2, 2014 at Mount Sinai Beth Israel, Friedman Center for Lymphedema Research & Treatment in New York City

Reblogging this as great news for those with lipedema and lymphedema living in the US… No more need to travel to Europe for the lymph sparing liposuction..

Lipedema Simplified BLOG

Drs Stutz & Smith Dr Josef Stutz & Dr Mark Smith – Germany March 2014

Dr. Mark Smith, Chief of Plastic Surgery at Mount Sinai Beth Israel in New York City opens the Lipedema Center, a part of the Friedman Center for Lymphedema Research & Treatment, offering medically reconstructive lymph sparing liposuction for lipedema on September 2, 2014. Dr. Josef Stutz, one of the top expert surgeons in lipedema from Germany, is visiting and assisting in bringing this treatment to the USA.

Dr. Smith is also Director of the newly established Gerald J. and Dorothy R. Friedman Center for Lymphedema Research & Treatment. In addition to treatment, the Center focuses on research in the areas of lymphedema, lipedema and the underlying fat metabolism that effects both conditions.

Dr. Smith has received numerous Patients’ Choice Awards, been included in Castle Connolly’s list of Top Doctors in Plastic Surgery and New York Magazine’s Best Doctors List…

View original post 22 more words