Lymphedema… The unwelcome guest that never leaves!!

imageHaving cancer and going through surgery, chemo and radiation takes its toll but the hope is that after all this life can move on. Imagine however that an unwelcome guest appears after all this, lymphedema. Lymphedema is that dreaded side effect of cancer treatment that remains as a constant reminder of what you have been through. For some people the cancer may return and treatment continues, for them Lymphedema is an added burden that requires their attention 24/7 along with on going treatment. Lymphedema if ignored will flare up and cause even bigger problems such as pain and infection. It effects self-image and impacts on ones quality of life it is also an added financial burden. Lymphedema is the unwelcome guest, post cancer, that never leaves. However we must never forget that some are born with lymphedema which impacts their entire life. However in this story the focus is on lymphedema as a side effect if cancer treatment. Loretta tells us of her experience with Lymphedema after treatment for Ovarian Cancer.

image

This is Part 1 of Loretta’s story
“I was diagnosed with Ovarian cancer in March of 2011. I had gone in January to my Gynaecologist for my regular Pap Smear, I received a call to come back as it was irregular. I went back in February and the test was redone this time the results were normal. My Gyn Dr. Daria Klachko said to me she would like to do a cervical and uterine biopsy. That was done sometime in February and that too came back normal. She then told me she wanted me to go for an ultrasound, that was done in March and unfortunately that showed a mass the size of an egg on one of my ovaries. I then went for a CT scan which confirmed the results of the ultrasound. At that point Dr. Klachko referred me to a friend Dr. Mario Leitao who is a gynaecological oncologist at Sloane Kettering hospital in NY. He confirmed by worst nightmare, I had Ovarian Cancer. While we were arranging surgery I said, “please don’t let me get Lymphedema.” I was familiar with Lymphedema, as my older sister had it also from a gynaecological cancer surgery, however I did not at that time appreciate her struggle with it. In June, when I went back to Dr. Leitao, I found out I was indeed very lucky, I had stage 1A clear cell, although clear cell is very aggressive none of the 26 lymph nodes he removed showed any sign of cancer. I had a mix of feelings at this stage, relief that my cancer was caught early and was not in the nodes but some anger too that 26 nodes were removed as I was already having some signs of lymphedema. I told him I was getting some swelling in my left thigh but he attributed it to post op swelling. When I finished with my chemo the swelling was more pronounced and I was diagnosed with Lymphedema. During this time I also had genetic testing done, I tested positive for the BRACA mutation. This was done at Sloane Kettering, they told me that since both my sister’s had cancer and my late father that they had the gene mutation too.

My LE fortunately was very mild at this stage. I was fitted with a 15-20 compression stocking in January of 2012 and went for MLD on a regular basis. I decided not to go to Sloane Kettering for MLD I found a place nearby in New Jersey and a Dr. who was supposed to be a lymphedema specialist.

My husband and I decided to take a trip to France in June, unfortunately we didn’t get a direct flight and by the time I got to Paris my left leg and foot were very swollen. I was frantic, to be away from home and trying to deal with an ever-swelling leg, my low compression stockings were no help at all. I bought new sneakers and tried to elevate and rest as much as I could but I was in Paris!! Then a river cruise on the Rhone, so how much could I elevate? It was at this stage I started to realise the true effects of lymphedema. When I came back I went to the Dr. in NJ and showed her the swelling, which by that time was out of control, the only thing that helped was staying in bed off of my feet. We upped the compression but still nothing helped. This was a miserable and worrying time being unable to control the Lymphedema and the impact it was having on my life. It was at this point I called my surgeon and asked if he could get me into The Sloane Kettering Lymphedema program. At Sloane Kettering I was bandaged but didn’t do well with the compression. The first night I felt like my foot was on fire but kept the bandages on until the next day, when I took them off I had sores behind my toes. Needless to say I didn’t bandage again. However I tried a ready wrap and that worked. At this point I was hoping to find some other help for my Lymphedema as I was having such difficulty controlling it.” Loretta

Thanks Loretta for sharing with us how your lymphedema started in the second part we will hear about Lorreta’s Lymph Node Transfer and her time in hospital… Remember March is Lymphedema Awareness Month and by telling our stories we allow people to understand the impact of Lymphedema on our lives.
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

2 thoughts on “Lymphedema… The unwelcome guest that never leaves!!

  1. Thanks for sharing Loretta! When lymph nodes are removed I do not think they should be so quick to say post-op swelling!! I was told the same thing. Our situations are direct opposites. You get a test with normal results but your doctor feels the need to investigate further. Thank goodness they did!!!!! In my case I get a D&C positive for grade 1 endometrial cancer and no further tests are done. I have a radical hysterectomy (21 lymph nodes removed) that found no malignancy (glad there was no cancer), but wished they confirmed the D&C results with further testing. Here we are today both battling LE. You and I talk often and I am thankful for that. Look forward to part 2.
    As always, many thanks to Helen for giving us this format. 💕

    • What you have been through and what you are still going through is just so sad when there was no cancer.. As you say. Miracle that Lorettas Dr felt there was something wrong and kept looking … Two different ends of the medical profession .. I wish they would start to do something like the sentinel node checks that they do for BC so not all nodes have to be removed for Gynaecological cancers.. Maybe then there would be less Lymphedema caused .. Thank you ladies for sharing and being part of this LE community.. 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s