I have spent so much time the last few years researching, travelling, working in Clinics and doing all that I can to learn more about Lymphedema and Cancer in order to help others that might not have the strength. One thing gets me upset though, I had Cervical Cancer (my PAP tests were always ok) a Wertheim OP, a radical lymph node dissection (lymph nodes positive), Radiation treatment and Afterloading. I have lots of information, studies, help etc. for the Breast Cancer Patients but I can hardly find anything, in any Country about us. Why? I am very happy that so much has been done for the awareness and education for Breast Cancer survivors, I was not prepared to what would happen with my body.
Even special Lymphatic Clinics are not aware about what happens after these operations, they say then it CAN only be in your legs, which is not true. I was very happy to find:
http://www.tracywalton.com/downloads/Walton-Cancer-and-MT-Part-II-Fall-06-MTJ.pdf
Thanks Tracy.
Even the Cancer Society’s hardly mention the impact. This is not only affecting women but also the men with Prostate Cancer just for example. I was also happy to find this: A thank-you also for your good work and questioning.
Lymphedema in Gynecologic Cancer Survivors: An Area for Exploration?
Lockwood-Rayermann, Suzy PhD, RN
http://journals.lww.com/cancernursingonline/Abstract/2007/07000/Lymphedema_in_Gynecologic_Cancer_Survivors__An.15.aspx
Abstract
There is a paucity of research on the incidence and impact of lower body lymphedema in the gynecologic cancer population. The cornerstone of management for gynecologic cancer is cytoreductive surgery. Depending on the site of the cancer, surgery traditionally involves removal of the ovaries, fallopian tubes, uterus and cervix, accompanied with extensive node dissection throughout the pelvic cavity, and, in the case of ovarian cancer, removal of the omentum. Resection of pelvic lymph nodes and vessels, compounded by gravitational influences on lymphatic flow, can lead to lymphatic congestion that impairs mobility, raises intra-abdominal pressure, and increases abdominal and extremity girth. Lymphedema can be an indicator of recurrence and is frequently associated with toxicities such as skin breakdown, pain, neuropathy, and myopathy. Physical changes, role changes, and psychosocial issues are common symptoms reported by breast cancer survivors with lymphedema. Assessment and management strategies for upper extremity lymphedema following treatment of breast cancer cannot be directly transferred to lower extremity lymphedema affecting women with cancer of the ovary, cervix, uterus, and vulva because of limb size, volume, and location. Clinicians have anecdotally reported the presence of lower body lymphedema in many gynecologic cancer patients. Survivors have described tightness, swelling, and heaviness. Despite these clinical findings, no systematic study of lower body lymphedema in women with gynecologic cancer has been conducted. Whether lower body lymphedema is as debilitating and long-term as post-mastectomy lymphedema is not empirically known.
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Vor ein paar Jahre bin ich an Krebs erkrankt, bedingt durch meine Wertheim OP, Bestrahlung und Afterloading habe ich Lymphödeme bekommen, für mich sehr überraschend da ein paar Jahre dazwischen lagen, ich wusste das etwas nicht stimmt aber leider konnten unzählige Ärzte nicht helfen. Hier ist es auch so, wie in viele viele andere Länder auch, dass Lymphatische Erkrankungen erstens nicht wirklich ernst genommen werden und zweitens das kaum ein Arzt darüber Bescheid weiß, wie den auch, wenn in den Lehrbüchern so gut wie NICHTS steht.
Mein Bestreben ist alles zu tun was in meiner Macht steht um dafür zu sorgen das jeder der betroffen ist weiß was er/ sie tun kann um sein Leben wieder so gestalten zu können wie er/sie das möchte. . Ich suche und suche immer weiter nach alternativ Möglichkeiten um meinen Leben so normal wie möglich zu gestalten. Die Empfehlungen die ich gebe sind bei mir durchaus wirksam und ich erziele gute Erfolge und behalte meine Lebensqualität. Mein Blog ist kein Ersatz für eine Ärztliche Betreuung und ich empfehle jeden mit seinem Arzt über Therapie Möglichkeiten etc. zu sprechen. Ich kann nur anregen und durch meine eigene, persönliche Erfahrung eventuell einen weg aufzeigen.
Seit 2009 beschäftige ich mich weit über das übliche hinaus mit Lymphödeme. Nicht nur die „Diagnose“ interessiert mich, sondern ebenso was für einen Effekt es hat auf unser Sozialleben und unser Selbstwertgefühl. Ich habe viel Zeit und Geld investiert in andere Länder zu reisen um alternativen kennenzulernen, ich war bei Internationale Firmen als Gast um zu sehen welche Lösungen geboten werden, habe fast jeden Lymphologischen Kongress besucht um mich weiter zu bilden und einige Projekte als Freelancer machen können. Wie ihr sieht ist das weitaus mehr als nur ein Blog, es müssen sich grundliegende Dinge verändern um uns alle das zu geben was wir verdienen, Respekt, Empathie und das Bewusstsein das wir nichts Vorübergehendes haben, sondern das dieses ein Teil unseres Lebens ist und auch bleibt.
After being diagnosed with Cancer and going through treatments, Wertheim operation, radiation therapy and afterloading I was suddenly hit by Lymphedema. Totally surprising since nobody even gave me a hint that this could happen. Running from one doctor to the other trying to find out what is wrong with me and why my body was changing so quickly, once again being in the situation of not having control of anything. This made me so angry that I started studying like crazy, I wanted to find out why we are left alone, why doctors don’t have a clue (sorry, most doctors) about Lymphedema and the consequences in all aspects of our lives.
Sadly, I had to realize that hardly anyone knows anything about it. I started my quest to find alternatives in treatments, I traveled around the world investing my time and money, fortunate enough to spend time in companies specialized in Lymphedema treatment to learn all that I could and can. I hardly miss any Lymphatic congress, listening to the internationally known doctors, discussing what is important for us as patients. I have done some freelance work for the companies that I believe in and had the chance to work with a wonderful company in New Jersey. I have tested alternatives and I am still searching and studying because it is my quest to change things for all affected by this, not only our physical wellbeing but most importantly the impact that it has on our daily life. It’s not something that’s going to go away, it’s with us until the end and the minimum that we can expect is being taken seriously, respect and empathy for our situation and the importance for all of us that have the possibilities to change things for the better. There is so much work to do, and I am not going to give up. As you can see this is more than a blog.
If you find something interesting on Lymphfantastic but you are having problems with the German, then just send me a message and I will be happy to translate that for you, my native language is English so that is no problem. Have a great day and looking forward to hearing from you soon.
Bless you all, Monica
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