Leg lymphedema in cancer patients

[mudmucker]

I am trying to understand lymphedema in the legs a little more and how it may impact a person who's life revolves around cycling.


Just before Thanksgiving I was diagnosed with uterine cancer. The surgery date is set and I will be having a full hysterectomy. They will also be taking lymph nodes in the groin area. They cannot stage the cancer until after surgery when they will do the pathology on what was removed. Until then, I do not know if I will require chemo or radiation treatment.

Obviously, my first concern is surviving. But following whatever is to happen, I am very concerned with the possibility of acquiring leg lymphedema due to the removal of the lymph nodes. This condition can't be cured, it can only be managed. Now it is not certain that this will happen to me. I have tried many searches; they typcially state generically, "lymphedema may occur in some cancer patients". Then, many of the articles focus on breast cancer patients and lymphedema that occurs in the arms. And also, most information seems to focus on managing lymphedema if you have it and there are discussion forums on this.

I don't know the finer details as to prevention or percentage of occurance. As I understand, if it doesn't happen after surgery, then it can remain as a latent condition that could possibly be triggered by certain activities.

So now to my questions.

1. What is less clear to me is the preventative aspect of this. I've read where exercise can be helpful. I am fit, thin, and toned (doctor's words). People say this is a benefit overall, but if your lymph nodes are gone your lymphatic system is compromised and it doesn't matter your fitness level. Some exercise may not be helpful.

Basically they say it's a balance between how much lymphatic fluid one removes as it accumulates. Like nutrition on the bike in reverse - we all need to manage that. Will cycling as I know it end? This past season was one of my best seasons. I was riding hard and fast in pacelines and having the time of my life. I like climbing challenging hills. I like to stand and sprint up shorter steep inclines. Will I not be able to ride like this anymore for fear it is too much for my body to handle? I just haven't found much discussion as it relates to athletic activities.

Can anyone offer any personal experience as it pertains to cycling or running?

2. I've just got a new mt bike this fall. I've read where cuts or bruises might trigger the lymphedema. To what extreme does this mean? Will I not be able to ride my mt bike for fear of falling or scraping a leg with threats of infection?

3. Can anyone offer insight as to the likelyhood of lymphedema in the legs occuring at all? I'm just wondering what level of cycling exertion I can expect to do. Am I overly-concerned about something that isn't so much of an issue? I will certainly accept any level of cycling I can do. It just may never be what I did

4. I now belong to the Dana Farber club. I truly feel like I'm with the A team on this one. I have some more pre-op appointments. I have a number to call the physicians assistant with questions before surgery. I will use their support services. The doctor said this might occur but didn't elaborate much more than that. And I didn't know enough to ask then, well, because I was a little pre-occupied with the more serious points of the discussion.

I am trying to get as much information as I can before I call the physician's assistant. This just may be a matter of wait and see and feeling my way through how my body will process. I welcome any comments or experiences regarding leg lymphedema in cancer patients and cycling/running.

[KnottedYet]

First, my good wishes to you during all this.

Second: I worked in a lymphedema clinic for a year. Lymphedema is absolutely manageable. In atheletes, even more so.

I'll try to answer your questions in order but if you want to PM me for more discussion, please do. I love hearing myself talk... (or type, as the case may be )

1. Ask your doc if you should learn manual lymphatic drainage patterns and start doing them now to help your body build extra ducts. While the deeper lymph "veins" that go via the nodes may be rendered unusable from surgery, the smaller surface ducts can be encouraged to proliferate to help re-route lymph around the damaged area. They would never be able to handle all the lymph on their own, but with continued manual drainage (light strokes on the skin in certain patterns that follow the lymphatic paths) twice a day, they can handle quite a bit.

Ask your doc about wearing a compression stocking or tights during riding. Compression itself may not help in prevention. Having the tights or stockings on during riding may protect you from cuts, scratches, bug bites and sunburn that could lead to infection which might trigger lymphedema.

Make a habit now of inspecting the skin of your legs and feet every night for scratches and bites. They wouldn't cause any problem to you before surgery, but developing the habit beforehand is a good idea.

Infection isn't the only trigger, sometimes no-one knows what the trigger is. But it's an easy one to monitor yourself for.

2. If you protect yourself from skin breaks and if you have a habit of inspecting your skin and monitoring the healing of skin breaks, you should be fine as far as cuts are concerned. We never told anyone to curtail their activities, unless they had plans to get a tattoo on the effected limb. A tattoo is right out. Your doc should be able to tell you what antibiotic ointment (if any) they prefer you use for any skin breaks that do occur. Don't panic if you get a cut, just watch it to make sure it heals correctly and call the doc immediately if it shows any signs of infection.

3. Lymphedema does occur in the legs. Less often than in arms, I think because the legs do a lot more moving and strong muscles contractions. Movement is what makes lymph circulate. The lymphatic system doesn't have its own pump, it's kind of a parasite on the muscular system. It depends on skin drag to collect fluid and move it through surface ducts, and muscle contractions to pump it through the larger deeper ducts, and joint movement to squeeze lymph through the nodes. (that's why nodes tend to be at the inside of joints) This is why we push athletic activities on lymphedema patients. More movement means better circulation.

For an example of the opposite, look at someone who's had a stroke. They often develop edema in the arm on the stroke side. There is nothing wrong at all with their lymph system, but since the muscles aren't working there is nothing powering the lymph system and the fluid just accumulates.

The calf muscle is sometimes called the "second heart." (especially the soleus) Strong contractions of the calf assist venous and lymphatic return. (and we want to assist venous return because the lymph dumps into the veins) Biking and running involve some darn good calf contractions! After the nodes in your groin are gone you may have a road block at the groin, but there are ways to deal with that. One of your goals will be to prevent accumulation of fluid from happening in the first place as much as possible, so exercise is your friend.

4. Can I suggest you get a 3-ring binder with those tabbed divider sheets? Put a little single sheet 3-hole punch in there, too. Make a section for each topic and keep your notes together. Punch holes in any handouts you get from the doc and put them in, too. Keep a sheet at the front of each section for your questions on each topic. Take the binder with you to every appointment, and write down the answers to each of your questions. It's even better if you can get someone else to take notes at your appointments so you can focus on the appointment itself.

[OakLeaf]

((((((((mudmucker)))))))) Keeping you in my thoughts and prayers.

[azfiddle]

Hang in there- all the best to you in getting through the sequence of treatments and coming back full strength.

[Selkie]

Sending you lots of good karma and hugs.

[redrhodie]

(((mudmucker))) I'm so sorry. Sending healing thoughts your way.