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.

[Aquila]

/comfort Mudmucker. I hope the surgery and all goes as well as it can.

And wow, KnottedYet, what a great resource you are!

[ny biker]

Try contacting livestrong.org. They have access to lots of information and resources for cancer patients. Although I don't know if anyone can provide more info than Knot!

Best of luck with the surgery, and I hope you're back on the bike soon.

[Crankin]

I am thinking of you and hoping your surgery goes well. You are right, you are on the "A" team with Dana Farber.
I was amazed that Knott could give you such a detailed answer. We are lucky to have such a resource!

[Wahine]

Knott - thank you so much. You always have great information to contribute to this forum and we are very lucky to have you as an active participant.

To add a bit to what Knott said, I have had patients with lower extremity lymphedema and it is manageable. Knott's advice is fantastic. I would second the use of compression tights during and after activity. There are also massage therapists out there with very specific training in lymphatic massage. It might be good to find someone with certification in this type of massage and develop a relationship with them. If it was me, I'd try to go for regular lymphatic massage before and after the surgery. I don't know that it will help prevent lyphmedema but it can help boost your immune response which you'll need to fight off the cancer. And finally, believe it or not, acupuncture can be very helpful.

Good health and healing vibes heading your way.

[KnottedYet]

A really good massage therapist who is certified in MLD will teach you a simplified version of the "massage" that you can do yourself twice a day.

My only caveat there is to be sure the massage therapist knows the correct pressures and patterns to use on someone who has had nodes taken out. What is often taught through massage schools is meant to be used on folks with intact systems.

To prevent or control lymphedema when the larger deeper ducts are absent or damaged you must use very very light strokes. The intact portion of the system is the surface system, whose ducts are hair thin. You don't want to pinch them shut or collapse them, or direct too much lymph toward the deeper (dead end) ducts where it will stagnate.

[mudmucker]

Wow Knott. Thank you for your detailed and thoughtful response. Yes, we are lucky to have you, and love hearing you type any time. And Wahine too. This is sounding more hopeful in terms of how beneficial the exercise is and that it can remain an integral part of my life at a level I hope to keep. I'll be happy and grateful to use my calf pump as much as I can. :) I'm encouraged that the condition seems more manageable than I thought. That bit about the self massage to encourage the surface ducts is pretty interesting and especially since I can do this on my own too. I'm going to address that right away. I need to understand the lymphatic patterns and functions a lot more but you've set me on the right path. I'll be going to Dana Farber one more time before surgery after Christmas so I'll arrange to speak to someone while I'm there, and then maybe find a therapist out my way.

And thank you all for your words of support and encouragement. It is really helpful.

[Jolt]

Sorry to hear about your diagnosis--how scary! You're in a good place though, as far as the treatment and expertise that is available to you. As far as the potential for lymphedema, that is not an area I know much about (despite being a nurse) but it sounds like you've already gotten some good info. Like others, I think that if anything the exercise would be helpful because lymph is pushed along by muscular contraction. I'm wondering too if swimming might be a beneficial exercise to add to your routine--seems to me like the pressure of the water might help move things along too. Maybe somebody can give further info on this?

[KnottedYet]

We encouraged swimming for folks who had already developed lymphedema, because it was an activity they could do without wearing their compression sleeve or stocking. The pressure of the water did a fine job of keeping the edema down.

We always had a story we'd tell about the gradation of pressure for compression garments. I don't know if it's true, but it's a good story. Apparently some dude had lymphedema in his leg but noticed that when he walked around in the lake the edema got better. Et voila! The idea of graded pressure stockings was born! (high pressure at the feet grading up to light pressure at the groin, like water pressure when standing waist deep in water)

[redrhodie]

How are you doing, mudmucker? I've been thinking about you. Hoping you're well.

[mudmucker]

Well hey redrhodie. Thanks for asking.

The deed hasn't been done yet. Surgery is on Dec.30. On the 28th I have my last pre-op appt with the anesthesiologist.

But, since you asked....

Headwise I am doing ok. I have been very busy the last week prepping the house as I live alone. I have my support team in place, people will be visiting or staying over at first but I will be alone for most of the recovery. I've been preparing meals for the freezer, cleaning, laundry, last minute chores, bringing things out that I will use at countertop level, clothes at waist level, since I won't be able to lift or bend, lining up a person to plow for the winter, and ordered myself one of those easy grabbers.

There has been a calamity of events since the day I found out. Excruciating headaches and some weight loss because my stomach was keyed up, just before Thanksgiving. I have a frame that can't afford to lose even 5 lbs. But I cooked and had Thanksgiving at my house. I began to accept the fact, headaches went away and appetite came back and I was fine. Then a few days later, I had a toothache that required an emergency visit to the dentist in a snowstorm. Dentist couldn't do anything because I needed a root canal on a tooth with a crown and required an endodontist. Couldn't get anything done that day since snow closed some offices and some endodontists couldn't take me that day. I had my first visit to Dana Farber and could absolutely not cancel it. Dentist gave me tylenol with codiene to hold me over through the appt. Was only slighly effective. Finally found an endodontist to take me asap after Dana Farber. Needed a root canal and had some complications because of extra calcium deposits in the canal (read, alot of reaming and 2 hours of it). Also apparently there was nerve that was still alive. When the novacaine wore off I was in tears with the pain. Made an emergency call back to the dentist who prescribed Vicodin. Had to get it myself, 28 mile round trip (rural living) in nighttime bitter cold. Held me through 3 days later when I had root canal part 2. Refilled Vicodin so there was no repeat. Unfortunately I lost even more weight because I couldn't eat. Lost 8 lbs overall and this is not good. But then I began eating again. Until a few days later I came down with hives. Took Benadryl. Didn't work. Hives progressively got real bad, everywhere and spread to face. Tongue starting swelling more than usual, breathing tight, and had difficulty swallowing. Drove myself to the emergency room and was given a shot of epinephrine and IV of Benadryl and Solumedral. Cleared to go after an hour and a half or so. Gave me a prescription for prednisone steroid and just finished that course of treatment. Had some side effects like blurred vision but I had to get rid of the hives. I can't tell you how many trips to CVS I have made in the last 2.5 weeks, sometimes twice a day.

I wouldn't mention this so much as it has been absurd and there comes a point where there HAS to be a level of humor to this sad set of events. You find out you have cancer and then a whole series of calamaties ensue that could potentially stop you from having the surgery that is supposed to address the cancer. I dealt with all of it just fine, because I am used to making focused decisions, acting, and dealing with things on my own. I just went with it, although stressful I didn't feel too stressed - maybe that was due to all the bleeping pain meds I was on (and I haven't even had the surgery yet). The hard part was being in sometimes intolerable level of pain and discomfort. My biggest fear is that any of it would postpone the surgery. I made several calls to Dana Farber and my primary and I am still good to go....

[redrhodie]

You are an incredibly strong woman. That was a hard post to read. Sometimes life throws it all at you at once, and you have no choice but to deal with it, but what you've just been through is extreme. I hope the pain is under control, and the surgery goes as planned. Any idea what caused the hives?

I hope 2010 brings you good health and a quick and painless recovery.

[bambu101]

It is amazing how everything was thrown at you all at once, and how well you took it all in stride. You are definitely a strong person, and I'm sure you will come through the surgery and recovery with the same strength and fortitude.

Wishing you a quick recovery!

[Bike Chick]

I'm so sorry, Mudmucker. Hang in there and best wishes for a smooth surgery and speedy recovery. I hope you will feel like sitting at the computer soon afterward so you can let us all know how you are doing.

[KnottedYet]

(((((mudmucker)))))

[OakLeaf]

(((((((mudmucker)))))))

Hoping the rest goes much more smoothly for you.