Anyone Else Dealing W/ LYMPHEDEMA After Node Removal?

Hi Ladies,

My hyst was on 2/11, good news is that all the cancer is gone, was isolated to the cervix. Bad news: Less than a week after the surgery my lower half, waist down, bloated up like a Macy's parade balloon, over a 30 pound gain of fluid, one of my daVinci incisions began leaking serous fluid and is still doing so to the tune of about a liter a day, and I had to go from percocet to relieve pain up to dilaudid. From my waist to my toes I am swollen, some areas painfully so, it is difficult for me to move around, clumsy and it hurts. I had to be readmitted into the hospital towards the end of last week because I was running a fever and the surgical site had began draining, all the docs who looked at me, including my own, were very reserved in what they would say about my condition. One said it was very 'rare', a few said 'interesting', my own doc wouldn't even say the "L" word (lymphedema). I called his office on Monday and insisted that he make an appt. to see me and make arrangements for me to go to the lymphedema clinic at the cancer center I go to. Finally! He put in an expedited request for me to receive lymphedema treatment and I have my first appointment there tomorrow.

Is anyone else out there dealing with lymphedema after removal of their lymph nodes?

Thanks for any responses!

My TAH was 5/2007 and I'm just realizing that I may have lymphedema. My situation isn't nearly as bad as yours, though. At times one leg is three inches larger in the knee and calf areas. I see my doctor in two weeks and see the OB/GYN who did the surgery next week. I plan to mention it to both of them.

I even had arthroscopic knee surgery this past November to try to get to the root of the swelling problem. While it did show a torn meniscus, the swelling has not gone away. My leg feels much heavier than the other. The physical therapist I saw after the knee surgery didn't realize until my final visit how swollen I am, even though I mentioned it a few times. After taking measurements of both legs, he suggested a compression stocking. I have an old one from a back surgery that I have been wearing on occasion.

Even though I had mentioned swelling to two doctors and the physical therapist, no one seemed to associate it with the cancer surgery. If it weren't for the Internet, Googling "swelling one leg" I never would have known. I never even heard of lymphedema before.

I had 13 lymph nodes removed, but no radiation. One study showed that women who have 10 or more removed are at higher risk for lymphedema.

I truly feel for you. That surgery, in itself, is enough of a hurdle. You're dealing with all of this at the same time. I'll keep you in my thoughts.

Lynne

Hi Lynne,

Thank you so much for writing to me. I don't think many women on here are dealing with lymphedema issues (and good for them!) so it's feeling like a lonely road to travel.

I went to see the lymphedema specialist Thursday, it was my first visit and basically an assessment. I was measured and then had a brief massage in one area, was told that it was 'hard' because lymph will pool in certain areas and because it is rich in protein, if left to pool it will turn the tissues fibrotic so the lymph needs to be pushed out of the area. It was painful, I don't know how well I'm going to handle much more massage during future visits, but am prepared to ask for breaks when it gets to be too much. Afterwards, the area she massaged was much softer, and I felt better, not painful to press any more. The rest of the appt. was the therapist and another lady creating an abdominal binder for me with pads placed in areas they thought I needed extra pressure in (where the lymph has pooled). I was told I need intensive therapy, which goes 4 to 5 days a week for about 3 weeks, where I am bandaged for 24 hours, return to the clinic and have the bandages removed and then re-bandaged, so that the lymph will be pushed out of my lower body. I also have appt's scheduled for massage and then sizing and ordering when some of this swelling is down for compression garments.

I would definitely mention the swelling and the question of lymphedema to the doctors when you see them. Like I said, that one small area that got massaged is so much better now.

I asked my doc how many nodes were removed during my surgery, he said 32, I couldn't believe the number.

It is surprising how proactive one has to be when there is swelling, especially if there is a chance it could be lymphedema, which is nothing to play around with if it gets severe since it basically might permanently destroy tissue if not treated properly.

Anyways, thanks again for sharing what you know with me, I hope all is well with you and you get your swelling taken care of.

((((HUGS))))

Hugs to you, too, Kinta. Your reply really has given me an idea of what may be in store for me. I had no idea that there is so much involved in the treatment. Also, I have a few areas on my left leg (my problem leg) which have larger bulges on them. Your post explained why that is happening. I asked the orthopedic doctor about one of them before he did my knee surgery and he said it was a bone. There is no way that was a bone! That leg isn't thin enough for a bone to show there. That bulge has gotten tender, which your post explains, as well. Thank you for such a thorough explanation as to what is happening.

Do you ever wonder why they removed 32 nodes from you? That seems excessive, doesn't it? Were you in advanced stages of the cancer? Thankfully, mine was caught really early, stage one uterine cancer. Because of my age and the fact that I don't want more children, they removed "everything." I now feel fortunate that they only removed 13 nodes.

Nearly two years ago I registered with hystersisters. Your post/question showed up through a Google search. I'm sure glad I saw it.

Good luck to you.
Lynne

Hi Lynne,

The massage does work, and I imagine the bandaging almost daily for 3 weeks would do wonders for any swelling and the two together should offer a lot of relief. But just the massage, where she basically 'pinched' the area and pushed a bit, alternating, it was very tender but afterwards it was much softer and the pain I felt when the area is pressed is nearly gone. I have even done this massage on a few areas myself now that I know what she was doing was forcing that pooling fluid around. It's not easy, definitely need a pro to do most of the massage, because I don't think I'm applying enough pressure (which=pain)! But am getting some relief on my own. Also, I don't know if you may need it when you go for treatment, but I would recommend since I'm a pain wuss, to have some pain med's, you may need rx strength or maybe otc will work for you, we all have different levels of tolerance. My lymphedema therapist wanted to refer me to a pain management specialist as well, but I don't want that right now, because my gyn/onc is giving me pain med's and I'm okay at the time. But if long term therapy requires it then I will ask for that referral.

I was definitely surprised when I heard 32 lymph nodes removed, my doc explained that he didn't want to take any chances that there was cancer in any of them or that the cancer would have the oppty to come back in them. One was sent out while I was still in surgery because it looked suspicious, but it came back benign, and that probably contributed to his decision to go 'really radical' with my radical hyst. Fortunately pathology report showed that my cervical cancer was contained within the cervix only, it was early stage 1b.

I'm glad our posts can be found through google, and hope they help any other women that may be out there looking for answers.

Take care of you!

Hi, Kinta,

Today I saw the ob/gyn who did my surgery with the aid of an oncologist. I mentioned the lymphedema to him and he seemed surprised that it would show up long after the surgery. He asked when I noticed the swelling and I told him last summer, but that I had never heard of lymphedema and wasn't aware that this might be the problem. I told him that I even had knee surgery, thinking that might be the cause of the leg swelling. He told me that he'd talk to the oncologist and get back to me.

Before I arrived home, he had called and left a message that he thinks I should see the oncologist and have her evaluate it. Being that I see my PCP next Tuesday, I'd rather wait and discuss this whole thing with her first. My visit can't come soon enough. She's terrific.

To make matters more complicated, on Sunday I somehow injured my non-swollen knee getting up from a chair while visiting someone in the hospital. I am concerned that it will swell and possibly cause lymphedema in the other leg. What luck. It will be more difficult for a comparison of measurements if they both are swollen.

One thing the doctor asked today was why would I have swelling in only one leg when nodes were removed from both sides. I don't have an answer to that except that possibly the knee injury last summer started the swelling process. I did tear the meniscus at that time. If it is lymphedema, maybe they would done things differently during the knee surgery.

Did you get the compression garments yet? If so, are they helping you?

Lynne

Hi Lynne,

((((HUGS)))) Sorry to hear you hurt your other knee :-(

About when le shows up, it can show up ANY TIME, immediately after the surgery to years down the road. It's a sad fact that us who have nodes removed become at risk for le for the rest of our lives, and any swelling is suspect and should be reported to a doctor as soon as possible. I only know this because when I was discharged from the hospital, before I could go home, I had to listen to a short lecture by a visiting le therapist who also gave me handouts on the subject and did a quick q&a session. The hospital I was at has a clinic for le, and I am going there for a few sessions, but since it is located in Manhattan and too far of a commute for me to do the intensive daily therapy I have just found a closer hospital that offers le therapy.

Just to share with you a bit from the handouts I received: All patients will have some post-op swelling, and this occurs near the area of the incision. Swelling from le usually begins in the lower leg(s). (My note: my right side is much more swollen than my left side, and parts of my leg on my left are fine, other areas are swollen - this is NOT a symmetrical type of disorder we are dealing with).

It disturbs me that your doc is asking you the questions about le when you are just finding out about it on your own through your own research! If anyone should know, ahem... shouldn't it be the 'pro'? Sadly, there is a HUGE gap of knowledge in regard to le, so it doesn't surprise me that there are lots of doc's out there who simply don't have the knowledge and expertise to recognize and diagnose le. I would be looking forward to seeing my onc too, if anyone has seen it/knows about it, then it should be her. She would also be the one to write you out an rx for treatment.

I found my therapist through a referral network approved by the hospital my gyn/onc and le clinic is out of. The referral network is www.klosetraining.com and they are trained in the le methods that the le clinic I was going to uses. I will be starting what is called CDT, complete decongestive therapy. I will be going in 4 or 5 days a week for about 3 weeks. They will do massage (manual lymph drainage), some exercises and bandaging, I will wear the bandages for 24 hours then go back, have more massage, exercises and be re-bandaged until the next day. Once this is finished and my swelling has gone down to what they believe is the lowest it will go, then I will be fitted for compression garments to wear, which I think have to be worn every day, from waking to bedtime, to keep the swelling down.

In the meantime, since I can't get in for CDT until later this month, I am doing exercises that I found online at this website: http://www.lymphedemapeople.com/wiki...g_after_cancer

I have already reduced some of the swelling on my own through the use of these exercises! I hope that you can find some relief too, but do stay away from heat, that is one rule for folks with le, no really hot showers, hot tubs, hot baths, hot pads on the areas that are swollen, because heat can actually make things worse.

I know you are worried about the measures of your knees, but just make sure that when you see your le therapist that you tell her/him what happened, this seems to be a long process to 'getting better' so there will be time for your other knee to go down, which I hope it does. And that's another thing, we have to make sure not to get injections in our legs, be extra careful about potential injuries, take special care with our feet and trimming our nails, that is also something that is taught during CDT, meticulous self-care so we don't put ourselves at risk of further le swelling. Also to watch out for fever, redness, swelling, rashes, itchiness in our legs and to get hold of our doc's (or our onc's, in our cases) if we should experience any of that, which are signs of infection.

Well, know I am sending good thoughts and wishes your way, do let me know how your appt. goes and if I can help in any way, and just share your experiences with me, I do care and will be happy to hear when you are better!

Kinta,

Thanks so much for those websites. I was looking for some exercises to try but didn't have any luck.

You mention heat causing problems. After my knee surgery, the physical therapist put heat on my knee at the start of each session. It's no wonder that I never improved! It seemed to get worse with the therapy.

My primary care physician is the one I had mentioned as being terrific. I only met the oncologist once for a visit before the TAH. I liked her, too. Tuesday, I'll report back to you, after I see my PCP. With the oncologist being in the city, I'd rather avoid going there, unless my PCP sees a reason to.

It's too bad that you have to go through such intensive treatment, five days a week. You won't have much time for anything else. You sound very positive in your outlook. Good for you! Know that you are in my thoughts.

Lynne

Oops, I just realized I sent you the wrong link for exercises (the one that addresses the knees, at least). It was on another site for le genital swelling, which I unfortunately also have. Here's the exercise (I have to modify some since hyst was about 3 wk's ago, no abdominal straining) the main point is to stimulate the healthy nodes and move the pooled, stagnant fluid up towards the healthy nodes. Here's the text:

Trunk massage and exercise routine

(TMER) for patients with Genital Lymphedema. Our Deepest appreciation to Denise from

St. Ann's Hospice Lymphoedema Clinic

and to Silkie for obtaining this for us!

Choose a time each day to carry out this massage and exercise programme when you can lie on the bed and relax while you are doing it. You will also need to remove and or loosen any clothing which would get in the way of the massage.

Your skin should not look red or pink at the end of the massage- if it is you must be pressing too hard- go lighter.

1. Lie with your knees bent up, feet on the bed. Place both hands on your stomach just below your ribcage. Breathe in as deeply as you can through your nose so that the air pushes your stomach up under your hands. Then breathe out through your mouth, pulling your stomach muscles in at the same time to squeeze all the air out. Repeat 5 times

2. Place one arm above your head, place your other hand just below your arm pit and gently and slowly move the skin round in as big a circle as possible with your hand. After approximately one minute change and repeat the same routine under the other arm. For approx. 1 minute on each side.

3. Using both hands stroke gently and very slowly from your groins on both sides up towards your armpits. Then stroke from the centre- just above your genital area, up and out towards your arm pits You can do both sides at the same time, or just one side at a time which ever is easier. When massaging try to make sure that your hands are relaxed and the whole hand is in contact with the skin.

Try also to massage your back from the central crease between your buttocks up over your waist-line or ideally get somebody else to help you with this. Massage for at least 2-3 minutes on each side.

4. Place your hands in your groins and as you did in ‘2’, slowly move the skin round in as big a circle as you can. For approx. 1 minute

5. With your knees bent up, squeeze your buttocks together as firmly as possible hold this while you tighten the muscles of your pelvic floor between your legs and then pull in your stomach muscles as hard as you can- hold them tight all together- and then relax. Imagine you are trying to zip up a really tight pair of jeans and having to pull everything in to get the zip to close. As you tighten everything up, breathe out- as you relax, breathe in. Repeat 5 times.

6. Hip and knee exercise. Bend your knee up towards you. Clasp your hands round your thigh and gently pull your knee towards your chest hold it there for a count of 2 then release the pressure by straightening your elbows repeat this slowly a further 4 times. Change legs and go through the same routine on the other side.

7. Finish off with an ankle exercise. Pump each foot up and down at the ankle, slowly and deliberately, 20 times.

This combination of exercise and massage will generally improve the lymphatic drainage from your lower body. Movement and exercise always helps to stimulate lymph drainage. Try not to sit for long periods without movement, keep exercising the muscles of your pelvic floor it will help. You may need advice from a physiotherapist about this.

The above exercise (modified) was helpful to me from the first day, I did some of the exercises seated, out of order, but still seemed to work well. I lost some swelling within hours. Just slow, gentle movements, pumping, light massaging with my hands, very easy.

Do let me know how your appt. goes, and I'll do the same, I see my doc and have my next le appt Friday.

I think it's easier to stay positive since I know that this is treatable, I may have to deal with it for the rest of my life but there is help and I can learn how to do a lot of this treatment on my own. Of course, it was very upsetting at first, I cried, it not only hurt physically but psychologically it was very hard to deal with. But now I feel better since I'm doing something (seeing my therapist, going for treatments, doing exercises) about it.

You will be in my thoughts too!

Kinta, I just saw my primary care doctor today and told her about my concerns of possible lymphedema. She ordered a CT scan for tomorrow morning, just to rule out a mass of any sort which could be restricting the circulation and drainage in my limb. After she receives those results, and if they are negative, which she assumes they will be, we will then do "full-force lymphedema treatment," using her words. She didn't seem to think I needed to travel to the city to see the oncologist who did my hysterectomy (as suggested by my ob/gyn). She felt she could handle everything and I agree. I'm totally confident in her abilities.

I also had a knee x-ray today on the non-swollen leg and have to schedule with the orthopedic doctor who did surgery on my other knee. I'd like to hold off seeing him just until I get the true diagnosis of lymphedema. He may take more precautions on that leg if he knows it's a concern.

So, the saga continues. I'll know more, Kinta, after the results are in from the CT scan. It shouldn't be long. Finally, things are moving quickly. I'll keep you posted. Hopefully, you're continuing to improve.

Lynne