foot still swollen

Hi sisters,

So I spoke to the doctor - the Cat Scan/MRI came back with the results area swollen from radiation. I had mentioned last week that the pelvic area was swollen (a hard feeling) my leg and one foot. Everyone had pretty much mentioned lymphedema which I have to thank each and every one of you for informing me of this because I automatically assumed the worst "its my nauture". I learned a lot about lymphedema that day with all the links everyone provided me.

When I spoke to the doctor he just recommended to try to elevate the area. Easy said - but in my real world I work in an office sit all day then commute on a crowded subway. There is no time except night to elevate my leg.

Now here it is a week later and my foot is still swollen he also mentioned "these things sometimes heal on there own" ITS BEEN SIX MONTHS. Does this sound like good advice?

I just want to make sure I am doing the right thing. Can this get better in time without seeing some sort of a circulation doctor - (just don't want to ignore this for three months until I go back to him). I can take his advice and take it out of my mind (I am getting tired of calling there - I think the receiptionist screens my calls, ha-ha). Any thoughts?

Thanks for everything!!!!!!!

Hi there,

I can't offer any advice about the 6-months-to-recovery thing, and I never had radiation, but as for elevating your leg during the day...can't you drag a chair over and prop your foot up on it while you work at your desk??

If you are worried about his advice.....why not go for a second opinion to put your mind at ease???

Good luck, i hope it heals SOONER rather than LATER!

K9

Hi there,
I have tried - working for a law firm - they frown upon anything that would require my elevating my leg. I started wearing sneakers in the office but foot is still swollen.

My main concern in the cancer (of course) it just seems like anything else is so minor after what I have been through and my doctor has been so wonderful so I trust him. Its just uncomfortable to walk around with a swollen foot.

You work for a law firm and they frown upon anything that would require elevating your leg??? What am I missing? Isn't there something called the Americans with Disabilities Act? Isn't this something that a law firm would understand?

Gio, I work in NY, too, and I certainly know where you're coming from in terms of traveling into the city. But if your doctor is suggesting elevating your leg, then why wouldn't you do what you can to elevate it as much as you can? I'd speak with someone in the Personnel Dept. (assuming this is a sizeable firm). THEY know what the ADA is all about.

Hi Gio,

I have had a similar problem since surgery and radiation. My Doctor wasn't too worried about it either. Of course, for some reason it was never that swollen on appointment days.

I am not a Doctor and this is not medical advice. It has just helped me. My foot is actually more swollen after sitting around on the computer. I have found walking really helps the swelling. I think it gets the circulation going. For awhile I also wore a stocking type garment that went up to my knee. It did not help the swelling in my pelvic area, but it did help with my foot and ankle.

So you might try getting one of those stockings. I got mine at a local drug store. Also try getting up and walking around during the day. I also put my foot up in the evenings when it is bad. Knock wood the last couple of months it has not been too bad. And for a long time I could not even get my shoes on.

If it stays bad or gets worse, you should push your Doctor to do more.

Good luck,
Sharon

Again, this is not medical advice, just some idea that helped me.

Hi Gio,

In my opinion, what you are explaining sure sounds like Lymphedema to me.

I had a BSO/TAH with lymph node dissection in November of 03 for Endometrial Cancer. Almost immediately, I developed Lymphedema in my lower extremities. At first, it started, or what I thought at the time was only in my right foot. My shoe was hard to put on and the tops of my feet ached. After seeing my ankles become swollen many times, I mentioned it to my doctor during one of my checkups. I told him some days they looked great, and then there were other days in which I experienced more swelling.

He casually said it could be Lymphedema and that it was no big deal. Yeah right. Honestly, I think he just did not want to deal with it since he never informed me this could happen. It is astounding; I find that most doctors will not tell you that there is a good chance after having lymph nodes removed or if you have radiation that Lymphedema can occur.

Not taking his causal brush off, I insisted that I get to the bottom of this. It was only at that time he gave me the name and a prescription to see a Lymphedema specialist in my area.

Thankfully, I was able to get in to see her the next day. Meanwhile hoping that all of this was something that would go away forever, perhaps after a treatment or two, she gave me the bad news, “This is Lymphdema and it is a lifelong condition.” Gosh, that hit me like a ton of bricks. I only just got over a bad chapter in my life, things were looking good, and I even had days where I forgot about the “C” word. Now I am reminded everyday.

Today, I suffer from very mild swelling in my right upper thigh, right hip, and buttock area. Occasionally my ankles and tops of my feet become slightly swollen too. However, I am happy to say that it is being managed with weekly MLD treatments, at home care by using various techniques my therapist taught me, and by wearing custom-made Elvarex compression stockings when I need to.

Gio, I strongly recommend that you see a therapist for a consultation. A MLD therapist is the most qualified to diagnose this particular condition. Most doctors do not understand it, nor understand how to properly treat it. Sadly resulting in a large number of suffers undiagnosed.

I hope and pray what is going on with you is not Lymphedema, rather a temporary, non-harmful side effect from your radiation treatments. Nevertheless, if it is, keep in mind that with this condition early treatment is important for the best outcome.


Blessings,
Lynn

Hi - I got lymphedema during radiation and my doc. blew it off , thinking it would correct itself. It didn't and a year later I have swollen upper thighs and pubic area. All the doctors look at my feet and say it usually starts there.

I just got done with rehab and I asked my therapist about the foot thing. She said lymphedema can be anywhere on the leg.
Support stockings really help. I wear running shorts and I experience very little swelling now.

It is common and totally managable - but don't let it go because then it could advance. I would start to wear support socks until you see a lymphedema therapist.

You will be fine - it just takes some getting use to.

Katherine

Thank you for taking the time and explaining this to me in detail. I was told this is not lymphedema yet but could be in the future. The doctor said this was inflamation caused by radiaiton. He told me to hold off for now because "the body has a way of healing itself" - I figured I would wait a little bit but if it does not get better get a referral to a specialist. Can anyone explain what the specialist will do - is this sort of like a phyiscal therapist?

Gio,

During your first visit, he or she will assess your condition and should talk extensively about the things you need to be aware of. A good therapist will give you suggestions on how to manage your condition and will take measurements of your legs, so they can track your progress and fit you with the proper type of compression hose. However, each therapist will work a little different, the most important thing is to make sure that your therapist(s) are either Vodder or Foeldi trained and certified. Vodder and Foeldi are top-notch schools and these therapists are the best in this field.

Visit http://www.vodderschool.com/ for more information. Vodder’s site also includes a helpful link, which will direct you to a therapist in your area.

As for the actual treatment, they will perform CDT (combined decongestive therapy) and MLD (manual lymph drainage). The names sounds painful and scary, but I can assure you that it is not at all. Therapy consists of opening up lymph pathways by using a gentle, rocking motion over key lymph node areas, such as in the axillary area (arm pit) and on both sides of the neck. Next, they will proceed to move the extra fluid out of the affected area along these "opened up" pathways. They do this by using a very light rhythmic touch, almost as if you were petting a cat, which will help to move the fluid into specific areas in your body that will assist in lymphatic drainage.

Sometimes your therapist may choose to use various wrapping techniques depending upon the amount of swelling that you exhibit. Again, depending upon the specialist and your unique case, treatments will vary somewhat, but the basic techniques they use should be the same.

The frequency of visits can be anywhere from daily to once a month or less. I started by having treatment three times a week for the first two weeks, followed by twice a week for one month, and then gradually tapered down to once a week for the past two months. Throughout these treatments, I have learned a lot about Lymphedema and how my body responds to the different techniques and suggestions that my therapists have made. Good therapists are essential to success and I am extremely blessed to have found two “Angels” that have helped me tremendously.


Blessings,
Lynn

Hi Lynn,

I called all the numbers from the webiste while they were all very helpful, none excepted health insurance. I cannot afford the prices which run $100 a session for 3 weeks straight. Do you know of any that take health insurance?