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The Lymphatic System

February 24, 2010

I met with a physical therapist yesterday. I didn’t realize how much I didn’t know about the lymph nodes that were removed from my body.

My surgeon removed 18 lymph nodes from under my right arm, including the 1 lymph node that had cancer in it. Thankfully, no cancer was found in the other 17 lymph nodes.

What I didn’t realize was how invasive it is to have so many lymph nodes removed. I learned yesterday that 18 is a lot of lymph nodes removed. I’ve asked several medical professionals just how many I have in this area and they said “a lot”. But they never defined “a lot”. The physcial therapist did. “25-50”. Which to me, doesn’t mean a lot. I was thinking there were hundreds, perhaps thousands – so that having 18 removed is no big deal. But 18 out of 25-50 is incredibly high, if you ask me.

What this means is that I’m having a hard time moving my arm, and I need physical therapy to get my arm moving again and to keep from getting a “frozen shoulder”. The same day I had that last drain removed I started following the exercise sheet the clinic gave me, which was pretty much “walking” my arm up the wall and a few other simple exercises. The therapist thought I had a pretty good range of motion at this point.

The physical therapist taught me a “flossing” exercise that will help retrain my nerves, that were hurt during surgery and cause me to feel as though my skin is sunburned, even though it’s not.

“You’ll know by 2 year’s time what your final outcome will be,” she said. It might not take me 2 years to get to the end result but by 2 year’s time, that’s as good as I’m going to get.

It’ll be the goal, for the rest of my life, to avoid Lymphedema (arm swelling)*

I have to massage my incision area in order to get the tissue to reform. Right now I’ve got 2 ridges under both of my arms that used to be stretched forward by my old breast tissue. Now that the breasts aren’t there, the remaining tissue “pools” under my arms. It’s freaking weird!

After the physical therapy appointment I went  to my post-op appointment with my surgeon. She thought I looked great. Said something like “good, we won’t need to use a needle to drain.” (What the?!!!) She also informed me that it could take a year for everything to feel “normal” again at the surgical site.

A year?

I scheduled out-patient surgery to have my port catheter put in next week. It’s a catheter placed under my collar bone that has a direct line to my heart. Or one of the main arteries. Something like that. It makes it easier for chemo and blood draws. Apparently it’s excellent for a “power” something or other. I don’t know what the surgeon was referring to, it got all gobbledygooked right about then.

She left the exam room but came back in shortly after with a prescription for a prosthetic bra and prosthesis. I don’t know if it was me or if she really looked kind of sly about it. I can’t imagine she can remember one of her patient’s statements about having no desire for boobs or prostheses.

I took it. But I don’t like it. I don’t like any of this, in case you weren’t aware.

*If you’d like more information on Lymphedema after breast cancer, click on this link for the National Lymphedema Network.

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32 Comments leave one →
  1. Sue permalink
    February 24, 2010 9:33 am

    I’m glad you don’t like it! That means you’ll fight harder to get through this and get it over with. My friend has been fighting cancer (a brain stem tumor) for over 15 years. They shrink it with chemo & radiation, she’s in remission for awhile and then it comes back (stupid cancer). She’s done some motivational speeches over the years to other cancer patients. She always tells them to educate themselves about everything that is going on with their body. Sounds like you got yourself some good education about the lymphatic system. Who knew our bodies were so complicated?

  2. Paula permalink
    February 24, 2010 9:47 am

    Kathy, I am learning so much from your posts and your honesty. Lymph nodes! I thought we had ONE under each arm! I appreciate this so much. Also I am thinking of you every day and admiring your strength even when I don’t comment.

  3. February 24, 2010 9:52 am

    I know you have bigger things to worry about, so let me start worrying about some little ones for you. Here’s a question: I wonder where you will end up putting your deodorant? As I aged and my boobs started sagging, the place where I shaved and put deodorant moved, too. Now that you don’t have boobs to pull your deodorant place around, I wonder if you’ll know where to put it?

    • February 24, 2010 10:14 am

      Ha! I’ve already figured that one out – I’ll put it where the hair grows. When the chemo takes the hair away, I’ll put the deodorant under my nose!

  4. February 24, 2010 9:57 am

    I too didn’t realize how many lymph nodes we had! I didn’t even know what they were for, aside from swelling up when we’re sick, until my grandma had breast cancer and they removed some. Well, I don’t know how many since I didn’t realize we had so many! Anyhow, the only reason I even knew that she’d had them removed was because once when I was visiting her, she went to reach for something with her right arm and had to switch to her left arm because the right is where they took the lymph nodes. Apparently her range of motion was a bit limited in her right arm. I thought, before then, that when one had breast cancer, one took out a lump in the breast and that was it, or remove the whole breast if necessary. This whole lymph thing was new to me. I had no idea it was so complicated.

  5. February 24, 2010 10:02 am

    I’m not sure I understand why they took so many lymph nodes. They only took seven of mine, of which three were affected. The only thing I have to worry about is (1) don’t let them take blood pressure on that side and (2) the incision hurts when it’s gonna rain.

    I read about a mastectomy patient whose husband made an “art object” of rope hanging from the ceiling. She’d grab onto it when it was necessary to hold her hand in the air for a while. I’ll bet the Big Nugget can think of some other options. He is a Gem.

  6. February 24, 2010 10:08 am

    Wow Kathy – I am learning so much by your journal posts. Some of it is making me nod and other parts of it are making my mouth go dry and I am gulping. Regardless, even though the majority of us are far away from you and not 3D range, we are so with you along your journey.

    I really didn’t know we had 25-50 lymph nodes, I thought we had oodles and oodles.

    When does chemo start and do you have a plan yet for how many treatments etc..

    Thinking of you. xo

    • February 24, 2010 10:17 am

      We have 4 sections of 25-50 lymph nodes. 2 sections under our arms and 2 sections in our groin area. Chemo starts March 9th, if all goes well. “Well” is so relative now, isn’t it?

      • Leslie permalink
        February 24, 2010 10:42 am

        Wow, I am also one who is learning a lot from your experiences. A question : what about those nodes behind your ears and on the sides of your neck that swell up when you have an ear infection or a sore throat? Aren’t those also lymp nodes? Or are they different from the ones under the arms and in the groin area?

      • February 24, 2010 10:57 am

        I think you’re right, Leslie. I wonder if the physical therapist was referring to the lymphatic system of the arms and legs?

  7. poolagirl permalink
    February 24, 2010 10:10 am

    I didn’t know about all those nodes either! I agree that you had a lot removed! Good luck with the exercises and everything coming your way in the next few weeks. I burned down the candle. There is a new one now – from the grocery store – with a Mexican saint on it. I thought you would appreciate that whole Mexican saint business.

  8. February 24, 2010 10:17 am

    Just a thought. A friend had the b.c. about twenty years ago (when she was pregnant, actually, and had to postpone treatment until after), but she mentioned once that the port catheter, although never a problem in and of itself, could be annoyed by the seat belt in the car, which kind of ran right over it. So you might want to look ahead of time into a seatbelt adapter so the belt comes across you at a different angle. You can get them at most auto supply places, I think.

    • February 24, 2010 10:20 am

      Hey P.C. – I already have seatbelt issues addressed with the incision sites. You should see how I travel, some genius gave me two little pillows that I have with me at all times. I put one under my right arm when I walk around the house. Under the seatbelt when I’m riding the car, etc. They are amazing! I need to photograph them and post them so that my sewing readers can start making them for people who need them. (I could put them on my jewelry website!)

  9. February 24, 2010 11:05 am

    I just mentioned you on my blog, and I meant to write “breast cancer” but accidentally wrote “bread cancer.” Was thinking how much easier it would have been had you had bread cancer. “Oh, darn. This bread has cancer. Well, we’ll throw it out and get another loaf.”

    Keep on keepin’ on, sister. We are all on your side.

  10. February 24, 2010 11:48 am

    Oh, my! Blue is so right. In a word…….complicated! I’m sorry that this has become such a ‘learn as you go’ experience for you, but I suspect with the speed at which they dealt with the evil bitch, it is to be expected. I used to think that PT was a bunch of hooey, but it actually is amazing how those seemingly silly little exercises (like walking you hand up the wall) can help so much!

    And yes, please do post pictures of your Missing Booby Helper Pillows. I’ll see what I can come up with 🙂

  11. February 24, 2010 12:10 pm

    Hi,

    Over from Juney’s blog. I’m sorry and sorry again. I’m all for the having a rotten demeanor with this horrible taa-taa disease. I’ll focus some sunshiny, positive thoughts for you, so you can be mad and all bad-ass at this mother f***ker. I’ll be back to check on your progress. I’m in your corner through this darn computer screen. From one Drama Queen to Another, kick the ass of this thing with your bad self! Take care!

  12. February 24, 2010 12:24 pm

    Although I have a strong dislike for PT, I wish I had it offered to be post surgery. I didn’t have it after the mastectomy nor the reconstruction. I too had about 18 lymph nodes removed. There are times when the muscles under the arm and on the right side cramp. It is not fun! I wonder if PT would have done anything!

    Keep up the hard work.

    • February 24, 2010 12:31 pm

      Karen – that makes me sad that you didn’t get PT offered to you. I know it will make a big difference for me. I wonder if there’s anything you can do now to get help and avoid those cramps.

  13. February 24, 2010 12:35 pm

    Just found your site from Bye Bye Pie – so sorry about your diagnosis. I had bc in 2004, very similar to yours except no lymph node involvement – I had a sentinal node biopsy and only had one node removed. A friend had lots of nodes removed though and went through PT and swelling and pain in the beginning, but now does fine, even works out at the gym, but is always mindful of that arm.

    I had a lumpectomy, then chemo and radiation. It is hell, but manageable hell. One of the best things I did was join breastcancer.org. Lots of good information there, but the best thing for me was joining a group on the message boards of women starting chemo at the same time as me. A core group of us from all over the world really bonded and have since moved to a Yahoo group. Some of us even met in NYC for a weekend. They were all lifesavers to me and I highly recommend it.

    I’ll be thinking of you – please let me know if I can answer any questions.

  14. floweer permalink
    February 24, 2010 12:46 pm

    What an education you are giving us. Dinner is in the works – delivery about 6 tomorrow ok?? Beer type? You are amazing. Any other needs – let me know. Luv ya!!!!!!

  15. February 24, 2010 1:27 pm

    Hi! I just popped over from Bye Bye Pie. I’m sorry about your diagnosis. I know it sucks. My stepmum lost both the “girls” to breast cancer last year. She only had a couple lymph nodes taken and none had cancer.

    It looks like you have a great support group and if you can stand one more, I’m here. Rooting for you.

    Very warmly,
    Dawn in Austin

  16. goatbarnwitch permalink
    February 24, 2010 4:00 pm

    PT folks are generally excellent allies in any battle to beat the body betrayal odds. If you have any concerns about anything your PT suggests I have a friend who is a very experienced PT I could put you in touch with.

  17. yaketyyak permalink
    February 24, 2010 7:10 pm

    I like that you can get Our Lady of Guadalupe candles at the grocery store – near the Goya products!

  18. February 24, 2010 8:24 pm

    you should get some fake ta-tas, as long as insurance is covering it. if it were me, i would get gorgeous ta-tas and bedazzle them! those can be your fancy saturday night fever boobs. with all your jewelry skillz, you can make some pretty ones. build a collection!

  19. February 25, 2010 12:02 am

    Today at work we heard that our colleague who had breast cancer and has just done her chemo, has had her first follow up test which came up all clear! No more cancer! Hopefully we’ll all be doing the same amount of yelling for you in another 5 or 6 months time!

    And yes to doing what the physio says. I love mine almost as much as I hate him (love the getting better hate the hurting me bit!)

  20. February 25, 2010 1:31 am

    Ann, I’m sending you a huge hug….no, many huge hugs…as many as you want or need. With much love, linda

  21. February 25, 2010 1:33 am

    Oops, I thought you were Ann. How insensitive of me, Kathy. I send you huge hugs…as many as you need to feel safe.
    love,
    linda

  22. February 25, 2010 7:37 am

    What is this “flossing” technique? I have that sunburn (although I think of it as rug burned) feeling from my knee surgery. That was in July. Sorry to ask you for help, but I would love to get some feeling back.

    You continue to be in my thoughts and prayers!

  23. Lynn permalink
    February 25, 2010 9:36 am

    Thank you!!! for sharing…. all of this with us. You are very strong. Thinking of you alot.

  24. capitolady permalink
    February 25, 2010 10:03 am

    OMG! It sounds horrid! I’d hug you but it may hurt you more. 🙂 I had no idea there were so many nodes but yikes. 18 out of 50 or so! You must be super human to deal with it all.

    Hugs!

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