Worried about Lymphedema

SusanGA

ABout 14 days ago I was diagnosed with IDC grade 2. My Breast surgeon has given me the option of Lumpectomy, mastectomy or bilateral. I am an active young 70. Most people hear the diagnosis of cancer and worry about dying but I immediately started worrying about Lymphedema. My aunt has suffered from it since her lumpectomy and I have seen first hand how life limiting it can be. My greatest joy in life is visiting my children in Europe (once a year) so hearing that flying is an issue is very distressing. I am fairly obsessed with lymph nodes now. My tumor is under one cm so it is tiny. My surgeon told me she would do a radioactive injection and remove all the nodes that light up. My friend had a bilateral two years ago and her surgeon told her I'm going to take one node and if it is clear no more. She does not have any signs of lymphedema.

Sorry for this rambling post but is there something I should know about the two approaches to nodes and which surgery has the least likelihood to cause problems. I don't plan on reconstruction,

Thanks for listening to this. I must tell you my surgeon did not. She was otherwise wonderful but just waived her hand and said "you're not going to get Lymphedema". I tried to call her nurse today to discuss this ......no interest in this topic. Her response is "you are not your Aunt" . They obviously are not going to help me sort this

Kicks

I'm 70 now, was 63 when DXd IBC and when LE presented it's 'head' was1/2 way through my 12 weekly adjuvant Taxol. My life is not 'limited' at all by my LE - I do any and everything I want to with no limitations. I am a very active 'outdoor woman' - have/ride horses, bicycle, mow/garden, flyfish are a few of my activities that I do. Yes I do deal with LE - wear my day garments, night sleeve and use my FlexiTouch daily.

We are each unique and there is no 'One Size Fits All' when it comes to what we will (or will not) experience.

SusanGA

THank you Kicks. It is an inspiration to hear that those things are possible. I know I'll face it head on if it should happen to me. My challenge will be to fly safely

hugz4u

Susan. Nope your not your aunt and your not me either but that didn't stop both of us getting LE. Don't let them wave you off. My md laughed in my face when I asked seriously about it. No heartily he said, Your not going to get lymphedema. Well here I am.

Your smart asking questions and being prepared. You might not get it but it's safe to be proactive. Stupid docs

Kicks

Different Drs are different too! It was my Chemo Dr and my Surgeon who noticed my minimaal LE before I did. They got ahold of my PA and she got me in with my LET Guy quickly. Unfortunately, not all Drs are as knowledgeable about LE.

ChiSandy

No way to know how many nodes will “light up" nor even how many non-sentinels are stuck to them and have to be removed. I had only two sentinel nodes, but two “hangers-on," so 4 nodes were removed, all negative. Got some mild cording and stage 0 LE (at one early point it flared to Stage 1 but is in remission)—last time I saw the LE doc he said I could wait a year to follow up with him, just to keep wearing compression for exercise & long flights, keep moisturized, and be vigilant about breaks in the skin.

SusanGA

Thank you to all of you. I guess I let myself think I would never fly again but I am going to stay hopeful. I still have not decided what type of surgery to have but I am leaning toward single mastectomy. My reasoning is,I can continue to monitor my diet controlled diabetes on my other side. When you get cancer at seventy there is always another thing to consider I guess

alostlady2

Kicks, I am doing LE treatment with 3 more to go. They have recommended the Flexitouch system and are currently working with the insurance to see if it will be covered. I am so happy to read that you have such great success with this system. My onco told me I had minimal swelling in my arm, but the NP approved LE assessment. I was so glad she did. My breast was holding a lot of fluid. Thank you for posting your positive experience with the Flexitouch.  

I had one sentinel node removed - with micro cancer cells - but considered node negative.  8 x 8.5 x 3 cm lumpectomy, then 30 rounds of radiation from 4 angles (due to breast size) during July 2016.   I developed cellulitis Nov 2016. Then Feb 2017 the LE.

Some people get LE and others don't - there seems to be no rhyme or reason to it.

MinusTwo

Susan: Here's a link to an invaluable site. Most docs really don't have more than 30 minutes of training on LE in their entire med school years. Hugz is right - ask questions, be prepared. But know that life does go.

http://stepup-speakout.org/

LymphActivist

Sounds like you may have breast lymphedema (sometimes called delayed breast cellulitis). You might want to read about it on my LymphActivist's Site at www.lymphactivist.org. Use the heirarchical tab system RESEARCH --> BREAST LYMPHEDEMA --> For Therapists

Lymphedema of the breasts, chest and torso does not get the same attention as lymphedema of the extremities. Removal of one node, if it is in the drainage path for your breast, can cause back-up of the tissue fluid in the breast, inflammation (sometimes mimicking the more serious inflammatory breast cancer), swelling of the breast, and frequent infections. This condition can also result from radiation of the breast which causes the breast tissue to become fibrotic, and impair the drainage of lymph from the breast.

Have your physician refer you to a specially-trained and certified lymphedema therapist (usually have CLT or CLT-LANA behind their name) for referral and treatment. They can also instruct you on home techniques to reduce the swelling and pain.

swimangel72

Hi my dear friend! So here we are again communicating in an online forum but certainly not a fun forum as when we met online so many years ago, right? You are your own BEST ADVOCATE! Do not let any doctors wave your questions away! You've come to the best place on the internet for support and answers to your questions. BC.ORG was my lifeline - thanks to so many wonderful women who helped me with my own personal BC roller-coaster ride ten years ago. The combined minds, hearts and souls of the women here will hold your own mind, heart and soul aloft and you'll face each challenge with reassurance and strength. And you WILL fly again - do not worry - the lymphedema specialists out there are amazing - IF you even get it - but take baby steps and cross each bridge mindfully the way you are now and you'll be OK. Hugs and prayers coming your way!

SusanGA

swimangel72,you and the others ladies here are so invaluable to me. I am so grateful. Knowledge helps me to cope. I like to do all I can and then can I trust the process.

Thank you to all of you.

Tickety_boo

I've got swelling in my breast that had the lumpectomy. It's been 7 weeks since surgery and my breast is red, the lower half is swollen and it's painful to the touch. The doc called it lymphadema and I've got an appt with OT to deal with it. I only had 2 nodes out, both negative, but obviously it resulted in the swelling I'm still having.

hugz4u

tickety the red part doesn't sound good. How long has it been red?

If the red spreads quickly and your feeling flu like you might have cellulitis. That's very serious and a trip to emergency for antibiotics asap. If you do go, mention the words possible cellulitis with lymphedema. It's a rapid spreading infection Draw a circle around the red in pen to see if it's growing redder outside the circle within a couple hours or so.

If you have had the red a long time then I don't think it's cellulitis maybe post surgery complications. Either way lymphedema usually is not red unless there is a cellulitis infection starting. On the lymphedema threads here, in the search box on the home page type in word cellulitis to learn more about it.

Give us more info about your redness.

Sorella

I just finished radiation last week. My appointment for my bone density for hormone blockers was today and my MO casually mentioned that my breast has some lymphedema. She did not tell me to do anything about it and for the first time I left without getting that piece of information. I do have a PT who specializes in lymphedema but haven't been to her since radiation. Should I call my MO (who also said I should wait a month before resuming any PT) or just check in with my knowledgeable PT? Any advice would be welcome