Scared: some questions
Hello ladies, I have some puffiness above my right mastectomy scar closer to my arm pit. I saw a LT a couple of weeks ago and was diagnosed with mild LE. I wear a Spanx shirt at night, and also a preventive sleeve on my right arm when I fly, do strenuous activity, etc., She told me I didn't have LE in my arm and risk of infection is low due to me only having the two sentinel nodes removed. I do the draining exercises twice a day. She also said there's a slightly higher risk of infection in the affected area, but not so much in the arm or other areas. Is this correct? She has twenty years of experience so I trust her. I'm just petrified of infections because I try to avoid antibiotics if possible due to three bouts of C Diff. Also if other areas get sunburned does that mean I'll get cellulitis or something?! I have a slight sunburn on my face and front of my neck and my right arm, and I have extreme anxiety right now! We were at the Calgary Stampede and my husband thought our seats were in the shade but we were still in the sun for about twenty minutes before it got shady, and I didn't apply sunscreen because I thought I wouldn't need it. I've been in tears since last night, and cried pretty intensely several times, thinking I'm doomed. The puffy area didn't get sunburned. Everything I read about LE makes it sound like you're doomed if you have it. I'm really down in the dumps. Please calm my fears! Thanks in advance!
Comments
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Would love to be able to go the Stampede someday - have wanted to for over 50 yrs but have never made it yet. Spruce Meadows too.
LE is not all 'gloom n doom' for all by any means. We are each unique so it is somewhat differemt for differemt ones of us. I can only speak for myself - it is a bit of an inconvience but does not slow me down or effect my QOL. Yes, I do wear day garments basically all the time, wear a night garment and use my FlexiTouch daily but thats just slight inconviences that allow me to LIVE my very active life. I am 4 1/2 yrs since LE DX and still (knock on wood - my head ) have never had any infection even though I've succeeded in getting quite a few cuts/punctures in less than sterile situtations. Some of what I do is mow (my yard and several others to help some who can use it), garden, have horses I care for (dogs & a pet bunny too), bicycle, and fish. In the years since LE DX, I have take up fly fishing (always fished before), fly tying and thanks to Project Healing Waters have learned to build rods. My latest new hobby is carving Woodfellows, not to forget learning to flint knapp. In case you haven't figured it out - I'm really into 'outdoor activities' and I do realize that many women aren't but doing the many things I like to do, I get lots of cuts/scrapes that can not always be prevented.
LE does impact to varying degrees your life, but it does not end your ability to be ALIVE. Being ALIVE has different meanings to each of us.
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Kicks, thanks for the reply. Was my LT correct in that the greatest risk for infection in on the affected area only? Or do I need to worry about it everywhere? She told me the risk was the same as anyone else if I like get bit or cut anywhere else, even on my arm or neck on the cancer side, since I don't have it there. Is that correct? I'm a nervous wreck, if you can't tell. Thanks!
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My understanding is that you divide your body into quarters. Now I have LE on my left trunk and left upper arm, so anything that affects the left upper side of my body could potentially affect my LE. Sunburn on face,, that I'm not sure.I would think left side of face would apply to the quarter of the body.You said it was a slight sunburn? Maybe apply some aloe and take great care to stay out of the sun until it is healed. Try not to be too anxious! I know that's hard to do, but hopefully all will be well and you will heal up from the sunburn just fine.
How was the Stampede? I've always wanted to see that too. I just got thie great hat from CureDive and it really shades the face. (I live in FL and I need that) You might want to check it out for further outdoor activities
.http://www.curediva.com/chemotherapy/hair-loss/seasonal-hats/naples-hat.html
Hope you feel better soon. Keep us posted.
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I am known as the Burn Queen in my family.
When I had my sunburn I swelled with my bra on. the straps dug in and puff all around them. I also burned my hand in fire bad around the same time frame. I believe this kicked off my LE.
Check to see if you are puffy on sunburned area. It sounds like your burn is light, mine was not. I think you might be ok but keep looking and noting strange feelings in the arm etc
There are really pro girls here that have great advice. Stick with us to remain undoomed.Knowledge is power and you need LE knowledge.
Girls, if you have a bad burn: my doc gives me flamazine creme. I think it is the stuff they use in burn units. There are two types one that has a shelf life of 7 days the other long shelf life. Haven't burn myself lately so I would have to do research on which flamazine has the better shelf life. I still have some left. Works great.
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I had to look up flamazine as I was not familiar with that name. It's a Canadian name and in the states, it is called Silvadene and requires a prescription.. Just FYI !! And yes, it is used in burn units, etc. -
Lovemydobies - I am not a Dr or other medical person so can only say what my 'people' have told me.
I was not told to be any more concerned about other parts of body any more than I would have been before. Infections are possible any time the skin is broken but usually the lymphatic systems moves the 'junk' away but in areas where the lymphatic system is compromised, the 'junk' accumulates and infections can rapidly progress in those areas (cellulitis). Our bodies are each unique and unfortunately , some of us are more prone to developing infections than others of us 'no matter what'. As I said, I'm 4 1/2 yrs post LE DX and have had no infections - all my cuts/scrapes/punctures, I handle with peroxide and it works great FOR ME, but doesn't for all. I do not want to use antibiotics unless absolutely necessary. With that said, I will use/take antibiotics - as I am now for an eye issue - when it is necessary.
I have been encouraged to do all I want to do by my Drs and my LE guy. To embrace life and not fear it..
glennie - I'm a 6 th generation native Floridian though no longer live there.
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6 generations, kicks?? that's awesome. I'm a native and people are constantly surprised by that. Like,, yes,, babies are born here in FL. LOL! -
I have just been diagnosed with stage III IDC.. and mestastic carcicoma of my lymph noir. I go see an oncologist to.morrow and am scared.to death. Anyone who can give me.some insight or something what I should expect ?? And what lies ahead?? I am 34.. and need so.e reassurance
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Yup - 6 generations on my Mom's side . DUH - babies were born for MANY years in FL. Both of my Sons were also born in FL. Daddy's side had also 'pioneered' 1880's.
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feeling overwhelmed: Well first off you have an excellent support on all these boards. People have answered so many of my questions. It has been valuable and empowering to get more knowledge on my cancer and lymph concerns.
I too was invasive stage 3 with 1 possible node affected but they were not totally sure. My nodes were removed and I had a choice of double or single mast. I chose dble because my cancer was so advanced and my type could move to other breast. I was 45 but they figure my cancer was at least 10 years old because it was hockey puck size. 10 years later I am here but I would have never believed it when first diagnosed. I thought I had a death sentence for sure and was raising my daughter to boot. We still don't know our future but I am grateful for what I have and take each day as it comes. Do shed tears because it is so healing. I never cried so much in my life. You will to.
Not knowing what's going on is frightening but you will find out more tomorrow and doctors are generally sympathetic. Ask any question that pops into your head and bring someone with you as we tend to come out with a glazed look and forget what doc said. Take notes.
Things do get better and oncologists are really good about cancer treatments these days. So many advances. I think you may get radiation but you will have to wait for your docs to give you your treatment plan. Radiation was easy for me but I did get manageable burns that I received meds for. It was totally doable though 35 sessions for me
Your stage sounds like they may take your nodes out and so yes you will be at risk for Lymphedema. (LE) This will prevent your cancer from spreading which is great news and you can learn how to get a jump on care and prevention for LE.
Go to stepup-speakout.org. Some girls wrote the website and it answers tons of your questions. Some girls get LE from one node out and others get 33 nodes out and never get it. One can never tell.
Tell docs you want full lymphedema education and get your arm measured for size before your surgery. That way you can tell if your arm is getting bigger and swelling. The website I gave you tells how to find a lymphedema therapist who should be certified and have had lots of training. Go to them before your surgery even if the doc says not to do it.They only learn about lymph system maybe one afternoon at the most in med sch. the majority doc don't know much about LE. They may even say you won't get it. Keep coming here, ask any questions.
That website may have info on what to do before surgery so so read it.
Seems like younger ones are getting more diagnosis. Just had a call tonight of my friends friend having invasive large cancer at age 29, She discovered it after weaning her year old just over the last month. Ugh ....dang cancer anyway. We got to band together and fight. That's what these boards are good for. Good support. Take care we are in your back pocket.
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There is a risk of LE with ANY surgery (or traumatic injury), rather or not nodes are removed. The more nodes removed the more likely to develope LE but nothing is 'written in stone' as to who will develope it and who won't. Any surgery can disrupt the lymphatic system flow thus possibly resulting in LE. I have a friend who had minor/non-invasive knee surgery but she deals with worse LE than I do and I had 19 positive nodes removed.
It would be great if more Drs were knowledgeable about LE, alas, many aren't. I was one of the lucky ones whose Drs are knowledgeable and realized before I did that I needed to see an LE therapist. See an LE Therapist who has LE education - not some PT who claims to 'know all about' LE but does not have a certificate. My LE guy has his Masters in OT but some will be PTs.
LE (as I've said before) is not the end of LIVING/ENJOYING LIFE unless you choose that road. Inconviences - sure but there are many 'things' in life that are inconviences - it's how anyone decides to handle them that matters. "If life gives you lemons - make lemonade."
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Thanks for the replies everyone. For those who asked the Stampede was great. We went to the chuck wagon races too and those were fun. Weather was great. It was 75-80 degrees during the day and in the 50's at night. As far as LE goes, I'll just have to take it as it comes I guess.
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I have a question regarding lymphe...A couple of months ago I woke up with my right arm and forearm was hurting and hand. It hurt for a few days. And then it went away. I saw my Onco Dr. a few weeks ago and shared this concern with her thinking Lymphe was starting to develop. My Onco said that it takes at least 15 lymph nodes removal in order for lymphedema to develop. I read a small section on this website that if some lymph nodes are damaged during the removal of some, then that can also cause lymphedema.
My right arm continues to be slightly swollen and hand also hurts. Has anyone developed lymphedema or has heard of someone develop lymphedema just by having a few nodes removed?
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there are plenty of us with LE from just a few nodes or even one node
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Oh for goodness sake. What an outrageous bit of misinformation from an onc! Martessa, you might print a copy of this document and give it to your onc: http://stepup-speakout.org/PDF%20ESSENTIAL%20INFO...
It's an article written for physicians and other healthcare providers, by an MD who has LE after breast cancer treatment. It's straightforward and fact filled. She mentions the node count issue on page ten.
Studies are all over the place on pegging the risk percentage with just a few nodes, and one group of researchers reviewed years' worth of studies to try to profile that and other LE risks. Their report (Shah C, Vicini FA (2011) Breast
cancer-related arm lymphedema: Incidence rates, diagnostic techniques, optimal
management and risk reduction strategies. International Journal of Radiation
OncologyBiologyPhysics, 81(4): 907-914.) shows that many studies of women after BC treatments do indeed show a high incidence of LE with just a few nodes removed. The study-of-studies found that the range of LE incidence after LX with SNB plus breast rads is from 3-23%. LX with no nodes removed, but rads to the axilla--1 to 61%. MX with SNB--3 to 23%. MX with nodal rads--58 to 65%. The reason the ranges are huge is that unfortunately, LE studies tend to be a bunch of apple/orange research approaches. Researchers follow zero standards for defining the criteria for a diagnosis, nor for what measurement technique to use, nor for how long of a follow-up period to use after surgery or rads. But even so, you can see that there were studies in the group reviewed that found significant LE incidence with just a few (SNB) nodes out, or zero nodes out but using rads to the breast or to the axilla.I can understand why a primary care MD might not be well informed on LE; not enough patient critical mass with or at risk of LE to nudge them into self education. But an onc? For cryin' out loud...there's no excuse for that kind of misinformation to come out of an onc's mouth, when by definition a large group of his/her patients are going to get LE as a consequence of treatments he/she is managing.
I had bmx with only SNB on one side, and with no rads. I have lymphedema. The SNB was a super abundance of caution, and when I asked about LE risk, I too was given a bunch of hooey answer that there was essentially zero risk. Had I known there was a real risk, I would have opted for more imaging to resolve a question instead of the SNB. These medical 'experts' really need to get it right.
Grrrr.
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Thank you cookiegal and carol57 for your input. My Onco has retired to be with her children. I was assigned a new Onco but I will not see him until January 2015...that is when my 6 month follow-up is scheduled for. However, I am seriously thinking about seeing my new Onco before that time.
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Martessa, any member of your medical care team can refer you to a certified lymphedema therapist for an evaluation. The step-up site has some help on finding a qualified therapist:
http://stepup-speakout.org/Finding_a_Qualified_Lym...
A lymphedema therapist will not only measure you for swelling but will also listen to you explain how the area feels and check the texture of your skin. If it is LE, the sooner you start treatment, the better.
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I only had 6 nodes removed. And I'm "thin",,, so I'm not at risk for LE.. HA!!! Guess who has it??? -
Martessa: January is a long way off. I would ask your primary MD or see the ONC early and get a referral. Get going on it early. Even if they tell you,, you don't look like you have it,, go see a LE therapist anyway. Make sure!
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Marissa - Nodes do not have to be removed for LE to develope. It can develope after any surgery or trauma and is not restricted to breast/arm area. I have a friend who had minor, non-invasive knee surgery and she deals with much worse LE issues than I do and I had 19 positive nodes removed.
Your PCP can give you a referral to a LymphEdema Therapist. Even if it does turn out (hopefully) to not be LE, you will have more knowledge and a baseline to work from IF ever needed. If you are developing LE, the sooner you get TX - the better.
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