TRIPLE POSITIVE GROUP
Comments
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pejkug - I don't see your stats at the bottom of your post to say how many lymph nodes you had removed but I only had two lymph nodes removed and I developed lymphedema during radiation. It has actually progressed into 'axillary web syndrome' with cording. Managing it takes effort and for me therapy so I would encourage you to take the precautions about needle sticks and blood pressure.0
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AreleneA I can't believe your doctor hasn't given you any information on prevention. Yes for my port I got my IV in my foot as well as the IV for my liver scan. Granted you risk is lower with only 2 nodes. My 4 node side so far doesn't seem to have issues. It's the 10 node side that has stage 0/1 LE.
Here's the link to LE risk reductio:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm0 -
My surgeon wanted to do my port removal as an outpatient in his surgicenter, but my insurance insisted I have it done in the hospital. And you wonder why our premiums are so high!
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Thanks Ladies for the warnings. I meet again with the NP Monday (prior to the 1st chemo) and she is supposed to go over everything with me. I guess I'm lucky I had a knowledgeable nurse at the OR on Tuesday who insisted in not giving the IV and/or the BP on the lymps side.
I'll be asking LOTS of questions on Monday for sure. I still worry about the Lymphodema setting in. I think it about it all the time.
Good grief Juli! My thoracic surgeon said in the office and a quick 5 minute procedure.
Anything else, I need to know, PLEASE let me know!
Arlene
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So the entire idea behind no IV or BP in node removal arms is the risk of infection, right?
I've been conflicted about this whole port thing for a while. But if Omaz developed lymphedema due to rads, a port wouln't have mattered, right?
My onc says that no one really knows why some women develop LE and others do not. I wish we would have taoed that appt with him, but we forgot the recorder at home. My DH says that he said the research doesn't support that simply having a BP in a node removal arm would be cause for infection in that arm.
And the site - the STep Up, Speak Out one - that is always linked to on BCO is poorly written and seems hoaky to me. They really should do a better job if they want people to take them seriously. Heck, I'm the Queen of Typos...I'm one to talk. The studies may be valid, but the website could be better written/formatted.
I don't know what to think. The idea of LE is worrisome to me. I've had 2 rounds of TCH already - both in the unaffected arm.
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LE is worrisome to me, to the point I refused axilla dissection!
While I'm glad I refused it (still) I can honestly say that a few women on these boards (like Lago) have journeyed (and are) going through it. This has allowed me to see that it is not worst case scenario every single time. I may be wrong, but I think the key is catching it early.
I do not have patience with sleeves and the like, so if I get LE during radiation like Omaz, I'll be in a world of hurt.
I have also run across people in the medical field who do not know about the no-stick/no-BP thing...but very few.
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You have to fight sometimes with the sticks and especially BP. I almost walked out of my liver scan because she insisted that they radiologist doesn't want the dye through the foot. I asked her what if both my arms had LE what would she do. She talked to the radiologist and s/he finally agreed to have the IV in my foot.
A woman in my building was diagnosed just before me. She's 13 years older, a bit overweight (recently lost a lot due to diagnosis stress) had 25-25 nodes removed and has just had her 4th chemo… and she DOESN'T HAVE LE! I'm thin, only 10 nodes removed and got it… probably started after my 1st or 2nd tx but the swelling became noticeable after my 4th.
They just have no way of knowing who will get it.
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Lago I am also thin and healthy and have le which stinks. I have had to wrap my arm can't just do the sleeve to get rid of it. I am hoping it is due to
Rads and will end or subside when that is over. I was told that being thin and healthy helps it resolve faster and stay milder in form. But I agree who knows who will get it. My sister who is totally different body type never did get it but although she is naturally a bit bigger than me she also eats much healthier. I am trying to get to where she is!0 -
LE - Hi, I think infection is a risk, also heat (such as hot tubs), any kind of trauma. that is what my LE therapist said. there is a book called 'lymphedema' that has more information. It is scary but we caught mine early and I was referred for help right away. I think knowing about it, talking to the onc office is important (my rad onc nurse actually spotted it) and getting therapy right away. Also, the sleeve isn't too much trouble. I thought it would bug me but it doesn't. (Of course if you ask me in the middle of the AZ summer I might change my mind!) I would say don't let fear of LE drive your treatment choices. Most women do not get it. I just drew that card from the BC treatment side effects deck!0
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elaineg… I got it and I didn't even do rads! I'm still not quite resolved either but I think it has a lot to do with my nails still being a mess (they are growing out but still hurt) and in general still seem to be retaining fluid even on the diuretic. I have mild discomfort at times but mostly a little thickness/solid below the elbow but not in my wrist. In general my arm feels fine when I wear the sleeve and stay away from salty foods.
I see my LE MD mid May so hopefully by then things will have completely resolved.
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My onc says I am at risk for Breast LE but not arm. Oh, joy! I'll have to talk long and hard with the radiologist when I get to that point. Need to get past the chemo first. I still ask myself all the time, since they got all the cancer from my breast and all margins are clear, why do I have to go through all of this! I know the answer, but sure don't like it. And, if the chemo attacks any living thing,why is the Radiation necessary. That one I really don't get!
Back to ports, I don't have the 'tubey' thing showing either but I'll tell you it is still very uncomfortable (todayi is day 4) and if I breath really heavy I can feel it and the top of my shoulder is very sore.
Nice day here in the NV desert!
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Arlene - I asked abou why rads after chemo and was told that after surgery the circulation to the tumor area is compromised and so there isn't as much chemo delivered to that area. Hence radiation.0
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Arlene, if you have had breast surgery of any kind, with any number of nodes removed, you are at risk for arm lymphedema. Even women who have had just breast reduction or augmentation, with no cancer at all, can develop lymphedema at any point post-surgery. Anyone involved in an auto accident where they slam into the steering wheel or dashboard is also at risk. For that matter, football players can and do develop lymphedema. Trauma to the chest/breast sets us up for it.
I'd just like to clarify about the infection risk. Yes, any infection in the arm, hand, or breast on your surgery side is a risk for lymphedema. But the problem with blood pressure on the affected arm is not the infection risk, but the direct risk of lymphedema because of compression of the lymphatics in the arm. The lymph system has been compromised in that whole quadrant of your body by direct damage to nodes, cutting of lymphatic vessels, and/or formation of scar tissue inside that can block lymph flow. A build-up of lymph fluid for whatever reason can overwhelm that compromised system and result in clinical lymphedema. Blood pressure cuffs force a build-up of lymph fluid and simultaneously crush the lymph vessels in the area for a period of time (the lymph vessels are very close to the skin). It was a blood pressure cuff on my left arm post-surgery (with only one node removed) that triggered my lymphedema, so I don't have much patience for health professionals who consider it unnecessary to avoid using an affected arm. Sure, it doesn't happen every time, to every women, but if it happens to you it's for life.
Pejkug, I'm one of the directors of the StepUp-SpeakOut website and I'd really value some specifics of the problems you're having with the website. If you'd PM me with the information it would help us make the site more accessible for the women who need the information. Thank you!
Be well!
Binney0 -
Thanks Binney! Do you know what causes the cords? They are so wierd. Is it because the lymph fluid stagnated in there from radiation damage to the nodes? Will the corded lymph vessels recover? Thanks for talking about the blood pressure problem I didn't realize.0
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Omaz, thrombosed (plugged up) lymph vessels do seem to eventually resolve and recover. There are some therapists who "snap" them, which provides instant relief, but there's some new evidence that "snapping" them may also damage them and is possibly more likely to lead to development of lymphedema. So the preferred intervention for cording is gentle stretching. An experienced lymphedema therapist can work the cords and help them resolve. (Sometimes they "snap" on their own during stretching, and that appears to be less damaging than purposely snapping them.) If your therapist is interested, s/he can contact the StepUp-SpeakOut site for videos of cording massage technique, but they can only be released to therapists because it's not a self-treatment technique:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htmHope some of that helps!
Binney0 -
Hi Binney - She does gentle stretching and after each treatment they feel better but get sore again over time so it sounds like she is doing a good job. I have never felt anything snap when she was working. She advised me to be very gentle with my arm since I have both the cords and LE. thanks0
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Wow, do I have a lot to learn. What is cording?
Binney: Thanks for the valuable information!
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Arlene - Binney posted a link to information about cording at the Step Up Speak Out website. Basically for me during rads I just did some light weights as I had been but the next day my arm hurt all the way from my armpit to my wrist down the inside. I talked to my rad nurse and she said it looked like LE and sent me to an LE therapist. She said yes it was and I got a sleeve and learned the self-massage. My arm still hurt though and over a few weeks these tight bands (cords) started to show up. About 4-5 weeks after it started hurting I could actually see them in the inner part of my elbow and in my armpit. They hurt. My therapist is working to gently loosen them. She makes it feel better for a while. I also have LE and wear a sleeve/guantlet. As you can see I only had two nodes removed.0
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Arlene. I was told that rads are the cleanup crew. It should kill any cell that might have been left after my lumpectomy. I asked why they were radiating the node are since they took a hefty chunk. I ve been thinking of rads as sort of an insurance. Not sure if I imagined this but thought maybe my dr. Wanted rads with HER 2. it is amazing how all of our oncologists treat differently. I believe mine is aggressive which is fine with me. Libraylil
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About LE.
After lumpectomy I have had 15 nodes eliminate, but next day the physiotherapist came to exercise my shoulder and thorax muscles to avoid post surgery LE. I got instructions of ten various exercises to practice every day. I does it, 5x a day, later at rads 10x. I haven't got LE, and I'm still making it for 1 ½ year every day. I have no LE yet.
But, another type of LE it could break out as outcome of infections, BP etc.
(Sorry, English isn't my native language)
Greetings to all sisters!
Slousha
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Greetings Slousha!! Glad you have joined us!0
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Hello Slousha!
I hope everyone is having a good Sunday. I was all gung-ho to go to Costco with my husband today. an hour later after he got ready I am not so keen on going. Grrr I am too impatient! He told me he thinks I'm wanting to do stuff too soon and to relax. I feel I have been relaxing for 5 months!
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Nora,
Same type things happening to me too. I got up, worked out, and then planned a day of shopping. Half way through the day I was wondering WHY I needed to shop when all I wanted to do was get a roast beef sandwhich and fruit bowl from Kroger!
So, that's what I did...heh.
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Oh a fruit bowl sounds soooooo good!
My day today? Ended up taking a 2 hour nap and putting on my pajamas at 5pm. There's always tomorrow!
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Nora,
Hubby and kids are on spring break. (I asked them to go without me. Call it morbid but I want my husband to have a little practice of being a "single parent" just in case.)
I have an awesome husband and father to my children so while he didn't necessarily WANT to do it, he did. So I've had three days all to myself. And instead of being productive...last night I started watching WEEDS, on Netflix and munching on honey dew melon. Wow. Love the show. Ended up staying up until 2:30 am to finish the first season.
I plan on more productivity today though. Darn it.
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TonLee - You don't have to be productive today, just relax. Take a few minutes for yourself.0
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TonLee.. Wow I am jealous! I would love for my husband to take my son and leave for a couple of days. Not that I dont love them or anything but just time to lay around, watch tv, no worries. Sounds like heaven!
Omaz or perhaps anyone else (I stated Omaz because she's a fellow Arizonian) I was told to stay out of the sun while I am undergoing chemo. I ended three weeks ago this Friday....how long am I supposed to stay out? It's supposed to hit 95 here on Friday and the pool will soon be calling my name!
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TonLee stop that! What are you going to do pick out his next wife/stepmom next.
You are doing all this aggressive treatment. You have many guns. I don't think you should worry about stage IV unless it actually happens… and even then you could have years/decades. Yes it's always in the back of our mind but it's not like you will only have 5 minutes to evacuate. I have spoken/met with a few stage IV women. They are leading more productive lives than I am righ now. It really puts things into perspective. Yes people actually live with this disease.
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Hi everyone, so I think I told you that I insisted on having scans done, right? well had chest and abd CT scan done today and my friend, the radiology doc, read them right then with me in his office and said they all look good, still have the cysts on liver, which he said are ok. One more thing off my mind!
DH took me to a school play Sat night giving up March madness basketball. We have friends with kids still in school,so supporting them. I know it was the last thing he wanted to do, but sometimes the cancer card wins.
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I stayed up too late last night!! lol
Lago, good point. I catch myself thinking I'll be dead in two years. My best friend from hs married a man whose 1st wife died of BC two years after being diagnosed. She had my exact diagnosis, down to the histology!
It's really hard when I go to her house. The 1st wife decorated (great taste) and essentially spent 24 years with her husband working toward this physical culmination of their financial efforts. All their children are grown, but the house is a solid reminder.
I love my BF, but she hasn't changed or added a single thing to the house and it scares the shit out of me when I go there. I can't help but think....my god, same scenario except my kids aren't grown.....24 years of marriage, same histology..I mean it is SCARY how alike we are.
Maybe because it's so in my face, I dunno.
That's the reason I kinda freaked out about the green tea during treatment. This woman who died, she took IV infusions of Vitamin C from an alternative as well as chemo, and essentially they told her husband it negated the chemo.
But 6 days after my last chemo.....I'm drinking green tea again. How concerned could I be?
My thought is...any anti oxidizing I can do before Rads starts...the better...since I won't be doing it during....
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