Can we have a forum for "older" people with bc?
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I had insurance when I was diagnosed and began chemo, BUT They put a halt on any cancer treatment, appointments, drugs, etc. I was fortunate enough to find another insurance that covered most, with a small co pay. However, I was left with a HUGE bill from before. I negotiated a payment schedule and they reduced my total by 40% because I made an effort to pay it off. I am still paying and have a ways to go before I see a "paid in full".
There was a program on tv the other night of insurance nightmares in the USA. We are the ONLY civilized country that denies medical coverage to ALL of its citizens. OK, I am off my soapbox for now.
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hi, potter girl,
no, you are not the oldest.....i have 2 years on you, so listen to your elders. i hope i am catching you before you hop that plane to france. (france! how wonderful!) you have already shown great wisdom wearing a sleeve for that "short" hop to minnesota. for goodness sake, don't even dream of flying to europe without that sleeve!
the girls here refer to themselves as "seasoned," which i think is appropriate with reference to life and its ups and downs. when it comes to being a survivor for 30 years, i am downright peppery, probably from being doused in seaoning a few more times.
please do not take umbrage, jan, but to suggest that it took 100 plane trips to bring on lymphedema is akin to saying you only had 2 nodes removed, or that there is 'only' minimal risk.
indeed everyone is different, but are you sure you want to take that risk? whatever made you think that the danger of developing le from flying is a cumulative one? that is one theory i never heard, but it is quite creative and may actually have merit, but again, do you want to take that risk? or worse yet, advise others to take that risk? i think the risk is more like shooting dice each time.
of course, i could be wrong, potter, but wearing a sleeve is not cutting off a finger. it is only wearing a sleeve. ask your good old boy of 50 years (i have one of those too!) if he wants you to take this chance. mine likes to gamble and take risks, but not with my well-being. says he has too much time and money invested in me to take unnecessary chances and have to start from scratch all over again.
okay, kids, i am done. i promise not to go into this again; twice is enough. i apologize if i have offended anyone. i am flying today myself, and i have yet to pack, but i wanted to catch you potter girl, before i left. fly safe..
oh, and i have to remember to put on my sleeve. i am not likely to forget.
barbara-
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Good morning ladies! Thanks so much for the info on LE and the bracelets.
Hey Jackie, I've got the allergy problems now, too. It's funny but they went away when I was doing chemo and I had hopes they were gone for good. Surprise! They're back!
Jan, I'd love to hear more about living THE NOW and getting rid of the worry.
Welcome to this thread pottergirl!
Mikita, I've been wondering about you, too. I hope all is going well for you!
Rita
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I was looking through some threads yesterday and did find a posting from Mikita somewhere but I cant remember where......*rolling eyes* sorry bout that.....but it sounded like she is indeed home and getting on ok.....hopefully she will turn up here soon.....
rita I will write to you about my NOW living
Jan
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ooops! sorry, jan! i see it was jo who made that comment.
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Good morning ladies....hmmm, not a great one..raining again outside..but I'm just glad that it's not snow ( I think a bit could be in there later ) . I keep telling myself to have patience but then just think of that silly saying " Please give me patience, Lord, but hurry". Having several days of nice weather in a row is such a tease this time of year. I think Jo is so tired ( sure been there ) and meant to say that we don't know if lymphedema will show up but that you had made at least a hundred flights. It might never happen or might happen the very first time....just one of those things that makes us never quite the sameafter this disease and having to consider and institute lifetime changes.
Jan, I am interested in the NOW living as well. I have known for a long time that we tend to do so many things from the stand point of what occurred in the past and often mixed with what we think will be a problem in the future.....and so are not totally living and conducting ourselves in our daily --- new units of time. I think what I am saying here.....is that we sometimes make our life difficult since we are dealing with things not in a fresh manner but with information that is not current......and the future is not here.....what we perceive right now for the future may not actually even happen so we really do need to live right now. Well anyway....I am extremely interested.
I'll be checking back later.
Hugs,
Jackie
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Just thought I'd let ya know, my surgery is scheduled for April 21st. Don't know the time yet..They're gonna call me, something bout scheduling the wire localization..She's gonna do a lumpectomy, take out some nodes, (no dye either, says she knows where it's at), wack a mole off and if the onc okays it, take out my port!!!! Just thought I'd let ya know!
Hope all are well and doing ok!
Love and hugs
Deb
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I was reading in today's news that there is a surgery that works to help arm lymphedema. http://www.medpagetoday.com/Surgery/PlasticSurgery/13404
FWIW,
Jo Ann
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Lymphedema is not a death sentence and this thread makes it sound hopeless. I had lymphedema 23 years ago after a full axillary dissection where they took 32 lymph nodes!!!!! Yes that is how they did it then. I did exercises and used a compression pump and it went away about 22 years ago. I have not had any further problems with it and I simply do not spend time worrying about the "what ifs." So just remember that if you do get it, there are things you can do to make it go away. And don't spend the rest of your life worrying about it. Life is much too precious for that.
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Thanks, Jo Ann,
There are a couple of kinds of lymphedema surgery currently being tried in the U.S. One is the operation described in this article, which is being performed at MDAnderson by Dr. David Chang. It connects a lymph vessel with a vein in an attempt to get the lymph to drain back into the circulatory system. The two systems have different pressures, so the long-term safety of this method is still in question. (There are no long-term studies, and few short-term ones at this point). Even the theory of it is based on incomplete understanding of the lymph system.
The other surgery is a node transplant. Nodes are taken from the groin and transplanted into the axilla in hopes of restoring lymph system functioning. This too is an experimental surgery. It's been done in France on hundreds of patients, but the studies that have been done to follow up on those patients only include around 20 women, who were hand-chosen by the French surgeon. They show mixed results. Unfortunately, the surgeons currently doing this procedure in the U.S. do not intend to do follow-up studies on their patients either, so we won't know what the effectiveness or safety of this surgery is. What we do know is that some women have developed lymphedema of their abdomen following this procedure, which is not a very happy outcome. Leg lymphedema may also be a risk of this surgery, but we won't know that because there are no plans to publish those results.
Our StepUp-SpeakOut site has a page about both procedures if you're interested. At the moment we have emails in to Dr. Chang to answer some of our concerns about this procedure, and if you'd like I can let you know when we hear from him. Here's our page about it:
http://www.stepup-speakout.org/otheruntestedmodalities.htm
Hope that helps!
Gals all, I just want to tell you this: I've been working for several years teaching in-service classes about LE for nurses and nursing students, and making sure that doctors receive up-dated lymphedema information, as well as trying to get the word out about this condition to breast cancer veterans. The nurses are waaaaay easier to teach than the doctors, maybe because their career interest is in advocating for their patients. The doctors are slow to learn about it, probably because it doesn't involve either surgery or drugs, so it's under their radar. But by far the most discouraging people to try to explain this to are my dear bc Sisters. Denial is a powerful thing, and we've all been through so much we just don't want to deal with more.
There is not a woman with lymphedema that I've ever met, either on-line or in person, who does not wish she had paid attention to the simple life-style adjustments that might have spared her this distress. This is a horrible diagnosis, it is disfiguring and debilitating and it is for life. We are ALL at risk, this moment and for the rest of our lives. It is NOT a betrayal of "living in the moment" to give some thought to lowering your risk for a condition that can make all the rest of your "moments" darker than they need to be.
OF COURSE you should make up your own mind about all of this, and it should be the right decision for YOU. But it should not be made in ignorance or in denial. Have the courage to look lymphedema square in the face, and THEN make up your mind what you're going to do about it. PLEASE care!
Thanks,
Binney0 -
Mandy, we were posting at the same time. I'm so delighted for you that your lymphedema was the sort they call "transient."
You are extremely fortunate, because that is a very rare outcome. For the huge majority of us, this is for life -- and without constant attention and care it is degenerative in nature as well. For too many it is even disabling. Like you, I think it is not wise to spend even a minute worrying about this -- worry is a paralyzing emotion! That's why I'm so in favor of every bc veteran knowing the ropes where lymphedema is concerned and taking the simple steps to protect herself. You worry less about a house fire if you've removed flammables and installed a smoke alarm and a fire extinguisher. You can worry less about lymphedema if you know how to protect yourself from it.Just makes good sense!
Continue well!
Binney0 -
Barbaraallen,
Thank you so much for your info.............so sorry to hear that you had this happen. I am very surprised and disappointed that all my drs have not been more informative. Actually even the lymphedema specialist who is connected to MD Anderson said the same thing when talking about just having a few nodes removed. If you don't mind my asking ........... were you also with only a few nodes removed? Again I am sorry you are dealing with this and it makes me view this in a totally different way! Thanks for sharing your story.
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Hi, I am Linda, from Marietta, GA, turned 62 on Feb 16th and was diagnosed on Feb. 23rd with this crap called cancer. All of the posts have been very eye-opening being a newbie to all of this. Had my sentinel node and 2 others removed (all clean), during my lumpectomy a few weeks ago and was wondering if the wearing of the sleeve on any flights I may take in the future is applicable to me as well. No one ever mentioned anything about LE to me - at all. Thanks for any input.
Linda
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Linda - Welcome to our little corner of the world! You've found a superwomen bonanza!! However, this superwoman is late for bed! The joys of being on AIs - no sleep.
Gotta run...or hobble, in my case!
Susan
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Linda....Nice to meet you. Good for you to get thru your lumpectomy and biopsy. You too should have a sleeve. There is no way to predict who will get lympedema, or when, but this surgery and removing nodes that ordinarily drain fluids and foreign substances from the body put us at risk for the swelling. A compression sleeve worn during air travel or even hours of consistent use of the affected arm ( I recently remembered a friend who knitted almost every day and often had to wear her sleeve ) should keep you from having to worry about this. This is a life-long problem that you have now.
Now I should clarify that my friend did crafts as she needed to supplement her income so when I say knitted every day....I am talking for many hours throughout the day and in very repetitive fashion. If you are knitting mainly for enjoyment it is doubtful you would have a problem. Also my friend did this for 8 years ---- all throughout her cancer, but it still points to the need for a sleeve.
Hope you get a lot of sleep and plenty of rest too Susan. See you all in the morning.
Hugs,
Jackie
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Oh Pam, You're going thru such a bad time. I'm so sorry. I understand the way you're thinking. We've probably all thought the same way. I am a week post op surgery and while in the hospital after surgery, I thought many times I wanted to just pass away rather than go thru all of this. I believe it's normal.... Take care.
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Linda--welcome to our group. Drop in often--we all push and pull together.
Seasoned Chooks all--although my surgeon briefly mentioned LE, my onco never has. HOWEVER, you all have convinced me to get measured for a sleeve. I figure since we're going through all the treatment stuff, and pretty much taking a year out of our lives to stomp this BC, why take a chance on adding another problem? I appreciate all of your comments.
Nite all. Helen
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Thank you to all my new friends - it was something I was totally unaware of and now through your knowledge and sharing of same, I am once again more informed. I love this site and all of you truly wonderful, very special ladies. I have shed countless tears on this site since I joined in late February, 2009, laughed many times, and had my unbearable fear quelled many times. There are not enough words to thank you all.
Linda
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Hi ladies...Susan, Helen, Kmccraw, Jackie, Jan, Rita, JO, Maire, mother of 7: Surgery is over....4 nights in hospital, came home on Friday. Have been trying to catch up on reading. You ladies are busy!! Hospital stay was horrible. Mainly because of morphine----never want that stuff again! I can see recovery is going to be challenging, but right now I'm just wanting the six drains out!
Thank all of you for your prayers. I know that's what got me thru surgery with no complications. Pl.Surgeon said everything in the tummy was layed out perfectly. Rather than the 12-14 hrs previously stated, it ended up being only 10 hrs...
I hope everyone's life has been going good the past week. What a trip this BC!!
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Hi all....glad to here mikita is posting.
Just a little note about sleeve..I wear one for all flights. I've gone through therapy and found it very helpful. I had used a pump but it made me have swelling in chest so I'm done with that..thanks to Binney's advice.''
I have seen lympedema up close ...a friend has a severe case of it and it is so debilitating, I knew I wouldn't take any chances after all lymph nodes removed during mastectomy.
Whenever I feel the slightest 'fullness' I stop and do the massage that I learned. I also learned some exercises that help with lymph flow.
Welcome to all you new young ladies....I'm going to have to get all the names straight...I'll re'read ...the mindpause is bad tonight.
Really stormy weather today...I knew it was achy yesterday for a reason. Who needs weather reports. going to read some insprirational stuff before I sleep. Good night all.
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hi there...I had eight nodes removed over eight years ago...I have had no problems with
lymphendema...I never had a sleeve and I have travelled all over the world..so I count
myself as very lucky..but I still don't let them take blood pressure or blood from that arm..or any IV's. put into it...
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Welcome home Mikita....I was writing my above post just as yours came up....Hang in there. We'll all keep praying your recovery is quick and easy. Blessings. maire
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Hey Makita: Great to hear from you! You are right about recovery being a challenge, but look at the challenges you've already overcome...you are going to look back on this and see that, even in the darker times, you found the strength and plain old GRIT to climb the next hill.
We are all very happy to hear from you! Take care. Helen
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Welcome home mikita. Glad to see you are back. Welcome to the newbies. Hi to everyone and HUGS, Nancy
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Makita
So very happy to know that you are doing good after your surgery. I will pray for a speedy recovery for you.
I haven't been on here much lately, been at the hospital, my cousin Junior is in there.
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Hi Ladies
Just wanted you all to know that I am praying for each of you. Sorry I have not been here for quite a few days, My cousin, Junior, is in the hospital, and that's where I have been spending most of my time. That family sure could use some prayers.
Welcome to all the ladies who have joined in the last week, sorry I was not here to welcome you to our group, but please know that I welcome each one of you with all my heart.
Guess I better get up and see what I can get done around the house, since it has been a few days since I did anything here. Sure gets a mess in a hurry.
I will be praying for you all.
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Makita...welcome home. Didn't think much about it but I have heard others talk about the drains ( I didn't have any with only a lumpectomy ) being quite a challenge --- probably falling under heading "This too shall pass" and along with everyone else comes my well wishes for you and continued recovery prayers.
SoCalLisa, you are indeed fortunate and maybe you will never get lymphedema.....I hope and pray not. For myself....I chose the treatment I did to do everything possible to make this my one and only experience with cancer. I see the possibility of lymphedema as a part of that and just as I did chemo and radiation to keep from recurrence of cancer, I wear a sleeve to ward off the possibility of lymphdema. It is truly the easiest thing I've done so far and though I did wonder in the beginning " do I really need this ", I'd just as soon ere on the side of safety and take that one easy extra step.
Linda, I think you just described why we all hang around here. We are and certainly mean to be a comfort to each other, but also to share information and experiences that mainly happen to those who unfortunately get this disease process to live through. What a life-altering event. No one is ever prepared and for so many of us......we go for years for tests and get only good reports and a feeling of safety takes over --- when for sure, who knows....then suddenly WHAM, your it. I was in shell shock and still don't know when that passed. So this blog and all of you....became a lifeline and instilled a sense of comfort and completeness and it is ongoing.
Be checking back later. See you all again then.
Hugs,
Jackie
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Mikita! So glad you're home and that the surgery went well! It won't be too long and those drains will be gone, too. Hugs! Thinking of you and hoping for an easy recovery! Take care of yourself!
Rita
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Mikita - so glad to hear that you're back home!! It's amazing what we can go through...and they call us the "weaker" sex! Ha! We're tougher than a boiled owl, all of us! More happy prayers for a speedy and painless recovery.
Mother - I hope your cousin is surrounded by and comforted with our prayers. And, there are a bunch for you, too.
Gram - I, too like the "push and pull"!
And, you sweet ladies give me the "warm fuzzies"! (Anyone remember that 70's book?) I can't think of anyone I'd rather be traveling this bumpy, winding road with than you!
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