GRRRRRRRRR I HATE LE..........
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Newbie here needing advice. Lumpectomy in '09 and all nodes removed on the right side. Radiation and chemo and thought I was done. Surprise. Mets to lungs in '11 - stage 4. Had a great week in Florida in August. The 5th day on the beach, and suddenly, my right arm/hand became swollen to twice it's size. Fast forward to now - the swelling has not diminished. Some days, slightly better, but most days - skin is stretched so tight it looks like it could pop. I bought a compression sleeve online to wear at night,but it's a little small and it cuts into my arm and thumb so that I end up taking it off halfway through the night. My insurance will not cover PT - or lymphadema specialists, etc. I'm at the point now though that I need to get it looked at as I've noticed I'm starting to lose my fine motor skills in this hand - my primary hand, and it's becoming sore and achy. Advice? I see my oncologist this Friday and I can ask her to refer me to someone, but who? Will any physical therapist work? Will they provide me wiith a properly fitting sleeve and home exercises?Thank you in advance for any words of wisdom you ladies may have for me.
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KIRA
I have my first ( eval) appt. this Thursday. That sounds encouraging.Thanks very much!
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Surfdreams,
Please don't wear a compression sleeve for sleep--they're meant to be worn during the day, and can cut into the skin and cause a tourniquet effect at night. Also, you should be in expertly fitting sleeve and glove. With lymphedema, skin integrity is crucial--any break in the skin can lead to infection. And pain is bad. It's telling you this isn't working to your advantage.
You NEED lymphedema therapy, by a qualified therapist: Not ANY PT
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
And, your insurance doesn't get to cut you off from treatment, the women's cancer treatment act of 1998 says they have to cover lymphedema therapy:
http://www.dol.gov/ebsa/publications/whcra.html#.UHN72xitLqQ
Your right hand and arm can and should be reduced, and it will require lymphedema therapy--special massage and bandages to reduce the swelling, and then, compression garments and maybe night time garments or wrapping to keep it down
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Please show your arm to your oncologist, and if at any point it seems infected--that's a risk and a true emergency--and please get referred for proper treatment. This can be helped considerably, and you shouldn't have to live with it like this!
Please let us know how you make out.
Kira
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Kira. Thanks so much for letting me benefit from your experience and knowledge! I've now got several lymphadema therapists names to discuss with my oncologist this Friday, thanks to your link/list. Do you think the women's cancer act will apply to me since I had a lumpectomy and not a mastectomy? My insurance is legendary for denying everything and I've had to enlist the help of my state's insurance commission to get them to pay for cancer related tests and treatments. Don't ever buy Blue Cross/Blue Shield's basic policy as a self insured individual. Ugh! From what I read on the link, it mentions post mastectomy treatment only. I had about a 30% reduction due to the lumpectomy, and all nodes removed, but still.... it was a lumpectomy, not mastectomy. Thanks again so much for your information!
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Surf, they say mastectomy, but my you had a"partial mastectomy" which is the medical term for a lumpectomy. You qualify, and it's a shame that Blue Cross is fighting any of this, but good for you to get the insurance comissioner on your side.
Wonder how Blue Cross would like an article in pink October about how they make life even more difficult for a breast cancer patient?
When I worked for the rad onc's, all patients who were stage IV immediately got SSI and SSDI, just a thought.0 -
Surfdreams, what's important WRT the women's BC treatment act is the diagnosis, not the treatment. I've had a lot of surgical procedures (including Level 1 & 2 lymph node dissection) and radiation, but all were in the arm & axilla because that's where my BC was. The insurance company initially gave me a bit of grief about LE coverage, but because the cancer cells were clearly BC, they agreed.
There are two different diagnosis codes for LE ... one is specificially for BC related LE. It's important your MO uses that code and not the more general LE diagnosis code. KS1
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All good information. Thanks again to both of you for the advice. I know I qualify for SSI with my stage IV diagnosis, but I have a job at a place that I love, and for now- I want to work as long as I can and since it's not physically strenuous, I can still do it. I'm off on Fridays and that's my weekly chemo day so for now, it all still works. Using my right hand is essential in my job however, and that's why I'm getting reallly worried with the loss of fine motor skills I'm experiencing - need to do something about this. And then I read on the internet (I'm not a doctor - I just play one on Google), that this swelling can turn into fibrosis and infections then can result in antibiotics not being able to cross the tissues because of the hardness, etc. I think I need to stop messing around with it and get it addressed. Last year, my oncologist wanted a diagnostic mammogram instead of a routine mammogram because of my hx of bc and my mets. BC/BS insurance denied payment, saying that they don't cover diagnostic tests. That was one of the many claims I fought them for - saying that in my policy, it doesn't state whether they pay for diagnostic or normal - just says one mammogram is covered per year. Denied again. Insurance commission helped me to get them to pay. 2 months later, they sent a rider to the policy to all the women in my state covered by this policy to state that only routine mammograms are paid for and not diagnostic. Yes - very supportive to bc women, aren't they? I've had to appeal many many decisions like this, including all my tests which confirmed my mets diagnosis. I had to make the point that they were necessary due to a life threatening condition which made it an emergency in order for them to agree to pay (again, with the help of my state's insurance commission). I started to post on facebook the other day when I saw they had a link about their support for pinktober yada yada yada. I deleted my post a minute later as I decided that I don't need to call that kind of attention to myself on the website - at this point, they're paying for my chemo treatments, but they could make it very difficult for me again if they wanted to. Decided I'd better not stir the pot over a facebook post.
I love your tagline Kira! Great quote!!! You'e both been so very helpful. Thanks so much again
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surfdreams...I too have BCBS in Florida..what a crappy policy indeed. Hope you can get the help you need for that swelling it is miserable! Take care xoxo
Maggie
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Surf, the code for post-mastectomy lymphedema is 457.0, all too often it's coded as 457.1 which is "lymphedema, other".
There is a man, Robert Weiss, who fights for people with lymphedema--his wife has it, and he's helped women on this board. He is lymphactivist, and if you need it, I can get his email--he helped Tina get her garments covered.
I was at the onc's today: my regular visit, but boy is it hard to go there, even though I like her, and I was reading about SSI/SSDI in the waiting room magazine. You only get medicare after 2 years of SSI, although I wonder if they accelerate it. And medicare is notorious for not covering lymphedema garments.
You know, screening mammograms are covered due to the affordable care act--they HAVE to be--and this blue cross wants to deny medically necessary tests??? I had a copay for mine last year as it's still diagnostic vs. screening. I have Blue Cross also....
Surf, your hand can be treated.
Kira
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Kira - thanks for the diagnosis code. I wrote it down in my notebook for my oncologist. My understanding from the stage iv boards is that there is still a 2 year wait for medicare, even after getting SSI/SSD jumpstarted. The affordable care act requires that routine mammograms be provided. Mine was diagnostic, so it was denied. They can do that. My insurance doesn't want to pay for any diagnostic tests unless they relate to chemo - and prior to them determining that my cancer had gone to stage 4, the tests were diagnostic without chemo. I know. It's crazy. That's why I had to make the case that they were part of emergency treatment in order to finally get it covered. I was quite the mess. Newly dx with stage 4 and getting denied right and left by my insurance for some very expensive scans. I thought "i'm going to die and send my husband and kids into bankruptcy in the process". I was in a very dark place at that point. But enough about that. My puffy hand and I truly appreciate all of your information and your kindness. You've made all of my homework prior to Friday's appointment very easy for me. Thanks! 0
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Mags20487 - my crappy policy is BC/BS of Illinois, but it appears that Florida and Illinois shared the same crappy BC/BS policy. My condolences to both of us!
I should say that I'm sure BC/BS offers some very good policies as well - particulary to people insured in a large pool such as through work - but for a person buying their own insurance on the open market and only being able to afford the "Basic Blue" policy - it really is pretty limited. Don't plan to get sick with this policy and be prepared to be your own advocate!0 -
So sorry for all you are going through. I loved our State's Blue Cross Blue Shield Plan. We had basic coverage as a state employee. The big deductible was tough but once met they paid great and I never had any problems other than the garments. They always denied first for more information. The fitter said just about every policy did this here. I will say I hate AETNA....why did he leave the state. Oh less stress.
It's been almost two months and I still do not have my leg garments. SMH in disgust. I haven't worn my arm one today either. I have red blotchy skin that is coming and going. Next Wed. can't get here fast enough. Pray they figure out my allergy. I am really thinking wheat! My husband asked tonight then what will you eat. Good question. I was already picky.
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Question - Help: I have been considering myself bilateral this past few weeks being we are treating my good side arm for LE swelling.... I have an appt with my primary this morning (unplanned) because I have sleep apnea but never had a sleep study done.. I asked doc over the phone if I could get a sleep study - and he wants to see me in person... anyway the question: I am going to fight the nurse this time and not let them do BP in either arm but thinking she has no clue how to take a BP on the leg - does anyone know where I can find decent instructions on HOW to do a BP on the ankle or leg?
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I have been MLD compliant daily. Knees are feeling better, hoping to get more steps and maybe even try the treadmill today. Gotta get moving, pounds are creeping. Ugh. Just plain ugh. If it's not one thing is it another.
Also discovered traveling gives me anxiety - a side effect of the AI. Argh. So more pills to treat the side effects of the pill that is fighting to keep the cancer away. Hmm...
On a good note - Little Martha has been very happy in the cooler weather. I am sliding by with only MLD, no sleeve when at home. I do stretch lots while at my desk during the day.
I see all my doctors in three weeks - I think that is weighing heavy on my mind. Bet it always will. Outside of the knees and anxiety I think I am fine but it's that lab report that decides.
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Jo-
reassuring to hear that the feelings of anxiety and depression subside after ending the meds. I definitely will look forward to that
me, have been on them for almost 4 years and so eager to be told I can end them. I think if my doc tells me to continue longer, not sure my reaction but for now it is "wait and see what the most recent studies say"
all this for stage 0 DCIS is stinkie
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Just wanted to say YAYAYAYAYAY
- I went in to docs expecting to argue with the nurse like last time... this time I looked at her and calmly told her I have LE alert in both arms, so blood pressure has to be on leg or ankle.. She said, "OK, hmmm I have never done a BP on the leg before" Thank goodness, I looked on the net and found how to do it... I took off my shoe and told her I needed to lie down... then told her to find the pulse in my foot and put the BP cuff on my leg... She actually followed my directions and took my blood pressure ... HAPPY DANCE - Someone listened to me... -- 0 -
I got my flu shot at work yesterday. When I got to the nurse I said, "I have an issue, no needle sticks in either arm." So she got the misty-flu vaccine, shot it up my nose and all is well.
I haven't had to fight with people at my place yet. We'll see next time I have to go to the lab for a blood draw.
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Yahoo for GMA~~
someone listened and it wasn't even hard. Good idea to look up the how to on the internet, you were prepared
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GmaF, that's genius-level thinking to do that homework and go prepared to tell them how to do the leg BP.
Do we need a ready-to-print handout that explains, with illustrations if necessary, exactly how to take non-arm BPs and alternative locations to insert IVs? It would be great to have something like that in pdf format on step up, speak out, with a one-paragraph introduction that explains why it's necessary for those with LE or at risk for it in both arms. Has anyone ever seen such a document? Because if it exists and permission can be received, we can ask Binney and Kira and OneBadBoob to consider putting it on the Su-So site. Also, we might ask the vendors that sell the alert bracelets to put a printed copy with each bracelet shipped.
Thoughts?
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Carol, great idea. I searched the Internet and didn't find anything with images. Just How to...then forgot the info..thank goodness I looked at it before I left. LOL
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I had to do an oximeter test last night to see how bad my apnea is and noticed my finger tip is all red
.. Was I not supposed to do that test??? Am I gonna be in trouble??? Not in a panic... just wondering if that little oxygen sensor is also a NO NO for the LE??? 0 -
2 year wait for medicare, even after getting SSI/SSD jumpstarted.
surfdreams
This is true. In fact, at that time it is MANDATORY that you get it ( PART A ) after the 2 yrs. They dont let you opt out, and there is a monthly fee. Part A only covers hospitalization, mind you. I hear what you are saying abpout the BC/BS but I HONESTLY believe that if any of your DRs will write a simple RX note stating " medically necessary due to cancer " ( e.g. your DX mammo) it would be covered.
Please consider speaking to your drs about this .
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Carol, what an excellent idea re print out with illustrations for leg BP and alternative locations for blood draws. For draws I really wish they could use my neck like they did with the IV, as it was so easy. The foot sounds kind of painful, but as with the arm, it's probably all a matter of person doing draw. I have conceded to annual draws on "good" arm but have slight truncal LE on that side (no SN that side), so never sure whether I am being stupid or not. Thought IV in arm combined with hospital stay was too risky, so that's how I ended up doing neck IV. I always demand BP on leg. My LE doc had said I could do manual cuff on good side, so if they refuse leg BP that's my recourse. I fight the most over the BP because there's no reason why they shouldn't be able to accommodate that.
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GMAFoley, I had the oximeter put on my toe to do the readings. I am sorry ...but I didn't think of you when you said you were going for sleep testing the other day.
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Purple32 - my oncologist did write a note to that effect to my insurance company. It didn't help. The state law states that
" Illinois Law Mammograms - All individual and group health insurance and HMO policies must cover routine mammograms for all women age 35 and older. A routine mammogram is an x-ray or digital examination of the breast for the presence of breast cancer, even if no symptoms are present. The insurance company or HMO must provide for routine mammograms according to the following schedule: Women age 35 to 39 - one baseline mammogram; Women age 40 or older - one mammogram annually. For women under age 40 who have a family history of breast cancer or other risk factors, coverage must include a mammogram at the age and intervals considered medically necessary by the woman's health care provider. " I copied and pasted this from the website. As you can see, it is for routine mammograms. This allows my insurance company to deny diagnostic mammograms. I have the policy called "Basic Blue" It doesn't cover dr. visits (with the exception made that I can see a dr. while I am in a hospital as a patient, or while I am undergoing chemotherapy - as soon as active chemo/radiation treatment is done, it only covers one follow up dr. visit, and then no more). It doesn't cover labs or outpatient therapy or any diagnostic testing unless as part of emergency treatment. It's a very limited policy - purchased at a time when i had no health conditions. I'm uninsurable now, so no chance of changing policies anymore. People who have good insurance through their work don't realize what a great benefit that is!
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Hi surfdreams
Trust me , I realize all too well the difference between good and not so hot INS! ( Still fighting my so called good ins co. from May for a $2400.00 " copay")
Well, I see your dilemma. I am in MA. so the laws are different , thanks to Romneys Health bill here. I work so I cannot take advantage of any of the low income INS., but it does provide for pre existing conditions.I'm sorry- I didnt realize the state of Illinois didnt have laws fo cancer treatment or for pre-existing conditions.
I'm not trying to talk politics here. I just happen to be from MA. where nothing is perfect, I can tell you. I guess we all have to keep our eye on the ball when it comes to health ins . Can you fight thru your state ins commissioner ? I dunno'. I'm probably ading to your frustration, and I certainly dont mean to . It's just a whole different state I guess.
Good Luck in your quest for good treatment!
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Purple - you're not frustrating at all - many of us here are all in the same boat trying to battle for our lives while also battling with insurance companies over payments. It seems that if a person has cancer, they're better off having great insurance or no insurance. The people with the mediocre insurance will be in big trouble. There are many threads on this site dedicated to this problem and I sure didn't mean to hijack this one. I really do appreciate your trying to help. Thanks so much!
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I am watching your frustrations and battles with insurance... Trying to learn from the best just incase I ever get REAL insurance.... I would like a chance to battle the insurance rather than not having any... I am in debt to the hospital for the rest of my life because we fall in the mid-class hole - make too much to get financial aide but can't afford insurance...We had to quit getting insurance when they were charging us $1800 a month.. So I do have a label that makes everyone THINK I have insurance but they only pay $1000 a year..So I've been maxed out since my last surgery in August(my year is april to april).. I sure wish, for all of us that our financial frustrations could vaporize.. and we could spend our effort on healing and research... 0
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Surf, I read where you are at and wonder if I am heading in that direction. I am 63 1/2 and hoping to hang onto my job till I am 65 but not sure if the company will survive. Got ins now, not great as it is a very small firm. Actually when I joined the firm 16 years ago, I told them that they had to get health insurance if they wanted me to work for them. Well they did, now all these years later, I just want the insurance to hold out for a bit longer!
I have talked to an insurance agent for info on how much individual ins would cost and honestly your info is helpfulI do so hope you are able to work things out and get the care you need at a cost you can afford.
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surf, what about looking into agencies like Komen or others who might give free mammograms to underinsured patients. Try googling something like Illinois free mammogram underinsured.
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