Lumpectomy Lounge....let's talk!
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Gardennerd- as a nurse i can tell you - you are your very best advocate. Don't be afraid to let them know you expect better communication. This journey is hard enough without having surprises that could have been avoided. So glad they waived the fee - those financial surprises are definitely not fun either!
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Gardennerd, sorry your MO didn't take time to explain the test. This journey is full of enough twists and turns that you don't need your doctors adding to it. Hang in there.
Kim, I admire your positive attitude and sense of humor. Keep it up, it will see you through this. Definitely plan short trips or treats for yourself. Sending positive energy.
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gardennerd- the lab that did my onco test contacted my insurance for authorization before doing the test. The lab that did the brac test also got prior authorization. Then they did a more comprehensive test and billed me $2,000 for the extra part since insurance only covered what was authorized. My b.s. said I didn't have to pay it - that they try this move on everyone.
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~Gardennerd~
My BS ordered my Oncotype test and neglected to tell me as well. She actually sent in tissue samples from both of my biopsies. My insurance refused to pay, stating it was unnecessary. I panicked when I got an EOB (Explanation of Benefits) for over $8,000. The testing lab contacted me and discussed what the test was for and said they would work with my insurance to get as much paid for as possible. Long story short, the insurance said NoNoNo and I qualified for some kind of grant based on my income and I didn't have to pay for any of it.
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I hate insurance companies saying no no no-- I am not sure how they can decide we do not need something if the doctor a cancer dr at that says we do need it . I guess they would rather we have unnecessary chemo! I know if it was not for the Onco DX test I would have had chemo- My MO( I fired him) told me because of my age at the time of DX- I was 44 that I would need chemo- had me get chest xrays- additional blood work- I met with a woman who coordinated a study with the mayo clinic in which they take away one of the chemo drugs and watch you for reassurance. I asked that MO what would happen if that trial did not work- was I just dead then? His answer was --- Pretty Much,,,,,, Once I woke up out of the nightmare- I asked for the Onco DX test - My niece DX at 33 two months before me had told me about it. My MO said===Oh you want that? ---- I wanted to say NOOO- I want Chemo and to be on a trial just cause I qualify for it- grrrrr... I fired him and my sister who was DX right after me- Fired him as well.......
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I had the oncotyping as well...my MO said it would determine whether I needed chemo or not. I was fortunate, as my test came back 14, with a 9% chance for recurrence. I'm going to assume Medicare will pay for it. I'm still SLOWLY getting EOBs from our secondary insurance (just got ones from April 17) and the Medicare Summary Notices haven't caught up yet either. When I get them, I try to go over them and match them up between Medicare and secondary...it's a big puzzle. I guess I shouldn't be so anal and just put them all in a folder and then worry about it if I start getting bills.
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I asked about the OncotypeDX test before my surgery, and the NP said we'd cross that bridge when we come to it--that it isn't done unless the tumor turns out to be in a gray area (any one or more of: >1cm, 1-3 nodes positive, Grade 2 or 3); because if it's tiny, node-negative and grade 1 or 2 chemo would almost certainly be unwarranted; and if it were >1.5 cm, 4 or more positive nodes, Grade 3, PR- or any combination thereof, chemo would be a given. This is because it is a $5000 test, and isn't always fully covered. I turned out to be in the gray area: 1.3cm and Grade 2. Luckily, my insurer at the time (not yet on Medicare, United Choice Plus PPO) picked up every penny, as it did the genetic counseling and mutation testing due to my ethnicity. And even better, it reinforced both my desire to avoid chemo and my MO's prediction she wouldn't recommend chemo. And considering the cost of chemo, that five grand was a wise investment for United Healthcare as well. Not sure whether for those on Medicare, Part B alone pays the full freight or one needs a Part B supplement to avoid a co-pay.
Kim, I know it doesn't feel real, and then it's all too real. As a NorthShore patient, you're welcome to come to our support group meetings at the professional bldg. across from Evanston Hospital on the second Wed. of each month, 7-9 pm. Most women who attend have had or are undergoing chemo, all radiation, and some mastectomy as well.
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Ladies you are so great. I agree we should be our own best advocate. This oncotyping caught me by surprise and your replies put everything in prospective. I so hate this for those individuals that have not found support such as this group. Never understood the billing process of insurance. Doc bills for $800, insurance pays $400, a large percentage is waived and then I get a bill for say $80. And no bill is itemized? . . . just pay this amount for service this date. For that matter, why not waive my piddle amount : )
For me I have one group that handles pathologist billing. I keep getting a bill stating the insurance company denied. But when I inquire with insurance they didn't deny (so to speak) they just advised billing company to get their paperwork straight and then they would pay. But do you think the pathologist billing would do that? No they send me the full bill. So each time I get a bill I have to call and instruct them what to do. So far I haven't seen their bill refiled with insurance, nor have I seen any further billing from the older stuff. Hmmm? I wonder if they waived me ? nah, couldn't be so lucky . .. it'll probably show up on my credit report next year, ha,ha.
Oncotyping sent me release paperwork so I could get a copy sent to me also (my request). They said approximately two weeks for results My next oncologist appt. isn't until August, so here is the test. Will oncologist call me with results? or will he wait?
Thank you all for being the good souls that you are ladies.
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My MO sent me a patient portal message the day she got the ODX results. I'd find it unspeakably cold and cruel to sit on them until the patient's next appointment.
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Sandy, I did go to a support group last night. It went well. It's a little bit far - 40 mins without traffic - so that worries me if I will have the stamina once treatment begins. I appreciate your invite, but yours is even farther. There just wasn't one that I am aware of closer that was all ladies. I think having all ladies works better for me at this time.
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Very frustrating how insurance wants to dictate our care.
Gardennerd - I agree with Sandy ..... you absolutely should not be waiting until August for those results. My BSO schedules an appt to come in for all results. I had my bx and went back 10 days later to see him for all of my results and treatment plan. Stay on them.
LX question - how long does this "sloshing" sound from the seroma last?
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Trish, Congratulations on the good report...
Poodles, Happy to hear Christian has a caregiver..
I see my MO on the 16 for my first mammo and second followup.. I don't have a BS anymore, if I need one, the MO will recommend someone for me.. I haven't heard from my RO since my first followup... so for now.. just one dr. to work with, and praying for a good followup
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Insurance is confusing. I always have my Well Woman in May and insurance always paid 100% -that was labs, gyn & mammogram. I got a bill today for $200+ for labs, so I called the insurance and was told Well Woman doesn't apply because my PCP isn't ordering the mammogram-BS is! What?! I reminded them that they okayed the bone density as part of Well Woman and that is ordered by MO. Yes, but through PCP! What difference does it make? There is no point in asking BS to have PCP order mammogram. She has her own agenda. Sometimes I wonder who's body I inhabit-BS, MO or insurance company? It certainly doesn't feel like mine any more.
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Been several days since I've been here - lots to read. But I will weigh in the nail issue. I had "chemo lite" (Taxol) following LX and partial breast radiation but had pedicures and gel nails the whole time. I have had acrylic nails for years but they wouldn't "stick" after chemo started but the gel was fine. My nail techs never cut - just buffed. There were tub liners which are discarded after each client and tools came to the tech in sterilized packs. Some people do bring their own tools and polish but I think they sterilize stuff better than I would. My friend lived with stage 4 for 5 years and got regular pedicures with her trusted technician. Get references if you haven't gone before. My dentist cleaned my teeth 4 weeks after I finished chemo but did have me take penicillan before. I also just had permanent make-up for my brows. For some reason loosing them was harder than my hair. Wish I had had enough time between the chemo decision and the start of chemo to have them done before things got exciting.
Happy Weekend everyone. Hope you feel well enough to do something with someone special.
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ML, I remember hearing that sloshing the first week post LX, but I realized yesterday, 2 weeks out, I wasn't hearing it. Maybe I have tuned it out or maybe it's really gone. My SNB scar is looking really well! The breast scar looks good, too. I still have tenderness, though, but it is improving daily! I have ditched a bra at night. I even for very brief periods turn over on my right side. I used to love sleeping on my stomach, which I know is horrible for my back, so I guess that will be out for a very long time.
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Kimpossible- So glad to hear you are healing nicely. Oh how I would like to ditch a bra. I haven't slept a full night in bed since surgery but I keep trying. My back hurts when I lie on my back for any length of time. I can't stay in that position long at all. And it was never my position for sleep. My preferred way to sleep is on my stomach also. Last night I went to bed with intentions to try it. And I was able to pillow up and lie on my stomach. I put a small pillow under my right upper arm to hold up my shoulder and sort of shaped my head pillow down toward left breast. I guess a better way was to say I gave my right breast a pocket to rest. It felt so good I literally felt my eyes water up. My BS on our last visit said it was all a matter of comfort now. I could sleep with bra or not and I could sleep in any position. That comfort thing will come for us.
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ChiSandy- Thanks for the breakdown on OncoType DX regarding size of tumor and node involvement. The reading from their site and physician material I ran across just muddied up my brain so much. I hate it that sometimes there is not much transition from laymen and over my head data. I cannot make the leap.
Have you run across any info on the hormonal therapy as far as medicine dosage paired with grade/size/type of tumor/age/body weight? It appears the dosage is rather generic in dosage and yet we all have varying size of tumors removed/various types/different ages/different size of bodies, etc..
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Gardener - I'm a stomach sleeper to and the first few days I spent on the couch. I just couldn't get comfortable in the bed. My DH slept on the floor beside me even though I said I was fine for him to go to bed. When I was able to sleep in the bed it felt so good! I figured out I could take one of the little neck pillows ( you know the one shaped like a toilet seat) and put it under my surgery side breast. I still do it occasionally and my surgery was February 7th.
Now for a question for my LL girls, last night I woke up at 3 am because my right leg felt like someone had pulled it hard! The jolt of pain pulled me to a sitting position. It didn't feel like a Charlie horse it was different. I could move for about a minute. That leg is very sore today. Just curious could it be the tamoxifen? ? I have been taking tamoxifen for 3 months and have had no noticeable side effects. (Other than no monthly cycle)
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Thank you for posting about the nails, this was something that had crossed my mind. I was diagnosed with breast cancer on 04/20/2017 and had a lumpectomy, lymphnode removal on 05/19/2017. I'm currently waiting for my results of the onco type to figure out if I'll be proceeding with radiation or chemo. This is all new to me and I'm just so full of questions. This forum is great!
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TexasLadyBug, Welcome! You'll most likely find all the answers to your questions right here. This is the best forum on BCO (and I am definitely prejudiced
). If you want lots of information, I recommend Dr Susan Love's Breast Book. It tells you most everything you could need to know and then some. Also, while waiting for your pathology report and Oncotype results, you might want to complete your profile (including where you live) and then go to the SETTINGS tab and make each and every item public. That way we don't have to wonder about your diagnosis, treatments, etc. As you can imagine, we have a hard time remembering that vital information. Ask your questions and we'll be glad to answer!HUGS!
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Texasladybug, welcome! Sorry you have to be here. But, I agree, you have found the best forum to help you through this journey. There is usually someone here who can answer your questions and everyone is very supportive. Positive thoughts to you for a low onco score.
Vargadoll, not sure what could cause it. I get Charlie horses, but I can't say they're from the Tamoxifen. Hope you don't have anymore. If you do, maybe check with MO.
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Texas, welcome. (I abbreviate handles here for the sake of brevity and my sometimes-misbehaving fingers). My nail tech observed that her clients who have had cancer--whether chemo, radiation or not--tend to develop more ridges & white spots and in retrospect may have done so before diagnosis (maybe keep an eye on your nails and if they worsen, call your MO). My nails do grow very fast so that the gels sometimes lift between manicures and need gluing back down. Also, travel is very hard on the tips--rooting around in luggage, packing, catching them on things while manipulating tight spaces on planes, schlepping suitcsases onto & off shuttle buses, etc. I already had to clip one nail on my R hand because I didn't have any repair stuff, couldn't file away the chip & notch, and if I left it alone it'd both snag my clothing and the vertical split would grow.
Varga, I get charley horses and have for years. Mainly shin, calf, foot and especially toe cramps. (Shin particularly because of the hardware in my tibia). I take magnesium at bedtime and (for some reason this "bubbe-meisser" works) a bar of soap (one of those I bring home from hotel stays) by my feet beneath the blanket helps but not always. As painful as it sounds, movement, especially walking, gets the muscles to stop twitching faster than does anything else. Orange juice (gets into your system faster than a banana) & salted nuts can give you a boost of potassium & sodium, which can temporarily realign your electrolyte imbalance.
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TexasLadyBug - So happy you were able to find this forum. The ladies here are absolutely the BEST. How are you doing?
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thanks ladies! I drink lots of water and try to eat a banana a day. I have never felt anything like it before and my calf muscle is still very sore.
Welcome Texasladybug! The ladies here rock! I'm a newbie so I'm in the learning phase!
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KimPossible-- I have my chemo port in my arm and I absolutely hate it!!! BUT... I am a heavy woman, with pudgy arms and significant "side boobs." The port is on the inside of my upper arm, and the port bump is always (and I do mean always) rubbing my side boob. It also rubs all sorts of other things, like when I'm at the drive-up teller or a fast food drive-up window. My port bump rubs on the car door and it hurts. And it's always bruised from rubbing on something or another. I'm paranoid that i'm gonna rub it so hard--just when doing something as simple as sitting in the recliner and reaching to the floor to pick something up--I'm afraid I'm gonna flip the stupid thing inside my arm, even tho the surgeon tacked it down. Ugh! hate hate hate!!! But that's just me.
And everybody says when you have a port, they'll use it for all sorts of blood draws and tests (like MRIs with injected contrast dye) and stuff so they won't have to stick you in your veins. But so far, NOPE! Nobody wants to deal with it. I have only one decent vein for blood draws in my entire body, and wouldn't you know, that's the arm they put the port in, and you can't use a tourniquet with the port, so they can't use that vein. So now I have to deal with everybody digging around in my other arm, searching for non-existent veins. Also, you can't do blood pressure tests in the port arm, but that's no big deal.
The breast surgeon said lots of women really prefer the ports in the arm. She said the scar will be hidden. Plus she could insert it in her office without general anesthesia or anything, just local, and it would save me from having to go to the hospital's surgical center again (I've already had two surgeries recently, and i was in no hurry to go back).
So, I would say, if you have fat arms and side boobs, put the port in your chest! LOL. I complained to my BS about it and she had no sympathy! She gave me some lame-ass reasons (well, they were probably legitimate reasons, but I didn't much care at the time) why she refuses to move it to my chest. I called her a mean doctor. It did not move her to sympathy. She says I'm stuck with the arm port, and I'll just have to learn how to deal with it. UGH!!! Mean, mean breast surgeon!! (actually, she's funny as hell....unless you want your port moved!)
I'm sorry for the negative review, but thought you'd like to know some things to consider. As much as I hate my port, I know it's totally necessary. BTW, I've only had it less than 2 months, and only 1 chemo infusion so far. OMG, you should have SEEN the sizes of the bruises I had when it was healing!!! Impressive.
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~Gardennerd~
Like Vargadoll, I used a pillow on the surgery side to help me sleep. I was a right-side sleeper and found it too uncomfortable after surgery and during radiation without some support. I used a standard size pillow because my breasts are large. I was able to actually lay the breast on the pillow and roll into it to sleep.0 -
Sandy, I think I had mentioned before I don't get manis, just pedis. I just looked at both of my thumb nails, and they both have really pronounced ridges! When I look at the other fingernails, some are smooth and some seem more ridged than they used to be. Very interesting!
NCBeach, First, I am truly sorry you hate having the port in your arm for all the reasons you described. I truly am.
Fortunately, I have no "side boobs", so I am just going to stick with the plan to get it under the clavicle, as was described. I spoke to a lady yesterday who's staging/type/treatment, etc were nearly identical to what I am facing. She didn't get her port out for two years, because they wanted to leave it in "just to be sure." Ok. That literally took my breath away. No one had mentioned that. Mind you, I am not reading much. Can anyone testify to this? Is it that it is not possible to put it back in if, Heaven forbid, you need more chemo later? Ugh.TexasLadyBug, Welcome. A fantastic group of ladies are here. They have been so helpful!
A friend just sent me a handmade pillow today, similar to a neck pillow, that her sister made for me. She said when her mother had her lumpectomy many, many years ago, she had made her one. She asked me a couple of weeks ago my favorite color, and that was why. I wish I had had it two weeks ago, but I still at times need to keep the arm at bay, and so I can still use. And Heaven forbid (again) if I have to have more lymph nodes removed, I will surely need it. I don't think I mentioned (or if I did forgive me - I think chemo brain is kicking in before I even start!) that my ONC replied to a couple of questions late yesterday. She said my BS and she are meeting with the tumor board on Monday and will confer if I need more lymph nodes removed. I look at it like this, if I do to make things crystal clear to my follow-up treatment protocol, then by all means figure that out right now! The thought of going back into my pit area is just too much right now, plus I am ready (not as in eager but ready to start so I can finish)!!! I do have a date set, and I would assume they wouldn't take more nodes without pushing out my chemo start date. I am trying not to let it overshadow my weekend. What will be will be at this point. I will be sure to let y'all know.
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Regarding pillows . . . the day of my surgery I needed I had wire localization pre-op. A nurse asked me what my favorite color was and then opened a door to a huge cabinet full of handmade pillows. Its somewhat shaped between a neck pillow and a heart shape. I told the nurse I'd take anything that didn't look like others would like. She gave me a pillow with fish on it. And it tickled me so as I love to fish. I used the pillow immediately as I am large breasted and the breast ached. So it was a prop underneath my breast for the entire day. Afterwards and even as I type it is used under my arm to ease the discomfort on the SN incision.
This is a long way to say that the nurse told me that a group of women make these pillows and donate to the breast center. It is a treasured and well used gift.
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My port is in my upper chest on my non-LX side. My MO's office uses it to do blood draws but my local lab (where I get my labs for my primary's physical) won't. Haven't discussed removal as I have 8 more months of herceptin. I've met a number of women on my cancer journey that keep them in. My immediate thought that I will leave mine in too if I have a choice - it wasn't fun to get it and it now gives me no problem. Just one more surgical procedure. I know I will need to go in and have it flushed if I keep it which may be more of a hassle than I am currently anticipating. But my MO's office is less than 3 miles from my house too.
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Texasladybug - Welcome to our Lounge!
Gardennerd - A local church makes pillows and donates to my breast center, also. Used it in the same way you described, plus underneath seat belt to "cushion". It was a godsend!
Took awhile for me to get to the point where I could side sleep with a pillow supporting surgical breast. I still start out on my back with a pillow on each side, supporting each arm.
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