Exchange City
Comments
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Blondie.. you INSURANCE would not pay for your healthy breast to be removed... OMGOSH! I thought this was, somehow, illegal.
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Estepp - I wish I could say that it was but I guess not. I feel so much like my insurance dictated my care through this entire process rather than my doctors. Although I have a GREAT doctor and am happy with him I have a cancer center 5 miles from my house. Unfortunately I could not go to this center as it is not covered by my insurance. My closest options were a 30-minute drive either direction from my home. My mother had very early-stage breast cancer 3 years before mine was diagnosed and had the same insurance as me, so I knew I could not go there as even though she filed a hardship, they turned her down. Thank goodness my mom's bc was caught VERY early and she had lumpectomy and 1 week of 2x day rads and she was finished and is doing GREAT. I, unfortunately, made the mistake of thinking my treatment would be just like hers. Boy was I mistaken and have learned so much since my diagnosis in April.
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Blondie: I would love for you to go to Milwaukee and see John Hijjawi, M.D. for consultation.
http://www.mcw.edu/cancercenter/research/BreastCancer/JohnHijjawiMD.htm
I hope you are in close proximity....????
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Ladies we have rights--below are federal rights, each state has their own version as well.
http://www.cancer.org/docroot/MIT/content/MIT_3_2X.asp
insurance companies who provide mastectomies are required to provide reconstruction that includes symmetry. I'm also pretty sure that if you request a BLM to obtain symmetry your insurance company is obligated. I'm sorry Blondie that you had this experience. It look like Deborah has found a great doc for you.
Geena--You have been sounding really great lately, I'm so glad.
Cheri--You are a running inspiration, just like Sandy has always been.
Welcome to the new Sisters!
Hugs--Karen
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Blondie - My expanders were placed 3 years after rads. So R Breast cancer with surgery and rads in 2006, L Breast cancer with surgery in 2008, then R Breast cancer again in 2009 resulting in choice for bilat mx with immediate expander placement in 2009. My radiated side has struggled more - you can see pics on the picture forum (private message a member named Timtam and see if she will register you). My name is Wabiwoman there too. Long and short - I have had struggles, but it is not impossible. Some women have an easier time, some harder. I'm due for my exchange to implants soon - I know for me if the expander/implant option doesn't work I'll most likely "go flat" -- but I'm still hoping for decent results.
Keep asking questions - I think there are a number of unilateral mx women here - some of who have had rads - who can talk to you about symmetry. Would your insurance not pay for a "lift" for the intact breast to match a reconstructed breast?
Anyway, you've come to the right place!
Geena
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whippetmom - Thanks much for the name of that doctor. He was one I would like to see whenever I figure out how to get referral to go out of network. I haven't quite researched all of my like 6 choices of doctors in my network but I am possibly thinking none of them do the DIEP but I am not sure.
wabiwoman - Wow you have gone through a lot. I have read that they insurance company by law has to pay for the lift on the other breast also. I am just starting this part of my journey looking into all my options.
Keep all the information coming, I appreciate it!
Dawn
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Thanks KEW! Not too sure I am in the same league as Sandy but I keep trying!!
I have officially signed up for my first tri!!! It will be March 27th! I am very excited because I had to drop out of this same tri last year after being diagnosed. Somehow this race in my mind is tangled up with BC and when I complete this tri I am kicking BC's booty!!! (wish me luck!) Lance is right- it is NOT about the bike!!! 0 -
Once the insurance companies took a big hit (post AIG) some of them including CIGNA and AETNA started to refuse (even post approval)to pay for the mast on the healthy breast, even though they would be required to pay to have the healthy breast brought into symmetry.
I think this was done to created what we lawyers call a chilling effect. Where there is a family history a prophylactic mast can be medically indicated,I think the companies are doing this because the bean counters know that the experience is pretty traumatic and a large percentage of women who go trough the uni experience may be so emotionally beaten up by the whole thing that they wont go back and remove the other breast.
I did not think they would stoop so low,till my Dr told me about a woman who was approved and the day before the surgery the insurance company called the hospital and pulled the approval for the surgery on the healthy breast. In that case it was really horrible, because she would up canceling the whole surgery to appeal the insurance company decision. Which of course endangers her life.
The reality is that we cost the insurance companies more by surviving. When I look at these occurrences and the guidelines by the independent advisory committee (who I am sure have ties to the insurance industry) and their guidelines they proposed on pap smears and PSA tests I really have to wonder if survival is under attack. I don't think its governmental (the advisory com was appointed by Fmr Pres Geo Bush) I think it really is the insurance industry looking to save money.
The place where I do blame the government is in the lack of research funding. If all research dollars are private sector drug company dollars they have no incentive to find a cure, it puts them out of business,but if we encourage more governmental funding for research than maybe we stand a chance.
Ok, I'll put my soap box away,I just get so ticked when insurance companies are allowed to direct our care.
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That makes me so glad that I had the prophylactic when I did. My BS said he'd write a letter to the insurance company if he had to (he didn't) to justify the surgery.
I looked at both bra fitting sites, and according to their techniques I'm now a B cup instead of my former C cup. So far, not as full as before. But what was strange is both websites said my band width should be 2" smaller than I've worn my entire adult life. If I went 2" smaller, I'd have trouble breathing!
Does nipple surgery affect projection at all? I'll be having the "origami" with alloderm for stability.
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Karen - How are you? Your shoulder? Your work load? I know you had a bit of a vaca from school and I hope it was restful. I spent this morning doing some writing/meditation/praying about next vocational steps for me -- so many options -- so much confusion! Ah well, answers always come. I'm thinking of you!
Cheri - What? Tri-athalon? I feel like such a wimp. My body actually shrivels at the prospect. I admire that sooooooo very much and love, love, love the fact that you'll be showing BC who is boss in March.
Dawn - You'll be amazed by some of the stories here - what women have been through - actually, I think my challenges have been mild in comparison. Still, a struggle is a struggle and definitely I found getting as much info as I could, asking questions, taking action was really empowering. Don't get me wrong - I cascade into the "poor mes" and exhaustion/depression/ weepy/ lonely place - and I've come to just accept it as part of the BC ride - but yeah, taking action really helps.
Must go sit on the stationary bike at the gym now, and not bounce. This is a challenge.
Geena
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Cheri---Good luck in the tri, my son (16) did the running portion for a team last year and it was a great event. You go kick cancer's #$%@! I just signed up for my first 1/2 marathon on 10/10/10--two years almost to the day that I was dx'd. Looking forward to it, but it seems a long distance to me!
Wendy--I love what you wrote, well not the reality of it, but that you shared it with us. I have Atnea and think I have been really lucky, I've seen women on the boards who they gave a hard time to about Oncotype and other things, so far, I've had little heartburn due to insurance. I think you may be right, that surviving is being challenged.
Geena-- My shoulder is much better since I got the Tens unit from the PT, not back to normal, but getting better and can use the rowing machine again in the gym. I'm excited about school this quarter we are learning theory and data analysis (which I have a head start on). One of my instructors talked about how there are currently 18% more people needing MSW or LCSW, and there are fewer people going into the profession, and even fewer going into oncology SW and that client population is growing--as we all can attest to. We had a big discussion on burnout, which you know well, I can see it will be a great challenge and don't know if I will be able to protect myself from it. I have a meeting with the one adjunct faculty who works much the same way I hope to and she told me there is a group of Portland social workers focused on oncological issues that meet, so I hope to connect with them. Yesterday I went to a wildlife refuge and did some hiking and birdwatching, it was great. I'm miserable in my job, grateful to have it, but looking for something else to get me through school. The fact that you are open to a new path means it will present itself, you are doing all the right things to allow it into your life. I think of you, too! Have a great day.
Jean--I hope things are going as well as can be expected with your mom and that you are taking good care of yourself.
I hope everyone who is/has been experiencing the big freeze is doing well. Have a great week and good luck to Fairportlady--thoughts and prayers.
Hugs--Karen
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bigapple09 - I am EXACTLY as your friend then, as I was told also the day before surgery that my insurance company would not pay for the breast that was shown to be healthy on MRI to be removed. I am so consumed in thoughts about this and it really bothers me that it was not my decision to leave the healthy breast but all my insurance companies. I think I would physically feel better if I had them both off at this point instead of feeling so lopsided even though I am not that big. Because they wouldn't pay for the healthy breast to be removed I am also wondering how long the process will be to get another procedure, i.e., DIEP approved if there are none in my network that perform that surgery.
Geena - yep there are days I also get angry and down and keep asking why me, but most days I am too busy to let it get to me with my job(s), current followup therapy and doctor appointments, and doing research on my reconstruction possibilities.
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Blondie: I PM'd you. None of your in-network docs appear to have DIEP or breast microvascular surgery experience.
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I wonder if someone can help me.,
I am getting my exchange Feb 10th. I had a double skin sparing, aerola sparing mastectomy.
the DCIS was on the left and I had two lymph nodes taken out. My left expander is falling a little so I have to wear a push up bra to hold it up until surgery.
I am 5'9, weigh 155. My rib cage is 31 inches. I have 133MV-13 Naturelle Allergan expanders in. Their capacity is 400cc
I am filled to 560cc.
I was hoping to be a big C and have some projection.
any help or advice would be so appreciated.
NWF
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Geena and Karen- thanks so much. My BMX surgery anniversary is March 17th and it is odd but during this training I have actually ended in tears- one day I ran 5 miles crying the entire time!!! It has been a strange journey but I really have equated it all with cancer. I feel like I am showing cancer who is boss and it is so freeing. I am over the crying hump of it all now and am just plodding along. Karen, there is something so cool about your 1/2 being on 10/10/10!!! I just love that and the fact that it is close to your anniversary is all the more special. Just look at it this way, just about anyone can run for 10 miles!!! (for some it might hurt more or be slower than for others but it is doable). So it is just 3 miles more than that and if you have to walk it, so be it- at least you will finish!!! Good Luck!!!
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sunnyhou: Your TEs are 13.0 cm wide by 5.6 cm projection. Your PS has overexpanded and so while your width remains the same, the projection is likely around 5.8 cm. I do not know what is in his mind about whether he will go considerably larger than the 400 cc's - as I do believe you will want at least 500 cc's in the Allergan high profile smooth round silicone implants - 550 cc's preferably. You would have a width of 13.0 cm width and a projection of 5.2 cm, or 13.5 cm and a projection of 5.6 cm. respectively. I would push for the 550 cc's in the high profile range - which is Style 20.0
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whippetmom - thanks for researching that, and that is good actually since then I should be able to get a referral to see one of the docs in Milwaukee that marejo had such good success with for DIEP. I want to reserach both options at this point. I am really in no hurry to get this done. I am just thinking I want something done some day.
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My exchange is scheduled for 1/20 and I'll be discussing implants with my PS this week. I'm excited about the next step but a bit apprehensive... The TE's were not placed well (by another PS)... one is higher than the other and they are both under my armpits. And of course there isn't much projection. I'm a bit smaller on the left as more tisue was removed (cancer side) but PS says he can even them out a bit with different size implants. PS says I will likely need a procedure for revisions later.
Any advice on selecting implants would be appreciated! I'm thinking cohesive gel (Allegan 410?). The TEs are Allergan 133V 400cc filled to 480cc. I'm 5'7" and 145# with smallish upper body 30" band and used to wear a 34C. I'm measuring 36" with the TEs but much of that is under the arms and I'd prefer not having it there.
I'm getting drains again
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cheri2,
You are an inpiration. I can't picture myself running 10 miles but you never know. I did get on the floor yesterday with some ankle weights and did leg lifts, then calf raises, squats and sit-ups on the ball. It felt so good to move again. I even did 30 minutes on the elliptical today, not making it an intense workout but just to move. I can't wait to get the go ahead to work with weights again. Three surgeries in less then a year have taken a toll on muscle tone.
I signed on to Sparkpeople.com to track my nutrition. Has anyone else tried that site? You can enter your current weight, your desired weight and the date you would like to reach your goal by. Then it gives you sample menus but you can change the foods to your own choices and track your calories, fat, protein and carbs. I entered that I want to lose 7 pounds by my 46th birthday, April 2. See, now I told all of you so I have to do it! I've been trying to lose those 7 pounds for the longest time and the scale always stays the same. Maybe this will work.
Cheri2 - Keep us posted on your progress for the triathalon!
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A Storm:
I just had an implant removed (MRSA following a burn long stupid story) and they placed a drain, it actually did drain a little, not a lot and they thankfully removed it while I was in the hospital (I was in for a few days).
From what I was told it was to reduce fluid accumulation which might interfere with healing and to reduce the risk of a seroma.
This drain was actually pain free, which was ironic since it was on the side that I found it to be very painful the first time, and for some reason, it was not nearly as annoying.
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Storm: There are several different variations of the 410s to consider - short height, moderate height, full height. But as I mentioned on the "101" thread, most surgeons create and expand the pocket specifically for a certain style and weight/size of cohesive gel implant. At least, this is what they SHOULD do. However, in your case, you had a PS who probably did not have that vision and it seems, had no vision at all which is why you switched surgeons. But if your current PS is a 410s clinical trials doc, he should know what would work best for you. That said:
You need to find out the "height" of your TEs. Are they "SV", "MV", "FV"???
I am a little confused about your ribcage measurement. Is it 30 inches?
You also will want to research the cohesive gel - gummies - because they are just not for everyone. You either love them or hate them. I think they work beautifully for some but not so much for others.
We can help you with 410 sizing once you obtain the additional info.
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Deborah - I am hoping you can help me. Last summer I had my exchange and let my PS decide what size implants to use. I told him if he had to, to error on the side of bigger rather than smaller. What I ended up with was Allergan 15 610. The shape is really nice and he did great pocket work but I wish I was larger. I am not a petite gal. I am 5'9" and (thanks to chemo) ~190 lbs. When I took my measurements I was only an A cup. However, due to the with of the implants I require a 36 D bra. My ribcage is 35. I had an apt. with my PS last week and asked him if he would be willing to go larger. He was willing to go larger however my choices are 700's or ~750's ( I can't remember the largest size but it was mid 700). I would love any suggestions.
Thank you for all that you do for the women on this site. You are truely a GOD send!
Sonia
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AStorm,
My exchange is also scheduled for 1/20, I also have very displaced TE postitioning - one higher than the other, about 5 inches between the two of them. My doc assures me she can fix all of this - sometimes I believe her, sometimes I don't. I too will have drains. I don't think this is all typical, but I think it happens........ You have a sister here....
Geena
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Sonia: You have a couple of options. My only concern with staying with Style 15, is that to go to 700 cc's, you increase the width by 6 mm but only increase 2 mm in projection. You would be going from 15.2 cm by 4.9 cm to 15.8 cm by 5.1 cm. Another option is this: I wonder if your PS would consider the Style 20s at this point - which would in 750 cc's be: 15.0 cm wide by 6.0 cm projection?
I am afraid that you are going to feel that you are just gaining extra width by going larger with the Style 15. Make sense? However, if you feel you could handle the additional width - which will increase your bra size and give you more cleavage - then keeping the Style 15s would be fine. It is just that you have this other option, now that you are in the upper volume range. I know that sftfemme who posts on EC switched from the Style 15s to the Style 20s and she has a ribcage dimension close to yours and she is happier with the increased projection. Just something to consider.
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Karen,
Oncology social work is a very special field. I admire that this would be a potential choice for you. Your own personal experience with BC will no doubt enrich your practice. I have a good friend who does this for a hospice and there is a beautiful serenity about her, which I'm sure she blankets her patients in.
And I'm glad your shoulder pain is slowly leaving the the premises!
Geena
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Thank you Deborah! After I read your post I checked my card and what I have is 20's. So do you think that going from 610 to 750 would be too much. I just don't have any projection right now and HP implants will be too narrow.
Thanks again!
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Dani,thanks for that sight.. I will check it out. I have lost 4 pds and have about 15 more to go. I am finally able to get on my treadmill 5 days a week ...that helps A LOT....
I hope you all are well...
I am getting off ALL MY MEDS. I am tired of it all. My pharmacy is helping me. So girls... wish me luck... The meds I take do not keep me alive... they take away hot flashes and pain.... BUT... they also have too many side effects... sooooooooooooooooo... I am done. So far.. today is day two of being weened... so far.. not too bad at all. I have decided.. that if I have pain I cannot control, I will take a pain pill. I have been taking 5000IU Vit D... 1200 Cal. and 400 Mag... and in a few days of this... my bones are not aching as bad at all... ( THANK YOU VIT. D. THREAD!)... my own ONCO and staff did not think I needed more that 1000IU Vit. D.. even thought my levels were so low two months ago.... grrrrrrrr....
Have a Blessed week...
All exchanges and surgeries this week..... ((((hugs)))) and prayers! Laura
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Deborah: No, I haven't posted pictures, lost my camera after xmas and still trying to find it before I decide to buy another one. Guess I could borrow one...The projection, I believe is what is causing them to not match. If you say it takes some months for them to settle then I guess I have to wait but would that change the projection of the implant??
Estepp: Good luck trying to get off your meds, I hope you can do it with out too many problems and lets hope all the vitamins can do the same thing the meds were suppose to do! Were you on Tamoxifen and trying to get off that also? You stated hot flashes and I have heard the Tamox causes that big time. I am suppose to start taking it but still haven't yet!
Dani: Thanks also for the link, I hadn't heard of that one! It looks good and I can use all the help I can get to get this weight off!! Starting back to work this week so hopefully that will help get some of this weight off.
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Laura, good luck getting off the meds. I am hoping weaning goes smoothly. There are natural supplements that can help with alot of what prescription meds can do. My chiropractor was able to steer me to the right supplements.
blessedby4, I am going back to work tomorrow also. What to wear? Showing off the new girls is always the cause of a bit of anxiety. Do I try to hide them with a loose sweater or go for the form fitting top and get it over with? Time to go try on some clothes....Good Luck on your first day back. This was a revision for me so they are probably all sick of me by now! LOL
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Dani- I have never heard of that site but have one on my iphone called lose it!!! I like that one but honestly never put in my food intake- I forget!!! Good Luck to you!!!!
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