One of the things I wish I’d handled differently in my breast cancer process is that I wish I’d had this one plastic surgeon who was touted as being “the best” in the area, perform my breast reconstruction. I had a couple of meetings with him, we had agreed to the type of procedure (expanders with implants) and we even scheduled the mastectomy/reconstructive surgery which was going to happen together with my breast surgeon.
But he was out of network. I’m new to the world of plastic surgery and didn’t realize that the “really good ones” are usually not in network, and often don’t want to get involved with insurance companies since a good amount of their surgeries are elective and not covered (think breast augmentation).
When I first talked to his office staff about the procedure, I got the impression that the 20% non-insurance-covered portion of the procedure would fall in the range of about $5,000-$6,000 and figured that I would be willing to pay that much for such a complicated surgery, especially given how much the nurses at the hospital raved about how wonderful this particular surgeon’s reconstructive work was and how great his patients did afterwards.
But then a few weeks before the surgery was to take place, I got a call from his office. Turns out the co-pay for my procedure was going to be in the range of $20,000 to $25,000. I was stunned. I had no idea it would cost that much.
I didn’t know what to say to the woman on the phone and was just plain dumbstruck while she went on about how they could put me on a monthly installment plan and I could pay it off over a few years. All I could think about was how my daughter was going to be driving soon, and would need a car and how this surgery sort of felt like I was depriving my daughter of the car given the price. In my weirded out state of mind, I kept thinking I would be walking around with what amounted to the cost of a car on my chest.
I was so upset and was really kind of mean to the billing woman from the plastic surgeon’s office, saying she should have let me know this way sooner, how could they tell me this NOW, this should have been explained a lot earlier in the process. The last thing I wanted to do was pay a monthly fee for something that I didn’t even want, it would just be a horrible reminder of something I didn’t want in the first place. The whole notion of the reconstruction just hit me square in the face.
I didn’t really want new breasts, I wanted my same old ones, but sans cancer and nothing she could say was going to make me be willing to pay $20,000+ dollars for new ones. And the idea of having to make monthly installments on new breasts that I didn’t even want, just made me nuts and I told her to cancel everything and that I would have to find someone else in network.
Then I hung up the phone and went a little crazy for a few hours; screaming and crying and just hitting things. It was one of the only times I really lost it during the whole process.
But then after a while I calmed down and called up my breast surgeon and asked her office for a referral to another plastic surgeon who would be in network and we found the one that I eventually went with. And his work was good and I’m okay with the result. My new fake breasts look fine under clothes and are proportioned and I can wear a bathing suit without anyone really noticing that I’ve had reconstruction.
But. I think that if I’d had this other “best in the state” plastic surgeon perform the procedure, maybe I wouldn’t have the level of discomfort that I still have from my current reconstruction. They’re tight and depending on how I’m sitting or what type of chair I’m sitting in, I feel a lot of pulling and tugging.
I love to read in bed, and I can’t really get comfortable anymore in a soft bed, I now can only be comfortable in a hard back chair, so now I can’t really read before I go to bed at night anymore. It’s also very hard not to hunch my shoulders because of the tightness of the implants. I frequently wonder, now, if I had had the other surgeon if perhaps I wouldn’t have the same discomfort.
Two of my friends who later had breast cancer had the expensive surgeon (he was in their network) and both are very pleased with the results and neither of them have the same tugging and tightness that I do. I also think that if I’d had the expensive surgeon, I would have less scars, or maybe smaller scars because of how many procedures he’s done and how expert he is in this area.
Please ask for referrals; ask your friends who’ve had breast cancer who they would recommend (believe me, anyone you know who has had reconstruction will be very open and candid about it with you.) I was actually kind of shocked at the number of women who shared their very intimate surgical stories with me. There’s nothing like a first person recommendation when going through breast reconstruction, so ask your friends, ask your doctors, ask around.
If you’re reading this, and considering breast reconstruction, please think of the long term repercussions. Learn from my mistakes and figure out how to get the very best plastic surgeon you can find. In retrospect, I think I should have let the “expensive” plastic surgeon do my procedure and cost be damned. But since I can’t change my own outcome, perhaps by sharing, I can help encourage you to make the right choice.
You made the best decision you could under the circumstances. Worrying about finances constantly is also detrimental to your health. I’m sorry you have had negative effects from the surgery. I had one of the best surgeons, and I still suffer from pain from my reconstructive surgery, so even if you had the “best” doctor, the results could’ve been the same.
Very poignant post.
Beth Gainer recently posted…Survivorship by Design
Thank you, Beth. I try not to dwell on it, but some days are more annoying than others and I just wanted to get this onto the page. I’m sorry to hear that you also suffer from reconstructive surgery pain, it’s something I didn’t really expect. It’s true, that I made the best decision I could at the time, maybe now that I have 4 more years of information and have done more research, I’ll be able to help someone else who’s going through the same thing.
Hi Claudia:
I would have made the exact same decision. I remember being very concerned about the cost of my cancer treatment and was adamant that every doctor be in-network. My fear was definitely an offshoot of the guilt I felt about putting my family though cancer. Like Beth I know you made the best decision at the time. And, also like Beth, I too had a great plastic surgeon and still have reconstruction pain at times. We do the best we can, right?
Take care,
Debbie
Debbie recently posted…New Podcast: Thriving In a New Normal After Cancer
It’s so interesting that you say that about “putting your family through cancer” because I felt the same way. As if either of us had any say in the matter. Glad you had a great surgeon and sorry about the reconstruction pain, it really sucks. But you’re absolutely right, we will always do the best we can (’cause that’s what women/moms do!). xoxox
It is always so galling to me that on top of serious health concerns we’ve always got to worry about the money. Insult to injury. And some things, like your health, and your body, aren’t places to have to skimp. But, what can you do? Not sure how long you’ve had your breasts, but maybe they will get better. I hope so. You don’t need that discomfort reminder either. It just doesn’t seem fair, and that’s just that.
I was just surprised that no one ever told me, or explained that I might have this much discomfort. Oh well, life goes on and believe me, I’m fine. I just felt I had to get that off my chest (holy smokes, pun intended, that was just awful!). Thanks, as always, for reading, Kathleen. xoxo
Claudia,
I’m guessing I would have made the same decision that you did, and felt the same as you did as well. It’s a tough choice to make, and I’m sorry you are feeling so uncomfortable with the result. But I want you to know, from someone who didn’t check out your boobs (!!) when I met you is that you looked bee-u-tee-full when we had lunch. I mean that. Inside and out. xo
Cathy Chester recently posted…What’s Happening To The Kennedy Center Honors?
Aw Cathy, you are the best! Thank you, the feeling is mutual. You just glow, my dear. xoxox
So Sorry Claudia that your breasts are uncomfortable. There are so many choices and decisions when first diagnosed that it is difficult to make 100% the best possible fool proof positively accurate decision! I think breast cancer navigators or cancer navigators are wonderful for just this reason. Maybe the option could have been to change your health insurance but prior to 2013 this was never an option either.
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Yes, the breast care navigators are fabulous! My hospital had one who I called my personal angel, she was so helpful and caring. I think that where I am right now is where I’m supposed to be. Maybe in another 6 years when I’ve hit the 10 year mark and if my implants need to be replaced (my surgeons told me I’d most likely have to redo them in 10) the newer ones won’t be as tight and maybe I can fix the situation then. For now, no more surgeries for me. Thanks for your note xox
Well, I had to wait a year because of my dx. And poor prognosis. After a year I was so so ready. The local plastic surgeon decided I would be unhappy with implants and referred me over an hour away for a DIEP. I already had pain, I already had lymphodema, so whatever. I was sick of the heavy sweaty ever shifting plastic molds in the big ugly bras with no cleavage. I was warned. It is a brutal process. I like my Barbie boobs. I still have all the pain. I now have a giant scar from the open wound healing poorly so no bikini for me. ( this is a joke at 62 ) But I have cleavage. I can wear a nice bra. I have form when I don’t.
Denise, I’m so sorry that you had such an incredibly difficult time. It certainly puts my own reconstruction in perspective. It IS brutal, I am still astounded that the process is so difficult when there are so many women who go through this each year, and have done so for so many years. Thank you for sharing your experience. xo
Hi Claudia,
I have asked myself the same questions. I live fairly close to Mayo in Rochester, MN and sometimes I wish I had gone there. I have the same tightness, pulling and general uncomfortable-ness that you described. I don’t know if this is common or not. Like Beth said, we make the best decisions we can at the time we need to make them. Also, as Beth said, finances do play into decisions as well. And who knows if things would be different had you or I gone elsewhere. Thanks for writing about this.
Nancy’s Point recently posted…Please Stop Calling Cancer a Gift!
I didn’t realize you also had the same discomfort, Nancy. Since this post, I’ve been hearing from many others who are saying the same thing. And, you’re right, who knows what “would have been” if I’d done something different. I only hope that someone else who may read the post will decide to really seriously think it through, and if they can, make the decision to go to the very best plastic surgeon they can find. I’ll say it again, reconstruction is not for the faint hearted, it’s very tough. Thanks for reading. xo
Wow.
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🙂 xo
If your discomfort continues, do you think you will have another surgeon try to fix the tightness you are feeling? I’m sorry you’ve got to go through that! I’m considering a reduction/lift after I’m done having children, and I will remember your thoughts about going with the more expensive surgeon. Thank you for your insight, Claudia!
Not sure…..I’ve thought about it, but am not sure I’d be willing to go through yet another surgery. Glad this helped and yes, please do consider the very best plastic surgeon you can find. It will make a big difference. Thanks for reading and commenting. xo
You can have reconstruction at the same time as your breast cancer surgery or some time later. It is a very personal decision and you can choose what feels right for you. Your finished breast may look better because the surgeon is usually able to use the breast skin already there.
Know your limits. Figure out what you want and do it properly. Breast augmentation appears to be a favourite. Women purchase for themselves and men purchase for their women. Should you decide this is something you’d like whether for cosmetic reasons or for self-esteem after surgery, listen to what your doctor says. Don’t go overboard.
Hi Claudia, I am sad to know about your experience and the pain you went through. I hope you are doing good now?
Yes, much better, thanks for your concern.
Really interesting post. Keep it up sharing such good posts