IBC lounge: roll call, support and just a good place to hang out
Comments
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Mamacure, contact your insurance provider directly and ask about aesthetic flat closure. This makes me SO MAD. I agree--they'll pay literally hundreds of thousands of dollars for reconstruction surgery, sometimes involving multiple trips to the operating room, but can't pay a plastic surgeon ONE TIME to give you a nice flat closure?
My mom had two mastectomies and with her 2nd, her scar was all lumpy and bumpy and weird. Medicare paid to fix it.
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Traveltext--no offense but I believe that since men start out with a flat chest the closure would be less of a challenge. If a woman has larger breasts there is a lot of skin to deal with, getting the "aesthetic flat" requires more surgical skill. The plastic surgeon doing my closure explained that because of the size of my breasts, he might need to make a longer incision under my arm in order to smooth things out and not leave a "dog ear", which is one of my main concerns. He wanted to make sure I knew upfront that I was not going to have a 4" scar where my boob used to be. (Although many women do; just not in my cards.)
Another concern with IBC patients is how much skin involvement there is, and if there will be enough healthy skin to close the wound. I have a relatively small area of skin involvement but some women have to have grafts, etc. As SBC said, if insurance will pay big bucks for implants, why not pay for the aesthetic flat closure for other BC patients. That just doesn't make sense.
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LW. I started out with a flat chest now I have a concave hole where my left breast was. My surgery followed chemo since I was inoperable on diagnosis. I think men deserve recon too, but it’s not considered important.
I certainly understand the importance of breasts to women, but I’ve read so many stories of recon gone wrong over the years that I’m not surprised at the flat and fabulous movement.
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TT--I totally agree that men should have access to every reconstructive option that women have. The point I was trying to make is that women's mastectomies have a lot more tissue to deal with so I don't believe consulting a surgeon who does male surgeries would necessarily be a good choice. You previously suggested seeing a surgeon who does male mastectomies and I don't know that that would be a good solution for a woman.
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LE. Sorry, that was a joke. You’d be lucky to find a BS who has done a guy. That said, you need to get your BS to give you a thorough briefing on what he thinks he can do. Too many people wake up and go WTF.
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Oh, I guess I missed the joke; sorry.
Yes, I met with my surgeon and plastic surgeon on Wednesday. I have a good understanding of what they plan to do. I'm fairly certain I'm going to wake up and go "WTF" regardless.
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TT I don't know how things stand with this down under, but here in the US, I would like to see what would happen if a man with breast cancer was denied reconstruction because he's a man. I bet we'd have a firestorm you'd be able to see from where you are.
In my breast cancer travels I met a man who had BC and was BRCA positive. His adult son had prophylactic mastectomies with immediate reconstruction. I saw a photo--his chest looked very natural.
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SBE. I think it’s available but not offered as a matter of course here. With your friend’s son, the result would have looked okay since there was likely nothing removed but the small amount of breast tissue a man has. My surgeon went wide and deep and not sure I’d have wanted a graft for recon.
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Good point, TT. With prophylactic mx and immediate recon, it's just the breast tissue they're after, not a wide excision of skin. Still, if women are offered tissue expanders and implants, it should be an option for men.
I have a number of big scars--shoulder reconstruction after a mountain bike fall, two new knees--and they don't bother me even a little. But after the umx, the scar was lumpy, bumpy, wrinkled, ugly...I absolutely hated it. The disfiguration reminded me many times a day of what I'd lost and the process I had to go through to lose it.
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SBE. I totally get your horror at the Mx result. The difference between before and after for a woman must be horrendous, an aesthetic nightmare. I’m so thankful to be a guy with this disease in this part of the treatment.These days in pretty relaxed on the beach without a top. I’ve told this story before: when a young grandkid asked what happened, I said I was in a sword fight. Cool, he said.
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TT, love the sword fight explanation.
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Good morning. Diagnosis Stage 3 IBC, invasive ductile carcinoma, triple negative, metastatic to lymph nodes.
Age - nearly 72
Chemotherapy - 16 infusions finished August 17th.
Pending - double mastectomy and radiation
I'd love to hear from anyone who has been through this and is living in recovery
So many in my community do not understand IBC and can't relate.
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Welcome, Cynmaggie. You're right in the thick of it now, with chemo behind you and surgery/radiation left to go. There are a lot of us here who have experienced the same thing and have lived many happy years since. Please feel free to come here anytime. You'll be looking at breast cancer treatment in your rear view mirror before you know it.
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Thank you SB Elizabeth! Its wonderful to hear! I am so very tired! Just hoping to regain some strength and energy before surgery. (And some hair
too! The chemotherapy was successful, Praise GOD! No more cancer in my lymph nodes and the 22mm mass is now a 'residual 9x6mm spot'. The hot, red swelling is gone! Just waiting for a surgery date now.
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Welcome cynmaggie and glad to hear chemo did its job. Keep us posted about surgery and any questions you might have.
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Thank you! I have a double mastectomy scheduled tentatively for Sept 21 or 22. I will not have reconstruction. What do I need to take to the hospital. Will I be told what to wear after surgery? so many questions
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Hello Maggie and welcome, though I'm sorry you have to be here. I just had surgery on Monday (single mastectomy and lymphovenous bypass) and I feel pretty good, considering. Do you have someone to help you when you get home from surgery? My husband has been helping me strip my drains and with a shower yesterday. I'm not sure I could manage all this by myself.
When I was preparing for surgery, I bought several front-closure robes and tops. Unfortunately they mostly all have ZIPPERS and are not "drain friendly" at all. You need something very loose fitting if you will wear the drains on the inside of your clothes, or something with buttons or snaps if you wear the drains on the outside. My husband had bought me a "nail apron" from Home Depot which works very well since it ties around my waist and has pockets that the drain bulbs fit into. (It was about 97 cents so not a big investment.)
I'm a bit surprised that you will have a double mastectomy; my surgeon was not agreeable to removing my healthy breast at this point because she wanted to make sure I had the least opportunity for any issues with recovery. Honestly after having a single mastectomy and dealing with the drains and wound care, I'm glad I only had one removed!
As far as what to take to the hospital, just a roomy robe for the trip home and maybe a toothbrush and toothpaste. I wore a hospital gown the entire time and didn't feel like getting dressed when I was released, so I just wore my robe for the wheelchair ride to my car. You will be given plenty of instructions on how to care for yourself in recovery, and probably a mastectomy bra or camisole.
My best wishes to you. Ask all the questions you need to; we will try to help.
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I echo everything LW422 said above as far as what to wear. I also found for myself, the most comfortable thing to wear when it came to the drain was a sports type bra with enough room that I could tuck the bulb up there. I still drained as I was supposed to but because it was held up in the bra, I did not find the stitches uncomfortable because of any pulling of the drain which was an issue initially.
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Thanks everyone! Looks like surgery will be either Sept 21 or 22 - final date and time tbd. I appreciate your support
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I got the BEST possible news from my SO today... pathological complete response to chemo!!!! No trace of cancer left in my breast tissue or the 32 lymph nodes she removed!! OMG, I am so psyched and relieved.
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Congrats LW422 on pCR, that is great news!!!!
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Thanks so much, Peter!! I'm hoping for the same news for Nicole!
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Congratulations LW422, glad to hear the good news!
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Thanks Mara!
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congratulations LW422!!! That is the best news!! I am so happy to hear this. Great job!!!!! {{{{hugs}}}}} & high five!
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Congratulations LW! That is such great news!
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Thanks Mamacure and Blue!! I'm very happy about the pCR, and also my genetic testing came back negative for all tested. So I don't have to worry about passing this crap down!
Now if I can only get rid of these dang drains!!!
Hope both of you are doing well.
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That is WONDERFUL!!! So happy for you!
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LW422, this is abso-friggin-lutely outstanding news. You must have been floating around on a joyful cloud all day when you got THAT phone call.
Drains are the cocklebur under the already-uncomfortable saddle of breast surgery. I'm sorry yours are still in residence. Although...I fast-talked my plastic surgeon into pulling one that was barely over the 24-hr limit, and I developed a persistent, sloshy seroma. I wished I had just lived with the thing until my body was less juicy.
Here's to great path reports and drains in the trash can. Congrats. SB
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LW - drains will be gone soon and only a distant memory! When you bring it up, I remember how much I didn't care for them, but honestly it is only when people bring up drains that I even remember them.
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