May 2018 Surgery Support Group
Comments
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I wear a sleeve on my SNB arm when I lift weights because I have had axillary cording 3 times since bmx and I've had cellulitis (infection) twice on that side. I have read a few articles that say cording and/or cellulitis can increase risk of LE and with my luck, I will get it. I am currently flat on one side due to repeated cellulitis. I will get implant on the good side and new TE on bad side Nov 5. Maybe get implant on bad side in Feb but I also need hamstring surgery so I need to triage which body part is betraying me the worst, lol.
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thanks hiking lady! I don’t understand why no one tells us this stuff. I have a very similar history to yours, lumpectomy with two nodes followed 8 years later with mastectomy and more lymph node removal. So I definitely don’t want to take any chances with flying. I bought a sleeve but was not told to keep it on after or put on early.
Ready about is it a good idea to wear when lifting weights? My PT didn’t mention that and I am only lifting light ones.
I really wish some ofthis came with more information. It is frustrating to always be reinventing the wheel.
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MORE: Re flying & lymphedema and compression sleeves
Here's an interesting "debunking myths" assessment article. Basically, we can also help ourselves during flights by "pumping" lymph, which always happens when we move our muscles. So, flexing and moving arms in all ways is also helpful. As it also is helpful to pump feet and move ankles and rotate them and flex our legs, to prevent blood clots during long flights. The (lymphedema-related) risks of flying include: inactivity, air pressure changes, salty food
Compression sleeves & Flight & Lymphedema
And, this breastcancer.org site's own informative summary article about this:
Another informative list of how to travel safely, whose authors and editors are experts in this field
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spdgirl- still doing well. No pain just lots of soreness on my stomach and top of the implants is very tender where they injected the fat. I was looking at my implant card and I actually ended up with 235cc implants, smaller than I was expecting but dressed (even with a sports bra on) I think I’m a little bigger than pre surgery. I look like myself with clothes on (naked forget it!), and that makes me feel better. Good luck to this event still going through this surgery stuff!
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SLL- glad you are doing well!!
HikingLady-
I’m so glad you provided information on this, I was told by my surgeon I only have a 1% risk by taking a node (same risk as the breast surgery itself) I was nervous about it from the beginning and didn’t want to take a lymph node at all considering mine was basically a prophylactic mastectomy. She took two sentinel nodes. I have flown at least 8 times since my surgery. Going to Brazil for New Years which will be a super long flight, and I’m now pretty nervous about this. The last thing I need in my life after this year is Lymphedema!
I’m now thinking about trying to find somewhere near me and getting fitted for a sleeve.
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thanks Michi! How long were you lifting restrictions after exchange? Hoping after a week I can at least take my daughter in and out of the car
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SLL-
Surgeon told me two weeks, I’m a little over three weeks out and back to lifting my daughter (With caution)
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Hello ladies! I can't seem to catch up on how everyone is doing, but what I've been able to read sounds great! While recovering from my BMX, I spent so much time keeping up with everyone, then I went back to work and life got in the way and I haven't been back. On Friday, I had my exchange surgery. It was just as I'd heard, so much easier than the BMX. What a relief to have the cement blocks out of my chest! The pain has almost completely been from the fat grafting, and each day it has gotten a little better. I'm battling headaches, nausea and some dizziness and I wonder if it may be the Keflex my PS gave me. I am wearing a compression wrap on my stomach and a surgical bra, without the ten pounds of gauze they stuffed me with. While I know that it is early on and I have been smashed in this surgical bra since surgery, I can barely stand to look at my chest. Honestly, I hate it. My PS went with 600cc gel implants, but they just look like big, wide, flat mounds. I know it's partially because I was used to those erect, protruding cinderblocks that were spaced too far apart, and very unnatural looking, but even with a larger sized implant than I had expected, my chest looks terrible. I've heard that they go through some type of "fluff" or something, and I know I shouldn't complain because, as I've been told, "I'm alive", but please someone tell me that it gets better than this. I wasn't planning to look like a supermodel or anything, but somehow I thought they would look more like breasts. Were my expectations unreasonable? Has anyone else been disappointed? I'm not disappointed with the size necessary, but the look. Maybe it's just too soon? Maybe I just need to stop whining and get over myself
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I had a mastectomy on the right side without reconstruction followed by radiation. I didn’t have any complications with the surgery, but still have tenderness across my chest. I have very good range of motion, but pectoral muscle is tight, so I do stretching and physiotherapy.
How are you all feeling in terms of tenderness across the chest area at about 5 or 6 months after mastectomy? Wondering if my experience of tenderness at this point is just typical healing time, or unusually long. It’s not stopping me from daily activity, but I have to be very careful my 7 year old doesn’t bump my side or squeeze me too tight in a hug because that is too painful to tolerate.
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Walden1, I had my surgery in June and my chest is still tender too. Usually if surgery pain lasts longer than 2-3 months, it's considered to be nerve pain and that's what I have. It would be good for you to talk to a doctor to see if they can help. I am taking Lyrica and there are various medications that can help. I find menthol gel helpful too. There are threads on this forum about nerve pain. I hope your pain reduces or goes away soon.
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Blessedinthismess: Wonderful news on the exchange surgery being behind you now. I did not have reconstruction so I cannot advise on the look of everything, but am praying for you and that someone else can give you ideas.
Walden1 and Aussie-cat: I am close to 6 months since surgery and I am a little different. I do not have any tenderness, but have chronic chest tightness that is effecting my day to day living. I have not been able to find anything that is making a noticeable difference, nor have I been able to find a professional here that understands or knows what to do.
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SPDGirl, I'm sorry you still have chest tightness that is effecting your day to day living. It must be really frustrating that you haven't found anyone to help yet and I pray you do soon. I don't have chest tightness myself. It's odd that we all have such different reactions to surgery. I feel for you.
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SPDGirl Sorry about your chest tightness. That's a total bummer. I hope you can keep looking for some good solutions for this issue. I am seeing a physical therapist who's working on this for me, and it is helping. To find her, I searched online in my city for a PT skilled with breast surgery recovery, and sure enough, she really is a specialist in this exact thing. Sometimes, breast surgeons can be sources for referrals to this kind of PT. She's basically doing skilled massage on me, specifically working on scar tissue, and also helping with stretching. She's also guiding my rebuilding of upper body strength. My insurance is paying for 8 sessions, which is probably about perfect for what I need. I've had 5, and can really tell that it has helped.
I do have Tissue Expanders, and will have implant surgery on January 2. However, most of what she's doing doesn't have much to do with the reconstruction, it's really work on the scars, and also guidance for rebuilding my upper body muscles. In her massage, she's helping stretch my scars so they aren't so tight, and moving the adhesions so that I have better range of motion. My drain exit site on the cancer side has been VERY uncomfortable, and she's working on that scar tissue, for instance. My drain was in for a long time--4 weeks, so it probably developed a lot of adhesions. It's already much more comfortable because of her work. Not all physical therapists know about breast surgery issues. I hope you can keep looking into this.
It's been really helpful for my comfort and also for rebuilding my strength safely. I didn't do much upper body work for the past many months, because I just felt too icky during chemo to work much on fitness, except some walking. So, my upper body is REALLY weak. My PT is also guiding me to prevent lymphedema. She says that after an axillary node excision, we're all at risk for that for a couple of years, so protection includes a compression sleeve while flying, and care to prevent injury on the affected side.
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SPDGirl, Walden1 and Aussie-cat, I'm five months out and still have nerve pain. Gabapentin has been a wonderful drug for me. I tried to go off it one month ago, but I hurt a lot again so resumed it. I occasionally have breakthrough pain, but life is much better on it. Lyrica works well for some women. I have also found wearing a bra to keep fabric from rubbing on my breast skin 24/7 is mandatory. Otherwise, my non existent left nipple hurts! So weird.
I'm still having frequent muscle spasms, but I remain hopeful that when I have my exchange surgery next month (and have revision to prepectoral placement of the implants) my muscle spasms will be gone. We'll see. I doubt it will change my neuropathy pain.
I think nerve pain post mastectomy is more common than we think. This is a good podcast about it from this website.
https://www.breastcancer.org/community/podcasts/postmastectomy-pain-20181005
And I'm very hopeful that this simple intervention may be helpful. I will ask my breast surgeon about it at my next appt.->
http://cancerres.aacrjournals.org/content/73/24_Supplement/P3-10-03
I'm wondering if anyone has tried it. Please let me know if so.
Gentle hugs to all. Becky
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Becky, thanks for your post. I'm sorry you still have nerve pain. I'm glad the Gabapentin helps. I find wearing a bra for very long makes my nerve pain worse. I really hope you feel better after your exchange surgery next month. The intervention in the last link looks very interesting and I've never heard of it before. The article was from 2013 and I wonder if it's caught on. I doubt they do it in Australia but I may ask a doctor.
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Blessed - what profile are your implants? I have my exchange on December 14 and I’m going with 800cc gels with the highest profile.
My doc thinks I have capsular contracture on my left side. I’ve had lots of pain, tightness, and pulling for several weeks now. I think it was due to trauma from an issue at work from being hit in the chest. He put me on Montelukast that is supposed to help with it. Not sure if it is - it’s a crappy med that doesn’t make me feel very good.
Anyone have suggestions on post surgery bras in the weeks after? I’m not sure what the doc will give me and I’d like to have more than one to wear. For those of you who had exchange surgery, how soon were you driving and back to work?
Hope you all are doing well as we head into the busy holiday season!
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hi SN75,
You’re exchange is coming right up, very exciting! I felt instantly better when I woke up, the tightness I had with the expanders was gone and I felt great. I was driving pretty much the next day because I was off the pain meds and was back to work the following Monday-had the surgery on a Thursday. I have a desk job though, so that can vary. I’ve been using Coobie bras and wore a sports bra for 4 weeks, even to bed (as per my PS) 6 weeks post exchange I feel okay to go bra less.
Best of luck ladies, I’m thrilled with my new ladies and sure you guys will be too
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I have gotten my last fill yesterday. I can now schedule my exchange. After two surgeries to get it right my expanders are holding the saline. I do have an issue. during the replacement of the expanders from ones with holes to ones without it was noticed that I have concave chest holes on each side. I have found out that it is genetic. Now my surgeon has to figure out a way to put in the foob's and get a good result. Never a dull moment.
I am so excited when I hear someone getting their exchange.
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hi ladies!!! A lot going on so I haven’t checked in in a while! I will have to read through the last few weeks of posts so I can see how everyone is doing!
Insurance question- having a hard time deciding between a high deductible or low deductible hsa plan or go a different route with an hra plan. Anyone have advise, experience? I know follow ups and scans will now be part of my life just trying not to go broke!
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SLL: we do not get an insurance choice through my husband's job, so I don't have a good answer on best scenario.
Kandyhunt: congrats on the last fill. Sorry for the added complication of the concave issue. I am not familiar with that.
Bcbc: thank you for the links. That injection treatment sounds so encouraging
Aussie Cat & HikingLady: thank you for the encouragement. I have been searching for any therapy with someone specializing in post mastectomy care and have found nothing! It is so odd! I am trying a new myofascial release therapist Wed and I have a follow up with my Oncologost tomorrow and plan to pick his brain as well. I am very ready to be rid of this tightness!
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SPDgirl, I hope your oncologist appointment goes well and that the myofascial release therapist on Wednesday really helps you. It's odd that it's so hard to find someone specialising in post mastectomy care.
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Hello all! I’m on day 7 post exchange surgery. This one was soooo much better than the last one! I woke up in a lot of pain but the days since have been good. So nice to have those tissue expanders out. Wounds have healed well and I’m pleased with how they look. Happy holidays to all!
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sn75, I'm so glad that this surgery was a lot better than the last one and that it's so nice to have the tissue expanders out. I hope you continue to heal well and Happy Holidays to you too.
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sn75 thanks for posting - nice to hear that the exchange surgery went well. Mine will be January 3, so positive stories are very encouraging, and help me prepare, psychologically.
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Hello everyone! I haven’t been here much but have been thinking about you all lately. Next Tuesday the 19th will mark the one year anniversary (if it should even be called an anniversary!) of my dr finding my tumor. We have all been through so much, so much has changed in a year, and all you ladies were there with me during the toughest time in my life! I hope you all are doing well and that 2019 is off to a better start than last year!
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aw that is nice, all the anniversaries are tough. Just had my first Mammogram since surgery! Joked took half the time!
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Hello everyone,
Yes, we all had a lot of trauma in 2018. My challenge is moving through the Forever-After Terror, and doing each day with some hope. I'm glad to have this supportive forum, glad to live in an era of evidence-based medicine and diagnosis of breast cancer, and I'm grateful for good treatment options. My family and friends are extremely loving and supportive, but people who haven't been through this cannot completely understand what we go through. Wishing you all a much better 2019.
In April, near my cancer-versary, DH and I will have a week in Hawaii. I am excited to look forward to that. My exchange surgery went well, healing went fine, and I'm back to daily exercise and building back my strength.
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My cancer anniversary is this month. I feel like everything is finally coming together. I had 4 surgeries. My first was May 30th 2018 for the big one. BMX and TE's. September 11th had both TE's replaces as the nurse in the PS office put holes in the others. I guess they flipped. And then I had the Exchange surgery January 8th. But I went out in public to a big box store and came down with strep but not in my throat but in my upper chest, face and neck. It proceeded to invade my whole body and I ended up in the hospital. While in the hospital since my incisions from the surgery had not healed and the hospital refused to help with keeping them clean and "doctored" I ended up with a secondary infection in my right foob. So I had an emergency surgery to replace it on February 14th. So far so good. I am still on antibiotics but I am back to work. I feel like I sort of have my life back. This has been a long year. and I could not have done it with the women on this group and this website. It has been my redeemer. Thank you for your support.
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kandyhunt, I'm sorry that you ended up having to have so many surgeries and you got a strep infection! I pray that you recover well and keep getting your life back.
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Kandy- wow so sorry you had to deal with all that! Hopefully everything is officially behind you now
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