May 2018 Surgery Support Group
Comments
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sn75- having the flu and having TE's does not sound fun at all. Hoping you get better soon.
Nothing to report. Having one completely flat and the other looking sad but I am hardly in any pain. I can sleep on my side and everything. I am knowing that surgery on the 11th will change all that. I just got the paperwork signed today and they are going to replace both of them.
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sn75....I am constantly tired! No matter how much sleep I get I don't feel rested at all! And my appetite sucks too, I've lost 20 lbs in 2 months. I'm hungry but nothing is appetizing. I just said to my sister the other day I just want one aspect of my life to feel normal, back to how it was.
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I am 5 weeks out from my exchange today which is farther along than many of you and I still don't feel completely normal. I started back at work teaching this week and I cannot even describe the exhaustion. I've come home and napped everyday. Luckily my mom is here this week helping with the kids but next week I don't know how I'm gonna survive. But you just do, you know? To complicate things I have a partially frozen left shoulder so I'm in PT twice a week after school. I think I could move on if my shoulder was working and I wasn't in pain but that will come too. As my coworkers have told me, be kind to yourselves. We'll get there.
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Sn75 - I cannot imagine tackling the flu during this! I am so sorry
I don't feel anywhere near 100%. I have been getting closer to a regular routine, but I am uncomfortable for most all of it. My chest tightness, or pain according to the PT, has lessened a tiny, but not gone by any means. My appetite has been returning the last 2 weeks, but still way more tired than I hoped to be.
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sn75, sorry to hear that you are so sick. I think it takes about a year (without complications) to regain our stamina. April was not that long ago. Don’t feel guilty if you are still struggling. It will get better.
Sending a warm gentle hug😊.
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Count me in the tired group. I went from doing nothing all summer to teaching/coaching/back-to-school events and I'm currently running on fumes. My exchange surgery is supposed to be next Tuesday, but I'm a little concerned that it's not going to happen because the tissue on my left side is starting to look more red and that's the side that had an infection last month. I don't have a fever and it's not hotter than the good side, so hopefully I can still have the exchange surgery. I left a msg on the voicemail at my PS office this morning asking if he wanted me to come in today and 4 hours later, still no response. *sigh*
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Big hugs to everyone....we’ve come this far we can keep going!
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Welp, I may have to join the September surgery group and then the December or January one! I had the expander on my infected side removed yesterday. It feels SO good to have the TE out - it was swollen and painful and looked like a tomato. The dr wanted to take out expanders on BOTH sides, replace with new expanders, and insert an antibiotic plate on the bad side, then do exchange surgery in a month. It didn't make sense to me to meddle with the good side, and I hated the idea of getting implant surgery just as I'm getting over the infection. At the last minute I told him I wanted the TE removed on my bad side and then sewn up and left alone to heal on its own. And I decided to leave my PS; he and his office have been so disorganized and a friend who is well-connected in the PS world advised that I get out now. I'm meeting with two PS tomorrow in the hopes of finding one who will be a better fit. I talk to my female students regularly about advocating for themselves and learning not to be afraid of conflict if it is needed, that they don't have to be pleasers all the time. Yet here I was enduring a PS who repeatedly disappointed me; I need to walk the talk now!
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ReadyAbout: What a good move. You need to feel that your PS has the skill set to manage your case appropriately, have that trust, and be sure he/she LISTENS and is paying attention. I wish for you to find a plastic surgeon who will carry out the rest of these procedures with compassion and skill. We know that their specific training is super technical, and it seems that the listening and paying attention part doesn't really get into all PS's practices. But they're out there, so find the right one! YES, the infection has to be solved before anything else.
In my city, Portland, OR, our many excellent surgical oncologists are good sources for recommending good plastic surgeons. And, some PS surgeon practices have more experience than others with breast cancer reconstruction. I've noticed (from friends' stories) that the PS's who specialize in breast enhancement surgeries don't manage care as well for the much more complicated reconstruction cases. Warm wishes to you.
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ReadyAbout - I am so sorry to hear about infection and all the complications
Good job on advocating for yourself and your health. I struggle with that and admire that quality in others. Praying that you find the perfect PS and get this show on the road! 0 -
ReadyAbout I'm so sorry you're going through all this on top of starting a new school year. I hope you're able to heal and find a new PS soon. How are you doing at school? I have to say being back has been easier than I thought. I thought I'd be dragging and sore. And while I'm definitely tired, it's good to be back in a routine. I'm still in PT and that's been helping build strength and improve my shoulder. Here's hoping you feel better soon too.
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readyabout: Omgosh!! I can’t believe what all you have been through!! Good move in making the change and advocating for yourself. I have faith you will recover well from the infection and find a much better fit ps.
Hikinglady: I am in Salem! We are practically neighbors. I LOVE my ps. Our state has excellent medical care.
Please update us when you are able Readyabout.
I go in for my exchange sometime Oct or November.
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What’s everyone doing for their scars? Once they were healed I haven’t paid much attention to them because they’re just going to get cut back open (fingers crossed in about a month!) for the implant exchange. My ps hasn’t said anything about using creams or massaging them but I’m worried too much scar tissue will build up if I don’t massage them. I’m hoping if it was a real concern at this point my dr would have been having me do things for them.
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SLL101984, I was recommended to use Strataderm scar gel with silicone on my scars and I've read that rose hip oil is meant to be good too, but it would seem premature for you if you're going to be having more surgery soon. I recommend using moisturiser to help your skin and also massaging to help healing and avoid scar tissue. I have learnt that surgeons often don't focus much on after care, so it would be good to follow other people's experience on this forum and whatever else you can find out. If you're not sure, you could Google it. I was given printed pages before my surgery that said it definitely helps to massage the chest area after surgery.
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Readyabout - I hope you are on the mend soon and have a doc that you are comfortable with.
SLL - I use Palmers paste. Same thing pregnant women put on their bellies. It's soothing and helps a bit.
My exchange surgery is December 14. That will be seven months with these expanders in. Ugh. I'll be getting SRX 800 Nutrelle Aspira implants that are the gummy silicone and very full profile. I can't wait for this next part to be done. This process has worn me down emotionally, physically, and mentally. And I didn't even have to do other treatments. I can only imagine what that would be like.
I have days where I am completely useless and lay down all day. Even cry for a length of time. Just not quite who I was before surgery. Frustrating.
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SLL - I have been using grapeseed oil for the vitamin e about once a day on my incisions.
SN - Ironically, I just told my sister that I was "useless" for most of the day today
This chest tightness is doing me in and i hate that it is discouraging me so much. I too have not done further therapies and feel badly for my complaining when I am so fortunate in those regards. 0 -
SPDGirl, please don't feel bad for telling us how you feel. Even if you are fortunate (like me) in not having to do further therapies, pain still HURTS and it's normal for it to get people down at times. Please be kind to yourself and know that your feelings are understandable. Sending you hugs.
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Re: surgery scars
I'm seeing a PT in a couple of weeks who specializes in all things post-mastectomy. Range of motion, upper body strength-rebuilding, scar "remodeling," and also lymphedema (manual drain techniques) and reconstruction issues. I want to have her assess me in all ways, and guide me in how to regain strength, ROM, comfort, and protect myself from lymphedema, etc. I have very little downward pressure strength, so I can't easily open a childproof medication bottle.
I have not been lifting weights or doing much exercise. I've been surviving chemo, and that's about all I gave myself as the project to accomplish for these past three months! Just finished chemo, so it's time to move forward on strengthening.
I'm not having my implant surgery until January. This is because of personal obligations and family responsibilities in November and December. So, it will be 7 months of TE's before "swap surgery" for me. Ugh. They are SO uncomfortable.
My healing was extremely slow after my BMX. It took 8 weeks for the incision to heal on the right side (which had radiation in 2003), and just 2.5 weeks on the left. And many weeks of a drain and also a hematoma. But, no infection, thank heavens. Since my PS told me already that he's going to re-use the exact same incision, I haven't really thought it worth worrying too much about massaging the incision scar. However, I'll get the PT's input on that question.
My main struggle going forward is my worry about healing. I have stopped at about 300 ccs in TE's that will hold 500 (sized to my rib cage, so that volume information is not very relevant). Perhaps I'll end up with quite small implants. I fear that if I keep adding more saline, my compromised blood supply (due to scarring from the radiation) on the right side will be even more challenged to heal! No one has answers to this. The PS says "let's just see how you do with more saline added." Which actually means, we'll find out, after the surgery, how healing will be.... My right side pec is like a brick wall. This is because it, too, not just the skin and other tissue, has (invisible but present) scarring, so it's not having a great time with TE's.
I feel such compassion toward all of us. We've each made a journey through difficult lands, and some anguish along the way seems extremely justified.
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Hi ladies-
I haven't done a thing with my scars either. Just back from Mexico from a wedding and since I hit the three month mark I was actually able to get in the pool and ocean, which was awesome. Next Tuesday it all starts again, my exchange is on the 18th. My Dr. office called this morning and casually mentioned they had an cancellation and if I wanted get in tomorrow instead. I almost had a heart attack, "um no, not at all mentally prepared to go under the cut again" Told her I had weekend plans. They seem very casual about all of it, so I am hoping this is an indication of how easy the surgery will be! lol (Wishful thinking?) Talked to a friend this morning 12 days post her mastectomy and she is miserable. I told her to hang in there and at the 4 week mark things get better. Makes me think of how far we have all come.
My incision site on my right side has been itching like crazy. Yesterday I wore a bra too tight and it all started then. It's totally healed so I have to assume its just the nerves, but has anyone else had this itching business? I've been loading up on the lotion which has seemed to calm it, and I'm free-bra-ing it today to try and avoid further irritation. Post exchange I plan on using a silicon based scar gel, as I was told these are the best for minimizing. Anyways, glad to hear from you ladies and shout out to those dealing with issues, sending healing vibes.
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thanks for all the input ladies!!
Hikinglady- I’m sorry if you get a notification that someone reported your last post!! I’m on my phone and accidentally hit it!! But I think I cancelled it!!
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Woop woop! My neighbor, who is a nurse practictioner in plastics, just came over and pulled my drain from the TE removal surgery last week. I feel glorious! Hopefully I won't ever have to see my original PS again. I found a new doctor and if there's an upside to all the complications, it's that it made me find a new PS.
sn75: I will probably have expanders at least 7 months, so I feel your pain. I'm excited for your exchange surgery! My neighbor told me that expanders are a lot heavier than implants, and I feel like my right foob has sagged since my bmx/recon surgery. She says I will feel so much better when I get implants.
Scars: some people swear by BioOil, others like Mederma, and there's a bandaid type thing called Scar Away that you put on your scars every day for a few months and it helps diminish them. My incisions haven't bothered me even once, and since I have two more surgeries ahead, I'm not spending any time on them yet. I'm too busy finding prosthetic inserts to put on my flat side, lol.
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Aussie-Cat: thank you for the kind words and encouragement.
Hiking-Lady: I love that you have found such a specialized PT. Would love to hear how that goes.
Michi: It is wonderful that you got to enjoy the water!
ReadyAbout: Congratulations on being free of your drain AND your old PS!
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I'm meeting with someone tomorrow who will have bmx/recon in November. I am going to print out a supply list that someone shared with me before my bmx. Other than that, is there anything you wish you had known before surgery? Anything advice that was particularly helpful? I'd like to put together a list of advice/insight that I can share with others in the future.
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I wish I had been more prepared for the nerve pain. Going home with Oxycodone and 800mg Ibuprofin was childs play. I discussed with my PS at my phase 2 surgery the pain issue and he sent me home with Oxycodone and Gabapentin.
Otherwise I was pretty much prepared for my surgery. I was told it would be a 4-6 week recovery. My brain processed that as 2-3 weeks! NOT!!! It was 5 weeks before I turned a corner. Just tell her to do everything the doctors say to do. Get Ivory Antibacterial soap and bath with that while incisions are healing
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ReadyAbout, you might get some ideas from a thread called :
Topic: Mastectomy--what did you wish you had known?
https://community.breastcancer.org/forum/91/topics/855143?page=1
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Readyabout, I wish I'd been prepared for just how uncomfortable these TEs would be for many weeks post op. I thought I was pretty tough, but this was very difficult for me. I was glad that I remembered that my anesthetist mentioned that gabapentin might be useful post op. It made a huge difference in my comfort level once my oncologist prescribed it for me. I still needed periodic Vicodin, but not often. I'm now 3+ months post op. I tried to taper off my gabapentin 10 days after my last expansion, but the pain returned. Hoping to try to taper again before my exchange in 10 weeks.
Gabapentin is my best friend these days. I wish I'd started on it earlier.
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ReadyAbout- I wish that I had understood realistically what a time frame on recovery was going to be. My BS told me to expect 4-6 weeks and I truly thought that meant that after 6 weeks I would feel 100% back to normal.
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SPDGirl: Same with me. I wish I had known that "recovery" doesn't necessarily mean "normal." It's a new normal for sure!!
I am not doing anything for my scars. I know many more surgeries are on the horizon, well at least one or two more. I also plan on getting a tatoo to cover up any scaring. So,I am not doing much about that for now.
I too sleep more than I like to admit and find I am feeling useless and worthless a good deal of the time. Then I'll have some good days, where i am strong, productive and feel great. So, it's definitely a two step forward, one step back, or more like two steps back, one step forward kinda thing.
I went in for my last fill and asked the doctor NOT to do a fill and that I wasn't wanting to do any more fills. Just tired of the pressure and pain. Having large breasts, or breasts that are "attractive" is no longer important for me, as it related to comfort and health. I am choosing comfort over vanity. I was a D cup before, now I'll be a C. That's fine with me.
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exchange surgery scheduled, finally!!! October 8 these expanders are coming out!!!
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Great news SLL!
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