December 2016 Surgeries
Comments
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oh jeez... not Vicodin... Valium! Valium will relax the muscles... sorry for the misinformation... cancer brain, me?
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dcbc...easy mix-up! :-) ... i've not taken Valium but I do take Ativan for anxiety that I developed and it has helped me immensely.
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A friend just brought me some cannibas salve. I have noticed that after a chemo round my TEs feel tighter and more sensitive. I'm going try some tonight.
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Lilo, I've not heard of that. Please let us know how that works once you've tried it. I guess living in CA you can obtain all kinds of cannibas concoctions :-)
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Hi Ladies- I've popped in and out of your board- it's helpful as I now had a BMX with reconstruct on 1/31- so I still have a drain in (err)- hoping to get rid of it Monday. Definitely feel tightness, sore, uncomfortable. I used to love getting into my bed, now it's a drag. I bought a wedge pillow and have other pillows on top to prop me up and using a neck pillow like someone else mentioned. So it really seems like it's these TE's that will continue to bother us until they are out?? I'm also so itchy at night- I've been taking benedryl and a tylenol before going to bed. Ugh! Thanks for your posts- helps to know this is "normal".
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albclan,
TE are sometimes uncomfortable. The first couple of fills might actually feel good. You will get more accustomed to dealing with them and get a system. I had 100 cc weekly which is very aggressive. Talk to your PS about less volume and maybe less often. I read somewhere the aggressive fills might prevent seromas. There are still some things doctors haven't quite figured out. A lot of the gals say go low and slow for comfort. Try coconut oil or cocoa butter for your itchy skin.
Regarding sleeping on your back. I never did before surgery. However, for the last six months I have been on my back using the neck pillow, incline, heart shaped pillows under my arms strategy. My bed was always my sanctuary and still is; hope you can work that out.
THE REWARD FOR THIS IS THAT YOUR FACE WILL LOOK GREAT! Sleeping on your face contributes to wrinkles. Also, eat healthy, lots of protein, take biotin and vitamin C to keep skin healthy and help your breasts heal. I have Pineapple everyday for breakfast for the bromelin. Biotin will help with hair and nails also.
Some of my friends embraced their new hair. After decades of coloring, they have beautiful shades of gray, and looked great with a shorter style. It could be a whole new you. No cancer, brighter skin and your new forever boobs!
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ajbclan:
I can relate to the TE discomfort. I had my BMX with TE's inserted on 12/1. I still am not very comfortable in my bed because I was a tummy sleeper. I still can't get used to the pillow prop. I have an electric recliner that I am still more comfortable in, but the TE's no longer hurt. I too had 100 cc fills and they really did hurt for awhile. Keiki is so right about the wrinkle thing! I've always fought sleeping on my face with no luck. Maybe this will be my answer.
Keiki, Thanks for the info on eating pineapple. I'm have two more rounds of T/C, so nothing sounds good, but maybe pineapple would help me. I already take Biotin because I'm cold capping and trying to keep some of my hair (although it is thinning and looks like straw).
Lilo, Did you try the cannibas salve? I wish I lived in a progressive legal cannibas state. I have no appetite from my chemo and would love to get some weed for my right after my treatment. I don't like to smoke it, so edibles would work better for me. I have friends offering to make some cake or cookies, but it's just not the same as the legal stuff I had in Washington State. It's just a shame that I would have to break the law to get some relief.
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I HATE Tissue Expanders!!!
Sorry, I've been away for a while. It seems like all of us with TE's are having misery, so at least I know I'm not the only one. I did have the great luck to develop a Staph infections in the middle of January on my right. I was already filled to 640 cc's when I came down with a low fever, redness, and it was hot to touch. The doctor had me go straight to the ER to have white blood cell count checked, and when it was elevated to show infection, they admitted me and started IV antibiotics. After 2 days, I had to have surgery to remove the TE and replace it with another. Today, I finally caught back up to where I was when it was replaced.
I can't tell you how this experience with the TE has given me a more sour attitude than any part of the process before. My fitbit tells me I'm getting 2-3 hours of sleep on a GOOD night, and we all know how painful the expansions are - and I got to do it twice on 1 side!!!
Please let me make it to the finish line this time. I want my REAL, FAKE boobies....
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Hello all,
Left breast mastectomy on December 15, 2016. Stage 1A IDC, high grade, diagnosed October 21, 2016. Question... headaches after first cycle of TC? More specifically when hair begins to fall out? Seems to have started about 3 days ago, now hair is coming out pretty rapidly. First infusion was on January 30th. Thank you.
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Hi, can't sleep tonight. My TEs really seem to be bothering me lately. Mine were filled with 600cc at surgery on 12/9 and I have only had one full of 75cc since then. I kinda got discouraged when I found out I I had to have chemo and figured what's the hurry. I wonder if they would feel better if I got another fill. They kinda feel like they had slipped to my side and underarm. I just bought a wedge pillow. I can't believe I didn't know about one before.
Catgirl..yes the salve is wonderful. I have actually used it on my back too. It's a shame it is not legal in more states.
It is nice to check in here every once in awhile. It give me comfort to know that what I am feeling is normal. I hate that we all have to go thru this.
So here's my sweet moment...the other day my hubby said that I am beautiful and that my new boobs are smiling at him.
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angnev73...I'm on AC but yes I had a bad headache the first round. My hair started falling out around day 14. I made it to about 3 weeks after the first treatment before I had to buzz it. So unfortunately you are right on schedule. 😣
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Thank you Lilo, I was hoping to make it to the 2nd infusion before the buzz. Looks like it'll be this weekend
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Thanks ladies for helping me feel "normal" with these TE's.....grant it I'm only 2 weeks in LOL. Have some fluid under my arm and went and saw the surgeon today. She wants me to not use the arm and fingers crossed it resolves itself. Crap shoot it sounds like with the draining it. Swell.
Ange- had different chemo drugs but I think headaches are definitely an SE and I had quiet the sensitive head to the point my scalp hurt with the stubble after the shave...but that did go away.
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I don't know if anyone is still on this forum, but as we approach our 1-year-anniversary since surgery (and one year since diagnosis) I'm wondering how everyone is doing? ~ Kim
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Hello Redemptive,
I'm doing pretty well, all things considered. I noticed that I'm reliving some of the trauma of last year as the holidays approach, but mostly I'm happy that I'm not facing a surgery like I was last year. My CA 15-3 tumor markers are slightly elevated, but well within normal. They're being monitored. I also had a scan/scare, which turned out fine. Other than that, I have nothing to be worried about, and I'm feeling much better.
The sensitivity on my chest, (bilateral bmx/radiation), is gone, and I can wear prostheses without a problem. My joint pain from chemo or induced menopause is lessening. I have almost a full ROM in my arms, but there are still some sore spots. I have trouble putting on jackets, taking off shirts, etc. I've returned to yoga and am working to get back to where I was before chemo and surgery. I have no plans right now for reconstruction.
How are you doing?
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Hi, lilp6! I'm glad that overall you're doing well and that some of the SEs you experienced are lessening! I'd say I'm doing well. I had a mammogram on my remaining breast last week and thankfully everything looked good! I have to admit it was more painful than normal because I had a lift on that side back in April and I think it's still a little tender. I've had shoulder pain on my mastectomy side pretty much since my exchange surgery and lift back in April. It was getting better, but now is getting worse again. I'm sure it would help if I did exercises consistently, lol! I still experience occasional anxiety, but NOTHING like what I did in the beginning. I'm learning that with time most things improve, they just take longer than I think they should. :-)
I hope you have a wonderful Thanksgiving and thank you for the update!
~ Kim -
Hi Everyone!
I came in here to re-read this thread to refresh my memory about my surgery. I'm having another mastectomy on December 12, and I feel much less prepared this time, so I thought reading this would help.
It almost feels like I'm starting all over again. I hope they don't find anything when they do the pathology, because then I really will be starting over. For some reason, I think they will. I hope I'm wrong, though. Lobular cancer is sneaky, so even though I had clear margins with my lumpectomy, it could still be hiding in there. And it was triple negative, so that makes it more worrisome.
Kim, my shoulder has been giving me problems, too - tight, stiff, sore. I thought it was from my radiation, but maybe it was from the exchange surgery. I don't know. I need to start doing wall crawls again. It never ends, does it?
Journey
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Welcome back, Journey! Though I'm sorry you've returned because of the need for another mastectomy. Was this a decision made for peace of mind? Sorry if I've misunderstood why you're having another mastectomy. What little I've read about shoulder pain, it seems to be somewhat common, or at least not uncommon, following a mastectomy/exchange surgery. But I'd think radiation could cause issues too.
You're right that it never ends. My OBGYN wants me to have a hysterectomy because of a cyst on my ovary and enlarged uterus and thickening of the endometrial lining. Wondering if it's all caused by Tamoxifen? Oh, well. I'm trying to do my homework and not jump into another surgery unnecessarily.
I wish you the best with this next mastectomy! Seems like it will help to know how to prepare...even if you've not had the time to do it. You know what to expect and what will make your life easier following surgery. I wish you the very best!
~ Kim -
hello! I just had my surgery on December 4th. I had a Prophylactic Bilateral Mastectomy with recon. Direct to implant. this community has been a saving grace so far as far as questions and concerns (and making me feel like I'm not crazy) thank you!
im so sorry to hear about your next surgery. I pray everything goes well and as planned. big hugs.
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Kim, last December I had a MX on my left, and a lumpectomy on my right. They didn't expect to find more than atypical cells because that's what the biopsy showed. It came back as Invasive Lobular Carcinoma, and hormone, HER2 negative. They said there were clear margins, and the subsequent sentinel lymph node biopsy was clear.
Because of the clear margins and clear nodes, we decided to proceed with chemo and radiation for my right side (ILC, too, but ER+, was in 1 of 2 nodes). However, because Lobular cancer is sneak and grows in sheets (no lumps), and often doesn't show up in scans, we planned to go back and do a MX on that side after everything else was done. Everything has been finished (chemo, radiation) for a while, but I've been busy and we couldn't work it in until now.
So that's where I am.
I just can't seem to wrap my head around surgery this time, though. I haven't re-read this thread yet, and think I'll do that tonight. I think I'll feel more prepared (and better) once I do.
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Welcome, Acesmith! You may want to join the December 2017 surgery group, but you're welcome here, too! How are you feeling?
My first MX was direct to implant, but I had problems with blood flow and they had to take my implant out and put in an expander. It wasn't as bad as I thought it would be. We're going straight to expander this time to avoid the problems I had last time.
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MyJourneys, I'm sorry that I'm just seeing replies! Did surgery go as planned yesterday? I realize you may not see this for awhile. I pray and trust there were no complications and that you'll go home today and recover quickly! I'll have an endometrial biopsy on the 21st...doing my best to avoid a hysterectomy, but my results will help determine my course of action. Like you've said, it's never ending, but I'm trying to focus on the many positives. I hope this is it for you...no more surgeries...no more aggressive treatments. Whenever you're feeling up to it and have a free moment I'd love to hear how you're doing! ~ Kim
ACESMITH, Welcome! Just from what little you wrote I sense your spirits are up, which is wonderful! How are you recovering? I agree that this forum is amazing. I'll echo what MyJourneys said that you may want to visit the Dec '17 surgery group if you haven't already. God bless you! ~ Kim -
Hello All! MyJourneys, thinking of you... of COURSE it is harder this time... I would be a wreck if I had to do it all again. You sound like you are handling it all very well. Hope you are up and around, and recovering nicely.
My lumpectomy in December last year was a disaster...I actually had three lumps removed (and lymph nodes... clear, thank god) and my margins were peppered with cancer. I, too, had lobular cancer -- such a sneaky bastard -- and opted to do a BMX in January. In the end I endured 12 hours of surgery within 5 months, but was lucky. No chemo needed, and no radiation after all breast tissues was removed. I've been anxious with all of the anniversaries, but am doing well otherwise. The shoulder where my nodes were removed is still not 100%, and I'm still getting used to boobs 2.0... but otherwise nearly back to normal.
Happy holidays to all of you.
Susan
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Susan, PTL for clear lymph nodes! I'm still getting used to the new boob. I'm almost always aware of it because of a persistent tightness that I feel. Do you have that?
Also, my shoulder has been messed up ever since my exchange surgery the end of April. The pain kept me up at night...had MRI...they found possible labral tear...went to orthopedic surgeon who told me to go home and do exercises. MY PCP gave me a steroid pack that did wonders for awhile, but the pain is returning. I talked to other BC survivors at a recent Christmas party and they experienced the same thing...the pain seems to move around within the shoulder and present itself differently - sometimes it burns, sometimes it's sharp, sometimes it radiates down the arm. Does any of this sound familiar? I know I was never informed of possible shoulder issues. But it could obviously be much worse, so I'm counting my blessings.
Happy holidays to you as well!
~ Kim -
Kim, I had the same thing after my nodes were removed... it was so painful I ended up in the emergency room last christmas eve! I had a series of PT once the pain died down to a manageable level... I highly recommend it. The hospital where my surgery was done has a PT center and there were several therapists that were experts in post-breast and node surgery. It was wonderful. If you haven't had PT I HIGHLY recommend it. It made a huge difference for me.
XO,
Susan
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Thank you so much, Susan! I think I'll research PT in my area. Best wishes to you as you continue to heal, though sounds like you're doing amazingly well! ~ Kim
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It blows my mind that so many of us have shoulder problems. No surgeons talk about this very common problem after mastectomy. I don't even think there's research on it. Seems like the medical community could try to figure how to mitigate shoulder involvement. I've had bilateral frozen shoulder since I woke up from my mastectomy over 13 months ago. Worse pain than the BMX itsrlf
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Renee, I whole heartedly agree!! How is it that this is never discussed? My pain, while better, would wake me up at night and yes, was worse than pain from the mastectomy! Wondering if you were offered PT? Have you found anything that helps?
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