May 2016 Surgeries
Comments
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Hello everyone, so our most unlikely group is supposedly vanishing tonight. When did this month go? What a difference since the fear and anxiety at the beginning at the month and the post effects and treatment decisions still to make at the end. What a whirlwind of appointments, I would have gone to work half of the time after two weeks but with all the appointments It was just not possible. What a range of complications we had!Maya and Lori, I sincerely hoped we did not scared you too much. You will most likely have minor effects and certainly you will not get everything we wrote about. Remember, most ladies do not stop by when things are going well. Psychologically you will feel much better, this is the biggest weapon.
Maya, may your surgery be peaceful and wake up pain free!
Angtee, thank you for starting this thread and sneaking me in since I was too scared to write before. Thank you all for sharing your experience with all of us and for the very useful advices and encouragement.
Valstim, great news about your results!
Raven , we should celebrate when you will be free of Flotsam.3 or 4? You were so unlucky with that bug and I wonder what the hospital would say now.
Hydranne, nice to hear from you !
As this journey continues and everything is not perfect yet( With TE how could that be?) I plan to be around for a while longer. ontinuing to check this thread for updates from all of you.
GreatKat, you are very quiet today, you must have a busy day
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Midwest - I posted earlier today, you just missed it.
As I said, I'm not leaving this thread just because of a meaningless calendar date. To do so would be a disservice to those still needing support and those who only recently had surgery in the last week or so.
I encourage anyone else who feels the same to stick around.
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I'm sticking around and my surgery was last July haha. I want to see how everyone fares! I am suffering with a ruptured disk in my spine that turned into a botched back surgery -- tentative new surgery date for hardware to be added to my spine June 14th. This is not cancer related, exactly. The tightness in my upper body put a lot of stress on my low back, where I suffer arthritis and degenerative disc disease, so my disc ruptured when I jumped and bent forward (sounds like I was doing gymnastics.... not quite). So since I was feeling pitiful I decided to come back on bco and help some other people (best way to stop feeling sorry for yourself). Now I'm invested in everyone!
Greykat I'll still be here making sure you make it out...
Raven Good grief. Honestly I am a FREAK about infection; I had the sweetest voice as I said to nurses: "DO NOT TOUCH MY DRAINS you need to put gloves on," and I had my own medical kit at home with a box of gloves and I wouldn't touch my drains without gloves. I bought a mastectomy shower shirt (like a raincoat with tight zippers and cuffs and neck) and didn't let any water get on my drain openings. And I still got a slight redness on my left foob and the TE had to come out early (at three months). They cultured and there was nothing there, but my ps wasn't taking chances and I love that about her. My point is you have to be so freaking vigilant and it can still happen. I'm glad you're feeling better!
Mytoystory boo indeed...
Angtee I suggest a visit to your primary doctor. Sometimes specialists who hand out a lot of pain pills get nervous, whereas a family doctor is more comfortable doing so. Also, valium is not a pain killer and I haven't heard of a huge valium addiction problem; honestly these doctors are SO hypocritical. They'll give you a particular drug for the rest of your life (Cymbalta, Lyrica, Paxil, Prozac) but when you're in PAIN from MAJOR surgery you can go bark at the moon. We need to send male doctors in to have their balls cut off and then tell them to take a tylenol cuz we're worried they'll get addicted to anything stronger. Ok calming down. Anyway, any muscle relaxant will help immensely with the fills -- better than a painkiller. Cuz the pectoral muscles spasming is what hurts. Valium is a great muscle relaxant. I did not like Flexeril since it gave me a weird mood change. Good luck.
All the European ladies who aren't getting oxycodone... all I can say is you don't know what you're missing, so that's good. It's yummy.
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Ispy - love your rant about the pain pills! My doctors were shocked when I told them I did not want oxycodone and tried to convince me to take it. Go figure! My husband got the prescription filled just in case, so I have a full bottle of oxy in my medicine cabinet (I took tramadol instead). I'm not sure what to do with them now....
I go for my first fill today, so will try taking the muscle relaxant. The first fill on my left side was a bit painful but then the next 2 were a breeze. My right TE seems to sit much lower in my chest, but has caused me more shoulder pain for some reason, so we'll see how it goes today.
Valstim - great news about the PCR!! It must be such a relief to know that the chemo worked.
Raven - I would think that the hospital would take this very seriously. How long do you stay on abx for this bug?
Today is 2 weeks postop for me. Looking back, I think I had a little more pain this time compared to last time, but also seem to be bouncing back sooner with more energy. I spent yesterday working from home, since I have a couple of reports due this week, as well as paper revisions that were due yesterday and an abstract for a talk I'm giving this fall is due on Friday. I was having some trouble doing any computer work last week because of shoulder pain. Using a mouse made it much worse. So I went to Best Buy over the weekend and bought a rollerball mouse. It worked great! I can also keep the mouse in my lap while working at the computer so that my arm doesn't become strained.
Maya - sending best wishes for your surgery today!
Many thanks to Angtee for starting this thread and to all of you for your fellowship and support!
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I plan on sticking around here too! I'm so grateful for all of you ladies.....the information and advice I've gotten has been invaluable. It's so comforting to be able to come here and know that there's someone else who knows exactly what I am going through.
As for the oxycodone.....I agree with ispy.....it's yummy
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Yeah, I'm not going anywhere either. Kind of loving this board and would miss you all too much.
Grandma3x, glad things are progressing pretty well for you post-surgery. It sounds like you're right on top of things. Don't try to do too much too soon though!
And to answer your question, the abx script is only for 14 days. I see the infectious disease specialist for f/up next week and my first question will be "How, exactly, do we KNOW that the infection is gone?" I would assume that they would do a new culture, but you know what they say about assuming....
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I appreciate all you ladies and I'm sticking around too. Need the support. And want to give support
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Ispy - Exactly - when I'm having a really cruddy, hard day and I know I can give someone a little encouragement for something they're going through, it helps. I hate the constant pain I'm in and it's made worse because I can't do my work or anything else I really used to do to feel useful and happy (can't drive yet) so I have way too much opportunity and reason to sit around feeling sorry for myself - and how this pain level is the BEST it is supposed to get for me - ugh - it's good to have a place to go to share and be able to support others too.
Ladies, I realized last night after another very painful day that with numb skin, I could probably cut through and cut these TE out myself if I got desperate enough. Then go to the ER for stitching back up. How about that for nuts? I was wanting to claw these things out of my chest. I've also hit the "this (recon) was a mistake" point. It's just so discouraging that the PS told me that the pain level I'm at will really only get worse through recon and then I'm hoping will go away after exchange surgery some months in the future? I can't possibly be in this kind of pain for life, right? This was supposed to be a life-extending surgery, not a quality-of-life-destroying surgery. I am too young for this depressing &#$%.
I want so badly to use some of the muscle relaxers and painkillers in my post-surgery stash. Then I remember I can't. They'll be going to the local police department's prescription take-back program for disposal once I make it through all this or they expire, whichever comes first. Hanging on to them just in case I get that desperate from pain that I'm willing to risk an ER trip again.
And I second whomever said about men and their testicles. Seriously. I ran into that flippant attitude SO much - it's 'just' a mastectomy and cutting through your pec muscles and compromising your strength and messing with your sexuality and body image, it happens all the time it's not a big deal. From men. From men who never, ever get told "well, we're just going to cut in, scoop out your testicles, replace them with a couple marbles, and you'll be good even though it changes everything". That attitude is a big reason I stuck to female doctors through this as much as possible. But my PS is a man...and he just gets to shrug it all off like they all do. They can't possibly understand and besides, this is their day job. As I ended up telling him at one point (in frustration) - I know to him this is just another day at the office, but to me it's life altering. Our perspectives are VERY different.
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Greykat, I'm SO sorry you are going through this. I also had a prophylactic surgery, although no BRCA mutation (but genetic analysis ongoing). I chose NOT to have reconstruction because the pain and additional surgeries were not something I wanted. I was only an A cup before, and super deflated after nursing 6 kids, so there was nothing special to hold on to in my personal opinion. Everyone just assumed I would want surgery. My husband was supportive of whatever I chose, and so was my surgeon. So it made my decision easy and I'm happy I did it.
IF you are contemplating NOT reconstructing anymore (and it's obviously totally fine if you want to continue the reconstruction), you might want to look at the going flat board. There are women there who have had their implants removed, and you could ask questions. Unfortunately, for some women, reconstruction did not improve their quality of life. It's a complex and very personal decision.
But PLEASE don't rip them out yourself! (OK, I know you wouldn't really do it).
And incidentally, I've been counseled to remove my ovaries and uterus because of a family history of ovarian and uterine cancers, and I'm scared to death to do it because of the side effects of surgical menopause.
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GreyKat, I don't recall if you ever said where you're from, and I'm sure the thought of taking a different direction with different surgeries is a nightmare right now, but I would encourage you to consider finding a PS who will do over-the-chest implants. Check out these two threads for more information and a list that another member has compiles so far of surgeons who are already doing this type of reconstruction (including mine.) I can't fathom the pain that must accompany the under-the-chest implants. Just wanted to throw this out there as a thought for a potential solution down the road.
https://community.breastcancer.org/forum/44/topics...https://community.breastcancer.org/forum/44/topics...
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Thanks all, but I'm going to tough it out. I knew I'd hit a point where I said "this was a mistake". I'm just surprised it took me this long to get here. I figured before I went in that I needed to go with recon that would last me another 30 or 40 years before I'll be old enough to say "screw it" and stop replacing the implants and just be flat. I'm young enough that I won't be old for 40 years and if I make it that long, I might make it another 15+ as a flat-chested old lady who's just sick of surgery and no longer cares about having breasts. But not now.
I was not an A cup and I miss having breasts in clothes, so I'm still going with recon. I'm too thin/athletic for anything but implants. And I did discuss over-the-muscle implants with my PS - he does not do that surgery, it is much more expensive and some insurances still won't cover that kind since it's "too new", and mostly - for me - I rejected it because it is so new that they have no idea how it holds up after ten or fifteen years, and there is concern that the implant can wear through the dermis over time, meaning more surgery and I'm trying to avoid more surgery because apparently it never goes well with me!
I can put up with a lot as long as I can get my strength back, since I've always been the box-hauler, the furniture-lifted, the athletic one and the one who used to work out in a gym. My biggest hangup with this surgery was having part of my pecs cut free - which is the process - which reduces your strength across the board for the duration of implants. They say if you have them removed they can stitch the bottom of the muscle back where it belongs and you'll regain most of what you lost, except, you know, no breasts. But for serious athletes it can be worth it.
Moving on:
Does anyone else have some random skin discoloration from surgery? I have a few orange blotches on one breast that appeared right after surgery and don't seem to be fading. They were brushed off as "normal" but I can tell you they are definitely from the surgical trauma or whatever to my skin because I didn't have them before I went in the OR. I want to know if they'll fade away because it's like, hello orange! 3.5 weeks out.
I also want to know when this horrid underarm pain is going to go away. It's supposed to go away, right? I'm supposed to be able to move my arms without pain, so say my post-op instructions, and not allowed to drive until then. Well, I can move my arms all the way up, but it feels like super-strong pulling in the armpit and down my sides. I tried massaging the area today but it's so sore I can barely stand to touch it.
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Momof6: I removed my uterus at 42 years old and my ovaries at 45; eh, it's not that bad. Check out the E-string vaginal estrogen replacement; my bs said I could still use it since estrogen in the vagina stays there. I used an estrogen patch until I got bc, and then THAT had to go, clearly.
GreyKat: I'm making jokes about oxycodone, but honestly I was off of it within 3 weeks of my BMX; I got fills every week and I did not take any pain pills or muscle relaxants. And I drove. For work. Well, technically I didn't start work until 6 weeks after but I was driving at 3. My pectoral muscles are THICK and STRONG because I used to weight lift. So the ps could feel the needle go through my muscle like a piece of steak (yes, she said that haha), and my muscle would spasm and the pain would shoot all the way down my arm; she would pause, I would breathe, and when the spasm stopped she would push the saline (slowly slowly). There would be soreness later. I got really good at buying delicious ointments at the health food store this is one from Amazon: https://www.amazon.com/Soothing-Touch-W67367NXG-Na...=sr_1_1?ie=UTF8&qid=1464800346&sr=8-1&keywords=narayan+gel
Put it on your shoulders not your incisions!
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Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy
Bluebird144…NJJoined: Apr 2013Posts: 39313 hours agoBluebird144 wrote:
Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.
I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.
I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.
Knitted knockers website:
http://www.knittedknockers.info/
Fall down seven times, stand up eight.
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My first fill is done! 50 ccs - no pain this time. I took a flexeril about an hour before. I'll have 2 more fills on the right to catch up with lefty, then continue a couple mor times for both. Shooting for 325 ccs total.
Raven - I also asked about over the pecs implants before my MX in January and was told by both the BS and PS that they were not a good idea (too new). I have been reading the thread you mentioned above though and I think they are going to be the wave of the future! I was surprised to see that Justin Sacs at Johns Hopkins is doing them (where I had my surgery). You would think the BS would have mentioned it to me when I was asking about them.
GreyKat- have you asked the PS about going to PT? Can't remember if you had mentioned it or someone else here. For me, the underarm sensitivity was the worst but yes, it did go away. I don't remember how long it took but I'm at 4 months postop and have no pain at all on the left side. I know that seems like a long time but looking back, it seems like yesterday to me. I hope you are able to find something to help.
Ispy - thanks for that link!
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Ispy, you make us jealous talking about oxycodone ;-) I spent the whole day today without any painkillers. So far so good.
Today it was a very busy day with invitations for lunch, coffee etc that now I'm so exhausted. Tomorrow I'll spend the day at home, relaxing. The pathology came back, they couldn't see anything in the right breast, the left breast had a small DCIS. So it was a time bomb waiting to explode. The chemo worked beautifully.
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Greykat, I'm one week post op and the skin is orange. I forgot to ask what the deal with that was. I assumed it is bruising that will take forever to go away.
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MoreShoes: we can be orange together. It's *not* normal, I've been told, (along with being brushed off and told it IS normal) but I am going to ask about it at an appointment tomorrow just to see if it will fade over time. I just want to know what it is and if it'll go away.
I have contacted my PS office about physical therapy, but not for my arms/breast related stuff, but for the "surgical positioning error" nerve damage to my left hand/arm. He wants to wait longer than the anesthesiologists told me to "wait and see" and the numbness, weakness, and inability to use my hand is worsening. I am scared because if this is permanent it leads to a useless hand where the fingers curl into a claw, and/or chronic pain up the arm. I had no hand or arm problems before this surgery and I am scared that I may face decades of disability because they didn't put enough padding under my elbow, and angry because everyone is just shrugging their shoulders with this "there's nothing we can do" attitude. So I've contacted the hospital's patient relations people and tried to start that ball rolling. It's their fault, their liability, and presuming this has happened before, they ought to know if there's any steps to be taken to mitigate this before we give up and just resign ourselves to disability and lawsuits against the hospital. Really though I am scared and hurt and telling me to keep waiting or that nothing can be done is unacceptable at this point. I can't do nothing while this gets worse every week.
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Moreshoes, Great news. And hooray to you on no pain killers.
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Great news Moreshoes!
GreyKat, I keep praying things will lighten up in your world. You have to do what you have to do and the hospital should take responsibility for your situation! After all they did it
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Heard back from my PS's efficient nurse whom I contacted earlier today. She's going to figure out who does what and they're going to refer me to both occupational therapy (? differs from physical therapy how?) and a hand surgeon, although the problem began with the elbow, so I may have to push to see someone different. But will get a consult with someone who can talk to me about how to stop this from getting worse, if it will get better, what can be done. I hate that the answer for severe cases of this seems to be more surgery.
I asked about the breast/chest/mast/recon pain I've been having. Nurse said it is normal, and that she knows women who've had pain lasting out two years. Which is horrible, but "normal". I said no one told me this surgery and recon process had a good chance of leading to permanent pain or mobility issues, in fact I was told I was a good candidate to have NO problems like that because of my young age, good health, and no lymph nodes involved. And once again I got told that they don't tell anyone all the possible things that could go wrong because it scares women off from having the surgery. Whatever happened to the patients having a right to know?
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Surgery went well today. I'm resting comfortably in my new "home" - my hospital room - where I'll be until Saturday - hooked up to my antibiotic drip and making sure the incision site stays healthy.
I hope ladies stick around this thread and keep us updated! It's been so meaningful to be able to read your stories and realize there is no "one size fits all" treatment or experience on this cancer journey. Each of us have walked very different paths in our goal to be cancer-free, and we're bonded by going through it together.
Best wishes in your recoveries and upcoming appointments!
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GreyKat, my best friend is an occupational therapist. The difference between PT and OT is that PT treats the actual medical physical impairment, while OT helps the patient learn to do day-to-day tasks, possibly in new ways in order to work around whatever the PT may not be able to treat.
Grandma3x, congrats on the first fill! Glad it went well.
MoreShoes, congrats on the good pathology!
myToyStory2, glad the surgery went well and you're resting comfortably. So sorry you're having to go through this but I hope the abx do the trick.
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Praying for all of you with June surgeries coming up. I thought I'd share my surgery experience before I forget too much of it.
I had my Sentinel Node Biopsy the day before surgery, which compared to a regular biopsy was a walk in the park. My BMX w/ immediate Alloderm reconstruction was last Tuesday. Surgery was about 6 hours (4 for mastectomy, 2 for reconstruction). Hospital stay was easy overall...well cared for and well-medicated. They gave me Demerol instead of morphine since I had such a bad reaction to it after a surgery last year. I switched to oral hydrocodone pretty quickly and valium as a muscle relaxer. I was able to get up and walk on day 2 fairly easily and went home on day 3. I kept on top of the pain with those same meds for the first 3 or 4 days pretty regularly so the pain was manageable. Constipation is always the the worst part for me after surgery no matter what I try to do ahead of time to control it. I'm down to 1/2 a Hydrocodone a couple of times a day with some Tylenol, if necessary. I had 2 drains come out today...yay! The other 2 will hopefully be taken out by the PS in the next 2 days. It's uncomfortable when they come out but not bad at all. My pathology came back saying there was cancer in both breasts (originally thought ILC in one and DLIS in the other) so I'm definitely glad I went with the BMX. I'm so blessed it didn't spread so probably only hormone therapy in my future.
The best things I bought ahead of time were button up flannel-like shirts a size or two larger than I would normally wear, a couple of zip up jackets and some easy slip-on sweats/sleep pants. I didn't buy anything extra for the drains...just kept them pinned to the bra the PS sent me home with. My husband made a handy spreadsheet so I (or someone else) could write down what time I had pain meds. That was really helpful for the early "foggy" days. I've slept in the recliner most nights but can now sleep in the bed some of the time. I can't wait to sleep on my side and stomach again! Even though they don't look like what they will in the end, I'm really glad so far that I did the Alloderm direct implants...having another surgery ahead would be hard. With all of the stitches, my husband and I call them my "Frankenboobs" right now so it will be interesting to see how they end up looking
Also, having throat lozenges for the dry mouth in the hospital was really helpful. I took pjs to the hospital but never changed. Just used the robe I brought for over the hospital gown when I had to walk down the hall.
I don't know if my experience is normal or not but I'd be happy to answer any questions if anyone has them. Praying healing for you all.
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Raven - so I take it from them picking occupational therapy instead of physical that they want me to just accept this and learn to live around it and give up all hope of it improving? Because that's sort of the attitude I keep running into and that is unacceptable to me.
Imagine being in your early 30s and having a "surgical accident" destroy the use of your left hand and lower arm. For life. And no one who did this seems to want to do much beyond shrug and say "well these things happen sometimes."
I want physical therapy to try and FIX this or stop it from worsening and I want to see an orthopedic surgeon who deals with elbow nerve injuries from surgical positioning errors. If I have to throw a tantrum in someone's office, I'll hate to, but I don't plan to stop until I get proper medical care. This whole attitude of "can't do nothing just learn to live with a ruined left hand/arm" is completely unacceptable and I refuse to believe that until other possibilities have been tried.
I'm getting angry. What am I supposed to do now? I can't go back to my work with no left hand. I can't do what I used to do for a living. I can't do my volunteer work. I can't even hold on to a steering wheel, or even hold onto an onion to chop it up for dinner. They want me to accept being summarily disabled without even trying anything to improve it? I can't.
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It looks like I have shingles. I had a headache, nausea, and light sensitivity the day before surgery. Three days post op I had a tingling irritated feeling in my neck. Then a rash, now it looks raised and like it will start blistering. I'm sure the Tylanol with codeine, and now 800 Motrin have helped, because it's not really bothersome. Just annoying.
I'm beginning to feel like Job. Now I have boils.
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For everyone who is struggling with finding a good and cheap way to conceal being breastless, uni breasted, or under inflated during reconstruction, I have posted my cheap and easy solution in this thread:
https://community.breastcancer.org/forum/91/topics...
I've included pictures, step-by-step instructions and sewing suggestions. The bras and my adjustable fill solution allowed me to fool even my BS's nurse on my first followup after my BMX. It only takes about 30 minutes to modify these cheap sports bras to be the perfect mastectomy helper!
I hope my solution will help some of you address the all too common issue of finding symmetry and balance in your post-mastectomy appearance.
If you have questions, feel free to PM me and I'm happy to discuss the bra conversion process!
You can also find my instructions by searching my posts in this website.
Cheers!
LRGO
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LRGO, genius!! What a great solution....thank you for sharing that
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Dctexas - so glad you are doing well! Keeping a schedule for your meds is a great idea. I wrote everything down in a notebook, but I have read other posts from women who set an alarm on their phone.
GreyKat - I hope you do see a neurologist - I am surprised your PS has not already referred you to one! The PS can't possibly be able to diagnose you, or come up with a solution the way a neurologist would. My sister in law developed a facial tick several years ago. Her PCP told her she needed more calcium in her diet. When that didn't help, she went to a neurologist at her local hospital who gave her several possible explanations, but no real solution. He referred her to someone in Pittsburg, who took one look and within 5 seconds knew exactly what was causing it. She needed surgery to fix it but is fine now, and the tick is gone. Sorry for the long story! I think my point is that a plastic surgeon should not be treating your hand, and you may need to get see a specialist or two to find a solution.
LRGO - thank you! I have a couple of sports bras with pockets built in for a pad, but had not thought of adding the fiberfill! I go back to work next week, and was wondering how to camouflage my lopsided foobs. I'll give this a try
Happy Thursday everyone! -
Thank you LRGO for sharing! I have a few bras I can do this with as well. I love to sew but don't get much down time to do it. Maybe with this BMX coming up I can find time during my recovery.
GreyKat, my primary care doctor would be all over your situation. He believes patients deserve to get the medical care they need. Can you visit your primary care doctor for a referal?
dctexas, I'm happy to hear you are doing so well!
Momof6, shingles?!? Wow, I hope it remains just an annoyance and doesn't turn nasty! I wish you all the best!
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Momof6 - That sounds awful. I don't know much about shingles but doesn't stress make outbreaks more likely? I hope as you recover they go away quickly on their own.
Had my first little baby fill today - a whopping 20 ccs. I am so glad we are starting small and staying small on fills if needed. I can definitely feel this, but it's not as bad as I feared. I have shooting pains from the areola where the needles went through, pulling at the center breastbone, and pecs are tighter and probably going to be more painful tonight or tomorrow as they complain about it, but this is all tolerable when compared to the nerve pain in my left arm/hand.
Speaking of which, the hospital's patient relations person had already called over to their office, I was told. Referrals will be made, but they can't guarantee how fast I'll be able to get in to see anyone or to OT. I said I'd rather see an orthopedist, and who I want to see - his page says he does elbows, hands, and shoulders and nerves along those lines, so he sounds like the right guy for this. And that I want PT instead of OT but that's apparently not flexible.
At any rate, some progress. Typing is mostly a one-handed affair now. Be nice to fix that...
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