May 2016 Surgeries

GreyKat

Valstim & Papillon - Glad to hear you two are doing well. I hope you both get lots of pampering and have an easy recovery!

HuskerFan

I made it home from the hospital yesterday after my BMX. things are going pretty well so far. Final pathology indicated 9mm IDC, 0/2 nodes taken. Trying to stay on top of the pain meds. I've got a wound vac on my chest so I have to carry a little pump around as well as deal with the 4 drains. Hope everyone else is doing well

SpecialK

raven - I have lost both a TE (shortly after my original surgery) which was out for seven months during chemo, and then two years llater lost the implant on the same side after an unexpected skin tear during a repair surgery, and the implant was out for 18 months. During the TE loss I only had to match the TE on the right with its surgical fill. I was allergic to the mastectomy camisole but I did use the puffs that came with it as a prosthesis. They come with a material like lambs wool, and you stuff the little fabric pillow with as much as you need to match. They were soft and lightweight, I wore them With stretchy bras like Coobie or Genie - they have a light pad in each cup and you can either just wear the pillow in the bra, or stuff it into the pad holding part. If you are worried about the pouch shifting you can pin it to the bra. I don't recommend using a mastectomy bra - they are designed for no breast, or a natural breast, but they are hard to fit to a patient with one TE. I found the soft bras to be a better solution. If you didn't get a mastectomy camisole you can just order the puffs - I will link below. So sorry you find yourself in this situation - but it will work out.

http://www.tlcdirect.org/Adjustable-Triangle-Featherweight-Foam-Breast-Form-Mastectomy-Prosthesis-American-Cancer-Society-TLC-Direct?did=42

I_Spy

Raven: SpecialK has great advice on this sort of thing. Let us know when you're out of surgery and resting, we will be thinking of you and wondering how it went. hugs.

WenchLori

Raven, so sorry to hear you are still having complications. Good luck on your upcoming procedure!

GreyKat, it's very scary to realize that you almost died! Wow! I hope you are on your way to recovering with no more sidetracking!

Huskerfan, a wound vac?! Oh my goodness! I hope all goes well for you!

SpecialK, thank you for the link, you never know when you may need additional goodies to help us thru all of this.

Yes, valstim very well done!

It looks like all the surgeries for May have come to an end and I hope everyone is recovering comfortably! Praying for no more complications for ANYONE! I will request prayers for all in the morning!

NattyB

Valstim - so glad you are recovering well so far! Praying for good path report for you!

Raven - f just f. so so sorry. There has got to be something wonderful on the other side of this - I just have to believe that. I will second the genie bra (Grandma3x - they have them at Wal mart and are cheaper on amazon (3 pack for 14.50 ish - but I test drove the Wal mart one first. I can only wear them for half the day now - my skin is weirdly sensitive and of course my port and it's tail are in the strap line so that skin is going to need to toughen up before I cam wear them all day. They have removable pads in the cups - maybe you couls take one out and double it up on the other side. I'm sure if you are tender the fluff inserts and camisole that Special K mentioned might be the ticket. I'm just so so sorry you are having to go through this - totally not fair.

Mom4four

Raven and everyone, there is a place I heard about and got a set of prosthetics from. It's allied "Knitted Knockers". I got mine at knittedknickers.org but they are also at www.knittedknockersusa.com and I think around the world. They are free and very soft and easy to change size and shape.

Valstim52

Raven, so sorry. Gentle hugs to you.

Midwest

Hello everyone,

Raven4mi, my thoughts are with you, I hope you are recovering well again. There will be light at the end, try to keep that in mind. Gentle hug to you!

Papillon,Valstim52,HuskersFan,MoreShoes, glad you are doing well and surgery is behind now, no more pre-surgery anxiety. Valstim52, great news about the treatment working!

NattyB, nice to have you back and to see you took the right decision going with the bilateral.

GreatKat, you are so strong and doing so much better now, remember one step at a time, maybe try to not think about the fills too much. It does not take long at all and the doctor can make it less uncomfortable (I had 2 fills,the second one did not fill anything at all as compared to the strange sensation for the first).

Anyone else dealing with underarm cording? Consider yourself lucky if you don`t. It is really painful when stretching in certain positions and, as a result, I do not have full range of movement in my arm. It did not get better after 2 PT sessions and exercises at home.

Wish everyone a nice Sunday!

raven4mi

Valstim52 and HuskerFan, I'm so glad things are going well for both of you.

Thank you everyone for your kind words, gentle hugs, and support. Surgery to remove the expander yesterday was short and sweet – I went to the OR at 10, went into surgery probably around 11:30-ish, and was home by 1:30 in the afternoon. I do feel LOADS better today. The PS told my DH after the surgery that the fluid collecting around the expander was really bad and it's a good thing it's coming out to promote the healing process. The pain from the infection is completely gone. Of COURSE, I still have a stinking drain, but really the only pain I'm having is from that incision site. So since I'm only on Tylenol and the antibiotic to treat the infection, I'm treating myself to a Memorial Day margarita. So there.

And thank you for all the advice on bras and inserts. I just asked my poor DH if he would run to Walmart to buy me some Genie bras and I got a true "deer in the headlights" look in return, but then he cowboy-ed right up and said "Sure! Whatever you need!" Love that man so much.(I'm going to have a girlfriend go – just couldn't resist asking.)

Coming to terms with the ol' uniboob – forced myself to have a good look this morning and have shed a few tears and I'm sure there are more to follow, but I just keep reminding myself this is a temporary setback and things will all work out for the best in the end.

grandma3X

Great to hear that you are home and feeling better, Raven! Enjoy the rest of your holiday weekend.

Mom4four

Raven, so glad the pain is lessened hope your recovery is smooth sailing now.

Midwest - I get my first PT appt on Tuesday and I am excited. It will be a full 4 weeks after surgery - I wonder why I had to wait so long. I think I have mild cording but they will tell me. I do not have range of motion or strength back at all.

Does anyone else have good energetic days followed by very low energy and feeling not great days physically? I thought it was because I was overdone it then recovering but I have been so good and I am still getting this ebb and flow of energy.

SpecialK

Keep in mind that it takes about a week per hour of anesthesia to fully feel normal. after surgery. After BMX my turning point was 5 weeks, and I experienced high and low energy periods during that time. At five weeks I had far fewer low energy ones though. Unfortunately, for many that period sometimes coincides with the start of another phase of treatment, so right as you are resuming some normalcy you have to deal with a new set of issues.

HuskerFan

I'm day 3 post op and feeling better than I thought I would be! Taking a combo of oxycodone, tramadol and x strength Tylenol along with antibiotics. I haven't had any overwhelming pain. Has anyone else ever had the wound vac over their chest? Now that I have it I realize that I've never read about others here having one! I kicked DH out of the bed so I could have all my pillows propped up around me at night. All in all, my experience has been pretty good so far. Sending hugs to those who are struggling.

grandma3X

Huskerfan - I'm so glad you are doing well! I've heard of the wound vac but never seen one - does it take the place of the drain-bulb combo? My DH and I were just commenting yesterday that the whole system seemed to be really archaic (not to mention barbaric) - to have these things hanging from my armpit for a couple of weeks that needed to be tended to every 12 hours! I had never had surgery before, except for a C-section back in the 80s, and never knew about the whole drain thing until I had my MX.

HuskerFan

grandma3x, unfortunately no! I have four drains. I would compare the wound vac to a compression bra but it only covers my chest and doesn't go around my back.

WenchLori

Yay Raven! I wish I were closer I make the best margaritas in Texas (now Indiana)! So I'm told anyway. I have to bring it to parties by the bottle full! Enjoy!

Papillon1

That's interesting specialk - to allow a week of recovery for each hour of anaesthetic!

anyone else been prescribed Valium as a muscle relaxant? Might be just because of my Immediate implants - and the fact they are free and could move if I clench up too much - I thought that was a bonus!

Other then the odd Valium it's only I buprofen and paracetamol here 5 days on. And I'm not taking them as often as I could so that's great. My incisions don't feel painful but the side where a drain was does, if I touch it. But I have some Stitches there too so maybe it's them. The doc said she added stitches on the side to stop the immediate implants sliding under my armpits since they are relatively large (only a c cup ).

Thanks greykat. I'm not sure about being pampered.. My eldest (7) has been away on a sleepover with his bestfriend this weekend and came back in such a bad mood...tantrums all over the show... I suspect they had very little sleep!!! Am looking forward to the kids in school tomorrow.

On the day following my surgery I thought about you greykat and how you had worked out your abs before the op - very wise. Five days on though and wow my abs have woken up! I hadn't known they were there for the last 5 years. Suddenly sitting up is getting so much easier!

Have hayfever - sneezing not is uncomfortable but not painful. (Just in case anyone worried about this, I did more surgery!).

Happy healing all and I wish those of you with further treatment all the luck in the world. Xxx

raven4mi

OMG, special shout out to SpecialK and NattyB for the Genie bra recommendations - my girlfriend ran to Walmart and scooped up a couple for me and they're really going to work out well. I feel like I can go out in public now and not be completely self-conscious and it's such a confidence booster after everything I've been through, so thank you so much!

Very interesting idea about 1 week of recovery per hour of anesthesia. I figure that after four surgeries I've got at least another 2-3 weeks before I'm really back on my feet again counting back to my original surgery on 4/15. Something to look forward to!

GreyKat

Raven - glad to hear you're feeling better and feeling up to handling this latest complication. You sound like such a go-getter!

To all you lovely ladies (I'm sorry I lost track of your names) who've been encouraging me recently - I really appreciate it and I've really needed it. Thank you.

RE: Energy swings: I posted a while back about that too - I'll have one good day of high energy, high mobility, followed by a total crash of pain and fatigue. But the cycle is improving 3 weeks out - I still get really exhausted if I overdo it, but the pain is WAY better and more tolerable. I can literally feel myself healing as I go along and do my stretches and stuff.

Papillon - My PS relies mainly on Valium for the reconstruction process as a muscle relaxant. It's part of the drugs that half-killed me and landed me in the ER, so I can't have any, which is screwing with his process. I gather he prescribes that stuff like candy to his patients. It works, too, for most people. Wish I could tolerate a full dose because it would significantly lessen the pain.

ARMPIT CORDING - what IS this? I have pretty good mobility and my muscle bruising is finally healing but my armpits remain SO painful that they are what is limiting my overhead stretches and causing problems in showering - not my chest or pectoral muscles, but my armpits screaming in agony. I've been wondering why on earth this is a thing because I didn't have any lymph nodes removed or biopsied, but the BS definitely scraped tissue out because I have numb spots in both armpits. But the rest of the area is so sore it is restricting my movement. What is cording? Is this it? Educate me please! Can I ask the PS about something to do to fix this? It's not improving like everything else.

myToyStory2

Had my BMX on May 16th and everything was rolling along fairly well. Got 2 of my 4 drains out on Friday and couldn't believe how much better I felt....now I'm anxious to get the other 2 out! Then yesterday I noticed the incision site on my right side was starting to get bright red. Checked on it last night to find my camisole with significant blood stains. Called the on-call dr (of course this happened at the start of the holiday weekend!) and he didn't think it was an emergency, but worrisome enough to visit him this morning. Headed to the hospital and he determined the skin at the mastectomy site is struggling due to the aggressive fill I had during my surgery (450cc). He used the analogy of making a fist and looking at your knuckles vs an open hand. It was pulling the skin too hard to heal effectively. Took out 100 cc from the right side, bandaged up the sore, and sent us home with a new antibiotic prescription. It will set me back a couple of weeks, but I'm just relieved that I came home with the TE still in....I was definitely starting to imagine the worst case scenario!

Lori - you'll have to share that amazing margarita recipe! We're all going to need a good drink after we get through this!

Midwest

• GreatKat,sorry, do not want you too worry about cording too. Chances are you are unlikely to develop it as it is mostly occurring after lymph nodes removal. Here is a link, if you want to read about. I also have the underarm pain at touch , thinking it was related to SLN but it could be also just from the breast tissue removed. I guess it is not considered major surgery for nothing. What is perplexing to me is the much better range of motion and less underarm pain I had the very first days post -surgery. It is probably the scar tissue, something I was not familiar at all. Maybe other sisters have more to say about it. It is hard to really accept that it might take several months to completely heal.

http://www.breastcancer.org/treatment/side_effects...

Raven , so glad it was a quick procedure and you are feeling better now and you found a good bras so soon. You totally enjoy that margarita!

Papillon, glad you are home! I hope your children will remember to be very gentle with their hugs. Were you given any antibiotics at home?

MyToyStory2, too bad they had to take some out but this should prevent more complications.Did he ask you before about the surgery fill volume?

grandma3X

I thought the underarm pain (for me it's like razor burn - is this what others are feeling?) was because of the SLN biopsy. Interesting that you also have this pain too, GreyKat. For my MX in January, the underarm pain started the second week and then slowly went away - I don't have the pain on my left side anymore, but now that I'm in my second week postop for the right side, my armpit on that side has become extremely sensitive. The sudden heat wave is not helping - my underarm skin keeps "sticking" - and deodorant is not an option, so I've resorted to powder.

Momof6littles

I know I asked about stretches and exercises post bmx. Grandma3x, you posted a link to a video of some. I started the day after surgery (really hesitantly because I was sore), and am so happy I did. It has really helped. I really recommend these:

https://www.mskcc.org/cancer-care/patient-educatio...

Edited to note that these are exercises for those without reconstruction. They have a different page for those with reconstruction.

HuskerFan

for those of you wearing the Genie bras and Coobie bras, are their size charts pretty accurate? I remember reading somewhere that you need to size up.

I_Spy

GreyKat you've been through so much! Just wanted to say that I hate drugs so much I refused all muscle relaxants during my fills; and I used to weight lift so my pec muscles are thick and tight (the PA said she could feel the needle going through my muscle when she doesn't normally). I ain't gonna lie -- there was some muscle spasming involved, and it hurt, but I lived through it. I just had an agreement with her: she stuck the needle in but did nothing else until I told her to go ahead. Usually there was a spasm just from the needle going through (realize my muscles are THICK and tight) and we just waited for it to pass. Then she pushed the saline very slowly (that is the key), and she stopped when I told her to. I would be sore that night. Nice and slow is the key both while pushing the saline and in the amount of saline pushed at each visit. It is not a race to see how fast you can make your foobs big!

I would like to recommend something I've discovered since; this would be used when you have ok to massage your incisions (so not yet basically, but soon): castor oil packs. You can google it, but you basically soak a soft cloth in castor oil, put it on your chest/shoulders/abdomen, and put a heating pad on low over it (careful girls your foobs have lost sensation so you won't notice if it is too hot and burning your skin) and a towel over that. I add a little lavender essential oil. then you rest in your recliner and deep breathe. There is something about this that has totally relaxed my pec and shoulder muscles, even more than massaging and stretching. Again, don't do anything with open wounds, but add it to the stockpile of things you can do when given the ok. It has helped me a lot with muscle spasm and relaxing my pec muscles (I've already had my exchange surgery and righty does NOT want to relax; but this has helped a lot). You then save the castor oil cloth in a sealed jar for another day.

Raven good for you for handling the heck out of it and looking on the bright side. And remember girls: your significant others love you because of who YOU are, not for your appendages; any love for your breasts has been because they were attached to YOU, and you are still there. I love that Raven's DH "cowboy'd up" (but in the end didn't have to go). Go cowboy!

GreyKat

MIdwest - thank you for that link, it's very informative. My pain felt like razor burn in the armpit, yes, but has progressed to general pain - I can touch it now without a nausea-inducing pain level - but I also feel like there are guitar strings running down from my armpit to my sides stretched too tight for me to move my arm past a point. And that is getting worse as the weeks go on, not better. Although the actual armpit pain is getting better, and I expect will eventually just be numb. No lymph nodes, but definitely tissue removed and skin scraped.

Ipsy: Thanks for your empathy about fills. My TE ports are directly under my nipples, and apparently lower than the muscle that I can feel, and since I have retained some nipple sensation, I am dreading the needles, whether they go through muscle or not, because nipple needle pain! I've already been put on a reduced fill schedule because I can't have his drug cocktail to handle the pain. I'll just grit my teeth and go through it like I have all of this. I don't really have a choice.

You know, we - everyone on this board - are a lot stronger than we seem. The poisons we take, the knives we face, the pain we endure - all to live, just to live, for whatever reason we have to live - I wish the world could somehow harness the collective power of the human will to survive and put it to good use. We fight for our lives here in grim little day-by-day steps, and wouldn't it be nice if we could all be free of this and fighting for something else instead? And that's my Big Random Thought for the day. Feel free to ignore it; I'm just thinking out loud.

SpecialK

husker - I have to size up in the Genie, but Coobies are pretty much a one size fits all. They do have a regular and full size - the full size has more coverage, higher sides. I originally had 650cc implants, was a 34DD reconstructed and could wear a regular Coobie. When I lost the left implant and wore a prosthetic I used a full size Coobie as it held the prosthetic better. If anyone orders a Coobie online use this code for a discount - Obsessed - it allows you to purchase 3 and save $20. Coobie bras are very comfortable and work well with both TE and implants.

greykat - I had fills on my recent TE that went straight through the nipple, weird sensation, but not pain exactly, although I have less sensation than you do. Ask your PS for a prescription for EMLA lidocaine cream. Put it on an hour prior to the fill, and cover it with plastic wrap. It will numb you and help with any discomfort. I also advise low and slow for fills - for everyone, not just you. It takes longer but it hurts less, and is easier on your skin and muscle.

For cording I would advise seeing a LANA certified lymphedema therapist, they can help with resolving cording and advise exercise that won't raise risk for lymphedema. The guitar string analogy is what cording is, the hypersensitive skin is something else and usually improves with time, as does a significant degree of numbness - at least for most people. I had complete axillary dissection five weeks after BMX with bi-lat SNB, so a double whammy to the axilla. I was numb and had the pins and needles from underarm to elbow for a long time - I found that wearing things with sleeves was helpful - skin to skin contact was uncomfortable. However, at about six months things were much better, and at a year, other than the underarm itself, all felt normal. I only notice the numb underarm when I shave.

raven - yay for Genie bras! If you decide to get one of those poof prosthetics from that link you can actually mush it into the Genie bra pocket thing that the pad is in. I just went out today and got a new one too - I still have dressings but can't use tape due to the allergic reaction. I can only use iodine ointment directly on gauze as I am allergic to topical antibiotics and, now it appears all surgical dressings too, and the iodine has trashed my nude colored Genie, so I got a black one today.

I_Spy

yes Special K I forgot the lidocaine cream! she started using that, letting me sit for 10 minutes, and then she did it. It even helped with the muscle spasm for some reason. I can't comment on the nipple pain (but, ps GreyKat, of COURSE they are right under your nipple, because...just of course they are. geez) -- because I have no nipples. I am Barbie.

Papillon1

hi,

No I dot have antibiotics at home. Had the for 3 or 4 days in hospital. Drains were out on day 2 post op. Funny how different countries are so different