May 2016 Surgeries

Idk Grandma - back when I had my initial consult with my PS he didn't go over well with me, and I tried to get a different PS - I called the BS to see who else she worked with. I was informed by the BS staff that getting a second opinion and meeting with another PS to see if I could find one that didn't set off alarm bells "was not allowed". While I was stewing over that and arguing my way into getting the names of at least two other surgeons, I got an (independently sent) letter from my insurance blocking me from seeing any other surgeons for second opinions or simply for a better provider-patient relationship. Then I gave up. Apparently finding a doctor you can actually trust really isn't allowed. So it's this PS for life, I guess, unless I move.

The appointment with the GYN Oncologist went well. The doctor did not think that an oophorectamy was necessary but understood my reluctance to take the "wait and see" approach. And since I was having surgery anyway, she said it would be better to do both at once rather than 2 separate operations. Also, she can do it laproscopically, which should not add to my recovery time with the exchange surgery. Any advice pros or con?

Val, hope you are doing well.

I still lurk here and check in on you ladies. Sending good thoughts and vibes all your way.  I've made it thru 2 out of 4 rounds of chemo. Continued good thoughts and prayers being sent your way.

Brandi

No advice, Grandma....but glad you can experience some peace of mind by going through with the procedure. Two-for-one sounds like a good plan!

Keep on getting stronger, Val! We're all pulling for you!

Hope you're doing ok with your chemo treatments, Sensitive! Good thoughts and vibes back at you!

Any updates, tsoebben? Hope you're doing well!

Yay Grandma! and like Greykat says Boo for not getting it right. Isn't it scary how much is not gotten right?

Thanks so much for well wishes. DD is still typing for me, but the thoughts are no longer scrambled. Thanks for keeping this thread going. I love you ladies and think of you each day.

Glad you got a chance to just swim free and feel good for a while in privacy, Moreshoes. It sounds lovely.

And yay for thoughts unscrambling Valstim!

Ladies, things have been discouraging around here the last week or so. Turns out that when nerve damage causes muscle atrophy of the hand, forearm, upper arm, shoulder, and certain muscles of the back (sigh) for long enough, your skeleton starts realigning in terrible ways as the muscles that still have strength pull the bones out of place because they aren't balanced by opposing forces. I had to have a rib repositioned two weeks ago that had been noticeably lifted (the moving it back was not as bad as it sounds) and I've been trying to wear some corrective garments but the problem is they compress the area where the nerves are damaged, causing more problems! I'm so frustrated.

Hi, all! Just back from our awesome road trip vacation and wanted to check in with all of you. I was in an absolute internet dead zone while on vacation and couldn't check in at all, so sorry if I'm responding to some really old posts, but I wanted to catch up.

Granda3x, so glad to hear that your biopsy was benign! I'm glad you don't have to have the ovaries removed right now, but what a circus getting the right information to make the decision. Geez! Hope your trip to CA to see your grandbaby was awesome.

myToyStory2, after living so long with a TE on the left side, I'm with you on weirdly getting used to it. I guess it's my new normal and it doesn't bother me on that side nearly as much as I thought it would when facing the prospect of having it in there for much longer than we anticipated. And congrats to your Aunt on being pro-active on the genetic testing and catching the cancer early! It could have been a much different and scarier outcome if she hadn't moved forward. Congrats to both of you! Sorry to hear about the cording. Just one more damn thing to deal with!

I know I'm late to the discussion on scar treatments, but one of the interns at my PS office said you don't really have to use any kind of special or expensive lotions and that it's really the massage that makes all the difference. Oddly, my incisions don't bother me one bit, but the many scars I have from where the multiple JP drains were plugged into me drive me up the wall.

LRGO2016, congrats on the exchange! Hope the healing is going well.

Valstim52, I'm so sorry about the stroke!!! I hope the recovery is going well.

Sensitivehrt, thanks for checking in on the board with an update. Hope the chemo isn't too hard on you.

GreyKat, so sorry you're having "structural" issues now! What a vicious cycle this whole process has become.

As for me, vacation was a godsend. I actually was NOT thinking about breast cancer/reconstruction/infection/future surgeries 24x7 for a change and it really did me a lot of good. I'm sure it was just a timing coincidence but after the first week of my vacation all of the residual pain and discoloration from the serratia infection just suddenly went away. I suspect that would have happened while I was at home, too, but I also feel like getting out of my own head and out into the fresh mountain air was a big help. I never did get the swim poof thing to work but we didn't really have much chance to swim anyhow. It was too cold the first couple of days, then we had too much going on the rest of the time.

I go to see my PS on Thursday this week and am hoping to schedule the re-insertion of TE on right side for the end of this month. After the turn-around I had while on vacation I just have a really good feeling about it now – prior to vacation I was so sure that the new attempt was going to fail, but I'm in a much better place now.

Glad to be back. I missed checking in with you all!

Welcome back Raven! Sounds like you had a lovely time.

My lopsided TEs bug me most for being lopsided (one is firmly sewn in place, and the other has been dropping all along and goes up, down, and side-to-side) and that I can't "level" them without causing one bra strap to be WAY too tight, so that's a no-go. So lopsided is going to be The New Look For Fall/Winter! Other than that, I don't like them and they're ugly but I'm pretty well used to them. I just wish I could level them because they pull my clothes oddly and they're set so wide - much wider than my breasts were - that I have an unflattering broad look that also distorts how my clothes fit. (I mean, they're set so wide I catch my arms on them because they wrap onto my sides and stick out sideways past my ribcage, while I can lay my whole hand flat between them.)

One incision scar is regularly scratched and irritated to a blood-red look by, we think, a plastic suture tab on the loose TE that is swinging about. It is sharp and I feel this tearing pain and then the scar is angry red again. But there's nothing to be done, so I try to block it out. If I could hold that thing still in a tight bra or something, it would help, but noooo...ugh.

So yeah. Right now I'm more consumed with constant pain, exercises to fight atrophy & try and realign bones, and healing as best I can. I've learned a lot about musculature lately, all for the wrong reasons, but interesting nonetheless. I have joints that snap constantly and one the grinds and make squishy noises now, and a whole host of problems arising from this stupid thing.

And I'm not going to lie - sometimes I can't sleep and I have a lot of words I'd like to say to the surgeon I hold responsible for this nerve damage. I definitely have words I'd like to yell at the doctor who singly contributed to my picking up that secondary infection that's left me with lasting problems ALL of which could have been easily avoided. But it's not healthy to stew around angry so I go back to trying to find a way to hike up the lopsided TE to be level. It is woefully obvious. I'm starting to wonder if I could use a strapless boned shaping garment to push it up into place, lol. Or somehow use extra padding in a larger sports bra to make it look even. I can't imagine taking this thing swimming so hats off to you ladies who did.

Grandma3x, Tahoe sounds wonderful! My DH has been there several times for work and we'd love to head out there for a couple's vacation but just haven't had the chance yet. Maybe next summer!

By the way, I meant to mention.....my boys are both in the high school marching band and every year they have a "Pink Out" football game which happens to be this coming Friday night. The players and cheerleaders all have something pink on their uniforms, the student body and fans are encouraged to wear pink, the band members where pink gloves, and people can submit names down of friends or family members who are survivors. Those names are then read out during halftime and, if present, you can walk across the 50-yard line to be honored. I told my boys that under NO circumstances did I want my name mentioned and there's no way in hell I'm walking on that field. Being the awesome kids they are, they totally understood.

I'm not quite as "anti-pink" as some of you - it doesn't bother me all that much - I just don't want to do it anymore. F&#^ cancer. I'm sick of pink.

Agreed Raven. I'd be horribly uncomfortable with that level of public attention on something this personal, all Pink Things aside. I already feel like half the local medical population has seen me topless because "I'm Obligated To See How You Are Healing" (as one ER dr apologetically put it after asking to see my incisions) and the rest have to get updates on the breast reconstruction process, and everyone at work has some degree of general details, and my family all knows/gossips, and I have one neighbor who is a HORRIBLE gossip and she's been playing amateur doctor and offering her opinions on my complications... so.... really, the last thing I would want is a literal public broadcast. I kind of like it that the grocery store clerk doesn't know The Details Of My Medical Crisis. *sigh*

I really appreciate you ladies and the support I've found here because it's much more helpfully positive than the gossipy, snoopy, contradictory chatter that I get "offered" to me ("You're doing it wrong! Try this supplement! If you'd picked a better doctor this wouldn't have happened! This is your fault because you should have known! If you'd let me pick your doctor and manage your prescriptions this wouldn't have happened!") (The person who said that last one is also the person who has a history of "borrowing" other people's scripts and whom we pretty much don't allow in the house...)

I digress. Sorry. Yes. No pink for me this year. October 6 is my one-year mark and I'm going into hiding.

It feels so random - those of us who breeze through the process vs those of us who keep hitting bumps all along the way. I'm sorry you're hitting another bump, Raven! So this was the same PS who did your first surgery? How discouraging that he's not feeling more confident. I meet with my PS to make a plan next week, and what happened to you yesterday is how I worry mine will go - that we'll keep experiencing setbacks/disappointments from those stupid infections we caught. 750 cc's? Wowza!

GreyKat - remind us - are you in a metro area, or are you in an area with more limited resources? Can you switch Drs at this point? It just feels like you're due to catch a break, too. You've experienced far too much incompetence from your medical team and you've suffered too much.

Oh Raven, how discouraging. I hope it's not as bad as your PS fears, but yeah, the subpectoral TEs are a whole 'nother thing. Ask me how I know. =D Really, though, I hope it goes well and he keeps you informed about his plans. I can't imagine that kind of overfilling, either. It sounds so painful. But then I've got subpec TEs and you feel every last drop in those. I hate to think about going through all this just to have to opt for no recon bc muscle flaps are the only option and you don't want that. I hope it works out the "easy" way. Not that it's easy.

Toystory: I am in a major metro region, initially getting treatment at the top cancer center in the region, and now I've moved on to its associated hospital(s) and PS and physical/occupational therapy crowd. My BS was apparently known as the best in the city and people still describe my PS as "brilliant". To his credit (and some of my own) one side of me looks perfectly normal but TE shaped, and has a nice, neat scar that can't be seen from above. The other TE is the problem child and that side had a hematoma and lots of extra scarring and some tissue loss. Some of that was out of his control; you either grow blood vessels or you don't, and they plastered me with nitropaste and used heat to try save the nipple and did everything there is to do, but you know, if it doesn't work that kind of thing doesn't work. Apparently my skin is very thin and tears easily, too, which is not helpful.

That being said, even the best have things go wrong from time to time. I'm apparently just that one. There's no one for me to really switch to, even if my insurance would permit it, which they won't. I can't imagine switching mid-stream when recon is paused until next year or whatever. The PS is viewing the nerve damage as a sort of tragic accident / rare complication, from what I gather, and that's all anyone's going to discuss it.

Mostly the last couple weeks something(s) is going wonky with the injured nerves & I've begun getting worse and worse. It used to be that I'd have a couple bad days and then show improvement with each new exercise or change, and now I'm just getting worse. We're still trying to figure out WTH is going on. It's complicated by the fact that muscles have been weak long enough to allow for bone movement and joint laxity to develop, so it's like chasing my tail to figure out what's the source of what at the moment which might be contributing to pressure on the nerves.

I wasn't going to post long again. Oops. Sorry guys.

ETA: Grandma...oooo, pretty picture. I'd sit up there and never want to come down!

Here's your anatomical silly for the day: I was recently examined by a capable man brought in on consult whose speciality is absolutely *nothing* to do with breasts or cancer. My clothes were on (I know, right?). I quickly explained the ongoing background issue of the bilateral mast & breast reconstruction. He perked up at "reconstruction" and asked "Is that what those scars on your chest are from?"

Me: (wearing clothes) I have scars???

Him & other medical professional both: Points to several very thin, short white lines in my upper chest area, close to my neck, visible with my V-neckline.

Me: "No, those are old cat scratches."

I want to see how they'd do a bilateral mastectomy and reconstruction from the neck/sternum down. I shouldn't make fun because he's very competent in his area, I needed his expertise, and I liked him very much, but I'm still laughing. Medical specialization at its comical best.