October 2014 Surgery Sisters

Hummingbird, you are still in early recovery and it's perfectly normal for you to have useless arms and a tight chest. Those arms are why we tease about having T-rex arms. How long? It varies, even in the same woman one side might be more troublesome than the other. I've even found it varies from surgery to surgery. Sometimes it takes me at least a month before I turn the corner. This time I felt good after a week but at 4 weeks, still can't use my pec muscles without discomfort.  The iron bra feeling varies as well. Some always have it, some never do. I used to feel it come on for no reason...just all of the sudden I was tight, tight, tight. It's all part of the healing process. Those muscles and nerves have suffered a big injury. Gotta give them 6-8 weeks before you can expect them to come around to your way of thinking. Maybe longer. Pushing it won't work. You can't MAKE healing happen but you can sure prevent it or slow it down by stressing. Hang in there, sister.

Slavrich, I agree...Tylenol, pillows of all sizes and softness, and a recliner. With those three, we can do it!

Davida, swelling can take several months to go away. It's not at all uncommon for some areas to take longer than others. Very normal problem. What isn't normal is the redness. It could be as easy as a too tight bra or it could be a brewing infection. Is the redness there even if you haven't had a bra on for awhile?

As for lymphedema, yes we are told to avoid blood pressure cuffs and IV's whenever possible. If you are going to have your BP taken, it's recommended that you do it on your ankle/calf or on your wrist as a second choice. I get mine done on my right wrist using a small cuff or on my leg if they only have a large cuff. I avoid my left arm for everything because I've had more trauma on that side, not because more lymph nodes were taken in the SNB. (4 were taken on each side) There is a direct correlation between how many lymph nodes were taken out and the chances of developing lymphedema - a chronic, debilitating condition. Women who've had an ALND (Axillary Lymph Node Dissection) incision under the arm usually have more lymph nodes taken out. A SNB (Sentinel Node Biopsy) is usually done through the mastectomy incision and only a few nodes are taken so your risk of lymphedema is much lower. If your doctor has said your swelling is lymphedema instead of normal post-op swelling, then you should be on guard to avoid injections, cuts...anything like that can trigger an episode apparently. Some people have only a mild case, however, and can manage it with a compression sleeve and learning special massage techniques from a certified lymphedema therapist. There are a number of threads on BCO dedicated to lymphedema.

I'm on the pink bus escorting ForHisGlory to surgery tomorrow bringing a nice cup of warm tea when you wake up along with thoughts and prayers. Another thing I learned from this site was to use a shoelace (or lanyard) to hold drain while showering when you get home. Be sure they give you the drain measure cup-they forgot to give me mine and had to send fam. to go buy one. You're one step closer to putting this behind you and moving forward! Check in and let us know how it all went!

ForHisGlory

Hopeful's post made me remember something. This has been extra tough on you because your surgery got postponed. That's a HUGE dose of stress on top of the usual practically intolerable amount. My last surgery got cancelled out from under me as we were walking out the door to go to the hospital!! I had to wait for the rescheduled surgery from Sept 19th to Oct 3rd and those were some LONG days. I got through it and you have too. A good thing is that the anesthesiologist will be well prepared to take care of you now.

Well, it's 4am....and this is my FREE time - the hubby, the kids and even the dog are in....snoooooze city and I am...as usual, WIDE AWAKE during these wee hours.  However, I love the early hours for exactly this purpose....I have time to read and to think without interruption!!  Ahhhhhh - so nice and quiet!!!    

So, not sure if I am supposed to start a post or topic or how this works (and I know someone will surely let me know)...but I have some specific questions for you folks and I feel like, once I post this, the flood gates will open, sort to speak!!!  lol  I've had a peek at previous posts, etcetera and see that once a comment or concern is presented, the remarks just start to roll and roll!!  Which, by the way, is absolutely beautiful - quite wonderful to witness human nature at its best like this - caring, sharing, helpful during times of uncertainty?  AWESOME!!

Here are my particular "up in the air" topics, with respect to my surgery.  I've labeled/titled them for your ease of reference/response.  Would love to hear from these surgery sisters as my date approaches.  I would love to hear from any of you, in your own words - how did you decide?...what helped you decide?....now that you have decided, do you feel that you have made the least regrettable decision, all things considered? (lol - my bar is NOT high....I'm actually aiming for "least regrettable" decision for myself, because personally, I have no idea what "I" might feel like to lose one breast, two breasts, etc.  Likewise, I don't know how my own feelings might change in time.  Sooooo....I will decide my own fate on the basis of "what path or choices might bring me the least amount of grief for decades to come?" lol)

One Breast or Two?

Anyone opt for partial mastectomy AND prophylactic mastectomy at the same time?  Why?  If complete, any new thoughts or suggestions that became clearer to you after the surgery?

Lumpectomy or Mastectomy?

Anyone opt to PRESERVE as much breast tissue as possible?  I've been given options that make no sense to me, personally.  My guess is that anyone interested in preserving breast tissue (i.e. I don't think this is important to me?) is doing so for the purpose of a better reconstruction outcome?  Is this correct?  Or am I missing the purpose of this option.  Why would I want to keep a lumped-out breast with no nipple, otherwise?  

Anyone decide to go au naturel?  No reconstruction at all?

This is my preference!  I just want a FLAT chest with no future issues!!  Am I dreaming????  Let me know what you think!!!

THANKYOUTHANKYOUTHANKYOUTHANKYOU!!!!  Have a great day!!!!  

Hi, 

I was hoping I could be added to the group?! I had a BMX with immediate reconstruction on 10/27. One week out, I'm doing ok... Drains are so annoying but overall surgery went well and experience was not as bad as I imagined at all! So relieved its over and I'm on the mend!! Have to say, I had the nerve blocker others have mentioned in this thread and it was the best thing ever!! No pain at all when I woke up! Didn't need pain meds till about 8 hours post surgery and were off them in 24 hours from being home. Was discharged the next day and other than being more exhausted than I've ever been in my life... Feeling pretty good! Hardest part is not being able to do day to day things and the drains!  I have gotten so much info and support from following this group! Hope all are doing well & recovering comfortably! Thank you! 

Hi there!!!!  Wanted to jump out of my own thoughts for a moment (guilt, guilt...do not like to focus upon myself) and acknowledge yours!!!  I feel so much for all of you.  I am so happy to hear that you feel well post op....and hope that each day, you feel a little stronger, a little more....until this is just an old memory of one of those tough things you survived in your lifetime!!!  Wishing you the best!!!!  Keep taking good care of yourself!!!    I am cheering for you!!!!

PerAngusta- to answer your questions from my point of view. 

One breast or two? I think you have to look at your overall prognosis. If you have BRAC1/2 then I would def. do both breast. If you have a strong family history (no mutations) I would think about both but in my case I have a strong family history but opted for just one. My doctor said something that made me think, "why throw the baby out with the bath water". I don't have BRAC1/2 and I'm a 14 year survivor so my chances of get a new cancer are the same odds as anyone else so I decided to leave my right breast.

Mastectomy or lumpectomy? Again, personal. Me personally, I think a lumpectomy if you have that option. I lived 14 years with a lumpectomy. I had implants and my cancer side got infected last Oct. when they removed the implant my breast adhered to my chest wall. The only option to fix it was a flap. So I went through with the sGAP flap three weeks ago. Let me tell you, a lumpectomy is a piece of cake compared to a flap surgery. So me personally, lumpectomy every time. 

Reconstruction or not? I think that depends on your age and situation. With all the great technology I opt for reconstruction. My year with a prothesis was ok but it's hot a heavy. So reconstrution for me. 

I hope this help. All these questions are so personal to you and what you are comfortable with. 

Thank you sweetie/sacnaillady!!  That is EXACTLY the sort of information I was looking for.  You did help.  You've all helped!!!  And thank you ALL for the private messages as well - gave me lots to think about!!!  I think you are totally "bang on" when you remind that it is all subjective, right?  Age, lifestyle, etc.  It's all a matter of personal perspective and no matter how much I wish my doctor, husband, parents, friends, relatives or even you fine folks "could" help me to decide....it keeps coming back to me!!  I have been playing a virtual game of "hot potato" in my poor, tired mind and that damned potato keeps coming back into MY hands!!  And it's a hot little bugger!!!!  (excuse my language if it offended anyone....couldn't think of a better descriptor...."stinker", perhaps"???  lol)  In any event, my husband and I were talking and for me/us, it seems that I just really can't do this again....none of it.  I just celebrated my 49th birthday last week.  I have no body fat....a C-cup breast and other than cancer (lol - "just" cancer!!!  lol) I am now  and always have been blessed with good health and excellent body structure - still wear a string bikini!!  But honestly, my husband and I have been together for 22 years - solid relationship, three beautiful kids and none of us care whether my bikini top is A, B, C or flat. This was my original thought - but on the actual day of learning that my left breast had to be entirely removed???....I slipped out a question about reconstruction, lost my confirmed surgery date and my focus.  This is a personal journey and I suppose I've been "wishing it away"...but I have come full circle (I hope!!!) and strongly feel that both breasts need to be removed because it does eliminate a great deal of future "issues" for me (including, but not limited to - more visits to the hospital) and as for reconstruction? I'll cross that bridge some other day.  For now, I am happy just to focus on getting cancer GONE.  No more hot potato for me.  Never liked that game as a child, either!!!    God Bless you all - and know that I am always interested in listening to any words of wisdom you care to share.  And always cheering for you!!!!   

Thank you Slavrich!!  Again, dear sweet souls on this site.  You are all sooooo truly inspirational.  To all of you at home, healing right now...or even playing your own version of "hot potato" aka "isn't there some way that I could throw this off my plate?"....I wish you wellness and peace!    And as for me, I'm off to go shopping and have lunch with my husband and all three of our children!!  A little "retail therapy" might be fun, plus the sun is out!!!  We've had a crappy few days and I want to enjoy....today.  So, I will!!!!  No school or work today, anyway!!  We're gonna whoop it up - smile and laugh a little!!!  CHEERS!!!  Deep breaths!!!!  Head high!!  I can and will do this (even if PMS tries to bring me down!!! lol) and I refuse to miss one, single happy moment.  Today, I am not having surgery!  Next week is far from today!!!    Carts before horses, crossing bridges and all of that stuff/cliches, right?  BTW - Per Angusta Ad Augusta "through difficulties to honors".  We'll ALL get there and this will simply become one of those "life lessons" that made us SUPER STRONG AND BETTER FOR HAVING SURVIVED IT ALL!!!!!    

Awww hummingbird 

I'm so sorry....I'm wondering why they didn't send away for onotype right from pathology though ? I have the same appointment Friday trying to remain positive but like you I am expecting chemo.... I likely won't sleep much waiting for Friday. Well let's hope you get low numbers for your bday!!!

Welcome Mlb. We are here to listen, do some virtual hand-holding, provide cheerleading talent, and share our experiences. We're all in the same boat, no matter what our individual diagnosis, and no one can understand quite like someone who has been there, done that, and instead of a t-shirt, we have scars to prove it. By the way, I have discovered TCM and have watched lots of old movies, which is much more satisfying than the rest of daytime t.v. I'm an avid reader but find that sometimes after a surgery I can't settle into a book. Don't know why but it's happened several times now. Committing to a two hour movie is about all I can manage some days.

Sacnail, you are doing great. What a difference 3 weeks makes, right? That seems to be the magic mark. Many, many of us see a definite improvement at the 3 weeks post op. What does your doctor say about the dead tissue?

Slavrich, so glad you have seen first hand the benefits of slowing down. Everybody tells you to take it easy but do we really know what that means? Some think that means instead of running 3 miles a day, only running 1 mile means they are taking it easy. Or vacuuming one room instead of the whole house means they have cut down their activity. I know we can count on you to give a first hand report to others who feel the need to avoid what we know to be the fastest road to recovery.

PerAugusta, the way I made my decision was to, at first, be open to every possible choice - no preconceived ideas because (as you too will find) I really knew nothing about breast cancer even though I thought I did. The public is woefully ignorant. I thought there was one kind of breast cancer...nope. Counting all the variations, there's about 20, each with their own preferred treatment. So first of all, you have to know what you have. There are articles on the main BCO page that will help you figure out what the pathology report from your biopsy really means. Your options narrow once you understand that...or perhaps options open up that you didn't know about. I learned that my cancer was in one breast (as per 2 mammograms and an MRI with contrast) and that it was confined to a duct but had characteristics that meant it was likely to break out and become invasive. It was located fairly close to the chest wall but with a lumpectomy, the breast surgeon could probably achieve the required measurements of clear margins all around the tumor. I read that the survival rates were similar between lumpectomy with radiation and mastectomy and if I chose lumpectomy it needed to be done fairly soon so the chances increased for clear margins. What treatment would be required after a lumpectomy? Radiation for sure according to the algorithms on all four of the top cancer centers websites I consulted. That's where my decision became clearer. As I researched radiation and the damage it does not only to your skin but to your other organs including your heart, I knew I would do what I could to avoid it. If I wanted reconstruction, I learned that radiated skin is difficult to work with and I could expect up to a 50% failure rate. Yikes! There is no doubt it is necessary in many cases and a lifesaver for many women, but if I chose mastectomy it would not be required for my particular diagnosis. Mastectomy was certainly not a walk in the park (what an understatement) and as I continued my education, I wished I could choose "None of the Above."  In the end, the radiation issue was so important, I decided on mastectomy. In fact, even though the other breast was healthy, I chose to have both breasts removed in order to avoid even the slightest possibility of having to go through all this again. In meeting with my medical team, I learned I would be a good candidate for having implants placed right after the bilateral mastectomy. I met with a plastic surgeon, found out he had extensive experience with Direct to Implant and that he and the breast surgeon often worked together. The PS acknowledged that complications could arise but convinced me he knew how to fix each one of them. Both surgeons were candid with their success/failure rates and provided me with their CV's so I could check out their education.  I had full peace of mind that I had done what I could to choose the right procedure and the right physicians. Here I am 14 months later, and I have no "buyers remorse." I made the right decision - for me.

After the surgery, the pathology report showed the perfectly healthy breast had cancer too. I was shaken to the bone by thinking that if I'd gone with the single mastectomy based on the test reports, I might not have known the other side had cancer until it was too late. My breasts were quite dense, and the cancer on the "good" side was hiding. Now I know dense breasts can camouflage cancer but it was not something I had read about prior to my decision. Some states even require doctors to contact patients with dense breasts and have them come in for testing other than mammography. (see website called Are You Dense?, also on Facebook) Every woman should know if she has dense breasts so she can not only get proper routine screening, but it can impact her decisions if she's ever diagnosed with breast cancer.

Perangusta, good for you in finding your own path. The thing to remember is that you can always change your mind about reconstruction later. I have a friend who's 2 yrs out from Chemo and BMX and said she's still considering reconstruction. If you look on the surgery thread you can read comments on a three I posted called "surgeon says right has to go". There were some very thoughtful comments posted there. So glad you have a plan in place! Enjoy your family and friends and stay focused on the positive and you'll do great! My sweet husband and I just celebrated our 25th in May, he and our son are the reason I'm fighting and plan to beat this down! Once you've made your decision it all seems clearer and more tolerable. 

Hello October Sisters! Hope everyone is doing well.  I have not read here once when I haven't grabbed my phone to make a note of a question to ask at my next appointment. Soooo helpful. I just typed a pretty lengthy post and then accidentally deleted it.  The last time I posted shortly after my BMX 10/24 it accidentally got tossed into spam/blocked, lol, but the mods fixed it immediately..just not sure where it ended up. I had my last 2 drains taken out today and was the happiest woman on the planet. PerAngusta--I do understand your feelings...I have the 17 year marriage and 3 kids scenario as well (also 2 boys, 1 girl) and have realized how low on the totem pole these boobs really are! I wasn't given any options other than BMX, but would have opted for both in a heartbeat, for many of the reasons stated on here.  I was supposed to get TE's placed right away for reconstruction but found when I woke up that they couldn't due to poor blood flow (I knew that was a possibility, so didn't freak out) At first I was disappointed..but now I just feel everything in due time, and I am happy for now to just heal.  I don't give a flip about walking around flat at the moment. My 53rd b-day is next week (should I change my screen name, lol??) and I just want to celebrate cancer free! I was happy to read about you enjoying your time with your family. Ok, now I need to study up on everyone else!  p.s.  Sacnailady--I am in your neck of the woods.  I go to UC Davis in Sacto. Take care, everyone!!

Hello Everyone!  Just wanted to say thanks again!!!  To ALL OF YOU!  I am feeling much, much better!  I kind of knew where I would end up anyway....just needed to hear someone else tell me that things would be okay!!  And you did!!!!  Each one of you!!!  I have a wonderful family, support network and doctors - but none of them actually HAVE BREAST CANCER....so as hard as they try, they just can't relate.  I needed to hear from someone who could - and I have!!!  I'm gonna sleep like a baby tonight!!!  I'm now on a countdown, right?  Each day will bring me closer to an END OF THIS....I hope!  And once it is behind me, the sky is the limit!!  I have enjoyed enviable breasts (perky, high and C sized) for many years now buuuuut, they weren't always like this.  Whenever anyone says "must be nice to have breasts like those" I always say "they're kinda NEW to me....they completely missed High School AND College years!!!"....lol  Now, I guess I'm just gonna go back to the old days - where flat was fine and in fact, beautiful!!!!!  We're all beautiful - in every size and shape!!!  THAT is entirely evident, in this thread and website!!!  xo  I'm sure I'll keep up on how the rest of you are progressing and in the meantime, feel free to contact, comment or reach out - I'd love to return the loving gestures offered when I needed a hand!!!  And oh, by the way, cracked my mother up tonight when I told her that I finally decided (two breasts, not one) and surgery is booked....she asked "well, how do you feel about losing two breasts?"....I said TOTALLY FINE AND JUST REALLY GLAD THAT WE WEREN"T BORN WITH THREE OF THESE THINGS!!!!!  Arrrgh!!!  lol

Hi all, just thought I'd check in,

OceanSky, as far as I can tell my implants are doing great...last week my BS said they weren't very swollen...I think the majority of the swelling is under my arms. I had actually hoped they were swollen when I asked, I guess he wasn't paying too much attention when I said I wanted to smaller...turns out I have 750cc rounds.  Still haven't looked at the "whole picture" but looking down I'm pretty happy. 

At 11 days out I'm not taking anything for pain during the day, and one Percocet at bedtime...I'm sure I could do without that but really enjoy when that warm fuzzy feeling starts taking over. There are a lot of areas that are still painful if I stretch or reach too far, and just as many areas that are still numb. The most annoying areas are the drains...they're in the back of my sides, a few inches below my armpits. Reading about drains before surgery I guess I assumed that the tubes came out of incisions instead of holes made just for the tubes...are everyone else's that way?

I had my first "outing" this evening (other than a dr. Appt.)...went to Walmart to pick up a few things. Was lucky to find a cart that rolled smoothly...simple pleasures!  I did feel extremely territorial and was ready to lash out at anyone that came within a foot of me!

Tomorrow I see my MO and start back on my Herceptin infusions. Thursday is my 2 week follow up with my PS and I'm hoping to get my drains out. Just curious where that fluid goes when the drains are out...does your body re-absorb it, or do you have to have bandages and gauze to keep from staining clothes?

Sandra...I was looking at your graph for the risk of developing lymphodema. I know that this is something I need to educate myself on but I'm just not ready to...just wanted to know if this is something to worry about right after surgery or is this a life long thing?

I'm sorry to hear that a few of you may be facing chemo. It sucks, but then everything about cancer sucks. As long as you stay on top of your meds (just like with our surgeries!) it is doable...y'all have heard me whine and freak out before surgery, but I never once got sick or even nauseous from chemo. 

My recliner has to go back by the 15th...best investment I ever made. Although I so miss my bed.  Thinking about trying it once the tubes are out. Can't wait to curl up into my fetal position and sleep on my side!!!