September 2014 Surgery Sisters

Everforward - I was good the day after the exchange and basically self sufficient. The prep I would do, to make it possible to be alone with occasional visits, would have everything you need at counter level, make sure that anything in a jar or bottle has loosened lids, have front closing shirts and pj's and easy to prepare food items. My husband was with me the first two days only because it was a weekend and he was off but I would have been fine alone. I do think you should have a friend with you the evening that you come home just to make sure someone is there if you have any reaction to anything.

Minivan, I'm so sorry you're having such a rough time. I would be cranky, too, if my doctors were giving me the run around. The important thing is that you got the mastectomy. In my opinion, getting the chemo done next is more important than the exchange surgery. In fact, my plastic surgeon wouldn't even consider doing my exchange surgery less than 6 weeks after my last fill; she says the longer you wait the better the end result. (My BMX was September 9, my exchange surgery will be Dec 12. That's with 450 TEs filled pretty quickly.) Have you been able to meet with a medical oncologist? I'm also triple positive, and recent advances in medicine (Herceptin in particular) are actually *good* news for us.

This is all really scary and you've come to the right place to vent. We're here for you!

I am sorry you are going through this nightmare. This is your life and as they say the squeaky wheel gets the grease. If I was you I would be VERY squeaky!!!!

Minivan - I am so sorry that you are having such a hard time with the run around - this is criminal in my mind. That said, I whole hardily agree with everforward - you did the most important thing by having the mastectomy and you had nothing in your nodes. I know this isn't a sure thing - but odds are in your favor that it isn't floating around in your body. My MO basically told me that I was NED the day of my BMX and that everything else was insurance. My best doctor through this whole process was my PS. He was the most caring and where I felt the most comfortable. I think that it is so important. I don't know what to suggest you do except follow your heart. If I was in your shoes I would have a hard time deciding what to do also reference the timing of the exchange. My chemo start date was delayed by a couple of weeks due to healing issues with the BMX but had been schedule for 30 days after the surgery. I healed very quickly after the exchange so I am sure that they could have started chemo very soon after that surgery.

Are you in the US? I am wondering if maybe you couldn't get a patient advocate somewhere - maybe the American Cancer Society - or somewhere to help you in this mess.

Enim you will be in my thoughts tomorrow. I wish none of us had to do this.

Well ladies all went very well today, thanks for your well wishes. I woke up with a surprising peace, wasn't nervous at all, Thanks to God. I did videos of it all I'm planning on posting a vlog on YouTube. I will keep you guys posted. I had ice in my mouth letting it melt the entire time I was being treated. I took my nausea meds 2 hours after I left chemo and I plan to take them consistently for the next maybe 5 or 7 days. I am still drinking ALOT of water, I've rinsed my mouth with baking soda and salt twice so far today and will do once more before sleep and I drank a nice mug of warm mineral broth.. so we'll see how I do in the days to come. do once more before sleep and I drank a nice mug of warm mineral broth (all regiments to minimize side effects of chemo) so we'll see how I do in the days to come.

 You are doing all you can. Fingers crossed!

Ever, you will need to wait a couple of months. The swelling goes down but it's like an iceberg. On the surface he might look healed but underneath it takes a bit longer. The muscle needs to relax and allow the implants to settle into the pockets. The silicone inside the implant is held in place by the tight pec muscle. When the muscle loosens its grasp, gravity allows the silicone to flow towards the bottom so you no longer look like you have the top of a hamburger bun on your chest. You start to look like you have a more natural breast mound. Even with cohesive gels, gummy bears, and formed implants, it still takes awhile...I'd say two months at the very least, probably closer to three.

Recovery for 99% of people is fast and not especially painful. Most everyone, however, struggles with emotional upsets after the exchange. You've been through so much leading up to this point, and now you have what you waited for...but they look weird and you feel drained. Some of us have a longer recovery period. If your PS is going to do pocket work in addition to the simple exchange, it will take a bit longer to recover.  

Hi everyone! It's been QUITE a while!! I'm home, been resting a LOT....a little TOO MUCH if you ask me! But, it's helped. The visiting nurse is down to only twice a week, thank God......only to check vitals, and make sure I'm not getting swollen again, etc....which I'm NOT. YAY!

GOOD NEWS: I had my ONE MONTH after visit after having my final 5th drain removed last month after the whole cellulitis and lymphedema thing and guess what?! I GOT MY FIRST FILL!!!!!! HURRAY!!!!!!! I feel GREAT!! I am a smidge sore if I reach to the sides etc.....but other than that, NOTHING.....NO PAIN! I am lucky I guess! I guess NOTHING compares to the pain I felt with the infection, so I suppose I am going to be ok with the fills (fingers crossed/prayers said! lol) I got 50cc's and already had 60cc's upon leaving when I had my mastectomy and recon done in september- just been rocking the flat chest since then! Now I have a little tiny bit of cleavage and some fluid I can tap on which is pretty darn COOL!! I love it! I go back in TWO WEEKS (23rd- day before christmas eve! Merry Christmas to My TEMPORARYFOOBIE COCUNUTS ) and I will get another 50-100cc's which will bring me to halfway to my FULL MARK!! I am aiming for the allergan 410s in 425cc's FF(full heigh full profile) when all is done and finished.....I have 500cc expanders- it's SO NICE to NOT have them in my sides poking out and folded over!! Now they are nice and soft-ish.....I mean who are we kidding.....these suckers are NOT soft! LOL but they aren't un-manageable either, compared to what I have been through. I have valium If I need it. Took one expecting to go to sleep and wide awake, got to love it. Grrr......I had a drain for a total of 45 days!! That was a world record for my PS! lol. She was amazed that I called it my "Friend" and opted to keep it for another week when she felt "bad" for having to tell me the news that she couldn't take it out because I was still draining more than 40cc's a day.....I knew that, and WANTED TO KEEP IT!! I am NOT going back into that hospital room away from my kids darn it! I was LONELY! Kids aren't allowed in the unit because it's flu season, so I was LONELY! So screw that! I will keep it, learn to LOVE IT, and it became a part of me.....I took care of it, took great pride in using gloves & alcohol soaked nail pads to wipe from the top of the drain where my incisions were all the way milking down to the bottom into the bulb.....getting every last drop 3-4 times per day for 45 days!! I had NO drain for a total of 4 days throughout that time until I went into the OR and got my new drain.....I was glad to finally see NORMAL fluid drain this time and NOT blood!! except through that hole I developed my infection.....it's ok though. I still trust in my PS and know things happen. She's amazing, and I have a tendency to catch infections NO MATTER HOW CAREFUL I AM...LUPUS SUCKS!! I am doing GREAT! Great range of motion, still taking it easy, still not lifting much, still not doing things that "hurt" and know my limits......I make sure to do things slowly, and I "listen" now.....as I didn't before!! I am careful and watch what I do now, and FEEL what my body is telling me. I am proud to say, I am on the GOOD TRACK and though I dislike what I look like without clothing and cry sometimes, I LOVE my flat chest WITH CLOTHING!! I don't wear prosthetics! I rock the flat chest and wear my makeup proud and make it known I had a mastectomy and teach others about the amazing team of drs I have.

I pray all of you are doing well. I see a few of you are having a hard time. I will pray for you all.........I am SO SORRY you have to feel pain, or suffer at this time. None of us should STILL have to endure suffering. I am so very sorry for you all who are still going through things in your journey. My prayers and heart go out to you. It WILL get better. Trust in the Lord. There was a time where I truly believed I would NEVER ever get better! I came home only to be on full bed rest and antibiotics for a month and STILL not better.....still felt sick......I felt I would never get better. I still have days where I don't feel "great".....but I pray as hard as I can, and all we can do is trust in what we believe in, whether that's God, or in faith, or good Karma, or good spirits, or whatever it is that you believe in.....just BELIEVE that YOU CAN DO THIS!! You CAN!! I believe you can get through this trying time, and will be right here cheering you on every step of the way. My heart goes out to each of you who are having a rough time. (((((((((HUGE HUGS)))))))

Lots Of Love To ALL My September Surgery Sisters Who Helped Me Get Through. xoxo

Marie J Mello

EverForward, how did your exchange go? I hope you are recovering nicely..

Ever, sounds like what you have is normal. Foobs are wide and don't have the same projection as a TE. They will smooth out and look rounder and softer within the next couple of months. But they won't stick out more and will always be wide. My last set was put in in October and they are still making subtle changes that even my husband has noticed.

Hi. I am new here. I am 46 and I was diagnosed in June 2014 with Tubular Breast Cancer and on September 16, 2014 had a double mastectomy, nipple sparing, direct to the new "gummy bear" implants (with alloderm). I am stage 1/grade 1, but choose the DMX because my mother passed away from Breast Cancer and two of her maternal aunts had BC as well. I tested negative for BRCA genes. But for almost 20 years I have been having Mammos, Ultrasounds and MRIs. I was basically waiting for the shoe to drop and when it did, I was just done with all the monitoring and wanted them off. I am 3 months out from my surgery and still have quite a bit of pain on my right side. I feel like just is not gelling together the way the left side has. My right definitely has had a hard time - tissue and skim damage near the nipple. Then I was having a lot of back/shoulder/neck pain, so at 6 weeks I was using a heating pad on my back only, and must have rolled over in my sleep and caused a second degree burn on my right foob. It has been horrible. I don't feel the burn, but I have to care for it so carefully. I just went for a check up today with PS. She thinks it is healing slowly but I still have 3mm in the center where it hasn't closed over and she is fearful that the implant is/may become exposed. She then went on to tell me that she is unsure she can stitch it together there (damaged skin with poor blood flow) and wasn't all that positive she could do a skin graft. I am beside myself. I have been in PT since the beginning of October but the 'pulling' in my collarbone, neck and shoulder blades in unbearable. I still sleep on my back and have to take ambien to get through the night. During the day I just use tylennol/advil. Is anyone else still uncomfortable this far out? I feel this pressure to feel better already, but I just don't.

Dana, I'm 15 months out from a bilateral mastectomy with direct to implants. Who knew a heating pad could cause so much damage? You know, even if you have to start over on that side, you'll get through it. I did. I "acquired" a nasty staph infection from somebody or something in the OR and began running a fever shortly after being taken to my room. During the next three days the docs changed antibiotics and crossed their fingers that they could halt the infection. They finally brought in IV Vancomycin which slowed down the infection and even began to reverse some of the places that were teetering on the edge of tissue death. Two weeks after the BMX, the vancomycin had done all it could do so I went back into surgery.  I ended up losing three muscles on my left side from the front of my shoulder down my side, plus most all of the soft tissue and skin.The left implant had to come out because there was no longer enough skin to cover it. The plastic surgeon put in a tissue expander (no saline in it) and I continued on IV Vancomycin  for another three weeks at home with a visiting nurse. The plastic surgeon then gradually added saline to the tissue expander every week, stretching the already thin skin and muscle. Three months after the second operation I went in for #3. The TE was removed along with my perfectly good silicone round implant on the good side. Instead I got Allergan 410 ff 740 gr gummy bears. They are so much taller and covered up some of the worst of the low spots on my chest that were painful because there was no padding...just skin and bone.

Since then I've had three more surgeries including the final one, #6 on Friday. It took quite a while to repair all the damage from the infection and get my body to cooperate after muscle repairs were done. It's over now. The final tweaks were done on my left side and I had fat grafting on my chest.

Rather than doing fat grafts that might or might not find a blood supply in that thin tissue, has your PS talked about taking out the implant and putting in a tissue expander? That would take the pressure of that foob. The tissue would heal and be very gradually coaxed into expanding enough for a new implant.

As for pain, I've lived with it for 15 months and long for the day when I don't have to think about my chest or side or back. Unfortunately a number of us have pain and sleep issues for a while after surgery. I do not regret my decision to do the BMX. No one could have predicted a bad, drug resistant infection would complicate things. Like you, I wanted both breasts gone. Even though there is a small chance of recurrence, I have the peace of mind in knowing I've done all I can. Two mammograms and an MRI with contrast said my cancer was small and only in one breast. A lumpectomy with radiation was offered but I said no. I wanted both gone so I didn't have to have this hanging over my head. Plus, radiation scares me to death. It damages lungs, heart...no way I was going to do it. Anyway, the pathology report after the BMX showed a lot of cancer in my other breast. That breast was especially dense and the cancer was hiding.