November 2014 Surgery Sisters

Awest - Sorry you were up at midnight with pain, but so helpful to find support here when you need it!

When I get pain, it is in the back on the cancer side too. My first round with pain was after fill 3 and it was achy pain with a few twinges of nerve pain. This week (fill 4() I've only experienced the nerve pain twice. I have been able to deal with it, but like everyone else I'm ready to get this show on the road and over. In the past I've used 5% lidocaine patches for pain while recovering from a broken back. You may want to ask your doc about adding that to your choices for pain relief or they also make patches containing NSAIDS.

The entire pain concept makes sense to me given what we are doing to ourselves byinserting a "breast" into a space previously only occupied by tissue. Given that the entire chest area is designed to be held in place with bones, ligatments, tissue and muscle it makes sense that when we monkey around with one part of that equation it throws the other parts off balance. I do find that when I remember previous PT experiences and focus on posture and activating my trans abdominal muscles my back feels better.

Think I will have 2 more fills as I am at 400cc on the cancer side and 450cc on the other. One more to expand and then one on the cancer side only to balance out. Surgeon will schedule exchange surgery on my next appt (OR schedule is busy at MD Anderson and that means I'll probably get a slot about 6 weeks out) and I'm hoping to be placed into the non-chemo portion of the ATEMPT trial for very early stage HER2+ BC so chemo won't de-rail my exchange surgery.

Hope today is a much better day for you and all our November sisters!

Oh Alexa, I wish I could wrap my arms around you. That is awful and I am so sorry you are going through this. I just don't understand myself. Why does it have to be so painful? I promise I don't think I've hit that pain level and I'm already miserable at times. If it was worse.. You poor thing! 😩

I'll be thinking of you and saying a prayer for relief. Something has got to give! Wait.. Have you tried vodka yet? 😜

Thinking of you!

Mom2threeboys - it's good hearing from you. Keep us posted. I enjoyed your message.

Alexa, I am so sorry to hear of all the pain you are in. I wish I could be there to help you. I don't know what I could do to help other than give you some ice packs and or heat packs. I know when I was having pain I would stand under the hot shower and that helped me. But of course my pain wasn't as severe as yours. Maybe just being there to cry with you would help you. I don't know.

Alexa, where do you live?

My Ps won't even schedule my replacement until I finish rads because the rads will make my breast shrink a little and he will have to go in and adjust that during the replacement. He has a lot to adjust because I am lopsided and one is larger than the other. I think because my tumor was so large the bs has to take more tissue from that side than the other during my bmx. Sorry ladies, that may be TMI.

Have a great night everyone.

Thanks ladies for your support. You are "here with me" and it helps more than you could ever imagine!

I'm seeing my regular dr today and supposed to make an appt with an ortho/back specialist. I think it's just too much pressure from my TE hitting a nerve somewhere. Or my old shoulder injury is flaring up (did she take a ct of my shoulder? Noooooo)... Or possibly some sort of LE... The ER dr was about 12 years old. It was an utter waste of time (and money).

I have an apt with my ps who knows what's going on but not until Tuesday. I will wish this weekend away like you can't believe! I'm going to ask him to either load me up with painkillers or take some fluid off. I've been at 800cc for 3 weeks and we can go ahead and schedule my exchange for the 6 week mark. He can put in 900cc implant then. Drs do that all the time. My skin can handle the expansion but my body is NOT agreeing with this TE!!!

If he disagrees, Mom2threeboys, I WILL go to pain management. I know a great group... So for now I'm just sucking up whatever painkillers they gave me, I wrapped it up again because pressure seems to help (weird when pressure seems to be the problem but whatever). I'll take a hot Epsom salt bath and really let it relax every day. I keep moist heat on it a lot, I will switch it up with ice.

This morning at 6am the pain was ungodly. It actually brought me to my knees! It felt like I was set on fire. I've never felt pain like this in my life. I'm sorry if im over sharing. I really don't want to scare anyone who reads this like ever so please know this pain is NOT typical! It could be my fibromyalgia making things much worse. I just don't know... Mommacat4 please don't ever worry about TMI here. This is the place where TMI is exactly what you need to share. My right Breast was 1200grams and now we're trying to mTch that to mt TRAM which was about 600 grams of tissue with a 300cc implant added... Who knew there would be so much math involved!

My husband thinks it might be shingles as it is the typical area, but not a typical presentation. I had chickenpox when I was a kid and again when I was 22. So next week I will celebrate my 50th birthday who knows how! Not at the big party I wanted at the Mexican restaurant with lots of margaritas. Shoot when this is all done I'm going to Cozumel and drink margaritas for a week!!! I will close my eyes and imagine sitting on the beach, drink in hand, with my fabulous new (and hard won) tatas in a brand new bikini... It's a good plan. Wouldn't it be awesome if we could all get together one day and have a long weekend or something together

Glad you have a plan and hopefully some relief in sight, Alexa. Know your appt can't come soon enough! Hang in there

Alexa, we are all there with you in our hearts. Take care ❤💙💛💜💖💞

Wow. I had a breast reduction on November 27th and the cancer was found in the excess tissue that was sent away for pathology as a routine practice. I had had a clear mammo and ultrasound a month before. Yes we are lucky but it still sucks! Knowing that I will lose my breasts in four days is devastating.I was so happy with the results of my breast reduction. I can see why those well-meaning comments would be very hurtful to you

• Stacy13 Sorry to hear about your pain. I too hae been having spasms and burning pain. Didn't start until after my 4th fill, and my pain/spasms usuallysubside over the next 3-5 days after the fill. I'vve been getting 100ccs at each fill, but you can ask for less and that helps some. My plastic surgeon referred me to PT at my last visit and that has been wonderful. First PT session focused on some exercises I can do at home to increase range of motion and strength. Next session worked on stretching and massage to release some contracted muscles and tendons and a lot of deep massage to break up scar tissue. Although the massage was a bit uncomfortable at times, I found that just after it starting getting uncomfortable in one area she would reach the point where "something" would be released. I wish I could have stayed there all day as my body felt better than ever when she was done with our session. She confirmed that I do have cording in the axilla and part of the arm on the BC side and worked on that as well. And, although I don't have lymphedema, she did lymphatic massage to drain my lymph nodes as a preventative measure. Very relaxing and something I can do at home. You may want to ask your physician about PT if you think it may help you too.
  • Melanie-C, timing on this really stinks! I know there is never a good time to learn you have BC but learning soon after your breast reduction is even more difficult. I wasn't as concerned about losing my breasts since plastic surgery can do some amazing things with reconstruction, but I hated the idea of losing my nipples. Didn't like the loss of sensation there and really didn't like the reconstruction photos with large scars (I called them shisk-a-boobs) as it looked like the reconstructed or tattooed nipple had been skewered. Spoke to my surgeons about my concerns and they did their best to work through small incisions surrounding my nipples. Still couldn't do nipple sparing MX and in the end they were correct about that as my DCIS was almost twice as large as estimated via ultrasound. I am 2 1/2 months post BMX and loss of nipples is no longer a "big thing" for me as I'm just happy to be on the other side of surgery. I'll add that at MDACC where I had my surgery they have a Body Image Therapy specialist who offered counseling for ladies concerned with loss of breasts and body image issues. It was free (hard to believe) and was very helpful in terms of how to look at yourself post surgery for the first time, how to accept the feelings of loss, etc. Very beneficial if you have access to anything like that. If you would be interested in the tips they gave me in terms of coping, send a private message and I can pass along some things that helped.

Stacie13, Hang in there, try alternating warmth and frozen peas. That helped for me. Also massage the area. I had that IRON BRA feeling where I felt like I was literally wearing an iron bra and it was difficult to move anything for a while. Also I had to revert to using compression. Meaning, I wrapped my bodice in the after surgery wrap that the PS wrapped me in right after surgery for 24 hours straight (with my doctors approval) and that reduced a lot of the swelling I had.

One thing my PS wouldn't let me do was lay down. He told me to sleep on the couch or chair in maybe a slight reclined position because he didn't want the tissue expanders moving around. He wanted them in a specific place to only expand that area. I think that did help me. I slept on the couch for 2 months before he allowed me to lay down on my bed.

I still have my expanders in and won't go to the next phase until after my radiation is finished some time after July. It's a long time to wait but I think it's worth the wait.

Check with your PS and take care.

Ladies, just checking in to say hi and thanks for the advice on PT. I am STILL having horrendous pain in my arm and back. Everyone seems to think it's coming from my neck. I can't have an MRI because there is metal in the TE. There are still days I have to take dilauded. Going to see my PS next week and will ask him about PT. Been going to chiropractor which was helping but last night was hell on earth. I picked up,a 24 hour stomach virus from my daughter and between that and the arm pain I was in pain and crying all night. I have never in my life experienced pain like this! It feels like my muscles are tearing apart. This has been going on for so long I fear i will never get better. Those of you who pray, please pray for me. This is so hard to deal with... Thanks. I hope everyone else is doing better!!!

Supposedly this is my last fill. It will bring me to 850cc. He likes to wait 6 WEEKS before exchange. I'm going to try and talk him down a little, maybe to 4? I can't bear the thought of another day like this let alone another 2 months... Ug

Thanks for the thoughts, but since I'm a uni we are trying to match my other Breast which is approximately 900-950 grams. I've been asymmetrical for many years before this surgery and want to match as closely as possible without doing surgery on the other side... So I have to just suck it up. If they are willing to give me painkillers to get me through this I can do it. If not, we will have a huge problem. 😿 I'm going much smaller than my original size - the Breast they took in November was over 1200 grams

Awest this is wonderful news!

I had my LAST fill yesterday. Im now at 850cc. We are looking to schedule my exchange surgery the end of March! ))))))))))

He ALSO gave me a script for physical therapy and as it turns out, he has had a couple of other patients in the past with issues like mine, so he knows a good PT who specializes in this sort of thing! I am very excited for an appointment and hopefully good results. Just don't know why he didn't offer it before I asked for it. DUH

I am EXTREMELY sore after this last fill but he gave me pain meds and so far I can bear it. Just can't forget the Miralax - like, ever! Lol

Alexa and Mom2threeboys - Thanks for your encouraging words. It is amazing how our journeys are all so different. Mom (in short) you have the most interesting and involved journey. Please keep us up to speed. Remember good, bad, or otherwise - we are here for it all. Even when we are through, we will carry you until the end. November Sisters until we all come out on the other side Cancer free and restored to a new normal.

Sleep has always been an issue for me but my foobs stay in place. 😉 I seem to spend most nights on the couch because it supports my back easier.

I had my last full too. I think I only went to the 300 range. Plenty fine for me. I just want to be done.

Keep the stories coming. I'm always interested and up for a discussion.

Those of us beginning this journey around the same time share a special bond!

AlexaP, I appreciate the thoughts and prayers. Love your range of emotions as I'm right there with you! Great to be scheduled so quickly though. And super news about the pain relief you are getting from PT. Let me know if you figure out how to get your PT to move in 24/7 :-)

Awest, I call my journey crazy sometimes but like you know we will come out on the other side having kicked cancer to the curb! Glad your fills are done too. Checking off those boxes feels great!

November Sisters rule :-)