April 2018 Surgery Support Group

rachelcarter35

Three days out from double mastectomy with expanders on top of the muscle. They did the whole thing without putting me competently under using fentynal and nerve blocks. It's funny but my two pain complaints aren't much to do with the mastectomy. The first night in the hospital my rotator cuffs were in so much pain. Icing finally gave me some relief. The surgeon thinks it came from the sustained position they put you in during surgery. My other complaint has been stinging where my drains come out of the skin. - not red or swollen. Doctor says its normal. I'm feeling great otherwise. Yesterday I walked around the block once in the morning and once in the evening. Maybe a bit too much too soon. Taking it a little easier today. Taking prescribed meds till Monday then going to move over to tylonal. Waiting for path report.to find out the next step.

swg

Sorry, I was off the forum for a while, but I just got my implant exchange surgery done yesterday. OMG WHAT A DIFFERENCE NOT HAVING THAT STUPID TISSUE EXPANDER IN ANYMORE!!!

It feels so much better.

It's just like all the ppl here say..the implant exchange surgery is SO much easier than the mastectomy. SO MUCH EASIER.

I'm only on prescription strength ibuprofen. They gave me Vicodin but I'm scared of that stuff. Not taking it.

I know they say you can't shower for 78 hours, but after my mastectomy, my surgeon said I could shower right away..just avoid the dressings. What do you guys think? I'm stinky!

I can't wait to get the bandage off and see what my new breast looks like!

2catsintheyard

Hello All,

Went off the grid for a couple of weeks while healing from BMX direct to implant. Had chemo pre surgery so that is over and done with thank God. Since surgery healing is going well, still sore but am no longer a turtle on my back with TRex arms though still limited to over/under reaching and 3-4 lbs weight.

Met this past week with BS, PS & RO (last one being radiation oncologist). Good news is: both surgeons happy with outcome & prognosis is for cure by all 3 Drs. Bad news is: they found two positive axillary nodes so took 10 in right side as a precaution, and I did not escape the radiation net as I had hoped but only have 28 “zaps” starting 6/16.

All 3 drains out thankfully, antibiotics done, colace, done, down to occasional Tylenol or 1 Percocet at night to pass out and get a good nights sleep in my 1.5 size electric recliner. Boy, was that a good decision! I have had an amazing outpouring of help, food, flowers and presents from my “village”. It has been wonderful, exhausting, exasperating, frustrating, an unbelievable blessing and yet somewhat of a curse for a self proclaimed one who likes to steer the ship to be in a position of literally being forced to accept help for sometimes the smallest tasks. That being said and done over the past two weeks am also happy to be gaining more mobility & less fatigue day by day.

I have a few different circumstances I am wondering if anyone else has had and can comment on:

1. I had a half dose of Botox (paid out of pocket & not cheap!) at suggestion of PS for best positioning and pain management. It kicks in a week or so after surgery pain killers wear off and lasts for about 5-6 weeks post surgery. I have had lower pain on the pain scale and rarely take anything in the day, only to sleep & part of that is because I have Never been a back sleeper.

2. I did not wake up with, nor do I yet wear a bra. I have been in 2 alternate binders that look like smocked tube tops from the 70’s. Will wear those through this week until 3 weeks post surgery per PS.

3. Lastly, was also prescribed hyperbaric oxygen treatments (google it) to speed healing. Mostly because they had to take R nipple due to abnormal cells found (again, a reasonable precaution & areola saved on both). I have had (8) 2 hour sessions and scheduled for 5 more. Am starting to have ear/fluid issues and eye pressure issues that concern me tho and may pull the plug on it after tomorrow. Time will tell.

4. Lastly-as long as we get Super personal on this forum...since the numbing meds after surgery wore off, every time I get cold (when nipples would normally pucker) wowie 😲 wow is it painful!! I feel sorry for my husband as it is really warming up here in Phoenix and I can’t stand the A/C

Has anyone else experienced any of the above?

PaulaAtlantaGA

One thing I've learned on this journey is that we are surely all different! Had my DMX with Axillary Node Dissection late Friday. Spent one night in the hospital. At this time, the pain is in my nodes and drains, not my (smaller) breasts. But they used Exparel which is supposedly wearing off slowly. Honestly little pain in breasts; killer pain in nodes/drains. Taking the prescribed Percocet with laxatives. Muscle relaxant as well. Anybody past Exparel wearing off?

Thanks,

Paula

MAC58

Hey all,

Went to doctor today for post 2nd surgery lumpectomy check up, my incision started leaking this morning after my shower. So, get to doctor and they had to drain and pack the incision. Now it needs re packed every single day..nurse coming tomorrow to change the packing, my husband is going to try and learn how to do it, but he has a bad hand with little mobility, so we will see. Anyone else have an incision that required packing? How soon did that heal for you? Thank yo

Veeder14

Hi MAC58,

I'm sorry to hear that you have an infection that has to be packed (healed from the inside out). I had an infection like that after lymph nodes were removed in my upper leg. The incision had to excised and skin cut away first, then drained, then packed and unpacked every day. I guess it depends on how big the area is how long it takes to heal. My incision was packed for 3 weeks but healed up fine although it was a lot of work. The surgeon gave me pads to tape over the incision after packing to catch the liquid draining out. I had to change those frequently throughout the day.

Luckily my husband did the unpacking/packng for me as I was squeamish about doing it even though I could reach the area. It would be hard to do your own breast so hope your husband can help you. Good luck and I'm sure it will heal up just fine.

Warrior2018

Oh Mac! I'm sorry to hear that. That happened to my C section incision years ago and man was it painful. Make sure to take pain meds before the nurse comes- that's my advice. Hugs to you for a speedy recovery.

My surgery on the 25th went great so they say. Lumpectomy on the left with lift and reduction on both. I now have the boobs that I had 20 years ago. Very strange outcome to all this. I'm sure I'll end up with a double mastectomy before this is all said and done but this was the best way to find out about tumor now and save most of “me". Healing has been ok. I have pretty good arm movement but of course, as you ladies know, the stupid lymph node incision is the worst! It's like an inch long but more irritating and painful then both boobs.

I see my PS today. I can't wait for these itchy steri strips to come off!!! Wishing quick healing to everyone!!

Edited because I’m always typing from my phone

PaulaAtlantaGA

I just got early pathology info from my BS following my DMX w axillary node dissection on Friday, April 27. Because I am still in pain from the surgery, I am struggling to be positive. I will get there, but I confess to being a bit down today.

Five months of chemo shrank my 5.8 tumor to 2.0, and she had clear margins getting it out. 2/14 nodes were still malignant. I knew I was headed for radiation, but I'd hoped to avoid Xeloda and a likely trial with Keytruda. I'd hoped to be "Done!" after radiation. I know I need to think more positively and get on with the business of living life; it's just hard when you're less than a week out of surgery and still in pain, particularly left arm axillary node pain. Down to two drains from four. Trying to figure out what to wear to a wedding of dear friends this Saturday. At 64, the chemo and the surgery were hard on me, but I can do this.

I see my MO on 5/9, and that's when I'll ask a boatload of questions.

star2017

Paula, I'm sorry that you didn't get better news, but it looks like there is some good news. My mother is on Xeloda pretty much forever now (for a different cancer), and so far hasn't found it to be too terrible. I hope each day is better. I can totally imagine how frustrating it is to find something to wear with those drains in! Something loose and flowy and cool. If it's not too late, maybe you kind get something new. If I were you I'd be trying to find something through 2-day Amazon shipping!

Mac, so sorry about the incision leak. That sounds miserable. I'm glad your husband is there with you and helpful!

I'm two weeks out from surgery (prophylactic MX with TE placement on left and TE to implant on right). Pain isn't terrible, but my left arm is still a bit restricted and tight. I'm still sleeping in a chair, but I don't mind it. I just want this darn drain out! Hopefully it can come out when I go to my PS tomorrow. Just heard my PS is leaving the hospital in a couple months. I'm disappointed to hear that, as I trust him and hoped he would continue my care. Not sure what's next, but I'll speak to him.

MAC58

Thank you Veeder , Star and Warrior, this is just so discouraging ..going out of town in 9 days for our sons law school graduation so hope I feel more under control by then. Visiting nurse came today for the first time and said usually takes 4-6 weeks to heal, hope I'm a quick healer

RiRi11

MAC sending you healing vibes ((hugs))

PaulaAtlantaGA

Thanks, Star, for your helpful comments. I love getting to know some of you through this board and this path none of us would choose.

I find that when I'm in pain (still have 2 drains and the pain from the axillary node dissection is still strong) my world outlook is poorer. I'm following my friend (an MD)'s advise to take care of the pain, even if it means still taking 3 Percocet nearly a week after DMX and dissection. The TEs aren't giving me the deep, sharp pain of the dissection, but they're not comfortable yet. I'm almost 64, and I think a little longer healing may be my experience.

Unfortunately, I have to start radiation sometime soon - meet with my doc on 5/9 about pathology and will talk about radiation scheduling. I'm concerned that my PS may want larger fills pre-radiation, but I'm not unhappy with these cute little TE foobs he filled to 220 under anesthesia. When you've had DDDs for decades, being small looks good

star2017

Had a post op appointment today. The drain on the mx side is out! Woo! One more step toward feeling normal. I also think that the implant side looks pretty good/real/natural, so I'm feeling better and looking forward to things getting better with each step.

Still sad my PS is leaving, but I'll talk to him next week about the game plan for next steps and also find out if he'll still be practicing nearby.

Hope everyone is doing well.

SLL101984

Those of you while had reconstruction, is your implant above of below the muscle? Hoping I will be able to have prepectroal since that seems to be a much better/easier recovery. Just curious how often that way is used. Glad to see everyone is doing well in recovery!

star2017

SLL, mine is prepecoral.

ShimmerGal

SLL -- this thread on pre-pec recon might be helpful: https://community.breastcancer.org/forum/44/topics/835911?page=1

SLL101984

thank you ladies

CoComedy

Hi ladies. Thought I would check in and see how everyone is healing from surgery.

I had my bilateral mastectomy on April 4th. I’m happy to say that things are healing really well! Certainly no pain. Just a little discomfort when I try to sleep on my side or belly (which I miss!!!). It’s hard to believe I even had surgery some of the time. I’m getting used to the TE’s and enjoying the cleavage I had long forgotten about. Haha.

I have no clue when I will get my permanent fake boobies. So far, I haven’t had another fill since my initial surgery. I kinda like my small B cups I have now.

Hope everyone is doing well!

HUGS!!

Warrior2018

Hi all. I’m heading to my follow up appt with my surgeon, not the PS but the “cancer” surgeon. I’m in a bad mood this morning. I’m getting so tired of all of the follow up appts, the uncomfortable arm I have from the sentinel node removal, and my overall sedentary lifestyle since I can’t workout for another 2 1/2 weeks. I feel like yelling at my surgeon and saying WHY DID YOU TAKE OUT SO MANY NODES! All of my tests on my nodes beforehand looked clear. I had two ultrasounds and an MRI with dye. Why did i let her convince me to have the procedure?!?!?!? Did anyone say no to the sentinel node removal?!?!

(Sorry for the vent....you ladies are the only ones that can really understand.)

PaulaAtlantaGA

Hi, ladies,

At Day 11, post-DMX and axillary node dissection, I am finally feeling better! I used the prescribed Percocet for just one week which, considering the three places of my surgery, I was glad about. My axillary node dissection site feels - and has felt - the worst throughout, although I do feel those subcutaneous TEs. Having been a DDD most of my adult life, it feels like I forgot to take off my underwire bra, the only kind I wore. I wasn't sure whether or not to go flat, and I would not have chosen TEs that required pectoral muscles to be cut. The jury is still out on these, but I think they're going to work.

Because I still had a 2 cm tumor (down from 5.2) and cancer remaining in two of the 14 nodes she took (after neoadjavant chemo), I have radiation and Xeloda in my future. I get my first fill (after the 220 ccs during surgery) on my 64th birthday, May 15. I'm not sure how many fills I can have as I think radiation may be soon.

I've only learned what I'd consider the outline of my pathology from my breast surgeon. I meet with my MO tomorrow to learn more details. I wish the news from my pathology had been better, but like the rest of you, I'm off to fight this, and to fight for the time in my life when cancer no longer seems to "define" me. Best to all of us!

Paula

Warrior2018

Wishing you a speedy recovery Paula and good luck on your appt tomorrow. Let us know how it goes.

star2017

Warrior, I'm sorry that you're having a difficult recovery.I am really glad that those lymph nodes are clean though. That is great news! I hope the coming days are better for you.

Best wishes, Paula. I hope things improve each day.

I had another post-op appointment today. I'll be three weeks post prophylactic nippple-sparing mastectomy on left and exchange on right. The exchange side has been great, barely felt a thing.

On the mastectomy side, I got my drain out last week. As my bruising went down I suddenly noticed the side was starting to look like a normal breast (just a small one). I was wondering if the PS had actually filled the tissue expander on that side a little (though he hadn't said anything and had avoided an implant bc of blood flow concerns, so it didn't make sense that he would add fluid).

Anyway, turns out the fluid that would have gone into the drain is gathering there. My PS did not seem concerned. Said my body would reabsorb it and did not want to risk infection by draining it right before I'm starting the radiation process. I'm a little concerned, though reassured that my very cautious PS is not. Has anything like this happened to anyone else?

Warrior2018

Thank you star

virginiab

breastcancer.org was SO useful to me when I had breast cancer in 2012. What I have now is a cancer in my breast, but it is not breast cancer but is angiosarcoma, caused by the radiation treatment I had on my breast back in 2012. Because it is a rare cancer, I searched out experts who see more of this than my local hospital does. I have been going to The James Cancer Center at Ohio State University, which is about 6 hours away from my home in central Illinois. Luckily, I have been able to do the pre-surgical chemo with my previous oncologist here in Illinois. I did 4 months of weekly Taxol, then took some time off to recovery. I jad surgery in Ohio on April 26, a single mastectomy without reconstruction. I am seeing a local surgeon in two days and I hope she will agree that it is time to pull out the drain.

I hope it is all right if I hang out with you as we all recover from April surgeries.

Engine104

Dear Virginab,

Welcome aboard.

My wife is recovering from a mastectomy that was performed on 4/17. She had her first infusion of TC last Thursday. The day 3-6 time span after a TC treatment that people talk about on here is everything they wrote. Just very tired, very achy.

I am so sorry to hear about your angiosarcoma. My wife has a similar story. She was treated with a lumpectomy and radiation for DCIS 22 years ago. Back in those days, they gave 10 weeks of radiation. This probably caused my wife to get AML 16 years ago. We both really thought we were done with this cancer thing and then came my wife's "routine" mammogram in March..

My wife doesn't like to be on the computer much and doesn't do social media much either, so I hope it is ok that I've been posting on here. I need this site not only for information, but for knowing there are people out there going through the same thing as my wife.

I wish you all the best for a complete healing.

rachelcarter35

Hello you warriors.

Good news/bad news:

Good news: clear lymph nodes and margins whoohoo! so no radiation.

Bad news: Necrosis in two small areas along right breast incision. PS says its a 50/50 chance it will resolve or they'll have to go back in.

I'm applying nitro glycerin paste 2% 8 hours per day to bring blood circulation to the area. It causes a serious headache.

My implants are prepectoral and are irritating but not painful. Drains are irritating too and will hopefully be out next Monday if they continue to dwindle at the rate they are now.

Waiting for Oncotype number hopefully available by 5/16 when I have my appointment with Oncologist. Praying for below 25 then no chemo.

Estrogen positive so will I get through all this with just new foobs and Tamoxifen? A girl can hope.

I'm thinking about all of you and sending my love. We are earning some serious good time chits right. When this is all done we are sure going to embrace this beautiful life and enjoy every healthy, pain free, energetic, fearless moment God gives us.

I'm picturing me in my garden; whole and healed and wiser. Love Love Love to you at what ever stage you are fighting in this battel.

virginiab

Engine 104,

I don't know what AML stands for, but I'm pretty sure it is nothing your wife would have ordered as a boirthday gift for herself!

It does help to connect with others.

After I recover from the mastectomy, my next phase is 2 more months of weekly taxol. Fortunately, that chemo is pretty easy for me to tolerate, though I worry about creeping numbness in fingers and feet. After chemo ends, we begin a few years of surveillance. My MO thinks we can cure this angiosarcoma. I like that thought.

Virginia

Engine104

Hi Virginab,

AML= Acute Myeloid Leukemia. She treated at City of Hope and after six months in the hospital and several extreme rounds of chemo, she was given an autologous stem cell transplant (Using her own clean cells). That worked and she is cured of that. Having to do chemo again, which carries the risk of leukemia, scares us, but what can you do? Her Onco Doc said her risk of that is no more than anyone else's...

The doctors feel there was a direct line between her radiation for DCIS and the AML years later. However, back in those days (22 years ago) they used to do radiation for a much longer period of time than today. Also, how they administer it is much better now as well.

Anyway, this new, unrelated, bout with BC has us back at the circus for a third time in our 34 years of marriage. "For better or for worse", right?

joy2

Hello rachelcarter35 ! So happy to hear that your lymph nodes are clear. you I am 2 weeks post op BMX nipple sparing and i have the same problem, i had a second surgery to remove that dead skin, and now I have that problem again. I was yesterday to my PS follow up appointment and he told that i have 50/50 chances to survive. I have another appointment on Friday to remove my drains and I hope that I will not go again in surgery. Is that nitro glycerin paste 2% doing it better and if yes where did you get it? I wish you good luck and feel better soon.

Warrior2018

So many ups and downs with BC. I hope everyone is on the mend and feeling better soon. Gentle hugs to all.

I met with the PS today for my 2 week follow up and stitches out. That was an uncomfortable process. But they're out and hopefully the healing process continues to go as well as it has been. Good thing I brought a pillow with me to hug on the ride home. Bumps can be pretty unpleasant.