Anyone had add’l surgery after mastectomy to clean up margins?

Jen2957

Hi, all!

I had my unilateral mastectomy on October 21. I will be five weeks out tomorrow, but just found out this week that the multidisciplinary team has decided it would be worth going back in to clean up one of the margins. I am perfectly fine with the cautious approach, but was just beginning to celebrate a bit that everything is healing so nicely and my incision (a single one along the mammary fold) is fading and smoothing out. I am in the middle of tissue expansion right now, and though they will deflate a bit during surgery to provide more room and so there will be less stress on the new incision as it heals, that will be a difference from the first surgery- they were unable to fill at all during the mastectomy.

My question is, for anyone who has done this before, what was recovery like after this second, less invasive surgery? My understanding is that they will go through the same incision, so I'm not sure if that makes it more or less painful or slow to heal.

Thanks so much! Have a wonderful Thanksgiving if you are in the states and celebrate that holiday. If not, have great weekend!

Jen

SuQu31

Jen,

I had a close margin near the skin of my cancer breast and chose surgery (instead of rads) to take an additional “wedge" of skin. (This is what my surgeon called it). You can see my dates in the signature line- it was soon after the first surgery. They removed some saline from my TE before the surgery. Compared to my first surgery (and a second surgery at midnight after the first one to check some excess bleeding), it was no big deal at all. It was an outpatient procedure and we were back home within a few hours. I do have a rather large scar from the re-excision, but that's because it was near the skin, and I don't care- I just wanted it out!

I was still recovering from my more involved lat flap procedure, but I do not recall much pain at all. It did cause some delayed healing on that side, so I increased my protein, Vitamin C and Zinc and watched it like the obsessive person I am for any signs of infection. But you should be dealing with something very different since you are far out from your initial surgery. Also, I had three different surgeries within 10 days, so it took a while to clear my “anesthesia brain"

I will add that it was after the re-excision that I first thought I might be experiencing some lymphedema, so that is something to keep in mind. Just take it easy and don't push yourself too hard during the additional healing time.

Jen2957

SuQu- Thanks so much for your reply! Wow! You went through it for those first couple of weeks, didn’t you? It sounds like an exhausting, foggy-brained whirlwind! I am so happy it all ended well.

It sounds like, other than the timeline, our situations are similar. I don’t think I get the option of no rads; I had a positive lymph node and several margins that were closer than they like. My tumor ended up being much larger than anticipated, but was equally mixed with IDC and DCIS. Like you, I have the “I don’t care- just get it out mentality” and that applies to rads as well or me.

My mastectomy was actually an outpatient procedure as well, though they said they would have allowed me to stay if I really wanted to or if I had any issues at all. I had a unilateral with TE, so no flap to have to recover from. I laughed at your comment that you watched it like the obsessive person you are! I literally take photos each day after I have a surgery or injury just so I can identify any changes or inflammation. One really cool thing my plastic surgery used on me is a new “plate” that is impregnated with vancomycin and another antibiotic. It is a full palm size, fairly thin disk that he places under the tissue expander where it delivers antibiotics to only the local area - he has a friend at Stanford who has been using it and the rate of local infection has dropped to zero. I was one of the first few people here that my surgeon used it on and have been pleased to have no healing or infection issues. No systemic antibiotics necessary. The plate will remain in place until the TE is removed. It is made of a cement type material, so not made for comfort, but then, neither are TEs. 😂

Did they use your initial incision or did they have to create a new one? I’m hoping it will be the same, but don’t necessarily care as long as I don’t have to have the dreaded drain again! I will definitely be vigilant about lymphedema- that had not even crossed my mind! I have had some cording after my SLNB that was possibly caused by the drain placement and where it hit on the nerve root and biopsy incision area. Good times! There is a wonderful Australian physiotherapist who has some videos on her YouTube Channel of exercises and techniques that worked very well for me. Her name is Jen McKenzie and she specializes in breast cancer recovery, therapy, etc

SuQu31

Jen, I took pictures too! My “good" side did fine but the “bad" side seemed very iffy for a while. And it was Christmas time, so I knew that calling someone about it would ruin their Christmas/holiday too, so I spent Christmas day looking down my shirt every other hour. LOL.

It turns out that I am a slower healer than some, so the added stress of removing more tissue and an additional surgery just made things even a little slower. And I had drains the entire time- did not get them out until sometime after the re-excision. With the lat flap, you have a round excision around where your nipple would be, with scars in the back. The plastic surgeon did those, so they are fine. The re-excision was a diagonal from where my nipple would have been up to my armpit, and since the close margin was on the skin side, it all shows. It still shows but I probably did not work as hard as I should have on the scars. None of them show even in a swimsuit, so I just don't care, especially at my age!

The “plate" sounds fascinating. One of my friends had an infection after her mastectomy and was hospitalized for several days. She is one of the healthiest, cleanest people I know (LOL), so that made me realize in a personal way how easy it is for that to happen, through no fault of anyone. And I am one of those people who will get an infection and not be able to shake it, so I was super cautious. I had a separate bathroom set up just for me and was pretty ridiculous about the anti-bacterial soap and hand sanitizer. My poor husband just realized that I need to worry about something and was very patient about the whole thing. It was actually his idea to go ahead and have the re-excision right away while I was still recovering from the lat flap. I don't think it extended my recovery, really.

As for the drain, think of it as a minor inconvenience that is really irritating, but might keep you from having a seroma or other swelling issues. If they recommend it, I would do it. And as for the lymphedema, I think I am the “unlucky" lucky person in several ways. Just DCIS, but surgery complications, close margin, hormone negative and still being screened for recurrence, even after mastectomy (although that makes me happy). Just 3 lymph nodes out, but lymphedema. But mine is not awful, and has not progressed. I wear a sleeve almost all the time, but I'm not sure it is absolutely necessary- you get used to it, like everything else.

Please keep me posted on how it goes.

Jen2957

SuQu- Just wanted to pop in and see how you are doing! I think we are definitely from the same tribe- it has been fun to read your posts band see my own behavior patterns there! 😂

Surgery and recovery were really easy - especially compared to the mastectomy. I have a scar that definitely shows, but like you said about yours- it won’t show in a swimsuit, so who cares? Mine is almost parallel, with a little downward slope, from my nipple to the outer edge of my breast. They had to take out 150cc of the 330cc fill they had in the TE; that made the little dog-ears on either end of the incision more prominent at first. I just got back up to 330 this week and the healing and filling have really helped minimize their appearance. No drain this time! Woo-hoo! The healing has gone so well so far, that I have to think the antibiotic plate has surely helped stave off any issues I may have h been prone to having, but no way to really know for sure.

You may appreciate this- I went to WalMart to print some pics from my phone and had to go through and make sure I didn’t have any boob pics that may inadvertently pop up on the screen! 😝 It is fascinating to see the progression, but I have to be sure I move those shots to a separate album immediately.

I’ll have to get your perspective on the whole fat grafting process when I get closer to having that done. I need to do the radiation series next, but then will be ready to go with that.

Hope you’re doing well!

SuQu31

Jen,

So good to hear from you and I’m glad your surgery went well. And so funny about Wal-mart! Definitely not pictures you want anyone else to see! Yes, the re-excision was much easier than the mastectomy, and I think you will find your exchange surgery to be even easier- mine was, anyway. I mentally prepared myself for the worst case scenario and it really was not a big deal at all.

I hope your radiation goes as well as this second surgery did! Happy to answer any questions I can when you get to that part. Have you decided if you are going to have nipple reconstruction?

Jen2957

SuQu-
I knew you would fully understand the real risk involved in pulling up those photos! It is so good to hear that the exchange isn’t any worse than the other surgeries and may even be easier. I think we all deserve a little “ease” after all the poking, prodding, slicing, and dicing we go through!

I won’t need nipple reconstruction bc they were able to do a skin AND nipple sparing mastectomy. They test the nipple core and also made sure they got huge margins for it, so they were able to leave it in tact. It certainly doesn’t match the other side, but it looks pretty normal inn isolation. The weirdest thing was that the areola essentially disappeared after surgery, but the nipple was in tact, so I couldn’t quite figure out why things looked so odd. Then, a couple of weeks after surgery, it just slowly begins to reappear! This whole process is just so strange! Lol

I will be having ovary removal so I can bow out of the monthly Lupron shots. I only have on left, bc I had an ovarian cyst that caused torsion and required emergency removal back in 2013. The remaining ovary is a trooper, though, and has picked up all the slack- I just turned 51 and still no menopause. I had my first Lupron shot to suppress ovary function on 12/9 and will continue to get them until my laparoscopic ovary removal is completed. My grandmother died from ovarian cancer, so even though I don’t have the genetic mutation, it still further reduces any risk I may have by 35%. No hysterectomy needed, just the ovary and tube. I just felt like scheduling the next 59 months of my life around a shot that I have to drive 40 minutes each way to get sounded like it would get tricky and frustrating.

BTW, I had a friend just get diagnosed in the past couple of weeks with DCIS, Stage 0, hormone receptor negative, Grade 3 with comedonecrosis. They are recommending lumpectomy with rads, but she has the option of mastectomy. She is completely new at this, but is concerned about the high grade and comedonecrosis. It sounds like you guys are very similar in diagnosis. Were you given the choice of lumpectomy or MX? If so, I was just wondering what swayed your decision or if you had any suggestions for what she could read to help her decide. I had 50% DCIS, but mine is completely mixed in with IDC, so I don’t feel like I can give her a lot of help in the DCIS realm.

SuQu31

Jen,

I'm so glad you were able to keep your nipple and wow, that does seem strange that the areola would disappear and come back. Also strange: the things we do and talk about after breast cancer! After I posted the message, I worried that you would think I was being super nosy, but these are the things we discuss!

After the mastectomy, everything seems much easier. There's so much emotion involved in that surgery, too- trying to remove cancer but also removing a part of yourself. The exchange will be emotional in a good way- putting yourself back together! But a much, much easier surgery.

I agree on the ovary removal. I am in favor of removing any and all body parts that might try to kill me if I don't need them. And yes, the time spent having the shots when you don't need that ovary anymore makes the surgery seem like a no-brainer.

As for your friend, I highly recommend reading on this site and these discussion boards about mastectomy v lumpectomy for DCIS. My surgeon recommended mastectomy and I chose to have the healthy breast removed as well. Her reasoning was that, with ER-/PR-, there just aren't as many tools in the toolbox of treatment should there be a recurrence or a new cancer. I understand as well that generally, radiation only can be performed to a particular area one time, although I am not sure that is always true. Also, my MRI showed some potential that there had been spread to the lymph nodes (which ended up being reaction to my horrible hematoma from the biopsy). I don't know if that made a difference or not, but there was some indication of invasive cancer. There is always a chance that the final pathology will show an invasive component, which is something I'm sure I was told, but didn't really register with me until after my surgery. I was concentrating on getting the cancer out, and there was so much to learn in those early days.

The surgeon I saw for a second opinion initially recommended lumpectomy, but after he reviewed the MRI, he also recommended mastectomy. I think there are so many factors that go into the decision. Size of the DCIS, grade of the DCIS, location in the breast, health and age of the person are just a few of them. I think getting a second opinion is a good idea, even if the recommendation is the same. It gives some comfort, because honestly, everyone is doing the best they can to make good choices, but so much of this is beyond anyone's control. I hated that the most! I joked that I would have performed my own surgery had I been qualified!

Even after the re-excision, there still is some concern of recurrence for me, so I am having annual mammograms, even after mastectomy, which I understand to be somewhat unusual. My surgeon saw something in July that caused her to order a followup in November, which was stable. The hope is to catch any recurrence at the DCIS stage, before it becomes invasive.

I don't know if this has been helpful, but I do recommend that your friend read these boards. I did not start reading until after my surgery, because I did not know how much I could trust the information, and I did not want to scare myself. But the women on these boards are smart and knowledgeable, and they care about sharing their knowledge in a way that only someone who has been there, done that, can. Beesie is a very smart, knowledgeable poster here who has put a lot of time and effort into the issue of mastectomy versus lumpectomy, all backed up with science. I will find some of the topics and come back and post links.

SuQu31

Jen,

Here are a few topics (and hopefully, working links):

"A Layperson's Guide to DCIS" https://community.breastcancer.org/forum/68/topics...

"lumpectomy v. mastectomy - why did you choose your route" https://community.breastcancer.org/forum/68/topics...