Mastectomy bulges under arms

Drains and pain were horrifying

Mariangel43,

I'm sorry this happened to you. One thing I've learned since starting my non-profit website, BreastFree.org, and hearing from thousands of women: It's extremely important to be very clear with your surgeon about what you want to achieve. For those of us who choose not to have reconstruction, that means a smooth chest with no extra skin and (if a bilateral mastectomy) symmetrical incisions. And also request that the surgeon try not to leave dog ears (lumps at the end of incisions). Breast surgeons are sometimes not as expert as plastic surgeons at achieving excellent cosmetic results. If you're left with dog ears, a plastic surgeon can usually correct this with a procedure that's a minor, outpatient surgery.

In your case Mariangel, I would consult another plastic surgeon to see if you can get the reconstruction result you desire.

Likea, I am sorry that you are having that experience! I would gently and respectfully disagree. I do NOT believe that is what my surgeons were doing. I believe that they were doing the best they could. My adhesion came from their efforts to leave me with fewer scars (hence using the same spot for my drain tube after each of my 5 surgeries). I trusted and still trust my surgeons. My BS actually came in on the only day he had scheduled off right before Christmas, his scheduler tried to stop him, but he was determined. He came in early and was with me during my nuclear med plotting of my sentinel node, when he didn't have to be. That was not because I was paying him, that was over and above what was expected of a BS.

And my PS worked to make sure that I wasn't going to get any additional bills, as my final surgery was at the end of the year. I had 2 years where I paid my max out of pocket to insurance (first surgery in Dec 2002 and last in Dec 2003). He included all the cost related to follow up appointments so I wouldn't get billed for anything from his office in the third calendar year - even though I had follow up appointments then.

I'm sure there are surgeons, like every other profession, that are 'in it for the money', but that has not been my experience and I want to be clear that not all surgeons should be lumped together in your negative assessment of them.

Erica, my surgeon left small tufts of skin at the end of each scar near my sternum. Nothing awful, but weird-looking. He told me it was in case I wanted to reconstruct down the road, and that those tufts would help the PS "anchor" the recon. But he also told me that they should smooth out eventually and that if they didn't he would happily fix them. He turned out to be right, they did become smooth after about 6 months.

I had a double mastectomy and immediate reconstruction..I too have small bulges. They said they could take care of them at the final surgery coming up for an extra cost... Apparently insurance doesn't cover that it's not my boob... I was like whatever I know others include this in the final revision. I guess the final outcome isn't important to my surgeon. So I will live with them. I am not spending another dime on CANCER! My deductible twice is enough!🙄

Have you gone mastectomy partially or completely.

Snickers, glad to hear that Medicare and your supplemental paid for your surgeries and treatments. I am BRCA1 positive, had ovarian cancer in 1996 and was diagnosed with DCIS left breast. Chose to have a bilateral mastectomy 3/26/2018 and haven't been sure whether insurance would cover the right breast removal. I too have Medicare and United health care supplemental (best I could get). Dealing with seroma and some healing issues right now - at 73 this isn't a lot of fun.

Snickersmom:

Everything went great with the insurances, worried about nothing, other than cancer. lol Saw my lady doctor about the "down in the dumps feelings" she said she would've been surprised if I didn't have those feelings since I went through a "loss" and amputation. Prescribed a mild anti-depressant and it seems to be working great. Am dealing with the smoke from forest fires now.

We are safe but have fires burning in British Columbia and Eastern Washington, if the wind blows one way we get Canadian smoke if it blows another it comes across the mountains from Eastern Washington, am certainly praying for all those affected, either directly or indirectly.

Thankful for your time, is nice to know there are others approximately the same age ( not that all feedback isn't welcome) it's just nice to know that that you can glean information from sources that have unfortunately experienced the same treatment, side effects etc.

snickersmom it is one thing that I learned is that the grieving process can be delayed but not denied. I !earned this not through my cancer, my mom's and her death nor my sister and her cancer and death, but my son's death. He died 12 years ago at 14 from a traffic accident. This cancer club is not something we all wanted to be in but found we were in like it or not. It is the same for anyone who has had a child die. Do the grieving work for as long as it takes. Acceptance does not mean we have to like it, but we all have to accept it. That means thinking about recurrence and what our new normal is. I can tell you that I will never like my son not in my life or cancer to be part of my new normal. Sending healing hugs and light to you and all. 💓

They should cover the prophylactic removal of the other breast. I had this done, but like most others here, I’m dealing with the bulges and am really frustrated that it isn’t considered as part of removing the dog ears. I just had that done and looked here because I still felt the bulge (my bandages aren’t even off yet). This is extremely frustrating and I agree that we have to really idiot proof our discussions with the surgeons and confirm that we’re on the same page. I’m considering switching surgeons as I feel this was somewhat deceptive.

Polly - none of us wants to be here but here we are, all sharing this awful disease and trying to find our new normal. You will be tired for a while, and you need to just listen to your body. When it tells you to take a rest, you need to do it, even if you don't want to. It has been 18 months since my BMX and I still want to nap every afternoon for a while. Sometimes I do, unless I am busy or out of the house. I do seem to be at a standstill with grieving. I have been so busy and we have had nonstop company so I just haven't had time to even think about me!! Maybe that's a good thing.

Anyway, hang in there. We are all here for you whenever you need us so keep posting.

Ann

I really had no pain at all but I think it depends on the person. I went home the next morning and I was stiff but that was it. I was able to start my lymphodema exercises after a week and when I had my pre-op, my surgeon sent me to their lymphodema specialist in case I needed her. But I didn't have any problems so just did the exercises at home and that was enough to loosen up the cordon under my arms. That was really the most uncomfortable thing and even now I can sometimes feel my arms tightening up where the cording is. So I just raise my arms up over my head and then sway back and forth from side to side, and that seems to be enough to loosen it up.

Did your surgeon take the stupid dog flap? I never even knew what that was but my surgeon apparently told my husband about them and removed them. He said he always does. So I don't have any bulges under my arms. The only sensitivity I have is under my right arm when I shave. Thankfully, there's very little hair now (yippee!) so it's not much of a problem.

It will get better, but if you are really miserable, talk to your surgeon. Maybe he/she can do something for you so that you feel better. Just remember - give yourself time, both physically and emotionally. It's a hard road but we are tougher than we think.

We are always here for you.

Hugs,

Ann

Snickersmom and Aussie-Cat,

I do have the flap under my arm and the sensitivity is very slowly getting better. The physical therapist suggested putting a sock in my bra to apply pressure but haven't tried it yet. Although my surgeon said it's hard to know how much to take out, the physical therapist thought maybe he left enough tissue so I could have reconstruction later. I've been very clear that I was not interested in any more surgeries. That's why I opted for the MX in the first place.

My BS told me right after surgery that I would have some pain but those areas would be less numb after I recovered. It's proving to be true, there's only a small area around the incision that's numb, and it's somewhat disconcerting. I'm actively working on coming to terms with the final result of my choice. It could be so much worse.

I ended up being off work six weeks instead of four, and went back to work half days on Monday. Apparently I'm still recovering because my chest was very sore by the end of the day Tuesday. I'm somewhat resigned to this taking as long as it takes but hoping to still have a job when I'm through recovering from the surgery.

I'm trying to focus on what I can do. What I do have. What each day does hold, although it's still a bit of a roller coaster of emotions, especially when I go somewhere I haven't been since the surgery.

Polly and Aussie - I didn't have big bulges under my arms because my BS took off the dog flaps. I don't even remember the conversation about that, but apparently he did tell us before my surgery that he always removes them. I was clear about not wanting recon but because your arms are not straight down at your sides during surgery, they have to leave a little looseness so that the incisions don't pull. I had a BMX, so I have two incisions from under my armpits to breastbone. He did leave about 1-1/2 inches between incisions at my breastbone. Under each armpit I do have a small bump at the beginning of the incision. I did have scar revision surgery in February of this year to smooth out a few lumps but mainly to get rid of a pocket of lymph fluid that developed after my BMX. Now I am much more comfortable, especially if I want to wear a bra,which isn't very often!!

Emotionally, this is a very scary roller-coaster ride. I thought once I got rid of the girls, I would bounce back and continue my life as before. Ha!! That just doesn't happen. I actually did recover very quickly and was doing just about everything and then 7 months after my BMX, I had a major meltdown and stayed in bed the entire day crying, which is very unlike me. That's when my oncologist told me I needed help. So I have been going for therapy since then. I know it has helped (along with the Zoloft) but I think I am still stuck in the grieving process. This cancer thing really sucks.

Hang in there, Polly. We are here and it's going to get easier.

Ann

Aussie, I feel so bad for your twin sister and I hope you two are able to spend quality time together. That can't be easy for either of you. I did have cancer - a very small tumor but nonetheless, a malignant tumor. I do still have residual nerve pain now and then but I have been taking Gabapentin for nerve damage in my back and leg, so I think that might help with the nerve pain in my chest. It has gotten less and less the farther away from surgery I get. Since you just had your BMX in June of this year, you should see a difference and a lessening of nerve issues, I would think, as more time passes. As for the little lumps on my chest, I probably wouldn't have had scar revision surgery had it not been for the fluid lump under my arm. It was right where any armhole hit me, no matter what I wore. Now I feel much better.

Give yourself time. You are dealing with a lot right now and you shouldn't feel frustrated because you haven't been able to move on. I'm not sure any of us truly do move on, we just accept it and try to move forward. I'm still looking for my new normal and somedays, I think I have found it. Other days, I wake up thinking wow, what a horrible nightmare I'm stuck in. Stick with your therapy and ask for something if you need it. I've been on Zoloft since my diagnosis. And I actually had a "friend" say "gee, you're still taking that stuff?" when I was about 6 months out. I wish I had known a smartass comeback but I think I was too stunned to say anything. Now I would definitely have something to say. And it wouldn't be very nice.

I spent 6 lovely wonderful weeks in Australia 4 years ago and I loved every single minute of it. I was visiting a dear friend who lived in a Sydney suburb. She took me to Uluru and the Outback for a week, Cairns to snorkel on the GBR, and on a cruise from Sydney to Tassie for a week, with the rest of the spent in Sydney. I would love to come back and see more!

Hang in there and keep talking. It's good therapy, even long-distance like this.