Worrying about surgery, partial mastectomies on both sides and

@msandbreastcancerwarrior

I think your message answered your own question that pain and recovery varies greatly from body to body. Not all bodies react the same to trauma. Have you had other surgeries? How did your body react? Do pain meds work for you? Your own history may be your best predictor.

I do have a whole body neuropathy that can make pain signals forget to shut off, but for some reason abdominal surgery, even laparoscopic leaves me in absolutely unbearable pain for weeks. I can't even move. That was my c-section experience, yet a colleague had a c-section and the day after she brought her baby to the office and was swinging her hips back and forth to rock it. It hurt me just to watch her. Then she told me she wasn't on any pain meds and had zero pain. Lucky her! Some bodies just don't feel pain.

I had a double mastectomy and I had my ovaries and tubes out laparoscopically (two 1" incisions) at the same time (don't recommend that double surgery). My abdominal pain was unbearable for 2.5 weeks (surgeon said it should have been only 1-2 days of moderate pain), yet the mastectomy really didn't cause me pain except a little when I tried to push myself out of the recliner. I was pleasantly surprised at that. I did have an anesthesia pump in my chest for the first 3 days post-op so I don't know if I would have had pain those 3 days, but that surgery was no big deal for me as far as pain is concerned. Ask if you'll have an anesthesia pump.

My arms did freeze up worse each day until day 5 my upper arms were pretty much glued to my body and I could only move my arms from the elbow down. Physical therapy improved that fairly quickly, but it was a little freaky when it was happening and made driving challenging. I was still able to use the bathroom and eat on my own. I still can't lift my arms straight up, but I regained about 80% range of motion which is all I need for daily living. I really don't notice the loss. If I try to bring them up to point at 12:00, they are pointing at about 11:00. Lots of people don't have any range of motion issues afterwards. 10 years later my sides from my arm pits down to where the bottom of a bra would be are still very tender to the touch. But again, I have a nerve disorder so that could just be me. Still have numbness, but you'll get used to that. I did not have any reconstruction.

They did warn me to keep moving my arms to keep them from freezing, but I was in so much pain from the abdominal surgery, I couldn't move. Be sure to follow any instructions for daily stretching/movement. Wishing you the best! I hope you're one of the people that has an easy time with it all.

Wow, thank you so so much for this helpful and kind comment, I appreciate so much that you’ve taken the time and energy to share your experiences! I really feel much more confident now about going into surgery.

Thank you so much for the reassurance!

I’m like you, had abdominal hysterectomy/bilateral oopherectomy and when my pain meds ran out on day ten or was it day fourteen, I was so angry that they hadn’t given me at least one week more of meds, it was plain awful for me. I slept in a recliner for two weeks because I couldn’t lie flat without pain and it was a good two months before I felt like myself again. Even then I still had twinges here and there for a few more months after that. It was just awful to recover from.

I was really afraid this surgery would be bad like that, but my surgeons said I wouldn’t even need any pain meds except over the counter. One of my two surgeons said they will use a super lidocaine thing that will keep me totally numb for three to four days, but that I would have some “discomfort” for a few days after that time. But she said it should be very easily manageable with Tylenol alone.

I do know that I’ve had three breast biopsies now and had no pain afterwards, and I had a surgical excision, I guess a minor lumpectomy, about fifteen years ago to remove a benign something or other that kept growing. It was an area maybe a little bigger than a grape, taken out. No pain at all, never needed the pain meds they gave. I think I might have taken a Tylenol the first day, but I can’t remember. I do know I never needed the strong stuff and by a couple days later I was back to normal like nothing had ever happened.

So that experience gives me a little bit of hope.

This surgery is going to take out a lot more than that plus with the lift, there will be big incisions. And then I don’t know how things will feel with a lymph node or two being removed. My cancer masses are on the inside part of my left breast, which I guess is unusual. So I’m guessing the lymph nodes they will need to take will be on the inside part too, closest to the tumors, and not in the armpit like most people have.

On the right side, atypical ductal hyperplasia that will be removed. So no lymph node removal on that side as the biopsy didn’t show cancer. Who knows what the lab will see once all of it is removed, though. I figure there is probably a twenty percent chance I will have to go back for a second surgery, one way or another.

The surgeon already said, if we don’t get clean margins, it will be a full mastectomy for the second surgery. I will want both sides done if that’s the case.

Not sure if I want reconstruction, because I really hate pain. But I prefer the idea of looking normal when I wear my clothes.

I wonder if the super lidocaine the surgeon talked about, is an anesthesia pump? She made it sound like I would not feel a thing for at least three days, maybe four.

Gosh if they can do that, that’s pretty cool…maybe they can extend that so patients won’t feel any pain for seven days or longer, then.

But she seemed extremely confident I would not have much pain at all once the super lidocaine stuff wore off. And she does these breast lifts/reductions all the time, and apparently has never run into a patient needing pain meds yet, so maybe that is a good sign.

But my other surgeon, the oncological surgeon, talked about possibly keeping me overnight if they couldn’t get the pain well controlled.

So I felt there was a major disconnect there, and wondered which surgeon to believe.

I guess I will find out, if I am numb for three days, or else delayed at the hospital because my pain is extreme.

I will be sure to try to do whatever arm exercises they tell me to do. I don’t want that freezing up, because I bet it made everything impossible, when that happened to you.

My husband is taking a week off after my surgery to help me. He did the same thing after my hysterectomy and as bad as that surgery was, I was okay on my own after the first few days.

So I am hoping I will be okay on my own after the first six days, with this surgery.

I have my special mastectomy pillow that shields my chest and supports my arms, that I will use coming home from surgery and really I suppose for at least the first week or two, to keep that area well protected.

I already know I will be sent home with drains (ugh) and my first post op appointment is ten days post op, then a second post op with the oncological surgeon fourteen days out.

I’m getting the feeling between the treatments and everything else, I am going to have a whole bunch of medical appointments for a couple three months.

I’m hoping I won’t wake up from the surgery in pain. Other surgeries I’ve had (had endometriosis so had a couple other abdominal surgeries), if I was in pain they were great about giving me something in my IV to stop the pain.

But I don’t know, with this addiction crisis in the US, if they still do that, or if they feel it is better to just let the patients be in pain, and not risk addiction?

I guess I will find out.

I’ll write about my experiences post surgery, in the hopes I might be able to help someone else.

Thank you again for generously helping me. I appreciate it more than I can express, and I hope so much you will never have a recurrence.

I am sorry your range of motion never fully returned, and for the nerve problems, too. I have multiple sclerosis and had Transverse Myelitis that left me with permanent spinal cord damage so I understand about nerve problems.

Thank you again so much, and I want to thank the community in general for being patient with me with my questions and my anxieties.

I had a paravertebral block and didn't need pain meds until maybe 5 days after surgery. I felt absolutely fine after surgery and didn't have the nausea and vomiting that some pain meds cause for me. For a week or two at home, after the block wore off, I took 1/2 codeine and tylenol pill at 4 pm.

I did not have to sleep in a recliner but slept slightly upright with pillows.

For me the two mastectomies were no big deal. I have several health issues and docs were worried about how I would do, so they did the two surgeries separately.

Thank you so so much for this kind and helpful answer!

Oh that gives me hope I might have not such a bad recovery, maybe I can get through this and it won’t be as awful as I fear!

Thank you for giving me this reassurance. Reading stories here is a million times more helpful than the usual articles posted on-line.

It helps so much to know what it was like for real people going through this.

Thank you!!!

@msandbreastcancerwarrior
We all understand anxiety caused by anticipation and fear of the unknown. We’ve all been there. Ask as many questions as you want. Sorry to hear about your MS and transverse myelitis. If it makes you feel any better, it seems that sooo many people on the Mayo discussion boards have multiple medical issues so you’re not alone there. After reading a lot of the messages here, I didn’t feel so alone with my vast collection of medical issues. It just makes us more resilient to be frequent flyers. It’s kind of like training for the medical Olympics. We are ready to take on whatever life throws at us. I’ve found that people who have had perfect health all their life tend to fall apart with even minor ailments. If my extremely healthy mother even had a routine blood test, you would think she was going in for open heart surgery to hear her tell the story. I always got a kick out of that. Lucky her. Little kids with cancer are so resilient because it’s all they’ve ever known.

In response to your other concerns, I had 7 lymph nodes removed -- all negative. My sides were a little tender for awhile with swelling and it was a little uncomfortable for my arms to rub against my sides when walking, but that eventually went away. Again, nothing to write home about. I don’t remember if the lymph nodes were all in the arm pit or down the side. They used the blue dye to determine which ones to test.

What do you mean your cancer is on the inside and that is unusual? Do you mean buried deep in the breast as opposed to being right under the skin? Or do you mean inside as in toward your breast bone vs. your side? My tumor was at 12 o’clock and pretty deep into my breast. It was small. I hope you only have one surgery so you can get back to your life as quickly as possible.

It does sound like your lidocaine plan is the same as my anesthesia/pain pump with bupivacaine so that’s good. It was easy to remove in the office just like the drains.

I was supposed to be in the hospital just overnight, but stayed 3 days because they couldn’t control my abdominal pain from the salpingo-oophorectomy. If I had only had the mastectomies, I feel like I would have been ready to go home the same day as the surgery. Sometimes they keep you overnight anyway, just as a precaution and observation. My surgeon arranged the double surgery with my OB/GYN so I would only have only one leave of absence, one hospital stay, etc. That sounded ideal, but it was a little much to be compromised on my upper and lower body at the same time.

I decided against reconstruction due to my neuropathy and my keloid scarring disorder. They pushed me hard for reconstruction, but I made the right decision for me. No regrets. I normally just go flat, but when I get a little more dressed up to go out then I wear silicone prosthetics in a mastectomy bra so my clothes fit better and my clothes fit the same as they did before the surgery. When I get home, I can’t wait to take them off and lighten the load. I joked in a post awhile back that there are perks to going flat like no "boob bounce" when exercising and no "boob sweat." You ladies know what I'm talking about. There is always a silver lining!

Hello! The time leading up to the surgery and fear are the most difficult. They will keep you very comfortable in recovery with IV meds. I had this surgery, almost 3 years ago… my cancer was at 9:00 on left. The opportunity to have a reduction lift surgery meant that they could take large margins and a lot of tissue - including 7 nodes. My recovery was easier than I’d feared. I had an allergic reaction to oxycodone - so put on Tramadol - it worked well alternating with Tylenol! I used a large wedge pillow and slept in bed. The pillow was also a great help in a chair or sofa. By the second post op day I could take a short walk in neighborhood! Sending you best wishes!

Thank you so very much again, I am so grateful to you for helping me! I can feel my anxiety level going way down, with every word I read! Thank you! ❤️🌹

You make such an excellent point about how we frequent flyers develop a toughness and endurance. We get through things, and we know we can get through other things that come. It’s nice to have that inner strength.

I was an Army Officer before I got disabled with MS, and another Army Officer I knew and admired, said in an interview, that breast cancer and the treatments didn’t affect her much at all because she was airborne. It’s hard to explain, but it’s a thing in the Army…you get your wings and the training is tough and you keep that inner strength. I’m airborne, too. So I will get through this.

Yes, I meant my masses are very close to one another, one just closer to the chest wall, both at 9 O’clock so close to the middle of my body, rather than the outer edges, if that makes sense.

Are all the lymph nodes only in the armpit? I thought I saw in an illustration, there were some in-between the breasts sort of, and I thought, I bet that’s where my sentinel node will be, because it’s closer to the cancer. But they will find out when they inject the tracer dye. They will do that when I’m already out, which is a mercy for me.

If they don’t get clean margins, it will be mastectomies for me. And I will have to wait 4-6 weeks for that, so I am hoping for clean margins.

If they do mastectomies on me, I will opt for staying flat as well. I’m 62, and vanity isn’t important to me anymore. I will wear the prosthetics when I go out though just to avoid attention and blend in.

Thank you again so much for your help!

Thank you so much, I really appreciate your help! ❤️🌹

Both of mine are at 9 too, but one is deeper. They are apparently close enough together and both very small, 1 cm and 7 mm, that he will just take that whole area out, and that will still leave enough breast tissue for the plastic surgeon to work with. To be honest, with triple D’s it will be nice to have a reduction to C cup and lift, anyway. So there is plenty of tissue for the surgeon to work with, is what I mean to say.

I am so relieved to hear your recovery wasn’t as painful as you feared! My plastics surgeon said I’d be numb for 3-4 days and then she expected my pain to be easily managed with just plain Tylenol after that. I hope she is right.

I’m a stomach sleeper so I will sleep in a recliner just to be safe, at least until the drains are taken out.

Did you have drains, as well?

Thank you for letting me know they are good about keeping people comfortable, still, so they won’t leave me in pain.

Thank you so very much for this kind and helpful reply!

I had reconstructive surgery on both my girls. Went home after surgery worn the surgical bra for about 1 or so. The hospital gave me ice packs and of course pain medicine. Had a drains that needed to flushed out. In all honesty that didn’t hurt. I did not have any issues with restroom. Taking a shower was difficult because of the drains could get too wet. My husband hooked me up good. I slept in the recliner for 3 weeks or so. Had a pillow under my arms. My son made sure I got outside to walk and to use the breathing things for your lungs. In saying all that I got a new puppy right before my surgery. After a few days I was doing pretty good. Keep the meds on time and you will be fine. My surgery was May 2022.

Thank you so much for this kind and reassuring reply! Maybe it won’t be so bad, going through this. It sounds like they won’t be prescribing me any pain meds though because my plastics surgeon said Tylenol should be enough once the three to four days of numbness wear off from the nerve block. That makes me very nervous, but if it gets too bad I will call and ask for pain meds.

I have a mesh bag thing I got to hold the drains in when I shower, and hopefully I can get it figured out, how to shower safely.

I am glad I have a comfortable recliner to sleep in. I figure it will take about three weeks for me too before I can try to sleep in a bed.

I’m not sure how long I will have the drains in. I have one post op appointment ten days after surgery and one fourteen days after surgery, and I am guessing during one of those appointments I will have the drains removed.

Thank you again so much and I wish you a happy and long cancer-free life!

❤️🌹