Advice Needed: Facing Double Mastectomy After Lumpectomy

Had a double mastectomy on Feb 5. I set-up some appointments to get my hair washed and was really glad I did. Make sure you ask to see what your doctor ordered for your pain meds and at what intervals. I had a minor complication but led me to having more pain and combined with a horrible young night nurse, I was constantly behind in management. If they put ‘batteries’ on your surgical bra, ask the Dr. exactly how they work. I was confused, no one helped. Ended up calling my plastic surgeon in the middle of the night. He said I was the only patient in fifteen years to ask…I took that as a complement. Attention to detail. Best of luck!

Thank you so much! Are the Batteries for the drains to work? Hope you are mostly recovered by now? I am the most worried about the drains and keeping them from moving around

Hi, Terri, the drains shouldn't move. You can purchase clothing from Amazon that have pockets. The hospital gave me a "belt" with velcro straps to hold my drain and that's what I used. I bought a mastectomy pillow bundle off Amazon that includes a mastectomy pillow, seatbelt pillow, a shower lanyard for the drain bulbs, and 2 breast gel packs that you can use for hot/cold therapy. I used a wedge pillow to sleep (it helps with getting in/out of bed). I also took some tylenol before getting my drain removed, it helped with the pain.

Thank you so much! I think I have purchased all of those things but great to hear that they will really help.

Hi Terri, I too have ILC and was told last week that a lumpectomy would leave me with only 40% of the cancerous breast and it would be disfigured. So I have decided to do a double mastectomy also. Was going to do reconstruction but after reading about the % at risks that occur in (especially in older) women, I've decided to pass on that. Not knowing if I'm going to need chemo or not until after surgery I decided I don't need one more thing to worry about. Like you I am very concerned about having this major surgery and the associated pain. At Stanford they don't even keep you in the hospital overnight and every time I bring up my low tolerance for pain with the surgeon she just seems to shine it on so I'm very concerned.

I completely understand your fears as I share them. I may be able to stay overnight but I won’t know until the day of the surgery. And I agree about the reconstruction. I am 58 and just keep seeing people having complications with reconstruction. It just doesn’t seem worth it. Do you know if you will have a visiting nurse after? Or can you ask for one? That might help with the pain med issue. If the nurse feels you need it, they can request other from the dr. Also when I woke up from my lumpectomy (April 22) the nurse in recovery felt I needed it and spoke to my surgeon. So tell them right away if it hurts. Although I can tell you that my surgeon did an informal study in 2024 of his mastectomy patients and he said they rarely needed strong pain meds. I told him I was going to break that streak. I also have Crohn’s disease so I can’t take Advil or any anti inflammatory meds. When is your surgical date? Mine is May 22nd.

Terri, thank you for the info about visiting nurse. I will ask my doctor. Stanford for the surgery will be is about 4 hours from the small town I live in so I'm not sure how it would work but I will find out. Eye surgery date will likely not be until mid to end of June because they are booked out that far. I find it interesting that they tell you how important early diagnosis is and because they're just aren't enough doctors by the time I have my surgery it will be 5 months since the confirmed diagnosis. And that's 3 months after I found a look before I could get into the doctor. I am staying positive for a good outcome though. I'll be sending positive thoughts to you for your 5/22 surgery.

Oh I agree and the waiting is the worst part of it! The end of June must seem like an eternity. My dr did tell me that most ILC is very slow growing so I am sure it won’t affect your outcome, just your stress level. I will let you know how mine goes and if I have any good suggestions.

Yes I look forward to hearing how your surgery goes and how you are doing.

Terri, I had the double mastectomies with skin and nipple sparing surgery with saline implant reconstructions. My tumor was tiny but very aggressive and triple negative, BRCA 2 genetics. I’m glad I had the aggressive surgery because a second tumor was found. Honestly, the pain was little to none as I initially had spinal blocks and I was able to be discharged with 4 chest drains that same night. Stay positive, and my prayers and best wishes to you.

So glad you did so well with such a complicated surgery! And it continues to amaze me that so many people have cancer found that was not detected on any of their screenings. My dr said he wouldn’t be surprised if we find more in the same breast or even the other one as well. Thank you for the well wishes and I send you the same!

Thanks Terri:)

I am reading through this thread and am sorry to hear of everyone’s pain…. I am having a mastectomy in June after 2 attempts of trying to avoid it(lumpectomy). I have heard that it is not very painful at all, but after reading here I have some concern… can I ask how long ago your mastectomy was(this is for anyone who is willing to share that hasnt already of )?

Hi, Michelle, sorry to hear that you had to go through 2 lumpectomies and now a mastectomy. The pain wasn't too bad, I took the oxycodone and tylenol combo for the first 2-3 days and then only tylenol as needed. My mastectomy was 5 months ago. I have sporadic pain where the drain was, and still some numbness, but I'm really hoping that my nerves will heal and I regain some sensation.

I had a double mastectomy Feb 7th 2025 and had to go back March 14th for a axillary dissection! I had no pain the first week! Then the second week it was mostly a pressure like they were tightening my bra to extreme! I actually used my pain medication around 3-5 week mark! Then at like 2 months it just stopped hurting! Every once in a while I get a pain in one or both but only lasts a second! I had expanders put in which is what I thought was causing the pain but it wasn’t. I start chemo this coming Tuesday for 16 weeks! Yuk

I had the same problem sort of. Because my cancer was super aggressive I ended up on chemo and than a DMX. The DMX was much easier than the lumpectomy due to not having a repeat of lymph node removal. So glad I did the DMX because even after chemo I had scattered DCIS that in my mind would have eventually become invasive. Good luck! Surgery isn’t that bad.

I’m in agreement that the double mastectomy pain was small, but the axillary node removal area was a bit more tender but not horrible. I managed with Tylenol and arm elevation. I also had to go back for more node removal over a year after my initial surgery due to regional spread to one single node, not seen with the initial surgery and removal of three nodes at that time. I’m still a bit sore 7 months later, but tolerable. I did require 6 months of aggressive BRCA related chemotherapy prior to the second node removal, and following chemo my PET was clean. I’m headed for another PET scan next week, following 3 more months of Xeloda as chemo and am currently being treated with Lynparza, hopefully working as preventative care. I wish immunotherapy was permitted but not for me and autoimmune concerns. I’m wishing everyone the very best, agreeing that this journey is nerve wracking at times, and seems unending, but I am very grateful to God, family support, friends and a wonderful health care team 🙏.

Did you have chemo before your lumpectomy? I will have a lumpectomy soon, but they want me to do chemo for 6 months before to shrink the tumor and kill possible lingering cancer cells. My mass is not that big from what I have read 1.4 cm. Thank you.

I recall being told that a breast tumor 0.5 cm or 5 mm is offered chemotherapy. I’m sure other factors such as age and overall health may be a part of the decision too. In my surgery, a second tumor was found. The Oncologist that I had with surgery didn’t require chemo because both of my tumors were under the .5 cm mark. My regular Oncologist really felt that my 2 tumors occurred because of the aggressive growth rate, feeling that the “one” tumor actually broke off into the “2” found. That thought was offered chemo because added together, the size was over 5 mm. My initial nodes and margins were clean, but I still developed a regional spread, feeling the cancer was in my blood, as tumor markers were elevated from the very beginning.

Thank you ladies for all of your feedback! Sending positive vibes to all of you. Since my diagnosis is non invasive DCIS I do not require chemo (at this time). I am hoping it stays that way following surgery; so far each surgery has revealed more cancer cells than originally thought which is why I need the mastectomy now… wishing you all the best in your journey and recovery

So I had the DMX yesterday around 1pm and was able to go home at about 7pm. I am doing ok at home. It really isn’t too painful. The surgeon did feel that I needed to have some muscle removed as well. Described as a sliver of the muscle. Just to be sure it hasn’t spread there. So the left side where the muscle was also taken is definitely more painful than the right side. There is almost no pain on the right side where they just removed breast tissue. I am very worried that they will find cancer in the muscle tissue and am not sure what that would mean for follow up treatment. We had been thinking no chemo as my oncotype score is 19 but not sure if that would change anything. I will post here again as my recovery continues. I hope it helps those of you still waiting on your surgery.

Thanks Terri, I have been thinking about you and hoping it went well. Glad to hear the pain is tolerable. Praying no chemo needed. I have mine 5/30.

Karen , so glad you got scheduled earlier than you thought! Were they able to set you up with a visiting nurse? Mine is coming today for the first visit.

I asked the surgeon and she said they don't do that. I will wait until I get home (130 miles away) and if me or my husband think we need that I will contact my local oncologist to setup.

I had the double mastectomy several tears ago and honestly it was one of the easiest and least painful surgeries I ever had. I attribute that to having not chosen reconstruction. At the time, women who chose to have reconstruction were in pain for much longer than I was. Perhaps that has changed. Good luck to you.