ADH, planned lumpectomy... What do I need to know?

famousthecat

First post, what a dubious thing that is! I went in for my first annual mammogram (got one last year for a different issue, so we have another set of images to compare against), and they found grouped, heterogeneous microcalcifications which we then did a magnification on. Radiologist couldn't tell if we were okay or not, so they did a biopsy and diagnosed me with atypical ductal hyperplasia. The biopsy was sheer torture and highly traumatic. I was told I would be numbed, and instead I felt everything. I have a very high pain tolerance and do not think I live through that again. I know that sounds crazy because CANCER, but I really cannot do that again. Two weeks later, my entire breast is a giant lump/hematoma, and I've got nerve pain shooting through my breast, side, and back. That's a little beside the point, I guess, but just some background.

A few things from my first consult with a breast surgeon: they estimate my risk at 30% chance over my lifetime to develop breast cancer based on these findings and my history. He also showed me that the location of the clip they placed during the biopsy was not at all where the main area of concern is (it was hard to tell how far away it was, but the doctor asked me if they had a hard time getting a sample and it was obviously NOT near the group of microcalcifications), so now I'm very concerned they may not have even gotten a good sample, which really sucks given how traumatizing the biopsy and aftermath have been. He recommends a lumpectomy to remove this part of my breast and test for cancer, and he urged me to move fast.

Given that the biopsy was so shockingly traumatic and nobody told me that I would experience any of what I have experienced, what can I *really* expect from a lumpectomy? I know it must vary widely from person to person, depending on location of tissue being removed, how much is removed, etc., but I would really love at least some help knowing what I can expect from people who have actually experienced it. Aside from just preparing myself for the degree of trauma I might experience during it, I have two little boys and I'm the primary caretaker. I need to figure out how much help I'm going to need.

Oh, and? I'm moving to a new state a week from today! So I have a second opinion/consult with a breast surgeon in my new town (Grand Rapids) on July 9. Wheeee, fun times!

MelissaDallas

I thought mine was easy. Quick outpatient surgery. I think I was in at 10:00 or 11:00 and home in several hours. I think I took one pain pill after I got home and then Aleve a few times. I used the little cold gel packs for a couple of days. I had lifting restrictions a little longer than most because I was glued instead of steristripped.

famousthecat

@melissadallas This might be a dumb question, but I realized I didn't think to ask my first doctor: were you awake for it? Or did they put you under for it? I'm so hopeful this experience is not as horrid than my biopsy. It has to be!

The area of concern is also quite close to the surface in my breast, so I'm hoping that also makes it less invasive and painful. A girl can hope... Thanks for sharing, I really appreciate it.

MelissaDallas

Nope, I was asleep (briefly). Woke up pretty much ready to go. I actually argued with the nurse that I didn't want to take a pain pill (I didn't really hurt and thought it might make me sick in the car.) I really thought mine was easier than the stereotactic.

famousthecat

I'm actually glad that going under is an option for this, I just wasn't sure. I had wrist surgery a few years back while awake and I managed it fine, but after the biopsy I'm not sure if I'll be able to keep it together being awake. I had the stereotactic, too. I can't imagine much being worse than that experience, but who knows! Thank you so much for sharing, I appreciate it.

bikegal

I had a lumpectomy a little over a week ago. They used "Mac" anesthesia, which stands for something I'm sure, but is the kind they use when you get a colonoscopy. It isn't general, so you don't have to have a breathing tube, but I was not aware of anything and as far as I know, I fell asleep as soon as I got into the operating room and woke up after it was over. I took tylenol for a couple of days and used ice packs and as long as I kept a supportive bra on, I was fine. I haven't needed any pain meds since about the 4th day after surgery My lump was deep inside the breast, and there is a lot of bruising. (it was a radial scar, which was benign.) I wonder why your biopsy was so painful? Have you gotten any explanation as to why the numbing didn't work? I've had a couple of biopsies and a radioactive seed implant, and the pain from the numbing itself varied according to the skill of the doctor, but once it got numbed, I didn't feel a thing.

Ingerp

famous--I'd just echo all above. I had ALH 10 years ago, had an excisional biopsy for that, then lumpectomy + re-excision in 2016, then lumpectomy last year. The surgeries are really easy with a quick recovery. I think I treated myself to prescription pain meds for a day or two (really just because I had them), but I know a lot of women do it with only OTC meds. It sounds like you had an unusually bad biopsy but I wouldn't be afraid of the lumpectomy--you'll sleep right through it!

famousthecat

bikegal, this sounds SO much better than I feared. Thank you for the reassurance (and I could totally handle that level of anesthesia - that sounds like the best of both worlds, not being aware but not having all the risks and yuck of being completely out). I have not followed back up at all with the people who did my biopsy, but I probably should. It's just too much for me to address at the moment emotionally, to be honest. It was torture. I've talked one other friend who had a very similar experience with their biopsy - felt everything, horrible bruising and pain for over a month afterward. They also took 11 different samples, 7 in the first round when I felt everything. The radiologist afterward, when looking at the gigantic hematoma that took up my entire breast, said, "I told you there might be a lump." And then when I said how excruciating it was, she said, "That was probably when we hit the blood vessels. Wow, you have a high pain tolerance - most people scream when that happens!" So... I just kind of don't want anything to do with them, especially since we are moving to a new state in less than a week. Just need to put it behind me for now.

famousthecat

Ingerp, thank you for this and for the reassurance! If you had to care for two young kids, how long do you think you might need help and support after getting through those procedures? A couple of days maybe? We don't have family in our new town, so I'm trying to figure out all those fun logistics, too.

MelissaDallas

famouscat, you will have a restriction on lifting for a matter of days. I can't remember how long, but it was five or ten pounds max. You won't really need any help beyond that. I could have easily gone to my desk job the following day.

Ingerp

I think Melissa hit the primary concern--I think you're not supposed to lift more than 10 pounds for a while after surgery, although I flew cross-country with a big piece of luggage in tow a few days after my last surgery. If you can arrange it, I think being able to do nothing the day of surgery and the day after will most likely be enough.

k4523

famousthecat, I’m so sorry your biopsy was so painful. I’ve had two and the radiologist continually asked if I felt anything and if I was doing ok. They should have given you something stronger.

After my first biopsy I had a lumpectomy with the local, you have the choice of what you want. Woke up, went home, kept ice on it that day and took OTC pain meds that night. Went to work the next day and didn’t take anymore meds. I did have a desk job though.

I would think you could get by with help just the day of surgery; however everyone is different, and I would suspect it depends how large the lump or area they remove is. If you can have help available the day after, in the event needed, it would be nice. Hopefully your surgeon can give you an idea ahead of time.

Best of luck to you! 🙏

JoTheGreek

As I've never had a biopsy prior to my lumpectomy, only from what I read here, horror stories about biopsies, I feel lucky that my doctor sent me directly for a wide excisional biopsy. The operation and the recovery was a breeze plus the certainty that no cancerous cells (if any) were left behind as they remove a much wider portion of the mammary gland than the actual size of the lesion as shown in imaging. For worriors like myself the excisional biopsy was the right approach. No pain whatsoever as they prescribe ibuprofen for a couple of days, personally I abided by the weight lifting restriction for a bit longer (worrior here like I said...), never needed ice packs as my doctor also prescribed OTC serrapeptase supplement for couple of weeks, my only concern at the time was the 9-day waiting on the histology, just that. Good luck, sending my benign thoughts your way.

famousthecat

I wanted to update here in case it helps anyone. I had the excisional biopsy almost two weeks ago, and the recovery was SO MUCH smoother than my biopsy from hell. It was such a breeze! I didn't even need the pain meds they prescribed and barely took over the counter stuff. I did probably overdo it yesterday with carrying my three-year-old, and I've got my post-op appointment (and pre-op appointment since they found DCIS hiding away in there) in two days. So... more surgery ahead, but at least I'm not feeling so traumatized anymore.