New, Overwhelmed, Facing Surgery Decisions

Lefty_Lucy

Hi all,

So glad I finally figured out how to join this forum! I was diagnosed a couple weeks ago with extensive DCIS in the left breast. Had my surgical consultation today and--as I had feared--I'm pretty much limited to mastectomy. No one has told me the size of the DCIS (and I didn't see it in my pathology report), but it extends through most of the breast.

I wasn't crazy about my surgeon. I'm sure all his information about the cancer and the best ways to prevent recurrence are correct, but he says he would only consider a complete mastectomy for me (no skin- or nipple-sparing) with delayed reconstruction. Going to do MRI and genetic testing to find out if the right should go as well, but I had really been hoping for the chance to preserve more of the breast.

He also told me that recovery from a mastectomy takes one day??? That's... not possible, right? I get that it's not as huge of a surgery as many things are, and I think he was saying I'd be in the hospital one day, but I specifically asked about lifting or activity restrictions (I'm usually on my own with very busy 4yo and 18mo all day) and he said it would be better not to do heavy lifting, but not a big deal. I'm really anxious about figuring out how I'm going to handle everything at home and want to be as prepared as possible.

I'm trying to find someone to get a second opinion from. He told me that there were probably surgeons who would do a skin/nipple-sparing surgery for me, but he thought it would be ill-advised.

DCIS is such a rollercoaster. I was devastated to find out I had cancer, then elated it was curable, then devastated to find out about mastectomy.

Thanks for any thoughts.

2yearsurvivor

Sorry to hear what you're going through. I strongly suggest you get a second opinion at a different group/facility. If you're not comfortable with the surgeon, that should tell you something. As to questions of size of DCIS, etc., I'll give you the advice someone gave me years ago when I was first diagnosed: You're the boss, it's your boob(s). I.E., if you want to know something ask, INSIST. If they won't answer you, then walk away and find someone who understands that they work for you.

Spookiesmom

He probably meant 23 hours in hospital as outpatient. Make sure all your body parts are ok. Eat, drink, pee, no after effects from anesthesia. Then some down time at home. You may want to line up some help with the kids, grandma? for a week or so.

TB90

Mx may be the only option if DCIS is extensive. DCIS has a tendency to spread out throughout the breast as it stays in the ducts rather than growing into a mass. You do need a bs that you can communicate with and trust. Even if the info they share is not what you had hoped for, you need to feel that they have your specific needs at the forefront. This is the most difficult time. Sorting out what best practice is for you and finding a medical team that supports this. We hope our medical team is already doing this, but sometimes second or third opinions are required. All the best in this challenging time.

MinusTwo

Yes - get a second opinion. Recovery from BMX is at least two weeks. You shouldn't even lift a gallon of milk and should not raise your arms above your shoulders.

Lefty_Lucy

Thank you all for your replies. I especially appreciate the heads up that mx recovery would be 1-2 weeks; that's more what I was anticipating.

I found a surgeon in town who specializes in the skin and nipple sparing surgeries; unfortunately she's on leave until mid-March.

I anticipated and was not surprised to need a mx. I had just gotten encouraged reading up on skin and nipple saving ones. I'm having a hard time with the idea of transitioning to 0-1 breast. On these boards I've read so many accounts of people who are... I'm sure not happy about mx, but relatively accepting/relieved to be done with cancer. I of course know I can't NOT have a mx. I'm just not coping great, I guess.

I'll keep looking. I just had such an awful feeling at the whole practice I went to, with the physician and the practice in general. I hope I find somewhere I can get good info; right now I feel so lost and I'm dreading going back to the first place.

MinusTwo

Follow your gut. If you have an awful feeling about the practice, don't go back. Go get a 2nd opinion with another group.

MBPooch

100% trust your gut. I switched doctors week 1 and found an unbelievable team who worked together and listened to me. My DCIS was not extensive but due to having implants already and almost no breast tissue it was their suggestion and what I wanted from day 1, to do the BMX. I was able to have direct to implant so the reconstruction happened at the same time as surgery. While my recovery was fairly easy I absolutely would not have been able to care for young children week 1, ideally until your drains are out if possible and moderate lifting was a no go for at least a couple weeks. Plan on help for a couple weeks with the kids but you can do this!

Lefty_Lucy

Thank you again to everyone who replied, and MBPooch, the insight is so helpful. I know I'll get through whatever I need to do; I think not having the information and feeling like it's a big unknown is one of the things stressing me out the most, so even just getting some anecdotal idea of what recovery might be like is so helpful.

Doc 1 said I wouldn't be a candidate for immediate reconstruction -- that it would be too risky for recurrence? I didn't understand but didn't get a chance to press him for more info on that. So if that's the case, I hear the mastectomy alone is a bit easier of a recovery? I still can't imagine 1 day.

I've put in requests today to see two more surgeons; hopefully I can get those appointments set up quickly. One is in town and considered a great surgeon, but her reviews on patient education and interaction are even poorer than Doc 1, so we'll see.

The other potential surgeon is in the next closest city to us, about two hours away, but has amazing amazing reviews and I really liked everything I read about her. I have friends and family in that city so I'm considering it.

VegGal

My team was two hours away. With DCIS, and my case in particular, it was very doable. I just needed to be up there a handful of times for appts and surgeries. I did BMX so no further care from rads or oncology needed. Now I just go once a year to see my BS.

Find an NCI designated center if possible. Trust your gut always.

Lefty_Lucy

VegGal, thanks so much for sharing your experience; that's really encouraging. I am most hopeful for that surgeon... I really hope I can get scheduled with her soon.

Beesie

"Doc 1 said I wouldn't be a candidate for immediate reconstruction -- that it would be too risky for recurrence?"

Hmmm... if there is one diagnosis that usually is eligible for immediate reconstruction, it's DCIS. Should something unexpected turn up - invasive cancer and nodal involvement, or possibly very close chest wall margins requiring radiation - that's where there could be a problem. But the odds of that happening are small when the preliminary needle biopsy diagnosis is DCIS.

It sounds to me as though this first surgeon told you what he can do, or what he prefers to do, not what your options are given your early stage diagnosis. And he tried to discourage you from listening to other surgeons ("He told me that there were probably surgeons who would do a skin/nipple-sparing surgery for me, but he thought it would be ill-advised.).

Skin-sparing mastectomies and immediate reconstruction are the norm these days. If your DCIS is widespread, there could end up being a close margin by the chest wall or the skin, but you can deal with that if it happens. I had a breast full of grade 3 DCIS with comedonecrosis - as aggressive as it gets, plus my biopsy had already found a microinvasion of IDC. My surgeon had no problem doing a skin sparing MX. Nipple-sparing were not done in my day, but I don't think he would have agreed to that because some DCIS was right behind the nipple. I did end up having a 1mm surgical margin at the skin. I asked about whether rads would be advisable and my surgeon said "no", since there was that 1mm and because recurrences against the skin are easy to catch when they are tiny (a nodule forms which is easy to notice/feel). Despite that, at the time of my exchange surgery, when the expander was removed and the implant was put in, I asked my plastic surgeon to remove a bit more skin on both sides of the scar line (I knew from the pathology report that the close margin was right near the scar line). I'm glad I did that but in the end it was unnecessary because the pathology turned out to be clean and it's now 14 years later and everything has been fine with no recurrence.

Good luck with your second opinion! This first surgeon sounds like someone you want to get away from!

Lefty_Lucy

Beesie, this was so encouraging to read. My DCIS sounds a lot like yours, so knowing what you were able to do gives me a lot of hope. Mine does go throughout the breast, close to the skin, under the nipple. Also comedo necrosis and “extensive lobularisation” — haven’t figured out what that means yet.

I’m definitely pursuing second opinions. The further I get from that appointment, the more I dislike it. I think we were scared and overwhelmed, both by the news and the general vibe of the place. I’m putting together a binder for all my info this weekend and plan to have a lot more questions next time, and my husband will be in charge of them (he’ll be better at it than me). And hopefully one of the next docs will be the right one

redhead403

Please get a 2nd opinion. My breast surgeon was very supportive. I had nipple and skin sparing mastectomies. I had microcalcifications throughout both breasts. He didn't bat an eye when I asked for that..Both he and my plastic surgeon are very happy with results. Both of my nipples were clear of DCIS and IDC.. I did have margins that weren't clear, so I am having radiation. sometime I will have to post a picture.

HopeWins

please, please don't be afraid to go 2h to get surgery/treatment you're comfortable with. Lots of red flags to me in your 1st appt - not a full explanation of your diagnosis, no immediate recon, no nipple sparing option, chance of recurrence fear factor. Any one, or all of things, could be true but hard to believe without explanation.

Everyone will have different experiences but I wouldn't plan on anything less than 3w recovery for a mastectomy. It's a good 2-3 months before the rib tenderness goes away. The SNB is also a recovery in itself. I had limited DCIS and opted for bmx, immediate recon - DIEP - and was back to work in 4w. I could have done 3w working from home but I work hard and would have overdone it. You need to let yourself heal. Please plan on doing nothing for a week and transitioning to really light things at week 2 and a little more week 3. Im not trying to scare you, because it's totally doable, but its major surgery and you need to be prepared. Even if you cant have immediate recon, you probably want to have tissue expanders placed during the mastectomy if you're going to have recon in the future.

Oh hon... I feel for you and your gut is good in telling you to get a second or third opinion. My gut told me to keep looking and I'm glad I did. I ended up going about 1.5h to a surgeon I was comfortable with and I have no regrets. Best of luck to you!

LAstar

Lefty_Lucy, I live in Oregon and I had my BMX/SGAP in New Orleans and revisions later in Charleston. The plastic surgeons in my little town are terrible. A friend introduced me to women who'd been injured by these local hacks and had travelled to be treated by experts in reconstruction. Travelling was a hassle, but my local breast surgeon (a dear man) was willing to follow me locally after my surgery and my results are very good. I also had a great time with friends and family on these trips, crazy as it sounds! DCIS isn't as urgent as more advanced stages, so we have some time to research. In every step, trust that little voice inside. Best wishes to you!

Lefty_Lucy

Thank you all so much for the thoughtful replies. I'm not sure if I'll address everything here at once; my mind is a bit of a mess. But, I had my MRI and second appointment with that initial surgeon this week. It was a better meeting, for sure, but I'm still not sure I want to work with him.

He did give me a lot more information on why his stance is so conservative. He's one of just a few breast cancer surgeon specialists in our fairly large city, so he sees a lot of cases, including a lot of women in their 30s and 40s (I'm late 30s), several each week. He says he's usually happy to do skin and nipple sparing and immediate reconstruction. But the cases that he sees like mine that are most aggressive and most extensive (It's really basically the entire breast, both inside to outside and top to bottom, about 15cm at the widest point, right behind the nipple, right next to the chest wall, and close to the skin) are less common (1-2/year) and he has had worse outcomes when he's done skin sparing/nipple sparing, and immediate reconstruction. So I understand his position a bit more, but it does sound like others here had very similar cases and their surgeons were less conservative.

He was less condescending and I felt like I got more information. He seemed both encouraging about getting a second opinion, but said "when you get your margins back, then you'll see." So... still pretty scare-tactic-y. I also have a family history of young breast cancer, so he is recommending double so that I don't have to do Tamoxifen afterward. It's all feeling like a lot for what is supposed to be pre-cancer, NBD.

I have a second opinion set up with someone in town who is supposed to be a great surgeon, but has even worse reviews for patient education and bedside manner, so we'll see how that goes. I also have an appointment with the surgeon who is 2 hours away, but not until the 31st. I even put my info in with MD Anderson, which is 3.5 hours away. I don't know of someone specific there, but figured why not--they may have someone more experienced with extensive DCIS.

I'm optimistic about the second opinions, but also very up and down. I burst into tears today when my blood draw hurt more than expected, not really because of the pain, but because it's all just a lot. I've also felt extra tired and started having pain in my affected breast... so I've been pretty anxious. I'm going to my PCP tomorrow to see about anti-anxiety meds.

I'm just rambling now. Thank you again so so much to everyone for the replies. I'm really encouraged by them.

LAstar

It's encouraging that he's giving you lots of information. It does make sense given your age, your family history, and the extent of the DCIS to be conservative. It's a LOT to take in. You are doing a great job of doing research and reaching out for 2nd opinions. Get a few things done on your to-do list each day and then try to give yourself a break. This part is exhausting. It's almost harder than the surgical recovery because everything is so unknown right now. After surgery, the cancer is out and you have answers and a path forward. I felt a lot of relief when I decided on my treatment. Then all I had to do was prepare and wait. I hope you can find ways to distract yourself and give your brain a break. I did a lot of core exercises in the months before my BMX and was glad that I had - it helped a lot for getting out of bed and sweating the stress out while I figured this all out. Best wishes to you!

blah333

skin sparing is a risk -- due to your age and large size of the DCIS, and that it is Grade 3, you are already at higher risk for recurrence. You may also want to see if radiation is a good idea. I had multi-focal DCIS that was 6cm, and I was going to get mastectomy anyway to avoid radiation (they initially handed me lumpectomy brochures but after MRI and how much lumpectomy would mutilate my breast they agreed mastectomy was probably my only option). Now 2 years later I am having recurrence scares and wish radiation had been offered initially. However it is also more daunting to undertake over the left side (heart) and that scares me.

Read some articles about DCIS recurrence.. my surgeons downplayed the risk saying only 1-2%, after bilateral mastectomy however it's more like a 6% chance and even higher for women under 40, with large cm DCIS or multifocal DCIS, and women with grade 3 DCIS.

I also got a double because my mother had DCIS on one side and then again 5 years on the opposite side. I saw how frustrating that was to have to go through, and she had to redo her reconstruction. She was 50, I was 35.... it made sense for me to take the most extreme measure (bilateral mastectomy). I also wanted to avoid taking hormonal drugs.

Beesie

blah, do you have links to what you've read about the higher recurrence risk after a MX for women who are younger or who have large and/or multi-focal DCIS? I know that close surgical margins after a MX take recurrence risk up - and rads is often recommended in these cases - and I'd be very interested to read more about these other factors and their affect on recurrence rates.

And good luck... I really hope your situation turns out to be a recurrence scare, and not a recurrence!

MinusTwo

Without any basis in fact, I think some of the chance of recurrence depends on the expertise of your surgeon and how thorough they are the first time around.

LAstar

The Van Nuys Prognostic Index was used to assess recurrence risk after MX for DCIS with risk factors based on DCIS size, nuclear grade, necrosis, margin width, and patient age.

https://www.ncbi.nlm.nih.gov/pubmed/20859695

https://academic.oup.com/jncimono/article/2010/41/193/891277

Lefty_Lucy

Ladies I have found my surgeon and I am so relieved!

My first second opinion appointment was yesterday and it was great. The practice was a much nicer place. But the best part was the surgeon seemed very bright, very experienced, talked through options with us, was upfront about the scary parts about my case without fear-mongering.

She agreed with my first surgeon: no nipple-sparing, but I wasn't really expecting different. However, he had said that the DCIS went right behind the nipple, but she explained the MRI actually shows the ducts in my nipple lighting up with DCIS, which for some reason was shocking and disconcerting, despite knowing it's basically the whole breast.

But she also said even though the cancer is pressed right up against my subcutaneous fat layer, she has no problem with skin-sparing surgery with delayed reconstruction. "What's the worst that will happen? We'd just have to go back for more skin if your margins aren't clear."

It's only a small difference in the surgical approach, but I just felt so much better. She's also basically a peppier version of Moira Rose, if anyone watches Schitt's Creek, and I could not love her more. I'm so relieved and so ready for my date. I did my pre-op bloodwork yesterday and they said they'd call and schedule me in about two weeks once the results are in!

Beesie

Ah, that sounds better. Yes, just a small difference in approach, but what this second PS is saying is much more in line with what I've seen on this site in cases where women have extensive DCIS. Skin-sparing, but not nipple sparing when the DCIS is extensive and close to the nipple because DCIS is in the ducts and the ducts go right into the nipple. And as I said, that was what I had done even 14 years ago, so it's not a new approach.

Now you just have to wait till the surgery date. That's never fun, but try to keep busy. There's lots you can do to prepare your home for the post-surgery period when your activity be restricted.