DCIS, what to do

BebeZF

I would like to hear from women with DCIS diagnosis. What are the options you have selected and are you OK with your choice. I am newly diagnosed, still in a bit of shock. I am in my mid 40s, no family history of b/c. Need to make a decision and don't know if mastectomy is better for a peace of mind or lumpectomy and Tamoxifen. Docs have different opinions so I am confused and lost.

Bebe

Luckynumber47

When I found IDC in my left breast I thought, ok, I'll have a lumpectomy and radiation. Then they found DCIS in the other breast. Ok, lumpectomy there too. Then the pathology came back on the DCIS - high grade, ER/PR negative. I decided if I could grow an aggressive tumor like that it would just be better to do a bilateral mastectomy. My dr agreed.

While I feel like that was the perfect decision for me, I think your situation is different. You are still young and breasts are an important part of your femininity. Studies have shown that lumpectomy is just as effective as mastectomy in halting cancer. Unless there is something very aggressive about your DCIS a mastectomy is way more surgery than you need. Unless it is very large your dr should be able to remove it with a lumpectomy and get good clean margins and you'll be able to put this all behind you with minimal surgery.

I'm curious what your docs recommend and why.

gently

hi Bebe and Luckynumber, I am newly diagnosed and set for a lumpectomy & sentinel node biopsy next month. So in a way I'm right between you two. I have been resigned but upbeat about having a cancer they can catch, but last night the weight of the long term unknowns really got me. Not to mention the realities of facing surgery.

Bebe I am 56 as of last month, lots of family cancer history but not b/c and nothing I was really exposed to directly. I didn't get conflicting advice and like lucky 47 would be interested in the docs' reasoning if you feel like sharing.

Mine is 5 mm and hasn't reached lymph nodes visibly. I have some calcification around the spot so they're doing sentinel nods biopsy to be sure. Then radiation, either full breast or partial depending what they find in there. Then hormone therapy, not sure which til they figure out where I am in menopause. I live in the city so I could doctor-shop but I like the team I got so I'm full steam ahead.

Glad to have found this community and will be watching out with carefor word of how you two are doing.

MTwoman

Hi Bebe,

I had DCIS (ER-/PR-, HER2-). Initially, I was 38 when I found the lump and got my surgical referral pretty quickly. The day I met with my surgeon, he didn't like the lump at all (the first one to say this) and drew some fluid out of it, which he sent for cytology (instead of pathology, liquid samples go to cytology, which gives less specific information). It came back as adenocarcinoma, but we didn't know invasive vs in situ. He told me we could schedule a biopsy or lumpectomy, my choice. It was right before Christmas and I told him I just wanted it out, so he scheduled my lx and sentinel node procedure (so we wouldn't have to go back in for them if we had good margins). I was relieved to get my DCIS diagnosis, but my nurse navigator encouraged me to get a second opinion on pathology, as any missed micro-invasion could affect my outcome. I had the hospital send off my pathology for a second opinion to the guy who wrote the book on DCIS and got his report back the day before my radiology mapping appointment (the one where they give you your dots and set up your radiation protocols). His recommendation was for an MRI to look for more cancer, as my DCIS architecture type is prone to multi-focality and as a younger woman, I still had dense breasts. He was right, the mri found 2 more areas of concern in another quadrant, that were biopsied and also found to be DCIS. That is why I ended up with mx, lx in multiple quadrants can leave you with less optimal cosmetic results. Because I was triple negative, I was not put on endocrine therapy, and at the time, radiation was not considered after mx for DCIS. So I was finished after several reconstruction surgeries (I threw a hematoma after my lx, so they did my surgeries in stages to lower the risk of having more hematomas or seromas). I still get scanxiety, but have been NED for 14 years and don't really think about it very much any more.

Hope this helps! Good luck in making your decision and let me know if you have any additional questions. There are so many amazing women on these boards, you will find support and experience no matter what your decision or issue is. Just ask. Sending you healing light and hugs.

Sitti

Hi BebeZF, gently, MTwoman, & luckynumber47,

I'm so sorry to meet under these conditions but thankful for all the encouragement that can be found here. I was DX 12/5/16. I first chose lumpectomy followed by radiation. I had the lumpectomy 1/12 but still need one margin wider. Once home, looking at my pathology (high grade, ER/PR negative, comedo necrosis, large area) I started researching the specifics and now I'm leaning toward MX instead. I've since met with various drs and gotten differing opinions. I think it really comes down to a personal decision. My nurse navigator as well as the drs told me there is not a wrong decision (LX vs MX). I think you have to weigh out both sides and see which option best fits you and your makeup. Of course there may also be other variables that may dictate a certain protocol too. As badly as I would like to just stay with the lumpectomy & radiation, I don't think I can deal with the what ifs of such an aggressive DCIS. If it had been different grade/size/etc I may feel differently, I don't know. I still wonder if I'm making the right decision but once I'm past all this I want to put all the questioning behind me. That's just me. I'll be following this thread to see how you all do, as well as watch for more information regarding this subject.

Mtwoman & luckynumber47, it's good to hear from those on the other side. Can you tell me what kind of things to be prepared for post op MX, or things to do to prepare physically before MX? I am a little nervous about the possibilities and would love to do whatever I can to prepare ahead.

Thank you wonderful ladies for your posts.

MTwoman

Hi Sitti,

" Can you tell me what kind of things to be prepared for post op MX, or things to do to prepare physically before MX?"

I would encourage you to think about comfy jammies, top that buttons up the front and maybe a nice robe or two. Great excuse to go buy yourself some new ones if you don't have anything like that. I made some yummy soup for myself, so that I could easily pull it out and nourish/warm myself when I felt like it without difficulty. I got some nice music play lists put together with soothing music, lavender scented candles, an assortment of tea and movies/books. I have problems sleeping on my back, so I got some sleep meds from my surgeon and used pillows on both sides of me to keep me from rolling over in my sleep (that worked pretty well for me). I know some people find that a 'wedge' pillow helps with swelling (so decreases tightness and pain), so something to think about. I think just finding a nice spot where you will set up comforting items for your recuperation can be great. I don't like staying in my bed unless I'm asleep (tends to make me think of myself as "sick"), so a place that I could move to, but still rest and take care of myself. What kind of things pamper you? Do you need a charger there? Better reading light, a foot stool? These types of activities/planning gives you a nice way to expend your energy/anxiety while you wait for your surgery date. I had my surgery first thing in the morning, and by the time my surgeon rounded on me after lunch, was really ready to go home, so was discharged and spent 0 nights in hospital. I didn't take pain meds during the day for more than a couple of days, and then only at night for a week or so after that. Gentle stretches were amazing as far as pain reduction for me. Once I started doing them, I was on my way to feeling better. I went back to work within about 10 days, and found that I could wear a baggy sweater to hide my drain until it was removed. Work was actually a nice way to refocus my mind on something else. Not sure if I forgot anything, but please feel free to ask anything else specific that you wonder about. message me if you'd prefer. good luck

amy

Luckynumber47

Hi Sitti listed some great ideas for preparing for surgery. I loved having new jammies and robe. I bought a Amoena Softee camisole to hold the drains and I really liked it but once the drains were out I never wanted to see that cami again. I bought too many bras. Most were fine in the beginning when I was healing but don't have what I want now (pockets)

I couldn't reach the top shelves in the kitchen for quite a while. I couldn't garden for a while because the Drs don't like you bending over. Mostly your body will tell you what's ok and what isn't. I can do everything now - tons of heavy duty gardening, major remodeling in my kitchen, painted the outside of our house.

I was surprised by how tired I was every day. I'd hit a point every afternoon where I just had to sleep. It took a while for that to go away. My Drs had me take vit C and zinc before surgery. They said it helped with healing. I listened to guided imagery before surgery to help with anxiety.

Regarding your high grade DCIS - I hope someone with the facts will chime in here. I almost feel like most DCIS starts aggressive and then becomes less so as it mutates to become IDC. That's just my own personal opinion but it has made me wonder. I'm super happy I had a BMX. It was exactly the right decision for me but you sound like you don't really want one. And that's fine too. Do what's right for you. I was happy I avoided radiation and didn't have to worry about margins. I also wanted to avoid future tests and future surgeries and I think having a BMX helped stack the deck in my favor. Another reason I decided on BMX was because my DCIS didn't show up on my mammo, only on the MRI. I was afraid I could have things lurking there in the future that escaped detection.

Make a list of all your pros and cons for having a lx or mx. It should help you clarify your thinking.

Feel free to pm me if you have any other questions

Hugs, Lucky

ChiSandy

One more thing—either go to the “mobility aids” section of the drugstore or to Amazon and buy at least one “reacher” (two if you live in a 2-story house) to retrieve and put back stuff on high shelves as well as minimizing bending over to pick stuff up off the floor. In a pinch, if you have long BBQ tongs, those’ll work.

BebeZF

Luckynumber47 Gently MTwoman Sitti I appreciate all the replies, feel close to all of you ladies and appreciate the feedback. It sure sucks that we have to go through this. But it makes it a bit easier to have your support.

I have different opinions from different doctors after getting back from my last set of appointments today. The general consensus is that a lumpectomy is the best decision right now due to the size, grade and overall biopsy results (DCIS, stage 0, grade 2). One of the doctors suggested a possible mastectomy due to my younger age and a long term peace of mind. She knows how paranois I can get . Still weighing it all in and trying to decide. Leaning towards a lumpectomy as DX came back ER+/PR+ HER2-, which makes me a good candidate for Tamoxifen. I am very concerned with the side effects, but thinking I can suck it up as long as it helps me long term. I guess the biggest deal is to make the decision and stick by it and hope for the best.

xoxo to all of you and let's keep in touch

Bebe

annoyingboob

bebe, the thing i have learned is to go with the flow. i had dcis discovered by new calcs on a mammo. stereotactic biopsy showed dcis. i know you can get upgraded to idc or even have positive margins with a lumpectomy. i chose to start with lumpectomy and then decide on final treatment based on path. at the time i was leaning towards a bmx just to escape xrt and tamoxifen. so then i had lumpectomies and bilateral reductions. only a 7mm area of dcis found in the same spot they had done the biopsy on final surgical path. all the other tons of tissue they removed with reduction was negative. so with that in mind, i decided to stick with the lumpectomy and continue on to xrt - im starting partial breast xrt next week - just 5 sessions every other day. ro says its tolerated quite well. then im supposed to take tamoxifen, but if i don't tolerate it, ill stop. if i get a cancer recurrence, ill do a bmx at that time. but in the meantime im enjoying my newly reduced breasts.

everyone is different, but thats my story. consider starting with a lumpectomy and then deciding. if you have small breasts and positive margins or a large and multifocal area of dcis it may make sense to go on to bmx. but if its tiny like mine and can be removed, you may be able to save your self a massive surgery...at least for awhile. good luck!!

edited to mention im 47, premenopausal, and maternal gma died of breast ca, but i am NOT brca+.

Annette47

I was diagnosed a little over 4 years ago with a small area of DCIS along with an even smaller area of invasive disease. Honestly, a mastectomy never really entered my head - just seemed like overkill to me. I had a lumpectomy with sentinel node biopsy, radiation, and Tamoxifen. I didn’t really have any trouble with any of those treatments.

All I would say is take your time and be sure of your decision, particularly if you decide to have a mastectomy. If you have a lumpectomy, and still feel worried, anxious, etc., and don’t think you can live like that you could always go back for a mastectomy. If you choose mastectomy first, there’s no going back. It might be the right decision for some, but I do see people who seem to be choosing it in their initial panic without really researching the choices, so I would urge you to do some reading first.

Sitti

MTWoman - those are all great ideas, alot of which I would not have thought of, so thank you. It sounds like you recuperated and were back on your feet fairly quickly, I hope I can do the same. I'll be sure to message if I think of other questions, thank you for being willing to answer them.

ChiSandy - The "reachers" are a great idea! I'm only 5 ft so I'm always dragging out step stools to get things anyway but love the idea of the reachers for recovery.

Luckynumber47 - Thank you for your response. Seeing when your surgery was and reading how much you do now is encouraging. It's also helpful to be prepared for the tiredness too, to be mentally prepared. It sounds like reaching is a big deal so I need to start thinking ahead as I'm always joking with my husband that I'm a short person living in a tall person's house (it seems all the cabinets, etc. are high). The Amoena Softee camisole, where did you find it? Amazon maybe?

As for the MX. The surgeon encouraged me that the LX w/RADS would provide same results with less complications. I had reservations but after talking with a friend who didn't have an option, I decided to take conservative route first, I could always do more if I needed but couldn't go backwards. I thought if they don't get it all I'll reconsider. Once LX was done, what was thought to be was 2.5cm on the mammogram was 4.4 cm (I'm small breasted too). Plus the hormone negative factor which makes it more aggressive, with a higher % of recurrence, all the different variables make me feel comfortable with my decision.

Annoyingboob - You make a great point. Some people know immediately what they want to do and others aren't sure. One thing I've found is that nothing in this process happens very quickly (other than the call back for a diagnostic mammo & the biopsy results). I was a wreck starting out but now I'm glad that there has been sometime to calm down and really think through the decisions.

BebeZF - Glad you find encouragement here, keep in touch let us know how you are doing.

Gently - sorry to have missed you earlier, welcome. So sorry you have to be here but you will find a great group of very supportive and encouraging women.

Thanks again to every one for your imput, it's so helpful and encouraging.

BebeZF

Annoyingboob, Annette47

Thank you Ladies

Yes, I made a decision last night to go with a lumpectomy and hope for clear margins. Agree with both of you, going for BMX seems like an overtreatment and emotionally a very tough choice. Especially since 2/3 docs recommend LX. I can always go for BMX later if needed. And hopefully not. Going with the flow will be my motto for the next few weeks. Thank you for your replies. From your DX I see that we are in similar situations. Surgery always makes me anxious, but since the choice has been made, I feel a little better. Good luck to all of us. Xoxo

BebeZF

Sitti,

It sounds like you are making the right decision. I am going to start the same route, I made a decision to go with LX first and hope for the best. I need to know what I am dealing with first before going for a very aggressive treatment of BMX. I have small dense breast so I will have years of worries, but hopefully with radiation and Tamoxifen, all will be fine. Good luck to you and stay in touch. Xoxo

annoyingboob

good luck bebe !!

I know how hard it is to go with the flow. The instinct is to just to do whatever to be done!! But the blessing of dcis, if there is one, is that you have options. So do the lumpectomy, but prepare yourself for more, just in case. If margins come back positive or if it's a much larger tumor than expected, you may decide a mx is best - so expect the worst and if your dcis stays small then you can rejoice!!

This whole process drags on for months. The most important part is to stay strong mentally and trust your team. I'm cheering for you!!

BebeZF

Annoyingboob,

When are you starting rads? Or have you started?

I usually look at the glass as half full so I prep for the best and deal with it if it's not. It helps me sleep at night better this way

Thank you for cheering me on, I am cheering you on as well. You are so great.

I am scheduling my LX and it can't come soon enough. I just want this DCIS out. And then I will think about the next step.

Best of luck to you. Oh and are you planning on taking g Tamoxifen?

Xoxo

annoyingboob

I have already had my first planning simulation 2 weeks ago and the final verification this Friday. Start getting zapped next week. The waiting is the biggest annoyance bc now I feel healthy and recovered from surgery. I plan to try tamoxifen the day after xrt is over (so as not to mix up side effects). We shall seehow it goes. If awful I will stop and just be diligent about follow up mammos and do mx if it recurs. But hopefully I can just go on with life and call this cancer chapter closed!!

The waiting is the hardest - especially the few days before surgery bc there are so many 'whatifs' I confess a little lorazepam was nice to calm my brain and help me zen out a bit preop. Do what you need to do. I'll hold your hand the whole way through!!

BebeZF

Annoyingboob,

After reading your reply I see that we think alike. It's crazy how far I come in just a few weeks. From knowing nothing to actually having some knowledge. I have my LX in 2 weeks, just scheduled it today. Once I know for sure what's in it, after the biopsy, I will make the next decision. I know I will be anxious a day before. What helps a bit is that I had some abnormal cells removed 2 years ago, and it's a similar surgery. But it was not DCIS, and just a precaution. Anyhow, thank you for your support. How terrible that we have to go through this. First two weeks after DX I was so numb. Now I am ready to deal with it and put it behind me. Keep me posted, love hearing from you

Xoxo

annoyingboob

if it makes you feel any better, the surgery was a breeze. Definitely not worth all the anxiety I had built up beforehand!! And recovery was quick. I was back to working my desk job 3 days later with minimal discomfort. Of course everyone is different, but just to let you know that these next 2 weeks of waiting will be the hardest part!! The actual surgery and recovery are a breeze. Then you get a little nervous again for a few days waiting on path reports! So good luck, and I'm happy to help you through with any advice you might need!

Xx

BebeZF

annoyingboob

Yes, waiting for the pathology results is the worst I bet. Especially going through this already after the biopsy...Waiting and waiting and with every day sensing it's not going to be good news. Bad memory for sure. Hoping for a different turn out this time. My 12 year old daughter keeps me super busy so I don't have much time to dwell on things. it's pretty much go go go. The countdown will start next week. This week I will enjoy the weekend and my fam. Wishing you all the best, talk soon

Sitti

BebeZF - just checking in to see how you are doing. Your surgery should be coming up soon right?

BebeZF

Hi Sitti,

Thank you for checking in. Yes, my surgery is on Tuesday, finally. I can't wait to have it behind me. The pathology results will determine what i do next.

How are you doing? How is the recovery? I feel a bit cranky and jumpy, lol. But closer to the surgery date, the more anxious I feel. I guess it's the anaesthesia that I fear a bit.

Xoxo

Bebe

BebeZF

Sitti,

Your MX surgery is in March, right? For some reason I thought you already had it

Bebe

Sitti

BebeZF,

I did have the LX first, that is probably what you are thinking. As far as the surgery, try not to worry, which is easier said I know. The anesthesia was probably the easiest part although I found the whole LX not difficult at all. They put me under but not real deep. I was wheeled into the OR and they said can you help us move you over here, I said sure, and then I woke up in recovery. That's exactly how it happen. I will be praying that it's that easy (or easier if that's even possible!) for you. Please keep us posted, I'll be praying for you!

annoyingboob

good luck!!

I'm on day 2 of radiation. There are only doing 5 sessions, partial breast, with a technique called imrt which is tolerated better than whole breast but same effects. I posted an article link under the feb rads group. See what your path comes back as to see if you are a candidate. So far so good for me. 3 more to go then done.

As for tamoxifen, I'll start after Rads. Here is the article my mo gave me about that - https://www.ncbi.nlm.nih.gov/m/pubmed/10376613/

Good luck with surgery and all of your upcoming decisions!!

Ab

BebeZF

Hi AnnoyingBoob,

Really funny calling you that, as every time I do, I think of my annoying boob too .

Thank you for the message and great info. I will definitely check into that once my pathology comes back. I already know about Tamoxifen, and although it has so many side effects and I hate the idea of a hormonal therapy, it definitely makes sense.

I really like hearing from you so keep me posted on how it all goes.

Big hug,

Bebe

BebeZF

Sitti,

So appreciate your prayers and support. Will let you know how it all goes. And I will pray for you and your surgery in March so it goes well for you.

I am watching a documentary titled "Truth about cancer" and already got some good insights. Hard to find time as the episodes are quite long with a lot of fluff. Can't wait to make sense out of all I am learning and will share anything I find beneficial to know. Bottom line so far is tovget rid of it and try to get rid of underlying factors, I.e. viruses, candida, other infections and make your body strong through good diet, fasting, cleansing and exercise regimen. Once the immune system is build back up, it can fight back on its own. So far it all makes sense.

Talk soon

Bebe

ChiSandy

Uh-oh. In my 66+ years on this earth, one of the best lessons I’ve learned is when you see something titled “The Truth About…” it’s horse hockey. Watch out for junk science.

BebeZF

chiSandy,

I know what you mean, but I am smart enough to see through it. I am watching and can't wait to see what, if anything, they are selling. BUT, knowledge is power and so far some information definitely checks out for me.

Hugs

Brbe

Falconer

ChiSandy- I'm with you about The Truth about Cancer. A homeopath I saw once recommended it to me; the founder of TTAC is a retired accountant and bodybuilder. Once I searched for their documentaries, my email inbox was flooded with a barrage of emails selling their products. Be careful BeBe. It's important to live a healthy lifestyle during and after BC treatment, but be wary of the sales pitch promoted there.

BebeZF

Hi Falcon,

Glad you shared that, yes, I don't buy easily into things, just absorbing the info.

Love the community here and how everyone looks out for one another