Lumpectomy w/wire localization this week, no one to talk to

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Ellyn27
Ellyn27 Member Posts: 147

I'm so happy to have found this site. I was recently diagnosed w/DCIS. My lumpectomy is this week. My husband has gone w/me to all my appointments so he's aware of everything but he doesn't like to talk about medical issues and I think it's because he worries. I told my kids I'm having a "procedure" because I don't want to worry them. I don't want to tell others because I don't want to worry anyone. Since it's DCIS Stage 0, I feel like I shouldn't be worried or talking about it. But I'm stressing right now. I'm to have a wire localization procedure prior to the lumpectomy, then radiation after I heal from surgery. I've had family members and friends pass from breast cancer. I feel like even if all goes well, I'm not really a "survivor" because it was DCIS.  I feel like I'm having a "whoa is me" moment. Thanks for listening.


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Comments

  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    Oh Ellyn, I am glad you found us, but sorry for the reason you're here. I can understand your feelings, as many of us here in dcis-land have experienced similar. There is actually a thread "cancer/not cancer what do you say to people" (here: https://community.breastcancer.org/forum/68/topics/853479?page=2#idx_44) that goes through other women's thoughts/experiences.

    You've been through the same diagnostic process as anyone else diagnosed with bc, you're going through surgery, radiation and potentially hormone therapy (if you're ER+). The process alone has made a difference in how you view the world, your body, your health, and potentially other things that are more specific to you. Please don't minimize the impact that having ductal carcinoma in situ has had on you. I would recommend that you join a group or get some individual support as you sort out your feelings and move forward. People who love us worry about us. It's part of the deal. Now, I can see wanting your kids to have news that is age appropriate for them, and it's always your decision who to tell (some women have commented that specific friends or family aren't really supportive or dont' do medical stuff well). But please do find a support system that you can share your feelings with. Being worried is normal and natural, and not talking about it doesn't really make it go away.

    Sending you warm thoughts and gentle ((hugs))

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Thank you so very much MTWoman. I will definitely go there and read that. First surgeon had me thinking mastectomy and second surgeon said that was too aggressive. I'm going with the lumpectomy/radiation/tamoxifin route and hoping I made the right decision. Thank you again so very much. Going now to buy a front-closure bra because I'm reading here (somewhere) I'll need one!!

  • aquilegia
    aquilegia Member Posts: 83
    edited October 2017

    Ellyn27 It's quite OK to not think of yourself as a survivor. Most people with DCIS don't get invasive cancer, even more of those who get treated with radiation and tamoxifen don't get invasive cancer, and even if you eventually did get invasive cancer, survival rates are going up all the time. Even after three lumpectomies and eventually a mastectomy for DCIS, I don't consider myself a breast cancer survivor. That's my way of not dwelling on it.

    The wire localization procedure was definitely the worst part of the lumpectomy for me - think of having your breast compressed like in a mammogram, but having to stay in that position for minutes while they insert fine needles and take xrays. My advice - take several tylenols beforehand, don't look at the needles while they are going in (I looked, passed out, and landed on the floor), and if you are prone to fainting, ask for a sedative ahead of time. In contrast, the lumpectomy was no big deal for me once I figured out which general anesthetics make me sick. Anti-nausea drugs are wonderful.

    I don't know why you'd need a front-close bra. Unless the surgeon is taking a very big area of tissue out, they'll just bandage the incision up and send you on your way.

  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    Welcome, Ellyn27. You are a Cancer Survivor.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    aquilegia - It's so nice to share and learn from others that are/were in the same situation. I also tend to pass out so when I had my needle biopsy they gave me xanax. I didn't feel a thing with that and was very relaxed so I will definitely have them give me something for the lumpectomy.  I'm waiting to get my phone call from the surgical team about the time I'm to arrive. I will mention the passing out thing and ask about what to wear. Paperwork they gave me in advance said it's best to wear a sports bra or one that hooks in the front. I can't imagine lifting my arms after surgery and pulling down a sports bra. Plus, I read here a post talking about things to bring and do prior to surgery and a front hook bra was on the list. I'm a bit large on top and hate going bra-less, mainly because I don't like to sweat underneath. On that same post some women commented that they wore those bras to radiation. I don't think they'll be taking a big area out. I bought one yesterday but will hold onto the receipt if I don't need it. I was surprised to see in your stats (or whatever they call them here) that you had several lumpectomies and a mastectomy. That's a bit worrisome to me. I am thinking I would do this once and be done. I know you may not think of yourself as a survivor, but I think you are a survivor and also a hero for sharing your thoughts here on this site. Thank you for sharing.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Icietla - Thank you for your response. I think everyone on this forum has gone thru alot ... stress, pain, worry, surgeries, radiation, chemo, medication, whatever. I think I'm a bit nervous and stressing right now because my first surgery for this is this week. I'm finding the link above that MTwoman posted very helpful. It's odd because I did tell someone at work (because I had to take a few days off for dr appts so I told her) and she's been commenting to me about how calm I am about all of this. Well, I was calm then. Now because it's almost go-time, I'm beginning to stress!! Thank you again.

  • kowgiirl_up
    kowgiirl_up Member Posts: 7
    edited October 2017

    Hi Ellyn27, I'm new here but I saw your post and thought I would join :)

    I do want to say though, that I had a lumpectomy just last week and I was scared sh!tle$$. I kept it well hid so I know where you are coming from. I had the wire localization prior to the surgery (DCIS). Honestly for me, the surgery part is the easiest because you get to sleep for a change. All the biopsy's were zero fun and I would have much rathered cleaning the toilet with a toothbrush blindfolded than to do them. I'm so glad they are over (fingers crossed) When I woke up from surgery they had put me in a surgical bra and I thought that must be routine. Right now I'm wearing my normal bras but my incision is pretty small I think, haven't seen it yet, so I'm super lucky there. Actually, I've been pretty darn lucky all around.

    IMO you are a survivor (or soon will be after the blasted "thing" is removed). I was referred to as a "survivor" just this week by my cancer/blood doctor so if she thinks so then it's true in my book.


    Just take a deep breath, you will be ok. I'm wishing you a nice sleep during your surgery!

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    Thank you for your kind words and support, Kowgiirl_up! And welcome to BCO!

    The Mods

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Thank you so much kowgiirl_up. Just had my lumpectomy yesterday. Left my house at 11:00 a.m. and didn't get home until 8 p.m. so it was a long day. And, since I couldn't eat anything from the night before, I was pretty hungry. The wire localization went OK. It's like having a million mammograms though because I was going in and out of that thing so many times. The wire part didn't hurt and I made sure everyone in the room talked to me about other things while it was going on. Like you said, the surgery was the easy part. I'm still a bit woosy from the meds and was out cold sleeping until others in the house had to get up this morning. So now I'm up. I have some gauze over the surgical area and then have two of these stretchy bands they wrapped around me. Looks like a tube top haha. Not sure how much, if any, pain I'll have later. I'm looking at this as a time to get healthy. I cooked a few meals the day before surgery so I just have to keep it up. Will you be having radiation? About when will you start that? I still need to decide where I'll be doing that. Sorry I'm all over the place blabbing away .. probably the meds. Have a great day.

  • kowgiirl_up
    kowgiirl_up Member Posts: 7
    edited October 2017

    Ellyn27, I don't know if it's appropriate for me to tell you what to do, so I will advise :-) be sure to use those ice packs like they tell you. It will help so much with pain, swelling and bruising. I had a script for Hydrocodone (sp?) that I didn't use although, I did have it filled and ready to go. The wire loc was very painful for me. Not the actual wire placement but the injection of the lidocaine~ that HURT. Some gals it doesn't bother. I'm so glad I'm past that.

    I'm on the same page as you~ time to get off my duff and take care of myself. I also cooked a head so I didn't have to eat pancakes for most meals since the hubby was doing the cooking (bless his heart).

    I have to have a re-entry (I think it's called) since not all the cancer was removed from what the pathology report says. The surgeon told me yestereday that she had to remove more than what the Mammo showed~ quite a bit more. BUT I still have both my "girls" and that was the first thing I checked when I woke up. Did you check??

    The surgery happens next week. The day before I see the radiation doctor. I saw the radiation doctor once a couple of weeks back but my surgeon wants a re-evaluation. I'm guessing that is normal. So, yes I'm going to do radiation. I elected for the whole breast. I waffled back and forth between the seeding which is about 1 week and the whole breast which is 4 weeks= 5 days a week. I just couldn't bring myself to have a tube and the hoopla along with the 2x's a day trip to downtown to have it done. I'm kinda over all those darn needles. It's a big decision. I had hoped to start the radiation later this month but the re-entry is going to push that back. I'm not happy about it but it is what it is. I'll know more next week when I talk to the rad doctor. I do have to say that everyone and I mean everyone, that I have dealt with during this whole ruckus has been super.

    Have you meet with a radiation doctor yet to talk about options?

    I'm glad you had a nice sleep. I'm looking forward to my nap next week :-)

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    kowgiirl_up - I got a script for Hydrocodone as well. They gave me 2 before leaving the hospital and I didn't feel any different. But, in the middle of the night I couldn't sleep so I took one and it wiped me out cold. I don't like taking this stuff so I will keep up with the ice packs they gave me and if needed they said I could use Ibuprofen. I have not met with anyone in radiology yet. I went to one hospital in the city for the surgery (he was my second opinion and I felt more comfortable w/him) but I will be going to a different hospital, more local, for the radiation. I'm not even sure what type of radiation person to contact (i.e. radiologist? radiation oncologist?) I have my followup with the surgeon in a week and a half and will ask. I'm sure they will help me with that. They may call me today to see how I'm doing and I may ask today, depending on who calls me. I don't know anything about seeding or really anything about the radiation process ... yet. Sorry to hear you have to go thru a reentry process. I'm not sure how I would handle that. At that point I'm afraid  may say "just take them both off"!!  I did not check if I had both of the girls haha. I was told I was only having work done on the left so I didn't even think to check. I still don't know what it looks like because I'm all bandaged up.  I'm feeling better emotionally now that the lumpectomy is over and from sharing here on this site. I'm going to go for a walk outside now and get some fresh air. I can feel my rear end expanding as we speak :)

  • kowgiirl_up
    kowgiirl_up Member Posts: 7
    edited October 2017

    I did Tylenol extra strength b/c of constipation issues ~ ugh. For me it worked well and I made sure not to take too many. I'm lucky I could get away with that.


    For ice packs I used frozen peas and also a zip lock bag filled with alcohol and water then frozen. Both worked pretty good. I would wrap either in a thin clean dish towel, put it between my armpit and right breast since my incision is on the right side or my right breast, then I used the little pillow they gave me at the hospital to keep my arm from pressing on the ice pack.


    It's Radiation Oncologist for me Ellyn27. I'm betting you will be hooked up with one when you do you post-op check up.

    I'm not freaked about the re entry. I was told it might be a possibility. What can you do (meaning me)? I'm not letting my head get all goofy ;-) I did have to stop some of my friends from telling me horror stories about someone they knew that knew someone else who had this or that during their breast cancer. I need positive fibes and low stress so I can heal and keep pushing forward.


    Are you supposed to keep the bandages on for so many hours before you can shower? I think it was no shower for me for at least 36 hours and I had to leave the "bra from hell" on for 3-5 days 24 hours a day. Now I'm supposed to wear a bra all day for a month. When I took the BRH off and took a shower, I just stretched out on my back afterward on the bed for a bit because it felt so good to have nothing on. << That was the best moment so far ~ relief :-)


    Enjoy your walk and take in lots of that fresh air.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Kowgiirl_up You have the right attitude by staying positive. The few people I told were surprised how calm I was. I didn't stress until just before the surgery. I have to wait a few days also to shower and even then they said to put my back to it, not wash it, just let soapy water run down it. Taking my walk yesterday was a big mistake. I got a little light headed and was by myself. When I got home I couldn't remember the code to our garage door opener and called my husband. I think he freaked a bit.

    I did remove the tube top thing they had around me. It was wrapped around me twice and I had to keep pulling it up, it was digging into me. I put on a sports bra I had and it felt so much better. I also noticed they put this tape on me and the one end was pulling/ripping my skin. So I pulled it back a bit and have this big raised red mark from that, but again it feels so much better. I'm thinking all my pain was from all these darn bandages. 

    I slept better last night. I have no idea how big the area is that they opened or how many stitches I have, but I'm not going to worry about it. It is what it is. I may shower later. I can see some of the iodine they left on my skin and just want to freshen up. I just don't want to get the bandages still on me all wet. Maybe a sponge bath.

    Have a great weekend.

  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    I'm two and a half weeks post wire localization lumpectomy. Interesting that most of my remaining discomfort is stemming from the site where the wire was inserted. I still have a couple of black bruises at the site and a painful "knot" under the skin on the side of my breast. I would have thought that the surgeons incision around my nipple would be the source of discomfort - although I must say that I also have numbness, but no bruising left at the incision site. Has anyone else experienced this?

    Thanks for any insight.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    It's only been one week since my lumpectomy. I still have steri strips on so I can't see the incision or stitches yet. But, I have this strange weird orangeish color around the nipple area. I have showered so I know it's not left-over iodine from surgery. I haven't turned black and blue, just orange!! Around the incision area it still feels swollen and hard in areas. I am sore and going braless is a no-no for me ... very painful. I can see something very dark under the steri strips, but I just assumed it's the stitches or dried blood. I have my followup early next week and am supposed to get another mammogram. I can't even imagine having a mammogram at this point in time. That's going to be very painful.

  • octogirl
    octogirl Member Posts: 2,804
    edited October 2017

    Hi Ellyn: I am glad you found these boards....just wanted to let you know that there is also a thread specifically addressing all of the issues/concerns/questions for those who have had a lumpectomy. It is a very supportive group. Always someone to talk to there! Here is the link:

    https://community.breastcancer.org/forum/91/topics...

    Take care;

    Octogirl

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    Thank you octogirl. I will definitely go check that out!!

  • leaf
    leaf Member Posts: 8,188
    edited October 2017

    tlfrank: I don't have DCIS, but I had a horrible bracket insertion before excision. The excision itself wasn't bad because an anesthesiologist got involved. By a few days later, my breast was all black and blue, especially at the bottom. (The incision was at the top/side.) I had hematomas, so I'm sure the blood drained to the bottom of my breast. The breast turned all sorts of lovely autumnal colors (blue, green, yellow) for months before they went away. It really takes time for the hemoglobin (the part of blood that contains iron) to get re-absorbed into the body. It looked horrible, but luckily I've never been a stripper. after 10 months or so, you couldn't really tell where the excision was. (I didn't have radiation though - because I don't have DCIS - so I don't know if that could/would slow healing.)

    Best wishes.

  • tlfrank
    tlfrank Member Posts: 199
    edited October 2017

    Thank you for sharing that leaf - and luckily like you, I've never been a stripper either, but may take it up to pay these medical bills - LOL. I'm still waiting on genetics to help plan the next step - as I have a strong history of cancer - (colon, not breast). So, mastectomy is on the table along with radiation. However, the radiation oncologist said that the treatments wouldn't affect it, so fingers crossed. She suggested massage and heat to speed up the process. I'm finding the waiting excruciating - not sleeping well and when I do the dreams are terrible.

  • kowgiirl_up
    kowgiirl_up Member Posts: 7
    edited October 2017

    QUOTE: tlfrank: I've never been a stripper either, but may take it up to pay these medical bills - LOL

    I agree!! I might resort to having my sweet hubby to do the same to get them paid. Thank you tlfrank for the laugh today, it felt so good

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited October 2017

    HAHA they'd probably pay me to NOT take my clothes off!!! I haven't seen the medical bills yet but I'm sure I will not be happy when I do. I have my post-lumpectomy followup next week with surgeon in the city. I also made an appt to see RO at a hospital closer to home. That appt isn't until 11/14 but that was the earliest they could get me in. Going to different hospitals wasn't ideal but I wanted a surgeon that was better known for doing breast surgery. Have a great weekend everyone.

  • Liz1985
    Liz1985 Member Posts: 23
    edited November 2017

    Hi Ellyn. You mentioned your lumpectomy and Im getting ready for one soon. I have heard about the Sentinel Node Biopsy where they have to put the a couple of shots of dye near the nipple area so they can take some lymph nodes out for biopsy while you are under. Did you have this done? If so, was it very painful or did they give you something prior to them doing that. I understand you get it done while you are awake because it takes at least an hour for the dye to work its way through the breast area to get to the lymph nodes. Worried sick about this procedure!

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited November 2017

    Hi Liz1985 - I did not have a Sentinel Node Biopsy done. Hopefully someone else here can help and answer that for you. I did have a wire localization procedure done just prior to the lumpectomy. They couldn't give me any pain meds during that but they do numb it a bit. For that you pretty much are having a mammogram and at the same time they insert a wire into the breast going to the area where the DCIS is. This allows the surgeon to follow the wire and know where they need to go during the lumpectomy. All of that went great for me. I think I was more worried and stressed about the procedure than the actual procedure. I have since had my post-surgery followup and am meeting with the med oncologist tomorrow and the rad. oncologist next week for next steps. Good luck to you. Praying for good results.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    Liz, I had SNB and it was a piece of cake. They took me to nuclear medicine (the dye is radioactive so it can be traced) and asked me to lay down on a table. They injected the dye and I lay there (and listened to music that I brought with me for just such an occasion). They took images every 10 minutes or so until they had the sentinel nodes all mapped out and then sent me on to surgery. It wasn't even uncomfortable. You got this!

  • hikertexas
    hikertexas Member Posts: 2
    edited November 2017

    Support, spiritual/mental/physical, is essential from this point onward. It doesn't matter at what stage you dwell. It becomes all so very REAL and heavy.

    The power of thinking and living positively has helped me along with sharing my situation. I am selective, but I do share because I think it helps others to know there is so much out there that people deal with every day. Go with your gut and share with whom and when ever you feel you need it. THIS IS NOW ALL ABOUT YOU. I come from a caregiver role in life, both personally as a mother/spouse and professionally as a retired primary teacher. I've now put ME first and although I'm still dealing with the selfishness that I own, I'm getting what I need and if not now, when?

    Yoga, gentle yoga with others, has been essential. I also dropped all duties and began adding them back slowly but surely. Dust will wait for you. Grandkids, not so much.

    Here's to your road ahead. You are not alone, even if you feel that way from time to time. Call or talk and let someone in. You DESERVE it.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Liz, I had the wire insertion, and dye injection for the sentinel node biopsy, just before my lumpectomy on October 10. Like others have said it was a LONG day at the hospital but everyone was so lovely it was about as stress-free as possible. Yep, every aspect hurt some but not too bad. I found the key was to engage the nurses in conversation to divert my attention and they all let me yak! Best of luck to you.

  • GKL
    GKL Member Posts: 15
    edited April 2018

    Ellyn27

    I know how you feel. I had stage zero DCIS. The tumor was 3mm by 4mm when I got my biopsy. When they did the surgery there was a 2mm section left. I was very fortunate to have gone to a hospital with state of the art equipment and procedures. I had a Savi Scout reflector implanted the week before. It replaces the wire localization and takes maybe 45 - 60 minutes including check . A small device about the size of a cooked grain of race with 2 tiny antenna is inplanted and if done by a Dr. as good as mine it is like having a needle core biopsy. The surgeon then turns on a device in the OR and the reflector activates showing where the tumor is. I had a good surgeon who got everything first try and when I left the hospital, I had a 3 inch incision covered with tissue glue. Took on pain pill that day and went home. It was followed by 4 weeks of radiation and the worse part of that was the fatigue after the 1st 2 weeks.

    Now I'm on anastrozole and finding out this is the hard part. I hope you end up with a kind, compassionate MO because that will make this part bearable. I've been told not to feel guilty by my nurse navigator but sometimes medical professionals can be cutting with their remarks. We'll most probably be here for the next ten years so we need to stand tall and tell people who trivialize what we've been through that the second worse thing is bad attitudes LOL


  • Sitti
    Sitti Member Posts: 230
    edited December 2017

    Roosterlady, I had a Savi Scout too. I haven't found many people that have had that procedure but was glad it was available. My BS is/or was the only surgeon in area that was actually doing it. Glad you are doing well. Take care.

  • Marilynperkins787
    Marilynperkins787 Member Posts: 1
    edited February 2018

    I just had a lumpectomy on the 24th of Jan. Diagnosed with invasive ductal carcinoma stage two December 7 2017. I had wire localization done absolutely no pain at time of procedure. Lumpectomy went well lymph node was clean so as of now just to receive radiation treatments. Unfortunately developed large hematoma at surgery site. Very tender so radiation willprobably be postponed. Using heat but does not seem to be helping.

  • Ellyn27
    Ellyn27 Member Posts: 147
    edited February 2018

    Roosterlady - Your diagnosis and followup sound like mine. DCIS, lumpectomy, radiation (finished 12/23) and now on anastrozole. So far the only SE has been some "warm" flashes and not being able to fall asleep easily and stay asleep. I have my first blood work and followup with my MO next week to see if the meds are working. New attitude this year for me. It's the year of ME!!! I have a new lease on life and I sure hope it sticks with me forever. I started eating better and exercising. They say a SE of the anastrozole is weight gain and sore muscles/joints. Well, I've not had either and I think it's due to my new. healthier self. A positive attitude is key.

    Welcome Marilynperk - Your diagnosis and followup sound like mine as well. I did not develop a hematoma so I'm no help to you there. Prior to starting RADs I went and bought a lottery ticket for each day. Just something to make it fun. I never buy them so had to take my son with to help haha. You get used to going and making that appt part of your life. On my last day I got a certificate, hugged all the technicians, and when I got to my car I cried my eyes out. No clue why. It was just very emotional for me. Stay positive and take care of yourself :)

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