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2018 - February Surgery Support Group

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Fembot
Fembot Member Posts: 59

Welcome Friends,

Please leave a hello, and let us know how you're doing. We're all different, but we can help each other through a scary time.

Some of us have had treatments and surgery. Read what it was like and share your story.

-————

I had ductal carcinoma in situ (DCIS) in one breast. I've chosen mastectomy for both breasts with immediate implant reconstruction.

I had skin-sparing uni-lateral mastectomy (SP-UMX) Feb 2 w/ immediate textured anatomic highly-cohesive silicone "gummy" implant reconstruction w/o tissue expanders (TE). I'll have the same for the other breast as prevention (profyllactic).

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Comments

  • ToughCookie101
    ToughCookie101 Member Posts: 119
    edited January 2018
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    Hey! I’m 33 going for a single nipple sparing mastectomy with expander Feb 1st. Hoping to get the other side done at a later date (they don’t want to do the prophylactic at the same time). I have IDC, scans show it to be somewhere just under 2cm but growing I’m sure. 😬 My tumor is in the axillary tail so very accessible for lumpectomy, however I am opting for mastectomy to hopefully avoid radiation. Then looks like chemo for me after...

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    Hi ToughCookie101,

    I'm doing the breasts one at a time too. My surgeon says that she's seen cancer treatment delayed due to infection in the profyllactic-masectomied breast. That's probably rare, but I guess it can happen. We're doing for a different reason though, so there's less blood loss during surgery. My breasts are quite vascular. A couple good reasons to do them separately, but I still wish it was all St once.

    Are you going to have the sentinel node biopsy on the profyllactic side? I haven't decided. FYI about that choice https://pinklotus.com/powerup/breastcancer101/prophylactic-breast-dye-injection-pbdi-an-innovative-idea/

  • ToughCookie101
    ToughCookie101 Member Posts: 119
    edited January 2018
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    Hi Fembot, that is exactly what my surgeons said. They wouldn't want to see an infection or complication on the prophylactic side cause a delay in my chemo or radiation (but hoping to avoid rads, hence the mastectomy. :) ).

    I am not planning on having the sentinel node biopsy on the prophylactic side. I have had enough scans (I closing an MRI) and another biopsy on that side that I'm assuming that it is good. I don't want the added surgery and lymphdemarisk.

  • Strengthandjoy
    Strengthandjoy Member Posts: 51
    edited January 2018
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    Hello,

    I am not one to post, but this site has been helpful already- so I thought I would jump in! I’m going in on 2/15 for a double mastectomy. I have DCIS on the right side and family history of breast cancer so I just want to minimize my risk as much as possible. I am also doing full reconstruction as well. This is going to be quite a journey and I hope that we can help each other.

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    Hi Strengthandjoy,

    Welcome to the group. And sorry you're here too.

    I was lamenting to my mom yesterday that I'm not a candidate for skin & nipple-sparing, and that I'd just have 'mounds' until later nipple reconstruction and areola tats. She thought a minute, then said: "but you'll be alive." That put it in perspective for me.

    It's so important to have someone to talk to.

    If you haven't found it yet, there's a great list on this site to help prep for surgery, and when you get home: community.breastcancer.org/forum/91/topics/699896?page=34#post_5125842







  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited January 2018
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    I am in the same boat as you. I was diagnosed with a small 1 cm DCIS last week. I go for a double mastectomy with implant reconstruction Feb. 14th. At first I felt like maybe it was overkill, but now I'm confident with my decision. I was a candidate for nipple sparing but was told leaving them gives me a 1% chance of recurrence. I want all the odds in my corner so told them to take them! I'm hoping to get some genetic testing after surgery but haven't been told much about that yet. I will do anything so I never have to deal with any of this ever again. Good luck with your surgery. I am sure it will go fine. Sending prayers!

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    Hello Nursepatient35,

    I'm sorry for your bad luck, but welcome to the group.

    Wow, you got scheduled quickly. It's good not to have to wait. I was diagnosed Dec 6, and my surgery is Feb 2, which gave me lots of time for research but lots of sleepless night too. I tell myself I'm getting new boobs, and that makes me feel like I'm getting something out of it. : )

    Best wishes!


  • Lionmom2
    Lionmom2 Member Posts: 1
    edited January 2018
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    Hello everyone. I was diagnosed with triple negative the end of September and started chemo immediately. Now I'm scheduled for double mastectomy February 7th with lymph node removal.I will have tissue expanders placed during surgery. Not sure if that's such a good idea but I just want to get it over with. I'll follow with more chemo and possibly radiation.

    Good luck to everyone

  • ToughCookie101
    ToughCookie101 Member Posts: 119
    edited January 2018
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    You ladies seem to be getting surgery so fast! I have IDC and the delay because of all the testing and ro coordinate the plastic surgeon makes me nervous. My date is coming up soon though, Feb. 1st.

    Fembot, i have a friend who had a double mastectomy due to DCIS and she has her nipples tattooed and stitched on and they look darn good

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    Lionmom2, best wishes to you too. Which things are you not sure of? I'll help if I can.

    Toughcookie101, I've seen images of very realistic nip tatts, so that's comforting. What do you mean by 'stitched on'? I think I'll have nipples reconstructed, but the areola has to be a tattoo I think (?).

  • ToughCookie101
    ToughCookie101 Member Posts: 119
    edited January 2018
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    Fembot, maybe stitched on was the wrong term. My friend had a circle of her own skin stitched for the reconstruction. So they essentially gathered some skin in the middle of her boob and stitched it. Then the arealoa (and the middle part that was raised by the stitching) all tattooed. I assume this's the standard way it is done however I never really looked into nipple reconstruction

  • Strengthandjoy
    Strengthandjoy Member Posts: 51
    edited January 2018
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    I’m going to do the tattooing too. My plastic surgeon is amazing, but I am very tempted to use Vinny- he is a very talented 3D tattoo artist who now, only does nipple tattooing for reconstruction. He is based out of Boston (I think) but does travel around some.He is so talented! I’m still deciding if I will use him or not.

  • terrifiedBUTstillHOPEFUL
    terrifiedBUTstillHOPEFUL Member Posts: 15
    edited January 2018
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    Hello everyone. I'm scheduled for my bilateral mastectomy with the start of my reconstruction on 2/13/18... there are days I feel like "I got this" and then some (ok, most days) I feel like hiding somewhere no one would ever think to find me! I know I need to have his done, especially since I have tested postive for BRCA2 (and my family Hx has a long line of cancers) but, I am seriously afraid. Since the day I was told they wanted to do a double biopsy, I knew something was wrong... but I kept wishing that one day, someone will call me and tell me that they've been wrong...but I'm facing reality each day and now I'm hoping and praying that one day soon, I will receive a call where I'll be told "You are cancer free!"

    Just thinking of even the chemo port frightens me... Is anyone else feeling this way?! I try to keep my mind busy with reading books, being social, exercising... what has helped any of you in "getting prepared" for what we are all about to endure?

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    terrifiedBUTstillHOPEFUL,

    Welcome to the February group. You DO got this. You're likely stronger than you know. We'll get through it together.

    It has really helped me to keep busy, mostly with research but also with putting together an overnight bag for hospital, and shopping for post-surgery supplies.

    This made me feel in control. I ordered things from Amazon: a set of foam wedges for sleeping upright, zip-front sport bras, extra bed sheets. I got zip-front hoodies, jogging pants, oversized flannel button-down shirts and a deep double-pocket money belt for holding the drains. Also a plastic graduated cup for measuring lymph from the drains, and Corelle dishes because their super lightweight, so easy to lift.

    It makes me giddy to receive packages in the mail. ; D

    I've not been sleeping since mdx dx. So finally I got sedatives from my PS.

    Keep in touch

  • itsstillme
    itsstillme Member Posts: 48
    edited January 2018
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    I will be having a BMX with TE on February 27. I have been dealing with my diagnosis since July 2017. My first surgery, a lumpectomy, breast lift (both breasts and SNB, for IDC in my left breast, was in 8/2017. I wasn't a candidate for nipple sparing as my breasts were very saggy due to breast feeding 2 kids, so my PS suggested doing the breast lift first, giving it time to heal, then doing the BMX down the road. That's when 3 of 4 nodes came back positive. My next surgery, ALND was 9/2017, 4 more nodes were removed and all were negative. Because of node involvement I have been going thru chemo since 10/2017. My last chemo will be 2/7/2017 (Hurray!!). This all has been so difficult especially the chemo. I still need radiation after BMX. So all that being said, that is why I am having a BMX. I am will to do what ever it takes to reduce my risk even by the smallest percentage.

  • terrifiedBUTstillHOPEFUL
    terrifiedBUTstillHOPEFUL Member Posts: 15
    edited January 2018
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    Fembot,

    Is there a link to where I can get more info on preparing an overnight bag along with the supplies needed for post Sx?

    I love receiving packages, too! I've got to google the "deep double pocket money belt"... I need to get a move on because I don't have anything ready. I've heard that we'll have little arm movement after the BMX... Is this true? (BTW, I haven't been "motivated" to exercise much and I know it's recommended)

    How have the sedatives been working? It's weird, since my Dx, I have been feeling very tired and I am able to sleep but I've been having the most weirdest dreams! (Possibly due to my anxiety! LOL)

    It's so awesome how we all support one another on here and I'm thankful for that! Without BCO and this community, I would be completely lost! Fembot, when is your surgery scheduled? Yes, please let's stay in touch! We CAN do this, together!

  • OCDAmy
    OCDAmy Member Posts: 289
    edited January 2018
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    Hi all, just wanted to reach out and let you know that I found my BMX with TEs to be not as hard as I thought it would be. I was most afraid of the surgery and being under that long! This was the first time I ever had surgery and the only time other than giving birth, I had been in the hospital. I got sick from the anesthesia and they gave me a patch for behind my ear and then I felt much better. My daughter spent the night with my in the hospital and I was so glad to have her there.

    The pain was manageable with the meds for the first 5-6 days and then I switched to ibuprofen. My PS also prescribed muscle relaxers which helped too. Watch out for constipation, my visiting nurse told me to take miralax and after a few days all was better. Try to walk around as much as you can. My PS told me to "think like a T-Rex" don't put your arms higher than your elbows. So, putting things like cups and plates on the counter is helpful. Maybe get one of those grabber things if you need to pick something up off the ground, it is really hard to bend over. don't lift anything heavy. I slept in a recliner for the first few weeks. The drains are easy to strip but you will be glad when they get removed. I could shower starting 24 hours after surgery, just couldn't wash my hair so you will need some help there. I don't think you need to pack much for the hospital stay. I was there for one night and I just had my phone, some hand lotion, lip balm, brush. They can give you a tooth brush or other items.

    I know this is scary but before you know it, you will be on the other side. If you have any questions, ask away! will be thinking about all of you.

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    @ itsstillme

    Thanks for joining this chat. It's fantastic that you're almost finished chemo. Congrats on that milestone! So after all this, are they saving the nipples? That was the point of the lift if I understand correctly?

    @ terrifiedBUTstillHOPEFUL

    The prep list is here. Start at the top of that page. I'm glad you can sleep. Last night the sleeping pill wasn't enough. Speaking of exercise, I'm 30 lbs overweight and in the worse shape of my life, due mainly to debilitating chronic fatigue. I'm worried about what that will do to my recovery. My 1st surgery is Feb 2. Have you started chemo?

    @ OCDAmy

    Thanks so much for sharing! I expect to be quite nauseated from the anaesthesia, since I have a problem with chronic nausea from migraine. It's sweet that you're daughter supported you in hospital. The doc said I may be released from hospital same day.

    Yeah it's scary as heck. I feel like I'm holding my breath-waiting to exhale.Thanks for the kind words, I wish you the best too!

  • itsstillme
    itsstillme Member Posts: 48
    edited January 2018
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    Fembot - Yes, after my breast lift, my nipples are now in the proper place and have healed. So I will be having a nipple sparing BMX.

    OCDAmy - Glad to hear your experience was not as bad as expected.How are you healing? Just wondering if chemo has any lingering effects on your ability to heal.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited January 2018
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    Itsstillme, I had four months of estrogen therapy to try and shrink my tumor. It didn't shrink it much so I had surgery and then started chemo and then rads. I tried as hard as I could to get in better shape before suegery, walking every day to make recovery easier. I'm happy to say I finished rads a week ago and feel pretty good. Have to wait at least 4-5months for my exchange surgery so I'll be living with the expanders for nearly a year. Skin and TEs held up nicely through rads

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited January 2018
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    I am having a bilateral mastectomy with reconstruction using TE'S over the pec on 2/14. I feel like I mostly got over the initial breast cancer Dx depression but I still think about surgery and how it will effect me and my family constantly. The waiting to get this surgery over with is the worst. I'm planning on taking 6 weeks off from work. I am a surgery/outpatient nurse so if anything, this experience will make me a better nurse right? I'm just hoping and praying for no complications, infections, etc. I pray for everyone going through this. It is such a crappy place to be but we will all come out as better people in the end.

  • itsstillme
    itsstillme Member Posts: 48
    edited January 2018
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    OCDAmy -glad to hear that your expanders held up well thru rads. How many rounds did you have? Does node involvement mean more rounds or just a larger radiated area? Were your TEs completely filled by the time you had rads?

    Nursepatient -Hello. I was diagnosed in July and for me the depression and fear comes and goes. The enormity of what has happened and what is to come can be overwhelming. I have found these boards to be extremely helpful and comforting.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited January 2018
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    ItsStillme, I had 28 rounds of rads. Your TEs can't be expanded during rads. Seems like the dosage is different depending on your facility's equipment, node involvement and lumpectomy vs Mastectomy. Many of those with LX had boosts at the end targeting where the tumor had been but with MX I don't believe they do that. Mine was done with IMRT which is more targeted and helps to protect heart and lungs (my tumor was on left). I would ask what type of technology they use. I did have node involvement so I had rads under arm and in arm pit plus along collar bone. I was so worried about damage to TEs and relieved that did not happen! Best of luck to you

  • Fembot
    Fembot Member Posts: 59
    edited January 2018
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    Nursepatient35,

    I agree with you that waiting is really hard, whether for surgery or pathology results or healing. I'm just exhausted. My 1st surgery is Friday and I'm going to a Pre-Opp meeting with doc and anaesthetist tomorrow morning. It's going to really sink in then that this is happening. It's really smart of you to take time off as you are, and hopefully your family will help out.

    Hugs,

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited January 2018
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    Blerg .....

    I'm really here. And while I know this support is going to be a good thing it just up'd the "this is really happening" level.

    A leaky left boob over the summer is where this started for me. My son had stopped nursing many months prior, but chalked it up to post baby/hormonal stuff. It persisted and in mid November saw my primary dr about it. I don't know how quickly things normally progress but feel like I hit a scheduling jackpot, mammograms, ultrasounds and surgerical biopsy all done before Christmas. I knew when the ultrasound was done that bad news was coming. I was okay with that. When my surgeon called to let me know the samples were getting a better looking at I was so mad that I had to wait. I was just ready for knowing what it was and what the plan to get rid of it would be.

    DCIS. And after the MRI enough of it to warrant a mastectomy. I'm opting to do the right side as well. With straight to implant reconstruction (and some fat grafting later). As long as nothing else crazy gets discovered I'll get to skip any radiation or chemo. BRCA was negative, which surprised me as I've learned we have family history of breast and ovarian cancer. When everyone is telling me how much this sucks, and it does, I keep reminding myself that really I’m lucky.

    Before my MRI and thinking we'd just do a lumpectomy I had a date set for Jan 29th, but since the plan changed and coordinating with the plastic surgeon needed to happen I'll be going in on Feb 13th. Even though I knew it was tentative, I had started making my plans for the first date. Fingers crossed these next 2 weeks fly by!

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited January 2018
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    Blerg .....

    I'm really here. And while I know this support is going to be a good thing it just up'd the "this is really happening" level.

    A leaky left boob over the summer is where this started for me. My son had stopped nursing many months prior, but chalked it up to post baby/hormonal stuff. It persisted and in mid November saw my primary dr about it. I don't know how quickly things normally progress but feel like I hit a scheduling jackpot, mammograms, ultrasounds and surgerical biopsy all done before Christmas. I knew when the ultrasound was done that bad news was coming. I was okay with that. When my surgeon called to let me know the samples were getting a better looking at I was so mad that I had to wait. I was just ready for knowing what it was and what the plan to get rid of it would be.

    DCIS. And after the MRI enough of it to warrant a mastectomy. I'm opting to do the right side as well. With straight to implant reconstruction (and some fat grafting later). As long as nothing else crazy gets discovered I'll get to skip any radiation or chemo. BRCA was negative, which surprised me as I've learned we have family history of breast and ovarian cancer. When everyone is telling me how much this sucks, and it does, I keep reminding myself that really I’m lucky.

    Before my MRI and thinking we'd just do a lumpectomy I had a date set for Jan 29th, but since the plan changed and coordinating with the plastic surgeon needed to happen I'll be going in on Feb 13th. Even though I knew it was tentative, I had started making my plans for the first date. Fingers crossed these next 2 weeks fly by!

  • MayDayMelK
    MayDayMelK Member Posts: 25
    edited January 2018
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    Mountainmama- That's similar to what I had that made me go in, except I knew that the leaky boob wasn't related to BF'ing because I quit that right at 7 years ago to have a ooph/hysterectomy lol. I had my stereotactic biopsy last week and today was told that the results were being looked at by another pathologist so I'm (im)patiently waiting for Friday because I should have everything back then at latest. We travel out of state for my daughter to have surgery and testing done all next week so here's hoping this is good news lol.
    Thank you for sharing your experience thus far. It helps me to gain as much insight about the possibilities as I can.




  • UniversityArizonaBotanicsStudy
    edited January 2018
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    Hello all,

    Thank you all for being so willing to share your stories about what you are going through.

    I am a student at the University of Arizona and we are conducting research on what patients with Breast Cancer or patients who have battled breast cancer are currently taking in terms of over-the-counter supplements (OTC).

    This data is being collected in the hopes that with more research on what patients are taking, no matter what course of treatment, we will be able to direct future research in the area of OTC supplements.

    is.gd/breastcancersupplements

    Please consider taking the ~5 minute, anonymous, online survey.


  • ToughCookie101
    ToughCookie101 Member Posts: 119
    edited January 2018
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    I think I have everything ready for my surgery scheduled for bright and early on Feb 1st! I’m working right up until Wednesday to keep myself occupied. Looking forward to being on the mend and getting my lymph node status and full pathology on Feb 22nd.

  • itsstillme
    itsstillme Member Posts: 48
    edited January 2018
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    tough-cookie best of luck on Thursday, it’s wise to keep busy in the mean time. Feb 22 seems like a long time to wait for results. All this waiting is so difficult