Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

September 2019 surgery support group

14567810»

Comments

  • G1973
    G1973 Member Posts: 49

    cathy67- I am there with you. I had my dissection this week and now we are on the waiting game. Thanks to all for helping me during my freak out time. Sometimes it just takes longer to process. Love to all

  • cathy67
    cathy67 Member Posts: 411

    HopeWins,

    Thanks for the explanation.

    I don't have SNB before the surgery, and doctor checked my armpit lymph nodes.

    How about armpit lymph nodes dissection? My friend said, no much trouble for her. I am not sure, if dissection is a replacement to chemo.

    I am thinking to be referred to another medical oncology, for second opinion.

  • cathy67
    cathy67 Member Posts: 411

    G1973,

    Thanks! How is your dissection, is it terrible?

    And how is your chemo ACT, how many doses?

    I just wonder which one is better, if oncology put option for me. It seems, we patients must learn a lot, treatment is always option.

  • chaclarey
    chaclarey Member Posts: 62

    Hi cathy67,

    Sorry to hear you disappointing news. I hope you get your options soon so you can move forward. Please keep us updated if you want to. Your words really made a difference to me when I was feeling very low.

  • G1973
    G1973 Member Posts: 49

    Cathy 67- I won’t lie the chemo was brutal at some point. The AC really made me nauseous and tired. My horrible days were usually day 3 to 5. The Taxol really was not bad at all. I had some bone pain on days 3 to 5 but other than that the only other side effect was my nails aren’t looking so pretty. The chemo did shrink my tumor from almost 7 inches down to 2 inches overall. Definitely worth doing the chemo to shrink the tumor and also destroyed any free-floating cells. My lymph node also went from 1.5 cm to not noticeable on an MRI. That brings us to today after surgery my lymph node did test positive along with a sentinel node. Because those two out of three were positive I have the axillary node dissection.

    My chemo was dose dense or 4AC and 4 taxol every other week. At this point my plan is to have my plastic surgeon continue with my expanders and then radiation afterwards. I’m sure I will also go on a oral chemo pill to clean up anything else. Still waiting for my pathology report from the dissection to confirm.


    I’m sure I will also go on a oral chemo pill to clean up anything else. Still waiting for my pathology report from the dissection to confirm.


    I hope this helps you guys, love to all❤️❤️

  • cathy67
    cathy67 Member Posts: 411

    G1973,

    Thanks for the information, best wishes for your upcoming report.


  • deweygirl19
    deweygirl19 Member Posts: 21

    3 days post op today, feeling pretty good. Having pain but it’s not as bad as I thought it would be. I had oncoplastic lumpectomy, I look like I have Frankenstein boobs! Just in time for Halloween. It’s pretty brutal looking right now, hoping for nice healing. Get my drains out tomorrow, that will be something to celebrate! My surgeon called with good news, clear margins and negative lymph nodes! Now we are just going to wait for the Oncotype resul

  • HopeWins
    HopeWins Member Posts: 81

    congrats dewygirl! Frankenboobs is the new black, lol! I'm right there with you!

  • deweygirl19
    deweygirl19 Member Posts: 21

    does any one else have toddlers? I'm having such a hard time not being able to cuddle with my 2 year old daughter. Before surgery I was the one she always wanted and now she can't even sit in my lap without hurting me, she's just so active and wild. I miss putting her to bed, she doesn't even ask for me anymore and it's only been 5 days. This is so hard for me trying to balance being a mom and not popping my stitches.

  • G1973
    G1973 Member Posts: 49

    good morning everyone- I took this weekend off. We went trail riding on our UTV with friends. No cell service or internet, it was wonderful!

    Friday my BS called with pathology and boy am I glad we did the dissection. I had 3 more nodes that tested positive. My official count is 5/13 but they are all out now! We are meeting today to take my last drain out and talk about PT/OT and lymphodema specialist.

    Friday I had my first fill with my plastic surgeon. That was interesting, so wierd that I can not feel it but happy I cant😁

    Love to you all

  • cathy67
    cathy67 Member Posts: 411

    G1973,

    Hugs!! I am waiting for my appointment with oncologist. I also spent weekends with my daughter and friends, now Monday again, what news will this week bring me?? I am so scared of bone scan, surgeon did not order for me prior to surgery, cause my armpit lymph nodes are negative on ultrasound and clinical checkup, I hope I had already done it before surgery, at least I was not that scared at that time.

    Wish you get some good news from your appointment today.


  • curemom
    curemom Member Posts: 5

    Hello,

    My Mom (69 years old) has IDC and was Dx in April 2019, she is triple positive, went through 5 rounds of TCHP and just had mastectomy 9/26. She's continuing on Herceptin until we think May 2020. We found out last week that her pathology report showed a positive sentinel node with 7mm cancer that her surgeon removed. I'm writing to see thoughts/advice on next steps. Her Surgeon told me when I continued to ask her if she felt there were any other nodes involved, "I got everything out I needed to get out and didn't see anything firm or suspicious in the axilla area" She said she was not going to go back in and do an ALND. I then spoke to my Mom's MO on Friday who also said that they no longer do ALND and was quit firm with this answer. They've both said the'll review her case at the next tumor board this month and that radiation is an option. She does have COPD (but thank goodness she quit smoking when she was Dx) so part of the reason she chose mastectomy vs lumpectomy was to hopefully avoid radiation with her lungs being compromised some. Now here she is with terrible news and radiation is back on the table. I've been helping advocate, research and guide my mom through this daunting, overwhelming and depressing process while trying to stay positive and strong for her. I don't like to worry her anymore than the worry she already has but have been researching and not sure if we should push her Doctors more, get another opinion or stick where we are. My Mom is my world and all I want is the best for her to beat this while not hurting her more in the process. I just wanted to reach out to you all amazingly strong and brave women to see if anyone has any advice.

    Prayers, healing and strength to you all.

    Thank you!

  • cathy67
    cathy67 Member Posts: 411

    Hi curemom,

    My surgeon removed one sentinel node, and it is positive with 3 mm deposit, under 2mm is considered as micro metastasis. And my understanding, sentinel node biopsy is to test whether sentinel nodes are positive or not, so only remove sentinel node, and every body has different numbers, 1 to 5. Right now, ALND is not standard procedure, for positive sentinel node case, radiotherapy is better than ALND. Of course, you may further discuss with doctor.

    And, this is September surgery group, I think you'd better open a post with subject, then someone with similar experience will see this.

  • chaclarey
    chaclarey Member Posts: 62

    Hello Septembers,

    I had my follow up appt and pathology report.

    Invasive ductal ca grade 2/3 2.1 cm pt2Nx

    Er/prpositive from initial biopsy her 2 neu negative

    Tumor size 21mmx x 16mmx 15mm, miotic score ; LVI present

    They were not able to find lymph nodes in my specimen after sentinel node biopsy. The radioactive tissue only contained breast tissue, so I will have another surgery on October 23rd to harvest and test lymph nodes.

    I don't know what this means regarding future treatments, but I guess I will have to wait (my new dirty four letter word)

    I hope all you September surgeries are healing well.

  • Lucy55
    Lucy55 Member Posts: 2,703

    Cha...so sorry you have to go back for more surgery to get the nodes . You're not wrong ..WAIT certainly is a dirty word ! It's all about "hurry up and then wait ".☹️


  • purple-flower
    purple-flower Member Posts: 74

    Hey September ladies!

    Just checking in to say hi!! How is everyone doing??

    I'm still in tissue expander *hell* here - ok, I mean not totally bad, it's livable, but I'm generally sore and uncomfortable. I can sleep somewhat on my side, but not well and not comfortable. I've had an ongoing issue where fluid is building up in breast left side outside of tissue expander under the skin. PS not sure why but doesn't seem too concerned and keeps sucking it out. She said it seems like the alloderm on outer ridge of that side hasn't "taken" yet - I guess meaning w/scar tissue around it. The right side seems ok. . She said still time to heal - but that makes me worried as I really want all the next steps to go well and be done. I"m also filled a bit more than I would like so feels strange, not me, and sore so that's a bummer. I think I am going to ask for some saline to be taken out.

    I do still wonder how I would feel if had the DIEP surgery. sigh. Not super excited about the implants to come. But that said, I'm up and about, working, drviving, etc. so that's good.

    Anyway, just checking in to say hi and wish you well. It's really quite a scene here in California - a huge fire/smoke mess and it's very sad and scary. We still have power in my house, so we feel fortunate.

    Purple flower

  • G1973
    G1973 Member Posts: 49

    hi purple-flower. Yes I am in expander hell and feel your pain. I go in Friday for another fill. He has been pretty aggressive with them so I can get in for radiation. I also started the lupron shot and letrozole combo. No side effects there.

    Hope everyone is doing well

  • Iknewit
    Iknewit Member Posts: 12

    Hello all,

    Surgery was on September 30th, honestly it's been a blur. I still have alot of aching and swelling but the oncologist at my follow about 2 weeks ago said it was fine. I can't believe iam on the otherside. Some days I feel fine and some days and nights iam curled up and can't move.

    I don't need anything further, the biopsy after the left MX showed no invasivenes, but the Oncologist did recommend going on Tamoxifen. For those on it, how has it been for you?

    I hope everyone is doing well.


  • purple-flower
    purple-flower Member Posts: 74

    Hi iknewit

    good news for you it sounds like. that's great. my surgery was Sept 11 so just coming up on 2 months out (mine was DMX). i feel really good all in all w most swelling and bruising gone. scheduled for implants on Dec 12. I had no lymph nodes or blood spread either and clear margins so I am now on tamoxifen. I was dreading it. So far (hasn't been that long) the only symptom is hot flashes which I get maybe 2-3 a night that wake me up and then I find it hard to go back to sleep. So I am up a lot at night. the sweaty part passes pretty quickly. I take my pill before bed so that's probably why, but I do that to not have hot flashes during the day w work and all. And at least right now since I am still healing I don't particularly sleep well anyway since can't stay on side much so flipping around a lot and on back. in the long term I probably need to get the sleep thing improved before it makes me (further) wacky in life being sleep deprived. I am currently trying to decide on moderate plus profile implants or high profile as I am relatively small framed and don't particularly want foobs too large. any advice on sleep, or those, or really anything... happy to hear. lying here 5am juat waiting a little longer before I give up and get out of bed. thinking I will start listening to podcasts or something maybe will help.

    anyway good luck w all and thanks for keeping me company for a few quiet minutes here.

    PF

  • Iknewit
    Iknewit Member Posts: 12

    Hi again Purple-flower,

    Iam glad to hear that f overall you're doing okay. Iam too, as I said some days worst than others. I haven't decided on reconstruction yet, I feel i needed to give myself some time to heal and absorb, before I put my body through another trauma. I still have a few weeks to decide about Tamoxifen, but I can't seem to agree that I want to do it. Im having so many sleepless nights, but sleeping during the day, I feel exhausted. I did notice putting pillows around my arms and elevating my head improved sleep. Occasionally sleeping aids helped, and a warm bath or shower before sleep. Hope the sleep thing improves for you. Let me know if anyone has more insight into Tamoxifen use and aide effects they went through.

    Night.



  • purple-flower
    purple-flower Member Posts: 74

    September ladies... how is everyone doing??? Thinking of you all and sending love and healing vibes. Happy Healthy New year everyone.

    PF

  • G1973
    G1973 Member Posts: 49

    Hi purple! Healing is going well. All fills are done and they look pretty good😁. Still in rads and doing xeloda on the radiation days. How are you?.

  • purple-flower
    purple-flower Member Posts: 74

    Hi there

    So glad to hear you are moving along G1973!! And, fabulous that you're liking the look. :-)

    All going ok here. I had my implant swap surgery on Dec 12th, so just about 4 weeks out from that. Foobs seem to be ok. They are not too big which I was fearing, so that's good for me, but definitely not feeling the same as natural. That is the way it is I guess.

    All in all, foobs look fine and I feel good. So, at this point, it's just more healing and getting back into shape, etc.

    I am on Tamoxifen also which I guess is ok. Been on it 4 months, and will have first appt w/oncologist in another 2 months I think. I REALLY hope it doesn't cause other issues like ovarian cancer, liver issues, etc. Sigh.

    Happy new year!!

    Jodi



  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173

    Hello all. New to the site...I too had surgery in September (Bil NSM). Wondering how everyone is doing/feeling? Have you all had exchange already? Hope all is well.

  • purple-flower
    purple-flower Member Posts: 74

    Hi there Livelovelaugh

    How are you doing?? feeling ok? are you in treatment right now?

    I had bilateral last Sept. and implant exchange in Dec. doing ok so far. had a good appt today and I get to sleep without a bra for the first time in 5 months tonight! So excited. (it's the little things...). I have been very blessed in that no chemo or radiation. jist tamoxifen now. feel happy and underling nervous for the road ahead. I am hoping to get life back on track... whatever that means in this altered reality.

    I hope you are doing ok. Here for you to talk whenever needed.

    PF

  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 173

    Hi purple,

    I am doing okay thank you. I was fine the first two weeks and I was like wow this is great lol but starting to get pains and discomfort. How are you?

    No, very fortunate that surgery was the only treatment. Glad to hear no chemo/rads for you. And yes the little things that make us happy lol I'm still in one 24/7, I don't feel comfortable without one.

    I know what you mean, I'm both happy and nervous as well. This is such an emotional roller coaster ride!

    Thanks for responding, I'm here for you and anyone else as well :)

  • JenInMass
    JenInMass Member Posts: 15

    Hi all! I haven't checked in in a while, I hope everyone is doing well. I had my exchange 4 weeks ago and am feeling almost normal in that respect, though both nervous and eager to get fully back to all physical activities (still 2 weeks of restrictions to go, with major cautions to gradually work back up to usual and not do anything super strenuous in the meantime...so my husband's still going to have to deal with snow shoveling if we get any big spring snowstorms). I'm not 100% done with reconstruction, though - my PS suggests both nipple reconstruction and fat grafting (my chest still has a caved in look above the implant on my mastectomy side). I am pretty sure I am not going to do the nipple, at least not any time soon (won't say never) but am planning on fat grafting as I'm pretty self-conscious about that.

    My other treatment has just been tamoxifen. I started that in October but took a few weeks off for surgery; I see the NP at my oncologist's office next month to check on that. Side effects are manageable so far, and to be honest I don't know what's tamoxifen and what's surgery. My periods have been a mess...constant spotting and not really sure when my cycle is or isn't starting - but they were also screwed up after my first surgeries last summer, I imagine removing breast tissue can do a number on that. And I'm getting out of breath way more easily just with the normal activities I'm already doing, like walking up the two flights of stairs to my office. But that also could be because I'm just extra out of shape after the surgeries in September and January. I got a good walking routine in after the mastectomy but weather and work obligations have kept me pretty sedentary since the exchange.

    I hope everyone is healing well!