October 2018 Surgery Support Group

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  • LillianGish
    LillianGish Member Posts: 108
    edited November 2018

    Hi,

    I wish I found you guys sooner. October might have been a little less terrifying! I have lost count of all the tests, but I did have thee ultrasound guided biopsies...and one mri guided biopsy which I hope to never have again. Geez.

    Had lumpectomy surgery on October 29th. They took three sentinel lymph nodes, and I was told late last week the nodes were negative and the margins clean.

    Still waiting for path report, staging and oncotype score.

    Anxious lady, I'm sorry about the oncotype score. I feel like that's going to be me too, given the size and grade of my tumor. Anxious is me too. So we can be so together.

    Nice to “meet" you all, although I'm sorry for the circumstances. I never thought I'd be going through this....not sure why


  • Trishyla
    Trishyla Member Posts: 1,005
    edited November 2018

    Just wanted to drop by to say thank you to you wonderful ladies for all the great support. It really does help.

    I'm four days out from my second revision surgery. I was hoping it would be my final one, but this plastic surgeon did so little (far, far less than she promised she would do), that I fear I will need one more. It's been over two years, and I just want to be done with it all.

    I also have some tissue necrosis on the right side nipple reconstruction. Between that and the poor job she did on revising my abdominal scar, I really wish I had walked out when she had her pre-op meltdown.

    All in all I am not the least bit happy with this doctor. I'm leaning toward filing a report with City of Hope. I don't want anyone else to have to go through what I went through on Tuesday.

    Hope everyone us healing well. Sending warm hugs.

    Trish

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    so sorry, trish. I agree you should file a report. I hope you can find a more skilled and kind ps

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    Lillian, good to hear about clean margins and negative nodes! Best wishes for the path report.



  • star2017
    star2017 Member Posts: 827
    edited November 2018

    I saw my gyn surgeon Friday. I'm healing well after the ooph, tho there is still a little pain and tenderness. I'm able to manage without meds mostly.


    The path report from my ovaries came back clean and everything in my uterus (still inside) looked good. So far no obvious symptoms of menopause either, which is what I was quite scared about. Hopefully the transition will be mild.



  • Wised
    Wised Member Posts: 351
    edited November 2018

    Liliangish, here's hoping for a wonderful path report.

    Trishyla, I'm so sorry your surgeon behaved that way! Seriously, you'd think she'd never worked w cancer patients before! Not that it would be okay to any like that w anyone else, but we are already traumatized out of our minds! Reporting her might save another patient from going through what you've been through.

    Star 🌟 I'm so glad your ooph went well and the pathology came back clean. You deserve a good report .

  • Dani444
    Dani444 Member Posts: 522
    edited November 2018

    Lillian- such great news on the nodes and clear margins, Hope your path report and oncotype score bring you more good news!

    Trishyla- So sorry you are dealing with healing issues. And on top of that the bad experience you had before surgery. So sorry that happened to you.

    Star-- Great news on your path report!! I hope you do have a smooth transition into menopause!!

  • Kat22
    Kat22 Member Posts: 111
    edited November 2018

    Good news: Clear margins!

    A question about seromas: I think I have one in the lymph node area. Not real knowledgeable, so I'll ask y'all. At what point does it become necessary to check w/the doc? It's maybe tennis ball size or a little smaller, not painful or draining or anything. I have a followup on the 20th. Should I go in sooner? Thanks!

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Kat22. II would go sooner as it might need drained. In the meantime, moist heat will help you absorb some of the fluid.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    kat22, I agree that you should contact the doc and maybe go in sooner. Mine didn’t seem to be growing and was smaller than a tennis ball, so the doctor said it would absorb naturally, and it did within a month. But based on the size and rate of growth, doctors may choose to handle t differently.

  • jacks24
    jacks24 Member Posts: 10
    edited November 2018

    I had surgery October 16... anyone else around the same time frame? I had a single mastectomy and a reduction/lift on the other side. How are you feeling? Are you having pains? It seems every day if different over here. :(

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    LillianGish,

    Awesome about the clean nodes and margins! Best wishes on the path reports!


    Trishyla,

    I would be working on filing a complaint to the medical board! That surgeon sounds like a POS and PIA! Hopefully, you can find another doctor that will treat you right like they should.


    Star2017,

    Great ne a on the reports! Bet this takes some worry off. Hoping you have an easy transition into menopause and any further treatment.


    Kat22,

    I would definitely try to go in sooner. My PS removed the final two drains on Friday and he said this is the point that he gets anxious because of fluid build up. He said to watch for knots and redness, and to go straight to him or his office if that happens. Hope it gets better!

    Jacks24,

    I had my bilateral MX on the 15th. Some pains throughout the day, but overall feeling fine. I do get tired more easily, and my doctor released me to work. Did you have any nodes removed? This makes the stiffness last longer? some days are tougher than others...just listen to your body and when it has had enough it will let you know!

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    Anyone doing any exercises after surgery? I keep forgetting to ask the doctor about different stuff that I can do. I was released for work, but that is in an office so different from doing exercises. I would like to keep up on the weight loss I have had since surgery (hopefully not just breast weight removed) so any help would be great!

  • Anx789
    Anx789 Member Posts: 168
    edited November 2018

    Jack24 - I had my UMX & SNB on 10/16. My concern is swelling below my armpit that feels like getting bigger and smaller throughout the day everyday.

    Bookworm - do you have any treatment plan set?

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    Anxiouslady,

    No treatment set up yet. My Mo would not see me until exactly 4weeks after surgery. At the original appointment he stated if I came back with any positive nodes he was probably going to have me do chemo and rads along with Tamoxifen for 5 year minimum. He did recommend me having a hysterectomy as well due to BRCA 2 + and fibroids. I was hoping to get into some activity prior to treatment and try to do it through chemo as I have heard that helps with SEs.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    bookworm, my mo also asked me to consider the hysterectomy but research doesn’t show an elevated risk of uterine cancer with brca2 (based on what I read). Mo suggested I discuss with gyn surgeon who said that she would do the hysterectomy if I felt strongly about it but did not feel herself it was worth the surgical risks as I did not have an increased risk based on the gene. I was torn for a while, but didn’t end up doing it. Partly I decided not to bc I wasn’t ready for the increased recovery time the hysterectomy would require and everyone felt I shouldn’t delay the ovary removal. I may end up doing the hysterectomy in the future. We’ll see.

    Best wishes as you figure what makes the most sense for you.

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    star2017,

    The fibroids ( they continue grow and have doubled in size in the past two years) are the reason they mentioned a hysterectomy over the oophorectomy. The only way to get them to shrink or at least not grow is to take birth control pills and with my cancer the Gyno said a big no to that. They are really just worried about ovarian cancer, but with an ever growing fibroid the dr believes the hysterectomy would work better for me. It can be pretty painful during cycles and stuff.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    with the fibroids that makes total sense! I’m sorry it means more surgery for you, but hopefully it’ll make things easier!



  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    star2017,

    Hope so. Just hate to do it at 35, but hopefully it will help for long term reduction of recurrence

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    I know the feeling, bookworm. We’re done having kids, so I was okay making the decision. Is this something you can delay at all, if you want?



  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    star2017,

    Probably not too long because of the two issues and then adding Tamoxifen. I have an awesome (almost) 7 year old, and heis an only child so having more children is not so much an issue as symptoms of menopause! Hoping for you and me that those symptoms don’t get too bad!

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    anxiouslady,

    Just a thought, but maybe keepa record of the measurements of your arm to see if the swelling is happening throughout versus just under the ar? Maybe evenkeep track of it for a week based on time and possibly what activities you were doing? That might help when you go to the doctor to show him/her the fluctuations.

  • Kat22
    Kat22 Member Posts: 111
    edited November 2018

    Thanks for the feedback, ladies! I just spoke to the surgeon's office and I'll be going in tomorrow to get it looked at. Thanks!

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    great! Hopefully it’ll be a simple thing to handle.



  • star2017
    star2017 Member Posts: 827
    edited November 2018

    saw my ps today. Everything healing well. I think I get a break now, until I decide what to do about nipple recon. If people have any thoughts, please share. I’ve still got one nipple, on the prophylactic side

  • Bookworm14
    Bookworm14 Member Posts: 176
    edited November 2018

    star2017,

    Great news! About time for a breather

  • Wised
    Wised Member Posts: 351
    edited November 2018

    Oh star 🌟 that's very good news!

  • Dani444
    Dani444 Member Posts: 522
    edited November 2018

    Star- Great news, and so glad you get a breather! I had an UMX so I have one remaining nipple as well, I am thinking of just a tattoo down the line. There is a tattoo artist that comes to my PS office so it would be covered by my insurance.

    Kat22- Glad you were able to get in sooner, hopefully it turns out to be nothing to worry about!

    I go in a bit for my PS follow up, and I cannot wait to get this giant dressing off, the edges are so itchy! I am on the edge of possibly getting the drain out so maybe I will get lucky today and get rid of that too!

    As for the plan for my positive nodes, there is no plan yet! My BS wants to bring it to tumor board on thursday but she still has a tentative surgery date for me on friday for full dissection. It feels too rushed, and I don't think I can mentally face that decision so soon. She says she likes to do the full dissection sooner rather than later but the slow growing nature of ILC makes me think I could have a minute to decide. We talked about the z-11 trial and how there was no difference between the groups that had full dissection and those that had chemo and rads. My BS said she worries about my quality of life if I get lymphedema, and that it would significantly affect my abitlity to do my job. A pathologist I work with who has 20+ years experience has looked at my pathology and consulted with a MO that has given me his cell number to call and ask questions. I will hopefully do that later today. Hopefully the tumor board will offer some more insight...... more waiting but I appreciate my BS diligence.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    re: the nipple recon. The ps had suggested using the remaining nipple to reconstruct the other one. I had been okay with this idea, but now I feel like messing with the one part of my breasts that's still in tact doesn't feel good. Should I just do 3D tattooing? Has anyone tried the temporary nipples The silicone ones?


    So confused! But also not something I need to rush in to.



  • Dreya711
    Dreya711 Member Posts: 12
    edited November 2018

    Hello! I wish I had found this group a month ago! I had a bmx on Oct. 3rd with tissue expanders. I am just now starting to feel somewhat myself again, but these expanders are SO uncomfortable. Hoping it gets better soon and counting the days until my exchange surgery. Tomorrow I go in for genetic counseling and start physical therapy. I am little behind on treatment as I had some skin not do well and had to have an additional surgery to remove that. Hopefully no more speed bumps going forward!

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