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October 2020 surgery group

Lilir
Lilir Member Posts: 38

Saw the breast surgeon today. Opting for bilateral mastectomy. Plastic surgeons. One Monday and one Tuesday. Tumor board Wednesday. Have to go back to see surgeon before coordinator starts scheduling process.

Due to work schedule conflict, can not see surgeon until 10/14...😢 Coordinator going to see if surgeon approves moving forward without me having to go back in.

One week and one day since diagnosis. But, surgery scheduling. Juggling appointments to ensure I get maximum time paid by my employer. All of it may put me in surgery a full 30 days after diagnosis.

No chemo before surgery.

Good luck to everyone here!!!

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Comments

  • crsharper
    crsharper Member Posts: 36

    Hello! Lumpectomy and sentinel node biopsy is scheduled for 10/9. I'm not really nervous just so happy to finally have a surgery date. My initial diagnosis was end of August. Has taken forever it feels like to get here! Feels weird to say hope more people join us, because I don't hope anyone has to go through this...but would love to connect with more of us having surgery in October!


    Is your schedule scheduled Lilir?

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Hi! I'm scheduled for a left lumpectomy and sentinel node biopsy on 10/13. Same as you crsharper, I'm not too nervous, just glad surgery and treatment are getting underway. I'm more concerned with recovery when I come home, as I have 4 kiddos (14, 9, 3 and 2) and the little ones are used to climbing all over "Mama".

  • DiannaC13
    DiannaC13 Member Posts: 1

    Hi , I am scheduled for R breast lumpectomy on 10-06-20 with Sentinel Node Biopsy. Although I am nervous about the surgery I am ready to get my treatment plan finalized. As of now, I have met with the oncology radiologist and know I will be having radiation treatments. Anything else will be determined after my lumpectomy and Sentinel Node Biopsy and Oncotype test. Wishing everyone the best possible outcomes

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    hi everyone— I’m scheduled for a bilateral mastectomy with node biopsy this coming Monday, Oct 5. Not having reconstruction; just opting for going flat.

    I was diagnosed with IDC, Stage 2B less than a month ago so this whole episode feels like a hellish whirlwind. I’ve learned vocab and acronyms I wish I didn’t have need for, but I now hope I can help other women navigate the early days of diagnosis because, honestly, I didn’t hear a word the doctors said during the first week or so other than “you have breast cancer.” I think we really need others to help with the terminology translations and expectations.

    I’m very anxious about the surgery itself, the anesthesia, the recovery. I know a lot of women identify as warriors but I consider myself more of a worrier. I’ve been unable to focus or do much of anything other than read relentlessly about my diagnosis.

    Anyway, I hope you’re all holding up under the circumstances. Would love to chat.

    —Ellen 🍵🦋🌳

  • Lilir
    Lilir Member Posts: 38

    Have to wait for the coordinator. Everything happening next week. I am sure a bilateral mastectomy is the right answer for me. The big issue is Covid and the overnight stay in the hospital

  • Lilir
    Lilir Member Posts: 38

    they know your stage before surgery

  • Lilir
    Lilir Member Posts: 38

    Any info you may need. Please. Let me know how I can help. I work in the medical field, and I have done extensive research on all this.

    I will be checking in here quite often.

    I find the chats in the web site to be very well organized, and I am sticking to this site exclusively.

    please don’t hesitate to reach out.

    I wish U the best...

  • a_wully5
    a_wully5 Member Posts: 3

    Hello ladies! Happy to have found this group. I was diagnosed August 28th with 2 types of bc in my left breast. Invasive ductile carcinoma and invasive lobular carcinoma. Some background for everyone is that my last mammogram was Dec 10, 2019. It was 3D and nothing indicated cancer. I found lumps Aug 16. Lumps could not be seen on 3D mammogram due to my dense breast tissue, which leads me to believe it was there in December and just couldn't be seen. Ultrasound and biopsy followed. Breast MRI showed 2 additional masses in left breast (closer to chest wall). I found a small lump on my right breast and they are telling me it's nothing, however I am opting for bilateral mastectomy. Sentinel Lymph Node biopsy is scheduled for tomorrow, Oct 2nd. Bilateral mastectomy is scheduled for next Friday, Oct. 9th. Planning to do reconstruction, but have to wait on lymph node results which will determine if radiation is needed right after surgery. In that case, reconstruction will be in 6 mos.

  • Lilir
    Lilir Member Posts: 38

    WOW!! Mine were caught on MRI. Mammogram did not show the masses. The LCIS in my left breast pathology stated that an invasive component could not be ruled out. ( could be cancer as well)..... As I have been getting a little older, my breasts have just gotten bigger and bigger. Now, they are making cancer... bye Breasties... It was a good run while it lasted.

    I am also having bilateral mastectomy. Not having one for someone like you and I means constant MRI’s and biopsies.

    No thank u!!

    Emotions are in a rollercoaster, so I still have periods where I think I want the lumpectomy and biopsy of the LCIS.... If u start to hesitate, just think of the constant screening.....

    Good luck!!

  • a_wully5
    a_wully5 Member Posts: 3

    Crazy how similar! Good luck to you as well! I will check in this group often and update when I can❤️🙏

  • juju-mar
    juju-mar Member Posts: 200

    Hello everyone,

    I am home recovering from right lumpectomy and sentinel node biopsy yesterday 10/2. Pain is manageable. Initial diagnosis is IDC, but when she got in there, found the cancer to be larger and more lobular than originally thought. Feels like my breast went from a C to a B. My mammogram was December 2019 and was negative, but given the size of the tumor, it most likely was growing then and just missed. Insurance didn't cover a 3D, but that's what I will have from now on. My surgery was scheduled for 7:30am and I was discharged around noon. Staff was helpful and supportive. Now I wait for the pathology report on the node. Hang in there everyone! We will get thru this! Any question about surgery etc, please ask. I too was nervous, but it all went well. Juli

  • sherichie
    sherichie Member Posts: 5


    Hi!

    I'm scheduled for a bilateral mastectomy and reconstruction with expanders on October 9th, October 8th for Sentinal Lymph Node biopsy. I was diagnosed with stage 2 breast cancer on September 9th. A lump on my bottom right side which thank fully is contained. I noticed the lump in April, but am prone to getting cysts, so I didn't think anything of it. It wasn't going away and was actually getting bigger. Due to covid lockdowns, I couldn't get in to see my family doctor and was terrified to go to emerg, no thanks to my anxiety. Mid july I showed it to my sister, who is a nurse, who then encouraged me to get it checked out. I finally went August 14th, was immediately booked at the Breast Clinic for the 20th and had my biopsy on the 25th. Needless to say, September has been the loooooongest month ever. Removing both was a no brainer for me and will help alleviate any further anxiety of a lifetime of testing.

    I found this forum a few days ago, but was hesitant to join. Putting it out there makes it more real. Anyways, I'm so glad I did because it helps knowing I'm not alone.

    Good luck to all!


  • moderators
    moderators Posts: 8,521

    Welcome, Sherichie! We're so glad you made the decision to join our community - you are most certainly not alone, and you have come to the right place for support at you begin down this road. We wish you a speedy and smooth recovery, and we look forward to seeing you on the boards!

    The Mods

  • Lilir
    Lilir Member Posts: 38

    Congratulations Jujumartin!!! You are the first one here to get the little invaders out of your body....

    You are all in my thoughts and prayers....

    Big week for me. I started this thread because my surgery should happen in the next couple of weeks. However, I do not have a schedule yet because my breast surgeon wanted me to take time to decide and talk to some plastic surgeons about my options.

    Should know more by Thursday.

    Waiting to get treatment has been really difficult for me...

    Hope you are all doing well.

  • juju-mar
    juju-mar Member Posts: 200

    best of luck to you as well. I am finding the waiting is actually the hardest part. Gives my brain too much time to think of all the things that can go wrong. A friend gave me advice: she said she reached a point where she wasn't going to give cancer any more of her time. I have passed the first 48hrs, took the binding off and had a quick shower. Keeping up with Tylenol and Motrin. Other than a slow GI tract, I feel pretty normal. Really looking forward to my follow up appt and see what the surgeon feels about how things went and if the treatment plan will change. If it ends up being ILC instead of IDC, I'm not sure if that will change my thoughts on how to proceed

  • sherichie
    sherichie Member Posts: 5

    DiannaC13 Good luck on your procedure today! Will be thinking about you.

    WorldGirl1968 I know it's early, but how did your procedure go? Thoughts of healing and prayers your way!

    Friday, October 9th can't come soon enough for me. I can't wait to get this taken out of me.

    Hope everyone is doing well.

  • juju-mar
    juju-mar Member Posts: 200

    damn, just got the call from the surgeon. Stage 3 IDC with lobular features. + in 2 of the 4 nodes, so chemo will be needed, along with radiation. Also one margin still +, so another surgery is needed....thinking mastectomy now!

  • Lilir
    Lilir Member Posts: 38

    I have spoken to many people, and I have asked questions on this site regarding mastectomy. I think I need to give you the same answer everyone gave me..... It is really up to you and what you feel comfortable with. But... here is my thoughts. Hope they help...

    I am committed to bilateral mastectomy. Saw two plastic surgeons this week, and I have made decision on who to use. Basically, I want over the muscle reconstruction. ( another topic) Both have pretty amazing results. But, I know those can vary and I am ok with that. That being said, it is a huge surgery and I know that.... I am scared, and I change my mind once a day at least. But, then I remember the every 6 month screening and it solidifies my decision.

    From my small sample size of women with beast cancer, all the women with mastectomies seemed much happier than women with lumpectomies. The missing the margins thing is very common among lumpectomy people I spoke to. One person I spoke to had a lumpectomy and decided to go with mastectomy instead because of your very same reason. She chose mastectomy on the breast cancer side, and she is happy with her decisions. She has also chosen reconstruction to match her other breast.

    There are so many stories. There are so many different decisions you can make. None of them are wrong. Take a deep breath and try to decide what it is you feel the most comfortable with.

    I will be here to support you. You can get through this......

  • Lilir
    Lilir Member Posts: 38

    Hope all went well today!!!

  • Lilir
    Lilir Member Posts: 38

    P.S. for all having lumpectomies.....

    My decision to have a mastectomy is based on my initial bilateral breast findings, and my risk.

    There are also many many women on this site alone that have had good experiences with lumpectomies. It all depends on your situation.

  • sherichie
    sherichie Member Posts: 5

    Lilir Thanks so much for all your insight. I've made the decision to do the bilateral mastectomy myself, although daily i rethink it, then remind myself about the 6 mths to a year of screening as well. My surgery is in 2 days and I'm absolutely terrified, but am confident I will get through this. Thoughts and prayers to everyone!

  • marie914
    marie914 Member Posts: 152

    I chose a left mastectomy and expander. One of the main reasons is I didn't want radiation, but now I have to still have hormone treatment unless I refuse which I might. I'm waiting on my mammoprint (similar to oncotype). I also had another location on the same breast with abnormal cells and thought by the time they took both, the breast is lots smaller. Also I heard about having to go back in for more surgery if they didn't get clear margins.

    So far I am happy with my decision to have left mastectomy but wished it would have saved me from hormones too.

  • Lilir
    Lilir Member Posts: 38

    your results are excellent!! I pray for your situation every day...

    By hormone treatment you mean tamoxefen or something like that?

    All of the treatments offered to us are meant to help us. But, nothing comes for free. It’s all based on risk / reward. Some of us have tumors that don’t have estrogen receptors. Those tumors require chemo. Her 2 receptor tumors have specific drugs that fight them. Once again, chemo. Some of us will have cells in our lymph nodes. Higher chance of radiation regardless of estrogen receptors.

    My tumor has estrogen receptors and I feel fortunate for this. If given a choice, of course I would choose no cancer. But, I have it. And after initial treatment, I will have to take an estrogen blocker for 10 years. I am happy there is something I can take. Some of us don’t get that choice.

    Research very carefully your decision not to take the estrogen blocker. It is a proven treatment plan that reduces your chance of reoccurrence. I know you had a mastectomy, but research exactly what is your risk of local and distant re-occurrence without the estrogen blocker. (Yes distant metastasis)

    Good luck to u

  • marie914
    marie914 Member Posts: 152

    They want me to take femara. I am postmenopausal. I am overweight and would think losing weight, changing my diet, and exercising would help my risk more than taking femara which can (I know it is only for some people) cause weight gain, muscle/joint pain, vaginal dryness, eye problems, hair loss, hot flashes (which I already have quite bad). I just think that would be better for me. I am doing more research though and might try it but if I get side effects - I'm off. Better to live and enjoy life every day than sitting on the sidelines miserable.

  • juju-mar
    juju-mar Member Posts: 200

    Hi all, just wanted to share I am 5 days post op and feel normal. Stopped the narcotics Saturday night and used Tylenol till yesterday. Drink lots of water, the pain meds have a way of slowing your GI tract, making you feel bloated and miserable. Also found sleep more comfortable surrounding myself with pillows. Let people help you when they offer. It is nice not to have to worry about making dinner every night! Have a supply of thank you notes handy. Do something daily that makes you smile. Cry ifyou need to, that's important too. But also look for silver linings wherever they may be. I am currently making an appt for a second opinion. Can't believe my info could change so quickly in 5 weeks! From stage 2, clear nodes, to stage 3 and 2 positive nodes! Still researching second lumpectomy vs mastectomy. She took 99% of the tumor, so mastectomy would be for my peace of mind I guess. Good luck to those going into surgery soon

  • Lilir
    Lilir Member Posts: 38

    marie914,

    We all make our own choices. And I want you to know I respect your perspective. However, I feel compelled to tell you that my aunt was diagnosed with breast CA at around 50. She had a lumpectomy, radiation, and took tamoxifen for about 1 year. She then decided she did not want to take the Tamoxefen any more. Her cancer re-occurred as inflammatory breast cancer at age 57. She passed at 62. 😢

    It sucks to have to put a chemical in your body. Trust me. I know. But, it is something that is there to help you. Please consider your options very carefully

  • juju-mar
    juju-mar Member Posts: 200

    How is everyone doing

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    Hi Everyone! I'm 3 days post-op (surgery was Mon. 10/5) from my BMX without reconstruction and feeling much better than I would have expected. Everyone's recovery is different but my main struggle was with the anesthesia!! I was horribly nauseated for 30+ hours and vomiting with a large chest incision is really no fun. Other than that, my pain has been very manageable. The opioids in the first day after surgery just worsened my nausea, so I dialed down to Tylenol and it's been fine. Truly, I expected worse pain so I'm pleasantly surprised about that. Also, I consider myself kind of wimpy about pain in general but maybe I'm stronger than I thought!

    I was discharged from the hospital 48 hours after the surgery. Because I've opted for "going flat" and didn't have any of the considerations associated with plastic surgery, my recovery has seemed quick so far. Regarding the flat closure, I had a very long talk with my surgeon prior to the procedure and made it clear that I was hoping for the "aesthetic flat closure" as defined by the National Cancer Institute. So I have a chest-wide horizontal scar just as I had requested. I have significant swelling around the incision, so at the moment my chest looks a little bit like a sausage but I'm doing everything I can to ensure that it heals nicely.

    As for recovery at home so far, I've struggled a bit with emptying the drains. It's just an awkward procedure and takes a little while to get the hang of it. Other than that, I'm just tired and trying to take it easy. I'm always a bit anemic and even more so now, so I had a blood transfusion before leaving the hospital and I'm taking Iron supplements (with stool softeners!) and watching my diet.

    The best news is that the surgeon didn't find any cancer in the sentinel and only removed one lymph node, so I'm hoping that my chemo needs will be minimal. I will begin Tamoxifen at some point soon. I do not have my Oncotype score yet and I'm still waiting for my BRCA results, so that might influence the oncologist.

    I'm so incredibly thankful to my family and friends. Their support has been absolutely amazing. Please feel free to reach out if you have a pending surgery or similar diagnosis.

  • amyb131
    amyb131 Member Posts: 3

    Hi! I too am 3 days post op for bmx on 10/5. I have chosen reconstruction with expanders. Surgery went well and I was only kept overnight. I only had mild nausea post op, which was relieved with zofran. The worst part the night of and following day was the extreme dry mouth...it was awful, and the getting up to go to the bathroom. The soreness from the expanders was pretty intense, but being home two days now, I am moving around and feeling better. I've been given Percocet for pain and Valium for muscle spasms and to help me rest comfortably at night. I am strictly in a recliner for sleeping. I am a side sleeper, so I am missing that, but it's tolerable. I have two drains that have been manageable, also. My first post op with the plastic surgeon was today, and everything looks good. I have my nipples, and they are doing well! I was able to shed that awful post surgical bra and go to a light fitting camisole. Will probably have my drains until next Thurs, unless they clear up sooner. I had two sentinel nodes removed, so I am waiting on that pathology. Praying that and my oncotype test goes well, as it's likely I may only be looking at Tamoxifen. It feels so good to have surgery behind me! I wish all you ladies the BEST! You can do this...

  • Lilir
    Lilir Member Posts: 38

    Congratulations to everyone who got the little invader or invaders out of their body!!

    I was just scheduled for my surgery for Nov 6th. I guess that puts me in the Nov surgery group. Lol. But, I would like to stick with you gals if that’s ok. I am pretty disappointed that I have to wait. But, I am thankful for the news so far.

    Mammaprint low risk, so no chemo.

    Mastectomy with reconstruction Nov 6th.

    Taking lymph nodes on right and checking during surgery. Ancillary mode dissection if necessary. Radiation if in lymph nodes.

    Taking l for lymph nodes as well in the even the LCIS reveals any cancer. (Pathology on biopsy stated that “invasive component” (cancer) could not be ruled out)

    Stay strong everyone... we are getting places now..