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January 2019 Surgery Support Group

mactaz
mactaz Member Posts: 592

I haven't seen a topic for those of us having surgery in January 2019 so thought I would start one.

Suzzana-January 3, lumpectomy, sentinel node removal and reduction on both sides.

Kc1972-January 7, lumpectomy

Yogamom2-January 8, lumpectomy

Hazelhappy-January 9, BMX with sentinel node biopsy without reconstruction

Cerzink-January 10, BMX

Hongh-January 15, BMX

Parchjen-January 16, BMX, sentinel node removal and immediate reconstruction.

Alto-January 16, UMX-N

Kimbakb-January 17, lumpectomy and reduction surgery

FlowersBaseball-January 17th. BMX. Expanders

Beingpositive, January 18-BMX with Diep

PaulaAtlantaGA-January 20, tissue expanders removed and fat grafting done

Bellemire-January 21, BMX with TE and Sentinel node extraxtion

Bird92203-January 21, UMX

Jaboo-January 21, BMX

Lilanj-January 22, BMX without reconstruction and ALND

Beepositive-January 23 - BMX with sentinel node removal and immediate construction

Cascadian-January 23, Double Mastectomy, no reconstruction, no touching lymph nodes whatsoever..

Jacy-January 23, lumpectomy and sentinel node removal

DebraC-January 23,Lumpectomy: Right; Lymph node removal: Sentinel

KMS2016 - January 24, Jan 24th, TEs removed and silicones placed

MACTAZ - January 28, UMX, right with sentinel node extraction and TE placement.

Mamihen (Liv)-January 30, bilateral prophylactic mastectomies

Notgivinup-January 30, lumpectomy with sentinel node removal

Conniepaints-January 30, lumpectomy

Lindzfay-January 30, smx n the 30th with sentinel node biopsy and expander placement.

Betterdazeahead-January 31, BMX with sentinel node removal and reconstruction (expanders)

CSRoberts-January 31, lumpectomy, right

Applejuice-Jan 23, nipple spare surgery, sentinel lymph node biopsy (which came back negative) and February 1, MDX


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Comments

  • Suzanna
    Suzanna Member Posts: 10

    Hi. I have surgery scheduled for the 3rd of January. I’ll be having a lumpectomy, sentinel node removal and reduction on both sides. Nervous, but ready to start recovering.

  • mactaz
    mactaz Member Posts: 592

    Suzzana, welcome to this topic. Sorry we are here but I have found these groups helpful and supportive.

    I finished chemo yesterday and now have 6 weeks before surgery. I’m excited to get this rolling but sure as time gets closer will get nervous about the whole thing.

    Take care.

  • Suzanna
    Suzanna Member Posts: 10

    Mactaz,

    You have gone through so much already. I hope you have a chance to enjoy your holidays knowing that you are almost to the end of this race.

  • mactaz
    mactaz Member Posts: 592

    Suzanne, when were you just diagnosed? Not sure you are comfortable sharing info but sometimes it does help others that might have information to help you understand your journey through BC. If you are comfortable sharing, you just go to your profile and select the info you are willing to share. No pressure, really a personal decision.

    I have a lengthy journey yet, but gets easier after chemo and surgery. I’m now on 11 cycles of Herceptin and Perjeta which are targeted drugs for HER2+ receptors. That will last until July 2019. I also will be on hormone inhibitors for my hormone+ receptors for 10 years. Both of these receptors attach to cancer cells and speed up the growth. I have learned so much from these boards.

    Just some thoughts, you might be completely knowledgeable about the site, but if you do have any questions just let me know. Take care
  • Cascadians
    Cascadians Member Posts: 72

    Double mastectomy scheduled for January 23rd. Sentinel node removal. No reconstruction. Happy to go flat and fabulous.

    Most worried about lymph node removal, don't want it, don't want any impairment or loss of functionality or range of motion.

    Pre-Op appoint on January 8th, lots of questions, will ask that sentinel nodes be only 1, at most 3, and removed via mastectomy incision.

    Will ask for lots of nerve blockers and pain meds, bariatric surgery bed (port surgery one was so tiny they had to station a nurse on each side to keep me from falling off). Wonder if I'll be staying in hospital overnight. So many questions.

    Found this site today and have been reading previous surgery threads, learned a lot. Glad to keep company with all of you as we go through this together.

    Just completed 11 out of 12 weekly Taxol / Herceptin chemos so almost done with this round of chemo. Hoping to avoid radiation by doing double mastectomy. Radiation oncologist said that because I'm fat, I will "smoke, burn, fry and blister" with radiation. No thanks. Praying they find zero cancer in sentinel lymph nodes and just need the Herceptin for a year then the estrogen blocking pills for 10 years although 10 years sounds excessive.

    Praying for all of us, no complications, quick complete recovery, kick cancer to the curb and get back to healthy energetic living.

  • mactaz
    mactaz Member Posts: 592
    Cascadians and Suzanna, first hope you are both well and enjoying the holiday season. I find it tough but try to stay positive.

    Cascadians, welcome to our small group, sorry you have to be here though. There are a topic thread you might be interested in, if you are aware of that group just ignore this😁. Since you have triple+ BC take a TRIPLE POSITIVE GROUP. This group has a wealth of knowledge about our type of cancer, I’m also triple+. They have been very helpful to me making my way through all the questions and information that is thrown at us.

    I have an appointment with my BS tomorrow and hopefully will get more details on how the surgery is performed, how many nodes, etc. I had hoped for a lumpectomy but unfortunately because of the type of cancer and I was multi-focal that wasn’t an option so decided on single MX.

    It seems people know how many nodes will be removed before surgery, the last time I talked with her she said she didn’t know how many sentinel nodes there are until you get in there but that seems odd since others I have read know exactly how many they are going fore before the surgery. I’m going to push her on this question.

    Also, I will be spending one night in the hospital. I am having a tissue expander placed in my right breast but BS said one night was standard. I would think you would also have a night stay, if not I’m wondering if you shouldn’t request it. This is fairly extensive surgery.

    When is your last chemo? Mine was Dec 13 but I had 6 rounds of TCHP (taxotere, carboplaitin, Herceptin and perjeta) versus taxol. I am continuing both H&P for at least until after surgery and than my OC will re-evaluate whether I need to keep perjeta in the mix. That will depend on my success rate, if no PCR, will have to do both HP for the 11 cycles. Also will be starting hormone targeted therapy at some time but not sure when.

    Again, welcome to the small group, if there is anything I can help with let me know.

    🤗 to you both.


  • Cascadians
    Cascadians Member Posts: 72

    Thanks for the welcome, Mactaz. Had meeting with Endocrinologist today, also coming off chemo steroid high, so slept most of day. Was diagnosed with pretty bad diabetes same time as cancer so double whammy. My last Taxol/Herceptin chemo is next Wednesday, then 2 Herceptin/3x/dose infusions before surgery. Busy reading the very long thread about what to buy / how to prepare for surgery.

    Lots of nerve wracking prep work and appointments with specialists, trying to line up everything now.

  • parchjen
    parchjen Member Posts: 3

    I am having a bilateral mastectomy with sentinel node removal and hopefully immediate reconstruction on January 16th. Thank you for starting this thread. Terrified but ready to get the process done. Praying for all of you strong ladies

  • mactaz
    mactaz Member Posts: 592

    Parchjen, welcome to or small group. Believe me I understand how you feel. I’m nervous about the operation, my path results, node removal, complications with lymphedema, etc, etc, etc. The only thing that keeps me sane is looking at it as the next step, seems like we are constantly having to research new issues and try to make the best decisions we can with the info we have.

    I hate we have to be here but I’m so thankful for this site. I have gotten so much support, insight and advice from women facing the same issues.

    I hope you are having a great holiday and not worrying too much. Take care and 🤗.

  • parchjen
    parchjen Member Posts: 3

    Thank you so much. Yes a small group now which I am afraid will expand. The support on this website is amazing. Will be praying for all of you

  • Suzanna
    Suzanna Member Posts: 10

    Hi Mactaz and everybody,


    I got on and filled in my missing info. I think I got it all down. I spent the week going to 5 doctors appointments for all of the pre-surgery jazz. My pre-op was all good, but my calcium is a bit low. It's not too low for the surgery, though. I have hashimotos, which is an autoimmune disorder that affects the thyroid, so it may be off due to that. I'll, figure it out after I get this cancer cut out. My endocrinologist ran my blood this week to make sure all of my thyroid numbers are good, because they need to be level or I won't heal well. I had a very interesting meeting with my breast surgeon. I thought I was really in the clear, because my pathology reports up until this time have said my dcis was 1.2mm, high grade with comedy necrosis. Not the best, but that's super small. YAY! She said they actually don't know how large it is until after surgery because that was only a piece of it in the biopsy and the MRI around it lit up in a size about the size of a lime. BOO! Im an eternal optimist, so I like to always find the bright side. It's just where my mind goes, thank goodness. Even though I truly think this way, I am having a hard time sleeping and I never use the bathroom (Too much TMI, but you ladies are the only ones who get it!) My doctor gave me something to help me sleep (which I obviously haven't taken yet since I am up at 1am) and told me to start miralax. I hope it works because supposedly I'll feel bad after surgery if it doesn't. I don't feel bad at all now. I guess I'm just weird.

    I was told that I will stay in the hospital for a night, barring complications. They also told me there will be 2 drains, but they usually come out the next day for reduction patients. I'm getting more and more nervous, but I'm trying not to let this suck the joy out of Christmas for me. I have 3 teenage (19,16,12) kids, so Christmas is still a really fun, exciting time at our house. I don't let the cancer diagnosis sneak in until they are safely tucked away at night. That is why I haven't been on for a while.

    I hope you are all having a wonderful holiday. I pray that you are able to have some times that your anxiety eases and you are able to enjoy the holiday season. Hugs!!!


  • mactaz
    mactaz Member Posts: 592

    Suzanna, You have been through a lot. Just seems to be a never ending cycle.

    By the way, not TMI. I have struggled with bouts of constipation then diaherra from the beginning when I started chemo and I know how miserable it can make you feel. Every cycle I had to constantly watch and go from one type of medication to another. I finally settled using two different types, Mirolax most of the time but during bad bouts I added Senna to the mix and took both. I have some other things the docs told me about if it gets especially bad, let me know.

    I saw my BS yesterday and came away with more info which made me feel a bit better. As with you, I will have two drains and 1night in the hospital as long as there are no complications. I also got a prescription for breast surgery camisoles and bras, I was wondering about that. The one issue I still need to decide what to tell her about auxiliary node extraction. She said she will extract all sentinel nodes and if any cancer is present then will do the auxiliary nodes. I told her I needed to think about the auxiliary node extraction. That scares me the most due to lymphedema, Does anyone know of any other possibilities rather that extracting all auxiliary nodes. I know you can do radiation but from what I understand the risk of getting lymphedema with radiation is still high. I’m just so confused on this issue.

    Hope you all have a Merry Christmas, I plan on a quiet on, still recovering from last chemo, but still glad to be moving on. 🤗😘
  • Cascadians
    Cascadians Member Posts: 72

    Lymph node extraction is also my biggest worry. I will NOT allow more than 3 sentinel nodes taken out. Was told more taken out will not change treatment. They will say to radiate and add more chemo.

    I worry about becoming disabled, loss of arm function, loss of range of motion, and lymphedema. I am active and kayak and cannot afford to lose use of my arms. It comes to quality of life vs quantity of life. Will be having this discussion next week after Christmas with MedOnc and Breast Surgeon.

    Just discovered I cannot post a link so google search for: "breast cancer choices faq lymph" and read the article

    which gives extremely important not-well-known info about lymph node removal. I am seriously thinking of forbidding any messing with lymph nodes whatsoever.

  • mactaz
    mactaz Member Posts: 592

    thanks for the info cascadian, I will check it out. I agree totally, I don’t want to have a long life being in pain and not enjoying the outdoors and just basic living.

  • Cascadians
    Cascadians Member Posts: 72

    It's so extreme. You can never ever have blood drawn on that arm, or blood pressure taken there, or get a bee sting, or cut, or hang nail, or lift anything, or wear a shoulder strap, or raise arm above head, etc etc etc. Plus swelling, pain and numbness forever in arm and armpit. It is ridiculous. It is instant disability and handicap. Node removal does NOT improve survivability odds at all. It is only a diagnostic tool for further treatment and one better served by pathology of the actual tumor and its surroundings and vascular invasion.

  • mactaz
    mactaz Member Posts: 592

    that makes sense to me cascadian. I read the article, I'm now questioning if I should allow any sentinel nodes extracted also. All my scans came back as no node involvement. My issue is I am triple positive (I see you are also triple positive)which Is very agressive. But, I have also gone through chemo and neoadjunct infusions of Herceptin and Perjeta and will continue with HP for another 11 doses. Then they want me on hormone therapy to block the hormone receptors from attaching to cancerous cells for 10 years. I would think this is enough targeted therapy to reduce my risk of occurrence.

  • Cascadians
    Cascadians Member Posts: 72

    Mactaz, we are in the same boat. My MedOnc said if it's spread, there's a newer drug out called T-DM1 Kadcyla ado-trastuzumab emtansine that targets our aggressive nasty cancer well with fewer side effects. Radiation to the armpit causes less lymphedema than surgery. I don't want radiation either. But I just can't see allowing my armpit cut up and lifelong disability when it is actually not necessary.

  • Cascadians
    Cascadians Member Posts: 72

    "Ado-trastuzumab emtansine (T-DM1; Kadcyla) reduced the risk of invasive disease recurrence or death by 50% compared with trastuzumab (Herceptin) as an adjuvant treatment for patients with HER2-positive early breast cancer who had residual invasive disease following neoadjuvant therapy.

    Results from the phase III KATHERINE study showed that the 3-year invasive disease-free survival (iDFS) rate was 88.3% with T-DM1 versus 77.0% with trastuzumab. The iDFS benefit with T-DM1 was upheld across key patient subgroups, according to results presented at the 2018 San Antonio Breast Cancer Symposium and simultaneously published in the New England Journal of Medicine.1,2"

  • Cascadians
    Cascadians Member Posts: 72

    "The open-label KATHERINE trial included 1486 patients with centrally confirmed HER2-positive, nonmetastatic, invasive primary breast cancer who were found to have residual invasive tumor in the breast or axillary nodes at surgery after completing neoadjuvant chemotherapy. Neoadjuvant chemotherapy had to consist of ≥6 cycles of chemotherapy containing a taxane (with or without anthracycline) and ≥9 weeks of trastuzumab."

    So here we see if there's residual invasive tumor in the breast at surgery, determined by pathology, and after pre-surgery chemo, then they're going to use Kadcyla with much improved chances for survival. They don't have to have taken out any lymph nodes to determine this.

  • mactaz
    mactaz Member Posts: 592

    cascadian, thanks, I had read that study and it seems promising. That’s a good thought, I think I will go see my ONC before I make any decision an sentinel.

    Take care

  • Suzanna
    Suzanna Member Posts: 10

    Merry Christmas, ladies! I hope you had a wonderful holiday! I have to say, I have been so busy, that I didn't have time to worry about the surgery. That has been wonderful!

    Now that I have done the holiday, work, though, I really feel nervous! It just feels like it is looming in on me. I have a week and 2 days, and I feel like it is the gateway to my future. I felt this way about my second biopsy, but I know that the information we get from the tissue removed during the surgery truly denotes what my future will hold. I pray that everything comes out clean, as they suspect it will from the past testing. It just feels like it is all up in the air and there is absolutely nothing I can do about it. I know you all know the feeling. I just feel like I am at the mercy of this stupid cancer diagnosis. I feel a little like I am spiraling out of control, but I know that I have had so much more time to digest everything than most people, because I am having my first treatment a full 2 months after my initial diagnosis. wow! Breast cancer sucks!

  • yogamom2
    yogamom2 Member Posts: 64

    Hi all, Great way to start a new year.

    My lumpectomy surgery is scheduled for Jan 8. Mammo & Biopsy reports state: DCIS - small , well contained, intermediate nuclear grade, cribiform, associated w/ calcifications found on mammogram with no mass or symptoms; biopsy showed 95% positive for both estrogen & progesterone receptors. My surgeon ordered additional testing and said I won't need lymph nodes removed .She is considered a breast specialist in our area and was recently at a BC conference in TX- so fingers crossed.

    I've asked to have the OncoType DX test for DCIS, hoping to avoid or limit radiation tx. I'm more afraid of the possibility of lymphadema than both the diagnosis and surgery, so hoping the results come back with very low risk.. Have been told will need to wait until all pathology completed to discuss with a medical oncologist any need for radiation tx and/or hormone blocking medication .

    Wishing all the best of luck on your individual journeys. Reading these posts I feel very lucky that mine may have been caught very early. I completely understand the concerns about limiting lifestyle following tx as that is my greatest fear as well. My activities are my mental health program. Thanks for being here and sharing. Send me luck and light for Jan 8th.

  • mactaz
    mactaz Member Posts: 592
    yogamom2, I’m sorry you have to be on this site but happy to have you as part of our support group. I’m glad you don’t have to have any nodes removed, if you have read some of the post above we are all very concerned with the aspects of lymphedema. We will be here for you and will send you all the luck and light we can conjur on January 8th.

    Suzanna, I’m glad you were able to enjoy you holiday and not think about your surgery for a couple of days. I do know how you feel, it is scary and the waiting game is the worst. You will be with us in thoughts on Jan 3, and we will be wishing you the best.

    🤗🙏🏻😚
  • Cascadians
    Cascadians Member Posts: 72

    How does time fly so quickly? Prayers for all souls scheduled for January surgery. Been reading lots of past surgery threads and now have a very long list of questions to ask breast surgeon. Did find out for sure a double mastectomy requires an overnight hospital stay.

    Past surgery threads recommend nerve blockers -- 3 of them, pec1, pec2 and back.

    Ask MedOnc ahead of time for: Oncotype, Mammaprint, and Ask for chemo sensitivity testing on tumor cells BEFORE surgery so it is arranged.

  • mactaz
    mactaz Member Posts: 592
    I’m going to have to go back and read up on some of the other surgery threads, I skimmed some but that is all.

    I now have an appointment scheduled for a 2nd opinion on breast surgery options including possibility of lumpectomy. I don’t think lumpectomy is an option but might as well check it out. My biggest concern is the nodes since my BS seems to be inclined to take as many nodes as possible. The Dr I will see did a research paper some time ago on nodes so hopefully he will be better versed and open to a women’s plight regarding lymphdema.

    Once I meet with him I also have an oppointment with my OC to see what other treatment options there are if a sentinel node shows cancer. I want to be fully prepared to tell my BS that she can only take up to x number of sentinel nodes and no auxiliary nodes. I will ask the 2nd opinion doc how many sentinel nodes should be tested because I want as few as possible taken and make my decision. My issue is I have multiple tumors and therefore might require testing of more than 1 node since the tumors were in different areas of the breast.

    Stay strong January gals, we can get through this. Thanks guys for being there.

    🤗
  • alto
    alto Member Posts: 82

    I'm still awaiting a surgery date, but I'll be getting a mastectomy in January.

    I had a quadrantectomy a little over a month ago for Paget's, then a re-excision, and they were still finding cancer cells (Paget's and DCIS w/ early microinvasion). They did a sentinel node biopsy with the last surgery, and said the lymph node(s) look clear.

    I have to decide on reconstruction. At this point, I'm leaning toward not: I'm tired of surgeries and recoveries, and I'm allergic to everything. Plus, I have Paget's, so even though I have skin, I'm not sure I should trust it.

    Trying to think good, strong thoughts!

  • mactaz
    mactaz Member Posts: 592
    Alto, seems like you have been through a lot already. I wouldn’t worry about making a decision on reconstruction now if your not ready, you can always decide to do it later on. Sometimes we just need a break from all this crap we are dealing with.

    Remember we are here for you, stay strong.
  • Suzanna
    Suzanna Member Posts: 10

    Mcataz,

    Thank you so much for starting this thread, I am learning so much. I will be calling my surgeon with a list of questions that I learned about from here.

    Together we are stronger!

    ThumbsUp

  • Lilanj
    Lilanj Member Posts: 4

    Hi all,

    I haven’t posted since being diagnosed in July. I finished chemo on the 14th and will be having a BMX without reconstruction and ALND on January 22nd. Very fearful of lymphedema but from my biopsy at least one node is positive.


  • mactaz
    mactaz Member Posts: 592

    Lilanj, as always welcome to the thread but sorry you have to be here. Seems like there is an overwhelming number of us dealing with possible node extractions and worried about the long term effects of lymphedema.

    I do know of another women who had a positive node and is working with her breast surgeon to limit the number of nodes extracted if possible. She will get a dye injection, and BS will take the marked node that had cancer in it, as well as another four or five likely nodes per the pathway of the dye, and then will wait for pathology. If there is live cancer, BS will go back for more lymph nodes in a second surgery. If there is no live cancer, then she will have spared herself the more invasive surgery.

    Just wanted to share this info with you but you need to do what you are most comfortable with. Take care.