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August 2020 Surgery Group

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13

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  • Ekojio
    Ekojio Member Posts: 20
    edited August 2020
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    ok I an so drugged up right now after diep on tues. Eyes stay open for about 5 seconds if that. I will try to enter as much as i can..

    General made me dream crazy and waking out of that dream took awhile. Ok phone keeps going to screen off because i fall asleep lol

    I did so much research and honestly wasn't my experience. So my breasts came out perfect. Which is great so dont need revisions to fit them. Everything healing right. Blood vessels attached fine. They have to come u/s them every hour. Bottom incision I believe is fine but they worried about breasts and how they sound.


    So..

    Surgery was 15.5 hours. Osmosis or whatever they called it that two vessels in left breast wouldn't attach is one reason it took longer.. also I had a umbilical hernia that plastics was able to correct that. I got into chair I believe the next day. Wednesday and Thursday ive walked from bed to recliner to toilet and back to recliner. Now with it being night I go bed⁷ to toilet. Im in so much pain... on pain pump with diaudid.. if spelt right. 10 mg perc for break-through pain I've been getting. Pretty much under control unless I'm moving. Staying hunched over for transfers. Icu for 3 to 4 days or long longer if needed. Regular room after for another 3 or 4 days. This room was really warm starting off to keep vessels alive and connected but they are doing well so now just warm but not to make me sweat.

    I dont regret this at all. It is so hard and painful but as I've stated before to people... if i ended up with cancer due to high risk I'd do chemo and radiation and loose my hair and maybe be right at surgery anyways so no i dont regret it.


    Courtney

  • clarrn
    clarrn Member Posts: 160
    edited August 2020
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    Its day 5 post-OP. Pain is manageable but it is a long recovery process and I am so impatient. Had a big migraine yesterday and that was not fun. I have no energy and I am aware of each micro movement my arms and core make. I am mostly moving around by myself but do need help with getting up off the bed (my short stature doesn't help, at home I have a power lift recliner that will help so much). I did stairs and a long walk with physio yesterday. It is getting easier and they started me on iron for my anemia. I am losing a tonne of hair (like a post pregnancy hair shed) but I had cut it into a lob so its not noticeable yet. My doctors have been amazing, hope to get 1 or 2 drains out tomorrow. I can shower even with them at home. Home tomorrow and I can't wait to see my family ♡ We are stronger than we know.

  • dani444
    dani444 Member Posts: 215
    edited August 2020
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    Ekojio- I am glad you are pleased with the outcome from your DIEP. I am sending good thoughts that you can continue to have good pain control. It sounds like you have a great team behind you.

    Clarrn- 5 days post op and you are moving around by yourself 💪🏻 . I understand being impatient but relax and let others care for you. You deserve it. Imagine how great that first shower at home is going to be! So glad you also have a great team. It makes such a difference. I got a little emotional at my PS follow up today while thanking her for being so supportive with my decision to have a PMX on my remaining breast. You are correct, we are stronger than we know.

    So thankful for this amazing community 💙.

  • TeddyDog
    TeddyDog Member Posts: 3
    edited August 2020
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    Hi All! I just had my stage 2 revisions with Dr Cabiling on 20th August. Everything went well, just struggling a bit with 4 drains & the compression suit! I waited just over a year from my BMX Diep Flap before my stage 2 as I wanted to lose weight, I managed 35 pounds. I go back for nipple reconstruction next year. We decided not to do it in this surgery as I wanted to get my foobs from a 38DD to a C’ish with uplift and didn’t want to guess nipple placement. I’m feeling really positive with what appears to be fabulous boobs at the end of the tunnel! I’m 53 with 4 kids and sending positive thoughts and strength to all my sisters who are on this shared but individual journey.

    If anyone has any queries re my experience with Dr Cabiling at NOLA, please feel free to message.

  • karainla
    karainla Member Posts: 10
    edited August 2020
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    hi everybody...I’m still here. I had a relatively easy time with the surgery. It went pretty long, which was hard on family, but I slept through it. I’ve always had a high pain tolerance so have used almost no narcotics. I came out of surgery Friday evening, walked Saturday and got permission to come home on Sunday. My surgical team are all thrilled with my recovery and the cosmetics. I’m sleeping in an overstuffed chair with an ottoman so I don’t risk rolling over...my cat won’t talk to me because I smell funny...she looks like she wants to come over but when she gets close she runs away.


    my biggest issue is psychological. I’m so worn out just walking around the block, I’m frustrated by having to wait out my recovery. Just writing this makes it seem ridiculous, I know I’m lucky, but patience in this area is not my strength. I’m going to try to have an attitude adjustment today...might be a bit easier as the weather is also a bit cooler.


    I hope you all are having a safe and restful weekend

  • clarrn
    clarrn Member Posts: 160
    edited August 2020
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    karainLA- so glad your recovery is going well. It is hard to rush into doing everything but it us SO important to give your body time. I am getting friends to send me their book lists, shows they love, podcast recommendations to keep me on the couch. And I am hoping to get around to making some of my endless photo files together to make a photobook or two.

    I am getting discharged today *happy dance* !! I got my doppler radar wires trimmed and will lose 2 out of my 4 drains today. Shower and cuddles are on my priority list for today. I can't wait to see my kids.

  • clarrn
    clarrn Member Posts: 160
    edited August 2020
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    Slept 6 hours in a row for the first time since my surgery. My recliner cushions were too hard so I ended up taking up most of the bed with my wedge pillow plus 4 regular ones. I slept like a baby, but my hubby didn't get much space. He says he doesn't need it.
  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    DAY 8 POST OP- feeling a bit better every day. Able to sit up for longer periods and do more things like put my dishes in the dishwasher. I can get out of bed myself but my husband still helps to protect my core. Almost able to stand up straight but after 2 large babies I had quite a bit of extra skin so they didn't have to pull me as tight. I am taking fewer pain meds (tylenol and advil). Still taking a long afternoon nap. My parents are still here, helping with the kids and doing all the cooking for another week, so I am spoiled. How is everyone doing?
  • DynamicIris
    DynamicIris Member Posts: 3
    edited September 2020
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    So glad to see this group. I was diagnosed on July 1st and finally had a lumpectomy on Aug 19th and then reconstructive surgery on Aug 25th. I wish I had seen this group during the last two months but was so tired of working (I'm in Human Resources), my dog had to be put down and then there was a hidden leak in my kitchen and had mold mitigation for the last month. Breast Cancer seemed to be in the background as I wasn't in pain.

    I think I was so exhausted that it was a relief to get a break from 'life' and have surgery. Hoping I would sleep and be 'out of pocket' for a day or two. I am single so went to my parent's after first surgery and then my sister's after 2nd surgery. My house is torn up and luckily my family is helping to rebuild kitchen and other damaged areas.

    So, recovery has gone well and my results of margins and lymph nodes were benign. I struggle with depression and fatigue even without cancer so it has hit me. I always have issues getting to sleep. Having to lay on my back and wearing the surgery bra have been my biggest complaints. I'm starting to get used to my new sized breasts. I had oncoplastic surgery which meant I had a reduction and lift. Didn't realize how strange it would feel to have smaller breasts that don't feel like mine. I know it will take time to adjust. I keep hearing the plastic surgeon's statement, "Hope you like the size. They are good for your body type. Much better than having your breasts down to your stomach." I know he didn't say that to demean me but it has bothered me. I am a plus size, curvy woman. Glad I can vent my feelings here!

    I have loved reading the comments, gratitudes and well wishes for recovery! Healing thoughts to you all!

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    Drains out!!!! What a relief:) I am having some trouble with the site, it only works till comment if I use plain text editor. Anyone else?
  • robinorbit
    robinorbit Member Posts: 23
    edited September 2020
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    I heard from my breast surgeon today he received my pathology report, showing that they found a 1.2 cm IDC/DCIS which was removed, margins were negative, and both lymph nodes were clear. I feel very, very fortunate.

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    robinorbit- great news!! Hope recovery goes well, do you have a treatment plan yet?
  • robinorbit
    robinorbit Member Posts: 23
    edited September 2020
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    Thank you, Clarm! I'm glad to hear you got your drains out today--that must make such a difference!

    No treatment plan yet. I haven't even had post-op with the surgeon yet--that's next week, 9/8. He just called me so I wouldn't have to wait another weekend to hear.

    I have not yet even been referred to an MO or RO, so I imagine I won't be able to even meet with them for several weeks still. I presume I will be recommended the regular course of radiation and then an AI for 5 years.

  • Ekojio
    Ekojio Member Posts: 20
    edited September 2020
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    Drains out definitely must be nice. My right breast one keeps pulling but I guess mainly because its shorter tubing than the left side. I have my post op appointment on the 11th so I hope the drains stop draining so they can come out. Basically its just the abdomen ones that drain but even if they take out breast ones ill be happy. Im currently in rehab and I guess dept of health mandates quarantine for 14 days once in nursing home/rehab so basically stuck here til the 15th. I can walk up and down stairs now but they want me be strong overall before sending me home where ill be alone most the time.

    And yes I have trouble with regular text editor. It freezes when I type.

    Its a good thing robinorbit that a lot of it was removed during surgery. I had my path report and everything came back neg which was good to hear. They didn't test nodes but thats because I didn't have any cancer prior to surgery but still good to know everything came out clear even though scans showed nothing. Keep us updated
  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    Got my pathology report back this am, finally! Part good news, part not so good news. Rt breast had radial scar with some anomolies but no cancer. Lt breast, took 3 nodes, all were clear. Clean margins so it looks like the got it all. Bad part is tumor was 2.5 cm NOT 8mm like they had expected. So I am assigned Stage II, grade 2.

    She will do my referral to MO when I have my post op visit. She wants MO first so he can order OncoType and verify that I will not need chemo, then he will send me to RO once the treatment plan is clear.

    So that is mostly a relief. NOw to research stage II and success rates.

  • AnnC2019
    AnnC2019 Member Posts: 93
    edited September 2020
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    Hi,

    Looking for advice. I got out of the hospital a week ago due to “red breast” (i think that is what it is as there was no definitive answer) syndrome and I was given a 5 day supply of singulair and prednisone. The redness subsided but now that I am out of pills it is coming back. I was disappointed in that no one followed up with my care so I called early this afternoon to find out if I can get a refill on the medication to avoid it getting red again. The PCA said she would speak to the doctor and call me back. Well, it is 6pm before a long weekend and no call and no medication. Honestly not sure if I need to find someone else as I’m starting to think they are too busy or don’t care. I would be slated for my exchange around end of October if I can keep this from worsening. I didnt reject the other treated side so not sure if the allergen caused it. I didn’t have an infection as everything else was normal and my ultrasound looked fine. The vancomycin ruined my stomach and I am going on six days of diarrhea Am I being over sensitive to expect a follow up call after being in the hospital five days or a response to medication request? On top of that, the doctor transitioned to private practice and I can’t get an answer from them regarding insurance.


    Thanks.




  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    AnnC- Hi! So sorry you are going through this. I am Canadian so not sure what you should expect there, but here I would not be expecting a follow-up call. If, like you, things were getting worse again I would be the one to call and notify them. However, my surgeon's office hours are 6 am to 2pm so I know that if I don't call by about noon the day before the weekend I am out of luck to get advice from own doctor. I was told that after hours or on weekends if I ran into issues that I should call the plastics on call for her hospital. I don't know if that advice would be the same for your Dr's practice. Hopefully they figure this out soon!
  • dani444
    dani444 Member Posts: 215
    edited September 2020
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    arabiansrock- great news on the clear nodes and margins. Sorry it came back larger than anticipated. I hope you get a low oncotype! I am curious about your staging, I had a 4.8 cm tumor, grade 2 with positive nodes and my doctor said I was stage IB.

    I hope everyone is healing well. I am tired today and a little sore if I move around too much. I did power through and go for a walk today. The weather was perfect.

  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    Hi Dani thank you for the good wishes. I hope I won't have to wait too long to get into MO. Also eager to read full path report because like you, even tho size would say stage 2, I suspect I will end up staged as a 1a.

    My lt breast is still so sore and uncomfortable. It just feels heavy and "wrong". And the sentinal biopsy area is still swollen and just plain sore. My right side that only had sclerosing lesion removed is great and basically feels totally normal unless I bump into something, then it is still tender. I have to admit that I am wondering if I should have stuck to my guns and said I want a bmx. I really don't like the idea of radiation, and if I'm still this uncomfortable almost 3 weeks out, well could the mast really be that much worse?

    Just a little down this weekend, expected better healing on lt side. I normally heal quite well. WEather here is 110 degrees this weekend. being sticky and sweaty does not help, lol.

    take care everyone and best wishes to all for continued good healing!

  • robinorbit
    robinorbit Member Posts: 23
    edited September 2020
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    Hi Arabiansrock

    I’m so sorry they found a larger tumor than anticipated. (Mine also was almost twice the expected size—but still under 2 cm so stage 1.) It is good news that you had clear nodes and margins, and no tumors on the right side! I hope you have post-op soon so you can discuss your pain with your surgeon. I still have quite a bit of pain, especially in the underarm, but also aching in the breast—which my surgeon said is normal.

    Let us know how you’re feeling today. Wishing you continued healing.


  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    I had my post op visit today. Surgeon was very happy with healing. Just like RobinOrbit I have underarm pain and aching in left breast. My surgeon says that most of the discomfort is from the nerves that got cut doing the SNB. She said it will get better, eventually. But she said it would take "a long time" before it feels better.

    There was one finding on my path report that she had not told me when she called on Friday. It said "equivocal for lymphovascular invasion". I am not sure how this will impact my treatment plan (if at all). Next up is MO. Hope I don't have to wait too long to get in. Robin, I bet we are being sent to the same MO, it looks like there is only one in that group. My BS said that she really likes him, he takes time and explains everything, and is willing to engage in discussions about options.

    So I guess a little break to just live now before any more decisions have to be made. Now if only the smoke would clear out and the fires get put out (Calif is burning), then maybe we could go outside and enjoy whats left of summer.

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    Post-OP follow-up yesterday. Surgeon happy with how I am healing. I notice more symmetry issues now, my radiated side is healthy but definitely firmer and about an inch higher. Surgeon is confident that when it softens that it will naturally drop into alignment and if not we will do a revision. My implant capsules, scar tissue, lump, and enlarged lymph node all came back benign so I am relieved. My parents leave today, and I am so glad to have had the extra help, but it is time for them to get home.
  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    hey Robin - have you gotten an appt with MO yet? I had to call, they never called me, they put me a whole month out, Oct 14!

    Is it normal to wait that long for MO appt after surgery? I am already 3 weeks post surgery, this will put me at 7 weeks post surgery before even seeing the dr. Then he has to order OncoType, and it will be the end of Oct at the earliest before we get that back. So I will be 9 to 10 weeks post surgery before we even can develop a treatment plan. This feels scary to me. I don't want anything to start growing again while waiting. And I REALLY want to know if they are going to suggest chemo or if I can bypass at least that nasty business. Would also like most of my treatment finished in 2020, otherwise I will rack up thousands more in bills next year because I will have to hit catastrophic limit AGAIN.

    Please someone talk me down and help me get calmer about waiting this long to see MO.

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    arabiansrock - it's been 6 years so the details are foggy but after my bmx it was 2 weeks later at my surgical follow-up that my surgeon first read that I had a lymph node involved then made an appt with my oncologist which took 3 more weeks to get. I started chemo 6 weeks post-op and I wish we had waited longer. My wound healing was poor and I still wonder if I would have avoided lifelong lymphedema if my body had a couple more weeks of healing. I know that my oncologist said we would wait another month to freeze eggs/embryos if I wanted but we chose not to after meeting with the fertility specialist. (I wish we had frozen eggs in retrospect). All that to say that it does seem like your wait is on the longer side, but definitely not a dramatic delay. Hugs! The waiting is the hardest part, and you will feel better when a plan is in place. In the meantime, focus on healing and eating healthy to put yourself in the best possible position for further treatment.

  • robinorbit
    robinorbit Member Posts: 23
    edited September 2020
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    Arabiansrock,

    I haven't heard yet from the MO, and don't know even who it is. I guess I should figure it out and call. But I have consult with RO Monday. Surgeon did mention MO would likely request Mammaprint testing on my tumor and that radiation could be planned now but would not begin until they confirm I don't need chemo based on the Mammaprint, because they would have to do chemo before rads if so. So I'll face a delay as well.

    I would think MO could just send tissue out for Oncotype testing now rather than wait to meet first and then order testing and make you wait more. Could you could ask that the testing be done now?

    Have you mentioned your concerns about the delay to the MO's office? Maybe they can put your mind at ease or talk to you about taking AIs while you wait.

  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    Hi Robin, I have consult with RO on Monday also. I'm at 10:30, when are you? there is only 1 MO if you are going thru Sutter, PM me and I can give you his name and number. I asked about sending OncoType out now while waiting for appt and they said NO you are not established as a patient until we see you. Ok then, but you don't want to see me for a month!

    I suspect we will be doing our treatments along very similar time frames. I am thinking radiation will start sometime in Nov, assuming no chemo needed. I am going to try my hardest to forget about cancer and just enjoy the fall. If the fires ever get put out and the smoke clears out. I didn't think there was this much area left to burn after the last two summers of humongous forest fires!

  • clarrn
    clarrn Member Posts: 160
    edited September 2020
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    So 1 of my doppler wires is stuck in me. They forgot 1 in and said I could just pull it out (I live 2 hours away from the office). I tried and it felt stuck and it actually broke by the knot. Then I went to the walk-in today and it also snapped, closer to the insertion site. The doctor there taped it and I guess I have to notify my surgeon on Monday. Not sure how they will get it out. Hope I don't have to have more surgery :(

  • arabiansrock
    arabiansrock Member Posts: 40
    edited September 2020
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    Well I saw the RO today. I really liked her. Straight talker, willing to answer questions and explain why she disagrees with something. I will be having my radiation prone, with boob dropped through a hole and getting zapped that way. This is meant to minimize (even more than the deep breath holding) exposure to heart and lungs. It also apparently allows her to radiate chest wall safely. 20 treatments total. 16 prone, last 4 flipped over and getting boost to tumor bed. Have my planning visit on the 28 th for the ct scan, tattoes, practice lying in the pronate cradle. She then wants to start radiation 1-2 weeks after that.

    I don't see my MO until Oct 14. I want to try and not start radiation until after I have that visit with him. I am very worried about tolerating the AI's, and want to have a conversation about "just in case I can't do them, should we do chemo first". The RO would say def no chemo. She told me I will just have to manage to tolerate either AI's or Tamoxifen, especially since my ER status is +++ (100%), and PR is ++ (90%). But I still want to have the conversation.

    I also asked her about the Mepidel or Mepilex Lite films, and she said she only uses them if the skin starts to break down, then she will have you use it. Her statement was it concentrates xray more on the skin. I have read at least 1 study that disagrees with that statement but...

    I also asked her about the pentoxyfilline, and she said that she only uses that when there are cases of excess exposure such as when someone had whole breast radiation and they had a recurrence in the nodes above the breast and so the areas of radiation will overlap. She said the drug has side effects of its own, so she prefers to only use it when necessary.

    She said best way to keep skin good is of course moisturize alot, and keep skin dry, especially in the IMF. She says that is where she most often sees skin breakdown.

  • robinorbit
    robinorbit Member Posts: 23
    edited September 2020
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    Arabiansrock—Glad you liked the RO! I did, too. Sounds like our radiation treatment plans are essentially the same—we even have simulation the same day.

    She did say that MO already ordered my Oncotype, so I'm sure yours was ordered as well—at least we won't have to wait after RO appt for that. You def should get your questions answered by MO before starting rads—that absolutely makes sense!

    I definitely feel better having a treatment plan, even if it's not set in stone

  • dread2020
    dread2020 Member Posts: 36
    edited September 2020
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    Guess with a stretch I can post here. Had lumpectomy 9/8 and was told on waking up that the hottest sentinel was negative based on test done during surgery, and margins looked great. Unfortunately got a very different story from pathology: both of two nodes tested were positive, and while margins were technically clear (figure that one out) another 1mm IDC lesion, not from the primary, was found in the excised tissue. I know this isn't the wailing wall, but I'm definitely here to moan.