Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

July 2021 Surgeries

Options
2

Comments

  • cgifford7
    cgifford7 Member Posts: 16
    Options

    I am home after my BMX and TE placement. I'm very glad I spent the night in the hospital. It took quite a bit to get my nausea under control. Zofran wasn't doing it and they finally gave me Finergan through my IV and that did the trick. I was on oxygen right up until I checked out to try to get very oxygenated blood to the skin envelopes and the one nipple I kept. I was under a heating blanket, presumably to keep the blood vessels dilated in order to get more blood flow in the breast skin. The nurses taking care of the drains for the first day was also nice.

    The only time pain really got me was right when I was coming out of anesthesia. They got it under control pretty quickly and the pain has been pretty mild since then. I'm still very sleepy, even today I'm not awake more than 30 minutes at a time. Now just the wait for pathology, which my dr. says could be a week. I'm hoping I won't get upstaged from non-invasive to invasive, but I know that happens about 20% of the time.

    Hope all the other July 6 & 7 ladies are doing well!

  • NatureYogi
    NatureYogi Member Posts: 135
    Options

    Hello! Hope all the ladies that have had surgery are doing well and recovering! Take it easy and let your caregivers pamper you. When you feel up to it, let us know how you are doing.

    Saw my surgeon today, surgery is set for July 23, BMX, no recon with lymph nodes level 1 & 2 being removed. I've been seeing lymphedema specialist and was fitted for compression sleeve. MRI looked good, a lot of shrinkage. So moving forward!

    Everyone take care!

  • Oxbury
    Oxbury Member Posts: 9
    Options
    You are all inspirational and I am so, so grateful for the internet and this forum. My brain keeps gravitating to thinking more about the surgery as the date gets closer, when I'm not otherwise sufficiently distracted. If anyone has any advice on managing the waiting period, please let me know. It's less than 3 weeks away but still feels like forever. I mean, it's all probably stuff I know already but I'd like to hear it again. Waiting is the worst.

    cgifford7, thanks for updating us! I hope you're doing okay and the pain is manageable. Would love to hear about any physio you're doing, how well you're sleeping, and any pathology updates when/if you get them.
  • Cepho
    Cepho Member Posts: 2
    Options

    I'm peeking in from August surgeries to wish everybody good results and speedy healing and giving hugs to anybody who needs one. All of us know that there are times we can be strong, but sometimes it's best to turn that strength inward for healing and be at rest. Let a friend or family member be the strong one.

  • cgifford7
    cgifford7 Member Posts: 16
    Options

    After getting through the first two days after BMX and TE placement with minimal pain, it really escalated the evening of day 2. If I lay perfectly still it's not too bad, but if I sit up or stand up it shoots up to a pain level of 8. I had been avoiding the oxycodone, but am now taking it every 4 hours along with the muscle relaxer. The pain was so intense I called the PA on call for my Dr. and she said it all sounds pretty normal.

    Now on day 4 post op and with the drugs the pain is bearable. Hope everyone else is doing well.

  • yasss
    yasss Member Posts: 1
    Options

    hi everyone

    Ive done my mastectomy surgery about 2.5 weeks ago. my pathology comes back with positive margin. I dont know what to do! not sure if my surgeon didnt remove it all . or my chemotherapy didn't help with residue. any how I am so confused weather i should have another surgery or just do radiotheraphy? I like to hear from another surgeon to help me decide, but is going to be hard to find another surgeon willing to helo me after i am done my surgery with diff surgeon..

    I am freustrates and nervous. any thoughts what should I do ? thank you

  • moderators
    moderators Posts: 8,097
    Options

    Welcome all of you, and glad you found us, and each other. Please let us know if we can be helpful!

    yasss, if the margins were not clear, your surgeon will likely want to do more surgery. Do you feel you have a good treatment team?

    cgifford7, so glad the pain is manageable, and really appreciate you sharing.

    Cepho, thank you for the encouraging words! Keep them coming!

    Hugs to NatureYogi, Oxbury. and all the others !! Please do keep us posted!


    Medicating The Mods

  • Ginabena
    Ginabena Member Posts: 1
    Options

    Hello everyone!

    Recent new comer here! I must say in the weeks of waiting I’ve found much comfort in reading everyone stories. I’m 42, premenopausal, and with all the facts I know at this point, I hit the breast cancer lottery in terms of size, type and aggressiveness. While I rejoice a d try to stay focused on those facts, I know we won’t have a full picture until pathology results from lumpectomy/ sentinel nodes and oncotype. I’m scheduled for 7/26. I received a call today from the breast clinic, I have an appt to have a Perl ring 7/23 per onco surgeon request. Not too sure what to expect there, but similar to biopsy, which wasn’t horrible.
    mom not sure how many nodes will be removed, how long I’ll need for recovery (miss work) or how soon after path results I’ll start they next phase of treatment. Obviously if oncotype is high or if node positive, I’ll need chemo. Anyone with similar stats out there that can weigh in and share their oncotype? How many nodes are usually removed? What does recovery timeframe look like??

    Many thanks in advance, this group has been more help than you all will ever know!

  • Imhere
    Imhere Member Posts: 5
    Options

    Reading here, I am wishing the best to those whose procedures sound so much more difficult and involved than mine. Double with no reconstruction on the 22nd. No lymph nodes or anything else showing on MRI, started LCIS, became DCIS. I am feeling so fortunate that it is as easy as it sounds like it is going to be.

    I chose mastectomy because my other option was another lumpectomy. First one in April, not a clear margin. A second one would also indicate daily radiation for 6 weeks, not an option living in a rural area and other damage possibility. Closest center is roughly 80 miles away. I just want to get back to my life and work afterwards.

  • BettyMorgan
    BettyMorgan Member Posts: 7
    Options

    Well darn. I have a positive margins on the primary tumor. Going back in on 7/20.

    Tumors measured 88mm and 33mm. Recommend radiation and chemo.

    Thank you for listening.

  • emotionalpond
    emotionalpond Member Posts: 31
    Options

    Hello All,

    I had my lumpectomy surgery July 7th. Seems all went well. I had a bit of trouble coming out of the anesthetics. I'm not in a lot of pain but its sore. They took 5 glands and the tumor. Now we wait to make sure I have clear margins!!!!


    Jenn

  • cgifford7
    cgifford7 Member Posts: 16
    Options

    BettyMorgan, So sorry to hear about the positive margins. I know the last thing you want to do is go in for more surgery when you're still facing radiation and chemo. Keep us posted.

    Emotionalpond, Congrats on being on the other side of surgery. Hopefully it won't take too long to get the pathology results back and that they say negative margins and nodes!

    I'm now day 6 post BMX and TE placement. Today is the first day I feel good and I'm really fricking grateful for that! The last couple of days have been rough between pain and out of control heartburn/indigestion that has made it difficult to eat. We finally figured out that it was my antibiotic causing the heartburn problem. Apparently I have to eat quite a bit of food 15 minutes before I take the antibiotic and then drink a lot of water with it. I got my pathology results yesterday. Good margins, negative sentinel node, and no invasion (just DCIS). That made my day. I chose the BMX because it was the only way I could avoid the 5-10 years of hormone therapy (according to my onocologist at least), but that was dependent on them not finding any invasion during post surgery pathology. I will have to have one more surgery to swap the TE's for implants and that should be the end of the journey for me. I am hoping that the worst of this recovery is behind me.

  • BoxerLady117
    BoxerLady117 Member Posts: 1
    Options

    Hello, I was diagnosed with DCIS in my right breast on June 9th. It is 4cm in my DD sized breasts and appears to be in the lower/center of my breast tissue. So it looks like it will have plenty of tissue for clear margins. However I don't want radiation for personal reasons so I have decide to get a MX on that breast next Wednesday the 21. They would like to do a sentinal node biopsy but is that really necessary? I am having all of the breast tissue removed and it is DCIS. I just hate messing with my lymph nodes. Just wanted to hear from others that have faced this decision. I don't know if it makes a difference but I am 49. Thank you

    CG

  • emotionalpond
    emotionalpond Member Posts: 31
    Options

    So I had my lumpectomy July 7th and have since received my pathology report back................. I have clear margins so no more surgery! And will be able to move forward with radiation! Other new...... my cancer did not respond to the chemo! My oncologist is very confused as to why!!! All the reports say I have a grade 1 tumor. To her it makes no sense! So going forward they will have to treat me aggressively for the next 5 year. I will start on a ovarian suppressant shot right away and a anti hormone blocker. I may ore may not have to have more chemo. My oncologist is going to present my cause to the board and see what they recommend. They will continue to monitor me closely over the next 5 year to see if there is a reoccurrence or not. I just wonder if this has happened to anybody else?

  • cgifford7
    cgifford7 Member Posts: 16
    Options

    Boxerlady117, they will do the sentinel node biopsy because once you've had a mastectomy they lose the ability to go back in and do one. Your preliminary diagnosis is DCIS, based on the testing you've had done so far. You won't have a confirmed final diagnosis until they get the pathology reports back after surgery. My understanding is that about 20% of DCIS cases get upstaged to invasive after surgery. A biopsy only takes tissue from a specific point, so it cannot necessarily determine that there is no invasion in an area not biopsied. If that happened to be the case, you would want them to have the sentinel nodes in order to check them.

    That being said, I had a double mastectomy 8 days ago. My initial diagnosis was also DCIS and post surgery pathology confirmed that it was only DCIS, the margins were good, and the one sentinel node they took out was clear. The mapping dye only lit up one node for me, so that's all they took. In a weird twist of fate, my sister was diagnosed a month after I was and had surgery yesterday and she only had two nodes light up, so that's what they took. I know it can be up to 5, but I have no idea how often that happens. So far I have had zero issues with the area they took mine from.

  • NatureYogi
    NatureYogi Member Posts: 135
    Options

    Looks like Boxerlady and Imhere, Betty Morgan going in for surgery next week! Good luck to you all, speedy recovery and clean margins. I have pre op Monday, surgery Friday the 23rd, getting nervous, but ready to move forward. My two sisters are coming to take care of me while husband is in Iceland, worked out better this way!

    For the ones that are recovering from surgery, get plenty of rest and nourishing food. Hope you all get good reports, the waiting for any results can be nerve wracking! Keep us posted on results and next steps.

    For nymph node removal, I know they will be taking level 1 & 2 right side out. I have been fitted for compression sleeve, I have 25 to 50 percent chance of developing lymphedema in arm. I need to get prepared for this with daily exercise, yoga, rebounding or whatever else I can do.

  • Esther01
    Esther01 Member Posts: 229
    Options

    My surgery was June 10 and radiation is next.

    Ginabena and Emotionalpond, according to my pre-surgery ultrasounds, I had two involved nodes, but five lit up during surgery, so I lost a total of 11 nodes! 5 positive, 6 clear.

    A month later, I'm doing great. Full range of motion, no pain. Breasts still tender to the touch and still a little numbness in my underarm, but feeling there seems to be coming back. Little risk of lymphedema with SLNB. I got a compression sleeve for air travel and had my arm measured for baseline after surgery.

    My SO gave me a brochure for a lymphedema device that reverses it if caught early. It looks like an inflatable cuff for the arm. I will definitely look into that.

    But no chemo. My Oncotype score was 17 and stated, "No benefit from chemo." All I did prior to surgery was neoadjuvant hormone therapy (tamoxifen + zolodex). Even if they suggested chemo at this point, I would decline. Got great margins and 6 clear nodes after the first five.

    I'm also stopping zolodex but continuing tamoxifen. I read a study that tamoxifen + zolodex yielded no better reduction in recurrence risk than either alone. The difference was statistically insignificant. I would rather keep my hormones for the wealth of long term health benefits while blocking cancer cells from using them. My cancer wasn't caused by hormones.. but it sure took advantage of them.

    Even though I'm confident they got it all, I will do radiation to catch any cells still surfing my lymphatic highway. Plus, I've made huge changes to my diet and health in these six months to make my body hostile to any future cancer growth. But no chemo.

    Low carb, no sugar, no fructosamine (I use Juice Plus instead of all fruit), drinking enough water (half my body weight in lb in oz), digestive enzymes with every meal (imperative if you're blood type A), systemic enzymes on empty stomach 2x/day to carry away cancer cell debris and reduce inflammation. Etc.

    I'm planning to protect my healthy cells from the onslaught of radiation by continuing 2x/wk high dose IV vitamin C at 50g, which is not the same as dietary C supplements which could get in the way of radiation benefits. A 2020 study showed that IVC twice weekly boosted the effects of radiation on residual cancer cells, lowered inflammation and correlated with better long term survival. That study can be found here on breastcancer.org.

    I'll also use those lotions and creams. I'm going to use a PEMF mat one hour before radiation to enhance beating up any cancer cells left. It arrived yesterday but I don't know how to use it yet.

    Praying all goes well for each of you with your surgeries and aftercare!

    Blessings,

    Esther





  • Beekc
    Beekc Member Posts: 31
    Options

    Hi. I had a SM in April this year. I’ve recovered very, very well. I had no reconstruction, nor chemo/radiation. I’m following how you all are doing this month and to watch for a post from a friend. I had 7 sentinel nodes removed and gratefully they were all clear. I think having that many sentinel nodes is unusual. You will be overjoyed with the good results you experience next month. I’m enjoying your discussions

  • emotionalpond
    emotionalpond Member Posts: 31
    Options

    I just came back from the surgeon and now they are going to actually go back in and take all the lymph glands under the arm pit as a cautionary measure. I actually get this surgery July 26th. I'm kinda nervous about the pain after since this surgery wasn't too bad. Hopefully they will all be clear! I guess the reason why the surgeon decided that was because there was 2 positives out of 6 glands taken. The oncologist was the one that said no more surgery but my surgeon veto'd that!!

    It's ok :) I will be ok :)

    • BettyMorgan
      BettyMorgan Member Posts: 7
      Options

      Good evening! Home from the resection of my superior and anterior margins. Praying they got it all now.

      Feeling okay. Ready to head to bed for the night. Pain is less than original surgery but my arm pit skin hurts so much. Looks like a rash. I put a dry washcloth to try and soak up anything that might be irritating it.

      Received my approvals for the PETCT and port placement. So my next focus will be that.

      How is everyone doing? Feeling?


    • Oxbury
      Oxbury Member Posts: 9
      Options
      Surgery in less than 6 days and I'm simultaneously feeling very anxious and okay about it. I guess it's the uncertainty that gets me more than anything - I think the most difficult part will be waiting the two weeks from the surgery for them to tell me the pathology results and if they found more cancer. Part of me is expecting there to be nothing other than the small amount of DCIS they already removed earlier this year. Part of me would not be at all surprised if there was more than that that they found, or if they had to remove nodes. I've had a lot of operations to remove tumours over the years due to having PTEN syndrome, and several of them were deeply unpleasant experiences that left me with mild PTSD. I wish I had someone IRL that I could say yes, a big part of me is absolutely bloody terrified this will all go terribly, and have them understand why I feel like that. To have someone else who understands this deep, lizard-brain level of flight or fight adrenaline that's happening right now. But at the same time, I have this feeling that it's all going to be okay anyway because I've survived every single one of my worst days in life. If I can do that, I can survive anything. I think just giving myself credit for my capacity to endure is what will get me through this.

      On the more practical side of things, I am a little worried that I will need more than 3 weeks off work. I don't have enough leave accrued to cover the costs for additional leave and would have to take it unpaid, which would be a big dent in my finances. I don't really know what to do about that because I've sort of been avoiding thinking about all this as much as I can, and my family doesn't have the capacity to support me financially. Might have to ring the local cancer council for advice, unless anyone here knows how things work for that sort of thing in Australia.

      Hope everyone is going well and those who have had surgeries are recovering well.
    • barbojoy
      barbojoy Member Posts: 47
      Options

      @cgifford7 Thanks for sharing about the overnight at hospital. My surgery is 07/28 and during pre-op Thursday, the surgeon asked if I wanted to stay overnight or go home and I asked to stay. I presumed that I could use all the help I could get. I would prefer to stay for several days for oxygen, IV meds and help. Hope you are well!!

    • barbojoy
      barbojoy Member Posts: 47
      Options

      @cgifford7 - What part of your body hurt after day 2 (pain level 8)? My plastic surgeon told me that w/ DMX (skin sparing, but not nipple sparing) that all of that part would be numb - no nerves, etc. So, I'm curious if you know what was causing the pain and was it a stabbing type pain or a burning/stretching type pain? Sorry that you had it and I hope I'm not prying too much- just trying to ready myself for next week and I prefer to prepare for the worst.

    • barbojoy
      barbojoy Member Posts: 47
      Options

      @oxbury I have DMX scheduled for 07/28 and I'm terrified. When I imagine voluntarily walking into the hospital to have them mutilate/amputate my breasts, I visualize running fast in the other direction. I am mad that this is the best that science has come up with for women. I am heartbroken that my beautiful breasts are forever going way and that I'll have a numb, unnatural mess for months until after chemo. I am scared that they'll discover lymph-node involvement and that I could already have this monster loose in the rest of my body. I am nervous that I will not be able to handle this-- emotionally. Before the pre-op appointment, I could think of this cancer in a more abstract way. Now, it just makes me cry. I suppose I am going through stages of grief/change- maybe you are as well... I will try to post once the deed is done, like so many others here have.

      Best of luck to you next week!!

    • cgifford7
      cgifford7 Member Posts: 16
      Options

      Barbojoy - It was a stabbing pain in the lower outer part on my non cancer side. The physician assistant I spoke to that night from my plastic surgeons office was pretty certain it was related to the tissue expander. I definitely had other areas of lower pain and discomfort that I knew were due to the TEs, but the stabbing pain scared me because I thought I might be having a heart attack. That particular pain subsided each day and was gone by about 3 days after it started.

      I am just past two weeks now and am pretty much 100% pain free. The second set of drains came out on Wed at my two week appt. Now the hard part for me is to continue to follow directions and not overdo things with my upper body. My PS won't do a first fill in the TE until a month, and that is only if the incisions are healed.

    • CR246
      CR246 Member Posts: 2
      Options

      Thanks for sharing all your experiences!

      On July 14 I had a skin-sparing mastectomy on the right, with 3 nodes removed and an expander put in at that time. Still waiting for the post-surgery pathology, but my surgeon said it went well, and recovery was a lot easier than I anticipated (I only took Tylenol for 10 days, and mobility and range of motion were never bad). But coming up to the end of week 2, I am still not below the 20 ml/day cut off to remove the drain, so I am still on antibiotics. I thought I would be done with that by now...anyone else experiencing that?

      I put the TE in there essentially to buy time, I have some genetic testing results coming in soon. I struggled with the decision about reconstruction, but if it becomes a DMX, I can still change the reconstruction plan - and as it turns out, I am much less freaked out being lop-sided than I thought I would be, even when the plastic surgeon changed the dressing!


    • MegOh
      MegOh Member Posts: 10
      Options

      emotionalpond Hi! I see you are starting ovarian hormone suppression. Are you going to take Lupron shots? I've been on it for over a year, so let me know if you have any questions! It's a little rough in the beginning, but then totally mellows out (at least for me).

      Also - did you have oncotype testing prior to Chemo?

      All the best!

    • Beekc
      Beekc Member Posts: 31
      Options

      hi. I had a similar diagnosis to yours with surgery with no chemo or reconstruction on April 7th. I’m well beyond retirement age. So my “beautiful breasts” long ago went south! However let me encourage you that it might be time to consider it a new way: your breasts were under attack and they did not sufficiently fight back. They were not your friend! I had to reframe that love of what “was” to a distaste of what “was” and a pleasure with removing the invaders that stowed away in the breasts. It did help me to emotionally part with the “offensive” tissue and to see it that way. You will be surprised with how well you do once you are admitted. I love the mountains that you see in CO. There was a post on FB that read, “God flattens mountains to build our faith.” I had to laugh! Flattens them is sure right!, (I don’t believe that’s exactly accurate scripture, but it’s funny!) So be hopeful because in a month so much of this uncertainty will be better. Sending my best wishes and prayers for more faith in your Creator

    • NatureYogi
      NatureYogi Member Posts: 135
      Options

      Hello all, I had my surgery Friday July 23, everything went well and I stayed one night. I was glad that I stayed the night to be checked on, even though I didn't get lots of rest. When I got home I slept really good, not in too much pain. I've taken a shower using the hand shower head to rinse lower body, arms, back, legs and face. BS called today with path report results, he was happy we got results back in less than 2 days. Complete pathological response, no evidence of residual cancer and no evidence of disease in lymph nodes as well! I still need radiation, but grateful I got a good report. I go for post op check up this Thursday.

      If you can stay one night in hospital, you should do that. I started walking around house by day 2 and feel really good.

      Hope you are all doing ok!

    • emotionalpond
      emotionalpond Member Posts: 31
      Options

      Hi MegOh

      I think I will be going on Lupron but am not too sure yet. There was no oncotype testing before hand..