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June 2019 Surgery Support Group

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Comments

  • countdooku
    countdooku Member Posts: 26

    I am 9 days post-op. My tissue expanders are pre-pec. I'm not in that much pain at this point, only taking 1 Percocet once in awhile and I'm alternating between Tylenol and ibuprofen (regular over the counter strength). I've got more mobility in my right shoulder than my left at the moment. I'm able to walk and do normal stuff, but I don't have a truckload of energy yet...definitely more energy than a couple of days ago. I'm purposely taking it easy and not pushing myself. At 12 days post-op, for example, I don't think that I'd be able to assist in preparations for someone's bridal shower, but I could certainly attend a bridal shower. No idea why my right shoulder has more range of movement than the left since it was the right side that they took 3 lymph nodes from. I'm able to do my own hair...am washing it in the sink on my own. However, I just wash and go with my hair and it doesn't require blow drying, curling, or a lot of styling, so your mileage may vary of course!

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Hi happyperidot! I've had a lumpectomy, but I suppose than pre-pect are less painful than sub-pect, because they don't have to cut your muscles. But I think that the pain is very related with the number of nodes removed. A SNLB is less painful than a ALDN. I have had an ALDN 18 days ago and I'm still in pain and my movements are very limited. This is my experience, I hope you will have a better one. HUGS



  • ipenelope
    ipenelope Member Posts: 233

    Happy- I had pre-pec and i used Tylenol right out of the hospital but I don't handle narcotics well. I did not think the pain was very bad at all, which I think is because I had a BXM so all my nerves were gone anyway. I think it would be challenging for you to do your own hair as most PS don't want you to have your arms above your shoulders for 3-4 weeks post op to prevent tearing the internal stitches that anchor the aloderm.

    Maybe treat yourself to a day of pampering and get them done at a local salon??

    Best of luck!!

    Thoughts and hugs to all you cancer kicking women!!!🥊🥊🥊

    ~Katie💗

  • Boobietrap
    Boobietrap Member Posts: 2

    Hi June Group,

    I am having bilateral mastectomy July 1 with TE's. Random question and I know my doctors told me (curse of Che,o brain) but I have forgotten, what is the average surgery time for BMX with expanders? I know it varies per patient per procedure but trying get an estimate on how long I will be under. Would love to hear from you all what you experienced.


    Thanks!

    Boo

  • ipenelope
    ipenelope Member Posts: 233

    Bobbie trap- LOVE the name!!! I think mine took about 4-5.5 hrs.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    Boobietrap (awesome name),

    My BMx with TE placement took about 6.5 hours. They tested the sentinel nodes in OR lab to rule outcthe need for axillary removal.

    Happy,

    My TEs were prepec as were are all of my EX surgeries. None required cutting the muscles. PS just lifted them up from the chest wall.

    Count ,

    It sounds like yor recovery is going very well. I still have limited mobility and PS put me on another month of weight/arm lifting restrictions.

    Have been bad about T-Rexing today so I'm trying to be good tonight.

    Scottie

  • OnTarget
    OnTarget Member Posts: 124

    Hi Boobietrap,

    My surgery in May took a bit longer than expected- I was scheduled to start at 7:30am and I actually finished at around 4pm. I'm not sure what time it actually started, and there was some sort of delay while they cleaned the OR between the SO and the PS, and then the PS took longer than expected. Or at least that is my understanding of what happened.

    I'm very happy with my outcomes so far!

    I had pre-pec TE's placed.

    Good luck!

  • 2019whatayear
    2019whatayear Member Posts: 468

    June is almost over! Cyber hugs to everyone on the mend. I had my BMX w/o reconstruction on 6/25 and went home the next day. Forgot to bring a pillow for ride home so I used the bag of my clothes as my pillow it worked. We stopped on way home from hospital to get pizza set ups (some butcher shops in our area sell pre cooked pizza crusts , sauce, cheese and assorted topping as a set and you take them home and assemble your own pizzas- delicious) I've been averaging 2 of the narco tabs a day along with reg. tylenol . I was able to shower and got to check out my new chest first hand. I'm very happy that when I saw the new me I wasn't sad--that's always a concern when going flat I think. I able to move pretty well all things considered.

    Major bummer for me that they found some cancer in the sentinel node, so they did the auxiliary dissection. Wed. I'll know how much if any more cancer they found and the path on my tumor. I have to keep reminding myself. The cancer that was part of me is now gone. Anything left now just needs to be tidied up. It's kind of weird to wrap my brain around.

    Before I got the diagnosis I signed up for the Noom weigh loss app so I have been using that daily - the only day I didn't track my food was surgery day- and it's very helpful for me to make sure I'm getting good healthy food, monitoring my water intake and tracking my steps. Before surgery I was doing 15,000 steps a day. Right now I'm able to do 5,000 comfortably. I can feel the endorphins come out when go for a little walk.

    xoxo

  • countdooku
    countdooku Member Posts: 26

    I'm getting my drains out on Wednesday! Yay! They're starting to get on my nerves a little bit. I have to call the short term disability people at work tomorrow to confirm that they've approved my time off through 7/19 instead of through 7/2. They initially approved my time off only through 7/2 pending documentation from my doctor, which they should have received a few days ago. It's the one thing that's stressing me out right now because there's no way I could possibly return to work on Wednesday of this week.

    I went to the naturopath for another Vitamin C infusion on Friday and felt like a million bucks afterwards. Plastic surgeon & breast surgeon said that everything's healing well and since I had a double mastectomy, I won't need mammograms anymore.

    I gained some weight while in the hospital...probably all of those fluids they pumped into me. Now that extra weight is gone, so I'm a happy camper. I see the medical oncologist tomorrow.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    2019whatayear: I'm glad that you are doing well. I've had an armpit dissection too and to me that was the worse part to accept of the whole process. You sounds positive and that is good! Now, we have to care ourselves and going on. I wish that the path returns clear for the rest of your nodes. HUGS

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Countdooku: good luck with your drains on wednesday. Don't be stressed, the other things will be resolved. The important thing is that you are recovering well.

    I have had some IV vit.C too. Saddly I had to stopped it because of chemo damage in my veins. But I could feel that energy for a while!

    HUGS


  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    Whatayear, glad your surgery went well and that you are already back to walking.

    Count, sending good vibes for your onco visit tomorrow.

    I have been trying to get out and walk some for the last few days but my step counts are still below 3K. My pain levels have not been great but I still have to go back to work tomorrow.

    Hugs to all,

    Scottie

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Scottie: I wish I can walk 3 k! It's very cold here, I didn't walk out of my house for a while. The pain seems to be worst with cold weather, I have been mostly at bed, or sitting and watching tv. I know I should do something, but right now I don't have the energy. I wish you good luck in your first day al work tomorrow. HUGS

  • DCmom22
    DCmom22 Member Posts: 12

    2019whatayear: You are amazing walking that much already.

    Scottie: If your weather is as hot as ours, 3K is great. I haven't started tracking yet, but I doubt I'm hitting more than 1K.

    Yndorian: send some cool this way. We're happy to share our heat!

    Biggest pain for me-- and it's tolerable--is ab incision, where they took tissue for DIEP flap reconstruction. That, following mx (only right), took 9.5+ hours on 6/25. I got out of hospital yesterday-- earlier than they thought. I get path report later this week probably. I'm so impressed with how pain management was handled.

    Count dooku: Congrats on drain removal (interesting: autocorrect had changed that to dragon removal!!!) How long total will you have had drains?

    Hugs to all.

  • jenni0102
    jenni0102 Member Posts: 14

    My surgery on the 25th went well according to my surgeon. The mass ended up being 2.8 instead of the 2.1 that was expected. The surgeon removed 4 lymph nodes and called on Friday and said that 1 came back with 4mm of cancer (not quite sure what that means...good?bad?) and that she got clean margins on the mass. She said that all of that was good because it all means I will not need further surgery. I meet with my oncologist on July 10th to discuss next steps.

    While my surgeon sounded very happy with the results and seemed very optimistic, I have felt nothing but crushed since she called. While I feel pretty good following the surgery (I was back to work 2 days following surgery) and pain is getting better everyday, I feel devastated regarding the lymph nodes. My original plan was lumpectomy, remove some lymph nodes (that I was sure would come back negative because they came back negative from the biopsy and the surgeon after surgery said she was not concerned because they looked very normal), then radiation, then hormone therapy, then done with this nightmare. Now with one lymph node coming back positive for cancer, I do not know what to expect regarding treatment. I am terrified of doing chemo and I am back to more waiting to find out answers which is just killing me.

    I now just kind of feel like this is never going to end. You all always sound so positive in your posts. Hopeful and optimistic. I wish I felt that way but I hate to say that is not where I am at with this whole thing. I keep praying that I will get there, but if I am being completely honest, I cannot get past being angry and scared. I am just so mad that this is interrupting my otherwise very happy life. I do not want to do any of this. Since this whole thing started back in May, it is the first thing that crosses my mind when I wake up in the morning and the last thing I think about before I go to sleep at night. I cannot get away from it. I have not had one day where it does not consume my every thought no matter how hard I try to not let it. I am sorry to be such a downer, but this is how I am feeling right now.

    Back to what I originally came here to ask, does anyone know if "4mm of cancer" in one lymph node is small or large? Does that mean that I will have to do chemo now? I am just feeling devastated that my original treatment plan that I had financially budgeted for and prepared for in my head may now change.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    Jenni,

    Sending you hugs. I will post more thoughts tonight.

    Scottie

  • DCmom22
    DCmom22 Member Posts: 12

    Jenni ‐ Don't feel bad about sharing your emotions. The diagnosis, surgery and all come so fast, it's almost impossible to come to terms with anything before the next thing comes. I don't know if the 4 mm of cancer in one lymph node is cause for alarm or not. I'm still waiting for my path report, but your MO will be able to put your results into context. For now, hold on to your surgeon's great feelings and optimism. A good result there is huge!!! And know that you're not alone. Ever since I got the diagnosis, I'd have only a millisecond after waking up in the morning before it all hit me, so I understand. It's ok to be angry and scared. In fact, it's good to understand and express those feelings. Vent here, vent to your support people, and see if your breast care team have additional resources. (My team's patient navigator is also a counselor and pointed me to all sorts of support.) Most of all, know that you can get through this, you're loved, and many of us--myself included-- send hugs.

  • ipenelope
    ipenelope Member Posts: 233

    Hi Jenni- Yay that your surgery went well!! Sorry about the lymph node involvement. I had a small amount on one of my lymph nodes and it didn't change my course of treatment. Did your MO not talk to you about the plan for treatment?? I knew before surgery what the plan was for after surgery and the lymph node would determine if I needed radiation, which thankfully I didn't. My MO told me my tumor type determined if I had to do chemo, which I did.

    Hope this helps!! Don't ever feel bad for how your feeling with all that you are going through!! Cancer is hell physically and mentally!! Maybe see if there are resources available for a counselor for you to speak with that specializes in cancer support. Thoughts and long distance hugs to you!!!

    I hope everyone is doing good and keep up the kicking cancer's asses fight!!🥊🥊🥊

    ~Katie💗

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    DCmom22: I'm glad that your pain is tolerable. Crossed fingers for good news about your path results! By the way, maybe your automatic translater is a big fan of Game of Thrones! LOL

    Jenni: you can express your feelings here, we all have done it, I'm a complain machine! The wait is the worse part, I was terrified too, but I'm here after 16 chemos and a surgery, and I will have rads too. It isn't a roses path, but all is doable. BIGS HUGS for you honey

  • countdooku
    countdooku Member Posts: 26

    Jenni0102 - I totally understand how you're feeling. Especially the part where it's the last thing you think about before falling asleep. Feeling mad and angry about the whole ordeal is TOTALLY normal in my opinion!

  • jenni0102
    jenni0102 Member Posts: 14

    Thank you all for letting me vent my anger and frustrations!

    ipenelope, before my surgery, my oncologist said that my plan would be surgery, then radiation and then hormone therapy. He said chemo would depend on the lymph node results. I am just hoping that since it was just one and it sounds like a small amount to me, that chemo is not needed.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Jenni: es solo una idea, pero tu tumor es de grado 1, que es el grado que se ve menos afectado por la quimioterapia, porque crece lentamente, por lo que esta es otra cosa que hay que considerar. Tal vez solo rads and un antihormonal está bien para ti

  • Xtra
    Xtra Member Posts: 10

    Dooku: Yay on your drains! Removal won't hurt! It was so nice taking a shower and sleeping without those drains!

    Jenni: I am feeling you 150%. I said to my SO that I would like to wake up and not think about my breasts. I am still waiting on my surgery path report (today is day 11 post-surgery and tomorrow is my post-op, so I'm pretty sure results are tomorrow) and my thoughts are with you right now. I went to my PS today and we are hoping my healthy breast nipple is not going to die, but it is looking ehhhhh! Every day is a journey right now, let's be glad we have each other. One thing, which is just my opinion...if you have questions, call your doc. Call 10 times a day. I have called those folks for my report every day since last Wednesday do my report and now is not the time to worry if you are annoying anyone. This is your life and your health, find out whatever you need to know!

    Edit: just received a call from the PA: only one node removed and all clean, margins clean, tumor smaller than MRI and US stated, only 1.1 cm. Now on to the Oncotype test. Another two weeks of waiting to see if chemo is in my future. I’ll talk to my BS tomorrow during my post-op. Saw this oncotype predictor textonline https://utgsm.shinyapps.io/OncotypeDXCalculator/ and found it interesting. We shall see.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072

    Jenni,

    We are here for you. This site and all of the boards are the best place I have ever found to express feelings about my diagnosis and treatments. Your feelings are normal. Going through diagnosis and treatment is like going through the stages of grief.

    Do you have access to a counselor, maybe through your treatment center? I was offered counseling when I was first diagnosed, but I wasn't ready to talk then.

    Later, someone, who I did turn to, recommended this book - Breast Cancer - Real Questions Real Answers by David Chan. It's a good read but I confess that I was too afraid to read most of it for months after my BMx. Same with my full path report.

    I agree with everone's suggestions, especially calling you BS to ask questions. Your Onco will also be a great resource.

    In the meantime post here or on another board as often as you feel like it. Everyone is so very understanding and there is always someone whose been through the same or very similar situation.

    Hang in there and hugs.

    Scottie

    I survived my first day back at work - just barely.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Xtra: your results are very encouraging. I hope you can skip chemo! HUGS

    Scottie, congrats! You did it! Like Scarlett O'Hara said: "Tomorrow will be another day" quite a phrase

  • countdooku
    countdooku Member Posts: 26

    got final pathology report a few days ago. I can't remember if I mentioned the results here yet, so I apologize if I'm repeating myself. Darth Boob had a total of 4 cm of DCIS in it, no invasive cancer found. The other breast didn't have any cancer in it, but the report noted tissue changes and multiple very small cysts starting to form. Total of 3 lymph nodes were removed and no cancer found in any of them. There were good healthy margins.

    Saw medical oncologist today. She said that because I had a bilateral mastectomy, I will not need to take Tamoxifen. She also said that there is only 1-2% of my original breast tissue left and that the odds of cancer showing up in that tissue is around 1%. I'll see her on a yearly basis going forward. I see the plastic surgeon again on Wed of this week. That's when they take my drains out and I think I get my first fill at that time.

    I've noticed that my chest muscles are sore in the evening, but not earlier in the day. Every day gets a little better than the one before in terms of energy levels.

  • 2019whatayear
    2019whatayear Member Posts: 468

    great news on your results Xtra! Jenni -- same. This cancer thing is BS and I don't appreciate it! Scottiesmom - hope 2morrow is easier at work than today! DCMom thanks I'm a runner so I'm settling for walking and trying to not over do it. Thanks Yndorian I agree the aux. dissection sucks- that is where most pain and discomfort is for me.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Count dooku: those are super good news! You can skip tamoxifeno and all the SE it causes. Now you can focusing in your full recovery. Congrats!


  • DCmom22
    DCmom22 Member Posts: 12

    countdooku: so happy for you!

  • Xtra
    Xtra Member Posts: 10

    Dooku: that’s amazing news about your pathology! Congratulations! I’m sorry your drains are still in, but they will be gone soon. That’s great about the Tamoxifen. Your news is going in the right direction!

    2019: thank you! I hope the app works well for you. I have used SparkPeople for years and I really like it and it keeps me honest. I went from keto to calories in calories out, and I’m at a good place now.

    Yndorian: Hugs back. You are so encouraging to everyone on this sub. I hope your energy returns, along with your health to 100%.

    I hope everyone is staying strong and keeping positive. Your words on these boards help me immensely. Thank you!