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September 2019 surgery support group

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  • arizonaboundgal
    arizonaboundgal Member Posts: 38

    Just found this article regarding lymphedema post surgery.

    https://ascopubs.org/doi/full/10.1200/JCO.2015.64....

  • HopeWins
    HopeWins Member Posts: 81

    hi Trying2staypositive - wanted to tell you about my snb. I know it's mental, but I was more frightened about the boob injection than the mastectomy and could not understand why they wouldn't just do it all while I'm under. This is what I understand now:

    There are two injections. The first is a tracer fluid. This needs time to make it's way through the breast and to the sentinel node/nodes. This is why some women do night before/morning of surgery before the actual surgery. In my hospital they mix the tracer fluid with lidocaine. It hurts like any other lidocaine shot - some burning/stinging - but is bearable. I think I had two or three injections in the quadrant of my breast with cancer. There is no mammogram situation when they're injecting, so to me it was already better than my previous biopsies.

    The second injection is dye and this is done during surgery. A Geiger type detection device is then used to trace the radioactive dye to the sentinel node/nodes so they can be removed for preliminary biopsy during your surgery. Final pathology is done with the rest of your breast tissue.

    Hope this helps!

  • HopeWins, thanks so much for the wonderful information and explanation! I thought that was what my surgeon said also-there would be two sets of injections one later for the dye when I was asleep. Then I thought maybe I misunderstood. It makes sense now. He warned me I could wake up sort of blue from surgery for 8 to 12 hours in the area where he injected. Did that happen to you?

    I am not sure if they mix the tracer injection the day before with lidocaine or not. The hospital told me they don't use any kind of pain medication. But she may not know what the radiologist mixes in. She was just the scheduling person. She admitted it is painful for some women yet they let you drive home from there. My tumor is not super close to my nipple and is in the outer quadrant. However my surgeon made it sound like they inject one injection each side through the nipple. That part is what is scaring me the most I think because it sounds awful painful. I will also have to have it done on both sides since I'm getting a bilateral mastectomy and he's doing a SLNB on both sides for good measure. (Probably because I have lobular cancer which is sometimes on both sides even though it doesn't look like it is bilateral at this point from the MRI).

    How does the radiologist see where to inject if they dont use mammography?

  • purple-flower
    purple-flower Member Posts: 74

    Hi all

    Well - I had the damn MRI biopsy today. Wasn't terrible but definitely not in my top 1 million list of things I would want to do in life. The staff was so nice to me that it helped, warm blankets, a magazine to read while waiting, and even put a little lavender patch on the gown to smell while I was lying there. The worst part was after it was all done, telling me that I had to go right back to do a mammogram in other building so they could have in my file. So I marched over, ice sticking out of my shirt, through the hospital, holding back tears for another scan. I'm home now (post ice cream cone to cheer up) and sitting here sad again.

    If both sides, that feels like things will be so much worse - regardless of the type of cancer it is. I already have a ILC mommy and baby tumor on right side. I am not as much scared of the BMX, but what that week after pathology report will say about lymph nodes, or margins or whatever... I was feeling strong and positive yesterday and today I feel like a sack of potatoes just wanting to drop onto the floor in a heap. :-(

    And trying to get my head around the feeling that life ahead will feel like measured time, in some ways. I guess knowing how precious time is and cherishing it, rather than wasting it away with petty frustrations or inconveniences is good, but I am really scared of reoccurance later, and worse. Anyway, you all surely know what I mean, so I'll stop rambling. Just need to do a bit of cathartic writing here before going back to work to get things done before 9/11 boob goodbye day.

    PF


  • deweygirl19
    deweygirl19 Member Posts: 21

    HI ladies

    I'm scheduled September 30 for a partial mastectomy with a reduction and lift on the other side. I just barely make the september surgery. I found out the results of my biopsy on August 9th so this has been VERY nerve wracking to wait almost 2 months for my surgery.

  • PF-you should get results back pretty fast on the MRI biopsy.

    I am more afraid of surgical pathology due to node status and sometimes things are found there not on any imaging. But I try not to go there.

    Deweygirl, Im in a similar boat. Almost 2 mo from diagnosis but problem first seen on mammo in May. Imaging and two biopsies in between mammo and diagnosis took awhile. It is very hard.

    Worse ladies is I feel like Im getting a cold. Praying its allergies! Prob is the ragweed here is bad. Just itchy lungs and throat. Pollen levels moderate high here today.

  • Lucy55
    Lucy55 Member Posts: 2,703

    Thank you all for the info on lymphedema...I'll just have to remember it when I wake up from surgery with a pressure monitoring cuff on my arm !!🙄

    PF...how awful to have to go have a mammogram after the MRI !!! Did you not have one done originally ?

    Trying ..hope you don't get a cold !!! My hubby's parents both have bad colds ..but thankfully they aren't going to visit us until they're better ...Now it's this close I want the surgery to go ahead ! I worry about my surgery pathology too ..last time , after mammogram , numerous spot mammograms , ultrasound and two biopsies it was declared I had " only "DCIS ...but suprise ! ..a 7mm IDC was hiding in there ...ugh !!!

    Dewey ..2 months is a long wait !! You're on the home-stretch now !! We can all sit here and bite our nails together 😬 Mine is on the 16 th !

    Hugs to all



  • cathy67
    cathy67 Member Posts: 411

    Hi Trying2StayPositive,

    I got my diagnosis report one month ago, August 6th, and my surgery is scheduled on September 10. So long waiting! I am also scared of pathology report, fortunately, breast is the organ that does not provide necessary function for the body, we don't need to worry about itself too much after the operation.

    Counting the days .. scared of the final report. I have experienced this during the days of doing biopsy and then wait for the report.



  • Lucy55
    Lucy55 Member Posts: 2,703

    Cathy ..yes ! the wait is the worst part of it all !!!

  • MrsG83
    MrsG83 Member Posts: 2

    I’ll introduce myself. I’m not even diagnosed but feel like I’ve been waist deep in the breast cancer world for almost a year now.

    Last December, I felt a lump. Had MRI, US and then core biopsy. Pathology came back as benign breast tissue with focal fat necrosis. A few weeks ago, I go in for my follow up US (2 months late) and my 2.1cm lump has grown to 2.8. Radiologist suggests another biopsy or excisional biopsy. Today i met with a breast surgeon for a consult. She is concerned that the biopsy may have missed the lump because it should have said “Fibroadenoma” instead of “benign breast tissue”. She thinks it is either a fibroadenoma (fingers crossed) or a phyllodes tumor. She is going to have the pathology slides sent to her to re-examine. If she feels strongly that my lump was missed, I may have another core biopsy done prior to surgery in case it is in fact a phyllodes tumor, as she would then need to cut out the surrounding tissue if benign or straight to mastectomy if malignant.

    After doing some googling, I’ve read that necrosis is a characteristic of a malignant phyllodes tumor so that’s not making me feel great. I just can’t wait to find out what this is after all this stress. Surgery is on the 18th and post op appointment for results is on the 26th.

    Thanks for reading

  • purple-flower
    purple-flower Member Posts: 74

    Hi everyone - new and ongoing. Waiting is so hard!!!! Geesh. Hang in there. And, clearly googling is not good for morale... I find it so scary and depressing - but totally addictive. Hard to know what or who to believe anymore.

    I did get a piece of good news today (finally) that the left (other) side that was MRI biopsied was clear!! non cancerous benign. yay! So, just the right side is the monster. Still doing BMX, but means only 1 side needs SNL taken out, so that's good, and I guess hopeful.

    Gotta run and deal w/life now, so can't write more personal notes - sorry. I am routing for you ALL!

    PF

  • cathy67
    cathy67 Member Posts: 411

    Purple-flower,

    Big victory! I also got a clear mammography for my the other side. Waiting for surgery date, cannot help googling and googling, more and more questions are coming up. Pray for more and more medicines are coming.

  • Masowers
    Masowers Member Posts: 3

    Hi all. I’m scheduled for lumpectomy and sentinel lymph node biopsy on the 9/9. 

  • HopeWins
    HopeWins Member Posts: 81

    Trytostaypositive - I don't think I woke up blue but I also didn't look at my boobs for a few days. I had DIEP so the initial results can be scary... I didn't want to look. They didn't tell me my skin might be blue but they told me my pee might be blue, lol. That didn't happen either but I've heard of other women who had that.

    RE how they know where to inject - I worried about the same thing and the nurse who did my injections was NOT warm and fuzzy. Through a quivery lip because I was scared, I asked if she was going to inject the upper right quadrant and she said- I'm administering per the Dr's orders.... so, yeah. Apparently the Dr tells them the location. I guess it's not like a biopsy that has to be precise, because it spreads through the tissue.

    Purple flower - great news on your results! I had a mammogram assisted biopsy and I feel you... I was traumatized after that. There's just something awful about that experience and then you get to have your boob smashed after it's all over so they get a new baseline image... for me, that has been the worst experience of this whole cancer $#!+ show.

  • JenInMass
    JenInMass Member Posts: 15

    Hi all! I've still been crazy trying to wrap things up at work before surgery and know I have more replies I want to make, but I wanted to quickly pop in and say hi, make sure I'm not missing anyone's surgeries, and also comment on the blue dye, lol.

    I think this is the current list - I hope I'm not missing anyone? I especially hope there wasn't anyone I missed who had surgery this week!

    9/9 masowers (lumpectomy, SNB)

    9/10 JenInMass (UMX + TE), Trying2StayPositive (BMX + TE), cathy67 (lumpectomy, SNB)

    9/11 purple-flower (BMX + TE, SNB)

    9/13 Jlimo (lumpectomy, SNB)

    9/16 Lucy55 (mastectomy)

    9/18 ChaClarey (lumpectomy, SNB), MrsG83 (excisional biopsy - I think? I hope I read that correctly)

    9/19 halezma (BMX, SNB)

    9/25 Kfmama2 (lumpectomy, SNB)

    9/30 Iknewit (mastectomy, SNB)

    date TBD sdsgw2 (BMX)


    On the blue dye - I had SNB at the same time as my re-excision last month. Surgery was late morning so I had an early arrival to get the injection. In my case it was the same radiologist I'd had for my two core biopsy attempts so he made a point of telling me it would be a pretty bad pinch but not as bad as the lidocaine for the biopsies, and since I was also lying down, he wasn't worried about me fainting like I did with those. It definitely hurt but was over fairly quickly. The blue dye was something, though - it was about 4 days before my pee stopped looking blue; for a good 24 hours it looked like one of those blue cocktails, even brighter than blue gatorade. It faded over time. I think I saw a hint of blue on my skin but not entirely sure; the blue was definitely gone by the time I was taking the dressings off.

    A whole bunch of us with surgeries coming up next week ... almost there!

  • purple-flower
    purple-flower Member Posts: 74

    Cathy- yay!!

  • purple-flower
    purple-flower Member Posts: 74

    Hi Jeninmass

    Thanks so much for creating the surgery list. Here we go!! I can't wait until it's October and we are ALL over the hump(s)! (no pun intended 😉

    Technically speaking I am having a BMX and then expanders put in 9/11. Will have the implants a few months after.

    Feeling so strange about the thought of going into hospital, then to sleep, then hours later waking up w it all done. No going back and kind of bizarre.

    PF


  • Iknewit
    Iknewit Member Posts: 12

    Hello all, I will be having a mastectomy for my left breast on September 30th. I've been diagnosed with multicentric DCIS, with other microcalcfications in be the areas that aren't confirmed yet. I'll be having sentinel node removal as well. Iam not going to go with reconstruction. I have akarge chest, so not sure how I'll be after, but decided this would be the best for me. Nice to meet all of you.

  • Lucy55
    Lucy55 Member Posts: 2,703

    Jen...yes ! Thanks for the list !

    Iknewit..glad you found us here...we're all in the same boat ...just waiting together !

  • Sigh, I need help ladies. Im so depressed. I am having an allergic skin reaction to the antibiotic they gave me to take before my surgery scheduled for tues.-a skin rash. I stopped it immediately but the plastic surgeon is not there on weekends obviously. Ill still try to call in case he has an answering service tomorrow. I am allergic to most antibiotics and now this one. Took a benadryl for now but my skin feels sooo hot and red especially on my cheeks and ears. Rash looks pretty mild on arms and chest so far. and luckily I read this drug has a short half life so should be out in 12.5 hours. Ugh. Im really worried this reaction could mess up my surgery. It may not but....Im super sad. THIS ladies, is why if I end up needing chemo I know I couldnt take it. I cant even take regular antibiotics. I feel like giving up. God only knows the reaction to pain meds. As far as I know the anti nausea med and muscle relaxer they prescribed for after surgery are ok as Ive taken them before. Its been such a battle to get to surgery. Im starting to feel like Im better off leaving the cancer alone and taking whatever good quality of life I still have left instead of fighting through all this. I doubt I my body will be able to tolerate any treatments that involve drug therapies anyway. Who knows what will happen during surgery. Ive never had a long surgery either. Just so discouraged. I also wonder if this is why I got cancer-my body is super sensitive to everything. These are the moments I believe maybe my number is just up.

  • Lucy55
    Lucy55 Member Posts: 2,703

    Trying ..I don't have any words of wisdom regarding the drugs ...but I want to send you the biggest hug ever ..Why does this stuff always happen on the weekends when we can't speak to the doctor ? Hang in there ...I know it's so hard ..but I bet the plastic surgeon will have a Plan B for you , and soon you'll be on the other side of surgery ..and this will all be in your rear - view mirror xx

  • JenInMass
    JenInMass Member Posts: 15

    Trying2staypositive, what a stressful weekend for you! My husband is also allergic to some antibiotics so I've learned quite a bit about how dreadful the reactions can be and how frustrating the limited options can be. I hope your system is clearing out -- and I hope you are able to get in touch with your surgeon nice and early tomorrow to figure something else out (or better yet that you were able to get in touch today). I'll keep my fingers crossed for you.

    Masowers, best of luck with your surgery tomorrow!

  • Masowers
    Masowers Member Posts: 3

    thanks JenInMass!

  • purple-flower
    purple-flower Member Posts: 74

    HI Trying

    My gosh... how frustrating and scary. I just want you to know I am thinking of you and wishing you good news and healing. Something will work!!! I hope just putting your emotions and worries into words here in some small way can help. We are here for you. No matter what. Hang in there. sending love and light.

    PF

  • purple-flower
    purple-flower Member Posts: 74

    Hi all

    This is the week for a few of us. I am starting to freak out. Stomach has been hurting all weekend.Every ache and pain, particularly on same side is weighing heavily on me and my nerves. I am so scared what I will awaken to feel, hear, fear, etc. My arm and shoulder on same side still hurt a lot... some due to muscle strain but worries on top of worries. To be honest I still cannot believe this is me and my life. I think I am still in shock. Not sure why I tortured myself but I spent hours during the middle of the night when I couldn't sleep reading tons of posts about all the horrible sounding sexual issues women now have with treatments underway. As if this all isn't sacrifice enough? It feels like so much is being taken away. And I know this sounds ridiculous but I just read somewhere that on AI meds, no grapefruit juice allowed. Ok that is my favorite juice. I mean it couldn't be apple juice... WTF. I am sorry to sound so crazy and go to the dark side again. Just venting here since been with extended family all weekend for dad's 80th bday and had a strong face on the whole time. I am tired, worried and nervous.

    Anyway beautiful ladies I wish none of us was here. and yet we are. I hope you all have easy surgeries and recoveries. Please stay in touch when you can.

    PF

  • Hi ladies, thanks for all the nice replies-im alive. Long story had to go to ER to get steroid per surgeon but only one dose then a ton of benadryl. About to leave to get injections in a few min for tomorrows SLNB and bmx/te recon. scared. Wish me luck.




  • purple-flower
    purple-flower Member Posts: 74

    Hi Trying2

    So glad to hear your surgery is on and not postponed! Good luck tomorrow. I am 1 day behind you so I completely understand being scared. I am scared too. Looking forward to chatting on the back end.

    PF


  • JenInMass
    JenInMass Member Posts: 15

    That's good news, Trying2staypositive!

    I am also feeling scared. At the moment I am more anxious about logistical things (did I get everything ready for my daughter for school tomorrow? do I have everything ready for myself? do I need a second bag for my husband to bring me for overnight? why don't I know this?) and I think it's partly to push the bigger thoughts away.

    So looking forward to being on the other side!


  • Thanks all! thanks Lucy for your encouraging words earlier! Good luck JeninMass and PF. Our surgeries are all close together. Btw I found the snlb injections a piece of cake. Worried for nothing. Wishing you all luck and we will definitely talk on the back side of this. Im pretty scared of the unknown and all the meds Ill be give But we have to do this. Take care all, hugs to you all Sept surgery sisters. Talk soon. Xoxo

  • cathy67
    cathy67 Member Posts: 411

    My surgery has been postponed two hours, still on same day. Hopefully it won't be cancelled at last moment, I heard a few stories. Busy days, still need to serve family.