January 2013 surgery

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  • BrandieMcAdams
    BrandieMcAdams Member Posts: 44
    edited January 2013

    Exactly Tamiami! I don't think doctors understand unless they've been through it. While I haven't been diagnosed yet, I laughed at my currently BS when she said Lumpectomy/Excissional biopsys are day of type surgeries and I'll be fine the next day. That was not my experience the first time around, and while I'm hoping and praying it happens this time, I learned my lesson and have planned to be struggling/recovering for a few days. I don't know how you ladies who have had MX are managing! You guys are AMAZING in my book!

    All of you are a testament to strength and courage!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited January 2013

    Agree about doctors not getting it till they've been through it.  I switched MO after chemo - once active treatment was over he dumped me on a PA for my visits rather than seeing me himself.  He also didn't want to talk about s/e from my AIs - his attitude was like "Well, I saved your life, so why are you complaining?"  I ended up with a new MO - female - who had DCIS and was on Tamox for 5 years.  Believe me, she gets it!  What a difference to have my concerns validated - I really feel like she and I are true partners in this. 

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  • kkuziel
    kkuziel Member Posts: 191
    edited January 2013

    Going back for my follow up on my surgery tomorrow and hoping to get the path report. Getting extremely nervous. Although the surgery went well and my doctor was very happy I know they can't see the future. He removed three lymph nodes which all came back negative, and he took what he hoped would be good margins including all the scar tissue from the biopsy. Tumor is less than a cm. Are there any good stories out there about this being contained and not have entered the lymph nodes? Need encouragement right now. Felt pretty good after the surgery knowing that "thing" was finally out of me, but as the week has gone on I feel the fear creeping back in. Really need to feel hopeful again. This has been a "ride" that I still don't feel like I'm dealing with all that well.

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    hi kkuziel!

    so i had a very large lump in one (LCIS) and when going thru chemo they found DCIS in the other.   after chemo i had my Bilateral Mast and they took all of my lymph nodes on one side (because a previous biop showed it had gone that far)  - none on the other.   at my first follow up i got my path report to show that all my nodes they had pulled were clean on both sides.   this was really great news and i was much further than you and my tumor was much bigger.   i'm sure they will have you do another PET scan which will help you be more confident.

    every situation is different for sure......but continue to stay strong and be confident.   remember that it is what it is....no matter what and you will get thru all of it just fine.   because of the original diagnosis you will always worry.....forever.....but now this is a part of us and you can't let it take you over.   there is ALWAYS hope.......just keep your faith strong sweety!

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  • fight4two
    fight4two Member Posts: 146
    edited January 2013

    I MADE IT!! Just wanted to check in and let you know that I'm back home and on the mend after my surgery.  I do have a drain in, but its not draining much.  Not sure if thats a good thing or bad thing.

    How do you guys elevate your arm when you are sleeping (for those who had lymph nodes removed.)  I try to keep my wrist above my elbow above my shoulder above my heart, but when I wake up, my arm is never like that!

    And mirmirpanda, are you able to hold your sweet baby yet?  My baby is 4 1/2 months old, and I'm wondering when I can take care of him again.  It would be heartbreaking if I had to wait the full 6 weeks.

    Love to all!  And I'll be thinking of those who have surgery the rest of this week - my surgery week sisters!  You can do it!  Its so nice to know that "thing" is OUT!

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  • Tamiami
    Tamiami Member Posts: 396
    edited January 2013

    kkuziel~  If the lymph nodes were clear during the surgery then they will stay clear, unless it is a microinvasion (very rare).  As far as getting clean margins, I'm sending you all the positive vibes I can!  Hopefully the surgery part is over for you and they got it all!  Please let us know how your appointment goes tomorrow.

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  • Tamiami
    Tamiami Member Posts: 396
    edited January 2013

    fightfor2~  I didn't know we were supposed to be elevating our arm while we sleep.  I think I missed the memo!  It sounds kind of difficult to do as well...I'm curious how others have done it as well.

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  • smethot
    smethot Member Posts: 161
    edited January 2013

    No way i elevate mine...it sits out and down...feels heavenly to get the arm away from my armpit incision and the damned drain...WHICH GOT REMOVED TODAY!!!  Woo hoo!  My arm kinda hangs like a scarecrow arm...and i was told NO above my head with it for at least 10 days...wonder if the cat sleeping on my hand makes any sort of a difference...?

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  • JMotk
    JMotk Member Posts: 20
    edited January 2013

    Hi ladies, my name is Jen and my BPM was last Tuesday. My first post began in a different section of the boards but feel like this is a more appropriate place to linger. Your stories are touching, heartfelt and moving. Thank you, all of you for sharing your stories. It helped me to make the right decision in the last few weeks.



    My other post and short story, prior to today, can be found here.



    http://community.breastcancer.org/forum/83/topic/797515?page=1#idx_12



    If anyone is here, looking for insight on PBM, I would be happy to share.



    I am a patient with Kaiser Permanente in the east SF Bay area, CA.

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    I got my drains out today!!!! Yipeeeeeeeeeeee!! Next i have to call to schedule physical therapy for keeping the lymph moving in the left arm. I have been looking at my options for a medical alert bracelet for my left wrist that I can wear outside the house to alert emergency or medical personnel that that arm cannot have blood pressure taken or a needle stick.... any suggestions? I have always been sensitive to any jewelry that is clunky, I jump when any regular bracelet goes clunk on my desk, and I type a lot at work so there is a lot of potential clunking. Also I never like hard bracelets, they dig into my wrist or leave a mark when I rest my wrist on the work surface. And the medical alert bracelet has to be easy to put on and take off, and it has to be able to get wet when I wash my hands after eating or using the rest room at work. It has to fit no matter what size my wrist is if God forbid I do get lymphedema. The hospital put a hot pink bracelet on my left wrist that reads LIMB ALERT in black letters, it's some type of waterproof paper that sticks to itself, this would be perfect if i could find a medical supply place that would sell them to me, anyway it won't last much longer and I dont want to remove it till I have something to replace it. I've been googling "bracelets for woman who is a pain in the ass" with no luck.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited January 2013

    Wird - try a RoadID.  It's for runners, but you can have anything you want put on it.  The Slim Wrist ID looks like a rubber awareness bracelets, and you can get them in a bunch of colors - you just snap the personalized metal piece off of one color and on to another.  I'm a runner and I have LE, so I have my name, DOB, home phone, hubby cell, and on the last line I have NO IV/NEEDLES/BP RT ARM    http://www.roadid.com

    Don't get too fancy a medic alert bracelet - if it looks too much like jewelry, EMTs may think it's just a cute bracelet and not recognize its medical significance.

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    In the hospital they said I had to elevate my left arm and they elevated my arm on a bed pillow that they put next to me, my arm was elevated on that pillow and it was next to my body, it wasn't above my head because I cannot elevate my arm over my head, or else the blood flow gets cut off, and even when sleeping my arm stayed propped on this pillow. When I'm in the recliner watching television, or if I have to sleep in the recliner, I elevate my arm on a narrow pillow that I guess is used to prop a baby on when nursing, it's shaped like a "u" or a "j" and I can actually rest both arms on it as I am kind of wrapping the pillow around me from the front. I can prop the television remote or a dish of ice cream or my iPad on the part of the pillow that tucks around my middle, and this works pretty well.

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    Thanks, Mary. I will check that out. I wondered if it was smart to get an ID bracelet that looked too much like jewelry. I appreciated your suggestion about that.

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    wirdgirl118!    woooo hoooo!   you got your tubes out!   how liberating huh?  i love it!

    i have a med alert bracelet for my lymph arm as well.   it's good to have one for sure but you can do a search online and find ones that will work for you.   i ordered the metal alert part and then i have a friend who makes the bracelet part to attach.   mine personally is just pretty plastic beads that is elastic so i can pull on and off very easily.   i would imagine that you could just get a macrame type of one as well.....or like a friendship bracelet one......or make your own!   they're pretty easy.....just need the clasps at each end to attach to the alert part and you're good to go!  also....i went to the lymph therapy and highly recommend it.   there is so much you don't know about your body that even if you only go a few times to learn everything you can.....its much easier to stay on top of prevention!   good luck with that.  i had a great therapist......

    smethot!   congrats on getting yours removed today too! 

    gosh i can't wait til i can write in with that too!  lol!

    fight4two:   i was told that we just don't want anything to cut off the circulation.......so i was told not to like sleep on my side and rest my head or my hand/arm on that particular arm........

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  • kkuziel
    kkuziel Member Posts: 191
    edited January 2013

    Thanks to all on your kind words of encouragement about my follow up appointment tomorrow. I feel like my situation is so easy compared to what some of you are going through that I feel like a total wuss about this. For my whole life I've been very afraid of anything medical related (even though I was in premed for a while) I guess when I look back at this I'll actually be amazed at the fact that I made it through what little I've done so far. In no small part it's been because of all the kind words and encouragement you've given me here. Thanks for the good thoughts and encouragement. Kris

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  • abitmuch
    abitmuch Member Posts: 19
    edited January 2013

    Hi everyone

    Oh man, the rollercoaster!

    I was doing great yesterday after I went for my post-op appointment and an ultrasound for the baby.  It turned out that the pathology report was not yet ready as they were still looking for a 'focus of invasion' in my high-grade DCIS breast that was taken out.  I took it as a good sign.  The ultrasound then went OK - the baby seems to be doing fine (about 7cm long now at 13 weeks) and I could see the little legs and arms actually moving around!  It was kind of exciting.

    Even though the surgery wound was still bruised and sore, I felt much better having the staples removed.  So much so that I went back to my office today to do work!  

    Then as I was packing up, I received a call from my BS who said that he had heard back from the pathologist, who finally DID confirm a focus of invasion.  This means that we have to go to the next step, which is another surgery to remove my lymph nodes.

    *SIGH* 

    I am way more scared of the ALND than I was about the mastectomy, as I've read so much about lymphedema and lost of usage / nerves of the arm, etc.  I really really really don't want this surgery, but it seems like I don't have any choice now.

    It also happens that my BS will be on vacation starting next monday for two weeks. So he's trying to see if he could fit me in tomorrow (!!) otherwise, I'll have to procedure on Valentine's day.  

    Emotionally I'm more inclined to wait another two weeks, gain back my arm strength before going under again. But I don't know if it makes more sense to get it all done and over with right away so I don't have to stretch out recovery time. 

    ggggaaaaaaaahhhh Yell

    (also, thanks for all your support and encouragement, this discussion board is amazing)

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  • suzilla
    suzilla Member Posts: 36
    edited January 2013

    Hello Ladies!!! Sorry for not checking in for a while.....i have been recovering from my surgery on the 17th. My BS said i did very well and that all went good! Yey! I was so happy to see my beloved hubby and daughter when they took me to my room after recovery! I had no nausea due to the anti nausea patch they put behind my ear before surgery. The nurses and docs were all very courteous and sincere they took care of me good. I have been able to move my arms and walk around my home sibce returning back home the following day after surgery. I do try to stay on top of the pain tho' cuz it seems to work up slowly, and atarts to feel tight, heavy, and bruised...... i am taking vicodin. Does the tingling and numbness go away? I hope u r all recovering nicely. Oh and guess what? I went to walmart for a bit today, i wanted to get my young daughter something for her birthday tomortow. I got my first ugly look today...which in a way made me feel bad...but then i thought to myself...he dont know me!!! Or what i have had to go thru!! I forgive him for he doesnt understand.....i know i am bald and flat!! I love it, and best of all my husband loves me for the beautiful woman he knows on the inside! And my children love me too they keep telling me that im just getting cuter!!

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    abitmuch........i had all my nodes removed on one side and it was very scary for me too.   i did soooo much research on lymphedema and talked to soooo many ladies.   i also went to a lymphedema therepist.    they all helped me to realize that just because you have them removed does not mean you are prone to lymphedema.   you definitely want to take heed to what you should and shouldn't do but some women never ever get it.  i talked a gal who had her surgery done 25 years ago and never got lymphedema.   i have a friend who had hers done 17 years ago and she just recently got a little tiny bit of swelling in her forearm that only she could notice.    yet, true, i have another friend who has only been going thru this for a few years and she has a bad case of it.....however, she does alot of the things you're not really supposed to do.   she takes those chances.    i have nothing as of yet and it's been a year almost since they've all been removed and i just went thru my recon surgery and there's not extra fluid hanging around.    so i'm still hoping i'll be ok.   it sounds awful and scary but if you're smart.....you will be ok.   

    also....omg how cool you got to see the baby move so much and the fingers and toes........what a blessing!

    suzilla.......those looks suck don't they!   i remember feeling the same way.   i JUST got my recon surgery and it's just the TE's which aren't filled with hardly anything right now so very flat but i do have my hair.  which i don't know if that's better or not!  lol.  but i remember those looks and i just smiled.   people don't even realize that they are staring and remember.....they could be thinking something way different then you think.   i know there have been people who come up to me and talk to me about it.   there have been those who look like they wish they had the nerve to but just smile instead when i catch them.....and then those who are just ignorant.   those people will be the ones who are just ignorant about pretty much everything so don't take it personally.   Wink   you have loved ones around you and that's all that matters.  i held my head high and paid no mind and that in itself made me feel so empowered.   

    God bless!

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  • Mirmirpanda
    Mirmirpanda Member Posts: 89
    edited January 2013

    fight4two, yes I am back to full on snuggles with my 18+ lb sack of flour :). I wasn't allowed to pick her up for the first week, but had no choice but to during the second week and it was totally fine. I did however hold onto her briefly, well as much as I could, during the first week. I just couldn't stay away haha, that and she says 'mum' and reaches for when she's upset, it broke my heart not to be able to scoop her up. Also, when I'm sleeping I stuff a fluffy/firm pillow under my arm, sorta on my chest and it works nicely. I sleep propped up in my bed now, the couch was driving me nuts and I missed snuggling with Chris.



    suzilla, I'm with dnadebbs on that one. People can be completely clueless sometimes, but you are right, they don't know you or what you've been through... Hell, what you're going through. You are magnificent.



    abitmuch, I remember how excited I was when I saw Hazel on screen for the first time, I was so in love!!! You're on one crazy journey, but that lil one will give you such strength. If it wasn't for Hazel, who knows when I may have found out about my tumour.



    Congrats to everybody getting drains out and feeling great!!! I hope everyone fresh from surgeries are resting well and our ladies in waiting are finding peace.



    We are all kicking some ass!!!

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  • josie123
    josie123 Member Posts: 1,817
    edited January 2013

    Met with my MO today and the rad oncologist .Both seem to be great Docs.Mo mentioned the fact that they Don' t usually test for HEr with D IS but if I wanted to do this trial for Herceptin while having roads they would do the test as part of trial.If I was +Her then I could participate in trial.I decided no Herceptin for me.Not worth it.She did mention I could sign up then getting my Her status and drop out of study never taking Herceptin.My Rads onc was super sweet .He explained my path report to me and wanted to hear my story.He doesn't want to start rads for 4-6 weeks post op.Not one of these Docs today even mentioned pre cancer.They referred to it as breast cancer.Sorry I 'll let it go.Don't get me wrong my Breast surgeon is very good and super nice but needs to think carefully before saying things to his patients.He is a very shy guy and seemed embarrassed when I showed him my incision .He may have felt awkward in front of my hubby.But he looked and quickly covered my Breast.Maybe I lost all modesty after 3 children but It doesn't bother me one lousy bit for my Breast surgeon or any of my docs to see my Breast.It's really not much too look at anymore anyway.

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    I am sitting at my dining room table, eating cereal. The drains were removed yesterday. Today, my former-booby area feels tight and a little achy like when my body is fighting something, like flu aches just in that area, from the healing process and my body adjusting to the new normal. So far today I have only taken Motrin (ibuprofen) and I feel pretty good! Later, I will call and set up my oncologist appointment and schedule my physical therapy for keeping lymphedema at bay.

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  • shadytrake
    shadytrake Member Posts: 142
    edited January 2013

    Hi all,



    Surgery for me on 1/29 sentinel node test and lumpectomy.



    Trying not to worry about it too much. I'm probably in a little bit of denial.

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    josie123:   remember too (i truly don't know your situation) but alot of times the doctors will cover their patients quickly and do things for YOU.   there are a lot of women out there who ARE embarassed by how they now look and alot of doctors try to be sympathetic to that.   i am not one of those women.....like yourself.....i don't even use the little cover up paper thing they give you.....i just take my shirt off.  lol.   however, as well as my onc knows me.....he still asks me every time if i want it just in case and out of respect.   every woman is different and its hard for doctors to know how you will be feeling on that particular day.  lol.  i know my emotions were different daily!   lol!

    wirdgirl118:  after i got my drains out after my dbl mast......i had slight infections.  both sides....they were taken out at different times and both times a few days after i had them removed i started getting red and warm and had to take antibiotics.  the meds worked fine.   my BS told me she didn't know why that happened but it did......and again....both times they were removed.   i have them again from my recon and i know i will probably have to go back on the meds when they are removed.   its just the way my body works.   so watch for it and make sure you let your dr know......they don't usually look for it....you have to bring it to their attn.

    have i mentioned how bad i had drains?   ugh!

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    Thanks dnadebbs, I will keep an eye out for infection. I want to moisturize the former "under-boob" area, the skin is dry and itchy, but I don't want the sutures area to get infected. So I am not doing anything about that yet. I don't even know what kind of lotion I could use, I have googles it and I read something about the pH of the skin and the moisturizer makes a difference for keeping intact or non surgical skin healthy and preventing infection. So I guess it is important to use the right moisturizer on post surgery areas of skin too.

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  • wirdgirl118
    wirdgirl118 Member Posts: 231
    edited January 2013

    Hi Kris, I don't get the sense that you are a wuss. But even if you are a wuss, that is ok too! This is your journey and however vulnerable or strong you feel at any moment, it is a real feeling, because it is your reality, and nobody else's. I have doubted my reality, as we all have, when I feel I am not being supported by those around me, whatever the reason (they are in denial, feel threatened by what I am feeling, are too caught up in their own reality to give a nod to mine -the latter can include children which is expected but can still hurt, or adults who you would think could behave better at their age, but no!). As an example, I am friendly and enjoy talking, but I also have a strong need to have me-time, quiet-time, alone-time, whatever it's called, and sometimes it's like flipping a switch.... I am having a great time with people at work or whatever, and then suddenly my fun is over and I feel very overstimulated. If I don't switch gears at that point, I feel panicky or cranky. Not everyone understands or supports this. They're like, which is it, are you sociable or are you anti social? Both, I guess. Or neither. Oh well. It is what it is.

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  • JRMH
    JRMH Member Posts: 59
    edited January 2013

    shadytrake- I added your info to the list.

    wirdgirl- I like what you said about this being an individual journey. You are right that however vulnerable or strong we are feeling at any moment is our reality.

    Thinking of and praying for Erin and jenimomof3 as they have their surgeries today and also of Brandie who has hers tomorrow.

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    wirdgirl118:  

    i used cocoa butter lotion and aquaphor.    but if you're close to a Costco.....my lymphedema therapist says their brand lotion is really great too......due to the ingreadients.   she suggested it on my radiated skin to help it heal better.  i didn't use it....lol....never got to costco but she highly recommended it.   what i DID use.... worked.....it got raving reviews by all my doctors that my skin healed very very well.....so well that i was able to have the less invasive bilateral TE recon instead of the other choices.   we'll see how it works for me as i continue to heal but they were all impressed.   i think the key really is to make sure you just do it all the time.....and massage while you do it.....it really helps the skin heal better.

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  • abitmuch
    abitmuch Member Posts: 19
    edited January 2013

    dnadebbs - thanks for your encouraging words my lymphedema/ALND worry.  I've decided to not do the surgery today and give myself some time to emotionally and physically prep for the second surgery, which is now scheduled for Valentine's day.  I'll also be in the middle of second trimester, so I feel better about that.

    keep on keepin on, I suppose.

    wirdgirl118 - I had my drain out for a week now and that tight-chest + sore feeling still lingers.  i have a big green bruise surrounding my mastectomy wound as well, some parts are sensitive while some parts are completely numb.  it is really weird sensation.

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  • dnadebbs
    dnadebbs Member Posts: 82
    edited January 2013

    prayers and blessings of strength and healing for all those in surgery!   

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  • Hopex3
    Hopex3 Member Posts: 397
    edited January 2013

    Off to surgery I go! I will let you k ow the outcome probably tomorrow. My surgery is not until 2:30 and I have cotton mouth so bad. Ugh! Plus I'm so scared! But thanks for all your support. I so appreciate each and everyone of you!



    Best wishes to jenimomof3 on your surgery today as well!!



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