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January 2014 Surgery Sisters

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Comments

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    k, now I have another question,

    Before I ask it I want permission from you all that it is ok.

    It is about nipple sparing surgery.

    I just don't want to hurt anyone's feelings.

    Eve

  • lighthouselady
    lighthouselady Member Posts: 248
    edited January 2014

    I don't think you'll hurt anyone's feelings! At least not mine. Happy

    Girlstrong... sorry about out of network. I would do the same, though, and stick with a dr you trust. That's why I drive 3 hours each way for my surgeons. 

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    Hugs to you Summer.....

    Laurie please let us know how you are doing....always something isn't it?

    ok, my question, hope I am not being insensitive, I am just curious.

    Why couldn't you all have nipple sparring MX or BMX?

    I did and someone else did (HVV?) . I even had a bit of one areola removed. I asked my BS today if she was still ok with that approach given my path, and she said absolutely yes.

    What is the difference between us? reconstruction?

    again if I am being insensitive I apologize.

    Eve

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited January 2014
    Hi Eve. I did not have nipple sparing. It is really only appropriate for those in super early stages as in 0 or 1a and even then not for those where location is close to the nipple. There is a world separating out many of us from stages 0 and 1a. As for me even in those circumstances I wouldn't risk it. Understand that I respect everyone's individual path.

    V
  • Mommyathome
    Mommyathome Member Posts: 876
    edited January 2014

    Hi ladies, 

    I am having my bilateral mastecomy tomorrow! I've been waiting 2 months and with each passing day grew more and more anxious. I am scheduled for 830am so I will finally be going in. I just met with my plastic surgeon to be marked up. I am extremely nervous; nervous of the path report, pain, what I'll look like, how I'll feel emotionally after, etc etc etc. I know I'm in good hands. I trust my doctors but.... It still seems like a bad dream and I'll wake up and say" wow you're not going to believe what I just dreamt of- I dreamt that I was diagnosed with cancer!" well I hope to recover quickly with NO extra surprises!!!! I'll post when I'm feeling up to it!! Good luck everyone else who is going in tomorrow!!! I'll be thinking of you :)

  • girlstrong
    girlstrong Member Posts: 299
    edited January 2014


    Hang in there mommyathome...what your feeling is so normal, at least that is what I am feeling too.  This is something that we must do and get through.  My surgery is at 2:30 which is even worse because I know I will just be pacing my house in the morning waiting and waiting.......I will be sure to post too when I am done.  Will you have chemo or any other treatments?  Hang in there, your in may prayers....

  • lighthouselady
    lighthouselady Member Posts: 248
    edited January 2014

    mommyathome - You will be fine!  Like you said, you trust your doctors and you are in good hands.  Trust me, once you're on the other side, you'll feel a hundred percent better!  (Maybe not physically...LOL...but emotionally!)

    Eve - I couldn't have nipple sparing because of two reasons.  One, my tumor was very close to the nipple, and two, I'm BRCA+.  There's no way my surgeon would leave any breast tissue behind, even on my non-cancer side.  

    Just got back from an appt with my MO.  I will start Tamoxifen ASAP.  Oh joy.  And tomorrow I meet with the radiation oncologist.  The fun never ends.  Happy

  • levassel
    levassel Member Posts: 254
    edited January 2014

    Back from emerg....ECG was fine so I'm not having a heart attack at least...lol!

    She took me off the anti-depressant...too coincidental the nausea started when I started taking those.  I'm not depressed....I have bouts of anxiety.  So I have clanazopam to take "when needed". I took those after my dx and they really helped to settle my nerves.

    So hope that works.  Be nice to feel good.

    Alexandra.  Another thing...with T3 anyway is that if you are not in pain the effects are stronger.  Maybe the same for percs?  After surgery I was taking 2 every 4 hrs....I was a little wonky from them.  But if I took 2 now I'd probably be comatose for hours. 

    Best wishes for your surgery.

    Laurie

  • levassel
    levassel Member Posts: 254
    edited January 2014

    Wow....lots of posts today!  :)

    I didn't have nipple sparing surgery either. I was stage 1 grade 1...so ver early...but I had ILC and LCIS.  Not sure if that was why....but nobody offered the option and I didn't ask.

    Michelle-I'm on tamarin too since nov 20.  Had a few aches but nothing major.  Had a follow up with MO last Monday and told her everything was good.  The next night I started having night sweats....tamoxafix?...stress?  But my bed is soaked every morning....and no I'm not peeing the bed...lol

    And by the way michelle I checked out your blog....loved it.  Wish I had done that.  You are amazing!  Driving....back to work! An inspiration to many women!

    Laurie

  • lighthouselady
    lighthouselady Member Posts: 248
    edited January 2014

    Thanks Laurie - you're sweet.  :-)   Sometimes I dread having to come up with something every day, and then other times I have so much to say it isn't funny.  And some of my friends have started following my blog and they'll hound me if I miss a day.  LOL

    I already have hot flashes thanks to chemo.  I'm told the tamox can make them worse, but at least I know what I'm in for.  

    I take clonozepam(sp?) for my restless legs syndrome.  

  • levassel
    levassel Member Posts: 254
    edited January 2014

    I love clanazopam!  I REALLY works to settle me down.  I'm careful about how often I take it cause they say it's highly addictive.  If it is...I'll worry about that later!  :)

    Laurie

  • levassel
    levassel Member Posts: 254
    edited January 2014

    To all those heading to surgery....remember you are entitled to your feelings!  Cry...be nervous....be scared....scream! There is nothing "normal" about what is happening to us except our feelings.  Be strong when u can....and feel how you feel when u can't.  It's ok.  :)

    Hugs

    Laurie

  • Mommyathome
    Mommyathome Member Posts: 876
    edited January 2014

    Girlstrong,

    So far they found DCIS and LCIS. I'm hoping they don't find invasive!!! As long as they don't find any surprises, the mastecomy is it for me!!! Not that that's anything small but at least I'll be done! Fingers crossed!!!

  • trying2staypositive7
    trying2staypositive7 Member Posts: 27
    edited January 2014

    Hi my January sisters!

    Eve-congrats on getting those drains out! Thanks for letting me know it didn't hurt!

    Lighthouselady-hope that work went well! 

    To all of January sisters having surgery, everyone's right-it's sooo much better on the other side! Hang in there and know that we're here if u need us!

    Sending everyone gentle hugs

  • suzy123
    suzy123 Member Posts: 5
    edited January 2014

    hi all,

    I guess I found this thread a little late, I will be having my bilateral mastectomy with sentinel dissection (right) coming Friday, January 31st, so I am still a January girl. I was diagnosed with DCIS in my right breast two weeks ago. My funny breast was always the left one, ADH in 2009, two excisional biopsies, four 'normal' ones, several MRI's, ultrasounds, mammo's and of course 4 1/2 years of Tamoxifen kept me on my toes. However, the DCIS appeared in my other breast. I decided to have a double mastectomy after lots of reading and talking to people. I am in a high risk group being a DES daughter, and going from ADH to DCIS despite Tamoxifen sort of makes me wary of other medications. My oncologist wanted me to have a lumpectomy, then radiation, removal of my ovaries to plunge me into menopause and then another round of medications, close screening with MRI's etc...but when I told him I would still have the feeling that it could come back, and worse than DCIS, he was ok with the mastectomy. This afternoon I will go to the PS, just to check out what possibilities there are, but at the moment I think I don't want reconstruction. This thread has been very helpful so far...

  • levassel
    levassel Member Posts: 254
    edited January 2014

    suzy123...wishing you well with your surgery Friday.  You are in the right place on this site.  The support here is amazing.

    The decision to do recon or not is so personal.  I had BMX with immediate reconstruction.  For me (I'm 43) it was a much easier adjustment to my new body with my new little foobs.  I was totally OK when I saw my chest after surgery.  It is more painful to go this route.  Everything is stretching...but the pain is managed fine with pain meds and it doesn't last too long.  I don't regret my decision.

    But I know many women who choose not to do recon and are perfectly happy with their decision.

    Once you meet with your PS you will know if its for you.  Best of luck.

    Laurie

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    hi Suzy,

    Welcome and best wishes on Friday. I will be two weeks out on Friday and feel pretty good, just tired.

    Laurie is right about reconstruction is a personal choice. if I hadn't been able to keep my old implants and nipples I would have gone flat. Didn't know until I awoke from BMX what I would be getting.

    Laurie how are you feeling hope all is well.

    hello to all, can't wait to hear from our Jan.29th surgery sisters.

    hugs,

    Eve

  • lighthouselady
    lighthouselady Member Posts: 248
    edited January 2014

    Hi Suzy.  Sorry you have to be here  {{hugs}}

    Sending positive thoughts to you for Friday!

  • trying2staypositive7
    trying2staypositive7 Member Posts: 27
    edited January 2014

    Hi Suzy 123-sorry that u had to join usbut believe me when I tell you you're in a good place. Best wishes on your surgery Friday. Don't worry, You will be fine. It's a lot better on the other side! 

    Just left the plastic surgeon's office and he took out 2 of my three drains. It did not hurt at all! Eve, u were right! I felt nothing! I'm so happy about that. 2 down, 1 to go! 

    Sending gentle hugs to all.

  • levassel
    levassel Member Posts: 254
    edited January 2014

    I'm feeling a bit better today.  Mostly just resting.  I have some gravol now and that seems to help...puts me to sleep anyway.  LOL

    Laurie

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    Yay! Trying...just one to go.

    Glad you are feeling better, Laurie. What is gravol? I am still taking percoset at night for burning pain and sleeping but get awful nightmares.  So I am not taking it tonight, however sleep is very important for me. I hate laying awake at night.

    Michelle how is going back to work treating you. I could never work for my DH. he is so wonderful at home but claims he is a real pain to work for, apparently a real stickler for perfection(warehouse manager) for a 3pl.

    Anyhow,  the bit of depression I have been dealing with is still there...sigh. And I have to quit smoking...k, i'm bad.  I've decided to start sewing quilts (again, did it in the past) for Soldiers Angels, to get my focus off of my little discomforts. The quilts are given to wounded service members when they are being transported to hospital.  If anyone knows someone with cotton fabric that they would like to give up PM me. I'll pay for shipping.  Don't know if that is ok to post here...but what the heck. At least instead of spending money on something stupid I can do something positive. can't wait to get started. See I feel better already...I love to sew.

    Hope everyone is good.

    love and hugs,

    Eve

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    Michelle,

    I can't imagine what you have been through and now tamox and rads.....sheesh. I totally admire you and your positive spirit. I can only hope that I can come close to your helpful and loving response to the rest of us. Thank you.

    Eve

  • levassel
    levassel Member Posts: 254
    edited January 2014

    Eve...Gravol is just an anti nausea med that you can just pick up at any drugstore.  Lots of people give it to there kids when traveling for car sickness.

    And Eve you are not bad for smoking...it's a stressful time.  I quit smoking 3 months before my DX and started again the minute I found out I had cancer.

    I haven't been smoking very much...put the patch on...and then take it off for a couple of puffs.  We're all human.  :(

    Do you know what your depression is focused on?  Have you thought of talking with someone?  It might help you deal with this better.  Hope you feel better soon.

    Laurie

  • suzy123
    suzy123 Member Posts: 5
    edited January 2014

    I decided not to reconstruct straight away. It's going too fast. First the mastectomy, then I will think again. 

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    You know Laurie, I don't know why I am depressed. in the past, a long time ago I was able to pin point my issues. I did go for counseling and took anti-depressants.  Things were much more acute back then. Now it is a weird feeling....I think I am feeling out of control with no real answers for treatment. It seems all, so you should do this or that but we don't really know if it will work.  So you get your boobs cut off in the hopes that you can walk away but no, you can't because the cancer was worse than we thought. So you wait again for a test, oncotype, to see if you need chemo but do have to do AI's. No I don't want to do Ai's. The side effects seem like the commercials on tv that run by the effects of a new drug. So we become guniea pigs. I want to live but I want to LIVE!!

    I have been, hell we all have been through enough pain in our lives...now this crap.

    I have 2 grown, fabulous sons, and a 10 yo step son whom I adore and adores me. My DH of 3 years says his son and I are 2 peas in a pod. Mostly because we talk a lot.   lol  My DH has been my friend for 15 years....soul mates. A pure gem of a man. So much happiness, finally, in my life...and I guess I am kinda pissed off.

    So I guess that is why I am depressed.

    I feel everyone's pain. I am pissed that there is no cure...but the methods to help us live longer are still so barbaric. Do you know they were doing MX's in 548 ad. really? that is all we still have.

    K, better stop with the rant....just..

    hugs and love to all,

    Eve

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    Well Immmmm baaaak,

    here is the thing,

    7 years ago my then husband was diagnosed with colon cancer...surgeon said he got it all you don't need chemo...he also said watch out because the oncs will want to throw the book at you concerning chemo.  Well hubby decided to go with the chemo..12 months. fine. Pet scans, cat scans....hmmmm Just when he was at the 1 year mark of only needing scans every year.....lo and behold he ends up with GBM a very aggressive terminal brain tumor. his PCP thought his headaches were from a sinus infection for 2 monthe. his brain surgeon gave us a long talk about new research in nano robots that would be able to go in and eat the tumor....ha! not really. His rad onco said he had people live 12 years with this DX ...yeah if you continue to pieces of your brain removed. and end up as a vegetable...you CAN live.  breath maybe.

    So he lived 18 months...we, including his neuro  onc attribute the lengthy time to him smoking pot...it stalls the tumor from producing blood vessels....who knew.  Rob was 45 when he died. Oh, and BTW he smoked 2-3 packs a day , his lungs were clear...go figure

    So my point is.....does anyone really know anything?

    I am so sorry for this ....I am just so in awe of all of you. In awe of your grit and faith. you are an inspiration. I am an angry woman....I don't trust the drugs, the treatment, not even the docs ....I know every one has to decide for themselves....

    how do you make the decision for further treatment.

    thanks for letting me put this down on "paper".

    I am done, promise

  • lighthouselady
    lighthouselady Member Posts: 248
    edited January 2014

    trying - YAY for getting two drains out. Just one more to go, and you'll be free. LOL

    Laurie - glad you're taking it easy. I've never heard of gravol! I hope you are able to stop smoking again, but I'm sure it's not easy.

    Eve - Oh man... I am so sorry to hear about your husband. What a sad, sad situation, and now you're dealing with cancer again. That makes my heart ache for you. You know what? Nobody knows what will happen with anything. You just have to make the best decisions you can. That's awesome about the quilts. What a wonderful thing to do! I'll send no smoking vibes to you, too. I've never smoked, but my husband did for over 30 years before he quit a couple years ago with e-cigs. I agree with Laurie - how about talking to someone about your depression? There is so much about this cancer thing that will bring you down, you don't want to let it get to the point where you're feeling more than just a little depressed. {{hugs}} (Thanks for the sweet compliment...I have many women supporting me who have gone down this road already and I just try to stay positive and pay it forward!) Oh, and I'm SO glad that you have your (new) husband...nice to find happiness again. My hubby is my 2nd marriage and I'm his 3rd... so we both took the long way. :-) But we've been together for 14 years and have 2 kids. You have every right to be mad about this whole thing. It sucks. SUCKS. I've done four months of one of the most harsh chemo regimens, had the most radical surgery and will do radiation plus Tamoxifen... and yet my 10 year survival rate is crap (because of tumor size, # of nodes and BRCA+). So BLAH. I definitely hear you.

    Working for my hubby is fine. He and his brother own an electrical contracting business, and my sis-in-law (brother's wife) and I take turns working half days in the office to help the full-time office person (who bosses me around a lot more than my husband does...LOL). I had been a stay at home mom since 2001 and didn't really even want to go back to work, but they really wanted someone to learn the office duties (payroll, bookkeeping, etc). It's a very relaxed atmosphere and not a very stressful job, so I can't complain.  

    I hope that all of the surgery sisters today are doing well.  Please check in when you can - thinking about you and hoping all is well.

    I had my rads consult today.  Loved the doctor - a very kind-faced, older Asian man named Dr. Au (how appropriate...LOL).  He was very patient and thorough, talked with us for a long time.  I won't start for a while... my incisions still have to finish healing and my plastic surgeon wants time to fill my expanders before I start rads.  But at least I'm "on the books" so to speak.

  • ClaireFraser
    ClaireFraser Member Posts: 47
    edited January 2014

    Has anyone had numbness in your hip/ leg post UMX?  I just noticed it when I got home.  I called my PS, who said I should call the anesthesiology dept. tomorrow morning.  I am scared it's going to be permanent.  Could this be related to the sentinel node removal?

  • pinktiara
    pinktiara Member Posts: 716
    edited January 2014

    Michelle,

    you are so kind, thank you for your support,

    funny, my former husband and I owned an electrical contracting co. also.

    I, in the beginning was up in attics, crawling over dead things, pulling wires, know how to read blue prints.....and do the wiring from them. We eventually started installing really high end lighting.....$10,000 and up light fixtures...have worked in some really awesome homes here in Orlando. Loved it.

    So glad you like your RO...so important to have your doc be in tune.

    I absolutely have tons of respect and trust for my BS and her staff...Dr. Lisa Minton. the best.

    I am ok... I'll be ok.....just needed to clarify how I am feeling.

    thanks for not judging.....

    and YES yes...my DH is the absolute bestest.......

  • levassel
    levassel Member Posts: 254
    edited January 2014

    Clairfraser?  Are you on tamoxifen yet?  Could that be it?  I had numbing and tingling in my shoulder arm fingers but not hip and legs.

    Is it constant?  I had an ECG the other day because of my tingling.  It was fine. 

    Hope you are feeling better today.

    Laurie

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