recently diagnosed...yipes!

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zha-an
zha-an Member Posts: 31
edited October 2014 in Just Diagnosed

hi everyone! Feel very fortunate to have found this forum. Mind you...sorry I need it...but very glad for the support!

I was recently Dx w IDC, stage 2,grade 1(at this point...sentinel nodes biopsy is Wed so that could chg). ER+,PR+,Her-.

my tumor wad located just under areola close to skin. Because I am allergic to local anesthetics, we did a lumpectomy to determine type of tumor. Unfortunately we didn't get clear margins on 3 of 8 planes so I am scheduled for re-excision and SNB in 2 days. My PET scan was clear, which was really great news so I am feeling more optimistic about my future! Unfortunately I experienced tissue death above my incision that extended to the nipple (probably from retractor injury). I have finally, after 4 wks, gotten incision to heal and now it all has to be cut out since scar tissue won't hold sutures! I have resigned myself to the fact that I am going to lose the lower portion of the areola since it is all fresh scar tissue. Oh well...could be worse! Guess when I'm healed up I'll just get a tattoo and a bit of "stuff and fluff" to make my girl look more normal!

not looking forward to the tracer injection before surgery but did get surgeon to order some "happy juice" since I can't have local. Hopefully that will make it tolerable. my recent PET scan showed a hematoma, which explains why the breast has been so darn painful since day 8 post op. Hopefully this new incision will heal well and without complications. Last surgery they insisted on giving me pre-,op heparin which guaranteed I'd have a bleed! LOL...told surgeon that I will not allow that this time. He's not happy but accepts that it's my body, my decision.

at any rate...thanks for reading my lil story...as I walk this journey I will no doubt need lots of support from those of you who have walked it before me...i live in rural NV so access to an in person support group is 130 miles round trip (as is treatment). This forum will be my place to both give & receive support!

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  • Sunflowercat
    Sunflowercat Member Posts: 177
    edited September 2014

    welcome and sorry that you're here.  I hope they get good clean margins next time.  I didn't feel the tracer injection, but had slathered my breast in EMLA cream and wrapped it up in tagaderm several hours prior. I didn't feel a thing and the radiologist was surprised.  You might call and ask if that is an option for you.  I have no idea why it isn't standard.  The only reason I knew about the EMLA cream is because I took a BC101 class at my local cancer center.  

    Good luck!

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited September 2014

    Zha-an,

    Welcome to the board. Lots of wonderful, supportive people here.  Check out some of the forums to meet the regulars who are going through the same thing you are. Maybe the lumpectomy lounge, stage 2 sisters, IDC, sept surgery?

    I can relate to a few of the things you've faced so far (hematomas, reactions to meds/glues, IDC, stage 2... testing and so on). My nipple was spared (by 1mm!), but I've met others on the boards who have lost part or all of their nipple. From talking to my PS, they can build new ones from your tissue, or the tattoos.

    Just as a heads up: They will inject the tracer into more than one area of your breast. For me, it wasn't as bad as I thought it would be. I hope the same for you. If they inject a dye also, it will turn your urine blue or green for about 24 hours. (I knew about it, but one of the new hospital nurses did not.)

    Poppy

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2014

    Zha-an, so sorry you have to join us but am glad you found your way here. These women have been a real lifeline for me this past month-plus. 

    I had a hematoma after the biopsies, as well. It seems to be fairly common. 

    Good luck with all the rest of it. Browse around and see if you find topics that are pertinent to your situation; I've learned a lot that's been very useful and hope you do, too.

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  • zha-an
    zha-an Member Posts: 31
    edited September 2014

    thanks so much for suggestions and info! EMLA cream not an option as it is lidocaine based. I am unable to tolerate any local anesthetics...crashes my BP and swells airway! My surgeon ordered some versed & small amt of morphine IV before I go over to nuclear med for injection. Didn't know it could be multiple sites...will get mentally prepared for that! I'm one of those folks who does best w maximum info...so thanks to you all!

    I will post how surgery goes...probably on Thursday. thank you for being part of my support team. I am here for you as well!

    warm healing thoughts...

    zha-an

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  • Ariom
    Ariom Member Posts: 6,197
    edited September 2014

    Zha-an, just wanted to say Hi, and tell you I had a hematoma after my Biopsy too. I was also, really afraid of the SNB tracer, but for me, it was a total non event. I had 4 injections and truly didn't feel any of them. I didn't have any meds or numbing cream. The blue dye was administered in the OR after I was under anesthetic.

    I wish you all the very best! Hugs to you! 

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    zha-an, welcome to this great community full of knowledge and support!

    Besides sharing your experiences and learning from all these wonderful ladies here at the boards, you may also be interested in taking a look to the section  Breast Cancer 101, from the main Breastcancer.org site. It has been designed to help those recently diagnosed sort through all of the information on our site to find what is more relevant right now.

    We hope this helps!

    The Mods

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  • zha-an
    zha-an Member Posts: 31
    edited October 2014

    hi everyone. Surgery went well. Tracer injection was not bad..did it without sedation because pre op just wasn't prepared to handle doing sedation. The doc in nuclear medicine does a single injection w only 1/2 cc of tracer and it really wasn't bad.

    my nightmare began in post op. They are used to dealing w patients who have received long acting local anesthetic to numb the breast and were just plain nasty to me. I am not a baby about pain - I live w a rare condition that causes moderate to severe pain 24/7 and only take meds if my pain is above a 7. I woke up in the surgical suite w off the chart pain and they just didn't give me enough morphine to get it below a 9. At one point I needed to use the bathroom and my nurse used that as the opportunity to shove me into my clothes to send me home! While roughly pulling up my pants she accidentally punched me in my breast and couldn't understand why I cried out. So, I come back from bathroom sobbing and find that they hv removed my bed. The nurse is telling me that she can't give me anything else and that I'll feel much better when I get home. So picture it...I'm in the wheelchair , tears streaming down my face when another nurse starts berating me. She tells me that I've already been there for 2 1/2hrs and she be thinking about my friends waiting for me! Long story short..i made them call my surgeon and he told them to get my pain under control...period or else admit me...more morphine...a bit of a nap and once again the need for the bathroom. Soooo my nurse once again decides that I shd go home, and when I get back my bed is gone...again. At that point I gave up trying to get care and my friends drove me home...an hours drive. I took oral morphine every 4 hrs but still got zero sleep due to pain. I plan to file a complaint this morning. No one shd ever be treated like that!

    but...and it's a BIG but...the initial pathology on the sentinel node(s) showed no signs of cancer! Wahoo....

    I do have a question for those of you who hv gone through this...my fingers are really swollen on the side of my surgery. Is that normal? And my breast is really swollen as well. I'm surprised at how much worse this has been than the original lumpectomy. Is this normal?

    thanks for being on my support team! Hopefully I'll be able to support you in a time of need!

    zha-an

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  • april485
    april485 Member Posts: 3,257
    edited October 2014

    First, congrats on a happy outcome on the nodes! Second, I am so very happy that you are filing a formal complaint about that nurse. She/he should NOT be in the profession if you ask me. Shameful treatment of someone who was going through a very traumatic surgery to begin with. I am appalled! My team of nurses (yup, there were 2 or 3 of them) were awesome and made sure I was fine BEFORE they would release me. My surgeon actually came down to check on me before signing the release to go home and made sure I was medicated well and gave me a script for 20 percs to take with me in case I needed it.

    As for swelling, I did have some on the breast after the re-excision surgery, but not my fingers. Could have been the way you were positioned on the table while they were doing the biopsy maybe? Not sure what is up with that, but you should check with your doctor if no one else comes along and says it is a normal thing.

    Hugs and welcome to the club no one wants to join!

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited October 2014

    Zha-an, I am horrified by the treatment you received! It's too bad that one of your friends couldn't have been back there to help you. I am disgusted by the way they treated you. Don't let this go. Call the administration and complain! Let your surgeon know exactly what happened. If nurses are abusing patients either physically or emotionally, they can be removed! OOOO! I am so mad! I'll go punch that nurse it the boob!

    So glad the nm injection wasn't so bad. Hope you get clear nodes and clean margins!

    Call your doctor about the swelling! They work for you! I had a lot of swelling, which turned out to be a huge hematoma.... but there are other things that could be causing your swelling. Do not hesitate to call.

    If your pain is not under control, let them know that, too. Different drugs work in different ways to control pain. What works for one, may not work for you. I had to have my pain meds changed. You will heal so much faster if you aren't in pain.

    Gentle hugs!

    Poppy

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  • zha-an
    zha-an Member Posts: 31
    edited October 2014

    ladies...thank you for your support and your outrage over my treatment! Reassuring to hear that I'm not overreacting. I did finally get a callback from the risk manager for the hospital. She actually gasped a couple of times as I relayed my experience. She assured me that the issues will be addressed with training or whatever is deemed necessary once she looked at my records . I called and talked to my surgeon's nurse and she said swelling of both breast & fingers is "normal" so I'm just icing frequently and elevating ad best I can. One good thing...since I refused to allow pre op heparin I don't have massive bruising luke before. I'm hopeful that this will help w healing. I really felt that the extreme bruising contributed to my incision falling apart at day 8. I have normal platelet count but a genetic tissue anomoly causes fragile blood vessels so I bruise easily....

    again, thanks for your support. When bad things happen it's easy to think that you are over reacting. Nice to learn that I wasn't! My pain

    is a bit better tonight so hopefully I'll be able to get some sleep.

    warm regards

    zha-an

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