December 2011 Surgeries - want to wait together?

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited January 2012

    Kaara - that's great news!  When/how did the surgical glue covering the incision come off?  Mine is just starting to peel a bit.

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  • Kaara
    Kaara Member Posts: 3,647
    edited January 2012

    faith:  It took a while, in fact, there are still some little pieces clinging to my skin.  Just let it fall off naturally..don't pull at it.  My BS said some baby oil or mineral oil will help.  I can hardly see the scar.

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited January 2012

    Wow!! It sounds like everyone is recovering nicely!



    Janiebug - I just had my second fill yesterday. While the PS was filling - I said "plump when you cook em". I still feel like that part of my body is still not apart of me. Weird.... Let us know how long before they schedule exchange.



    I am going to PT due to cording. That has been the biggest bummer out of this whole thing...and the dryness that comes with tamoxifin. I feel like a raisin with one arm. :)



    I hope you are all doing well.

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  • chrissilini
    chrissilini Member Posts: 313
    edited January 2012

    CarolAnn...I think I'm having some cording issues too. I'm 7 weeks post op, bmx with te's and last night I went to the ER because my left arm was swollen in spots and it hurt to extend my arm. I think now I was freaking out a bit but the first thing that came to my mind was a blood clot. I work at the hospital I went to and see so much. That combined with all that's happened in the last couple of months got me nervous.

    I have an appointment with my BS tomorrow. They did an ultrasound last night, no clot. But the ER doc wasn't really sure what it was. He didn't think it's lymphadema and spoke with my BS who doesn't think so either. I've read a little on here about cording and aws and the description sounds just like how it feels. It's not a constant pain though and seems to be worse after I get off the treadmill. Weird. Hoping this isn't something that will stick around forever. I've been doing so well and trying to put this behind me the best I can. Didn't need this to pop up. Nobody does.

    Hope everyone is healing well.

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Wow, good to hear you are all healing so nicely! I had my Bilateral Mastectomy on 12/20 and my insicion still has open pockets and is not healing. My PS told me today he never sees this, and if it doesn't heal in two weeks he may have to clean it up as he says and restiched some of it...grrr.



    He said if I need chemo I can't start it until he gives the OK because I have to heal first. Then we can talk about fillers.



    Cookie, do you have to have chemo? I'm waiting on Oncotype score tomorrow, nervous!

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited January 2012

    Bogie - My oncotype was 14, so no chemo. I got very lucky, no chemo no rads. Just 4 surgeries so far and one or two more to come. I hated waiting for the Oncotype. Hopefully tomorrow will arrive very soon.

    -Judy

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Cookie ill keep you posted on Oncotype. Enough surgeries for you, and congrats on low score:)

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited January 2012

    Bogie - I am sorry that you have the pocketing. Such a pain....



    Chrissilini - I knew I had a problem about two weeks ago. I have been doing gentle excersises and there was a pain in my arm - inner elbow, armpit and down to wrist. I can't straighten out my arm. Yesterday, when I met with PS, he confirmed. He is sending me to Physical Therapy. Part of me wants to leave it alone and baby it forever - the other part of me say "suck it up" and do the painful PT. I have found lymphdema therapists in my area, but none are with my insurance. So, $85 out of my pocket each visit. I do not have lymphedema - I have cording....don't want to mess and make worse.

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Carolann, what is chording?

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited January 2012

    Auxiliary Web Syndrom -cording. It is tightness when there has been trauma to lymph nodes. A tight cord that you can feel under your armpit and down your arm. Kinda painful. I'm learning....

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Does arm stretching exercise alleviate it? It's not the start do lymphadema though correct?

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Has anyone gotten lymphnodes biopsies instead of removed? I didn't know they can do that. Why did the surgeon take out 5 of my nodes during surgery instead of just biopsy them, they were benign.

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited January 2012

    Bogie - they are pretty small and hard to find unless they are enlarged. Normally they will find the sentinel node and biopsy that one before going in for more. Mine didn't even know how many he took during surgery, he just took patches of tissue and the pathologist sorted it out later.



    Many people get cording and or web syndrome but don't develop lymphadema. It is maddening that breast surgeons take the nodes but don't adequately communicate risks and follow up. Mine told me next to nothing. I do stretch mine every day and it gets better every day, although it is a slow improvement. I have pencil lines on the wall to mark progress. What really shows signs of web syndrome is holding my arm out prependiculary to my body and feeling the pulling pain at my elbow. I count how many seconds it hurts and how much. I also use the squeeze ball. Good luck!

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  • Bogie
    Bogie Member Posts: 286
    edited January 2012

    Faith that's my point, why do they biopsy some women before surgery and biopsy without disection and others like us they remove and biopsy. Then they are removed and that is that, too late and at risk for all this crap like lymphadema. QI thought my surgeon said he has only one chance to go in and get them to test during surgery, so test them don't remove them! I had the dye injected per surgery with my bilateral masectomy.

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited January 2012

    Bogie - to do the biopsy, they have to remove the nodes. Basically they take out a few nodes and biopsy them, and then depending on the restults of that they may take more nodes. My BS told me that they would not be doing the biopsy during surgery on the sentinel nodes because recent research has shown that taking more nodes, even if they're positive, does not improve prognosis, so they just take the sentinel nodes and send them out to pathology. Sentinel nodes are what they take first and then if they take more it's called an axillary node dissection. My BS doesn't do axillary node dissections anymore so I didn't have to deal with that, but she still took a BUNCH of nodes, mostly because there was a group of super tiny ones. Does that make sense?

    -Judy

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited January 2012

    Bogie - with me, he took the sentinel node and biopsied it while I was still under, it came back positive so he moved forward with the axillary node dissection.  He agrees that the community was on the verge of agreeing that it wasn't the best method to measure prognosis and reoccurence, but said it was still the current protocol to do a full axillary node disssection.  I found this out the day before my surgery and really wasn't in the position to debate or research.  I knew I had chemo either way and mildly debated that it didn't make sense to take all of them if I was going to have further treatment, but I wasn't willing to delay the surgery.  It is possibe with you, that his intent was only to remove the sentinel but because they are so small and close together he removed 5.  I wish my BS had the same opinion as Cookie's, and hopefully all will soon follow this protocol.

    I completely understand your frustration...I was very upset (and still am concerned for my lifetime risk) but all I can do is move foward.

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  • Kaara
    Kaara Member Posts: 3,647
    edited January 2012

    My BS said only SNB...no need to remove others, even if positive, and that radiation could take care of those.  As it turned out, mine was negative and my margins clear.  I had no risk of LE and I healed quickly.  Rads were recommended as "standard of care" but I opted not to do them.  I prefer diet and lifestyle changes to prevent recurrence, but that is something that I would not recommend to anyone...it was just a personal choice for me.  

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  • chrissilini
    chrissilini Member Posts: 313
    edited January 2012

    Just got back from my appointment with my BS. I do have cording so it's off to PT. She said that lyphadema is not common with SNB. The 'sentinel node' is the first node that drains the tumor. In order to find it, they inject a radioactive substance that's carried by the lymph fluid. In surgery they use a gamma-detection probe that detects where the radioactive subs accumulates and this is how they know where to take a sample. Some docs use the blue dye too. My BS nurse said the sample they take out is like a fat pad that can have several nodes.

    My BS never told me this could happen. Am I mad at her? No. Would it have been nice to know some of the possibilites so that I'm not making trips to the ER when something comes up I'm not expecting? Yes.

    If my sentinel node had come back positive she would have done a complete axillary dissection. Luckily that wasn't needed.

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  • Kaara
    Kaara Member Posts: 3,647
    edited January 2012

    chrissilini:  Thank goodness for you that didn't happen!  Axillary dissection is so unnecessary with the studies that are out today, and the lifetime SE's are not good.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2012

    Kaara, so happy for you! YAY.Janie bug, hope you can exchange soon.  Cookie, DCIS is the diagnosis to have if you have to have BC.  I am happy for you.  Bogie, bad days come and go.  Someone being nice is usually the kicker to start me crying.  The mean people usually just make me meaner!  LOL.  Love to all!

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited January 2012

    I've been healing nicely and fills are going well....hard to believe, since I was such a big baby here when I first got home from the BMX! I just never thought the day would come when I didn't feel like I was dying from the TE pain. Now, it's - to use that awful word - DOABLE.

    I'm happy that I have good range of motion, but I still have quite a bit of underarm pain where they took three "sentinel nodes"...(not just one)...I didn't need axillary dissection, though. But this morning, stretching in bed, I felt something like a skinny rope deep inside my armpit. Yikes!

    Pleased as I am with healing, though, I was really ticked off that never in this journey did a medical professional stress to me the possibilities of LE. Oh, it was mentioned in the tons of literature I was given, but no one really talked about it.

    I even went to a "Post Mastectomy Physical Therapy and Lymphedema" workshop a few weeks ago. Huuuuuge waste of time! More blah blah blah about other stuff, and a two-page handout on where lymph nodes are located in the body. I think there were some minimal suggestions for massage. And there were only two of us MX patients there...it could have been SO much more personalized!

    So yesterday I got a referral to the LE "Specialist" at the hospital. I'll see her on Monday.

    Dang, sometimes ya just gotta keep hammering away to get what ya need!!!

    Big hugs to all my December sisters....and special prayers for all those facing challenges right now.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2012

    Blessings, it sounds like "cording" rather than LE.  massage and excersice seem to be the answer to that.  I don't have the range of motion on my left that I do on my right, but that is because of the latest surgery for my te removal.  Look up cording- and you probably found it early enough to keep it from getting worse.  good luck.

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  • chrissilini
    chrissilini Member Posts: 313
    edited January 2012

    Blessins...sounds like cording to me too. My BS had me feel the area she was palpating and that's exactly how it felt. She told me that LE doesn't generally happen with SNB but it may depending on how many nodes were taken. They took 3 of mine at the time of my bmx. It'll be interesting to see what the appointment with PT will be like. Sure hope it's with someone familiar with all of this.

    Prayers and hugs to all.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited January 2012

    Thank you, Moonflwr912  and chrissilini  - I think you may be right about the cording.

    Yep! I'm expecting to see an EXPERT on Monday!!!! Will report back here...

    xoxoxo

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  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited January 2012

    Blessings-Good luck on Monday.

    I had my first PT appt today-no lyphedema, so she's going to work on my frozen shoulder.

    Hope everyone has a wonderful weekend!

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  • Janie-bug
    Janie-bug Member Posts: 181
    edited January 2012

    That is soooo....... awesome Kaara.. Love the power of prayers!!!!!!!!!!!!!!!!

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  • Janie-bug
    Janie-bug Member Posts: 181
    edited January 2012

    I have the cording also. I can feel the tight "cords" under my arm were the l0 lymph nodes were taken. I am so suprised that so many of us are having this. NO ONE said anything to me about cording. Lymphedema was mentioned but nothing about cording. There are no LE specialist in my area so I will have to drive a 100 miles away to Knoxville TN to get PT....GRRRRRR. I have appt for Feb 23 any suggestions as to what I can be doing in the mean time to help with the cording

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  • fitzdc
    fitzdc Member Posts: 1,467
    edited January 2012

    No cordng here or any SNB issues; mine are with the scar on my back - it still itches like mad!  (I remember my grandmother had a back scratcher thing; I would give anything for that little item!)Today finally received my out of state hopsital records for the MO - met him a few weeks ago but until he had the opportunity to review my records we could not move forward with AIs - and I am still on the fence about those.  Will learn more on Feb 13.  Have a great weekend everyone.

    Teresa

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  • CarolAnn6
    CarolAnn6 Member Posts: 44
    edited January 2012

    I see a PT for cording on 2/16. First available date. What has helped is stretching each day and using the squeeze ball with my arm elevated in front of me.



    I hope that everyone with cording issues is healed with PT and with time.



    Have a wonderful weekend all -

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited January 2012

    Just an FYI that even with just SNB you can get LE. I did and have it in both arms. It is not too common but it does happen.



    Fitz-I wanted one of those back scratchers so badly after my BMX. I know we used to have one but must have gotten rid of it at some point.

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