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  • Titan
    Titan Member Posts: 2,956
    edited January 2012

    Husker..tell me more about your mild LE...I occasionally have some breast pain and down my arm..but not in the armpit...my ONC told me to expect this..but I still wonder about the LE..

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Husker- The same thing happened to me with my LE. From the 2nd week of rads my forearm started to swell a bit and hurt too. I showed my RO and asked if it was LE and he said no. When I met with him at the last rad session I showed him again and told him I was about to take a plane for a vacation in 3 weeks time and needed to be sure it wasn't LE or if it was that I needed a rx for a sleeve. But he told me that it wasn't LE and that I didn't need a sleeve for the plane. In the plane ride, my arm was hurting and when I got to Florida my truncal LE flared up and I couldn't wear my foob because it was hurting to much. That was last July. When I saw my nurse in August I showed her my arm and right there she said to me: " You have LE". It's about time someone noticed!!! She told my onc and he prescribed a sleeve. Because it wasn't diagnosed in the beginning like it's supposed to be, now I have LE in my arm (forearm and above the elbow), my hand and truncal too. It's considered mild though, about 4-5% but still, it can be very annoying at times.I have to wear a sleeve, a glove and a compression bra. Having to wear all these compression things can be very unconfortable and very expensive! My DH jokes with me that I should do like Lady Gaga and wrap myself in latex, then I would be all well compressed.Tongue out

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited January 2012

    Titan & Babs,

    I finished rads the end of August. My surgery (lumpectomy) was in Feb 2011 and I had SNB with 3 nodes removed (all negative). BS told me I did not have to worry about LE; in fact, I could get BP's, etc. However I could not get a single nurse to ever draw blood or do IV on that side (thank god). I saw RO and BS in Nov and had a mammo, plus thorough (very) exam. Nothing. I was in a 12 wk support group and a PT and OT came to our group. I was gone that night, but everyone was talking the next week about how they had no IDEA anybody could get LE at any time, even years later. I had been complaining that my bra seemed tight on one side, even though I had lost 20 lbs since tx began. Also was having some range of motion issues, from either rads and/or surgery. I couldn't figure it out, just figured I had swelling but it never DAWNED on me I could have LE. Gal in group suggested I get an eval, so mainly on a whim I did. And I had LE around incision site (she could tell by redness in the area) and in armpit, marked by tightness/swelling. The OT was sooo upset that the surgeon had said I didn't have to worry; she practically had tears in her eyes, was sooo glad I came when I did, etc. I don't need to wear a sleeve except to fly, but she is suggesting a compression cami and/or bra. Am trying right now just to wear snug camis (the kind that are supposed to slim your tummy) and see if that helps. I could tell a difference after 2 treatments and my range of motion has improved 25 degrees after three weeks. I made sure she sent her eval to the BS, RO, MO, and PCP. It could have just started, but given how long I've had the bra issue I don't think so. I think everyone should meet with a PT or OT trained in LE prior to treatment or at least immediately following. Doctors do not know LE, sadly.  

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  • TryingToSaveMom
    TryingToSaveMom Member Posts: 16
    edited January 2012

    After four months of doom and gloom surrounding mom's diagnosis, then surgery and then tons of tests and appointments, at last a little ray of sun - mom's test results and scans came back clear. She'll start chemo next week - still scary but at least now we have more hope for her. What a difference a day makes! We'll take the good where we can and hopefully it'll help us all get through this.

    I hope all of you get some good news in the days to come too.

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Husker- When my PT saw my LE and when I told her what my RO told me all along, she was mad and sent him a little letter. She too doesn't understand why they don't see LE.... I spent November with my PT, 3 times a week for LE massages (she showed me the massages method too) and wrapping. I had to stay wrapped between appointments (48 hours) and THAT wasn't fun! The wrapping seemed to work for my arm but not for my hand. In the night, my hand used to swell like crazy when wrapped. And in the end of the 3 "intensive wrapping" weeks, my hand ended up bigger then when I started the whole wrapping thing. So I stopped. Now it just massages, sleeve/glove.  Be sure to wear a compression bra too if you fly because LE does flare-up in that aera when flying, and it's no fun. 3 weeks ago I took a plane to Florida and with all my compression stuff, I did fine.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Me, too, Husker - the pain I am having does not seem normal - (what's normal - I know most of us no longer know!!)  I know what you mean about RO's being asses....I need a break from all the med profs. My BS is a lovely person, but she does not always present the entire picture. She leaves it up to my MO to give me the negative info about my path report and he does not even bother reading it. Thank goodness for google and this forum!  My GYN is the only one who gives me the whole story. She believes in facing the worst head-on and being proactive. 

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    Titan- my onc unhooks my bra, does his exam and then hooks it back- very weird feeling!!

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    OMG - I would not like the hooking and unhooking done by someone else. That is weird!!!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    I have to admit having your dr undress and redress you is pretty strange and I might feel a bit uncomfortable.    I haven't really had an exam with my onc yet, today will be the first official one.  I'll have to see what thier procedure is.  During chemo when I questioned some scar tissue, his female assistant had me lift my shirt and unhook my bra so she could feel around he wasn't in the room yet and hubby was. 

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  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    TryingToSaveMom - Great news!

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  • gillyone
    gillyone Member Posts: 1,727
    edited January 2012

    Yeah - my onc unhooks my bra. He always asks if I need help fastening it. I always say no even though it is really hard to do and I'm "happy" as long as I get one hook done. As I'm lying there with bra and shirt round my neck he also unzips my jeans and checks the lymph nodes in the groin area then zips me back up.Embarassed

    I find it all weird and don't understand what they are thinking. It's easier for us not to undress? I would rather gown up in private than fumble with my clothes like a teenager in front of the onc.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    I completely agree! Give me a gown anyday.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    ,,,maybe no gowns as they are trying to save on laundry costs....lol

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    When I see my doctor/oncologist, I automaticaly take my bra off and shirt myself before he has a chance to do it himself. I figure that that's what's going to happen anyways so better do it myself. It doesn't bother me anymore because I feel that since BC, I have taken my bra off so many times for so many doctors, RO, rads techs, scan techs,US techs and so on that as soon as I'm in a doctor's office, I just think I have to take it off! Tongue out

    Suze- Hope you are feeling better and that you are back home.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    Don't you guys get instructed to wear the gown and take off your bra, when the nurse takes you to your room?  That way you are already prepared for the doc.  I would feel very very strange if my Onc. or any other doc unhooked me.  Once or twice my Onc. has examined me, without the nurse present and that felt weird.  He mentioned that he is no breast expert, but then what is he looking at?

    Gillyone - what?  he what?  unzips your jeans?  One other Onc. who is supposedly the biggest expert in Onc. had never seen or felt my lump or even after surgery as he has never examined me physically, as he told me he is the doc who will be treating the cancer in the body.  From that conversation I felt that BS should be the one checking you, touching you and doing the B exams, never the Onc.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Sad, but funny, Babs. On the other end of the spectrum, I have put gownns on and taken them off so much that I actually made it to the outside waiting room before someone told me I still had the darn thing on. For rads I always had to gown up, but leave my pants on. So last week I just grabbed my coat off the rack and headed for the door. Too funny. 

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012
    Anandagram- Too funnyLaughing
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  • Hope60
    Hope60 Member Posts: 223
    edited January 2012

    TryingToSaveMom - that's great news!

    Babs and Anandagram - so funny!  My BC experience has taken away any modesty I might have had before.  I feel like half of New York City has already seen my breast....if anyone else wants to see it, they just need to ask :) 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    OK ladies.  I highly suggest you make and bring your own "exam gown" and take it with you to appointments.  I made one for radiation treatments and brought it every day so I didn't have to wear the horrible hospital ones.  It will take you ten minutes, I kid you not.

    Take a tshirt and cut it down the back.  Take two pieces of ribbon long enough to make a bow and sew one on each side by the neck seam.  You can do just a few quick running stitches and it will hold up.  Then take two pieces of ribbon and sew them on about halfway down the back, also be sure they are long enough to make your bow.  If you want to get a little fancy, get some iron-on hem tape, iron on two long strips close together down the middle of the back then make your cut down the back between the strips.  Tshirt material doesn't fray, but it will curl a bit.  The iron-on tape provides a little structure.

    Wear it under a zip-up hoodie and you're ready for any request to be examined without having to ask for a gown!

    Tif - does he have a nurse present when he's doing that exam?  I was trying to remember how it went for me; I think my DH was usually with me.

    Gillyone - your experience would give me the creeps!  I'm glad I now have a female MO!!!

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Please bear with me if you see me post this on other threads. It normally would not be a big deal for me, but I know all of you will understand that it is now! I just emailed my local school district's personnel director to advise her that I plan to return to subbing next Fall. She wrote back that they will be very pleased to have me back. 

    NEXT FALL - wow, this is the first time in months I have thought ahead about anything except treatments! Who knows what can happen by next Fall? I know this - but it does feel good to have some kind of plan for the future.  

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Great idea, LuVRving- Thanks. 

    Yes, the unzipping of the pants would really do me in! 

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    My onc always examines my breast without the nurse present. He did ask me last time if he could call the female NP in so she could see what an awesome incision site I had for my lumpectomy. I said, 'Sure, whatever"....

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Another funny thing that happened to me was that, you know when you are in active treatment you have to "flash" your hospital card everytime you go to the hospital (and we all know it's often!). Well I used show it sooo many times last year that one time, last spring, I was at McDonalds and when it was time to pay, instead of handing the cashier my debit card, I handed her my blue hospital card and I was there waiting for her to take it but she was just looking at me weird.  It took me a while before I realized why. My sister was with me and she laughed so hard............

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Oh Babs, that's a good one!

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    Michelle- the nurse is not present, but he is quick and I don't get that pervert feeling from him. I had a gyno back in my 20s that I went to once and he creeped me out and I felt really weird with him so I never went back. Now if he asks me to unzip my pants, then I will be weirded out!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Gosh... I must be a "simpleton". I just wear a cami and cotton sweater... or anything else that goes up and down easy. My onc does a BE and then I just pull my sweater back down. KISS!

    Heidi (having pizza and eating home-made choc chip cookies after a nice day of teaching)

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    I remember my first exam with my first onc.  He did have me put on a short paper gown and after the top half exam he had me unzip to feel the lymph nodes there but my husband was there and it wasn't weird at all.  Had he unzipped me, it would have been strange.

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  • Luah
    Luah Member Posts: 1,541
    edited January 2012

    Okay, I'm feeling very privileged in our government-sponsored health system - I ALWAYS am given a cotton gown to change into, for any exam. 

    Anandagram: yes, it does feel good to move on and make plans - congrats!

    tryingtosavemom: So glad to hear your mother's scans were okay. I remember I was convinced I was going to die within the year when I went through all that scan anxiety. The truth is that most women who have early-stage breast cancer are treated and survive... no reason your mother won't be one of them and live to a much riper old age.     

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2012

    Just stopping in and waving HI LADIES. Very busy at work lately not on much. Funny life keeps right on moving no matter what. Sending warm vibes to everyone.

    Suze you are awesome (can you feel my tears)!!!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    Just got back from my follow up visit.  All was good.  Bloodwork was perfect they said.  I asked about my tumor markers, they are at 7.9 and the normal range is 0-38, they said that was good.  Shouldn't they be at 0 though? 

    asked about metformin and dr was reluctant to put me on it, says there's too much of a chance I could go into coma.  He did tell me to have my family doctor test my Hgb A1C and go from there.  Sort of forget now, so I will have to google that one.  He seemed somewhat impressed when I asked about Zometa, scheduled a bone scan for me on Monday, provided I fit into the criteria he'll give me the Zometa.  Other than that he said I could be taking a calcium supplement in addition to my reg Multi-vitamin.  I think that covers some of what we've discussed.  His assistant did say cinnamon helps lower/regulate your blood sugar. 

    Onc left room and his female assistant did physical, I just lifted my shirt and moved my bra down.  I told her about it being our latest topic and she said that they don't usually do gowns because they have found it makes alot of people uncomfortable but would do whatever makes me happy. 

    Sorry, had to share my doc appt, very happy to be NED right now.  Think maybe this is the first time I'm starting to accept it. 

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