August 2010 Mastectomy

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  • Halah
    Halah Member Posts: 352
    edited September 2010

    When I drive, my shoulder strap is close to my neck and I've lowered it as far as it goes. Have y'all run into this problem? If so, what has worked for you? I have this sort of big square pillow which is definitely working, but I am sure I look ridiculous with it. ;)

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010
    Winterstorm I keep a pillow in the car too bu usually I jsut put my ahnd bag on my lap and that keeps the strap away from my body.
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  • lago
    lago Member Posts: 17,186
    edited September 2010

    I'm still numb. I don't feel the strap. Not sure if I'm happy about this or not.

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  • Paula1231
    Paula1231 Member Posts: 456
    edited September 2010

    Mindy

    The Hospital gave me two tiny pillows with fun paisly designs on the little cases.  They told me that ladies in a senior center make them for the breast MX ladies.  Its about 8 in X 5 in and I wear it under the seatbelt.  It is just awesome.  I also used them to prop up my arm post surgery. 

    Carrol2, thanks for the post.  I will find out on Monday.  I am hoping that if I have chemo, it will not be too aggressive.  Please let me know how it goes for you.  I think we will be in the same boat.  We can do this.

     Paula 

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010
    lago it probably depends on where the strap falls on you. I am still numb too at my incision sites and on my right side where I had the  lymph node removed. The strap hits me at my nexk and collar bone sometiems it falls lower  where my port is.
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  • lago
    lago Member Posts: 17,186
    edited September 2010

    I don't have a port yet. Gee, something to look forward too… :-(

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010
    lago well not everyone gets a port. I actually asked for one although not sure why now, but I had them put it in during my surgery. I thought Iw as going to need 8 treatments then. But it's only going to be 4 now. 
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  • lago
    lago Member Posts: 17,186
    edited September 2010

    I too asked for this to be done at surgery but they said I was already getting too much done and it's up to the oncologist to decide. But I knew I would be getting a port because HER2+ gets 1 year of herceptin. I'm doing 6 rounds of chemo. When I did meet with the oncologist she didn't discuss it. She just gave me the business card of the surgeon who does ports and said to make an appointment when I was healed.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010
    lago I wold not worry too much about getting that put in I talked to many women and it seems pretty easy on you.
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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Not worried, actually happy to have it. Who needs tons of needle sticks. I have great veins but there are techs that still screw up/don't know what they are doing and I end up bruised.

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  • Halah
    Halah Member Posts: 352
    edited September 2010

    I have horrible veins and would need a port myself. Lago, I still have numbness and it is quite unsettling. Paula, wish I knew where I could get some pillows like you described! I either use that big pillow I mentioned before or I use my hand to lower it off of my neck.

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  • lago
    lago Member Posts: 17,186
    edited September 2010
    WinterStorm: Would a folded up towel do the job? Also don't sweat the numbness. It can take up to a year for it to go away. We might always have some (very little if any according to both my BS & PS) but most of it will come back. Hang in there. We are barely 3 weeks out!
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  • Halah
    Halah Member Posts: 352
    edited September 2010

    I could try a folded towel, great idea! That would certainly fill up some space. My surgeon told me that the numbness might not come back but can't know for sure. Needless to say, I am not very fond of him. Can you believe it is only three weeks out?? Three weeks tomorrow for me, and my two month anniversary on tuesday for my dx of cancer. My, so many changes so fast!

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  • Paula1231
    Paula1231 Member Posts: 456
    edited September 2010

    Mindy

    If you PM me your address I will send you one.

    Paula

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  • RobinLM
    RobinLM Member Posts: 143
    edited September 2010

    Hi everyone

    I was numb, but just yesterday, everything seems painful to touch. My partner is massaging me every night and on saturday my beauty therapist friend massaged me. The fluid pockets are definitely reducing but becoming more tender..... getting lots of twangy pains..... I'm guessing the nerves coming back to life..... uggg.... I've had enough of this and want to feel normal. I'm 3 weeks tomorrow as well Mindy, I think I didn't really understand how bad the implants would be.... Trying hard not to feel sorry for myself.....

    x

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  • Paula1231
    Paula1231 Member Posts: 456
    edited September 2010

    Robin,

    I hoarded about 10 oxy and when I "hit the wall" I take one at bedtime.  The extra unconscious sleep without all the twangs and soreness gives that extra bit of rest that will keep the blues away.

    Three weeks is the point at which every day that follows will be just a tiny bit better.  Be good to yourself and do not over do.  It helps to take a multivitamin and some D and B stress complex every day.  It will give a bit more energy and help you heal faster.  I am still on the iron the hospital prescribed and they want me on it for two full months. Hang in there Robin, it will pass, and soon you will be doing more and feeling much better.

    Huggs..Paula

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Robin I too notice as the numbness goes away the "sunburn" starts. Mostly the arms but that is starting to get better. My chest is still fairly numb although I do have some of that rubber band feeling in the morning. Still very doable for me… but I too am ready to move on from this to the next experiment (chemo).

    My range of motion is getting a bit better but  not fast enough for me. Physical therapy starts tomorrow. Today is MUGA and chemo training… Oh what fun ;-)

    I still have all my oxy and some other drug that isn't quite as strong. Guess I have been really lucky not to need them so far. Hand in there.

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  • Paula1231
    Paula1231 Member Posts: 456
    edited September 2010

    Dear All

    Here is a really informative powerpoint I found when researching OncoDx:

    Breast Cancer

    File Format: Microsoft Powerpoint - View as HTML
    This is the most common type of breast ca, accounting for 8 out of 10 invasive ... Genotyped tumor tissue DNA for CYP2D6 variations in 1325 breast cancer .... In the Onco DX risk score is high (>31) the rate According to the ...
    ccr.cancer.gov/careers/courses/traco/./Zia508TRACOr09.ppt -  

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  • RobinLM
    RobinLM Member Posts: 143
    edited September 2010

    thanks for the support girls..... had to resort to calling the Dr, got a prescription for Tramadol, an opiate pain killer, took one and it's got a bit better......don't want to take it all the time so will take them only when I have to - maybe another at bed time ......I do have a stronger painkiller, diclofenac (NSAID) but I can't take it as it gives me raging abdominal cramps...... I'm hating this drug dependency.....

    Got my Path report today.... was a very strange feeling to read about your own nipples etc being sliced up for thin section.... There was multi focal LCIS in both breast with adenosing stenosis etc, also something ductal - falling short of DCIS. So, despite the discomfort I have right now, I know I did the right thing.....

    Anyone know any sites for post Op massage? I'm wondering whether we are doing it too hard or incorrectly and thats what's causing me the pain.....

    Good luck for tomorrow Lago - what is MUGA btw?  remind me, have you had any fills yet?

    xx

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    MUGA is a scan of your heart to see how it functions, pumps blood. Herceptin can give some folks heart issues. It's not common but they do want a baseline of how my heart functions if I should have problems. I was told today that they won't test again unless I have issues.

    I had my first fill last Wednesday. My second is this Wednesday. Not sure how many fills they need to do. I don't feel that much smaller than my old self. Told the oncology nurse today that I really can't see myself getting a mastectomy bra. It will end up making me bigger and none of my shirts will fit anymore ;D

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  • Nbb1032
    Nbb1032 Member Posts: 74
    edited September 2010

    RobinLM - I do remember that the 3 week point was very tough.  The numbness has worn off and the
    "sunburn" starts.   It does get better.   I have to say though that I still have nerve pain under my left arm that seem to be going away very slowly.  And my last fill (I'm up to 500cc) has been uncomfortable.  You didn't have tissue expanders though did you?  You did an immediate implant?

    Lago - sorry you have to do chemo.  If you need some direction on what size you want to be in relation to the TE's - Whippetmom over on Implants 101 will help you.  Check out that thread if you haven't already.

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  • Paula1231
    Paula1231 Member Posts: 456
    edited September 2010

    Hi Nancy,

    I really wanted to thank you for starting this thread.  It has been a candle in the dark for me.  I have at times cried while reading, but the information has helped me thru each obstacle.

    Paula

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  • Pawprint
    Pawprint Member Posts: 464
    edited September 2010

    Hi Everyone...My PS called and set the date for my exchange surgery for Dec 1. Just like i wished for Gummies by Christmas. My onco score of 8 states too low to benefit from Chemo, so its still Arimidex and Fosamax and Effexor medications for me. Will be checking tumor markers in 2 weeks and liver scan again in 6-8 weeks.

    It will be so nice to get these tissue expanders out, but so not looking forward to another surgery. I hope I wont come home with those drains in me again. I also hope I can move my arms and not have much pain.

    Getting ready to do a relay for life cancer walk in Lake Elsinore CA. My team is called Amazing Grace. My friends and family have rallied around me and we have 26 team members for this 24 hour event. Our team purpose is to bring awareness about BC, raise funds, remember those who fought breast cancer. We are camping overnight. We have to have 1 team member walking on the track at all times during 24 hr period. Good thing we have enough people to switch off.

    Thinking of all of you and following your threads. Sending you all hugs and well wishes.

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  • Nbb1032
    Nbb1032 Member Posts: 74
    edited September 2010

    Paula, thanks. 

    I first started this thread because I  really believe that knowledge is power and that the more we know about this disease the more we can act as our own advocate to get the best care we deserve.   I was hoping we all could learn more from  each other's personal experiences.   I didn't realize at the time,  but  I soon learned,  that sharing the emotional journey through this horrible disease was the most important.  More important than any information.  You all have helped me to stay grounded, to keep laughing, to be brave, and to keep going even though I wanted to give up at times.  For that, I thank you.   I know it sounds silly, but as each one of you came over to "the other side" it felt like a real accomplishment to edit my post and write "done!" next to each of your names (even though we all know that with this disease you are never "done"). 

    I know quite a few of you are doing chemo, which is a whole other challenge to go through.  I feel very lucky and blessed to have "met" each and everyone of you and wish you the best on your journey.

    Nancy

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Nancy… what a nice note. I too feel a real sisterhood with this group. I'm on a lot of threads but this is one of my top 2, OK my top one but I don't want the other sister thread to get mad at me ;D

    BTW I always knew I'd be doing chemo. HER2+ almost always gets chemo. I was so happy to find out it was just 6 rounds/4.5 months. I should be done around my birthday. I hope I can get out of radiation. Not sure I will be so lucky though.

    Robin the physical therapist showed me how to massage my scars today. You really don't press down all that hard at all.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010

    lago massage your scars? why is tha to help with the tingles?

    I jsut found out my PS has a 1 1/2 year wait. I can;t believe I will have to stay like this that long. I ma trying to find someone else but it is so difficult to find one that takes medicaid.

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    I was told to massage my scars to soften them up. They are a bit tight under the arms (especially the left where they took out 10 nodes) and that's part of what is limiting my range.

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  • Carrol2
    Carrol2 Member Posts: 2,903
    edited September 2010

    I am tight by my arm a bit too they only took one node. I am going to see a physical therapist to see what I can do. 

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  • Halah
    Halah Member Posts: 352
    edited September 2010

    My surgeon only took two nodes and he said that if one or both were positive for cancer that I'd need more surgery. I'm glad he did it that way. Sorry you had to have 14 nodes taken.

    My scars are tight, too. The place where they took the nodes (one on each side) looks like a snag in a sweater where the strands get bunched up. It seem to me like he took way too much skin overall. I'm afraid I won't get range of motion back. But I'm tryin'! 

    Someone at a support group yesterday suggested a physical therapist. I think I'll look into that.

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    I'm not sorry I had the nodes taken. I totally understand why. Given my tumor was so big, aggressive and HER2+ statistically there is an 80% change my nodes would be invaded. Even though my BS felt  nothing and the MRI indicated they were fine (would typically mean only a 30% chance) there could be a micro invasion. If he only did a sentinel on left we might never know if there was a micro invasion in one of the other nodes.

    I was so excited to find out they were clear… even the BS nurse was excited because I think I was the only one that believed they would be clear.

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