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Class of 2009 - Sisters in the same time frame

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Comments

  • fmakj
    fmakj Member Posts: 1,045

    One-L - I took a week off after my lumpectomy and SNB surgery.  I went back part-time and it wasn't bad - I just made sure that I didn't do ANY lifting.  I am pretty lucky that I am able to work whenever I feel the best to do so.  (I went in this morning and again after supper tonight as my tx was after lunch.)  You do have to listen to your body and don't overdo it!  I find that with rads I need a "nap" when I get home (20 - 30 mins) and I'm good to go again!  Off to bed now as I have an earlier tx tomorrow!  Will be keeping you in my thoughts and prayers tomorrow... it is a long day, but don't worry, you will be kept pretty busy!!

    Be Well All!

  • Beach
    Beach Member Posts: 16

    Jen--Sorry it took so long to respond to your post but rads have been consuming my time lately.  The pain I was describing is more at the back of my upper arm and it might actually be from the positioning of my arm for rads.  My underarm is just a little numb still but no pain like after the surgery, so don't worry as it will subside but can take time.......keep doing those exercises as they really do help!

    One-L--My thoughts and prayers are with you today.....it will be a long day but you will get through it.  Please report when you can.

    Kim--I'm so with you on taking time to heal both your body and mind.  This disease and tx has taken so much out of me and I truly wasn't prepared for how it affects our minds.  I finished chemo abruptly end June (after 5th cycle due to a severe toxice reaction to Taxotere), will finish rads on Aug 27th, then start Tamoxifen and Herceptin continues until May 2010.  I've been off work since the end of March........yesterday my boss emailed me to say "Glad to hear you're finally feeling better from the chemo.  When will you be coming back to work?"  WTF??!!  I called him to give him the straight goods on what this is all about and how taxing everything has been and still is.  I then told him that I'm not able to answer that question at this time.......it was very upsetting and this added stress is the last thing I needed Yell!!  Oh ya.....and I've been pushed into menopause because of tx......men just sometimes don't get it!!

    Everybody who is starting chemo.......sorry about the rant above......warm thoughts and gentle hugs being sent your way.  We're all here for you when you need support, have questions or just want to rant ((( )))

    Everybody else I missed.......so glad this thread is here and what a supportive group!!  Thinking of you all.

    Must run.....just got back from rads and now must run to the dentist....so many appts, no wonder my energy is compromised Undecided 

    Sandy

  • jburke1
    jburke1 Member Posts: 258

    Hi Beach,

    No apology necessary. Can you tell me a little more about rads? How do they make you feel and what side effects come from them? I don't know my treatment plan yet ( I will know on the 25th), but I do know I will have rads for sure. Just want some idea of what I am in for. I have read up a little on them, but text book and real life are never the same.

    Thanks! and hope everyone is doing well

    Jen

  • one-L
    one-L Member Posts: 653

    I am home from my surgery, it was a very long day, but we all made it through it.  I am not as sore as I expected, but that may come later today or tomorrow.

    I go back to DR on Tuesday and get the drain removed and get the path report.  He did the lumpectomy, SNB and removed 3 other nodes. 

    I am at least up and moving around this morning, without much problem.  I am getting use to everyone waiting on me.  I think I could get to liking this.

    Well enough about me, how is everyone else doing today.  I know there were others who had surgery yesterday and starting other treatments.  I hope all went well for everyone. 

    I am at least getting more experience in this and will able to give my experience to all the newbies.  It is experience that I didn't want, but am getting anyway.

    I have also been preaching for everyone to get mammos and checkups, and I know of at least 5 people who have had mammos since I have been diagnosed.  It is not something that anyone needs to put off.

  • jburke1
    jburke1 Member Posts: 258

    One-L it is so nice that you are up and about! I am glad thing went well for you. Did you find out if the nodes were clear or will you get that info when you go back? Having people wait on you is nice, something I am still trying to get used to! I am hoping that after my next surgery on Monday that I am up and around sooner than after the lumpectomy. I am getting anxious about my next surgery, I don't even know why, it should be a piece of cake compared to what I went through with my other surgery!

    Take care of yourself this weekend and don't do ANYTHING you don't have to do!!! And if preaching to other women about getting mams and them actually doing it is the good that has to come out of this mess, then rock on sister!!

    Take care of yourself

    Jen

  • pj12
    pj12 Member Posts: 18,108

    Hi jburke1,

    Everyone's experience is different so mine might not apply but:

      THINGS NO ONE TOLD ME ABOUT RADIATION TREATMENT

    After gowning up, I was surprised to find men in the patient waiting area. :(

    It was so cold... I was always freezing.

    Holding the "position" was very hard for me.  I was surprised.

    It is not rare for the machine to "go down."  That meant no tx or long delays.

    No treatment on holidays.  No problem?  Says who?

    Don't schedule a cruise the day after you "think" it will be over.  Stuff happens.

    The tattoos are miniscule and no problem.

    Somewhere along the line you will HAVE to stop wearing a bra.

    Burns and skin fissures can arise suddenly and heal almost as quickly.

    Radiation burns do not scar. :)

    My treated breast is NOT smaller now.

    Even if you think you feel good, you will feel better as time passes.

    Some days it took 20 minutes, some days it took an hour - on the table. Why?

    You're not supposed to have blood drawn from or BP taken on the arm on the op'd side. 

    Don't gain or lose weight - it could change your measurements.

    Radiated skin is very susceptible to sunburn.  Stay covered up. 

    My radiation field was much bigger than just my breast - underarm, ribs and upper chest. 

    Aquaphor heals skin splits but it is the gummiest stuff in the world - pure vasoline I think.

    If you use Aloe, get the clear kind.  The green has color added. 

    The "Crystal" deodorant did me no good at all.

    If you have IMRT where you hold your breath.. you hold your breath longer than in the simulation.

    Almost two months post-RADS and I still don't have to shave that underarm! 

    I actually got used to it and it wasn't so bad.

    Good luck.  You'll do great.

    Pam 

  • magob
    magob Member Posts: 242

    Surgery went well for port yesterday.  SORE today.  Does that go away?  Were any of you able to sleep on your port side after a while?  First round of T/C starts Tuesday.  JBurke and OneL - hope you recover quickly from your surgeries.  Be sure to listen to your docs and move the lymph node arm like they tell you.  It is crummy for a while, but it DOES get better.  Are either of you going to do the oncotype test?  (Your onc would tell you if they think it's a good idea.) 

    To all of the ladies - treat yourselves like princesses.  XO, Mary

       

  • pj12
    pj12 Member Posts: 18,108

    Hi One-L,

    You sound so good!  Glad things went smoothly and you are home recuperating.  There's no place like home when you don't feel well.  Or any other time too.

    My surgeon told me to take the prescribed pain med even if I thought I did not need it and I did for a couple days.  BUT I really started feeling better when I stopped the drug as it made me very unsteady.  At first I thought it was from the surgery but soon realized it was the darvocet stuff.  I'm sure, though, that it got me through a day or two when I might otherwise have had pain.

    Take it really easy this weekend.  We know you will be back at work right away :) so rest up while you have the chance.

    Pam 

  • pj12
    pj12 Member Posts: 18,108

    New Study about lymphedema and exercise:

    http://www.msnbc.msn.com/id/32390238/ns/health-cancer/ 

    I guess you will have to copy and paste to open it.

    Pam 

  • jburke1
    jburke1 Member Posts: 258

    Pam, thank you for all of the tips, I am sure they will come in handy to remember, if I can remember them! I will have to write them down. I am having a lot of trouble with my node removal site, it is really umcomfortable and swollen, even after the surgeon drained it on Thursday. I want to try to go all day today with out it being covered, my skin is getting very irritated from the tape. He will be draining it again on Monday when I am in surgery again.

    Mary, yes my onc is doing the oncotype test, I will know the results of that on the 25th. I hate having to wait so long! I am facing a big unknown right now, not knowing if I will have chemo or not, and it is driving me crazy. I try not to think about it too much, but all I have to do is move my left arm or look at my incision site and I am reminded. But aren't we all?

    Hugs and love

    Jen

  • one-L
    one-L Member Posts: 653

    Good evening ladies:

    I am still feeling good and haven't  even taken a nap.  I have just moved around the house, doing nothing in particular.

    jbourke1, they did not tell us if the nodes were clear.  I will find out Tuesday when I get the drain removed.  I think I will have to wait another week for the other test results.

    pj, I have been taking my meds as prescribed and probably will do that through tomorrow and see how I feel on Monday. 

    Thanks to everyone for being here for me.  I know you were all there yesterday and will continue to be there for me as I go through everything else that I have to go through.

  • pj12
    pj12 Member Posts: 18,108
    THIS SAYS IT ALL: Time passes. 
    Life happens. 
    Distance separates. 
    Children grow up. 

    Jobs come and go.. 
    Love waxes and wanes. 
    Men don't do what they're supposed to do. 

    Hearts break.. 
    Parents die. 
    Colleagues forget favors. 
    Careers end. 

    BUT......... 
    Sisters are there, 
    No matter how much time and how 
    Many miles are between you. 
    A girl friend is never farther away 
    Than needing her can reach. 

    When you have to walk that lonesome valley and you 
    Have to walk it by yourself, the women in your life 
    Will be on the valley's rim, cheering you on, 
    Praying for you, pulling for you, intervening on 
    Your behalf, and waiting with open arms at the 
    Valley's' end.
  • Beach
    Beach Member Posts: 16

    Jen--Pam did a great job of summing up the radiation process.....well done!  My experience so far has been quite similar.  Redness didn't appear until after the 12th tx but it's not so bad......using Lubriderm Original (unscented) and so far so good.  My medical team recommended water-based lotions like Lubriderm or Glaxal-base cream.  They said that aloe helps with the burning sensation but if the skin gets dry, to stop using it as it will dry it out further.  The redness is a square that covers my entire breast plus under my arm.  My unit generally runs on time and set-up/treatment time is maybe 15 min total.  Schedules do change with very little notice and equipment does get serviced......I have a "holiday" this Wed. because of servicing.  Fatigue hits me in the late aft/evening but I'm quite functional in the morning.  Hope this helps.......good luck with surgery tomorrow and treatment plan on the 25th......my thoughts and prayers are with you.

    One-L--Nice to hear from you so soon......wow, you sound great!!  Only words of advice I can offer........accept the help when it's offered, take your pain meds as prescribed, do those exercises once the drain is removed and let your body rest!!  Good luck with the path report on Tues......try to bring someone with you to that appt. and ask your doctor for a copy of the report.......it's hard to take everything in and you will have questions after the fact.  I have referred to my path report numerous times and having it has allowed me to do my own research in order to organize my questions for upcoming appts.  Not all medical professionals are terribly forthcoming, so it is important to be your own advocate during treatment.  All the best to you!!

    MAGOB--I was surprised how much pain I had after the port was placed inside of me.  Even more shocking to me is the fact that the only time I threw up was after this procedure.  Chemo didn't ever make me physically sick, but the sedative and pain meds given during this procedure did Undecided  The good news is that it does subside after a few weeks and yes, you will be able to sleep on that side once it does.  Now I forget mine is there most of the time and it makes the chemo and Herceptin infusions so much easier!  Good luck with your first tx on Tues......I'll be thinking of you.

    All the best to all ladies on this thread......no matter where everyone is in tx, we can get through this together!!

    Hugs,

    Sandy

  • SueInOhio
    SueInOhio Member Posts: 10

    Greetings Ladies...I know, I know...I have been AWOL....again!

    Pam: Wow! This group has grown! What a great bunch of women! I remember telling someone when I was first Dx.."I didn't ask to belong to this club. I don't want to belong to this club!" Well, here we are. And how amazing it is to have someone tell you what to expect!  By the way, I remember asking you a few weeks ago about what to expect with upcoming rads. Your suggestions were great then...and even better listed as you did above. You are so so supportive.

    Sheila: Love that book title! Save a copy for me!

    Yasmin: We joined this group about the same time. I'm so sorry to hear that you have to do Chemo. We will be here with you. You are at the James...I am at Riverside.

    One-L:So glad everything went well! You take it easy and do things only if you feel up to it! Getting that pesky drain out is a day brightener! Do the exercises. My favorite was the spider walk up a wall (using your fingers). The stretching felt good.

    BoyMom:Glad you are here. This breast cancer stuff does rock the foundation. My Dx and lumpectomy were around the 1st of July. I just now have the oommph to write those thank-you notes. Take your time. It gets easier.

    JBurke:I had a lumpectomy. SNB showed micro spot in one node thus necessitating the underarm axillary dissection. That underarm thing drove me nuts. It felt like I had a paperback book under my arm. And those lovely shooting pains as the nerves are healing....well insert scream here!Surprised...my med onc gave me neurontin (it is an epilepsy drug that they have been using for our problem.) It really helped. So, I am 6 weeks out from surgery. That paperback book feeling stopped around week 5.

    Beach: Absolutely great to mention that one should ask for a copy of the path report.I asked for that and then thought , while I am asking I might as well ask for a copy of the Ultrasound guided biopsy, the MRI, the CT scan and the bone scan!  You are entitled to copies of all reports. But you have to ask for them! (It was interesting to read the bone scan. All my other parts are in real good shape!) And those reports give you the info such as type, stage, grade, nodes involved and ER/PR/HER2 results. Your doctor will tell you...but you have so much info being thrown at you that you will not remember.

    You all were talking about post op and going back to work. I hate to use this line...but...everybody is different and everybody has different needs. I had a lumpectomy on Thursday, the drain removed on Monday..and I was back to my office on Wednesday. There are things that only I can do...and the longer I stayed at home the be-hinder I would get...and I really did not feel that bad. My wonderful husband drove me to work. I have a desk job, so I was able to do my thing and leave... I am not a superwoman by any means..no, not me!...For whatever reason, it was better for me to go to the office for awhile rather than staying at home thinking about what had happened to me!

    So, my update...after the simulation and the 1st dry run that they do, I started rad treatments on Fri, Aug 7. On Tues I asked the rad therapist if one's breast could be pink on the second treatment. She said no way. I was pink and warm to the touch. She said it is not the radiation. She was right. Doc said I had an inflammation/infection in the lumpectomy cavity. (Pam, I think you mentioned that this happened to you?) So, I am on 10 days of Keflex. Rad treatments do not stop. I have now had 6/33. I felt the best this weekend since the surgery. I have some spunk back!

    You ladies are the best! I am so glad that you are here!

    Hugs,    Sue

  • elimar
    elimar Member Posts: 5,885

    Hello! 

    My tagline tells the basics.  I am post lumpectomy and pre-everything else right now.  I tried to do the Contura balloon catheter radiation, but it didn't work out.  Starting the 6 1/2 wk. radiation in about a week.  Not excited by that, but then who is?   I'm finding it hard to stay positive.  My mom, whom I am caring for, has Stage IV lung cancer.  That was bad enough, but then I got my own diagnosis on top of it.)  I'm tired of cancer already, it's exhausting.

  • pj12
    pj12 Member Posts: 18,108

    Good Grief Elimar!!!  I hope we can be of some comfort to you while you have "so much on your plate."  You can rail and wail here and we all understand!

    You have got to be under so much stress.  Why did your own diagnosis have to come along when so much was being asked of you in caring for your mother?  Do you - don't you - think stress makes us vulnerable to illness?  I know, the year preceding my diagnosis in 2-09 was terrible; an unexpected family member's death and a horrible family squabble had me crying myself to sleep many nights. Isn't it said that we all have wayward cancer cells roaming our bodies and our immune systems are always fighting them off?  Maybe stress weakens our immunity?  Or maybe it is "written," or maybe it is all coincidental.   But it is awful!

    Do you have other family to help you?  So sorry your mom cannot be a comfort to you when she is in such a state of her own.  We all have our own "story" to share and it is hard for people who are not going through it to understand.  We are here for you!!! 

    (Hugs) Pam 

  • elimar
    elimar Member Posts: 5,885

    Personally, I do think stress could be a factor, as far as hindering the immune stytem function; but as we get older a lot of things make our immune system decline.  I don't think I can atribute my tumor to any recent stress because I have read that many cancers are in existence for some years before they are palpable or even show up on the mammo screenings.  My own tumor had been missed on my 2008 mammo.  I found it shortly after getting the "all clear" from my screening that year.  Partly because of that false sense of security, and also because my mom was hospitalized for 3 mos. this past winter and I was wrapped up in that, I didn't rush right to a doctor upon discovering the lump.  I may have been stupid to watch and wait for some months, but since my cancer turned out to be slow growing anyway, I don't think the waiting made much of a difference in my case.  Of course I don't want to promote a "wait and see" attitude.  I should have gotten to a doctor right when I noticed the lump (about a month after my mammogram last year!)

    The rest of the family is of the male persuasion.  They only partially "get it," so my home support could be better.  I KNOW the women posting here all understand.  Thanks!

  • dee1961
    dee1961 Member Posts: 902

    Hi ladies,

    I was diagnosed after lumpectomy in January 09. Had bilateral mastectomies in March 09, immediate reconstruction with tissue expanders. Node dissection. Now mild lyphedema. No chemo, no rads, starting Tamox soon I think, been putting it off because of the se's I KNOW I will have. LOL

    Anyhow, It has been a crazy year and one I will be glad to see over with. Good luck to you all!

    DCIS 1.8cm w/IDC 1mm microinvasion ER+ER-HER2+++ 18 nodes clean.

    Dee~

  • Mistie151
    Mistie151 Member Posts: 3

    Hello everyone..

    I am just joining this group which like I am sure everyone on here thought that this wouldn't/couldn't  happen to me.  But it has and I will not let cancer win.  My journey started in May when I went in for my yearly checkup and then over to the Breast Center for my yearly mammorgram.  I got a call a couple days later that they would like to me come back in for a couple more views.  I didn't think anything of the call because the same thing had happened the year before and everything turned out to be fine.  That was not the case this time.  In June I went in for the extra pictures and they would take a couple and then go and talk to the Radiologist.  Come back and do a couple more and then the tech came in and said they could not get a clear view and wanted to do an Ultra sound...that is when they told me there was changes and that it would be a good idea to have a biopsy done. 

    On top of dealing with having to have the biopsy I was also scheduled to have a total knee replacement done.  I had the biopsy done on June 23rd and on June 26th I had the knee replacement surgery.  On Monday June 29th when I came home from the hospital was the day I found out I had cancer.  My PCP referred me to a surgeon and I had an appointment scheduled to see the surgeon on July 14th.  Prior to this appointment I had the breast MRI done and let me say that was hard since I had just had the staples removed from my knee a few days before and I was not able to put pressure on it but I managed to do it by the grace of God.  I met with my surgeon and was lucky enough to have the surgery a week later to remove the tumor.  She was very confident that she got it all and the margins are good.  I am so thankful it was small and caught very early. 

    I meet with my Oncologist/Radiolgist tomorrow August 17th for the first time and will setting up the radiation treatments.  Don't know how many yet or what else is in the picture down the road at this time.  I also have an appointment to meet with the Oncologist on August 27th.  

    The hardest part so far for me was the decision I made not to tell my son/daughter-in-law because at the time I found out I had breast cancer my daughter-in-law's mother was diagnosed with panceatic cancer and I just could not add to that stressful time for them as my son also suffers from MS.  Unfortunately his mother-in-law lost her battle and passed the end of July only 7 weeks after being diagnosed.  I decided that I would keep this from them because I am planning to be around for along time and may never have to tell them about this experience.

    I am so glad I found this website as I have been reading all weekend long and have learned so much about the treatments and drugs being used.  Plus I know the support of others going through the same thing and being able to ask questions is a plus during this journey.

    Thanks for the opportunity to tell my story...sorry it is so long.

    Fran

  • pj12
    pj12 Member Posts: 18,108

    Hi SUEINOHIO!

    You have been busy!  Yes, I too developed  an infection about a month after my lumpectomy.  I thought something was going on but could not get anyone's attention until I broke out in big red splotches.  I suspect it came from the wire placement prior to surgery... which was not in the right place anyway :(  but it all turned out okay.  

    So glad your radiation TX is not delayed by the infection.  I was absolutely manic to stay on schedule.  You are in a good window of time... not too many holidays to slow things down.  Thanksgiving and Christmas days off wreak havoc with the routine.

    You sound good and strong!  Don't push yourself too hard.  Naps are a good thing if you can work them in.  

     Keep us informed.

     Pam 

  • carolehalston
    carolehalston Member Posts: 8,124

    Fran, what a strong, positive person you are!  Knee replacement surgery is no picnic.  And then to be diagnosed with bc on the day you come home from the hospital!  Best of luck and good health from here on.

  • pj12
    pj12 Member Posts: 18,108

    Oh Fran,

    How strong and brave of you to keep your diagnosis a secret from your son and his family. Yes, it does sound like you will have good stats and will be cancer free.  But goodness, I hope you have others you can lean on during all of this.  I have always been a very private person but for whatever reason, decided to not keep my diagnosis a secret.  I have been amazed at the outpouring of support from people I did not really consider close to me.  It has really bolstered my spirits at times.  And cards in the mail!!! You'd think each one had a fifty dollar bill in it... just love getting them and they mean so much to me.

    Well, we are here for each other... and it is for sure that no one else is going to understand what you are going through like those of us in the same situation.  So sorry you are hare but glad you found us!

    Pam 

  • Mistie151
    Mistie151 Member Posts: 3

    Carole & Pam,

    Thank you for the kind words.  I know I haven't won the battle yet but I am a fighter and will definitely give it my all. 

    I have some very close friends and my sister who are very supportive and there when I need to talk.  I also work with a doctor who is a breast cancer survivor and I have been able to ask her anything and she looked at my pathology report and said the odds were in my favor. 

    I will continue to read and learn as much as I can from the great women who have been through what I am just starting to undertake.

    Fran

  • lottie
    lottie Member Posts: 160

    Hi All, well I wrote out my whole story about an hour ago and must have never clicked "submit" so here I go again! Blame this on "cancer brain" ... I've heard people talk about "chemo brain," I haven't had chemo (yet), but since my diagnosis, I've been a space shot.

    Back in May I noticed a sharp, shooting pain in my right breast. I'm 51. I was on vacation in Northern California, driving down the Pacific Coast Highway when this pain started. Once I hit the hotel room I looked at my breast and noticed my nipple was flat and slightly inverted. I told my SO that "one headlight was out." Coincidentally I was scheduled for my annual mammogram on June 7. The morning of the mammogram I found a mass behind my right nipple. I'd been afraid to look before, I think. The tech at the hospital couldn't feel the mass, and since it was a Saturday, I couldn't get authorization for a diagnostic mammogram so they took the standard films and I saw my PCP 3 days later. My PCP could feel the mass and also had the mammogram results. Despite the fact that we could feel the mass and my nipple was acting funny, the mammogram was "normal." My PCP set up a breast MRI and booked me an appointment with a surgeon. The surgeon, an awesome, sharp, smart and compassionate woman reviewed the MRI results and got me in for an ultrasound guided biopsy that same afternoon. One week later I learned I had IDC. 

    I consider myself very fortunate. The surgeon set up appointments for me with an oncologist of my choice, a radiation oncologist and a plastic surgeon and also arranged to review my case during their bi-weekly "tumor board" meeting. So, I saw all the specialists to review all of the options and ended up having a mastectomy on 7/27, three weeks ago.

    Recovery from surgery has been good I think. I do have a small area of infection in my incision but it is healing quickly now and after 3 weeks, the exhaustion from surgery is finally lifting. I'm doing physical therapy 2x per week and trying to treat myself well. I'm very very lucky, I know that for sure ... I have accumulated more than enought sick time with my employer to be able to stay out of work months if I need to. Normally I have a long commute on public transportation ... it makes for a 12 hour day, every day. I'm grateful to have this time off and know that many women aren't as lucky as I am.

    My lymph nodes were clear but the oncologist is recommending 4 courses of Cytoxan and Taxotere followed by Tamoxifen. We agreed to wait for the results of the oncotype dx before I make my final decision. From what the oncologist says, it seems that the tumor in my breast was larger than he'd expected (should he even have been speculating in the 1st place?) and with the size of the tumor and my age (51 = young apparently!)l, he feels chemo would be worthwhile. He even said he'd take it if he were me. 

    So, I'll have the oncotype results on 8/26 hopefully and I'll take it from there. In the meantime, I'm reading these forums, trying to rest and heal and keep a postive outlook. What an incredible trip this has been! I haven't found myself saying "why me?" but I am so stunned that this has happened. 

    On the positive side, I've been reminded about how strong and generous people can be, especially other women with BC. My best wishes to everyone and the best of health and well-being to all of you

    Lottie

  • one-L
    one-L Member Posts: 653

    Lottie and Fran what stories.  Be strong both of you.

    I am still feeling great from my surgery, however, my breast incision is opening up.  I called the Doctor and he didn't seem concerned about it.  I see him tomorrow to remove my drain and he said to just keep it covered.  It was draining really bad today, not sore, no inflammation, no fever, just draining.  He said that was normal and he would check it out tomorrow.  We did put some butterflys on it to keep it from opening any more, I don't know what he will say about that, but it had opened about 2 inches and about 1 inch wide.  When I talked to him it was only about 1 1/2 inches and maybe 1/2 inch wide.

    Also, I have been reading up on lymphedema and what to know how many of you have suffered from this and if there is anything special I can do to help prevent it.  So far I have not noticed any numbness in my arm.  I know it has only been since Friday, but I don't feel like I have a book under my arm.  I want to do all the right things to help prevent any more problems.

  • mrsphilly
    mrsphilly Member Posts: 5

    I went back to work today for meetings as school begins for the kids on Wednesday.  Then got a call that I needed to go to the doctor at 1:45, now that is an hour and a half drive from where I work and I was concerned that I got a call to go.  Turned out the surgeon had made an appointment with a physical therapist who specializes in mastectomy and other cancer patients.  She had an opening today because of a cancellation and didn't have anything else for more than 2 weeks.  It was a good experience for me as she showed me how to massage to keep the fluid from the swelling draining.   I am sore this evening but not as swollen. Have had to be drained twice and massage sure feels better and is much more comfortable and I can now do it at home.

     I am learning that if you don't ask questions you can't learn much.  No one told me about deodorant, except on one of the boards to avoid it because of irritation.  Now I know more about it because of this board.  Corn starch is helpful to keep dry but sure doesn't keep the odor down when it is 95 degrees with 90% humidity.

     I am still very sore and having trouble waking up everytime I move so try to sleep as much as I can whenever I can.  But that will end this week, just have to nap when I get home.  

    Still don't know about onc or rads, won't until 9/2 which is 6 weeks after surgery.

     mrsphilly.

     

  • binney4
    binney4 Member Posts: 1,466

    Hello, One-L and all,

    I'm from the Class of 2001 (yes, you really can look forward to being 8 years out some day!) and just wanted to pop in here to encourage you to learn all you can about the simple life-style changes that can help you reduce your risk of lymphedema. There's information about risk reduction on these two sites:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    http://www.lymphnet.org  (See their Position Papers on Risk Reduction, Exercise, and Air Travel)

    Hope that helps, and that the Class of 2009 stays swell-free always! Please feel welcome to drop by the "Lymphedema After Surgery Board" here with any questions or concerns, as there are lots of Sisters there happy to help.

    Be well!
    Binney

  • lottie
    lottie Member Posts: 160

    one-L - I am doing physical therapy and the therapist specializes in lymphedema. One thing you can do is get a medic alert bracelet to make sure that you completely avoid blood draws and blood pressure cuffs on the side of your surgery. You should avoid sunburn, other burns, and anything that may result in an infection. Use gloves when you garden and if you get professional manicures, bring your own tools. Dr. Susan Love says we need not go overboard with these precautions & to use common sense. How many nodes were removed? My surgeon only took 2 and I understand that the fewer nodes that are removed the smaller the risk. Also, the physical therapist told me to be fitted for a compression sleeve to wear when I fly, especially if it is a long flight.

    mrsphilly: I'd be interested in learning what massaging does to reduce swelling. After 3 weeks I still have a pouch of swelling under my arm. It's painful and ugly. It also covers up the area of the incision that is infected. I think that's why I developed the infection in the 1st place. 

    Best to all

    Lottie

  • pj12
    pj12 Member Posts: 18,108

    Hi One-L,

    No lymphedema so far.  I am flying to CA tomorrow so a little apprehensive about that.  Anyone know why flying causes problems?

    There was an interesting study about LE and exercise.  You'll have to copy and paste the address.

    http://www.msnbc.msn.com/id/32390238/ns/health-cancer/ 

    Pam 

  • Rose_wood
    Rose_wood Member Posts: 5

    Just finished treatment -- 34 sessions.   I was just told not to use a deodorant or to shave that side.  When I questioned the deodorant, I was given a very vague answer about the aluminum, talc, etc..  When it's hot and humid, you need more than just washing with DOVE.  Fortunately, I have a daughter who told me about Toms of Maine (even the fragranced ones are all natural).  So now I tell everyone (even someone who was a kidney recipient and needed something without aluminum).  This site is the greatest for sisters helping sisters.