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Lumpectomy Lounge....let's talk!

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Comments

  • cakes
    cakes Member Posts: 89

    As a former lurker I felt compelled to thank TeamKim and canuck46 for their sage words. Posts like theirs have kept me moving forward and feeling so grateful I am not alone in this journey (not that I would wish this on any of you). Be patient but don't be afraid to avocate for yourself. And remember, it you don't take care of yourself you are no good to those around you. 

  • summergal
    summergal Member Posts: 65

    Thanks L2grl and TeamKim - I do understand that in the grand scheme of things, my cancer doesn't take precedence over everything else, that my diagnosis isn't urgent and grave, and that waiting is just part of the process.  I think what I didn't adequately explain is my feeling of "who is 'responsible' for me now (in the medical community)?"  I had a whole team at my local hospital...but then I decided to have my surgery at a different hospital, a cancer center, and the two don't communicate.  That's why I feel in limbo.  It's not the waiting, but the uncertainty that someone is actually proceeding with my case without my having to manage the whole thing. That "team?"  Haven't heard from them since the last time I saw them in July.  I've heard other women say that their GYN manages a lot of their ongoing tests and care.  I haven't heard from my GYN or my PCP at all.  I have two different MOs at two different hospitals.  I don't think they're communicating.  I have a nurse navigator who doesn't return calls for a week.  So, I feel a little at sea.  I don't feel like I'm on anyone's "to do" list. I just want to know how much of an advocate I should be for myself at this point and with my particular circumstance (of having two different hospitals and not knowing if either is working my case!). Thanks for the feedback!

  • Fephna
    Fephna Member Posts: 45

    I saw my gyn this morning. We had such a big hug. She told me I look great compared to the me back in June when diagnosed. She remembers the crying and depression I had. I told her back then every test felt like it took forever and the waiting for results I felt like I was loosing my mind. But here I am now full of knowledge of my cancer. Surgery done, in the right treatment designed for me. 2/28 rads now done. I remember when my bc said this wasn't an emergency and I wanted to choke her cause to me it was!! Lol but now I see how all the tests and the waiting have paid off to have the right surgery and treatment plan. My next decision oophorectomy or hysterectomy. An ooph is a 2 week recovery and hyst 6 weeks. The ooph is looking better.

    Hugs to all :)

  • summergal
    summergal Member Posts: 65

    Just a little food for thought - last week I wrote on this thread about "waiting for the other shoe to drop."  Well, last night I was reading a really great article in Rolling Stone about Michael J. Fox, the actor with Parkinson's. And he had this great revelation. He was always waiting for the other shoe to drop, when a therapist said to him, "Michael, you have Parkinson's disease.  The other shoe dropped a long time ago."  So, maybe instead of living in fear of the other shoe dropping, I can start living in gratitude that it already did...and it wasn't the end of the world. 

  • tori39
    tori39 Member Posts: 9

    Hi ladies, has anyone who had lumpectomy on one breast also had a sort of reconstruction/rearranging of the "good " breast to make them even, on the same day of the lumpectomy? Wondering if it is possible to get evensized breasts for one sided lumpectomy. Thanks!

  • cakes
    cakes Member Posts: 89

    Hi tori39, my surgeon told me it is possible to have fat from another area put into the void left by the lumpectomy. He didn't go into much detail at this point but said the option is available and would be done by a plastic surgeon. Until the swelling I have from radiation and a seroma subside, I don't know if I will need this. I try to get more info for you. 

  • aviva5675
    aviva5675 Member Posts: 836

    tori, I had that in my first surgery- lumpectomy (2 places) with oncoplasty- which is reconstruction by a plastic surgeon to rearrange everything and make it nice. I had a reduction on the other non involved side by him at the same time. So I came out of it with nice new perky matching ones... so yes its possible, and ask about it----I was just having lumpectomy and because I had mentioned to the BS I dont mind scars he didnt bring up the plastic surgery/matching/making nice stuff. I did at the last minute as we were leaving his office. So it was good.

    Then they were lopped off 10 days later after bad path report. But Im starting reconstruction process now.

  • tori39
    tori39 Member Posts: 9

    Thank you cakes and aviva! Your info is very helpful. Will ask surgeon next time I see him if this can be done for me if I choose lumpectomy. Now leaning towards lumpectomy because of this info, though not yet 100% sure I would choose lumpectomy, because I still have to reconcile myself with the radiation part of it. Thanks again.

  • Fephna
    Fephna Member Posts: 45

    Hi tori39 I had my lumpectomy with oncoplasty(reduction) on 8/1/13. I chose this surgery because bs explained she can get better margins when doing the lumpectomy, which was my main goal to get the cancer out. The ps she works with was wonderful. It is a longer recovery time then just a lumpectomy. I'm 8 weeks post surgery. I'm feeling good, pain is mostly gone except a zinger once in a while. My incisions are all closed and healing well. My bc breast is slightly larger for possible shrinkage with rads. Overall I am happy I chose this surgery. I started rads this week. I had to wait a little longer for the incisions to be completely closed. :)

  • TeamKim
    TeamKim Member Posts: 301

    Summergal -- great thoughts to move you to a different place.



    Regarding the seeming lack of communication on your "team"..... I was about to suggest a nurse navigator when I read that yours doesn't return phone calls. For heavens sake! Unless she is on vacation, that IS her job! Maybe get hold of someone you feel is compassionate -- even the receptionist or nurse at your surgeon or MO's office and explain your fears. Ask about who is coordinating your case. My BS told me after surgery that she would be coordinating for the next several years, so when I have questions! I usually call her nurse. Another angle might be to call the office where you first got your Dx -- in my case it was my local breast center -- or whoever originally referred you to your first treatment. My referring physician was my GYN, and he said he has been getting copies of every report.



    It is fair to ask -- " Hey, what is going on with me?" -- They may say you just need to wait, or you might sour them to check the chart where your test results are languishing because someone forgot to forward them. No harm in being a little persistent!

  • summergal
    summergal Member Posts: 65

    Thank you so much, TeamKim!  Calling my GYN is a great idea, as she was the first to notify me almost exactly a year ago when microcalcs were discovered in my routine mammogram.  I may also call the outpatient social services dept at my local hospital.  They have a few SWs dedicated to work with cancer patients and families.  Hope you have a great day!

  • ndgrrl
    ndgrrl Member Posts: 645

    Hi all,

    First day back at work and I managed to "over due it" wow for shooting pain and swelling and my arm  pit swelled way up again.  Ended up back on pain pills had to have hubby call work for me until I could wake and get the brain to function again and when I did wake up afternoon and call in my boss was a total "WITCH" she said - I said i feel rotten- she said "OHHH REALLY" then proceeded to tell me she was giving my job away for the week. I tried to explain to her that I was one week out from rads and the RO said that it would be a good 2 to 3 weeks before the side effects peaked. She didn't care she was replacing me for the week.. I really think that should have been my choice!!

    I found out from co-workers she was telling everyone I was "faking" it.. Faking sitting home not being paid? ummm?????

    I went to see the RO today, and he told me if my boss ever has cancer she is in for a ver rude awakening. So after my exam i found out what I was "faking" I seemed to have managed to tear out scar tissue, disrupt healing nerves , have an internal bleed i have to watch and may have to get expired at the surgeons office.. I also now have to go to the lympodemia clinic as I have intensive swelling in my arm pitt and its numb.

    I guess when I "FAKE" it .. I "FAKE" it well.

    My GP gave me a note to stay away from work for a month. My boss is SOOOO not gonna be happy about that. I really treuly do not want to give that to her. She is all about herself, and if I am not there that means she has to find someone else or actually work!! 

    Anyone else have any troubles after they started back at work? 

  • ndgrrl
    ndgrrl Member Posts: 645

    I forgot to mention the mentality of my boss.

    When I first told her I had been to the doctor and I had breast cancer she said " Oh did they give you a pill for that?"

    Then she wanted me to come back to work the day after I was fininished with internal radiation and I told her that was not possible i went back a week after. She told me well you are done with radition you are all better. I tried to explain to her there are side effects and that the doctor said they would peak in week 2 or three she wouldnt hear it- When you are done you are done. 

    I guess you can't fix Stupid!

  • aviva5675
    aviva5675 Member Posts: 836

    Sounds like harrassment to me. You are also covered under at least certain ADA laws- look in to it or consult someone?

  • Palameda
    Palameda Member Posts: 91

    Hey! My BS appointment yesterday was all good: my post-op infection has FINALLY cleared. I wouldn't wish my experience on anyone: 5 weeks of sick. I'm supposed to get my port in next week and start chemo immediately. I'm actually raring to go, the waiting has been horrible. I've gone through frustration and depression this summer, which are fully normal!



    I'm planning to get any cosmetic adjustments to the girls later, especially since rads may "alter" things. I just could not face additional surgery and discomfort on my "good" side while dealing with the whole BC issue. Those of you who do are braver than me!



    Two months out my scar is a little red and hard but I have no pain or discomfort anywhere. I plan to go to an event tonight and wear a sleeveless dress and look and feel fabulous. So, even when things don't go swimmingly, there is brightness in there.



    I had BOTH the oncotype and mammaprint tests, which my surgeon ordered. I think my grade 3 shoved me into the serious consideration of chemo category. I know most people don't get both tests, but my 28 oncotype was high borderline, so I wanted more info and my surgeon agreed. I have complete confidence that I'm making the right decision FOR ME. We've all got to make our decisions and feel good about them, and never look back.



    As for navigators, I found mine not very helpful. I just kept getting calls asking why I hadn't started rads. Something happened and there is now a new navigator, who is incredibly helpful and actually reads my file so has understood that I wasn't avoiding treatment. If your navigator isn't doing her job, complain. Easier said than done, I know, but gads we have to learn to be assertive when coping with this thing.



    The big lesson I've been learning is to tolerate ambiguity. Nothing in my life has felt settled all summer, when the truth is, most everything WAS just the same, and the rest I couldn't do anything about anyways!

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Lumpies!



    PatAlameda - yippee! Healing :D so glad you have turned the corner and are able to move on...5 weeks sick is a long time.

    Have a wonderful time out! Strut your glam & post a pic...you will look and feel beautiful :)

    Glad you mow have a nurse navigator who hears you and is on your team. Best Wishes on your port and we will be in your pocket in chemo land.

    Breathe, you got this...a day at a time! Sending positive calm confident thoughts and prayers.



    Ndgrrl - oh my, what a mess...glad your Dr stepped in and gave you additional tine to heal.

    Do you have FMLA? So difficult to deal with the stress of all this without the issues of work...:(

    Kudos for your dedication to you're job, but your health and healing must come first!



    Tori39 - hope your BS is able to answer all your questions as you determine your plan. Our decisions and choices are difficult...follow your gut you will know what us right for you! Sending you wisdom and discernment and confidence!



    Summergal - hope you were able to schedule appointment with a OSW and GYN. Finding a safe spot to ask and share and feel heard and confident in your care.



    TeamKaren - solid advice! Hey what's going on with me! We are are best advocate. Hope you are gathering lots of happy healing times. We will be in your pocket :D



    Cakes, fephna, aviva, Canuck ...shout outs for a good weekend !



    (((Hugs)))

    Cindy

  • cakes
    cakes Member Posts: 89

    RMlulu, you are a ray of sunshine! Thanks for the shout out. You have a have a good weekend as well. 

  • Palameda
    Palameda Member Posts: 91

    Thanks RMlulu for all your support!

  • Fephna
    Fephna Member Posts: 45

    Thank you RMlulu!!



    Wishing you everyone a nice weekend :)

  • TeamKim
    TeamKim Member Posts: 301

    RMlulu -- How are YOU doing? You are always so giving to all of us, but I want to hear an update sister!

  • rmlulu
    rmlulu Member Posts: 1,501

    Hey TeamKim & Lumpies



    Update...pins&needles! Had my 1st accupanture date for my 3rd boob. Yes, trunk LE ugh:(. BC team said to wait that swelling would go down and it did some but after 5 mos time for PT and accupanture. Faithfully wear compression sleeve for exercise...but the 3rd girl has got to go. Must say pain and heaviness is better...

    Fun is the moxibustion stick...whew the smell...but I'm game...so east meets west TCM with my tai chi&qi qong...:)

    HT has been a nonevent :) but I do walk everyday, lift weights, Zumba, tai chi, line dance, and am eagerly waiting on an all good report so I can hit the lake kayaking.

    Feel very fortunate to be 5 months post active treatment and looking forward to November for my first post-tx mammo!

    Girl wins...dragon slain! We can do this!



    (((Hugs))) Lumpies

    Cindy

  • canuck46
    canuck46 Member Posts: 62

    RMlulu - Can't wait to read your posts!  I love the way you express yourself and thank you for the giggles and uplifting words!  Hope your weekend is filled with love, laughter and peace.  Hugs, M

  • TeamKim
    TeamKim Member Posts: 301

    RMlulu -- kick that 3rd boob to the curb (can't masquerade as a real girl!). Glad the PT seems to help. Wishing you a good weekend with hugs and love -- your positive attitude is such an inspiration to all of us!

  • tori39
    tori39 Member Posts: 9

    Thanks fephna and mjlulu :)

  • bounce
    bounce Member Posts: 215

    ndgrrl - How are you doing?

    Every time I feel "better" I seem to overdo it a bit and then have a day of discomfort afterwards - but you seem to have done quite a phenomenal overdoing of it.  It sounds like you need a lot of R&R.

    Don't give your boss a second thought.  Don't do what you think other people think you should do. Do what you want to do.  Do what your health needs.

    It is really hard to go back to work and not overdo it.  People don't always realize what is easy or hard for you.  I know I can lift a fair amount of weight with my arm but a downward pushing movement that requires almost no strength makes me feel like someone is sticking me hard in the armpit!

    The best thing to do with stupid people's stupid comments is to let them flow over you and be gone.  Don't hang on to them so they can keep on hurting you.

    On hearing that I had cancer, a 74 year old relative of mine told me - "Well everyone has to come to terms with dying".  I assured him that at age 48 I had no intention of coming to terms with dying.

    A few people - bless them - seem to know just what and how to say and are so comforting but most people really don't understand all the physical and emotional crap that comes along with the cancer diagnosis.

    Its time for you to look after yourself - ask for help whenever you need it.  Allow yourself time to heal.  I thought I would be over my lumectomy in 3 weeks.  Ha. - My boobie has other ideas so I am just going to have to go along with the old girl and do things at her speed.

    Sending you warm fuzzies

    Bounce

  • 1311Chase
    1311Chase Member Posts: 1

    Thanks for the post had lumpectomy September 24 100% cotton t shirt under my bra really helped with itching

  • ndgrrl
    ndgrrl Member Posts: 645

    Hi,

    Bounce Thank you for the great words. I do need not not worry about my boss or work and just take the time my doctor has given me to heal. I guess people see I had surgery on Aug 19th and think oh she is healed. They just don't understand internal radiation but a balloon into where my cancer was and really stopped all the healing that had been taking place so I start over. They also dont realize radiation has side effects that are not done when treatment is done.

    WOW that elderly man sure was not very nice in saying we all come to terms with death! wow

    Two elderly ladies cornered me at work before I had surgery and aske me why I didnt just "cut it off" so I could avoid all the "shit" meaning radiation and chemo. I told them that is not what I wanted to do at this point so they basically told me I was going to kill myself doing things this way.  Then they said and my boss heard this that since I was not "cutting it off" but just having a chunk taken out. I would be back to work in 4 days and my idiot boss chose to believe that. PEOPLE!!  hmmmm..

    I just need to do what you say and let it go... Just let it go... I think that will be my new motto!! Small towns what can I say, everyone has their own opinions.  My boss is not happy to not see me for a month.. Oh well, I have my doctor backing me.

    I woke up this morning sleeping on the bad girl and have been having some shooting pains off and on since. It is so hard to stay off that side. Its the side I always slept on. My other side thigh is protesting being slept on all the time.

    Thank you all for being here to offer support- Its nice to know when you are not alone in all this. 

    :)

  • bounce
    bounce Member Posts: 215

    Hi there ndgrrl

    A lot of people are plain old ignorant.  Mastectomy doesn't mean not doing chemo or not doing radiation for some people.  Depending on diagnosis it isn't even a better chance of survival disease free for some people - so why go there if it isn't the best option?

    I have so much respect for the ladies on this website - from those doing lumpectomies (and double lumpectomies) -to those doing single mastectomies - to those doing double mastectomies - to those getting reconstruction - to those choosing to be flat chested sisters!  I have read your stories and laughed at your wonderful humor and cried at your pain.  You ladies have the right to say anything to me and I will listen because I know you understand the difficulty of making some of the choices we have to - but when an idiot asks why you didn't just get it cut off - that is either the time to say - excuse me I have to go - and just walk away - or ask the person to really think about what they are asking you!  Personally I believe you can't fix stupid and some people just don't and won't ever get it.

    Sometimes the more a person disrespects us or looks down on us - the more we want to prove to them that we are right, or ok.  It just doesn't work.  Abusive is abusive and no matter who is abusing you - walk away from them.

    Besides for the physical side of things there is also the emotional side. - It takes time to come to terms with the trauma our bodies have been through and are going through and it takes time to sort out the implications of having/had cancer and how to continue with life - what is the new normal for us?

    I know its easy to call one side "the bad side" but I decided early on that my poor boob had enough being prodded and poked and cut into - and needed a friend just as much as I did.  So I decided to be nice to my boob.  I know its sounds weird but I call her - "poor old girl" - or tell her - "wow sweetie - you have been through so much"!  "How are you doing today darling" is what I say as I gently poke myself to see if I have regained some feeling in the numb patch or to see if the hard area might finally be softening up.  I so want a "squishy" boob again.  :-)

    I am trying not to freak out by the changes in appearance to my breast which actually the surgeon never mentioned might happen even though I asked about possible changes before hand.   I don't want to think about my body or part of it as the enemy.

    I also tried sleeping on my usual sleeping side a few nights ago- only to be met with a rather unhappy arm and boob the next day!  I sleep on my side with a cushion next to my stomach for my upper boob to rest on.  It really helps.

    Sometimes its one step forward two steps back.  Try have patience with yourself.

    Get your internal voice saying lots of positive things.  Eat healthy, exercise gently, rest.  Talk about the things that are worrying you and bothering you with us.  We get it.  Ask yourself what you really want to do and try and do it - whatever makes you feel better.

    I had the oddest urge the other day to go out and buy a crystal - and I am not usually new age at all!  Hell - I might still do it.  I like being out in nature more now too.

    The first week and a half after surgery everyone was so nice to me I enjoyed it immensely - then boom - it was all back to normal - except I wasn't back to normal!  I missed all the attention (yes - I did and I don't mind saying so) and the help and it hurt to have to do so much work so soon - not a lot but enough!  I had a hard couple of days realising there was still a lot for me to deal with physically and emotionally.

    My breast nurse gave me a hug when I met her and although I am not a touchy feely person I really needed that hug and absolutely loved it.  It did me more good than Tylenol ever could.

    Sending you gentle hugs now.

    Bounce

  • summergal
    summergal Member Posts: 65

    Bounce - thank you.  I know you addressed your reply to ndgrrl, but I got so much out of reading your post and am sitting here with tears running down my face!  Just wanted to let you know you're reaching more than just one person with your encouraging words!

  • cakes
    cakes Member Posts: 89

    Ditto. Thanks Bounce. You made my day.

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