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  • Edsluv
    Edsluv Member Posts: 8
    edited May 2010

    Thanks for the prompt response!!!! Left a message for the breast cancer coord. where I will receive treatment, so I hope to move forward with a decision soon. Chemo will not begin till after I heal from my surgery (the reason for my "mind-change"...less recovery with lumpectomy/ sooner surg date available, which would "have" led to quicker chemo start date) All of which does not seem to be falling together ; ( ....As we all know, "TIME" is not our best companion while we are on this "journey"...Just leaves more time to "think."

    I can not express enough, how blessed I am to have the most amazing family and friends, but it is all my "sisters" here that truly will get me through this!!!!! Thank you from the bottom of my "happy silly heart."

    Thinking of In_Cognito & Cant wait to hear from You!!! We are so close (City's) , so I definitely want to be here for you <3

    PS  thanks for the "PM" inviteWink

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2010

    Newbies, sorry you are here, but i"m glad you found this place . Over time you will gain great solace here that can't be gotten else where. I wrote a topic sometime ago regarding getting prepared. I just bumped it up. It's about practical stuff to make handling all the paper work easier, going for consultations, medical record keeping, grant applications for money, avoiding pitfalls like depression etc.  I hope you find something there that will help. Please add to it so we can keep it going.

  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    Calypsogirl - thanks for the info and reminding me to find something for my son.  He's 8, and I can tell that he thinks about it and gets a little sad... when he looks at my port... or is reminded that he has to kiss mommy on the cheek and not the lips anymore!  I think he would benefit from a group this summer - need to look into it - I'll let you guys know how it goes!! 

    Edsluv - I don't remember your BC stats... pathology so far.  And, waiting a couple/few more weeks for what you want is just fine.  Take your time - research - talk to us - think it over - talk to family and then do what will give you the greatest peace of mind!!!   Are you doing chemo or just rads (not "just" rads, but I see that you met with Rad Onc, but not Med Onc).  :)   And, YES!!!! on your BRCA results!!  I am still awaiting mine - just got the blood in the mail on Monday night... so maybe another week or so. 

    Tory - I'm thinking he's just REALLY a jerk!  Not my problem... his problem.  Just don't know how he goes to Church and is able to 'act' Christian but not "live" like a Christian.  The act of going to church is not what will get one in the pearly gates... apparently he does NOT know this little secret.  hehe.

    Debbie - Hey!  I ran into the 5 post thing... and was like "what???" so thanks for mentioning that.  I think mine allowed unlimited posts sometime around 25 or 30 posts.  I guess they don't want someone coming on the site and spamming it! 

    ((((HUGS)))) all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Going to work - see you tonight!

    PS - where is the TMI page.. I haven't found it??!!!!! 

  • KorynH
    KorynH Member Posts: 301
    edited May 2010

    If I could have had a lumpectomy I would have. I have now lived without a breast for 18 months. I had no idea the long term reprecussions of that surgery and am sorry it had to be that way for me. I had two tumors, 8 inches apart from each other. There was just no saving my breast.  I guess with any decision I have come to realize that I have to make it based on what I would regret more in the future. It is the 'lesser of two evils'. Sometimes the choices we have aren't good ones no matter how you go. In the end, you have to ask yourself, 'will I regret this decision later' and which decision allows me to change my mind later. For myself, I opted to not remove my healthy breast becuase yes, I would possibily regret that later and yes, I could change my mind later.  I wanted to leave my options open in the future and my surgeon assured me that breast would be followed closely every 6 months with mri and mammography.  He also reminded me I could have it removed later if I wanted but once it was gone it was gone for good.  All I know is that living with an expanded chest muscle (from the single mastectomy) that has screwed up my back and caused nerve damage, and having a numb "breast" on my chest which I hate and can't feel and makes me look like a freak, well, I miss her every day. What can I say? There is no turning back after mastectomy, unfortunately, and what you are left with most definitely is not a breast as you once knew it. Maybe I am still grieving but I wish somebody would have been up front and honest with me about this procedure before I had to go through it so at least i would have known what to expect.  Sometimes I think that plastic surgeons think they are doing you a favor by doing reconstruction for you and that you'll be 'good as new' in the end and that simply is not true. Yes, to everyone else it looks like a breast and makes me look natural with clothes on but I am the one who has to get in bed every night with my husband and get out of the shower every day and remember what I went through and I am forever changed.  I am not bitter. I just want women who have a choice to realize what they are getting into beforehand so there are not surprises in the end.  My plastic surgoen told me the feeling will never ever return because in a mastectomy all nerves are severed between the breast tissue and the skin. I guess I just never realized how permanent that would really feel after a year now that my health has returned and my hair has grown back. I just wish my breast would grow back too.

  • tory
    tory Member Posts: 149
    edited May 2010

    Koryn - It does sound like you're still in mourning. Hugs to you. It's very sad to me also that we can't go back. I miss my breast too, but I also hate having the remaining "real" breast and am opting for a prophylactic mx on that one. So...knowing now what you didn't know then, if you had it to do over again and still had no choice on the 1st mx, would you change anything? Would you have a 2nd mx? Would you not choose reconstruction? I have insurance issues that are forcing some decisions that I'm not entirely sure I'm ready to make, so I'm just curious. I'm set on the 2nd mx, but I'm not so sure about recon.

    There's no way around it; BC sucks and I suspect that even for those who have lumpectomies what's left is different. I feel like I can't trust mine anymore - I felt fine and look what was going on inside.

    Big sigh.

  • KorynH
    KorynH Member Posts: 301
    edited May 2010

    Tory- No, I don't think I would have changed anything as far as the surgery. I know. It sounds like I am just whining. Maybe I am. I'm glad I do still have the one breast and nipple. It is a huge loss for me sexually but at least I have the one. I guess I would have researched reconstruction better and tried to go with something that didn't require tissue expander. Stretching the chest muscle really messed up my back. I had a lumpectomy first before we knew about the 2nd cancer site....so I can say that at least they (women with lumpectomies) have their nipples and sexual stimulus. The missing tissue filled in. It wasn't numb. I am very happy that at least I have what "looks" like a shape in my bra cup. I have talked to lots of women who hate the way no recon makes their clothes not fit right and certain style and swim suits out of the quesiton. Their posture suffers too.

    I wish you all the best in your decisions. You are right, it does suck. Insurance should have nothing to do with it and that is sad that women can't get the care they would like because of it.

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited May 2010

    Koryn~ (((((((((hugs))))))))))) I know how you feel, I have even heard, hey your lucky at least you have 1 breast WTF!!! it is so hard trying to find clothes to wear, im thinking summer is almost here and i cant wear a friggin bathing suit, I went back and forth on wondering if I should of just said I want a lumpectomy, but I had 3 in differnt also onco said I needed to have the MX it has been year out for me since surgery, but some days Im thankful they found it and I would do anything to live, Im still thinking about recon there are pros and cons, but I can tell you my daugher had the DIEP tram flap I think thats what it is called, but her breast look so great, I remember when I first saw them I was scared to look, thougth it would be horrible, I actually jumped up and down and clapped, then cryed for her, Yes, there are some horror stories on here about reconstruction, and there are great stories of hope here too, and even though my DD had a great outcome, Im still worried to have one done, so I understand. I have actually been getting feeling back in my Mx side I heard it can come back, not completely, and can take even a few years, so i hope that you will eventually get some feeling back. I wish i could give you a big hug and make you feel better- Sending love and hugs your way

    angel hugs,

    debbie

  • in_cognito
    in_cognito Member Posts: 429
    edited May 2010

    Hi Ladies!  Edsluv - so nice to see you posting again!

    I had my lumpectomy yesterday and it went very well.  I feel so much better knowing that the bulk of the cancer is out of me now!  The surgery itself was a breeze - it was the anticipation and the days leading up to the surgery that were making me a nervous wreck!  They wheeled me into the OR at noon and at 1 pm they were waking me up in the recovery room.  I've had no pain, just tenderness - and the surgeon said the sentinel nodes appeared clear to him - the final pathology will be back on 6/4.  Sizewise, I'm hoping the surgeon got clear margins - the tumor was measuring about 1.5 on the mammo and u/s but up to 3.2 cm on the MRI - so a difference. 

    I'm glad to have this part behind me.  Here's to the next steps!  I have a meeting with the BS on 6/4 to go over my path report and discuss next steps.  So here's to more waiting!

  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    In-cog.  I'm so glad it went well.  There are times that MRI overestimates tumor size, so hopefully the actual pathology will be smaller than what it showed.  That's great that the nodes looked clear - I'll be praying for 0 nodes for you!!!!!  Praying hard!  I'll be on vacation 6/4, but will be thinking of you when you go for your apponitment and trying to check in if I can! 

    Koryn - thanks for sharing your story.  It's really hard to know what to do, and seeing all sides is so helpful in making those decisions.  I'll be having single mx, and maybe the other - we'll see what my BRCA results are, and I guess I need to look into Oncotype/score.  I haven't had that.  What tests do they do for that?

    Debbie - I will be praying for you as you think about the choices you still have to make!  It is such a tough road - so many answers... right, wrong... answers we don't know!  I'm still there.  Getting through chemo, then more deicsions to make!  Such a long road... can't wait until I find the end!  :) 

    ((HUGS)) everyone!!!!

  • tory
    tory Member Posts: 149
    edited May 2010

    Good news, in_cognito! I'm really happy for you!

    And Koryn, you're not whining, you're just telling it like it is. I appreciate your honesty. The sexual thing is a loss for me too and it's impossible to have sex without thinking about it, but since I can't change it I just try to deal with it as I can.

  • ishobie
    ishobie Member Posts: 96
    edited May 2010

    amyls-what great advice you give, i have done most of that already before my chemo starts, the wig, the relaxation tapes, the juicing, alternative supplements. Just still so nervous about the chemo n hair loss and SE......

    you have a great attitude.

  • hopeful34
    hopeful34 Member Posts: 1,569
    edited June 2010
    I haven't been on this thread for a while, but I have a few questions.  I just had BMX w. immed recon.  TE's on May 21st.  I just got my last drains out today and up until today had no real pain...of course that's with me still taking pain meds.  Anyway, my first question is, Is there anything I can do about the swelling after drain removal.  I am soooo swollen and uncomfortable.  Also, since I see someone brought it up on here, How long after surgery do most people feel well enough to attempt sex?  I have no idea how that's gonna work.  I mean it might, but it seems like it would have to be pretty uneventful Laughing as I can barely move when laying down.  Anyway, thanks everyone.  Take Care,  Allison
  • tory
    tory Member Posts: 149
    edited June 2010

    Allison, You should see what others say, but I think if you're having awful swelling, you need to talk to your doctor. I had minimal swelling after my drain came out. My doc wouldn't take it out until he was sure it was ready because he said if there was a lot of fluid retention after the drain came out they'd have to draw it off with a needle. I'm not telling you that to scare you, but it doesn't seem that you should be that uncomfortable. Have you tried icing? I did that with my armpit for a while (usually at the end of the day), and it really helped. I think it was a combination of swelling and a highly sensitive area that was tired of clothing.

    As for sex, well, it seems to me that there's not a lot of talk about that here. I don't remember how long it was before I had sex, but I don't think it was very long after I got my drain out (I'm a uni, no TEs). It was not the most comfortable thing ever, but it went okay. You're right about the uneventful part - I didn't feel like I could move much, so hubby did all the work. Also, it was very emotional for me (and still can be) as my breasts were a big part of sex pre-mx. But it had to be done and you figure things out as you go. It gets easier. Good luck!

  • hopeful34
    hopeful34 Member Posts: 1,569
    edited June 2010

    Thanks Tory.  I just think for the most part I have a pretty high pain tolerance, and this drain mess is miserable.  I feel worse today than the day I came home from surgery.  I go to my BS for the first time since surgery on Monday, so I guess I will see how it looks then.  I was afraid to ice it, but it's worth a try.  I know I can't take any NSAIDS (Aleve, Advil, etc.) to reduce swelling bc they will interfere with the pain meds.  I don't know whether to wear a bra or not either.  I thought maybe if I went back to my post-surgical compression bra that might help, but I am so swollen it barely fits without really putting too much pressure on me.  Maybe, I will wake up tomorrow and everything will have calmed down a little.  As far as the sex thing goes, I too had a pretty healthy sexual relationship with my husband right up until a couple days before surgery.  I just hope it's not months.  I mean I can handle it, and he seems okay with it, but as if I am not already insecure enough having no breasts now, I hate that we can't even have sex for who knows how long.  Sorry for whining...I don't always complain this much.  Up until this swelling today, I thought this was much easier than I had anticipated.  Anyway, thanks again.  Allison

  • tory
    tory Member Posts: 149
    edited June 2010

    Allison, this is the place that you CAN whine if you need to!

    It seems like I felt more swollen when I tried to wear anything snug, but I didn't have TEs, so my instructions were probably different. I had a tube-top compression thing, but the doc said it could come off the same day and after that I either wore the loose post-op camis I had or once the incision was better I wore close-fitting regular camis because they didn't brush against my skin as much.

    And for at least the first time if not the first couple I wore something on top during sex - didn't want to be reminded of what was there, not to mention it didn't feel good to be touched. And it was better in the dark too.

    Hope you're feeling better today!

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