Calling all ladies in their 20's

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  • TaiB9
    TaiB9 Member Posts: 3
    edited October 2010
    Hi
    Really sorry to hear about your diagnosis. I also went through Neoadjuvant Chemo AC4 and T4. Because of my high Grade I couldn't even try to preserve my eggs. It's been 2 years. Now, at 29, I'm trying to see if I am fertile. I've been on Tam for 2 years. I will keep you posted. The Onc told me the same thing, she said I was young and early menopause was unlikely, which was true. 
     
    I got a radical mastectomy. When I was diagnosed, I wanted to get rid of both my breasts. I didn't care about the breast at that time, I just wanted the desease to be out of my body. Even though I could have had a lumpectomy, I chose not to. Although, if they could've spared my nipple, maybe I would have chosen otherwise. 

    If they can spare your nipples go for it, depending on what your doctors say off course. Then again, whether you want a mast/lump/ nipple sparing is totally up to you. Talk to your surgeon and s/he will explain to you in details what is best for you. I know sometimes it is very exhausting to get all these things thrown at you at once. Just be strong, and the best way to go through it is one step at a time. I wish you all the best, and if you need to talk some more, you can message me anytime you want. Cool


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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    Happy Saturday everyone!  I hope you're all feeling good.  Anyone want to share something positive they did today?  I think positive tidbits help!

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  • MelBell07
    MelBell07 Member Posts: 106
    edited October 2010

    I got a manicure today :)

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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    I had a private yoga class - first time I have worked out in last 2 weeks :)

    whos next?

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    I have a shopping and dinner date at Red Lobster with my hubby :)

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    I have 4-6 weeks in between my last chemo and my surgery.  Do you girls think I'm ok to go on a 1 week beach holiday in Cuba?  Probably the 4th week after chemo, so my blood count will be back to normal.

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  • MelBell07
    MelBell07 Member Posts: 106
    edited October 2010

    I went to the Cape for 7 days about 3 weeks after chemo ended and I was fine. I just took it real easy and brought my Purel everywhere.

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    Nanna- i think you'd be safe! my onco said i can get a tatoo anytime between my 2nd week and and next tx, so a vacation seems so less exposed!

    how'd red lobster fare? i havent beenthere in a while, now that i live by the coast we have quite a few mom and pop fish resturants and we've been trying them!

    i didnt do much this weekend, tried to nap which is impossible with 2 young ones. we painted pumpkins today... got my kids bathed and plopped in front of how to train your dragon so i can hop online and then make dinner!

    i miss yoga! i just came across my p90x dvds and i want to start up at least the yoga portion. i am now going to walk 1.4 miles each way to pick up my daughter from school so that should get some exercise in too! (we're a 1 car family and hubby has a new schedule this 28 days)

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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    i am preparing for round 2 (on tuesday) and i'm so nervous bc i still have not gotten over this bug.  any of you do chemo while feeling like you had a virus?

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    yeah my last round of chemo i had a bad cough and runny nose, as long as my white blood cell count was normal they allowed me to do it. In the long run it didnt effect me either way :) Just let your dr know that you have been feeling under the weater and they'll take the proper messures to keep you well!

    Good luck!

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  • caitedidruns
    caitedidruns Member Posts: 26
    edited October 2010

    Hi all, 

       I am a 26yr old who was diagnosed about 2.5 weeks ago. I haven't found many women in my area of NJ who are as young as me with this diagnosis. I am glad I am finding a network of people online who are going through this.

      I am most frustrated that my activity level and work will be interrupted by surgery and treatment. I am used to exercising daily and I am just concerned when I will be able to resume my normal level of activity after surgery. I will be having a bilateral mastectomy with TE on 11/11/10. They say four weeks, but I am unclear if thats 4 weeks of sitting on my butt or 4 weeks of just doing slow walks in my neighborhood. No one is giving me a clear answer now, but I am wondering what everyone else's experiences are with this. My surgeon told me 10 days, my plastic surgeon told me 4 weeks before ANY activity. Maybe its somewhere in the middle LOL. 

      Also waiting for the clear diagnosis is frustrating. As of now I have a 1.5cm tumor in my left breast. No mets as of yet or any signs of it. I will be having a pet scan, chest xray and bone scan done in a few weeks and will have my axillary nodes biopsied at that time too. That will give me a better idea of the stage. As of now they are predicting I am somewhere in between stage 1 or 2, but I do not want to get my hopes up. Chemo will happen, radiation is something thats up in the air until we know more about the lymph nodes and stage. I hate waiting!

      Anyways, just wanted to touch base with more women out there in their 20s whom are going through this too. :-) 

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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    hey caitedidruns,

     i'm 26 as well (as diagnosed in Aug) and live in nyc.  please let me kow if you have any questions, or just want to talk, or need advice finding excellent surgeons and oncologists.  are you close to the city?

    how did you decide on the bilateral?  do you have a family history or any genetic mutations?

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    caitedidruns-

    I agree waiting is the hardest part, it seems like it takes forever from when you get the initial dx of BC to the stage and all that after all the tests are in.

    Each person heals diffrent. I'd say take it one day at a time, and feel free to walk or excesise your lower half once you feel up to it! Your body will tell you when you're ready!

    Welcome to the club that NO ONE wants to join, but find ENJOYMENT in the friendships we make here!

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    Hello Ladies,

     I have started decadron today and think I'm going to go nuts! I am so anxious, irritable, and emotional! I saw my oncologist today,  which went well.  Except for the time I cried when I saw my weight! I have gained 20 pounds since June! :( I have my 7th chemo tomoro :( BLAH! Then one more to go! YAY! And then surgery! Don't know what surgery I'm getting yet... What kind of recon I will be able to get after rads, and how long o see a PS... The unknowns and wait are starting to pile up! I find this point I'm at right know on top of the SEs of decadron are overwhelming!

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  • DancerMel28
    DancerMel28 Member Posts: 122
    edited October 2010

    catiedidruns - this is the worst part of all of this - the waiting.  It is a frustrating time but everything will fall into place once they have your pathology after your surgery.  Yes it is an interruption to normal life - but the biggest thing you need to do is to listen to your body, rest when you need to, move around when you need to and look after yourself.  I can't answer your surgery questions as I only had lumpectomy, but I'm sure there will be others along here that will be able to answer.

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  • MelBell07
    MelBell07 Member Posts: 106
    edited October 2010

    caitedidruns: I had a bilateral mastectomy with TE's back in March. I was laid up for about a week, but then you slowly start getting your bearings. I had 4 drains that were in for 10 days, and that was probably the worst part b/c I couldn't shower or really move around too well. I had PT for a couple months though, my ROM got pretty affected. But everyone is totally different and depending on your body you might heal super quick and be bouncing around before you know it. Waiting definitely is the worst part...is there any way to speed up your testing? Once I was diagnosed, I had mammograms, ultrasounds, bone scan, CT scan and MRI all within a week. 

    Nanna: I hated Decadron!! It kept me up at night and I would twitch a lot, and it was terrible. Do you have to take it twice a day? I ended up moving the second pill back a few hours so my sleep wouldn't get as affected. 

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  • caitedidruns
    caitedidruns Member Posts: 26
    edited October 2010
    Shiramg - I live about 1.5hrs south of the city now, much closer to Philly. I used to live around 45min by train, but my boyfriend works in NYC and we tend to be there a lot. I chose Sloan because I liked the surgeon a lot and she specialized in a lot of issues we younger ladies deal with. Where did you seek treatment in NYC?  I chose bilateral because my L breast has a bunch of small tumors (3 I think all smaller than 1cm, with the largest close to 1cm) in it, I would have lost that breast anyways. I couldn't do a lumpectomy. I wanted symmetry and I do not want this sucker to come back. There is a family history of multiple cancers, but as of now we aren't sure if its due to the BRACA or some other undiscovered gene, but the pattern exists.  MelBel07: Thanks. I figured I'd have them in for around 10-11 days until my post op appt. I am supposed to do exercises starting on day 1 and I got a book of a few I can do to help keep ROM.  I am definitely not keen on the not showering thing...wow good thing I can't exercise or move much. I can't speed up my testing. I will have my results before surgery and definitely before I begin Hematology in December. As of now they are predicting early stage cancer just based on the tumor size and the biopsy of the tumor and the MRI. Waiting definitely is the worst part!! They don't want me to do the CT Scan, PET scan and bone scan are the only two left ...o and the biopsy of the nodes that somehow got swollen after the cone biopsy of the tumor.  DancerMel28 -  waiting does suck. I am trying to practice listening to my body. I used to be horrible at that. I run through pain (not always good), but that quality could push me to stay strong through this too.  texasrose361: Thanks! This is definitely a club I spent years preventing from joining. I guess being healthy really doesn't reduce our risk too much when other factors are in place. 
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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    Nana- SOrry you're feeling overwhelmed, its hard to take all this "one day at a time" but we'l def go crazy if we focus on the unknowns. Once you've taken decadron for a bit you'll be able to handle it better and the SE wont be as severe.

    Caite- Yup i realised being healthy dosent stop cancer at all! We prepare ourselves for so much in life but BC is one of those "it just happens" things that there is no way to prepare for!

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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    Caite, I ended up not selecting Sloan but a large reason was bc all the good surgeons that were recommended were on vaca (it was Aug).  I used Dr. Alison Estabrook head of brest surgery at St. Lukes Roosevelt - she is AMAZING.  Are you goiing to Sloan for oncology as well?  If you're closer to Philly and want to go there, let me kow.  There is a highly reputable place there andI have a fmily member who works ther who I can connect you with.

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  • young_pink_lady
    young_pink_lady Member Posts: 7
    edited October 2010

    Hi everyone,

    Im 25 and was diagnosed in Feb. They put me on chemo right away to shrink it as it was 8x9 so too big to remove and both estrogen and progesterone receptive. I had a bilateral masectomy in Sept. (i got expanders put in), I started taking Tamoxifan a week an a half ago, and i start radiation in about a week.

    I dont feel like myself anymore...everything has been stripped away. my hair (now a little more than peach fuzz), eyelashs, MY breasts, my weight(ive gained a bazzillion pounds). Im moody beyond controll (crying one minute laughing the next), i dont really sleep at night cause the hot flashes are soo bad, im tired all the time (i use to be go go go all the time so this is still hard to get use to), and the all embaressing vag dryness.

    Every time people see me theyre like "ohh you look so good". i swear i get more compliments about how i look now than BC. Which its nice to hear but most of the time i dont feel great about myself anyways. I mask it with an overly positive attitude. (i have always been a glass is half full kinda girl so its not hard to do) But it's hard sometimes when you feel like your in a world that no one really understands what your going thru. (which is why im glad i found this disscussion board)

    I had bought a good quality wig awhile ago and I just started wearing false eyelashes (i was doing the eyeliner thing), so i feel like i look normal on the outside. but a part of me feels like im playing a part...still not quite me. Maybe it has something to do with these big scars across the breasts that i dont feel are mine yet, i dunno.  Maybe it's just that ive bottled all this up, not feeling like i had anyone to talk to about it that would understand.

    Anyways, my main reason for coming on this was that i wanted to ask if anyone else finds it hard with romantic partners?  Me and my bf have been together for 3years(living together for about a year), in Jan/Feb we were suppost to get engaged but it was "bad timing"(or i guess thats what he thought). Our relationship BC was perfect, but now i feel like i might be loosing him. We dont connect like we use to anymore. We've only had sex 3 times since my diagnosis, and he doesnt want to cuddle with me on the couch (he says he doesnt want to hurt me or he's not in the mood).  I know my diagnosis has really affected him, and he's scared to loose me. He says it has nothing to do with how the side effects make me look on the outside. But i dont know how to get us back to the way we were. I know that book 'women are from venus men are from mars' says that i should let him do his thing and he'll come back from his cave when he's ready, but this is NOT good timing for him to withold affection. It's been about 9mo.

    Any advice??

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    Young pink lady GALD YOU FOUND US!!!

    from experince of having children and the whole i-dont-feel-like-myself phase i can really relate. before children we were a sex at least daily couple, if we missed a day we more than made up for it over the weekend... After i got pregnant and gave birth it dwindled down to once every 2 weeks and i thought it was HIM not wanting to be with me because of the weight, the extra weight ruined my self confidance. It was more of a perfect culmination of me not feeling sexy and i wasnt giving him signs that i was in the mood, plus we had a baby to take care of...

    Tie that in to the way my husband is now- always concerned about hurting my port, if my feet hurt, becoming much more aware of me and my mortality I could def see your boyfriend finding it hard to be intimate and it having nothing to do with your appearance.

    You asked how to get y'all back to have you were before- that just wont happen. It can be better or worse or different but never the same. When we take hits like breast cancer it just changes things-

    My suggestion is go to a Look Better Feel Better meeting, or something similar. Surprise him with a romantic dinner or something that he wont expect to take him mind off of your cancer, hopefully his mind will wander to being intamate.

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  • caitedidruns
    caitedidruns Member Posts: 26
    edited October 2010

    shiramg - where in philly? I am having my oncology done at fox chase in one of their satellite locations in NJ. I wanted to keep that close to home and luckily we have a decent center close to my house. Sloan will be sending them recommendations for the oncology stuff from their path reports. I think what it comes down to is that we need to trust our team. How has treatment been going for you so far?

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  • DancerMel28
    DancerMel28 Member Posts: 122
    edited October 2010

    Young Pink Lady - I know your concerns too well.  I went from trying for a baby to being diagnosed with BC in Feb and everything stopped.  For a while it was just that with surgery and appointments and travel to appointments we were both too exhausted. But over the rest of my treatment there a few times I felt like doing something, anything to feel that intimacy and my husband just couldn't. I think he felt that I was too fragile and and he didn't want to upset things.  I just recently finished rads and I'd been pushing for somehting to happen for a while but you know what? One morning it just happened - we had gone away for a couple of days and were in a nice hotel and we were relaxed and it just happened.  I'm not saying we're back to what we were but over the past few weeks things are moving in the right direction and we're rebuilding our relationship and intimacy (very strange as we've been together 13 years).

    Men are such strange creatures - they definitely deal with things differently to us!  Hope you can work through it together but unfortunaetly it takes time. (that dreaded wating again!)

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    Hello Ladies!

    I had my second last chemo on Thursday! And I am slowly reducing my decadron :) Onc. had me taking 8mg twice daily starting the day before chemo and 3 days after chemo, then 2 in AM and 1 in afternoon (early so I can sleep!) for 2-3 days, and then 1 in AM and 1 in PM for 2 days.  I still feel like a basket case! I think it's the chemopause! Crying, laughing, bitching, sweating, shivering!!! OMG! 

    My onc. gave me zantac to take with decadron... she said the irritation in my tummy might be causing me to feel hungry.  So I take 1 zantac with every dose, and it does help! I am def. eating less this time.

    But, I seem to have the SEs under control this time... thrush is starting, but I got Diflucan pills for it this time, and I don't have much pain either from chemo or neulasta! :) YAY!  No Nausea or tummy problems :)

    I am going to carve my Halloween pumpkins today :)

    Hugs,

    NannaBaby

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  • Alicia-Rae
    Alicia-Rae Member Posts: 31
    edited October 2010

    Young-Pink-Lady:  I am 24 and diganosed when I was 23. I had only been married 8 months and my baby was just four months old so after having the baby the intimacy was already a bit different. But I felt the same way as you when I was going through treatment I just didn't feel like myself on the inside because of what I looked like on the outside. But with us the intimacy dwindled because of me. I don't know if it was because of how treatment had me feeling and looking or because I just felt like something was off and we were both really stressed with a new baby and me going through this whole ordeal. But I do know that its important to talk through things because we went around kind of just dancing around each other for a while. He was afraid of hurting me physically and I just didn't want to cry anymore so we didn't talk about it. But it is important and we got through  it and we are slowly getting back to where we used to be. We have been together for almost nine years and life is definitley not normal but its starting to even out. Texasrose is right men are strange creatures! and they tend to hold things in but hopefully it will get better for you as well! I also hope your treatment is going well.

    I know how you feel about the eyelashes! I've been done chemo for almost four months and mine arent back yet so i'm just wearing the false ones! I hope they come back in soon!!

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  • young_pink_lady
    young_pink_lady Member Posts: 7
    edited October 2010

    Thank you all. It's good to know that there is hope, and that im not the only one.

    Its a strange world...and yes men are strange creatures lol

    If we can make it through this we can make it through anything. I guess it's heart warming to know that he's seen me at my ABSOLUTE worst and he still loves me....awe

    thank you all, i feel a bit better about it. And i will take the advice an try to supprise him with something romantic.

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    Hello Ladies!

    How is everyone? I hope you all had a great Halloween weekend!  I did :) I went to a costume party dressed like Cindy Lauper.  I am looking forward to the trick or treaters tonight :)  One good thing about chemo affecting my taste, is that I can't enjoy the goodies.  No candy pig out guilt this year! 

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited October 2010

    I found this link to Vancouver Coastal Health FAQs regarding breast reconstruction very informative and clear and thought i must share :)

    breastreconstruction.vch.ca/whatis.htm#wh

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  • texasrose361
    texasrose361 Member Posts: 1,829
    edited October 2010

    Is that you in your cindy lauper wig? looks cute!

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  • NannaBaby
    NannaBaby Member Posts: 510
    edited November 2010

    Yup, that's me in my cindy wig :)

    How is everyone? I am still feeling like crap... getiing dizzy spells and weird pressure in my head for the past week.  I drove myself to the hospital today because I was worried and my oncology nurse wanted to get me examined.  They gave me shit for driving.  I was told I shouldn't drive in case I faint.  I got a head CT done today and in came out normal.  So, the doctor thinks I am getting migraines.  I've had migraines before, but nothing like this!  I am taking Axert, and it seems to help a bit, but not completely.  I hope I get at least a few days of feeling good before my next/last chemo next wednesday.

    Take Care!

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