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I know I cant be the only lesbian out here?

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  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited May 2012

    You are very right ..There isnt anything out spacifically for Lesbians with breast cancer and I noticed even here there isnt much activity...I have a group of very supporting and very fun women that I hooked up with here but I think for us its just a tad different... Again, Im so sorry for your loss...you cause is a good valant one for sure...you are here for yourself as a care giver, your family and your partner...wonderful. 

  • Clinks
    Clinks Member Posts: 2
    edited June 2012

    Hello I am new to this site.

    First let me send a hug to Bunker for your loss. So much battling we all have to do in this world. So much! And our loved ones, too.

     I'm newly diagnosed Stage 4 mets to spine and lungs. I am bisexual.

    Just began my second cycle of Taxol and Herceptin. Seems to be working so far, at least on one obvious breast tumor. I anxiously await follow up scans the end of this month to check progress on stuff in spine and lungs. I've been lucky - side effects have been fairly mild so far, so I'm still working at my job. Wish I could afford to work part-time instead of full-time, but I trudge on, grateful that I can at all. I am single and live alone, so it can be hard some times. I am very grateful that an ex, a critical care RN no less, came back when I was diagnosed and provided a lot of support, including some much welcome snuggles. She's busy though, and back to living more of her life (but we are still in touch and have some social plans in store).

    I seem to have noticed (now three months into this) that the urgency of the initial diagnosis has worn off and people are getting more back to their lives...which is good, but I remain stuck with my new life and its new needs. I don't mean to whine - people need to live their lives, but I had a feeling back in the beginning that all of the promises of constant support from some friends was unrealistic. Even though I was slightly prepared for this, it's bumming me a bit right now while I re-arrange my support plans to hopefully keep them more sustainable. Now that I feel I'm getting used to the effects of the Benadryl while I get my infusion (and don't feel so much like I'm on heroin, like I did at first), I'm wondering about driving myself to and from the infusions. I basically feel ok...can converse, look around, etc....and would only go straight home. I don't have too far to go. Is that completely unheard of? I've come home and napped then got up and driven some quick, easy errands and was ok. Thoughts? If this is considered a bad idea, I won't persue it. My infusions are x1 per week. I would still like to be open to getting transported/visit with friends, but would also like to be able to take care of myself when it would help, too. Make it more like they are giving me a break, rather than the other way around. So is this insane or do people sometimes do this? Is it another one of those cancer situations where we're all different and feel differently so it's hard to say?

     I'm hoping to find a local support group soon, to help me with advice and get to vent a bit now and then!

    So grateful to find this thread!

  • Clinks
    Clinks Member Posts: 2
    edited June 2012

    ps...for anyone who hasn't heard about it already....

    I just found out about this breast cancer documentary and I'm excited that it's playing in my city in two weeks.

    I can't provide an exact link (need to mess with popup blockers first) but if you go to youtube, you can search for PINK RIBBON, INC. and watch the trailer. 

     peace!

  • moderators
    moderators Posts: 8,558
    edited June 2012

    Hi Clinks, and welcome to BCO. Here's the link to trailers, clips and interviews for the film you mentioned: National Film Board, Pink Ribbon, Inc.

    For more insights and experiences from members who have dealt with Taxol and Herceptin infusions, you might want to check the Search function with "Taxol Herceptin" as your keywords (without the quotes) to find many posts where both have been mentioned. Or post on the very busy Stage IV and Metastatic Breast Cancer ONLY forum too.

    The Mods

  • mariabgood
    mariabgood Member Posts: 2
    edited June 2012

    There are definitely other lesbians out here who are going through breast cancer, or who have been through it themselves or loved someone who has had it. 

    You can find a growing community of lesbian-identified women affected by breast cancer at: https://www.facebook.com/groups/LesCanSurvive/.

    You are not alone!

    Maria (lesbian survivor of 2 breast cancers)

  • JustJean
    JustJean Member Posts: 170
    edited June 2012

    Thanks, Mariabgood, I just requested to join the group. This is my fourth time with breast cancer - two lumpectomies (1 each breast), 1 quandrantectomy on right breast, and now the bilateral mastectomy where they found cancer in the supposedly unaffected breast.

  • Lovegolf
    Lovegolf Member Posts: 75
    edited June 2012

    Jean

    So sorry to here this is 4th time.  You are not alone many of us here have been through it.

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    Hi, new to group.   Lesbian and just diagnosed with BC May 7th.  Had lumpectomy on May 16th.  Presently, I have to decide whether or not to have chemo, as my Oncotype came back at 21--intermediate risk.  My choice says the onco.  How do I decide that?  

    I do not have a partner currently and can't imagine going through this alone.  I do have a 17 yr. old son but hate to have him take care of a sick mother at his age.  

    I am ER/PR+, neg. nodes, HER2-  and BRCA negative.  Other than the Onco score, I was mentally ready to have radiation and be done with it (for now).   Now this and I am just not sure what to do.   I am the kind of person who will do what it takes, however, chemo scares the shit out of me.  

    Thanks for listening...glad to have found my sisters here. 

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    Thanks for the FB link, Mariabgood!

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Hi Lisa,

    Sorry you have this difficult decision to make.  This thread hasnt been very active since my dx in March but just recently its picked up...so Welcome.  I wasnt given the option for chemo..they didnt think it necessary for my tx..but I did just finish Rads, which was ok...just kind of a pain in the ass to have to take time out every day and work it around life....the burns got bad for me too at one point but was perscribed some good cream and some pain med to sleep.  Still have a hysterectomy to look forward to next month and then Tamoxifin.  I dont have a partner either who's shoulder to cry on to I can relate there...I have two sons and a daughter 21, 19 and 17...my 21yo lives with me but hasnt had to do anything for me except to bring me a cheeseburger after my lumpectomy ...after all he works for Mc'Donalds...

    Im here if you want to talk ..any time.

    Cyndie

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    Hi Cyndie,  thanks for the reply.   I just feel like damned if I do and damned if I don't.   

    I hope all goes well with the hysto...sounds weird but I'd rather have surgey and all my parts removed than chemo.  

     Lisa 

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Hi Lisa,

    Chemo scares me too and Im glad I didnt have to go there..however I think a lot of the fear I have of chemo is what I've heard about it...being ill, and hair loss...I've heard some ladies say that rads was worse than chemo for them..maybe like everything else its all individual.  idk..I wish you luck with your decision...its not an easy one to make...surgery is easy to deal with...you prep...go to sleep..wake up and just try not too hurt so bad..and you slowly get better and better..chemo even in the name is forboding...but you really NEED to do what is going to be right for you with the best outcome possible..

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    So I decided to have the chemo.   I am going to fight with everything I have.  I want to give myself the best chance of this not coming back because I have so much life left and a beautiful son to live for.   

    I've read too many stories of people not having the chemo, despite a dx of low grade tumor and no lymph involvement...this is the right thing for me to do.  

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Good for you Lisa and good luck!  How many do you have to have?  Does it start on 7/5?  Do you need rads also? 

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    I will need 4 cycles, once every 3 weeks.  Yes, first one is July 5th (so it will be a hell of a 4th of July party for me).  I will need radiation after chemo, which I really don't understand why, but if I can make it through chemo, radiation can't be that bad.  

    My son is out of town till July 15th and I had to tell him today.  It just broke my heart.  I think my niece will be flying down to stay with me during the 1st treatment.  She is a fighter like me, so i can't think of anyone else I would rather have by my side.

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Its good that you will have someone staying with you.  My son has been here with me..although he would have been even if I was healthy..lol..just so happend that I got cancer. He has been great tho..How was your son? 

    I've heard of a lot of people having to have rads after or or before chemo..I think its just normal protocol...better to be safe kind of mentality..I completely agree with..I wasnt offerd chemo as a treatment option so I cant offer any advice on that but I can when you start the rads..Just let me know.  How any talk of hormon blockers after?  I know you are probably wanting to deal with just one step at a time and Im jumping way far in the future for you. 

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    yeah, will need Tamoxifen since I'm pre-menopausal.   

    My son has been great through the surgery and everything...even though he was graduating from high school in 2 weeks prior to surgery.   I'm not sure how he will handle all this, though.  Seeing your mom lose her hair and feeling sick (which maybe won't happen), is hard for a kid.  He's mature and everything but I still want to protect him.  When I told him this morning he sounded so sad.  You know I feel like I'm breaking his heart (even though it's not me that's doing it).   I've put a call out to friends and family to check in with him from time to time over the summer.   You know how boys can be, they don't like to talk about feelings with their mothers, so I'm trying to gather a support system for him too.  

    thanks for chatting... 

  • tjay
    tjay Member Posts: 4
    edited June 2012

    another lesbian on board here! Laughing just poppin' in to say, hi all!  had my mapping done on friday and start rads in two weeks or less.  getting closer every day to kickin' this cancers ass!

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Welcome tjay...good luck with your rads..I just finished the week before last. You'll kick its ass allright!! 

  • tjay
    tjay Member Posts: 4
    edited June 2012

    did it make you tired? just worried about working plus rads everyday..i drive a city bus

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    Welcome Tjay and good luck with your treatment!  

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    TJay...I had to adjust my work schedule to accomodate the centers hours and I chose to do my treatments at the end of my work day which turned out the best option as I found I was most fatigued right after treatment...so on those few occasions I had to change my treatment time to earlier in the day it pissed me off because I new my day was shot.  What kind of hours do you drive?  My job is pretty seditary (sp)...I work from home and its pretty much all computer and phone work so I wasnt very physical which I am glad for..I had just joined a gym prior to my dx and I did quit that..I couldnt see throwing money away and i just didnt have the energy..Its coming back but I'm still really tired...

    Lisa....how are you holding out there in Naples with all this rain???

  • Lisa614
    Lisa614 Member Posts: 17
    edited June 2012

    It has been raining all day and it's been a very gloomy day (which I did NOT need today).   We do need the rain as things are very dry here but I sure could use some sun right now.   Can't complain because we usually see the sun every day.  But I think this is going to go on for a few days.  

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    The rain has made me so tired..But at least they are saying the big storm will more than likely go west.....they are predicting some heavy stuff within the next 1/2 hour or so here...I love sleeping to the sound of the rain and like you said its needed..but it also means I need to have my lawn mowed sooner than I had wanted...sucks for those people here on vacation tho.

  • tjay
    tjay Member Posts: 4
    edited June 2012

    thanks Cyndielou, for the info. i work a split shift, up at 4 30 am, home by 11 am, and then back by 1 30 pm, and home by 6 pm...makes for a very long day. thinkin' bout only working my morning shift on my last 3 wks of rads...gonna do the double whammy a day for 4 wks verses the once a day for 6 wks. guess i wont really know till i get started with it... ahhh hell....stupid cancer!  by the way, thanks to all for the welcome Laughing 

    have a great day!

    Tj

  • cooka
    cooka Member Posts: 62
    edited June 2012

    Hi all, just checking in to say hello and welcome! Hope everything is progressing well with tx for you:) 

  • Cyndielou
    Cyndielou Member Posts: 1,459
    edited June 2012

    Hiya Cooka!!  Thanks!  How are you holding out in that heat there in PHX?? I Lived there for a few years ..never bothered me much....the humidity here is a bit much.

  • Lisa614
    Lisa614 Member Posts: 17
    edited July 2012

    Good morning ladies....just checking in and wondering how everyone is spending their July 4th?   For me, I will be keeping a low profile today.  I start chemo tomorrow.    Several picnics and parties going on, but I am passing.  Imagine that, me the party girl, opting to stay home.   I view it as just another way I am taking care of myself.  

    I find a lot of comfort in reading some of the posts on these boards.  Some things are frightening, must mostly I find them comforting.  

    Met a beautiful woman a couple of weeks ago....wish it were a good time to start a relationship but probably not, as the god's would have it.   Ah cancer sure has a way of slowing things down.  

    I hope everyone has a wonderful, fun, and safe holiday celebration.    Even though we don't have all of our rights, we are making progress in this country.  

      

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited July 2012

    Hi Lisa, 

    Just hanging close to home.  This last infusion took it out of me.  I was normally incredibly energentic despite the infisions. Just 1 left.

    VVH 

  • bookart
    bookart Member Posts: 210
    edited July 2012

    I'm probably going to watch fireworks with my family, at least some.  Younger son may do something with his girlfriend's family. 

    As we have the house to ourselves this morning, and we're both off, we're actually planning on a little intimacy (rarity, these days!).  Aaahh.  But better put the Do Not Disturb sign on the bedroom door, because the son stinkers have a habit of just popping in!