Hi I'm SOOO Excited to find this forum!

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LRAllenM12
LRAllenM12 Member Posts: 123
edited June 2014 in LGBTQA+ With Breast Cancer

Just diagnosed (Sept 16 -- the day after my daughter's 11th birthday) with breast cancer.  My partner and I are having a tough time as we live in the South -- and in a very conservative area where they don't necessarily view my partner as "family."  They of course list  her as friend/other on everything, and I'm very afraid that when I start my surgeries, etc, there will be issues with the doctors/surgeons/nurses sharing information with her.   I don't need the stress of her having to fight for information along with the stress of the cancer.

With that said, yay that there's a place just for us on here! 

Here's my background:

I'm 33 with two great kids -- 8 and 11 -- both girls, in a busy career with a wonderful partner.  We just recently got in a great place in life -- new house, promotion at work -- living the American dream, and then this.  It was so unexpected.  She doesn't have anyone to turn to.  I'm sure that she feels differently as a woman about my breast cancer -- as she realizes my fears about losing my breasts, reconstruction, etc, and my fears of problems with intimacy later.  

WHAT A CRAPPY MESS!

I'm just glad that I've found some sisters to share with.  Can't wait to meet you all.  I'm currently waiting for my appointment at MD Anderson in Houston, Texas -- we are only an hour away!

Laughing

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  • dee1961
    dee1961 Member Posts: 1,672
    edited September 2009

    Hi Lisa,

    So happy to meet you, but sorry about the circumstances. I live in Columbus Ohio, and was almost surprised at how well my partner and I were treated during my hospital stay and doctors visits. I just let them know up front she was to be treated as my partner, and that they were to tell her everything. I hope it works out as well for you both. I was dx in Jan of this year and had bilateral mastectomies with tissue expanders for reconstruction in March. I am still going through the reconstruction and hope to be done by December. My dx was DCIS w/ IDC stage 1 grade 3 ER+PR-HER2+++. No rads, chemo and declined hormone tx.  Where are you as far as your BC treatment? I hope to hear from you again soon!

    Take care,

    Dee~ 

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    Well, just decided today to stay here in our own area and proceed with a modified radical on the left breast with tissue expanders.  I am currently a D cup, so when I meet with my plastic surgeon this week, I am going to ask that when they do the implant, they bring me down to Cs because it will take less time with the expander, and when I have the lift and reduction on the reamining I will be nice and perky.  Because during my surgical biopsy there were no nodes tested, we really can't be sure of my stage until after the mastectomy.  The surgeons are "150%" positive that it's moved to my lymph nodes, which is why I staged myself at 2A.  After we see what's going on with the nodes, I will see the oncologist and start chemo.  They said I would probably not need radiation but that I would need the pill form of the chemo for 5 years as well as the hormone therapy as I am ER+.

    I asked about a double mastectomy, but the surgeon said as of now I am all clear on the right side and no insurance in the world would pay to remove it.  So, I'm okay with that, and I'll get to keep nipple sensation on one side -- that makes me happy! LOL.

    I will have the procedure early next week, and I'll post the exact date when I know.  I am excited to have this out of me -- really -- it's a relief to make the decision.  I've looked at pics, etc of the reconstruction with the expanders, and I think it looks much  better -- and a lot less painful.

    Could you tell me a little about how your expanders are going?  Any pain associated with them?  What about emotionally?  Were you shocked at how you felt to look at yourself in the mirror?  I worry about that the most -- more than losing my hair or being sick all the time.

    So far we've received great treatment at the surgeon's office so I'm hoping that carries over into the plastic surgeon and oncologist's office.

    So glad to connect with you on here, and I hope your recovery continues well!
    Lisa

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  • dee1961
    dee1961 Member Posts: 1,672
    edited September 2009

    Lisa,

    In the begining it didn't bother me to lose my breasts because I was getting the cancer out of me. I have to admit though over time, that it has become more emotional for me. I guess it is part of a grieving process we all go through. The tissue expanders for me have been hell. Please don't look at me as the normal. I have talked to alot of ladies that had some pain, but very tolerable and usually only for a few days after the saline fills. I think the key is to take your fills slowly. I decided on the tissue expanders only because I didn't want any other invasive procedures. Do you know when you are having your surgery yet? Have you told the kids yet? You will do fine and you will get through this. Hang in there sista!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited September 2009

    So sorry to see another Lisa on this forum, but glad you found this spot!  I had a bilateral mastectomy without reconstruction.  I was also a D cup and my insurance covered it even tho my other breast was clear.  It's a personal choice.....for me I didn't want to go thru the pain of reconstruction or risk a reoccurance in the other breast....I wanted them gone, gone, gone!!    I really love going without a bra for the first time in my life. 

    I wish MD Anderson was close to me....how nice you are only an hour away.  I really like the fact that they have specialists in breast cancer.  My oncologist is great, but he deals with all cancers and is not an expert in breast cancer. 

    I see you are Her2+ - that means you will get herceptin!  That has done wonderful stuff for many of us :>

    I wish you well and hope your surgery recovery is quick and painless!!  lisa

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  • Hedberg3312
    Hedberg3312 Member Posts: 10
    edited September 2009

    Hi Lisa! I'm glad that my wife found this for me. I haven't been diagnosed yet (lump in my left breast that's visible through the skin...ick) but we're going through pretty much the same worries. If you or your partner ever need anyone to talk to, feel free to send an email. (man, i hope that didn't sound creepy!)

    Good luck with everything

    Shane and Andy

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited September 2009

    Hi Lisa,

    Im in Kansas.  I just finished my reconstruction phase so if you have any questions about that feel free to ask. 

    I have to tell you that the Dr that told you that no insurance company would cover the cost of removing a healthy breast, was wrong.  I had my other breast removed after treatment, 1 1/2 yrs later and then did reconstruction, lots of women have double mastectomy with cancer only on one side.

    Teresa

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    Thanks, Ladies!

    I think today I might stay home and stay on the phone with insurance because ONCE again yesterday I told my surgeon that I wanted the other one off, too, because I felt that reconstrcution would be easier "starting from scratch" -- I'm worried about them not being able to "match."  I spoke with my insurance (BCBS) and they said that as long as the doctor deemed it medically necessary and sent in a predetermination, then they would cover it.

    Should I go to another surgeon?  This one seems to not be too worried about it.

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  • dee1961
    dee1961 Member Posts: 1,672
    edited September 2009

    Hi Lisa,

    I agree with having a bilteral mastectomy for a couple of reasons. One, so you dont have to worry about reocurrence in the other breast, and second, so the reconstruction will be easier to match. All of these things need to be addressed with your breast surgeon and plastic surgeon. Rads can complicate recon, so make sure they talk to you about that too. Definitely go to another BS to get what YOU want. It's your body. Take care!

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  • dee1961
    dee1961 Member Posts: 1,672
    edited September 2009

    Lisa,

    I was just thinking about you and wondering how your oncology appointment was?  

    I hope you got some good information and are doing okay.

    Dee~ 

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    It went great with the oncologist today!  He's working hard to get insurance to approve the bilateral versus just the left side, and he told me more than likely my treatment would be as follows:

    6 weeks after surgery I'll start chemo (TCH with Herceptin) every 3 weeks for 18 weeks.  After that, I'll continue with just the Herceptin for a year, also every three weeks.

    He told me he fully agreed that the other breast was at high risk for IDC, and that it should be removed for preventive measures.  He basically said everything I wanted to hear and was very kind and soft spoken. 

    I'll keep everyone posted on the insurance's decision on the bilateral.

    Everyone have a great weekend!

    **Lisa :)

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  • lesamariekey
    lesamariekey Member Posts: 26
    edited September 2009

    Hi, I was told by my Dr. that with the chemo that we have today that we do not have to have both breast removed. I have TNBC and I had half my breast removed. He said the outcome would be the same 5 to 10 years down the road......So he said," to keep my breast." I am doing Chemo and Rads.I have to do 9 rounds of chemo and 9 rounds of Rads. I have had 3 surgeries and it took me 6 weeks to heal from my surgies. I am finished with my 3rd round of chemo...I lost my hair during the first round of chemo about 2 weeks into it....At least I know it is working......Hope all goes well for you and your family....It helps having a great support group......My Wife has been a Blessing.......Aka...ALABAMA

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    I hear the 2 week mark after that first treatment is a common time to lose your hair, and I've charted mine, and that puts me bald just in time for Turkey Day!  I think I'll wear a Pilgrim Hat to dinner.

    All the surgeries sound a little scary.  It's almost like the second I heal from one thing, they're going to  knock me out and do something else.  For me, the month of October will be a total haze!

    Thank God for my wife -- she's really stepped up and made me feel comfortable that everyone with the kids, soccer, school, etc, will be taken care of.  She's a godsend!

    Surgery Tuesday the 6th!  I'll update after!

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  • dee1961
    dee1961 Member Posts: 1,672
    edited October 2009

    LOL Lisa,

    A pilgrim hat is always festive on turkey day! WOW, I have another friend that is having surgery on the 6th, and another getting married. Try not to be scared, you will do just great!  I am glad you have a awesome partner to help you through it all. Don't forget we are here for you too, anytime you need, just give a holler :)  Update us as soon as you can, I am sending all good thoughts your way!

    Take care,

    Dee~ 

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  • Kate0574
    Kate0574 Member Posts: 120
    edited October 2009

    Hi Lisa,  I am now a two year survivor, weeehaaa.... I had a right breast mastectomy on 3/31/09 and started my reconstruction a year after chemo.... (no radiation) you seem to be very positive and I love that... yu will do great, good days, bad days.. but who cares, its all to get to the end... I lost my hair a couple of days after my second treatment.  it was kinda nice being bald during the summer... you get winter... have fun with it like you said wear cool hats... my husband was a great support as was my 15 yp son (13 at the time) all though I am not ina same sex marriage and I do work in the Insurance industry and I deal with domestic partnership all the time.. however I live in California and here all you have to do to get through all the loops holes of giving information compliant with the HIPPA laws... you can get a state certificate whick entitles her to your information.. not sure if Texas has that or not.

    Stay strong during your surgery, treatment and healing process... I am here is you have any questions!

    Here's to a speedy recover to survivorship!!!!

    Kate

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Yeah, I had to some paperwork because it's all crazy down here in Texas, but I think I have it fixed so that she cannot be denied access or information.

    I am a little excited about not having to fix hair or shave, and throwing a hat on every morning sure is a lot easier than taming this crazy head of hair!

    Great to hear survivor stories -- they make me even more positive!  I'm trying to stay that way, but the closer I get to my surgery (Tuesday) the more freaked out and worried and a bit scared I get!  I'm just trying to stay calm!  LOL!  It's hard though.  I can't believe I'm going to let someone cut them off.  It just seems, I don't know, INSANE!

    Thanks again for the info and the positive attitude!  I'll be back on my feet in no time!

    Smile

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    I'm back.  I made it, although it was pretty crappy!  They tested 19 nodes and only one was positive, so we're happy about that.

    My plastic surgeon filled my expanders to 250cc during the procedure, so I had some serious pressure, but each day is a little better.  Thursday I get 2 of the 4 drains removed and I will get unwrapped and get put into a surgical bra.  This has GOT to be more comfortable that this mummy wrap!

    I'm in good spirits and glad it's over!

    How's everyone doing?

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  • dee1961
    dee1961 Member Posts: 1,672
    edited October 2009

    Yea! Glad you are back :)

    Take care of yourself and take it easy. I sent you a PM.

    Hugs to all!

    Dee~

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Check out my website.  I'm documenting my progress, photos and all.

    http://lisarmoseley.blogspot.com

    -Lisa

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  • dee1961
    dee1961 Member Posts: 1,672
    edited October 2009

    Nice blog Lisa ... Keep on keepin' on sista :)

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited November 2009

    Thanks, DEE!

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    Awesome web site!  Hang in there with the recovery.  Did you start TCH yet?  Last year I had my 4th treatment of TCH right before turkey day.  It'll be over before you know it and you'll be looking back remembering like me :>  lisa

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  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited November 2009

    I start my TCH on Wednesday!  I should be okay Turkey day, and then I'll just spend the rest of the weekend laid up in the bed.  Maybe I won't be too sick.  I really have no idea what to expect!  I'm telling you, all the puking and low energy in the world CANNOT be as bad as the post-surgical pain of of the Bilateral MX.  I mean, that was like I'd been hit by a damn truck!

    I'm looking forward to getting it started, as each treatment is me getting one closer to finished and getting these expanders outta me!

    :)

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  • pantherlinn
    pantherlinn Member Posts: 7
    edited November 2009

    Lisa,

    I had a rough time with all tx, but with that said I just want to tell you that I was dx in 11/06, bilat 12/06, chemo, rads and hyst in 07.   Recon in 08. I can hardly remember the pain, and other complications.  They seemed insurmountable at the time.  You can and will get through it, easy or hard and in a very short time it will all seem like a bad dream you have finally awakened from.  If things are hard, just remind yourself, it is only for a short period of time.  I counted all the days since birth (somewhere close to 19000)  then said 4 mo is nothing.  33 rads, nothing.  That helped me.  Also, remember that you have a loving partner to help you thru this. 

    Linn

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  • dee1961
    dee1961 Member Posts: 1,672
    edited January 2010
    [HAPPYNEWYEAR189.jpg]
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  • casaredonda
    casaredonda Member Posts: 37
    edited January 2010

    hello all,

    I was diagnosed 2 days before xmas 2006 and spent 2007 in treatment, bilat mastectomies (as I elected not to chance a recurrence at least to the degree that this option works), 6 months of hellish chemo, 6 weeks of rads, and now 2 year estrogen receptor blocker (Arimidex), and coping ok with the side effects of that which are so annoying.  In relationship for 29 years and married last year during the short window we had in California.

    I'm sporting the flat look, not really interested in prosthetics cause I'm older now so that's not important and altough I feel self conscious from time to time, it mostly doesn't worry me, I had great insurance at that time (through my partner's employer) and they paid for everything.

    She was laid off in 2007 so we have been on cobra since then until just today when we decided we could didn't want to struggle to pay every month.  I can get the Arimidex in Canada for much less than in the US and we'll pay for my follow up appointments at the onco's office.

    BC has helped me feel braver, stronger and more adventurous than anything else.  I can get through anything.  I hope  all of you go through all your treatments easily and feel better soon.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited January 2010

    Yeah it does make you realize you are stronger than you ever knew. There is a razor shape clarity that comes with cancer. I am starting now training to do the 5K Komen in town on 4/17/10. There was a time when I would have told you I would never run a race..only for last call.  Now it is so important to finish the race and "use" my body for something I want to do.

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  • dee1961
    dee1961 Member Posts: 1,672
    edited February 2010

    Just wanted to pop in to say hello..hope everyone is doing well :)

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  • dee1961
    dee1961 Member Posts: 1,672
    edited February 2010

    Where did everyone go...so lonely in here anymore  

    Frown

    Take care

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  • casaredonda
    casaredonda Member Posts: 37
    edited February 2010

    Hi Dee, 

    I had not visited for a while....I spend more time on the Arimidex forum but I like to come by and chat with my lavender sisters.

    so I'll visit again soon, doing ok, working full time and having a great life with my beloved life partner and our 2 dogs.

    take good care 

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