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new here facing 2 mastectomy

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Posted 5/30/2006 8:38 PM (GMT 0)
Hello All...

I just finished chemo about a month ago and have tested positive for the breast cancer genes. i am having a double mastectomy and my ovaries removed. Would love to hear from someone that has had this done. I am in Los Angeles Calif.

Thanks for any help.

Eve

Posted 5/31/2006 2:37 AM (GMT 0)
Hi Eve. I did not have this much surgery, but others here have, so I am sure you will hear from them. Just wanted to welcome you to this exclusive club. Sorry you have become a member, but you will find great support, empathy and information from those who are here. Lauri in Minneapolis, MN
Posted 5/31/2006 4:20 AM (GMT 0)

Laurie...

Thank you for the welcome. I am looking forward to getting to know you all. I would say this club is filled with some wonderful strong women and i am proud to be among you.

Eve

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Posted 5/31/2006 5:32 AM (GMT 0)
Eve,

 

I am glad you found us.  I am in the LA area.  Maybe we could meet or at least talk by phone.  I am a little over a year out of chemo and last year at this time, was just starting rads.  I had a single mast. and Tram Flap reconstruction just this January.  Feel free to email me, if you want to talk.

 

Kathy

Posted 6/1/2006 2:05 PM (GMT 0)
Hi Eve, There are several members here who have had bilateral mastectomies, a few who had ovaries removed and some of know they carry the gene. One of our old members started a website some time ago for special women like you that you might want to visit. FORCE, Facing Our Risk for the Cancer Empowered. http://www.facingourrisk.org/ I hope you will check it out and see if you can't get your answers faster. Stay with us here and let us know how you are doing. You sound like you are handling it all great. Life is not easy, is it? Hugs MK
Posted 6/1/2006 8:27 PM (GMT 0)
MK,
Thank you for the information. No life isn't easy but I look at my cancer as a blessing in a way. I suffer from severe Panic Disorder and Agoraphobia. Because of the cancer I can do things I feared and I am giving back all that I can. So I am trying to stay positive about it. I'm glad I found this site. I am looking forward to meeting all of you.
xoxoxox
eve
Posted 6/1/2006 8:32 PM (GMT 0)

Eve-welcome to the board, I had a double mast. in 2001.  I had stage IIB, 4.5cm tumor with 5 of 49 lyumph nodes positive.  er-/pr-, and her2neu 3+++ (so i had a year of Herceptin).  no reconstruction. i did not have any gene testing, but did decide to go ahead 3 yrs later (2004) and have ovaries removed (i had to have surgery for a hernia repair and did the ooph. at the same time).  i am glad that i did... hot flashes are not so bad, thats really the only difference i have experienced.  i just hit my 5-yr cancer anniversary (YAY) which i had been given a 50/50 chance to get to.  so life is good!  (knock on wood).  please let me know if you have any questions... good luck with your decisions... and i *love* your tagline! hugs - stefanie

Posted 6/1/2006 8:39 PM (GMT 0)
Stephanie...
Thanks for the reply. CONGRAT'S on your 5 years!! We are some really strong women! I was wondering about you not having the reconstruction, I was thinking about not having it, but am not sure as my husband says no problem but I don't know if emotionally I could handle it. i have small boobs anyway and am not a vain person...I live in L.A. and could care less what size boobs I have..lol. How was it for you in the beginning?
nice meeting you!
xoxoxox
eve
Posted 6/2/2006 1:18 AM (GMT 0)
Hi Eve,Welcome.My name is Tammy and i had a double mastectomy.I had left breast removed 1 year ago and the doctor said i was at high risk for cancer going to the right one so i told them to take that one to in Aug.I had chemo and recently had ovaries removed and bladder repair.Im on Tamoxifan and im doing fine.I chose not to have reconstruction and im happy with my decision,you can get prostesis in any size you want.Im having hot flashes and im hot all the time so i never wear the prostesis,you get used to it.Someone on this forum said they was hot while driving and they took their Boobs off and through them in the backseat.Its so good when you can laugh about certain things and i laughed at that.  Keep us posted,God Bless,   Tammy
Posted 6/2/2006 2:43 AM (GMT 0)
Hi Eveie,

I haven't posted here in a LONG time but came by tonight and saw your post. Welcome to the club and I love your attitude!

I was dx'd with metastatic breast cancer...but have gone 1 1/2 years almost with no further recurrence so far. I had a left mast and lots of stuff under my arm, etc. removed. I kinda wish I'd had a double so I would match. tongue

I don't want to get a reconstruction.....I don't mind being flat since I was only an AA to start with.....but the falsie sometimes moves around and my bra gets twisted a bit and I work with a lot of men. LOL I have stories I could tell!!! I always go braless at home so it would be nice to match I suppose. I hate to scare people who come to the door.

My boyfriend also has agoraphobia and severe panic attacks so I can very much sympathisize with you. He rarely leaves the house but went with me to chemo (but so medicated that I had to drive!) and he has been very supportive. I'm SO sorry you have to go through all this! BUT....it has changed my outlook on life and priorities. Stumbling Blocks can be Stepping Stones depending on how you use them, right?

I'm also on Tamoxifen and Effexor for the hotflashes so they aren't too bad anymore.

God bless you and find the things to laugh at...it helps LOTS!

love,
Beth
Posted 6/2/2006 3:39 AM (GMT 0)
Hi Tammy and Beth,
Boy I love this site. I already feel at home. thank you both. Believe me when I say humor is the key for me and my healing. It got me through my panic and now my cancer. I learned this from my mom who died in 1983 of colon cancer.
You all keep saying things about the hot flashes. Chemo put me into menopause and I have them all the time..will they get worse when I don't have my ovaries? thank you for mentioning Tamoxifen..You reminded me to ask my Dr. if I am still going to take it.
You ladies are great!!!!
xoxoxox
eve
Posted 6/2/2006 3:43 AM (GMT 0)
Beth...
I am a Leader in an online support group for panic and agoraphobia...there are men and women in it..if I can be of any help to your boyfriend let meknow. I have gotten my freedom back and I know how he feels.d Feel free to e-mail me. Sorry if this was not appropriate for this site.
xoxox
eve
Posted 6/3/2006 5:53 AM (GMT 0)
Eve,I was also put into menopause by chemo and alot of hot flashes and i thought when i got my ovaries out that it would be worse but i dont notice any difference,I guess i was allready used to it.  Tammy

Posted 6/3/2006 9:05 PM (GMT 0)
Eve,

 

At the beginning, I thought I didn't want reconstruction.  But, after a year of wearing the prosthesis (a large one), I decided I didn't want to do that the rest of my life, so in January, I had TRAM flap reconstruction.  I am so glad I did.  I'm just waiting for auth from my insurance for the nipple and reduction on the other side. 

 

I was put into menopause by chemo, also, and since being on Tamoxifen, I think they've gotten less often and severe actually.  The summer heat makes them come on more, though. 

 

When are you having surgery?

Posted 6/8/2006 7:24 AM (GMT 0)
Hi, Eveie-

I am 'breastless near Seattle', with no regrets. Lefty had cancer in 1996, then again in 2002, so it was mastectomy time. I had just had a hyst the month before, and was so glad I had opted for prophylactic ovary removal at the same time. Surgical menopause has been quite an ordeal.

A year later I had the right breast removed prophylactically. We have a very strong familial history, and have worked with a geneticist and have each banked our DNA for future testing as new discoveries are pursued. (I have a 20 year old daughter.) My sister was tested and turned up negative for the BRCA genes ... but she had bc at 37, I was 40 and 46, and mom had it at 65, 69, and 75.

At this point, all three of us are breastless. Frankly, I LOVE not having to deal with a bra - but then I've always been one to be comfortable with 'doing my own thing'! LOL! (I totally enjoyed being chemo bald.) We are so fortunate to have many options for reconstruction for those who wish it.

Congrats on finishing your chemo - and best wishes to you on your upcoming surgery! Jan
Posted 6/9/2006 2:51 AM (GMT 0)
Hi Eve and Jan, Welcome!
I had a lumpectomy 6 1/2 years ago, chemo and rads...all is well...

Please feel free to jump into any post any where....we're glad you found us, but sorry you get to join the club.... frankly though, we're a pretty good group to hang with!

L&H,
Lori
Posted 6/10/2006 2:15 AM (GMT 0)

Eve- as far as the no reconstruction goes... my Dr.s said at the time (2001) that i wasn't a good candidate, since they had gone into my chest muscle fairly deep... at that time i just wanted to get thru the treatment and get on with it, and i was not capable of making a rational decision anyway (diep flap? tram flap? implants? take fat from my butt? what? etc etc) so i figured i'd just put it off til i was ready (hubby was fine with that).  Then, as time went on, i just was so focused on making it to 5 years, i didn't want to spend time with a huge surgery and recovery time... and thats where i left it.  Hubby is resigned to the fact now, and has never given me any problems about it.  (i just tell him 'hey at least i'm here!').  i was large breasted, 40D :-)

as for the hot flashes, i would say they are stronger than when i was in chemo-manopause, but not that much.  caffeine, spicy foods, and alcohol late in the day will cause me to have 2 or 3 strong ones at night, but thats the worst of it.

hugs!

stefanie

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