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rare breast cancer

kai29's picture
kai29
Posts: 1
Joined: Aug 2012

im 29 I was told im the 28th person in the nation with my type of cancer I have a sarcoma with a little bit of breast cancer to be so young just making 29 and to have my breast removed going thru chemo and radiation is hard and scary im the first in my family to have cancer my parents are no longer here and I have no one to talk to I have my four kids and three yonger sisters I have to be strong for I don't want to scare my family with my thoughts I believe I will be ok im a fighter I just need to know its ok to be scared and cry sometimes

carkris's picture
carkris
Posts: 4505
Joined: Aug 2009

Welcome , sorry you had to find us but glad you did. I dont have your kind of cancer, but i was 34 the first time I was diagnosed. I am now 52. It is hard especially when you are young and have small children. Come here for support, knowlege and understanding. Hugs

MAJW
Posts: 2515
Joined: May 2009

You have so much on your plate....so glad you found us, but not the reason....I know you're scared...we're all scared when we hear the word cancer...I'll share a story with you...my sister in law was diagnosed with a breast sarcoma...she had a mastectomy...like you, she was told it is a very rare type of bc....she had no chemo, no radiation...and guess what? That was 23 years ago!!!!!! She has been fine ever since....she was diagnosed at age 39...

I hope that this may bring some comfort for you.....we're all different, though....please keep posting....this site is full of loving, caring, supportive women.....you can come here and ask questions, vent, whatever you need....we'll do what ever we can to help....

Big Hugs, Nancy

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

It is definitely okay and normal to be scared and cry. We've all done it (some of us many, many times), along with ranting, raving, screaming, but also laughing and smiling again. I love Nancy's story--just remember, never ever give up hope. Many of us here have defied the so-called "statistics" and "odds". You are as individual as a snowflake and not a statistic.

This is the best place I know to get advice, hear encouragement or just a shoulder to cry on. Stay with us here--I know it will help you.

Hugs, Renee

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Hi Kai and welcome to this great site. You are so young to be diagnosed and I am so sorry. I hope that Nancy's post about her young sister can help you to know that you can beat this and win!

I will be praying for you and keep posting.

Hugs, Angie

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Absolutely it is ok to cry and be scared. I don't think I can say it better than Renee did...and Itoo love Nancy's story.

But a note about being strong for your family...you might find they surprise you if you share a little with them about how you feel. You of course, know them better than I do...but it is very possible that if you give them a chance they will be a source of strength and comfort for you. I think, at minimum, you should be letting them take you to and from treatments and allow them to cook or clean for you. Yes, there will still be times you will want to/need to be strong for them...I think that watching someone you care for go through this **** (sorry) makes them feel completely helpless. In some ways it is harder that being the one to go through it. Letting them 'do' for you gives them a way to combat that helpless feeling.

There is a great book called Breast Cancer for Husbands. It has some great info for caregivers and those watching us go through this.

Please come back and let us know how you are doing, we really want to know and help.

Hugs,

Linda

heaven1021
Posts: 7
Joined: Mar 2012

Welcome Kai. It's ok to be afraid. I too was diagnosed with a rare type of tumor called a phyllode and they really don't know that much about it. As time goes on you will get stronger and stronger, you too will soon say "I am a Warrior"

Lynn Smith
Posts: 1265
Joined: Mar 2011

With a rare type of BC I'm sure you are upset.Always want it to be simpler but when it's rare there is a bigger fear.But today they know so much more.There is a high incidence of breast cancer in my famly.My mom at 20(lived 60 years) niece at 30(7 year survivor) me at 62(3 year survivor) and just a couple weeks ago my sister was dx the same age I was(62).She's seeing her plastic surgeon today and waiting for a call from her oncologist.She's been waiting almost 2 weeks to hear from the oncologist.Alot of frustration now for her and the family.It's the waiting and wondering.

My dx was common.DCIS(duct carcinoma in situ).Non invasive.With my mom living so long I wondered if I had the same type she had.I never talked about her cancer with her.She was dx before I was born and I grew up with her having the disease.Being young I wondered what in the world???? I saw the scaring and no breast.Still we never talked about it. All I knew was cancer. Of course I was born 7 years later. It was just normal for me.In all those years growing up I never heard her be bitter about it.She just took it in stride.Never got upset.

You're young but today people are lving long lives with BC.Everytime I check the news there are new treatments and new ideas on how to treat it.It amazes me but makes me happy because I know I COULD get another type of cancer later and want to know things are moving forward for this disease.To think my mom lived 60 years is just a miracle and a blessing.I would hope that for you and it's possible.

Wish you the best and want nothing but good news for you. Please keep in contact with us.There are so many on here that will be of help.Like a few said their czncer is rare also.

Lynn Smith

Lynn Smith
Posts: 1265
Joined: Mar 2011

Something to add.It has to be hard not having your parents at such the young age of 29.They were young when they passed away.And you have younger sisters which makes it hard. My dad passed when I was 36 and my mom passed when I was 53. WIsh my dad had lived longer but my mom had a good long life.

Thinking of you and your children.

Lynn Smith

Lynn Smith
Posts: 1265
Joined: Mar 2011

Something to add.It has to be hard not having your parents at the young age of 29.They were young when they passed away.And you have younger sisters which makes it hard. My dad passed when I was 36 and my mom passed when I was 53. WIsh my dad had lived longer but my mom had a good long life.

Thinking of you and your children.

Lynn Smith

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Hello sweet sister and welcome! So sorry you're going through this, especially at such young age. I was dx at 32 so I can relate. You're not alone. We are here for you, always.

Like other sisters mentioned above, everyone is different. I know it's hard not to panic when we hear the c word, but science has improved a lot compared to many years ago. Please know you'll be OK and keep believing it by trying to stay positive. You can overcome this.

I took chemo, rads, did lumpectomy and now on tamoxifen for 5 years. I can tell you from my experience that this is a process: from the time of the dx to the "end" of treatment, but it does get better.

I hope you keep posting, because we care to know how you're doing. Plus the ladies here are amazing! I got a lot of support and I couldn't have found a better place. Glad you found us!

Hang in there!! You'll do great.

XOXO

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

to the place where no one really wants to join, but once they do they get so much support they are glad they came. I am a older than you. There are however many younger ones here. Hang in here and you will find out many things that you need to know.

corinnajune's picture
corinnajune
Posts: 2
Joined: Aug 2012

I'm sorry you are going through this, it is definitely ok to be scared or cry or whatever it is you need to do.

I'm new on this discussion board, but I was diagnosed around a year ago with a rare scary cancer. Actually I found my lump in mid-August 2011 and it took 2 months/ multiple biopsies/ and even sending a tissue sample to Harvard (which stumped them- they kept my tissue for "academic purposes") before I finally got somewhat of a diagnosis. I had "locally advanced triple negative metaplastic carcinoma with squamous differentiation", whatever that means. No one ever told me what "stage" I was in, but by the "locally advanced" part of the diagnosis, I know it was stage II or III. There was a funky looking lymph node, but after removal/biopsy there was no cancer in any of the ones they removed.

I've been through 5 and a half months of chemo, a modified radical mastectomy, and 7 weeks of daily 40-minute radiation treatments. It's not a lot of fun, but you can get through this. I know the rare diagnosis makes an already terrifying thing even scarier, but if you you find even one thing that makes you happy and keeps your spirits up it will help so much. I am 38 and don't have any children, so I found solace in my friends, my family, my pets, and my own warped sense of humor. I developed a habit of wearing weird/cute hats during chemo, I posted stupid things on my blogs, and generally tried to find fun where I could.

It's hard, I know, with reality and bills and worries staring you in your face, but you can only worry so much before it brings you down. At some point you just have to have faith that everything will be ok one way or another.

I'm sorry, I am rambling and don't think I am very helpful, I haven't slept and drank coffee so I'm a little loopy... I'll shut up now!

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