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Rare breast cancer - anyone else?

Just_Lisa
Posts: 16
Joined: Nov 2011

I found a cyst on my right breast end of Sept. and I had an ultrasound done which turned out to be a comlex cyst, which was biopsied. On October 6th I was diagnosed with Invasive Metaplastic Carcinoma - adenosquamous type grade 3. Since then I have had a mammo and an MRI which revealed 2 masses <2 cm and another small mass which they believe is same. According to my onocologist it's .115% of breast cancers and she hasn't seen it before. I am being sent to another facility for a second opinion, but they haven't seen it before either. So I guess I just became a case study :). I am just looking for someone that has or has had this type of breast cancer that could share their treatment or outcome. I am only 28... yes 28 not a typo with a 3 and 6 year old. So needless to say i m a little scared... Lisa

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I don't know a thing about metaplastic carcinoma, but I did find a link for you. Just wanted to say that I was only 33 when diagnosed with Stage 3A IDC, 4 nodes, large tumor and I am still here 24 years later. I am 58 now and my silver canniversary is next year! So don't give up. Find the best docs you can, be as compliant as possible and then fight on. Hugs and prayers.

Here's the link:

Metaplastic Carcinoma

MAJW
Posts: 2515
Joined: May 2009

About this type of breast cancer....But I do know how terrified you must be....trust me, we've all walked this awful path...each of our different types and there are many different types are as unique as we are....
As Cynthia, said, find the BEST care available.....Cynthia knows her "stuff!"
This board is full of wonderful, caring, knowledgeable, supportive women! PLEASE continue to come here...vent, rant, rage or with a question...we'll try our best to help...because we truly care...We "get it" .....

My best to you...
Hugs, Nancy

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Lisa, I am sorry that you even have bc at all. You are so young, just so young.

I don't know anything about your type of bc, and, I apologize for that.

I will be praying for you and welcome to the club no one wants to join.

Hugs, Lex

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Lisa,

There is a site on the web where you can make inquiries. It is part of the Johns Hopkins Breast Center: It is a service provided by that facility. They often consults, oncologist, radiation oncologist, nurses, surgeons and experts in their field regarding breast cancer. Perhaps they can help direct you with this rare form of breast cancer.

Best wishes,

Doris

http://www.hopkinsbreastcenter.org/services/ask_expert/metastatic_breast_cancer/

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I don't know anything about your rare cancer either, but, sending hugs and prayers to you.

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Lisa,
I don't have any information to offer, just a hug and a prayer. Let us know where you are near and someone may have advise on what medical facility to check out.

Cindy

gami43
Posts: 281
Joined: Jul 2011

Lisa, welcome to our site but sorry for the reason. You will
find many smart, wise, caring and courageous pink sisters
here to support you on this journey. My breast tumor was
metaplastic also. It's scary isn't it? Please PM me if you
would like to discuss further. I think you will feel better
after your doc gives you a treatment plan; that's when you go
to work! I wish you the best.

Luv & hugs, Teresa

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Just want to tell you that we are here for you, day and night for support. Also sending cyber hugs and prayers.

Megan

Just_Lisa
Posts: 16
Joined: Nov 2011

There are so many survivors out there that give newly diagnosed women such as myself hope by just telling their story and for that I thank you. In my particular case I spoke with my onocologist and she has been getting opinions from several other cancer centers (with my permission :)) to figure out what the best treatment plan for me would be. So far its looking like aggressive chemo and hopefuly a lumpectomy. I am confident that I will conquer this obstacle like so many of you have. <3

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

I was dx'd with triple neg IBC (also rare) in Aug of 2010. I completed aggressive chemo (6 rounds of TAC chemo), a bilateral, and aggressive rads (twice a day). I also have children, not as young as yours...mine were 9 and 14 at dx. I took a year off work so that my focus could be my family and fighting the beast.

I share this to help you know that although it is difficult, you can get through this. And we're here to help. When you have questions or need to vent, or whatever, please post. Even though your dx is rare, you'll find there is someone who has 'been there done that' when it comes to side effects, surgical advice, advice about cancer and kids, etc.

My advice right now, is start accepting help. Your friends and family will want to help you through this, but may not know exactly what to do. When they offer help, give them specific tasks...would you run to the store for me? can you watch the kids for a couple of hours? how do you feel about cleaning bathrooms, doing laundry? I think you will find that it will make you stronger, especially emotionally and spiritually, to accept the help when it's offered.

Also, find out what services are offered at your medical center. Dietician, social services, etc. Then take advantage of those additional services.

Hugs,

Linda

Texasgirl10's picture
Texasgirl10
Posts: 668
Joined: Nov 2010

Hi, I just want to say while I am terribly sorry that you had to join the pink sisterhood , I am very glad you found this site. I don't know anything about the beast that has attacked you, but I like Linda , also have Inflammatory Breast Cancer, which is also rare & very aggressive. I received the phone call on Nov 17 & was told in person 2 days before Thanksgiving last year. I'm telling you this because while the treatment is tough, I want you to know that you can do this & I promise you that all of your pink sisters will be right there with you.

Linda is so very right when she says accept the help that others offer. That has & still is a problem for me because I seem to think that I'm superwoman & can do all things lol, but I assure you it's not a good thing. Please get lots of rest, drink lots of water & eat even if you don't feel like it. Remember that you can do this & we are all here with you.

I will keep you & your family in my prayers.

Hugs & God Bless,

Dawne

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Going for a 2nd opinion can always be helpful. Many of us on here have for various reasons. I am so very sorry that you have this rare form of bc. Just know that we will all be praying for you and please keep posting.

Hugs, Leeza

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Lisa, I am sending you the biggest hug that I can thru cyber space. I am so sorry sweetie that this happened to you.

Never, ever give up hope.

Praying,

Sue :)

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Lisa, there is always hope! That sounds great that your doctors are speaking with other oncologist's about the best treatment plan for you. You've got a good doctor!

You will conquer this and you will win! You've got all of us cheering you on and supporting you!

Hugs, Debby

jworkman's picture
jworkman
Posts: 10
Joined: Apr 2010

Hey Lisa,
My name's Jamie & I was diagnosed with metaplastic carcinoma at just 21. Yep .. 21. My cancer was so aggressive & when it was removed it was the size of a small grapefruit. My doctors had never seen it either. I didn't have insurance or any clue about any kind of cancer. I've never had anyone in my family that's had breast cancer either. So I totally understand how scared you must be! I don't have any children, so I can't relate on that, but I do know how scary it is to be diagnosed with something that they have no clue how to treat or how aggressive it can be!
I had chemo first and it didn't shrink my tumor at all .. So we went ahead and decided on surgery. I had a masectomy but left the muscle. I then went on to have radiation, because of how aggressive my cancer was and how young I was they decided to have me do radiation too. I completed that (which wasn
t as bad as I had thought it would be) and got on a drug trial. I was on that for 6 months & did really well with it. I recently, in August, had a reccurrence in the same side, almost same spot as the first tumor. They gave me chemo again but it didn't help this time either. So I had surgery about 8 weeks ago to have it removed. They also took my muscle (which was where it was growing from) and used the muscle from my back and put it in my chest. I had to have a skin graft taken from my leg to replace the skin they took from my chest.
I'm feeling pretty good now. Almost completely healed. The oncologist says they got it all and I won't have to have any more chemo or radiation as long as my scans are clear.
.. I know this is all VERY scary & it can be overwhelming. Please just don't get discouarged. I know it's even harder when you're young and nobody else your age understands. PLEASE do not hesitate to email me or message me or anything. I've learned SO much in these past 2 years & to be 100% honest .. I wouldn't change it if I could. It's brought my family so close and it's showed me how much support I actually have. It's made me want to give back. I'm not going to act like it's all inspirational and not a challenge. It's hard. And you're going to question yourself A LOT. But it was all about strength for me.
Have you had a genetic test yet? .. Do you know if you're triple negative?

Just_Lisa
Posts: 16
Joined: Nov 2011

I did get the genetic testing which came back negative. That was the hardest part of the waiting game - best relief ever! I am so sorry to hear about your reccurrence. Going through it once has to be tough enough, just hope you don't have to go through it again. I have a grade 3 so the doctors said it has a high chance of local reccurrence and mestasis, so i already had a complete bone scan that also came back negative (another relief). I think i have already mentally prepared myself for the journey ahead (as much as anyone can) and getting over the "superwoman" complex i also have :). The people around me won't allow it. Everyone being honest about whats going to happen really helps with the mental preparation. Such as you are going to lose your hair, it's not going to be easy, ect.. thank you all for that. HUGS Lisa

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

oops sorry the thing posted triple time

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

:)

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

at such a young age. But how wonderful that on this site you have found another young woman who has been through a similar dx and can give you the info and support you need.
Hugs
Dee

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Jworkman and Lisa, you are so very young to be dealing with this. Unfortunately, bc has no age limit. Stay strong, stay focused and come here for support.

Best of luck and praying for you two,

Noel

VickiSam's picture
VickiSam
Posts: 8499
Joined: Aug 2009

find our site, but happy on the other hand, because -- we can lend our support, help, experiences -- love and prayers.

If possible .. can you locate a breast cancer specialist?

Jworkman offer up some excellent information,,, Thank you.

Vicki sam

Just_Lisa
Posts: 16
Joined: Nov 2011

My onocologist is wonderful and she is speaking with many different specialists, primarily Sloan Kettering. My original treatment plan was chemo then lumpectomy, but after all the different opinions they now highly recommend a masectomy. Not just the breast with cancer but BOTH and then 14 months of chemo after. Scary thought and I definately would prefer a lumpectomy, but even when we were discussing just doing the lumpectomy I didn't feel like it was the right answer. Grade 3 high activity levels - i had a feeling they would change their minds. Still my choice but deep down i know the mas. is the way to go. And yes to Jworkman and her info, the thought never occured to me that the chemo might not work knowing that just that makes the mas. decision a bit easier.

Lisa <3

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Yes, it is your choice and I know you will make the right choice for you Lisa. It is wonderful that your doctor went above and beyond in seeking the opinions of other specialists. I wish you the best!

♥ Kristin ♥

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Lisa, is your surgery scheduled or are you doing chemo first? Sending hugs and prayers to you!

Lex

shelbyhome
Posts: 145
Joined: Feb 2010

Lisa first I have to say that I am so sorry that you have to be on here and second at such a very young age but age doesn't stop this horrible thing that has attacked our bodies.
I haven't heard of your cancer, I hope that you get all your answers.
Be tough and fight like a girl and always remember that we are all here when you need anything!
Hugs :)
Robbin

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Hi Lisa -- I'm sorry you are here too. UGH! I wish this can go away for all of us. I never heard of your type of c, but trust your Doctors recommendation- which you are- and walk into it believing this will work for you and you will recover fine. I was dx at 32 so not too far from your age, but I think this is difficult and overwhelming at all ages. Where do you live? You mentioned Sloan so I thought you were in the NY area. If you are, you can pm me - maybe we can meet one day. I wish you nothing but the very best. And my prayers are with you.

Please keep us posted.

Hugs

SNEADS999
Posts: 1
Joined: Feb 2013

I just joined this website.  I saw that you had this rare cancer.  I also have it and I was told I'm the 36th in the world to have it.  If you still read this website I have some questions for you about possible causes.   There isn't much reasarch on this type of cancer.     I was treated at a major medical center and I'm the first they've seen of this type of cancer.  

Do you have any history of possibly drinking contaminated drinking water?   I have a 3 year history drinking water that had TCE, PCE, and Benzene in the water a long time ago.  

I see that you entered this comment back in Nov 2011.  I had a biopsy back in 2010 but the Pathologist missed it and said it was benign.  I had a second biopsy in 2012 and they missed it a second time.  It wasn't until the surgeon asked for a second opinion that it was propery diagnosed.     Now after two surgeries and 32 radiation treatments I'm looking for answers.

I would like to know what part of the country you live in.   

 

 

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