Rare breast cancer - anyone else?
. 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 Comments
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I don't know a thing about
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 Carcinoma0 -
No Idea...CypressCynthia said:I don't know a thing about
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
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, Nancy0 -
Ask an Expert part of the Johns Hopkins Breast Center
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/0 -
Lisa, I am sorry that youCypressCynthia said:I don't know a thing about
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
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, Lex0 -
Lisa, welcome to our sitemamolady said:Lisa,
I don't have any
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
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, Teresa0 -
I don't know anything aboutSIROD said:Ask an Expert part of the Johns Hopkins Breast Center
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/
I don't know anything about your rare cancer either, but, sending hugs and prayers to you.0 -
Just want to tell you thatmamolady said:Lisa,
I don't have any
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
Just want to tell you that we are here for you, day and night for support. Also sending cyber hugs and prayers.
Megan0 -
Thank you allMegan M said:Just want to tell you that
Just want to tell you that we are here for you, day and night for support. Also sending cyber hugs and prayers.
Megan
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. 
0 -
I was dx'd with triple negJust_Lisa said:Thank you all
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. </p>
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,
Linda0 -
WelcomeGabe N Abby Mom said:I was dx'd with triple neg
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
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,
Dawne0 -
Metaplastic Carcinoma
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?0 -
Going for a 2nd opinion canTexasgirl10 said:Welcome
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
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, Leeza0 -
I did get the geneticjworkman said:Metaplastic Carcinoma
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?
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 0 -
Lisa, there is always hope!Just_Lisa said:Thank you all
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. </p>
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, Debby0 -
Wow. So sorry that you have to face thisJust_Lisa said:I did get the genetic
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
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
Dee0 -
oops sorry the thing postedJust_Lisa said:I did get the genetic
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
oops sorry the thing posted triple time0 -
Just_Lisa said:
I did get the genetic
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 0 -
Lisa, I am sending you theJust_Lisa said:Thank you all
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. </p>
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 0 -
Jworkman and Lisa, you arejworkman said:Metaplastic Carcinoma
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?
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,
Noel0
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