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Sarcoma of breast Rare lessthen 1% anyone else?

PattyB5533
Posts: 24
Joined: May 2008

Newly dx with carcinosarcoma or sarcoma of breast. was told less then 1 % of breast Ca. anyone else? Treat as a sarcoma or as a breast Ca. I want to be aggressive since they tell me survival rate is only 40%, Of the studies I've found 5-7 years were tops. I can't accept that, I know there has to be survivors out there, I want to know what your treatments were. I'm 41 and have 2 boys ages 12 and 13, I,m gonna fight but HOW? I see an oncologist today, and have my list of questions ready. Patty

Maureen3
Posts: 11
Joined: Mar 2004

Patty,

I hope you are still checking back to your post from May. I have angiosarcoma in my breast tissue but it is from radiation I received in 2003 to treat breast cancer. I was diagnosed at 44 with stage 3 breast cancer, had mastectomy, chemo and massive amounts of radiation. (tumor was very large, they gave me a 50-50 shot at survivorship with treatment) This past January I discovered a series of bumps on the radiated tissue, which turned out to be angiosarcomas. My oncologist believes it is a direct result of radiation. The expectation is that they will become angiocarcinomas- the question is when. I'm not excited about surgery (the normal treatment) because it would involve removing most of my chest wall. ugh. I tried Avastin for a few weeks but without any effect. I'm kind of at a standstill while my oncologist searches for options and other best practices. I wish I could be more help. I'd be grateful to learn what you've done since May and if the treatment your oncologist selected has been helpful. Either way, we are both too young and have too much left to do to let this get the better of us. I agree with your determination to be aggressive! It's tough, but you have those boys who are going to need you. My children (3) were 17,15 and 13 when I was diagnosed. We got through it and this May my youngest daughter graduated from high school, something I wasnt sure I would get to see. Please write back and let me know how you are doing.

living well
Posts: 2
Joined: Dec 2008

I sent this comment once, but it didn't show up so if you get it twice, forgive me.... I hope you still check this board. I was wondering how your treatments went, what you did and how you are? I have had 6 surgeries and just got a 1cm margin; however, the doctors say we still need a larger clear margin. The are now wanting me take radiation but since radiation from 15 years ago is what caused this cancer that isn't something I want to do. You can email me at evasuerash@hotmail.com if you want to but I will check back here as well. Thank you and God Bless

bevans1942
Posts: 14
Joined: Sep 2010

Dear Eva, I am glad to see that you are still surviving. We had corresponded a few years back. I will have reached my 5 yrs in April of 2011. My cancer started returning in Sept, 2010 and I have had 2 angiosarcomas removed since then. One was on the scar margins and the last one was in the chest wall. I am noiw going back to Moffitt for treatment. My treatment plan is now Chemo, radiation, and rebuild the chest wall. I would like to wish you well. Let me hear from you bevans1942@gmail.com

survivor9yrs
Posts: 57
Joined: Oct 2009

i have just been diagnosed with AS. this is a rare cancer. mine caused by radiation in 2000. doing surgery first. have had mastectomy, scans(all clear) and now will start chemo. taxotere & gemcitabine.

Carolynlg
Posts: 3
Joined: Nov 2009

Well, it seems like I'm finding a group of you gals. I've been looking for weeks, apparently in all the wrong places. I'm sorry that we are in this elite group but at least we are together and can share information and experiences.

I was just diagnosed with an angiosarcoma of the breast due to radiation when I had bi-lateral breast cancer 8 years ago. At that time I had 8 chemo's and 28 radiations plus a bit of surgery on the axillas. I had some complications but really not too bad. All in all I came through it rather peachy keen I would say. Until now that is.

Like the rest of you this DX has thrown me for a loop. Anything I read on the internet is totally discouraging. It seems that is what is said there we will all be dead within 5 years. I for one don't like those odds and intend to fight howver I can to be an exception to their statistics.

I go in next week to have a bi-lateral mastectomy and have my lymphnodes checked out too. After that I don't really know what is next. Can some of you who are ahead of me help me with this. What is being done for you? What problems are you having? How will you know if it has spread anywhere else in your body?

I know I am asking harsh and very personal questions but at a time like this I don't think we have time for company mannors. We need to be polite but very real with one another. Please, I hope you feel as I do and will write back soon. As I said my surgery is next week so I don't have a lot of time to bone up on all the pro's and con's of this thing.

God Bless any one who answeres me and may he also bless those who might have something to add but just can't face one more message board or one more question. His Grace is everlasting and his love is forever.

Carolyn

BELIEVEx3
Posts: 24
Joined: May 2009

Dear friend,
I have survived Angiosarcoma of the breast post radiation. I had bilateral mastectomies 3 years ago and I would love to talk to you if you wish. I have searched forever to talk to someone else who has survived. My story is a bit different. I was blessed with low-grade, but recently found to have a very rare cancer gene. But I am doing great!!But been to *^R%&^& and back.PS I love not having breasts!
I will check in to answer you if you respond. What state do you live in???
I still believe!!

survivor9yrs
Posts: 57
Joined: Oct 2009

believex3,
how long have you been a survivor of as? mine was high grade. i too hope to be a survivor. did you do chemo? i do know of another who is a 4yr survivor and another from a forum who is a 6yr survivor.
survivor 9yrs

bevans1942
Posts: 14
Joined: Sep 2010

Hello there, I am one of those 5 yr survivors, I am now back fighting the battle again. Do not give up. My next battle plan is adriamycin+zenicard to protect the heart, radiation to the site again and then total reconstruction of the Chest Wall. My Dr's told me that my treatment needed to be aggressive, which is what I am doing. I go to the Moffitt Cancer Center in Tampa, Fl. Good luck to you.

t123
Posts: 25
Joined: Feb 2013

I was just diagnosed with angiosarcoma of the breast. I live in clearwater fl.. I had the port put in to start chemo this Friday. 7 weeks of chemo then surgery followed by radiation and more chemo. I hope to hear from others like myself/

tito22
Posts: 1
Joined: Nov 2013

My sister was diagnosed about 14 months go and has decided to go the holistic route.  She has had a good year.  She is desperately wanting to speak with someone who has the same diagnosis.

 

Tim Morton

tmorton760@hotmail.com

San Diego, CA

(760)522-3207 (cell)

salvation
Posts: 1
Joined: Feb 2011

Last July my wife Lynda was told she had a very rare form of cancer. Osteogenic Sarcoma and it was in her breast. We have only found two other women who have had this reported since 1950. One was in Scotland and the other in Nigeria. Her body was making a bone in her breast. She has had three lumps removed and the breast. Lynda has always been one to take care of herself. Go figure... We were at Lacks Cancer Center in Grand Rapids, MI and felt very comfortable with those doctors over there. She has had two petscans and no other cancer is shown anywhere else. She is 68 years old and she took 5 doses of chemo treatment at a time in the four days in the hospital. This happened four times, every three weeks. They treated her like a child. God made her a strong woman. She never lost her appitite. She never was sick. She knows in whom her salavation rests. My heart goes out to all of you people when I read your comments. Stay positive. The doctors have said that thr reason that she has fared so well is that she is a clogger. They, both the doctors at Lacks and of U of M, said she has a body of a 40 year old. She has good legs. If you can, exercise. She is now back to clogging two nights a week. Hour + a night. My daughter made some bracelets which are gold and pink. The gold for bone cancer and the pink for breast cancer. Like I saw in another post of a fellow with a rare cancer, there probably won't be a mad rush at finding out what causes osteogenic sarcoma because of its rarity. Maybe the researchers should look at it from the angle that we all look the same dead.

bevans1942
Posts: 14
Joined: Sep 2010

Do not accept just one DR's opinion. Go to the nearnest hospital that specializes in sarcoma. Learn everthing you can about your cancer. Look for aggressive treatment. I go to the Moffitt Cancer Center in Tampa, Fla.Other places are Stanford in California, MD Anderson in Texas. There are many specialist that treat sarcoma of all kinds. Even though there are no guarantees they have helped many people. If I can be of any help let me know.

SLeigh
Posts: 4
Joined: Dec 2010

Hello-
I'm Sheron -
I have just returned from visit to Moffitt.
I was diagnosed with radiation induced angiosarcoma(low grade) - after receiving radiation 14 years ago.
I was seeing doctors here at home - had mastectomy on Nov 15 - but 6 weeks out started having brusing and swelling. My doctors just kept doing biopsies - all benign.
After 5 biopsies, I decided to contact Moffitt - felt I needed second opinion and
doctors who are familiar with this disease.
Doctors at Moffitt have told me they will study slides from my surgery and biopsies to confirm the diagnosis -
I did have CT last week - showed spot - that turned out to be a pocket of fluid left from surgery in November- what a relief.
How do you feel about Moffitt? any helpful hints?
It's been such a roller coaster - option discussions range from watch/wait/scan - to chemo - to chest wall surgery again. Right now I have no metastasis- but oncologist says he might suggest chemo as preventive. Did you have chemo? I'm trying to learn all I can - so I'll be knowledgable as I start this journey.
I'd appreciate anything you can share - things you've learned along the way.
I will be thinking of you and wishing you the best in your treatment.

survivor9yrs
Posts: 57
Joined: Oct 2009

sheron,
so sorry to hear of your new problems. i too had secondary AS.. i am now 17mos free.. i had alot of fluid under my skin for months after my surgery. it is now gone. haven't noticed any bruising.. as i understand, it is best to have a surgical biopsy. good you have gotten a second opinion.. i think i would do the chemo. protect the rest of your body. i had gemzar and taxotere..it's a nasty cancer and so far, i have been doing good. i do hope they can determine the cause of your bruising soon and i pray it isn't a recurrence. good luck
survivor9yrs

believe4ever
Posts: 2
Joined: Jul 2011

i was just reading your comment and the kind of cancer you have sounds exactly what sister have.my sister was diagnosed with breast cancer a year ago and right after her surgery, she started felling bumps on her shoulder, in the back of her neck and legs. she went through different chemo treatments and a few days ago, she got a second opinion from different doctor and he thinks that she has sarcoma. she might be starting taoxtere in a few days. so I was wondering which chemo do you think was the most effective for you? and which clinic do you go to?
I pry Gods gives everyone wellness and happiness.

survivor9yrs
Posts: 57
Joined: Oct 2009

i had taxotere and gemzar.. they were given to me as adjuvant therapy, since my mastectomy removed all the sarcoma and it had not metastized. breast sarcoma after radiation, starts as bruising. then it will look like a blood blister. then it just keeps growing. i go to our local oncologist. good luck to your sister
survivor9yrs

bevans1942
Posts: 14
Joined: Sep 2010

I am a long term patient at Moffitt. I am a patient of Dr Conley and Dr Gonzales and
I love and trust them both. I have had a chest wall reconstruction, Chemo, I am now taking
Votrient. Votrient is a chemo pill I take at home. My CT showed that I had new cancer nodgles after my surgery. Dr Conley put me on Votrient a Chemo pill that I take at home. I
Have taken this drug for about a month and new CT Scan showed new cancer shrinking. I am thrilled. I am thankful to be a Moffitt Cancer survivor. If I had continued with my Drs. at home. I would be dead now. I live in Tallahassee and the Drs there all said that they could not do anymore for me. Good luck to you. I have been battleing Angiosarcoma for 6 years now. My sarcoma was caused by radiation.

mikeey
Posts: 2
Joined: Mar 2012

Just an update...
Votrient(pazopanib) was approved by the FDA a few days ago to treat soft tissue sarcomas.
To my regret I am familiar with Votrient as it was used for the last two years for metastatic kidney cancer. It is taken as 400mg twice daily. Compared to other TKI(tyrosine kinase inhibitors)it has much more tolerable side effects(Sutent, Afinitor). I live outside the USA and purchased the medication from www.IsraMeds.com at about half the US price(I do not have insurance and calculated I saved about 100K by doign so). Now trying to purchase Inlyta 5mg 60 tabs but as it is only approved in the US and cost 11,000 a month!!! that seems to be very hard doing...
Would appreciate any leads on how to purchase Inlyta...
Mike

t123
Posts: 25
Joined: Feb 2013

I hope you receivetl this email. I was diagnosed last February and have been seeing Dr. Jooma in the Fl Cancer Specialists over here in Clearwater FL. He consulted with Moffitt at the beginning of my treatment. How are you doing? Since we live so close to each other, i was hoping to ask about your treatment. Please reply as my angiosarcoma has spread to the liver. Cathy in fl

Pat316
Posts: 2
Joined: May 2012

Hi, I have primary breast sarcoma. I am so upset it is hard to stop crying. They want to remove my breast for a tumor that is 1.6cm.m does anyone know anyone who has this?

t123
Posts: 25
Joined: Feb 2013

I too was dx with this amonth ago. Instead of crying I became mad. Mad at this cancer. I'm sure I will cry but right now I am going to do what Dr Allen Dr. Jooma from Fl cancer speclt & Dr Gonzales from Moffit tell me to do. I live in the Tampa Bay area & we have some good medical resources. Good luck to you. There appears to be hope out there. Don't give up.

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