metaplastic spindle cell carcinoma breast

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metaplastic spindle cell carcinoma breast

by barna on Wed Mar 26, 2008 12:00 AM

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   Has anyone been diagnosed with metaplastic spindle cell carcinoma of the breast and had no further mets? Has anyone found a treatment site with an increased rate of survival after treatment? Is there anyone out there that has survived ten or twenty years after diagnosis?

    I was recently diagnosed with this and have been unable to find positive statistics and would love to hear from anyone who has some.

RE: metaplastic spindle cell carcinoma breast

by joeyr on Fri May 23, 2008 12:00 AM

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On 3/26/2008 barna wrote:

   Has anyone been diagnosed with metaplastic spindle cell carcinoma of the breast and had no further mets? Has anyone found a treatment site with an increased rate of survival after treatment? Is there anyone out there that has survived ten or twenty years after diagnosis?

    I was recently diagnosed with this and have been unable to find positive statistics and would love to hear from anyone who has some.


hi there

yes, i was diagnosed with metaplastic carcinoma of the breast in sept 2006.  i completed treatment in may 2007.  so far,  all ok, doing my three monthly check ups.  also am lookin for info on survival stats,  but impossible to locate.  pls let me know, if you have had any progress.

good luck with your treatment!

RE: metaplastic spindle cell carcinoma breast

by jean60 on Tue Jun 03, 2008 12:00 AM

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I hear you and know you are worried and cannot get a lot of information about Spindle Cell.  I had a 3.2 cm removed in Jan. 2003 and I am doing wonderfully.  It has now been over 5 yrs.  I have done as much reading as I could find and I've concluded that this type of cancer {If you were having cancer} is the least invasive.  Unfortunately it is very rare and any studies on it are few and mostly incomplete.  You will be fine.  Just keep thinking positively and you will live a LONG time.

 

Jean

RE: metaplastic spindle cell carcinoma breast

by jean60 on Tue Jun 03, 2008 12:00 AM

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I meant to tell you two that I had 5 sessions of chemo then 32 sessions of radiation.  I feel very good!!

RE: metaplastic spindle cell carcinoma breast

by jean60 on Tue Jun 03, 2008 12:00 AM

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Good luck and God Bless

RE: metaplastic spindle cell carcinoma breast

by barna on Wed Jun 04, 2008 12:00 AM

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On 6/3/2008 jean60 wrote:

I hear you and know you are worried and cannot get a lot of information about Spindle Cell.  I had a 3.2 cm removed in Jan. 2003 and I am doing wonderfully.  It has now been over 5 yrs.  I have done as much reading as I could find and I've concluded that this type of cancer {If you were having cancer} is the least invasive.  Unfortunately it is very rare and any studies on it are few and mostly incomplete.  You will be fine.  Just keep thinking positively and you will live a LONG time.

 

Jean

Dear Jean, I am extremely happy to hear from someone else who has this form of cancer. The original group of medical and radiation oncologists only recommended radiation. Then I went for a second opinion and chemo was also recommended. My mass was removed in February 1.3 cm with clear margins, triple negative. The sentinel node bx. was done a month ago and was negative. Due to having only one kidney and an inability to tolerate the decadron without having arrythmias, chemo hasn't started and I'm not so sure that it will. Adriamycin, cytoxin and taxol were recommended . Since I still haven't started any treatment including radiation (I had a lumpectomy), I'm beginning to think I should just get radiation and hope for the best. What chemo agents did you get and how long after surgery did you start chemo? Did you have a mastectomy or a lumpectomy? Did you also get radiation? Most of the studies I've read suggest that chemo isn't proven to work for this cancer which really doesn't make me want to risk the possible side effects. And naturally I'm terrified to make the wrong desicion. Any input from somebody who went through this is greatly appreciated  and goes a long way in keeping my spirits up. Thanks so much for responding to my oroginal message and giving me some hope. I'd love to hear from you again. 

  Ruth

 

RE: metaplastic spindle cell carcinoma breast

by Wirly_Girl on Thu Jun 05, 2008 12:00 AM

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Hi, will be in remission 3 years come this August and am doing fine but for all the side effects left by the treatment.  I'm still afraid each time my appointment comes due.  It is escecially frightening becasue of the its rariety...I had 1 year of Chemo (two different kinds, one I know was Taxol)Both breasts were removed even tho the cancer was only in the left one. I elected to have both removed as I was large breasted and did not want any reconstruction or to wear a prosthesis.  I wear cute padded camisoles, which are quite comfortable and provide some shape.  I only mention this because I learned that "I" am a lot more than my breasts and that my husand , family and friends love and treat me no different than before-Also saved $500 dollars a year on bras  LOL.....Ok, now back to the subject. All we can do is what our Drs advise, live healthy without making your self miserable, and know that each sec, each min, each hour of every day, week, and year-New treatments and becoming available. My heart goes out to all of you and I know that I am in good company knowing that there are others out there just like me who are sending out our love and energy and prayers for all of us.........Much Love carol

 

 

 

RE: metaplastic spindle cell carcinoma breast

by Chrissie_Lou on Fri Jul 18, 2008 12:00 AM

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Carol,

Glad to read that you are doing fine.  I've finished round 6 of chemo and am now facing surgery.  I am also large breasted and considering removing both breasts, without reconstruction.  The thought of no bras is actually kind of nice after years of underwires!  Your positive response, along with your husbands and friends, makes me feel more comfortable with this decision.  Thanks for sharing!


Chris

RE: metaplastic spindle cell carcinoma breast

by Wirly_Girl on Fri Jul 18, 2008 12:00 AM

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On 7/18/2008 Chrissie Lou wrote:

Carol,

Glad to read that you are doing fine.  I've finished round 6 of chemo and am now facing surgery.  I am also large breasted and considering removing both breasts, without reconstruction.  The thought of no bras is actually kind of nice after years of underwires!  Your positive response, along with your husbands and friends, makes me feel more comfortable with this decision.  Thanks for sharing!


Chris


Dear Chris,  I think you are making the right decision-and I sure wish you well. I will keep you in my thoughts with positive images.  Just think how much money we will be saving on those Bras-not to mention all those metal wires.  And, in case we ever should be so inclined-We can go out side and water the lawn with no blouce or shirt-just the men folk.  Not that I ever did but I could if I wanted to...I am surprised to hear that you received your chemo BEFORE your surgery?  New treatments and meds are arriving practially daily.    Hold on to your good thoughts and you WILL survive.        ~carol

RE: metaplastic spindle cell carcinoma breast

by Iodine on Thu Nov 20, 2008 12:00 AM

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I was diagnosed with spindle cell metaplastic carcinoma in July of 2003......I had dose dense treatments of a/c (every two weeks instead of 3 weeks) and taxol.....and then 6 weeks of radiation.   (a/c were 4 treatments, taxol 4 treatments).........and so far so good.   I worry every day about recurrence but so far I am in remission.   I would be interested to know of any hospitals or doctors who specialize in this form.  I am also triple negative.   Every day is a gift..............

Carol

 

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