CancerCompass message board discussion started by barna on 3/26/2008 http://www.cancercompass.com/message-board/message/all,22340,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/    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. barna Wed, 26 Mar 2008 00:00:00 GMT  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 thereyes, 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! joey.r Fri, 23 May 2008 00:00:00 GMT 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 jean60 Tue, 03 Jun 2008 00:00:00 GMT I meant to tell you two that I had 5 sessions of chemo then 32 sessions of radiation.  I feel very good!! jean60 Tue, 03 Jun 2008 00:00:00 GMT Good luck and God Bless jean60 Tue, 03 Jun 2008 00:00:00 GMT  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. JeanDear 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   barna Wed, 04 Jun 2008 00:00:00 GMT 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    Wirly Girl Thu, 05 Jun 2008 00:00:00 GMT 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 Chrissie Lou Fri, 18 Jul 2008 00:00:00 GMT  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 Wirly Girl Fri, 18 Jul 2008 00:00:00 GMT