metaplastic spindle cell carcinoma breast

I had a lumpectomy in July 2003 for spindle cell, triple negative.....received 8 treatments of a/c, taxol dose dense (every two weeks) and 6 weeks of radiation.   So far my check ups have been okay except I still have soreness near scar tissue and worry about recurrence.  I'm grateful for each day and happy to just have turned 67...........hope to make it to 84!

Carol

 

I was diagnosed with SCC in 2004 and did 4 rounds of adriamycin.  I was allergic to cytoxin or would have done that too.  Also did 6 weeks of radiation.  All that following a lumpectomy.  Spring of 2009 will be 5 years and I have remained clear on all tests. 

It is scary to get diagnosed with a rare cancer, but you can be okay.  I would do it all again and have few long term effects from the treatment.  I live a healthy, active life - and having had cancer helps me appreciate it more.

Thank you so much for taking the time to reply to my message---it's comforting to know there are others out there with this that are O.K. I was at radiation when you replied--I have 8 more to go. I still have  peripheral neuropathy  from the taxol treatments that followed adriamycin and cytoxen but am very hopeful that I will remain cancer free for a long, long time. Like you I appreciate each day. Best of luck to you and thanks again!

 

On 6/4/2008 barna wrote:

 

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

 

 

Hi I live in Townsville Queensland Australia and have just had a lump cut out from my right side top rib just below my nipple, I am male aged 51 and was thought I had breast cancer as it was on the breast tissue line that runs down to your grion.  I have had a small 5 cent piece size lump on my top rib area since i had a couple of broken ribs back in my rugby league days in 1986, have never worried about it, thought it was part of my ribs.  In December 2008 I began having a dull ache under my right arm and was being treated by doctors as soft tissue damage with anti inflam. tablets.  In January I noticed a lump under my right arm the pain was getting worse and would sometimes wake me up at night.  I rushed to the doctor who sent me for an xray.  Xray showed nothing kept me on anti inflam.  Pain kept getting worse every time i went to bed the pain would start (felt like being stung by bees under my right arm) I went back to Doctor in February and said i was feeling worse.  Sent for ultra sound and then received a letter to come in at once as lump under arm suspect malignant.  Bi opsy (much pain) showed nothing.  Side scan showed more lynph nodes inflamed under arm.  Operated on Friday 6th March to remove lump from under breast (which has now grown to size of golf ball and turned red) and 21 Lynph nodes removed from under right arm.  Diagonosed on Wednesday 11th March as being a Spindle Cell Melanoma with only one of the 21 Lynph Nodes removed malignant.  Surgeon (Jason Boldery) very good, advised very sure he has removed all of the Melanoma and now have to go and have Radium for 4 to 6 weeks to make sure of all micro cells cannot come back.  Jason advised that Chemo does not work on this type of cancer.  I have to wait 4 weeks after op to start radium.  I will keep you informed how treatment is progressing.

Also advised that these Spindal cell are regional only stay in the one area but the danger with them is they can go deep and are terminal if not treated early.  Very rare on Breast area normally found at base of skull and neck area.

Carol,

 I see you have not posted in some time.  My mom has metaplastic spindle cell carcinoma, triple negative.  She has a metastasis which was found after successful double radical mastectomy.  I really can't find much on my mom's disease.  She is being treated at MD Anderson in Houston and at this point they are a bit stumped with her progress. 

 Hope you are doing well.

 Marietta

On 8/12/2009 xmsigerson wrote:

Carol,

 I see you have not posted in some time.  My mom has metaplastic spindle cell carcinoma, triple negative.  She has a metastasis which was found after successful double radical mastectomy.  I really can't find much on my mom's disease.  She is being treated at MD Anderson in Houston and at this point they are a bit stumped with her progress. 

 Hope you are doing well.

 Marietta

Dear Marietta, It's true, this disease is hard to find info on because of it's rarity. My oncologist, located in Wash. DC with a great deal of expertise, said it is rare to have a case of this type of cancer more than once every other year, and he also told me to throw everything I've read about breast cancer out the window with this one, as most of the time it is not specific enough for metaplastic. So, now onto your mom and maybe an idea. I had a huge mass, 6.5 cm and thus a simple mastectomy of my right breast in July 2009. I am undergoing chemo now and will follow with radiation because of the size, even though all my lymph nodes were negative. My chemo was supposed to entail cytoxin (I think that's how you spell it) and taxotere but I had a massive reaction to the taxotere. I was moved to abraxane, which I understand is reserved for use in allergeic reactions OR in the case of metastsis, which is where my info might help your mom. The side effects with abraxane are very, very minimal because it is a nano-particle drug and are being easily managed by 3 days of meds (following the infusion), in my case. The first dosage gave me 2 days of very bad nerve stimulus in my legs which has been completely controlled by decadron every 12 hrs for 3 days this time around. You might talk with MD Anderson about using abraxane. I wish you and your mom the very best and will keep you in my thoughts and prayers If you have any other questions, I'm happy to try and help. Leslie A.

 

Dear Marietta there is hope. My wife is in a trial at MD Anderson. She also has metaplastic spindle cell carcinoma, triple neg. She has been there since spring and started the trial 3 months ago. She takes three drugs( all FDA approved ), Doxil/Avastan/Torsil. ( not too sure of the spelling I'm at home and she is in Houston ). She takes all three drugs one week, then the next two weeks Torsil. After her first six weeks the tumors had shrunk 35%. Last week she had her second scan and the tumors had shrunk 75-80%. The doctors are very excited. They are now talking about writing the second phase. This trial is only about 1 year old.  Tell her to check it out. 10th Floor Main building Targeted Therapy. 

God Bless and Good Luck      DD

 

I dont mean to be a negative person on this subject but mt Mother hsd spindle cell carcinoma and it was very invasive.She passed away on July 30th of this year and i am having a a very difficult time dealing with it.My faith in  the  health field( DRS. in general is null)I have found it to be very discriminitory to age of the patient.I myself work in the health field and hear such talk.Sorry..just needed to  vent.

I have just returned from MD Anderson where I was diagnosed with this!  My dr. said there were no trials for this type of triple negative breast cancer.  She recommended a taxere type, and a gemzare type...how is your wife doing now?  Is she still in the trial?  Who is her dr. at MD Anderson?

I was diagnosed with triple negative breast cancer a year ago - went through mastectomy and then FEC chemo with no taxol, etc.  I have just found a swollen lymph node on same side armpit, yes, 2 cm triple negative - but went to Md Anderson for second opinion, and they discovered pathology showed metaplastic spindle cell - very rare form of triple negative - oh boy!  So, was told latest chemo for this is a drug which is a Taxotere called Docetaxel, along with one that is a Gemcitabine called Gemzar.  Then surgery to remove lymph nodes, then six weeks of daily radiation...anyone have any thoughts/suggestions/help?