Breast Cancer Stage4, not in breast

Has anyone out there had breast cancer that left the breast and went to other parts of the body. I felt great up until just before diagnosis. I was finally diagnosed with estrogen receptive breast cancer in my stomach and in my bones. I have had radiation and now take Femara and Arredia. I have had no surgery since the MRI shows healthy breast tissue in both breast. I was told my cancer would be chronic, not one to go into remission or be cured. But I have been in complete remission for about 9 months. I know it is only a matter of time before it rears its ugly head! The Femara causes a great deal of joint pain and fatigue. But it is working. Mu cancer was referred to as "indian file" which is why it did not show up on my yearly mammograms. I will be DI nuclear scanned again at the end of Feb. Had stomach scope and biopsy in December-all clear. Just wondering if anyone else has had this???? Shirley

Sorry to hear about your recurrence.  I had Stage I, Grade 2 ER+ breast cancer in 2001 and just opted for lumpectomy and radiation (33 treatments) but not chemotherapy.  Then, 7 yrs. later last July I was diagnosed with Stage IV peritoneal carcinomatosis (cancer nodules in the abdomen lining and omentum (fat layer in abdomen).  I was first put on Arimidex to shrink the cancer, but it didn't work, so now have been on Taxol infusions, and that seems to be working.  I also was told that it was a chronic thing, incurable but treatable.  If one kind of treatment doesn't work, they go on to another one and on and on until something starts to work.  I feel pretty good, although I have lost 25 lbs. (not that I didn't need to lose weight) and don't have the greatest appetite.  Don't be discouraged; everyone's system is different and how they react to different treatments.  You can hear horror stories about it, but that doesn't mean that you are going to have all the problems some other people have.  So far, I have not had many of the side effects that other people have on the treatment I have been getting.  Good luck!  Please let me know how things go for you.

Carolyn

 

 

 

 

 

On 1/22/2009 sgmstage4 wrote:

Has anyone out there had breast cancer that left the breast and went to other parts of the body. I felt great up until just before diagnosis. I was finally diagnosed with estrogen receptive breast cancer in my stomach and in my bones. I have had radiation and now take Femara and Arredia. I have had no surgery since the MRI shows healthy breast tissue in both breast. I was told my cancer would be chronic, not one to go into remission or be cured. But I have been in complete remission for about 9 months. I know it is only a matter of time before it rears its ugly head! The Femara causes a great deal of joint pain and fatigue. But it is working. Mu cancer was referred to as "indian file" which is why it did not show up on my yearly mammograms. I will be DI nuclear scanned again at the end of Feb. Had stomach scope and biopsy in December-all clear. Just wondering if anyone else has had this???? Shirley

 

my sister had breast cancer starting in03 ,it has metastasized in her brain and her femur and other bones as well.In 05 she had awhole head radiation and now has had cyberknife (which is a more centralized radiationon her head in sept.  her balance has been effected but not her spirit or her ability to keep on fighting  her        oncology dr is amazed that she is still around since her first diagnoses of it relocating in her head in05. i hope that you have a strong will and a strong support group also a loving family.  GOD BLESS YOU AND YOURS.

Hello, I was diagnosed with Stage IV breast cancer, estrogen/progesterone receptor positive back on Oct. 6, 2008. A pet scan showed mets to bones and lymph nodes throughout body.  I did not have any lumps or bumps..nothing..except a dry chronic cough.  I went to the Dr. for this, and an X-ray of my lungs showed some cloudiness and pleural effusion (fluid), plus slightly swollen lymph nodes under my arms.  A subsequent lymph node removal/biopsy confirmed I had cancer.  The main tumor was not found, including in breasts.  The good news from the oncologist after the pet scan was that I do not have lung cancer, and it has not spread to any of my major organs, so far.  I have been taking Arimidex every day and I receive Zometa IV infusions every other month.  I have had no side effects from the Arimidez other than good ones, and the same goes for the Zometa.  My tumor marker was 980 back in Oct.  Blood work done two weeks ago shows it has gone down to 260.  I have never had any pain anywhere, not in my bones, not anywhere, and the dry cough is gone. I am very athetic, and I work out vigourously 7 days a week.  I think this makes a difference all around for me. 

Receiving this diagnosis was brutal.  I collapsed when the surgeon called to tell me.  I was in my office, and he called to give me the bad news two days after the lymph node surgery.   I am doing the best I can to keep on going.  

The Dr. explained that although this is treatable, it is not curable.  If something else does not get me lst.,  this will kill me eventually.  I am also terrified of having it spread, which I suspect it will at some point.

I go to work everyday and smile.  I go shopping, I talk to friends, I exercise, read, enjoy my dogs, cooking, etc... but the person I used to be is gone.  Cancer is always there now, everywhere I go. 

I am lucky in that I really like my Dr.  She is a real take charge, let's get it done whatever it takes, high energy kind of person.  Also, she graduated from Harvard Medical School and did her internship at The Mayo Clinic. As an example of what she's like, when the surgeon scheduled my lst. appointment with her, I received a call saying that my Pet Scan had been scheduled for the next day, this was before I even met her, and everything has been this way since...no delays of any kind.

 Anyway, that's my story.  Maybe it will help someone else. 

Hugs & prayers to all,

Meg