Triple Negative a Second Time

How many of you ladies with tnbc a second time have had your vitamin D levels checked? 

Mine wasn't checked until  a year or so ago, and it was in the 20's I think. I was put on 5000 a day, and last check it was in the 40's, but was told to continue taking it.  I think (chemo brain) 44 might be the "normal" number, but I am not 100% on that

So sorry to hear your news Redgrldj.  I too had BMX in Sept 2010, finished chemo only. Your post answered some of the question that I can't seem to find an answer for, and that is where the cancer may recur in the body if you have had an BMX.  I think about it everyday and wonder what signs I should be looking for if it may show up elsewhere in the body.

I will say a prayer for you and thanks for sharing.

I too was recently diagnosed with a 2nd (recurrance) triple neg bc.  Orig was Dec 2002, had lumpectomy, chemo and radiation.  was no big deal about trip neg back then, now that it's back in same breast, same spot, they all said highly unlikely - they said it was calcification due to lumpectomy and radiation, so everyone was surprised when it turned out to be cancer.  fortunately very small, only .8cm, but there was also a larger 2.2 DCIS.  Had bilateral mastectomy on June 3 with reconstruction.  they found one lymphnode and it had cancer, so now I guess I need chemo.  Dr is working on what type of chemo, need to heal from surgery before this can start,  17 lymphnodes were taken in 2002 and all were negative.  No one can say if this is new cancer growth or recurrance of same cancer.

I had mastectomy and reconstuction done at Moffitt Cancer Center in Tampa because my surgeon said I should go to where they specialize in this procedure because of radiation back in 2003.  Even though my breast looked normal they said once radiated the effects never go away and all kinds of complications can occur.  I opted for bilateral because I want to minimize my chances of it coming back and since I had to have one removed why not just do both...they can reconstruct and will look better than they did before.  On the right breast (the one with cancer) they did lattisimus dorsi - they took skin and muscle from my back and transplanted to breast - this way they could remove all radiated tissue, scars etc.  on the left (healthy) breast they simply did a mastectomy and then put expanders in both sides.  I am now in the process of getting saline fills every 2 weeks until I reach my desired size...yes - I get to pick the size!  Only problem is this whole process gets put on hold when chemo starts...so looks like I will need to live with these expanders for a while. 

Newalex,  thanks for your opinion.  I have some Dr's who agree and others who say its recurrence.  I am not sure which it is...I just hope they get the chemo cocktail right this time!

hi Netty 46

sorry to hear you had a local recurrence after such a long time. Maybe its also a new primary not a recurrence ? Did you have a lumpectomy after 1st dx and any follow up scans during the past 12 yrs?

No I never had scans. Just mammos and ultra sounds for 12 years. Bloods.  So far all scan are clear now. All 6 of them. So tired of test. Will start chemo soon. The chemo I got way back was CMF.

Lynn How did it all go with the recurrence. What chemo will you be in?  I am also being seen at Moffit. I need a good surgeon who did you use there?

I was 6 &1/2 years out . diagnosed w/TNBC again. New cancer not the same one. Had B/L mastectomy & reconstruction. small tumor (< 1cm). no chem/no rad.  Now I am 1 year out!. Good Luck.

Hi,

Triple Neg Breast Cancer not in my genes diagnosed July 2010 Rt Masectomy Dr Warde Greenwich CT She was concerned it would reoccur, because chemo 1st to shrink 4.7 centimeter breast cancer tumor failed with regular FDA Protocol AC and Tax with affiliated Sloan Kettering Oncologist. Chemo had just sunburst the tumor and my surgeon had to remove fifteen lympnodes five were cancerous and in my mysectomy she scrapped and removed the cancer. Originally, I was told I had one lymphnode. In April as I was walking with my children I began to experience pain backside of arm. Xray showed tumor in right lung with nodules in both. Several MRI and hospital stays never determined how my arm continued with pain and concluded with being paralyzed. Never had lymphodema perplexed between neorologist orthpedic hospitalists and new oncologist all a guessing game because the several umteen mri's did not show cause except for enlarged nerves in armpit. Took Xeloda by mouth, fighting custody safety of my children, did not want to loose my hair, pet scan showed it had helped with the nodules. The 5 minute visits with new oncologist and sloan kettering oncologist made me believe I had 3 - 5 years left to livE. iN  JULY I met with re-known surgeon Andrew Ashikari who directed me to an oncologist who scientifically thinks out of the box. Dr. Ashikari confirmed my cancer had spread to my brachial plexis, main nerve from the neck down into the arm. He told me he had witnessed two women beat this kind of triple negative invasive carcinoma, with Dr Ambinder Yorktown Heights NY. I have received three treatments carboplatinum reduced swelling, getting pet next week. But most important my cancer number in my blood began 106 and it has dropped to 96, 10% less cancer...supposedly the no cancer range is between 30 and 40. He believes this is the marker, and that pain during chemo shows signs it is working. He is a spiritual man and I am very meditative in prayer myself. I believe with triple negative there is 4 cells growing rapidly and his goal is to kill the rapid cell growth. Aside from his reatment through Dr. Ashikari I found Dr Chiti Moorithy who freezes tumors and radiates without chemotherapy at WestchesterMedical Center. I am a single mother who has fought through Domestic Violence and Breast Cancer. My two children are the gems of my heart and as I can see my current oncologist Dr. Ambinder has recommended the carboplatinum so opposite of what each Oncologist recommended the same approach of chemo. As for next week, the pet scan will be administered and if need be I will include Dr. Moorithy treatments, I haven't been too thrilled with sloan. I plan on killing the cells, and my goal is to see my grandchildren and have this be the last time. I wish all of you well.

Pookie4  (44years old) Italian decent no history in ancestors except for 50yr sister estrogen positive lumpectomy Tamoxifen for 5years very rough, opposite of my diagnosis, a friend had the same as my sister before Sandy she had a heart attack 44yrs old passed away suddenly. (Tamoxifen?)

I had TN in the left breast, and three years later in the right.   After the first diagnosis I had a mammogram every six months for the left, but yearly for the right. My surgeon gave me a choice of a lumpectomy, and radiation or a mastectomy. If I had only known how aggressive this cancer was I would have opted for a double mastectomy, and then hopefully been done.  I was so relieved for a lighter treatment that I did not look any further.

I had tnbc in 2003 treated aggressively with TAC .and xrt.  done well until oct 2017 and have it in opposite breast.  tnbc grade 2 or 3 lymphnode positive and will need Adriamycin Cytoxan and taxol again depending on cardiotoxicity ffrom before.  bummer.

I just had a mastectomy on my left breast went with the tram flap reconstruction at the same time...tumor was 2.5 cm or close to that. My surgeon told me I would never even need a mammogram on that side because the breast tissue was gone now it’s stomach tissue. Actually both surgeons told me that. They wanted to do chemo to shrink the tumor and do a lumpectomy but I refused and had them just take the breast they also took three lymph nodes all clear. I didn’t have the chemo before the surgery however now they are pressuring me to do both chemo and radiation but I’m having reservations since they found no sign of cancer in surrounding tissue even checked chest wall and had every possible scan. If I had the choice I would have had both off now I still need to worry about the other side. Bad enough going through this once I can’t imagine a second time. Best of luck to you