Triple positive-Always a recurrance?

[TiffanyS]

Thanks Tricia. I should know by mid November if the Perjeta is working and will keep you posted. I hope it does! I am glad to hear that you have been NED for 11.5 years Karen. I hope you stay that way!

[karen z]

Me too (!) but I try and take it one day at a time and hope for the best.

[TiffanyS]

I went to the hospital today for my second Perjeta treatment, and I got the results of my CEA blood test, which was normal (my results were 2.7). My doctor told me that the fact that my CEA level is normal could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. My next CEA test will be in November, and we will know more once we get those numbers back. Given that the CEA blood test is not accurate for everyone though, I told my doctor that I didn't think it was a reliable way to determine if the new medication is working, and she agreed. She's going to send me for another CT scan on November 22. So, I don’t know for sure yet if the Perjeta is working, but I hope to know more after my CT scan. If it is working, I’ll only have to take eight doses of Taxol, instead of 16, which means I’ll be done with chemo by mid-December. My doctor also advised me that she's going to arrange for me to get genetic tests done (I have already done the BRCA test and am expecting the results on November 22). If any of the test results come back positive, I may qualify for some experimental drugs. She's going to try and pull some strings and get me this appointment as soon as possible, but it may be months before I get an appointment. I asked my doctor how long the Perjeta works for most people, and they told me that they have one women who’s been taking it for five years and is still stable, however, most of the women who took it during the Cleopatra trial remained stable for two years. I hope it works for five years for me, but, at this point, I will talk whatever time I can get. At least I have the T-DM1 as a back-up if the Perjeta doesn’t work!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!

[Carol Ann]

That's progress ... praying that the scan will show you are indeed stable!

Carol Ann

[TiffanyS]

Thanks Carol Ann! I’m hoping the scan shows that I am stable too! I wish I were getting it sooner than November 2 though. The waiting is the hardest part!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer)
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. Also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scare line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – Take first CEA blood test to determine Tumour markers. Asked for PET scan, but am told I don’t qualify.
10/16 – Waiting for brain MRI to confirm that cancer has not spread to brain!
10/16 – Get results of CEA blood test, and it is normal (my results were 2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me!

[Carol Ann]

It IS hard to wait!! ARRRGH

Please know that we are with you!!

Carol Ann