Back Pain

[TiffanyS]

Hi Juls, I’m very happy that T-DM1 is offered here, and I hope it works for me when the time comes for me to take it. My doctor told me it works well for most people, but not all. She told me the same thing about Perjeta, and it’s not working as well as I thought it would. Oh well. I hope the review board agrees to fund T-DM1 in Scotland. If it doesn’t, I hope you all keep on fighting for it, as it’s a necessary medication for people with HER II positive breast cancer. It is a home run for a lot of people, can save lives.

I still have one more ultrasound schedule for the end of the week in order to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing. If they are, we will know that they are cancerous. If not, we will know that they are just scar tissue. After that, I should be done with tests until May, other than my echo test due in the next couple of weeks.

I don’t understand half of what the genetic test results are saying, so I’ll have to discuss it further with my doctor in two weeks. I just know that it says I have 11 mutations, and that there is a medication I can take for three of the 11 mutations. In regard to the rest, there are currently clinical trials taking place to find a medication to help with those mutations. I’m not sure if my doctor will put me on the other medications or not. They may interfere with my chemo.

If my back pain comes back, I will definitely ask my doctor to send me for an ultrasound to see if it’s my gall bladder. I’m just happy it’s not the cancer spreading to my bones/spine!

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second 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 post surgical. 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. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone 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 18 months).
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. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. 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. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results 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 TDM-1 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 in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, 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 scar 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 – CEA blood test to determine Tumour markers. Results were normal (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! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – results are mixed. The good news is, lymph nodes are stable, there was improvement of previous lung changes due to radiation, and the cancer has not spread to my bones, spine or liver, etc. The bad news is that while some lung nodules remained stable, others increased by 1-2 mm and new ones have shown up. All of them were less than 1cm.
03/17 – Second brain MRI –awaiting results
03/17 – Ultrasound scheduled to determine size of “pimples” on my chest wall. They will follow up with a second Ultrasound in three months, to see if they are growing
05/17 – Full Body CT Scan Scheduled to see if I’m still stable

[Cathya]

Tiffany;

Years ago, prior to my diagnosis of breast cancer, I had a pimple like thing on my chest. I went to see a skin doctor about it and he told me he couldn't tell if it was nothing or a metastasis. He gave me some cortisone cream and told me to use it for two weeks and if it didn't go away to come back as it was then likely a metastasis. Just a thought. Of course I guess that wouldn't work for scar tissue but this does happen to lots of us.

Cathy