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agness · 12-08-2015, 04:15 PM

-- part 2 --

When I was first diagnosed they were sure I was metastatic.

I had been breastfeeding through two pregnancies and thought since cancer didn't run in my family that I was cool. My ob/gyn told me to wait for mammograms until I stopped nursing -- I had my second son when I turned 40.

I found the lump in October but delayed getting screening because (1) my ob/gyns office forgot the year before, (2) it had to be something else, (3) we had back to back travel plans coming up out of town, (4) one of my kids had croup and I had to reschedule. I finally in January of 2014 was like I have to do something about this and got in to the breast clinic at my hospital which still took another two weeks wait.

The very first day they did a mammogram, then ultrasound and the radiologist said "this isn't anything else". They had an opening in a couple of hours for a core biopsy and so I took it. The imaging lit up on the lower-outer portion of my left breast (around 5cm breast tumor), my left axilla was so lit up that they didn't even count, and I had an internal mammary node behind my breastbone that looked as if it contained tumor as well.

Over the next two weeks I had an MRI, PET scan and bone scan. Since I had no symptoms of brain disease or penetration they never took the scans up that far into my head.

I tried to find the significance of the internal mammary node on the breastcancer.org site -- only crickets. My doctors also couldn't tell me the significance of that node.

In Chinese Medicine they divide the breast into four quadrants -- inner and outer, upper and lower. To have cancer on the outer side was a better diagnosis to have. To have cancer on the inner area was detrimental. That internal mammary node really got me wondering.

After 3 rounds of neoadjuvant TCHP, a drug combo they still don't have study results available for in the early stage population (July 2016, maybe?), I asked my MO -- what if it comes back. He was very reassuring that it wasn't going to come back, but if it did we would deal with it then. At no time did he ever point out the very real risk of brain mets.

After 4 rounds my MO said he couldn't feel tumor any longer. My Chinese Medicine doc said he felt the tumor was gone. My cranio-sacral therapist who does energetic work felt it was gone.

(Gotta pick up kids at school, more later)

12-08-2015, 04:15 PM	#3
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: My leptomeningeal journey -- part 2 -- When I was first diagnosed they were sure I was metastatic. I had been breastfeeding through two pregnancies and thought since cancer didn't run in my family that I was cool. My ob/gyn told me to wait for mammograms until I stopped nursing -- I had my second son when I turned 40. I found the lump in October but delayed getting screening because (1) my ob/gyns office forgot the year before, (2) it had to be something else, (3) we had back to back travel plans coming up out of town, (4) one of my kids had croup and I had to reschedule. I finally in January of 2014 was like I have to do something about this and got in to the breast clinic at my hospital which still took another two weeks wait. The very first day they did a mammogram, then ultrasound and the radiologist said "this isn't anything else". They had an opening in a couple of hours for a core biopsy and so I took it. The imaging lit up on the lower-outer portion of my left breast (around 5cm breast tumor), my left axilla was so lit up that they didn't even count, and I had an internal mammary node behind my breastbone that looked as if it contained tumor as well. Over the next two weeks I had an MRI, PET scan and bone scan. Since I had no symptoms of brain disease or penetration they never took the scans up that far into my head. I tried to find the significance of the internal mammary node on the breastcancer.org site -- only crickets. My doctors also couldn't tell me the significance of that node. In Chinese Medicine they divide the breast into four quadrants -- inner and outer, upper and lower. To have cancer on the outer side was a better diagnosis to have. To have cancer on the inner area was detrimental. That internal mammary node really got me wondering. After 3 rounds of neoadjuvant TCHP, a drug combo they still don't have study results available for in the early stage population (July 2016, maybe?), I asked my MO -- what if it comes back. He was very reassuring that it wasn't going to come back, but if it did we would deal with it then. At no time did he ever point out the very real risk of brain mets. After 4 rounds my MO said he couldn't feel tumor any longer. My Chinese Medicine doc said he felt the tumor was gone. My cranio-sacral therapist who does energetic work felt it was gone. (Gotta pick up kids at school, more later) __________________ Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall. Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy. 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED. 10/27/15 atypical uptake in right cerebellum - inflammation? 12/1/15 Leptomeningeal dx. Starting IT Herceptin. 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly 3/2016 - stable scan 5/2016 stable scan 7/2016 pseudoprogression? 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT 11/2016 Cyberknife to temporal lobe, HBOT just prior 12/2016 - lesions starting to show shrinkage 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone. Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing. Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.