My leptomeningeal journey

[agness]

-- 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)

[agness]

-- Part 3 --

From the time I was diagnosed I was of the mind -- if I have to do this awful stuff to my body, how can I do the least amount of damage?

I tracked down a Chinese Medicine practitioner also experienced in Medical Qigong and working specifically with cancer patients (he's from Beijing) and also jumped on it when I learned that there was a sub-specialty for naturopathic oncology. Working with these two practitioners I began the exercise of trying to restore my body -- something my medical oncologist wouldn't test for, wasn't interested in, and frankly wasn't going to change how he took care of me -- my kidney and liver were functioning just fine.

From a Chinese Medicine standpoint I had continued to slide from where I started with my uterine fibroids diagnosis years earlier -- spleen qi deficiency, blood qi deficiency, blood stasis, liver qi stagnation to which was added kidney yin and yang deficiency. My only hope was that I hadn't depleted by "jin" or life force, too much. I held onto the adage "restore the blood, restores the qi, which renews the jin". I started with weekly acupunture treatments and several herbal combinations that have changed a little as I have gone through treatment and I know it is helping, even if behind the scenes. My doctor says, you don't even need to believe it works but it will help keep your immune system up. Using Chinese herbs I was able to avoid taking neupogen during treatment and my WBC levels stayed tolerable (take chemo which flattens the blood then take another drug to force the bones which requires a third drug to deal with the pain and side effects -- what?)

With my naturopathic oncologist I was able to get additional blood labs done at the start, before I did any treatment. My copper was sky-high, my zinc, magnesium, and ferritin at the floor. I had low vitamin D levels. I have learned from my research that in any patient population that doctors assume that you are in-range and proceed with treatment from there. The fact is that most breast cancer patients levels are off and they need to get their bodies into a healthier place -- but no one checks, no one tells them, no one in oncology knows how to do this.

My naturopathic-onc said it was part of his training to just figure out what was off of the things that are most often off. I even went to a TNBC metabolic discussion at a research institute here in Seattle last Spring. The researcher was talking about all these enzymatic reactions and I knew from my research that they are all dependent on zinc level being good. But, TNBC patients tend to have very skewed copper/zinc levels -- so how can you assume that these enzymatic reactions would be available at all? He couldn't answer my questions.

I wanted to also protect my ovaries, totally not a concern for me as I was HR- I didn't want to be forced into early menopause. The only reason chemo attacks them is that the proliferative cycle that the ovarian cycles go through in developing follicles is constant -- those rapidly dividing cells that cell-phase specific cytotoxins are so great at nailing. Why make me go into menopause and deal with all the resulting bone and memory issues if I didn't have to? I asked about ovarian suppression of my oncology and gynecologist and they couldn't support it. Very frustrating. In the end early trial results came back showing that ovarian suppression during chemo did actually help and I got my Zoladex shot that covered round 5 and 6 of chemo. Five months after finishing my TCHP my period came back.