OMG! You’ve got cancer! Cancer is a word, not a sentence. I always liked that saying by the anti-cancer council.

I’ve handled that word a few times in my 47 years. I handled before I understood it, when I was 2 years old and part of my hospital admission had been for both suspected deafness and Leukemia. I handled it when I was 25 and got Cervical intraepithelial neoplasia which went from stage 1 to stage 3 in 6 months so they hurried treatment a week later to stop it progressing to invasive cervical cancer.

I handled the C word when I understood my primary immune deficiencies and had a relapse in my 30s, saw 80% of my blood infected, my white cells deficient, my IgA absent and asked ‘isn’t this what happens to people with cancer’? I was told, yes, it does, but I didn’t have that yet and they would work on getting me a functioning immune system so I wouldn’t have to think about the C word waiting for me. I thought about the C word when the immune deficiencies added an IgG2 deficiency to their list, got over run with Haemophilus for 7 months and after 7 months of non-responsiveness to antibiotics had to be bombed with 800mg Bactrim and steroids to finally recover. I thought about the C word when I was then put on prophylactic antibiotics for the next 16 months to avoid other simple bugs my immune system couldn’t help me fight.

I thought about the C word when I got skin cancers cut out in 2006 then 2010 and when I found two lumps in my right breast in 2010 and breathed relief they were just cysts. And I thought about the C word when I understood the 70% cancer rate on my mother’s side, their participation in a family cancer study and my father and his sister having the same cancers and early deaths.

So when a larger lump came up suddenly in two months, I thought it was probably another cyst. It could be easily felt and Chris wanted me to get it scanned without delay. I was diagnosed with breast cancer a week after the scans on July 8th 2011. To be more specific, the mammogram+ultrasound showed a “2.2cm irregular mass in my left breast with spiculated margins and internal vasculation” reported as ‘highly suspicious of primary breast cancer’ with a Bi-RADS categorisation of category 5 (meaning 95% chance it is cancer, with only biopsy taking this to 100% certainty). Biopsies are tomorrow, the 14th July, results by next week. (UPDATE: upon mastectomy it was found to actually be a 3cm)

I of course got flooded with all the stories about some archetypal ‘Mary Smith’ who had survived 30 years after breast cancer, etc, etc, about how it’s ‘probably just nothing’, how it has a ‘95% survival rate these days’. But then I knew that my mammogram+ultrasound results said the Bi-RADS classification for the lump in my left breast was a category 5. A category 5 has a 95% certainty of being cancer. It had to tick 3 boxes to get from category 1 to category 5, to go from 0% chance it was breast cancer, to 2% chance at category 3, to 2-95% chance at category 4, to the 95% certainty of category 5. The one in my right breast only meets two of the three ticked boxes. If I’m lucky that one won’t also be cancer, and there’s a chance it won’t, and still a 5% chance the one in the left breast won’t, but I’d be a very lucky person to win that bet.

And then there’s staging. That’s about the features of a lump. It tells how advanced a cancer is.

And there’s the type of breast cancer, each with their own causes, hormone responses, treatments, prognoses. So the idea that one person’s cancer is any indication of someone else’s breast cancer is a myth. It’s like saying that a person with a broken foot and a person with a gout both limp so what treats one will work with the other. Or expressed differently, it’s like saying that all people with very different autism ‘fruit salads’ all respond to the same interventions and all have the same outcomes. We know that depends on addressing the specific issues at work with any individual person with autism. Well the same is true of cancer – cancer is a fruit salad, even breast cancers are very different types of fruit salads.

And then there’s grading, which is how aggressively a cancer will develop, how fast it will grow, how invasive it will be. One can have a stage 1 cancer but it’s grading is a grade 4, making it a tougher battle than someone with a stage 4 that is very slow developing and a grade 1.

At a guess, the 2.2cm lump in my left breast might fit with a stage 2a, but I won’t know until post biopsies. There are 4 stages and hopefully I’ve caught mine early.

We have to find out how deeply mine has gone. If its in the breast tissue alone, we’re looking good. If it’s into the vascular system (blood) or into breastbone, that’s more complicated. That’s where treatment has to treat not just the breast but the other things the cancer has effected.

Grading, however, can make things more complicated. When they do the biopsy they will also be finding out how fast my cancer cells multiply and how many different types of cancer cells there are. The more differentiated the more complicated things like chemo become. But it’s all doable.

Treatments can include surgery (lumpectomy, mastectomy), radiation, chemotherapy.

Those who believe treatment kills and that leaving cancer without treatment allows the body to take care of itself naturally, need to consider that my immune deficiencies did not take care of themselves and the cancers that have killed my family members with the 70% cancer rate on one side and 30% cancer rate on the other did not take care of themselves either. I am going to do everything else to keep myself well, physically, emotionally, mentally, spiritually, but I’m investing in treatment because my cancer cells have lost their messages and can’t self regulate and my immune system can’t tell cancer from non-cancer cells at present which is how this cancer got to develop. And if I lose my breast/s then once I’m well, there’s always mastectomy tatoos 🙂 And I’d rather lose my breasts than lose my life.

Then there’s resources. Immune function, weight, support, personality, finances, spirituality, food and environment, and healthy genetics are all resources.

I have no weight to spare losing. I have low white cells, low IgA, low IgG2 and have been ravaged by immune and autoimmune disorders for 47 years. I have come from a background of neglect, loss, abuse and trauma and live with PTSD and DID but keep away from my abuser and anyone deeply entangled with that person who would pressure me to have contact with my abuser.

On the plus side I am happy, at peace, grounded, have strong spirituality, a strong positive determined personality. I have good enough finances to afford good food, health care, and afford to lose the ability to work and still have the financial support of my husband. I have wonderful positive friends, a great GP, a lovely surgeon and oncologist, a great counselor, a clean environment and although I have DID, my alters have become wonderful resources. I will have not one person inside battling this cancer, I will have one team leader and 13 alters assisting, each with their own feelings, wisdom, journeys.

I have this cancer in a context of autism, in my case partly personality, partly visual and verbal agnosias, partly a background of gut, immune, metabolic disorders, but my autism will help me with cancer. It makes me logical, practical, capable of detachment, self containment, solitude. My autism provided me with a strong ARTism which sustains me on this journey, connects me with the world. My autism provided me with a strong spirituality and inability to strongly identify with the body or become too personal about it. My body will change in this process, so that is a great resource.

Some breast cancers have a 95% 5 year survival rate. Some have 23% 5 year survival rate. Some have 61%. I won’t know until biopsies where I fit into that picture. And until I know which type of breast cancer, which stage, which grade, then all the survival stories or death stories or ‘how to beat cancer’ stories may have no more application to my case than they do to the sender. And even once all my cards are on the table, my story may play out in a context of immune deficiencies and genetics which someone else with the same type, stage, grade may not have to juggle, making our stories completely different pathways, different journies. My personality and environment, too, will be specific to my journey and could make all the difference.

What I do believe in is my resources. I believe I will do my best with whatever is my lot. I also believe that if we have spent our lives effecting others, we live on in them, so we can never fully die.

I have been offered Reiki, prayers, healing, hugs, tickling, cups of tea, jokes, you name it. Good vibes most welcome.

Warmly,

Donna

UPDATE: Had 2 ultrasound guided 3cm biopsies of the left breast today. Lymph nodes in the armpit were clear on the ultrasound. The cancer appears to be a around 1cm distance from the bone, so hopefully caught early enough before any infiltration into the bone. So at present, all good signs we caught this early enough for a good prognosis. Results next Wednesday re type, stage, grade and treatment plan.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.