My breast cancer tumor was thought to be 2.2cm. Scans showed no cancer in the lymph nodes. The doc understood I lived with immune deficiencies, that my family had an extremely high cancer rate and that I was nervous of how taxing radiation or chemo would be. I knew I didn’t care about cleavage, that I’d invested my life in my personality, not my breasts.

When other girls were 9-10 they maybe imagined the breasts they’d have when they grew up, how they’d look like their mother, have babies, be sexy. I didn’t. At age 9-10, I’d identified with trees and cats, rabbits and the wind, sun and the clouds and had little concrete idea of my gender, that I was the kid with no top happily running about the streets like ‘a boy’. I knew I’d been confused about the progressive paranoia that I should cover up, the growing fixation of those around me that I should care, notice or identify with my budding breasts and cover them up.

It was Tuesday 26th and I was talking to my counselor about the planned lumpectomy booked for Thursday 28th. I explained my feelings about the tumor, that my awareness of the types of cells, that their origin as comedocarcinomas meant they may have a 50% chance of returning to the same breast within 5 years of treatment, and my preference for getting the entire breast removed (mastectomy) to avoid future surgery, even to avoid radiation and chemo and the impact on my immune system. ‘Did you tell this to the surgeon?’, he asked. I hadn’t, and I told him. I explained that I tended to be so busy processing the other person’s language that I didn’t find how to gather up my thoughts and convey them cohesively in face to face speech in real time. ‘Write it’, he said, reminding me I was a damned strong, concise writer and that my surgeon would then see the clarity of my reasoning and consider the mastectomy option, normally preserved for tumors larger, more problematic than my 2.2cm one.

I wrote to her that night. Two days later I arrived at the Nuclear Medicine Dept for my injection of radioactive isotopes at 7.30am. I was on the CT scanner and Chris sat with me. They injected my tumor via the nipple, one of the most painful injections of my life, and the dye traveled from my tumor to the Sentinel Node to show them where the node was so they could then find it on the CT scan and finally mark it with an X with a marker pen.

Then Chris and I were free to go for a few hours, him able to eat and drink and me having to fast. Finally, the time came for him to take me for surgery (it takes a few hours for the dye to fully work its magic, magic the surgeon would follow). We arrived for my lumpectomy, meeting Denise in the lobby who had arranged to meet us for support and sisterhood, for me and for Chris. She and I become naughty monkeys, spurring each other on into progressively more surreal tumor-humor, so one of the hardest days of my life was full of laughter, for me, for her, for Chris.

Presuming an overnight stay at most, I had packed lightly. My husband, Chris, and pal, Denise, were in the ward with me as I got into my bare arsed hospital gown and the nurse got me into compression stockings and fitted my legs with inflatables that would massage my legs throughout the op and all the way through the first night after surgery.

The time had come, Chris and Denise wished me wall as I headed off to surgery. I was put into a cubicle, cap on over my hair, a warmed blanket onto my body. The anesthetist came in and we discussed vomit and how I’d get an anti vomit medication in my anesthetic. Then the surgeon came in. She is a delight, its like having Mary Poppins for your surgeon. We were ready to go in for the op within 10 minutes. She told me she’d got my email, read it thoroughly and that yes, mastectomy was an option. She asked if I was sure. I was. Then I signed my breast away.

Ten minutes later I was in the operating theatre. The surgeon held my hand. I hold nobody’s hand but I held Mary Poppins’ hand. ‘What’s your happy thought?’, she asked me. ‘Laying on Chris on the sofa, him watching Time Team and me falling asleep because it’s boring’, I replied, telling her about the coziest place I could be. ‘Wonderful’, she said, as the anesthetist found a vein and I magically disappeared into sleep.

I woke in a private room, Chris next to the bed. It was several hours later. My left breast and sentinel node were gone. My drain tubes were tied to the bed. I drifted in and out of sedation. Chris held my hand, so overjoyed to have a tumor free wife with all her soul intact. I patted my flat chest, ‘Flatsy Patsy’, I told him, smiling. I touched my other breast, ‘One Booby Ruby’, I chuckled. I told him I was so happy, that the tumor had left the building. ‘Me too’, he said like a man in love.

That night I woke with the nurses. I wanted to pee. But my blood pressure was too low to safely leave the bed. I would have to pee on a bedpan. Some women will already know that a woman’s anatomy is not well designed to pee laying flat on one’s back. So, sure, my pee dribbled into the bedpan but that lay along my backside and soon I felt warm pee on the small of my own back. The nurses told me not to worry, they’d clean me up, me who won’t let anyone help me, who barely lets people physically handle me. But I did.

Hours later, I asked to be let up to use the toilet. No, it would be the bedpan again. By the third pee I insisted, I had to graduate. They took my blood pressure, found it had raised enough to let me stand, then helped me wheel my drip stand and carry my drain tubes off into the toilet cubicle. Success.

By the next day I was eating and drinking, getting up to walk several times through the day, and indulging in my most off the wall ‘tumor humor’, determined to recover. In between I slept, exhausted, ate to regain strength and maintain immunity, looked forward to seeing Chris and the visitors who were coming to normalise my day. By day three I was dressing in street clothes and asked for an hour’s day leave to walk at the local lake, complete with a black satin shoulder bag (made for Chris’ recent hospital adventures!) in which I carried my drain bags that drained body fluids from the amputated breast area. By day four I asked Chris to take me home for day leave and spent 6 hours there before returning to the hospital. I had got by on two Panadol every 6 hours.

On day five I had fasted ready for my brain, body and bone scans so had to fast and that meant no pain killers since the night before. Out came the drain tubes, without pain killers, ouch. Then off to the CT scans where I’d be injected again with radioactive dye but through IV. With my IV canula removed when the drip was removed, they had to find a vein again. First try, no luck. The vein collapsed. Second, third, fourth, fifth tries, and each one my flimsy thin veins just collapsed. The doctor drove the needle deeper and deeper, digging for a vein without luck. It was PAINFUL. He tried my foot. The vein again collapsed. Finally I was wheeled to Ultrasound to find a deep vein via the ultrasound machine. They found one, hoped, and it stayed intact. Then into the scanner.

Finally, I would be able to go home. Now, I had only to wait for my results. If the lymph node biopsy and brain, bone, body scans were all clear, I would have avoided radiation and chemo. I would know soon.

By Tuesday I had my results. They were good. The lymph node was clear of cancer, the brain, body, bone scans showed no cancer. But my tumor was not 2.2cm. It had been 3cm. It was standard that removal of tumors of 3cm and upwards were to be followed by chemotherapy. And there were a few other anomalies.

My lymph node was clear of cancer but pathology found it ‘benign with reactive changes’. Not totally clear what ‘benign with reactive changes’ means but from what I can gather it means it had been reacting to something challenging the immune system and had undergone some structural changes. I understand these changes could then have made it more vulnerable to infiltration by cancer cells, BUT IT WAS NOT FOUND TO HAVE CANCER. So why chemo?

Apparently because a FEW cells could have passed through the node without embedding there and got into the body where if left unchecked can be free to develop into new cancers in other body parts… and Sentinel Node Biopsies in those with tumors 3cm of more have some degree of false negatives meaning cancer can have entered the lymph system even though the biopsy presents signs the Sentinel Node did not become cancerous. And if cancer cells had got around to other part of my body, ready to start new tumors, chemo would stop that… but so might hormone therapy to a degree… and so chemo was still ‘on the table’.

But NO, I do not have other cancers, just I COULD have a FEW stray roaming cancer CELLS that COULD become tumors if we don’t just go zap them… even though we may be zapping NOTHING but my own good cells!!! And, yes, in the process we could/would damage my skin, hair, nails and white cells (the ones I have) and yes, that is really risky with someone with immune deficiency… so I have things to weigh up and think about…hmmmm.

Plus my cells were estrogen receptive so hormone therapy would be my route. But Tomoxifen wouldn’t suit me (low white cells, strong family history of bowel cancer, aunt with uterine cancer etc) and Zoladex, the alternative, would put me into temporary menopause. I figured I might as well get my last ovary out and cut to the chase. I’m 47 so menopause would have been anywhere in the next 3-8 years anyway.

My scans found NO cancer but did find a 0.6mm lesion on my liver (which may be a cyst) and a 3cm and a 3.5cm pair of lumps in my uterus they think may be fibroids so have to make sure these things are playing nicely and no surprises. If ultrasound finds otherwise, we’ll fix them up. If my uterus is in trouble I may then face hysterectomy (aiaiaiaiai) but at least that will solve my estrogen drama!

And, yeah, I now did have the choice to get my other breast removed so then I’ll be Flatsy Patsy but not One Booby Ruby and ultimately I would get that funky mastectomy tattoo. I did have my morning without the bandages today. Pretty wild to see one’s body after mastectomy. I checked everything else that hadn’t changed, including my soul. It was fab Chris feels I’m as gorgeously Donna as I ever was. He is not a saint, just a man who loves being loved by someone he is so glad is now less likely to die and a man who loves someone who is so much more than the Kmart body she got through this life.

So next week I start my journey with the Oncologist. That’s the person who will juggle my treatment plan in tandem with my surgeon (who is also an oncologist). His first name is Phil. So I think I’m going to see Dr Phil 🙂 Will I discuss chemo? I’m trying to stay open minded, even with white cell, IgA and IgG2 deficiencies. The alternative is to risk that a few breast cancer cells didn’t break out, that no other types of cancer cells were starting up in a body where the cancer process was clearly activating. How would I feel if I learned I got it wrong? That I could have killed off those few cells and survived chemo but didn’t and instead cancer got to proliferate and come back in places I can’t just cut off?

So I made a queue of priorities.

a) research Zoladex to be sure it would suit me with my immune system issues and family cancer history
b) continue to build myself up using diet, lifestyle, supplements to handle what’s coming up.
c) take Zoladex to switch off the food supply to any future breast cells and breast cancer cells, accepting this means temporary menopause
d) get the colonoscopy I was booked for before I was diverted by breast cancer and accept any required treatments accordingly to avoid putting bowel cancer into the mix.
e) have ultrasounds to ensure the liver and uterus are only hosting cysts and fibroids and deal with the results for good or bad in the most constructive way
f) openmindedly consider the chemo recommendation in the context of my immune system status at that time
g) consider a long term solution to the estrogen issue – ie removal of my last ovary
f) consider removal of the remaining right breast
g) get the mastectomy tattoo and live happily ever after.

Warmly,

Donna *)

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.