at 10am, after a diagnostic period lasting 11 months, I begin chemotherapy.
[This is long. Coffee and a cut lunch may be needed.]
Chemo and 2 targeted treatments will be given for 12 months. Probably in February, treatment will pause for the removal of a breast and some lymph nodes. Radiation will round out the treatment.
The cancers are breast cancer and Paget's Disease of the breast. The breast cancer is invasive. The tumour and nipple cancer is aggressive (Her2+). All 4 quadrants of the breast have cancer and pre-cancerous activity. The tumour is 2.5cm long. Cancer has reached one lymph node under my arm. It is classified as Stage 3 cancer.
I didn't feel a lump, and hadn't undertaken a routine BreastScreen.
In April 2023, I noticed a crust on my nipple.
Thinking it was a dermatitis, I applied moisturiser (Neutrogena Norwegian formula hand cream - it fixes everything, right?). I applied it day and night for 4 months with no change.
By August 2023, the nipple cracked and leaked. The leakage would dry onto my bra or shirt. When I removed my clothing, it would rip open my nipple.
This happened for two weeks. On a Monday in August, the moment I woke and opened my eyes, I immediately had a thought: could these be symptoms of breast cancer?
I scurried to my computer to google, as you do, and yes!, they could indeed be symptoms of breast cancer. I kind of knew ...
It was very early in the morning, but my son came out. He had just turned 17. He asked me what was wrong. I said, "I think I have symptoms of breast cancer." We both burst into tears.
Later that morning, I phoned BreastScreen ACT to book a mammogram. Because I had symptoms, they wouldn't see me, advising me that I required a Diagnostic Mammogram. Something told me that was going to be expensive. How little I knew about the costs ahead.
I was seeing my doctor on the Wednesday that week for iron infusions. I asked for a referral, and was able to make an appointment at an I-med diagnostic clinic for that Friday. It was my birthday.
I-med insisted that I would also need an ultrasound.
I had always been terrified of having a mammogram, and burst into tears the moment I walked in. The technician was incredibly gentle with my body and my soul. She was able to completely avoid the painful nipple area. My nipple was visibly disintegrating and houses many many nerve endings. The tech showed her supervisor the images, and returned to do more. I knew; I just knew.
The ultrasound tech had to run the transducer probe over the nipple again and again and again. It was torture. He was lovely, and apologised, giving as much verbal comfort as he could. I asked him if he thought there was cancer. He said that there were two areas of concern.
A week later, the two areas were biopsied. The technician's bedside manner was unacceptable and the procedures were painful. It was a gun biopsy, and he didn't warn me about the loud sound or violent vibration. I felt frayed. A few days later, my GP received the report "non-cancerous calcification". So, no cancer. Hmmm.
GP started me on 3 lots of antibiotics over the course of a couple of months. A staph infection had been detected and later cleared. The antibiotics had no effect on the visibly-suspect painful nipple.
Thankfully, DH found silicone breast shields; and I think these have prevented infection, and allowed me to successfully wear clothing. The only time that I don't wear one is when I'm showering.
GP started me on topical steroid cream. After 12 weeks, there was no real improvement, though sometimes the skin almost closed up again. Mostly it's been an 'open wound' (ulcer) since August.
Towards the end of January, GP said that he didn't know what was wrong with me, and knew that I needed a specialist. He couldn't send me to a Breast Surgeon as they only do cancer.
My 'father', a close friend who lives in a nursing home, is a retired doctor (he was a sex doctor) and pharmacologist. He urged me to go to a Plastic Surgeon. GP agreed, and I asked to go through the public system.
Mid-April. I'm sitting topless on the examination table, and the Plastic Surgeon comes blustering in donning his gloves. He takes one look at me, and says: you have Paget's Disease with underlying breast cancer. Sorry that we've wasted your time. I'll send your file to the Breast Surgery department.
After 3 weeks of not hearing from Breast Surgery, I phoned around trying to find my file. Plastics had lost it. My GP lit a fire, the file was found, and I had my first consultation with the Breast Surgeon.
Breast Surgeon and Registrar looked at the film that I had brought from my August I-med appointment. They turned to me, and asked, "What does the report mean, 'non-cancerous calcification'? There is cancer here, here, here, and here", pointing to various 'spots'.
On-the-spot, I am given a biopsy in my nipple. There are no polite words to describe this special experience. Paget's is confirmed.
I am sent for an MRI.
The results of the MRI reveal a 2.5cm tumour, not previously noticed by anyone; cancer in a lymph node; and cancerous and pre-cancerous cells (DCIS) are throughout the entire breast.
Surgery is scheduled for the end of July.
[The thought of surgery has been, by far, the worst part of this experience. The thought of a mastectomy was both grotesque and ghastly to me. I wished that I would die on the operating table. But then I gained perspective. Is losing a breast really the worst thing that could happen to me? Losing an eye; losing a limb; burns all over my body; and paralysis are all worse than losing a breast. I began to accept and psychologically deal with it.]
I am sent for two more biopsies - on the tumour and lymph node. "Markers" are implanted at the same time. An artery is accidentally cut. A 7' tall nurse comes in to "apply pressure" to the hematoma in order to prevent swelling. Weeks later, I am still bruised. The nurse might be the biggest person that I've ever seen, and he did his job rigorously. There was no swelling, and I am surprised that the breast remained on my chest.
The results are all bad news. Surgery is now delayed; chemo will start first.
I am sent for an appointment to an Oncologist.
I am sent for an appointment to a heart specialist.
I am sent to the dentist.
I am advised that I will lose every hair on my body, and it is recommended that I cut my hair short, followed by a buzz cut, followed by a complete shave.
The Canberra Hospital has long had the longest waiting lists in the country. So far, all of the diagnostics were done in private clinics; most were not covered by bulk-billing despite being ordered through the Breast Surgery department.
I also learn that not all treatment at the public hospital is free. One dose of one of the two targeted medications cost $6,000. I need 6 doses. The company that supplies the drug will cover the cost of the five treatments, if I pay for the first one. Turns out, $6K is a bargain basement price; it used to cost $100K. Breast Nurse tells me that it is known as the 'mortgage medication' because women had to mortgage their homes to pay for it.
There is also a monthly cost for I-don't-know what. We're up to about $10K out-of-pocket so far, and if all goes well, hope to keep all costs within $25K.
Reconstruction. It may be possible to have reconstruction at the time of surgery or it may not. Advice is that most patients require a replacement implant two years after the first one anyway because radiation therapy buggers up the implant or supporting tissue or both. At some point though, patients lose their category one status, and there are years of waiting before reconstruction is offered.
Anyway, I regard many Simple Savers as 'friends', and wanted to tell you my story. It may serve as a warning or guidepost for your own experience one day. I wouldn't wish this on anyone. Right now, I am without fear and anxiety. I'm just getting on with it. I'm yet to deal with I-med.
I welcome any advice.
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.. hair .. short hair .. buzz cut ..
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