Breast Cancer - Full Diagnosis

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post about my initial diagnosis

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

Appointments and tests

Finally the day of the appointment with the breast surgeon arrived. I was nervous. but pleased that something might finally start happening. I was called in first to see a doctor and the breast nurse. They explained my diagnosis so far (which I already knew) and took some information from me. Then I met the breast surgeon. She said I would be needing surgery, but that it would be necessary to have some tests and scans first to determine exactly what they would be dealing with and what kind of surgery would be needed. This was frustrating as I felt that I could have been having these tests over the last month while I was waiting for the appointment. Anyway, as it turned out I was booked in the next day for a contrast mammogram and the following week for a CT and bone scan.

After I saw the surgeon, the breast nurse spent a long time with me making sure I understood everything and that all my questions were answered. This was very helpful. She also gave me the direct phone number for the nurses' station at the clinic and said to call any time. I have since called a few times with burning questions and the nurses could not have been more caring and helpful.

The first test I needed was the Contrast-enhanced Spectral Mammography (CESM or CSM), which involved the injection of a contrast dye, which shows up the cancer in a mammogram. A cannula is inserted for the dye injection (Top tip: drink plenty of water before you have the cannula needle. I didn't and it took six attempts!). The dye is then injected by a machine into the cannula. There is an immediate and weird sensation of having wet your pants (which doesn't happen). You then have the mammogram, which is like a normal mammogram where each breast is squeezed between two thick perspex plates, once vertically and once horizontally, and images are taken. 

This photo is my squished left breast (I didn't think that is a sentence I would ever write on my blog). The white areas clumped together in the top half is the cancer. 

 

The next week I had a cannula inserted again. I didn't have any problem with the cannula this time as I'd drunk loads of water beforehand, even though I was fasting (fluids were allowed). This time I was having a CT scan and bone scan. To start with, I went to Nuclear Medicine where I was injected with a radioactive substance for the bone scan. This takes three hours to seep into the bones, so while I was waiting I went to Radiology for the CT scan. I had more of the dye that makes you feel like you've wet yourself and then it was onto a platform which is moved in and out of a hole in a massive machine. It was cold, but luckily they had given me a blanket. I had to lie completely still. I thought happy thoughts about my dog and it wasn't too bad at all.

I was then allowed to have some food and a coffee before going back for the bone scan, The process was similar to the CT scan - in and out of a big machine and it was time to go home. 

Diagnosis

A week or so after the scans I saw the breast surgeon again. This time I was given the full diagnosis (a month and a half after the initial cancer diagnosis). I was told that I had Stage 2, Grade 2 invasive lobular breast cancer that was oestrogen and progesterone positive and HER2-. The lymph nodes did not seem to be affected but one was enlarged so I was referred for a PET scan to check it out. There was no evidence of cancer elsewhere in my body.

That's a lot to take in. Broken down this means:

Stage 2 - a cancer diagnosis has four possible stages. Early breast cancer is Stage 1 or 2. Determining the stage is very complicated and is explained more here.

Grade 2 - this determines how quickly the cancer cells are growing with 1 being slow growing and 3 being fast growing. Mine was intermediate.

Invasive - meaning that the cancer has spread within the breast

Lobular - breast cancer occurs most commonly in the milk ducts (ductal) or the milk glands/lobes (lobular). Only about 10% of breast cancers are invasive lobular.

Oestrogen and progesterone positive - my cancer uses these hormones to grow and blocking these hormones is an important treatment option.

HER2 negative - HER2 is a cell surface protein controlling cell division. HER2- usually means less aggressive cancer than HER2+.

Lymph nodes - lymph fluid from the breast drains into lymph nodes under the arm, so if the cancer spreads, this is the most likely place it will reach first. I have an enlarged lymph node that needs further investigating.

Treatment Plan

I was told that the treatment plan was mastectomy of the left breast with chemotherapy likely after surgery. Lumpectomy was not an option as the cancer had already invaded the breast. The prospect of chemo was quite a shock as I had assumed the mastectomy would be enough. Apparently lobular breast cancer is a bit insidious and can send cells off into the body, requiring chemo to sort them out.

The surgeon said that I could have a breast reconstruction at the time of the mastectomy as long as the plastic surgeon was available within 4-6 weeks. If not, she would need to do the mastectomy by then as it was too risky to wait any longer. If the reconstruction was done at the same time as the mastectomy, I could have what's called 'skin-sparing and nipple-sparing surgery' which means that I could keep my breast skin and nipple and have the breast re-filled (my terminology!) with an implant or some of my own fat tissue (eg. from my tummy). If I just had a mastectomy I would lose the skin and nipple, affecting future reconstruction options. I had read extensively about reconstruction and I definitely wanted to see if I could have the reconstruction done at the same time as the mastectomy and the tummy fat one if possible - called a 'DIEP flap' procedure, which has the added bonus of a tummy tuck, but on the down side has a long recovery time. My surgeon agreed to send a referral to Plastic surgery and see if someone was available. She also raised the possibility of starting chemotherapy before the surgery, depending on when it would be. 

After seeing the surgeon I went in to see the physiotherapist at the breast clinic. She went through exercises I would need to do after surgery to regain movement in my arm and help healing. She seemed confident that I could return to hip hop dancing once this was all over. Maybe I'll be on stage again with my lovely dance mamas before 2022 is over! She then explained about lymph node removal and possible swelling (lymphoedema) of the arm that could result. She took incredibly detailed measurements all along and around my arms as a baseline measurement to use later to determine if swelling had occurred.

So, now more waiting. Waiting for the PET Scan and waiting for an appointment date with the plastic surgeon. Meanwhile I keep reading about breast cancer (when I feel able - sometimes it's too much and I get emotional and need a break), going for walks, planning Christmas (which has now been and gone and was lovely), sewing and spending time with people I love. I am taking things day by day and trying to do something nice every day, because waiting for phone calls about appointments and results means that planning anything is almost impossible. It's hard, but I'm in a bit of a rhythm now and I'm getting good (well a bit better) at pushing away thoughts that become too overwhelming. My partner is always a good listener to my ramblings and worries and I feel so much better after putting them into words. One day, I said to him that I was worried I might not have enough tummy fat to make a boob and he kindly reassured me that of course I did!!

Next I should have some news from the Plastic Surgeon. 

And for those who come here for the sewing, here's a bag I made last week. It's the Buckley Tote by Elbe Textiles with a few changes due to fabric constraints :)