Rest in Peace Jack

I was so saddened by the death of Jack Layton today. I am taking his last letter to Canadians to heart. I WILL be optimistic, determined, and focused on the future in my fight against cancer and I will be loving, hopeful and optimistic in life. Because he is right - it is better.

Diagnosis

Diagnosis Day was a long time coming. I first went to the doctor for a rash in April 2011. The rash was on my nipple. Now there’s a word you don’t hear in everyday conversation, but you’ll need to get used to it if you want to read my blog! So, nipple, nipple, nipple, breast, breast, breast, boob, boob, boob. Everybody good? Ok, back to the story.

I’d had this rash on my nipple (once more – nipple, nipple, nipple) for over a year. It was pretty minor, a lot like the eczema I have on my toe. It came and went and, aside from a bit of itching, didn’t really bother me too much. Until April – that’s when it started to hurt. I went on the internet wondering what it could be and came across something called Paget’s disease, a cancer of the nipple. With a sinking feeling, I realized this closely matched my symptoms. Although, the images online of Paget’s looked nothing like my rash, so I hoped that maybe I didn’t have cancer.

I went to the drop-in clinic and the doctor gave me a cream, thinking it was eczema. The cream helped with the rash, but it still hurt so I went back to the drop in clinic and was referred to a dermatologist. The dermatologist initially wanted to send me for a biopsy because my nipple was a bit red and swollen, but when I told him I was still using the cream he said that it might just be a rash that the cream took care of and that I should stop using the cream and come back in two weeks. Two weeks later, the swelling had gone, although there was a small red patch and a wee bit of scaling. Nonetheless, the dermatologist said it looked perfectly normal and that it definitely wasn’t Paget’s. Overall, he seemed to resent the invasion of the internet into his practice.

He said that the rash was caused by friction. I questioned him because I’m not a runner, particularly after my ankle surgery late last year. But, he said it was definitely friction and that I should get something called ‘Body Glide’, which would reduce the friction. I did get BodyGlide, but it didn’t really help.

I decided that I didn’t trust this doctor’s diagnosis and wanted a second opinion. I went to the False Creek private clinic on July 13, where the doctor there immediately wanted to biopsy. I had the results the next day. I received the results on Bastille Day, the start of the French Revolution. It was also to be the start of my revolution against cancer, because I was positive for Paget's cancer of the nipple. Sucks to be me.

Tip 1: Trust yourself and listen to your body. There’s a reason it’s a cliché.

I found out about my diagnosis at work. It seems like work wouldn’t be an ideal place to receive news like this, but then, there isn’t a good place to find out you have cancer. In a sense, I was lucky because my colleagues were wonderfully supportive. One colleague, in particular, had experience in the health sector and knew exactly the right words to say. She was such a calming influence that night, I will be forever grateful. She was also able to get me in to see a family doctor the next day, since I hadn’t had one up until that point.

Tip 2: Get yourself a family doctor! I’m sure that if I’d had a family doctor, I wouldn’t have waited a year to get my rash looked at and I wouldn’t have had to pay $2000 to go to the private clinic for a biopsy.

I’m not sure if I realized it at the time, but I was definitely in a state of shock. I came home and my wonderful hubby, Pascal, had made me a great big dinner. For the first time in my life, I couldn’t eat. I had never understood how some people could lose weight under stress; I guess I had never been stressed enough.

The next day I went to my new family doctor, a lovely lady whom I liked immediately. She palpated my breast and, luckily, didn’t find any lumps – yay! She also set me up with an appointment for an ultrasound and mammogram the following week. Yikes! A week never seemed so long.

The feeling of shock lasted for several days and left me exhausted. The whole experience seemed so surreal, as if it were happening to someone else. One night shortly after my diagnosis, long-time friends of ours brought over a delicious dinner. For a moment, I forgot and it was like old times. Then, it all came rushing back. Hello again Black Cloud; will you never leave me alone?

That first week was really hard. It was a rollercoaster of worry and hope. Pascal and our two little poochies, Zeus and Zena (a.k.a., the Z Team), distracted me with walks, bike rides, and the Harry Potter series (excellent escapism if you need it). Telling my parents was a nightmare; ‘your child has cancer’ is not something any parent wants to hear.

Finally, the week was up and it was time for my mammogram and ultrasound. Neither found any evidence of a lump (double yay!), but the mammogram did find an area of calcification. This wasn’t surprising to me because Paget’s is almost always associated with an underlying cancer. The prognosis is much better when there isn’t a palpable lump (as in my case!).  The theory is that the cancer begins in and moves through the milk ducts to the nipple, which then results in the rash. If I am lucky in any way, it is that the Paget’s may have given me an early indication of an underlying cancer. If I hadn’t had the rash, I wouldn’t have gone to the doctor until there was a lump.

A mammogram was also taken of my other breast. The radiologist report states that this breast is ‘unremarkable’. I’m pretty sure that’s radiologist-speak for ‘fantastic’:)

Next step: a core biopsy of the area of calcification.

My core biopsy didn’t happen until August 11. The wait seemed like forever. When the day finally came, I was nervous but looking forward to finally finding out what the cancer was doing. The procedure itself was uncomfortable, but not that painful. I was much more worried about the diagnosis.

We got the results on Aug. 17:

Intraductal carcinoma, solid type, nuclear grade 3 with comedo necrosis, retrograde lobular involvement, distorting fibrosis and microcalcifications.

Quite a mouthful, isn’t it? There are two key takeaways from the results: 1) Intraductal carcinoma (a.k.a. Ductal Carcinoma In Situ, DCIS) means the cancer is within the milk ducts and hasn’t spread to neighbouring tissue (i.e., it’s non-invasive) - this is really good news; and 2) nuclear grade 3 means that the cancer cells are dividing very fast (i.e., it’s aggressive) – not so good.

While the aggressiveness of the cancer is scary, radiation and chemo both work best on cells that are dividing quickly. So, if I have to do either or both, they will probably be more effective than if the cancer was less aggressive.

We are now waiting to hear about an appointment with an oncologist to plan out Operation: Kick Cancer's Ass. The usual treatment for Paget’s with DCIS is surgery, either a lumpectomy or mastectomy. Surgery may be followed by radiation and/or chemo. Usually, women with DCIS don’t get chemo and I’m hoping that will be the case for me.

Stay tuned!