Monday, June 1, 2009

Gritty Details About my Breast Cancer

For those of you who find my blog and who will benefit from the details about my particular breast tumour, I'm providing as much information as I know below.

I have Invasive Ductal Carcinoma. My tumour was 3 cm (about the size of a golf ball) and was grade 3 and located on the left side of my left breast. I'm at stage II breast cancer, though I was initially told stage III. I like the sounds of stage II better, so I'm sticking with that.

I had a sentinel node lumpectomy on March 18, 2009, 13 days after my diagnosis. Two lymph nodes were removed and they showed micrometastesis. My margins were clear, though very close in at least one area. For this reason, it has been recommended that I have additional surgery after my chemotherapy. As to what that will entail, we'll cross that bridge when we get there. Meanwhile, my medical team felt it was important to first treat my systemic system with chemotherapy because my cancer is an aggressive type.

My bone and liver scans were clear. Those were the only scans I've had aside from a chest x-ray and a MUGA (heart test), which they do to keep tabs on my heart because of the potential damage to it from one of the chemo drugs.

I started Chemo on June 10. I will be undergoing 3 cycles of FEC (three different chemo drugs ... Fluorouracil, Epirubicin, and Cyclophosphamide) followed by 3 cycles of Taxotere (another chemo drug), each treatment 21 days apart. A PICC-line catheter was surgically "installed" in my right arm through which to deliver the drugs and from which to take blood.

After my chemo, more surgery. After surgery, 6 weeks of radiation. After that, 5 years of a daily estrogen blocker (pills).

How was my tumour discovered?

In August 2007, I felt a big lump in my breast. It was tender and a bit inflamed on the outside. I saw my Doctor and he told me "no worries - it's a cyst". It did subside a bit but never entirely and I was always aware of it. Occasionally it would bother me. I mentioned it to my Doctor a few times and he assured me that it was nothing to worry about.

Last December I booked myself for a physical. I was due for one but I was also concerned about my feeling uncommonly fatigued, I could not keep my weight gain in check, I felt lethargic and not interested in doing a lot of the things I used to enjoy. I was sure something was out of whack. When I saw my Doctor I also reminded him about my lump and told him that sometimes it really bothers me and I was concerned about the possibility that it might burst. I asked him about a mammogram (again ... I'd been asking since my early 40s and he always told me I wouldn't need one until I was 50). I would be 50 in February and my Doctor was in no hurry to book me for a mammogram. He told me to wait until I get a letter from the screening program telling me it was time. Meanwhile, though, he did book me for an ultrasound to look at that cyst and he ran some bloodwork.

When my bloodwork results came back, my Doctor told me everything was perfectly normal. I asked him if perhaps some things were low or high normals that might account for the way I've been feeling. He said no. He asked me if I thought I was depressed. I said "no, though the way I feel is depressING". I asked him if it might be hormonal and if, perhaps, there's something we could do about that? I asked him what my hormone levels were. He didn't really answer that except to note that I haven't had any hot flashes, even though I told him that my Mom didn't get any so maybe I wouldn't either. He then looked me in the eye and he said, "There is no medical reason for the way you feel. Get some exercise!". I was so deflated after that. Yes, I know I need more exercise but I hardly have the energy after a day of work to even get off the couch. Very unlike me and very frustrating. I decided then that I would need to get a new Doctor and dig deeper because I KNEW something was NOT RIGHT.

Then, a few weeks later, I went for my ultrasound. The radiologist said it didn't look like a cyst so I immediately had a mammogram. Two hours later they were booking me for a biopsy. A month later, I was told I have breast cancer. SHIT!!

Also worth noting is that my surgeon commented that I have "very dense breasts". Breast density, I've since learned, is a risk factor for breast cancer. It is caused by estrogen gone wild ... unchecked by progesterone. I was told initially that my tumour was very small. It wasn't until the surgeon got in there that they found it was bigger than expected and that's mostly because, I believe, of the breast density. Dense breast tissue shows up white in mammograms. So do tumours, so it's hard to see the borders or even to detect tumours at all sometimes. If you think you might have dense breasts, make sure that your next mammogram is done using one of the new digital mammogram machines. They're better at detecting tumours in dense breasts. Some women with dense breasts get MRI's instead of mammograms.

I also learned that my tumour is estrogen fed. The estrogen in my tumour was at 100% and the progesterone was 15%. I did a little research on that and learned about "estrogen dominance". It, too, is a risk factor for breast cancer. The symptoms of "estrogen dominance" are almost exactly the symptoms I've been experiencing over the past 5 years ... fatigue, weight gain, dry skin, etc. Obviously my Doctor doesn't believe that women's hormones factor into anything. Obviously they do.

Other details about my tumour are that it is HER2 Negative.

As I learn more about my particular situation, I'll add them here.

Update: January 15, 2010:

I decided against having additional surgery. My surgeon supported that decision. I've finished chemo and radiation. I experienced many side effects and had lots of ups and downs but still got away without experiencing some of the nastier side effects.

My worst and most lingering side effect has been from the Arimidex (the estrogen blocker I was to take for the next 5 years). Six weeks after being taken off that drug, I'm still experiencing joint, muscle, and tendon aches and pains and troubles walking and using my joints in general. It makes me feel older than old and I often have to move very slowly and with limited range of motion. This side effect started almost immediately after starting on Arimidex toward the end of October but it wasn't until more than a month later that I finally figured out that problem wasn't related to the edema I'd been experiencing and that it was, in fact, a relatively common (30% of women experience this) side effect of the Arimidex! Amazing that the doctors know about this side effect but that it's not listed in any of the information that was given to me about the drug. So, for 6 weeks I was on Arimidex and now for 6 weeks I've been off of it ... 3 months of feeling like a decrepit, old thing!! I was told that my joints should be getting better by now but so far there have been no real improvements. I just saw an oncologist 3 days ago and I'm to try Tamoxifen instead of Armidex but I'm waiting another little while before I start it to see if my joints improve first.

My intention is to start back to work on a graduated schedule starting 4 weeks from now on Tuesday, February 16. I really hope my joints are moving normally by then and that my energy levels and strength improve considerably and quickly!

1 comment:

  1. I just found your blog while looking at another quilting related blog. I am 49 years old, an RN in rural Saskatchewan and 3.5 weeks post op from a lumpectomy and sentinel node biopsy. I have DCIS, stage 0, grade 2. I can't believe your Dr. not believing you when you said something isn't right and not checking a very obvious lump. I was fortunate - I had an annual physical last July and was told my left breast was dense but no lumps. I already had a letter from Breast Cancer Screening even though I won't be 50 until March. The screening mammogram bus was in town in August. Those 3 things together contributed to getting checked - otherwise I don't know when I would have - maybe not til I also felt a lump. I was called for a followup mammogram in Sept. - normal after a 1st mammo - then called again for a biopsy in October. I can't say enough about the wonderful care at the Breast Health Centre at SCH and my surgeon. Again, I feel very fortunate. I'm waiting now for my 6 week follow up with the surgeon and word from radiation oncology about treatments - I'll need 5 weeks of radiation to reduce my risk of recurrence by half. It sounds like you are doing okay now - that's great! If you want to chat, email me at


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