Wednesday, September 10, 2008

My story - part 2 (you have cancer, now what)

How did I find out that I have breast cancer? Well, read on . . .

In January I noticed that my bra was not fitting anymore on the right side. I knew that the dryer didn’t shrink just half of my bras, so obviously my breast was growing - but why only one? Maybe it was stress. I called Dr. O back and told him what was going on and that I was ready for the biopsy. I saw him the next week, he told me that the unusual growing could be hormonal and that seeing an endocrinologist might be helpful once the results of the biopsy come back. He also suggested that since I had never had a mammogram I get one done before the biopsy. We scheduled it for January 31st and the biopsy for February 8th.

The day of the biopsy he told me the results of the mammogram, “suspect multiple cysts in the right breast”. Ok I’m thinking, cysts are not scary, I can deal with that, just drain them. When I woke up in recovery and Dr. O came to talk with me there was a very different look on his face. He told me that it definitely was not a cyst because it was hard as a rock and to be extra cautious he took a large piece of it for biopsy. He made me an appointment for that next Tuesday to go over the results.

February 12th, results day. I remember this day so clearly. Aside from some soreness from the biopsy I was feeling pretty good. I just had an awesome weekend, we got our profit sharing checks at work and I was looking forward to planning a snowboard trip out west. My appointment was first thing in the morning so I got in to see the doctor right away. I knew the moment I walked in because he had that same look on his face. “I wish I had better news for you”, what? Wait a minute; you’re supposed to tell me that everything was ok, just like you were saying all along! We spoke for about 20 minutes all the while tears streaming down my face and thoughts of my mother bouncing around my head. He kept telling me that he’s never had a case like this and didn't quite know what to say. His office had already made me an appointment to see an oncologist in Springfield the next day, Dr. K. What a coincidence, she was my mother’s doctor! Before leaving his office, the nurse kept offering to have someone drive me home. Nope, I’m fine – I just need to be alone. I sat in my car for a while thinking what now, how do I tell this to my family and friends. Most of my friends knew about my biopsy and I knew they would be wondering, I didn’t really want to talk to anyone so I sent out a mass text: “Bad news, its cancer”, then I called work and let them know that I wouldn’t be in for a few days. Wow, 2 days before Valentines Day...this one's going to be a great one! (insert sarcasm here)

A lot of cancer survivors will tell you about a freak out moment they had when they were given the news. Strangely, I never had one of those. It was just like, Ok I have cancer, how do I get rid of it, what do I need to do? Telling my dad was the worst! He asked me how the appointment went and all I could do was shake my head and cry. He went with me to my appointment the next day. Dr. K didn’t immediately recognize me when she walked into the exam room, I had only met her a few times at my mother’s appointments. Once she made the connection she was beyond words. We spoke for about an hour and after an exam she suggested a series of more tests including CT scan of chest/abdomen, MUGA scan, MRI of breasts, have a fine needle aspiration of lymph nodes to see if it had spread (which it had), get a tumor marker and port-a-cath inserted and genetic testing to see if I carry the BRCA1/BRCA2 gene mutations (considering my mom’s history). Plan of action: chemo – 8 rounds of AC/T every 14 days plus 1 year of weekly Herceptin, surgery – most likely mastectomy due to the size of the tumor (9.2 cm indicated by the MRI, and that’s after the 1.5 cm they removed for the biopsy!), radiation – 5x a week for 6-7 weeks and 5 years of hormone therapy (an estrogen blocker since my tumor was estrogen receptor positive).

On top of all that I was told that chemo might destroy my ovaries and that I might want to think about getting them removed depending on the results of the genetic testing. I don’t have any children so what about that? I didn't get the best answer: probably unlikely – an estrogen spike while pregnant would increase the chance of recurrence. What about freezing my eggs? Not enough time, we need to start chemo soon and the hormones used to harvest eggs could cause the cancer to spread. F@#k!! Dr. K was great, she took the time to make sure I was clear on everything that she had said and even gave me her email and cell number in case I had any concerns that couldn’t wait until office hours. I left the office thinking, great not only do I have cancer and may have to lose my breast, now I have to think about my hypothetical children too! Do I even want kids? Do I want my ovaries removed? These are things I wasn't prepared to be thinking about.

February was a blur. The next few weeks were filled with appointments, scans and 2nd opinions. I traveled down to Boston to go see the best: the doctors at Dana-Farber. They pretty much said the same that Dr. K had, only they suggested getting a bone scan and head CT plus the chemo drugs and regiment were different: 4 rounds of Taxotere and Carboplatin every 21 days plus Herceptin weekly, then surgery, then 4 more rounds chemo. On my way back home from Boston I called Dr. K and went over what the doctors had said. I asked if she would consider collaborating with them about the chemo and she agreed to call them the next day; I wanted to get treated closer to home and I was comfortable with her. She spoke with them and a few other doctors at Baystate; ultimately we decided on the drugs that Dana-Farber suggested with 6 rounds up front and no chemo after surgery.

Stay tuned for my chemo experience, to be in a later post . . .

Friday, September 5, 2008

My story - part 1 (background)

My story is a long one, and my treatment isn't even over yet!! So, I'll be posting in segments rather than one huge article.

I was diagnosed with breast cancer at age 31, Invasive Ductal Carcinoma stage IIIA, ER+/PR-/Her2+. To accurately tell my story I have to first bring you back 2 years. I had a breast reduction in January 2006. For medical reasons I went from a cup size DD down to a C. After the surgery I had a series of follow-up appointments which were a chore in themselves. I live in MA and had my surgery in NH, 1.5 hrs away from home. Winter driving in New England can be quite exciting!! The surgery went well by medical standards, but if anyone has ever had a breast reduction, you know that your breasts are quite hard after the surgery, VERY ugly and misshapen. I asked if this was normal and I was told by my medical team that with time the tissue would relax and become softer and settle into a more natural shape. I was told to “massage” my breasts frequently to break down any scar tissue. Um, ok.

About 4 months after the surgery my left breast was just about back to “normal” but there was still a large area in my right breast that was still hard. By large I mean it was about 4" from top to bottom between the 7 and 11 o'clock positions. I called my plastic surgeon, Dr. T, to ask if this was normal. She scheduled an appointment for me to go back and see her. “Yes, that’s normal. It can take up to a year after surgery for breast tissue to settle.” Ok, nothing to worry about. She told me to check back in a year if nothing changed.

Fast forward one year - still no change. I called the office back and they told me that Dr. T was leaving the hospital and starting a practice of her own in MA. What luck, now she’s only 30 minutes from me, no 3 hr round trip drive needed! I had to wait a few more months to get an appointment as the practice was not open yet. March 2007, finally get in to see her. She advises me that the area is probably just scar tissue or fibrous breast tissue, but just to be sure she wants me to see a general surgeon. By this time I’m thinking, ok I just have a lumpy boob from surgery, small price to pay for not having anymore neck or back pain as a result from my previously large breasts.

It was October by the time I was able to see a general surgeon, work and life kept getting in the way. In July we found out that after 5 years in remission my mother’s ovarian cancer had returned, so I kept rescheduling my appointments and put her care first. When I finally got to see the surgeon, Dr. O, he backed up what Dr. T had been telling me…fibrous breast tissue or scar tissue as a result of the reduction; it was highly unlikely that it was malignant. He added that the only way to be sure was to do a biopsy but felt like that was invasive and not necessary, but ultimately it was up to me. Not too keen on the idea of being cut open yet again I opted not to have the biopsy. Two doctors have now told me that it’s nothing to worry about, case closed. My mother wanted me to have the biopsy but I was satisfied that both doctors said the same thing, so I told her not to worry.

In December my mother lost her battle with ovarian cancer at the age of 56. The last months were hell for her, she was constantly sick from the chemo and rapidly losing weight. The doctors were not able to administer the chemo on any regular schedule because of low blood counts and so on, so that ultimately gave time for the cancer to spread throughout her entire abdomen. The tumors were so large that they were obstructing her intestines and she decided that enough was enough; she was done with being in constant pain, it was a living hell. She passed on December 9th, two weeks after stopping treatment.

That's about all the time I have for today and feel that this is a good stopping point. I still have not dealt with the loss of my mother because cancer didn't allow me to . . . which you will read in a later post.