Showing posts with label oncotype. Show all posts
Showing posts with label oncotype. Show all posts

Tuesday, February 17, 2015

The Big Update

I'm having a hard time writing this update. So I am just going to paste in the email I sent to a few friends last night. I'm feeling different today, but I can't talk about it just yet. So this will have to do for now. Happy snow day. Xoxo

Hi all--

I'll cut to the chase: I start chemo next week. I feel... Okay. Alternating between fine and angry. Did some angry sewing earlier (a baby quilt--hope it doesn't pass on to the baby!). Drank some wine. Ate some chocolate. It helps a little.

The cancer is stage 1 (0-4 scale; my type starts at 1 because it is considered invasive so stage 1 is the best I could hope for), so I am starting with a great prognosis. They now do personalized testing to determine risk of recurrence and responsiveness to additional treatment. This is the testing I've been waiting on since surgery.

I scored 25 on the oncotype test (read more here: http://www.breastcancer.org/symptoms/testing/types/oncotype_dx), which is right in the middle of the "intermediate" (ambiguous) range. So I have a 16% chance of cancer recurring (elsewhere) if I do tamoxifen (standard, hormonal therapy for my kind of cancer) alone, or I can add chemo and reduce the risk to maybe 10-11%. In other words, if i just do tamoxifen, there's an 84% chance I will be cancer free in 10 years. If I add chemo, 90% chance I'll be cancer free. It doesn't sound like much of a difference, but it is much easier to treat and "cure" it now than to wait and treat a cancer that may develop. Because once it is elsewhere... You know the rest. (And while it wasn't in my lymph nodes, there's no guarantee they just didn't see a cell...)

As Husband quipped, it's like going from a B to an A-. Which was both funny and helpful because I am definitely the person who would go for the A- over a B! Heck, let's try for the A.

Anyway, the doctor offered us time to consider, another mtg to discuss, but I said let's just do it. Get it done! I asked if he would encourage his daughter to do it and he said, I think sincerely, yes. So I had blood drawn today and next week I'll have a port put in and then next Thursday I start. Assuming my plastic surgeon clears me (but we assume so because I am 4weeks post surgery this Wednesday).

We met the social worker. She gave us books for the boys which we probably won't use; "mommy has cancer" is not a sentence I want to say out loud. Mommy needs medicine and will have a bald head, fine. But I want to laugh about how funny that is. I am not dying, I don't feel sick. And they are LITTLE! Too little. So we are going to normalize it as much as possible. 

We saw the infusion room which is a big room with chairs around the perimeter. The infusions take @3-4 hours! The doctor said how I react to the first one will likely be how I react to future infusions. So that's good to know. 

I will have 4 infusions -- the least they do. There is roughly three weeks in between each one so it'll be about 12 weeks until I'm done. 

I don't know when I'll lose my hair. A few weeks in, I assume. I get a prescription for a good wig. Bald for my 40th! 

After chemo I will start the tamoxifen and take it until my ovaries and tubes come out. (Most women take it 5-10 years but I won't need it if I have no ovaries producing hormones.)

Thanks for all of your calls, visits, letters, emails, food, carpooling, babysitting, etc. I am so grateful. Thanks, as well, for treating me like a normal person. I won't make it through this if we can't laugh, if we can't have fun. My family won't make it through if we don't laugh and have fun! I don't want to cry over my lost hair (although I probably will). I do want to yell about it, and then I want to laugh about it. So you better be ready to crack some jokes and try on some wigs with me!

Love, c


Saturday, February 14, 2015

Surviving Cruella -- Update/Recap

Post Shower Selfie!

Happy Valentine's Day! Today is a great day. Always good to start with good news, right? I took my FIRST SHOWER IN 3 1/2 WEEKS (ahhhhh), and I'm going sewing machine shopping with my BFF today! I cannot wait. I am going to give 3-4 Janome machines a test run. Hospital bills be damned, I am buying a fancy pants machine. Happy early birthday to me!

There's a lot happening over here in cancer land, and Monday is going to be a big day*. I've been thinking about everything that has happened over the last couple of months and thought I'd lay out the timeline. So let's recap, shall we?

4/12/83 -- The world loses a beautiful, witty, loving soul, mother, daughter and friend. My first mother, Christine Elaine, succumbs to breast cancer at 37 years young.
December 2013 -- I finally ask for and receive a referral for a mammogram. I am 38.
October 2014 -- I have my first mammogram at the GW Breast Center. It is quick and easy!
November 2014 -- I return for follow up imaging, spend four hours at the Center, and learn I have a lump that needs to be biopsied.
December 9, 2014 -- I have a needle core biopsy. The radiologist expresses concern and offers that she will rush the results.
December 12, 2014 -- Husband and I return to the Center and hear for the first time that I have invasive ductal carcinoma in the right breast. The tumor is tiny but must be removed either through lumpectomy or mastectomy before it spreads. We name it Cruella De Vil.
December 15, 2014 -- MRI confirms the tumor, does not show lymph node involvement, and finds a second, small, ambiguous growth to be biopsied if not removed via mastectomy. I plan for genetic testing to help me decide lumpectomy or mastectomy.

(Holidays, merry, merry)

January 2, 2015 -- Genetic test results confirm I carry the BRCA2 gene mutation associated with a higher risk of breast and ovarian cancers. I learn I will have to have my ovaries and tubes removed, in addition to removing/treating the breast cancer. I am relieved and decide on a double mastectomy.
January 21, 2015 -- I have the double mastectomy surgery; no implants but the plastic surgeon saved my nipples. My lymph nodes are clear -- the cancer is stage 1, hooray! I feel sore, nauseous, overwhelmed, and optimistic. The Village kicks into high gear with visits, flowers, food, gifts, and lots of love and support. 

(recovery, recovery, recovery)

February 5, 2015 -- We meet with a high-risk oncologist about my BRCA2 status; she says "a short course -- 12 weeks --  of chemotherapy" is a distinct possibility because of my "young" age. I am completely confused by her description of how the oncotype test works. 12 weeks of chemo sounds like an eternity. Treating cancer when my breasts are gone and lymph nodes are clear seems excessive, but I agree to reserve judgement until we know what we are talking about. 
February 7, 2015 -- Percocet withdrawal knocks me on my butt. I cave and re-dose, vow to follow the doctor's slow withdrawal plan.
NEW: February 12, 2015 -- The second/final drain is removed and breast expansion begins! I haven't showered in 3 1/2 weeks; I plan an epic shower for Saturday, 2/14.
NEW: February 13, 2015 -- The oncotype results are finally in! The patient navigator can only tell me I am "kind of in the middle" and will need to discuss with the oncologist. Chemotherapy seems even more likely. I again try and fail at Percocet withdrawal; slow down even more. 

Now that we're current, here's a look at what's next. 
*February 16, 2015 -- Husband and I are going in for our first meeting with the oncologist who will treat me (as opposed to the high-risk oncologist who helps me evaluate my overall cancer risk and planing vein my BRCA2 carrier status). We will receive the actual oncotype test result, discuss what it means and what my treatment options are. 
February 17, 2015 -- My first day back to the office in a month!

There is still a lot TBD for 2015. 
Under Construction -- my new boobs!
TBD -- The actual treatment plan and implementation.
TBD -- The oopherectomy to remove my ovaries and tubes.

But one thing is certain: I am kicking Cruella's asssss and we're going to celebrate the heck out of it in April.