Tuesday, August 30, 2011

MRI photos

Due to a slight mix up I ended up having to go to LC today to pick up a CD of my images (mammogram, ultrasound & MRI). Of course I asked if I'd be able to look at the pictures on my home computer and they said yes.   During my MRI they put contrasting dye in my blood. The results were that the cancer in the breast needs more blood so it takes more dye.  I'm thinking the dye is blue in these pictures.

 The top photo says 9.7 cm on it.  When we met with LC they told me that at it's largest point they thought my cancer was almost 10 cm. I read on a breast cancer website that if the cancer is larger than 5 cm they recommend a mastectomy because a lumpectomy that size would remove so much of the breast that the person would be disfigured.  Mine is double that size! 
I think it might be good that I looked at these because I can see now that something is wrong. Obviously, I can feel that something is wrong all the time but this is more proof.
This sucks!

Saturday, August 27, 2011

Great beach day

I vaguely remember when I started this blog, I talked about having 3 day weekends. And while that is technically true, in that I don't go to the office on Fridays, I often do work from home a few hours each Friday. Especially this summer as work projects, conference calls and playing catch up for doctors appts have led to many a Friday sitting in front of my laptop.

Well, now I have cancer and I say... screw that! Yesterday, we hit the beach! Cassidy, my mom, my sister and nephews enjoying sun & sand. We had a great day! Big waves and talk of Hurricane Irene coming to New England.  Of course the adults talked about treatment and reconstruction and what-ifs but in between we talked about burying Anthony.
and how Cassidy pooped in her bathing suit / swim diaper. Confirming for me that I don't understand how a bikini bottom doubles as a diaper as you have to pick the poop balls out and get rid of them! We talked about school being cancelled already for Monday and broken boogie boards. It was a great day.

Wednesday, August 24, 2011

Reconstruction options

When we met with LC Monday, they didn’t have a plastic surgeon available to meet with us. The general surgeon told us that they offer three types of reconstruction.
1.      An implant.  This would require two surgeries. After the mastectomy they would insert a tissue expander behind the pectoral muscle which would be inflated over a period of 4 to 6 months. After that its outpatient surgery to remove the tissue expander and put in the actual implant. The doctor indicated this was easiest option as the initial surgery would be relatively easy going this route with a short recovery (two weeks). But you have to have a 2nd surgery it’s probably similar down time added up? Also the 4 to 6 months is dependent on how well you tolerate pain because the tissue expanders hurt.
b.      I’m not crazy about having an implant. They don’t last forever, though it’s difficult to figure out how long they do last. 10 to 20 years? So if I live until I’m 90 and they last 15 years, that’s at least two more surgeries. Does insurance cover replacing it years later or will that be on my dime? Also, in January 2011 FDA reported a possible link between both saline and silicone breast implants and a very rare form of lymphoma -- anaplastic large-cell lymphoma (ALCL) -- in the tissue near the implant.

2.      Latissimus Dorsi Flap. They move a muscle from your back and that muscle holds the breast implant. So I’d wake up with a new boob. Longer recovery and scars on back. Also the muscle on your back is gone forever. The doctor said if I was left handed this would be his recommendation but because I’m right handed…  I’d lose strength on that side.  I’m curious to talk to a plastic surgeon about this – how much strength do you lose? How does this really impact you the rest of your life? and still… it’s an implant.

3.      TRAM Flap – They remove an abdominal muscle and fat from the same side (right) and build you a new breast (no implant). I like this idea best because there is no implant but downside is – that abdominal muscle is gone for good.  I’m not sure how that would impact my life in the future. Also a big tummy scar. And I’m not sure if I have enough tummy fat to make a nice C cup.  A plastic surgeon would need to decide so… this might not even be an option for me.

So two involve implants, two involve moving muscles from other parts of my body and one, I don’t know is an option for me until I see a plastic surgeon. Now let’s add more decisions.
·         If genetic testing comes back that I am positive for the breast cancer gene – Bill and I agree that I will have a double mastectomy. Then implants will have to be the way to go and I’d probably just do your basic implant as I wouldn’t want my back muscles gone from both sides.
·         The doctor suggested, and I thought he was nuts at the time, that lots of younger women, opt to have a double mastectomy, regardless of the results of genetic testing. They do this to reduce the risk of getting cancer in the remaining breast and to have both breasts be the same (i.e. implants).  While at first this seemed crazy to me… if I can’t have the TRAM and I have to get implants… maybe it doesn’t seem so crazy?

And I'm not even thinking about the nipple reconstruction after all of that!

Big decisions!  And I can barely decide what t-shirt to wear and what to cook for dinner!  I’m hoping that talking with a plastic surgeon will make this easier.  My appointment with Dana Farber is Thursday September 1st.  We are meeting with a plastic surgeon first at a different location, then the breast surgeon and oncology. I expect we'll make a decision that day on where I'll go for treatment.

This slideshow - kind of scares the crap out of me.

Any thoughts, opinions, links to websites are all welcome.

Monday, August 22, 2011

Bill says we got great news

Today we had our doctor’s appointment at LC to discuss my diagnosis and treatment plan. First they reviewed all my test results so far:
·         7/21 Mammogram showed micro-calcifications in varied sizes & patterns. Some clumped together, some not. Very diffuse through the right breast. Ultrasound same day showed no distinguishable lump.
·         8/3 MRI showed enhancement in area of calcifications. This means the dye they put in my blood stream lit up like a Christmas tree on the MRI where the calcifications are.
·         8/17 Two biopsies. Both sites biopsied were determined to be ductal carcinoma in situ (DCIS), high grade, hormone receptive = positive.

Then the plan: because the DCIS is over so much of the breast, a lumpectomy would leave me disfigured and it would be difficult for them to know they got it all since the calcifications are so tiny. So the only way to be sure to remove it all is a mastectomy. Because of my young age (that’s right, I’m young!) and the large size of the area with DCIS (what they biopsied was non-invasive but that’s no guarantee it all is) they will also perform a sentinel node biopsy, which removes 1 to 3 lymph nodes and biopsies them. There is a 15% chance the lymph nodes would be positive for cancer (meaning there was indeed invasive DCIS in there somewhere).

For the treatment plan we discussed today we’re assuming my lymph nodes will be negative. A lot would change treatment wise if they’re positive so… we’re going to think positive… wait, I mean…  uhhhhh  we're thinking positive that the nodes are negative!
So assuming lymph nodes = negative for cancer is pretty good news.  They said I can have reconstruction right away (I’ll post more on this another day – there are some BIG decisions to make about that and we didn’t meet with a plastic surgeon). I won’t need radiation! Chemo is totally not necessary J  and Tamoxifen (drug recommended if you are hormone receptive positive) would be my choice to possibly reduce the chance of getting cancer on the left (no thanks, menopausal side effects…   I’ll risk it).

The next step would be genetic counseling (I am YOUNG to have this and I have a daughter so I’d like to know if I am BRCA positive) and meet with a plastic surgeon. Before I book appointments – I need to get that second opinion and decide where I’m going to get treatment. DF is working on getting some preliminary data from LC and I expect them to call me tomorrow with an appointment time. I believe it’ll likely be next week as the tissue samples and other test results need to be sent to them, as they will have their pathologists look at the biopsy samples and kind of start from scratch from the films and slides.

I feel overwhelmed. My mind is spinning. Bill feels like we got great news today (no radiation! reconstruction right away!). And it is good news but… great news to me would’ve been “We made a horrible mistake and have a nice day!” I’m still wrapping my head around all this. Even now, it just seems unbelievable to me.

Yesterday’s BBQ was good. I won’t post pictures of other people’s kids but here is Cassidy in the old kiddie pool and chilling in her chair from Saturday.

Sunday, August 21, 2011

More stress than I've ever felt in my life

Awhile back we had invited the in laws over for a BBQ. Bill asked me Friday if I wanted to cancel and I said no. So we invited a good friend of Bill's, his girlfriend and daughter to join us too. I don't want cancer or the treatment of it, to interfere (too much) with our lives. I want to have good times.

But now that the day is here...   I'm really nervous about tomorrows appointment at the hospital to go over the biopsy results and the treatment plan. I'm nervous about going to work Tuesday. I don't feel like I'm in a good place emotionally. Which isn't a good day to be a hostess.  So now I'm stressed about today too.  I'm sure at the end of the day I'll feel silly for thinking/posting any of this because I'm sure the day will be good and fun.

maybe it's silly but... I haven't seen anyone but Bill and my mom since I found out. Sure I've talked to girlfriends on the phone but... I feel like its going to be different face to face and I'm not sure I'm ready.
I said to Bill the night we got the diagnosis, I've had a charmed life. Until earlier this year all my grandparents were alive and healthy (Grandpa H. passed in June at 92). My family has never really dealt with serious illness or any kind of tragedy. The saddest things I've ever been through has been my pets illnesses and deaths.  I'm unprepared on how to deal with this.  While I can joke with girlfriends about flashing, wet T-shirt contests and plaster-of-paris boob impressions... inside I feel so scared and in shock.  How did this happen?

Saturday, August 20, 2011

I have breast cancer

The summer has been busy. We had an oceanside vacation, lots of work travel, lots of weekends away. Somehow during all that busyness I noticed something weird in my right breast and headed to the doctors to get it checked out (only after being yelled at by a friend and a sister that ignoring it wasn't an option and it probably wouldn't go away on its own).  Then squeezed in lots more visits to the doctor for my first ever mammogram (I'm only 39), boob ultrasound, MRI and finally two biopsies. The doctor called the day after the biopsy - ductal carcinoma in situ. 
It's been two days since the call.
I'm still in shock.
We have an appointment Monday with the treatment team. The gave me the heads up on the phone that they're recommending a mastectomy. Wow!  We'll get a second opinion. I think before you let someone cut off part of you that seems like a good thing to do.
We're having a BBQ on Sunday so this is a busy weekend too. some pictures from our summer below.

Chicago really is windy!