Thursday, August 28, 2008

have a good Labor Day weekend

Just wanted to say hope everyone has a great weekend.

We are working on the house and hosting a few parties. Tiger Lily has invited 8 of her best friends for a slumber party (I had a really weak moment) and my Post-Bac IRTA (fellow) got a movie deal and leaves next week so we are having a cookout Monday at the house.


No big news, I have a consult with a radiation oncologist next week--waaayy too many doctors if you ask me.


Remember to relax this weekend and enjoy the end of summer (and put away those white shoes little sister, even if you do live in AZ...).

Monday, August 25, 2008

Finally

So, not only did Tiger Lily and I have a blast at Bristol (and my driver came in 3rd) but I got the phone call from my oncologist.

My Recurrence Score is 8, for reference under 18 is considered low. My chances of having metastatic disease is around 6% which is pretty much where it was when I reported after my surgery (the test does not predict whether or not I will have breast cancer again just metastatic disease). The recommendation is radiation followed by tamoxifen for 5 years so NO CHEMO!!! A big cheer went up at our tail gate, my parents house, my sister's office and my laboratory on that announcement.

I talked to another oncologist who pretty much echoed what the first one said, he did say that if I looked around hard enough I could probably find an oncologist that would be happy to give me chemo but that in his opinion it would be a waste of time. He did recommend agressive follow up though so I will get to know the people who do my mamograms really well....

I don't know when my radiation will start, we are trying to negotiate for me to have it done at work so I don't have to leave everyday and deal with parking etc. It would be a nice luxury but I'm happy to do all the driving just to be able to start ASAP.

Hope everyone has a great week!

Wednesday, August 20, 2008

weekend plans

I just love it when things work out: Tiger Lily and I are off to the NASCAR race in Bristol today. She has always wanted to go and I was offered tickets at the last minute so I decided to seize the moment (or is it live for the moment?) and off we go. I figured I could sit around here and wait for the results or take the phone call (if it comes) while enjoying my daughter and obviously you can tell which choice won.

Hope everyone has a great weekend, luckily Fay turned southwest and we don't have to worry about rain!

Monday, August 18, 2008

Still waiting

Still nothing new to report--the company that does the genetic testing received my samples last Thursday and said it will take about 10-14 days from there before they will have results. Of course, the whole process for isolating the RNA, doing the PCR and analyzing the results in reality takes less than 2 days (I'm being generous here, my lab easily could do it in a day) but I am learning the meaning of the word patience.



I have gotten the name of another oncologist and will be getting a second opinion on my treatment. Although the oncologist I visited is one of the best in the DC area I am hesitant to base my treatment options on a cohort study of 700 patients. I am now a single parent and I need to make my decision knowing that I have to think about her and our future--I would hate to have to live through this again knowing that chemotherapy might have prevented it.



The swelling in my breast is finally going down and it is beginning to become very obvious that a woman with small breasts that has a 4.5 x 3.9 x 1.5 cm chunk cut out looks a little bit uneven. The incision runs along the entire left side but it is healing nicely. My lymph node site is still uncomfortable and I can usually feel pulling and stinging when I over do, I'm glad they only took one node!



I am on vacation this entire week, Tiger Lily and I are going to have some fun before school starts. I'm still living week to week but I know this week I have no doctor appointments or treatments planned so we're going to explore the DC area. Today we are off to the zoo to see the cheetahs and the pandas.



Have a great week.

Wednesday, August 13, 2008

Just saying hello

Just checking in to let everyone know I'm still in a holding pattern with regards to what my treatment is. I still have my fingers crossed that my recurrence score will be low and I will just have radiation. The hardest part of all of this is that I have to live my life in two week blocks which is frustrating for a person who likes to plan for months in advance.

As for my personal life, I have already started the healing process and I can now begin to exclusively think about curing my cancer. I am focusing on eating healthy, gaining weight (yes, I'm down to a size 2 again), getting my rest and taking care of Tiger Lily (she has had a few rough nights but she knows she is loved). I have a very important person to live and heal for.

As always, thank you to everyone for all the support, love and encouragement. I don't always feel like the amazing, strong, brave woman you all label me as but it feels good to think it.

Sunday, August 10, 2008

More about me

So, although this posting has nothing to do with breast cancer I did want to also let everyone know about some thing else that is going on in my life.

Most of you that have been around Ted and I for the past few years know that our marriage has been strained. In the spring Ted decided that he no longer wanted to be married to me and was ready to move on. He said that we had simply drifted apart and our friends and interests were just too different. I was utterly devastated by his decision. He agreed to stay in the house until August to finish it so I can sell it and move on. When I was diagnosed with breast cancer after some very hard discussions Ted said that he was would stay until I finished my treatments and help Tiger Lily and I through this.

I realized last weekend while I was in Iowa that when I asked him to put on hold the new life he had already started to live before I was diagnosed with cancer that this was something that was unfair to both of us. Although he has been supportive throughout this I can not continue to hope that things are different than what they are and so last week he moved in with his friend's father. We are now attempting to maintain a friendship after 20 years of marriage so that Tiger Lily knows how much she is loved. He has promised to help me through my treatments even though he won't be living with us and that he really will finish the house this fall. I believe him which is why the decision for him to leave, although difficult, was a necessary one so I can also begin to heal my soul.

Please understand that this is a very painful time for me and I apologize ahead of time if I don't answer phone calls or emails but I will heal and I will also survive this.

Friday, August 8, 2008

Doctor's visits

Long day for me today, but I did learn one very important lesson. When the doctor calls and all she says is "the margins were clear" you should ask a few more questions. I simply assumed that the original diagnosis of Grade 1, Stage 1 hadn't changed. Well--as I learned at the oncologist's office today my tumor was Grade 2, Stage 1.

Stage 1 simply means that the tumor has not spread to the lymph nodes. Research is begining to show that looking at lymph nodes may not be the best indicator of whether or not breast cancer is not going to spread to other organs.

For reference: Grade 1 cancer means that the cells still for the most part look like the original cells (duct cells in this case) they can still carry out some of the original functions and their growth is slow and somewhat controlled--sometimes this is called well differentiated. Grade 2 cancer means that the cells are beginning to lose the appearance of the original duct cells, they tend to grow quicker and they begin to not respond to growth control--these cells are moderately differentiated. Grade 3 means that cells have resorted to an almost primitive cell and these cancers tend to grow quickly and are more aggressive--they are called poorly differentiated.

The other thing that I never asked was how big the tumor was which plays a role in how patients are treated. It turns out that the there were several small tumors and a large tumor that was around 1.5cm.

When you plug in the grade and size of my cancer in the old treatment algorithm I would automatically receive chemotherapy since my chance of recurrence would be greater than 25%. Research in Europe and here in the States is beginning to showing that not all patients with greater than 1 cm, Grade 2 ductal carcinomas (breast cancer) need to be treated with chemotherapy and therefore the school of thought is to look more closely at the genetic profile of the tumors before automatically giving chemo. That's where the OncoType test that I talked about last week comes in. This test will give a chance of recurrence based on the genetic profile of my tumor and a low score means that I have about a 5% chance of having a recurrence in another organ (metastasis which means mortality) after radiation and 5yrs of tamoxifen. The test has about a 2 week turn around and after I get the results I will know whether or not I need chemo. Intermediate and high scores mean I will have at least 4 rounds of chemo (which means I might as well throw away my flat iron since my hair will come back even curlier).

So, the bottom line is I still don't know what is going to happen in the next few months but I'm keeping my fingers crossed that I get a low score and only have to undergo radiation and tamoxifen.

The surgeon loved how my incisions looked and is very happy with my recovery. For the most part I've reached the point where it's just uncomfortable when Tiger Lily hugs me really hard.

So, not the best news today but I still have hope that news will be good in the end.

Stay tuned and have a great weekend.

Tuesday, August 5, 2008

just checking in

Hi all, I'm back from Iowa and seeing Tiger Lily. We had a great time and I'm really glad I went to see her.

Nothing new to report, just waiting for Friday when I get to spend most of the day visiting doctors--yippee.

Have a good week.

Friday, August 1, 2008

science

I apologize for throwing out a few terms yesterday and not explaining. I am so used to speaking in code that sometimes I forget that not everyone has my codebook.

The screening that will be done on my tumor samples is called OncoType testing and the study I will be enrolled in is actually called the Tailor X study. There are full descriptions of both on the web through Google.

PCR is just a procedure used by scientists who want to look at what genes are expressed. Most people know about it from CSI since it is also used to determine if the suspect is really the suspect from samples they collect (such as hair or skin or blood). PCR can look at DNA (CSI) or it can look at RNA which then looks to see whether the genes that went bad and resulted in my cancer are the ones that usually mean it will come back. I do not carry the gene for breast cancer (BRCA) and until now I was considered very very low risk for breast cancer so the the screening will give me an extra level of comfort. It will also help my oncologist to determine what treatment I should have.



Tiger Lily and I are enjoying ourselves, we went and got manicures and lunch today and are planning on going out for dinner as well.



Have a great weekend everybody.