Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, May 01, 2014

Breast Cancer and choosing treatment

I walked into the oncology clinic and found it hard to resist the urge to turn and walk back out. Why is this even part of my vocabulary? To the left: the waiting room. To the right: patients in chairs getting their chemo. I checked in at the desk, filled out the necessary forms then buried my nose in my phone. I didn't want to look around. Everyone in the waiting room was sick, or waiting for someone who was sick. All these people have cancer? How many people around the world, on any given day, are having chemo?

I should not be here. I don't want to be here. Never in my life have I been in such a depressing waiting room. Wait, yes I have….lets not go there.

I normally have very low blood pressure, around 75/60 is pretty typical for me. But today? 130/90. It made me cry. Why was I crying? Because it was a sign I was letting cancer get to me and I hate that I'm letting it get to me. 

Today I wanted guidance.
I wanted to meet with my oncologist and be told "All your tests say X, and so the treatment will be ….". 

I did get guidance. My doctor was compassionate, caring and exceptionally patient, filling me with information and understanding of all the tests that have been done. 

We know I need to have my ovaries taken out. My cancer is estrogen +, which means estrogen is what feeds it. Most women can take estrogen blocking drugs, like Tamoxifen, to manage that. Unfortunately I can't take that medication. Instead I'll have my ovaries removed. But since there is still estrogen in the body I will take a different drug that is not as strong. I will also have to take drugs to improve my bone density since it causes depletion of calcium, especially being put into instant menopause. 

I am young for this type of cancer. I need to have genetic testing done to make sure I don't have BRCA 1 or 2, which are inherited forms of breast cancer. If I have either of the genes I will have a double mastectomy done. If not, I will leave them alone. Although my breasts are the only feature on me that I actually like, I'm not that attached to them. 

Now for my risk of recurrence. 

Whether or not chemo will affect my risk of recurrence is a coin toss. (read about the Oncotype test here) I'm in that 'intermediate' group of women who scientists don't really know if the benefits of chemo are worth it. The decision of whether or not to fill my body with poison is up to me. 

Because I can't take the estrogen blocker Tamoxifen, my risk of recurrence doubles, putting me somewhere around 25% chance of developing breast cancer again. 

1 in 4. 

Since my original odds were 1 in 8, just like the rest of the world, I have just doubled my risk from the general population. And since I don't really do very well when the odds are not in my favor, I want to treat this as aggressively as possible.

Dean and I have talked, and I have talked with my mom, and we all agree that if I don't do chemo and go on to develop cancer again down the road, I will wish I had done chemo. As it is, I will spend the rest of my life waiting to hear the words "You have cancer" again.

I'm pretty sure this is probably one of the most difficult decisions I've had to make in my life. 

And so it is decided I will start chemo next week. I'm lucky. So far I get to keep my breasts. 

We're dealing with it.


Ian & Ruby said...

Thinking of you as you begin chemo. I kept a diary of my feelings/significant changes, etc, and it helped me deal with subsequent rounds of chemo. For instance - I would know that on day (?) I would need to stay near the toilet, or on day (?) I would be unbearable to be near.... but it gave me the perspective that this would only last for x amount of time, and then it would feel differently. Good luck!

Tigger (aka Karyn) said...

A diary is a great idea. It helps you identify side effects and when they are likely to hit you and it gives you a reference point for discussions with your oncologist. For example, during my last chemo I found that I felt ok the day I had it and then the next day ok but tired, day 3 I was tired, aching and cranky and day 4 I was in pain, nauseous and hit by incredible fatigue. I could then plan so that I didn't make any important appointments on day 4 and could just lie around feeling like crap. I also got some extra meds to help me through my day 4.

I have been thinking about your situation and I am glad that you have decided to have chemo. From an anecdotal point of view I believe that you are much less likely to have a recurrence of cancer than the statistics indicate however having chemo does help reduce the possibility. As you say, if you did get a recurrence down the track you would kick yourself for not taking the opportunity for chemo.

Praying for you!

chicks3 said...

I am an ovarian cancer survivor. My 6 chemo treatments were much like Karyns. The steroids kept me feeling great for the rest of chemo day and the day after. Then all hell broke loose. After round two I knew what to expect and planned accordingly. I chose to do chemo in a hospital room where I could be alone rather than in a row of cancer patients. It was the right choice for me. You will get through this but your life will be changed. Best of wishes. Sue

Unknown said...


Now that sounds like a good plan. For my sister having the plan and knowing how it would roll over the six month was very helpful for her.

Just take it one session at a time. Just keep your focus on the next one! Thinking six months is a big leap in your mind right now, most especially when you are under so much stress.

Will you be offered a drug called Hercpetion? I've forgotten if that is an option for oestrogen positive patience.

There were chemo days when my sister would say she wanted to do a 'Thelma and Louise' and just drive to the most beautiful places in Ireland and sod the blood chemo session! I used to say we'll do that is for a chemo day!
Its perfectly normal to want to run and hide!

I will continue to read your blog and send you positivity energy, love, and prayers of support!

I've known you for many years Leah through your blog and from Downsyn. I have every faith you can do this!

Stay strong....

Love Lin ( LinMac from Dublin)