Post MDA Visit w/Dr. H

So I've recycled a photo that I've posted earlier this year of Dr. H.  This is my oncologist that came to see me the day after I was diagnosed on her day off.  She encouraged me to see a doc at MD Anderson because I asked her six months ago during my last check up with her about fertility.  She wanted me to see if the MDA folks would find it safe for me or give me a green light if that was the path that was chosen for me.  

Today we checked with my insurance company and thankfully they will cover the P53 test.  Step 1 check!  Its not a standard test so no one really knows when the results will come in but I can only assume it will be about 10-14 days.

Step 2 will be to see Dr. Neyman to see if we can tell how my ovaries are doing in terms of egg production.

The outcomes of Step 1 and 2 are super important but so is Step 3, if not the most important:

Step 3 will be to find my life partner.  Regardless of step 1 and 2, my hopes and dreams would be to find my life partner.  I have a small window of opportunity to possibly conceive naturally BUT I also know that this cannot be rushed and this is a journey that I will not do on my own.  Many single moms are rockstars and Dr. H told me that "Aren't we all single moms?" but it's not something I would choose to do on my own from the get go.  

I thought this year would be the first year not to reach my deductible but I think I'll hit it by the time I finish up  w/ Dr. Neyman.  More to come!

Live Your Life

9/17/2012 I finally made it to MD Anderson

Finally I got to Houston!  The roads that lead to MDA was rather bumpy.  I had a difficult time having my case manager return my calls.  Okay, the original case manager never returned my call after several voice messages.  It got to the point that MDA closed my case because they never heard back from me.  So you can see how upset I was.  Thankfully I was not a newly diagnosed patient but was appalled that a world renown center would treat a cancer patient like that.  

Anyway, I got my case reopened thanks to an email to my oncology nurse.  I was able to switch case managers and to tell them my story so it didn't happen to anyone after me.  Needless to say, things went smoothly from that point on.  So smoothly that I've been highly impressed by MDA besides that incident.

I got to spend the weekend with Blanca.  I didn't get in until that afternoon because there was a benefit for one of our ladies that passed last month.  The benefit was amazing and raised about $4000.  I had a great time hanging out and catching up with Blanca and her daughter Izzy who is cute as a button.

Fast forward to this morning.  I got to MDA early to make sure I found it correctly.  Besides, I haven't met my deductible yet for this year so this visit was going to cost me about $500 so I didn't want to be late for it!  The directions they gave me was great and so was my GPS.  Information center was great and before I knew it I arrived!  Some photos as proof.

Fancy, this is how an actual cancer center works...especially a world renown  one.

From start of registration to the nurse that walked me out was an amazing experience.  Everyone was courteous and prompt.  It was only Dr. Litton the breast, fertility and genetics specialist that I had to wait for about ten minutes.  Of course, I had to undress from the waist up and opening to the front.  Robe is below and so is the funny story of the sign I forgot to snap a photo of:

I forgot to take the photo of a sign to NOT take home the robes but they can be purchased to  take home on level 2.  Not sure why someone would want a souvenir of a robe from a cancer center but what do I know?  It was soft enough but still...

Anyway, I met with the nurse and went over my history as well as why I made my way to MDA after almost 7 years of diagnosis.  Dr. Litton came in with a newbie and started spewing my stats and everything I went over with the nurse without ever looking at notes or my chart of my files.  Damn!  I was impressed!  She was also warm and compassionate and definitely knew her stuff.

In a nut shell:

She doesn't think I am BRCA+ but would like me to consider the BART or P53 test.  I've heard of P53 and remember asking Dr. H about it long time ago but forgot what was said about it.  Anyway, she would rather me do the P53 over BART since I'm HER2+ and BRCA is usually TNBC.

Studies shows it's safe for breast cancer patients and ER+ ladies to have babies 2-4 years after treatment.  (Or may have been diagnosis.  Darn, forgot.  But regardless I'll fall into that guidelines.)  Of course there are not guarantees but she doesn't see why I shouldn't if I wanted to have a baby.

She does not believe in follow up scans or tumor markers.  In my case, she would want to run a complete breast and abdomen/pelvic CT scan to ensure there isn't a micrometasis anywhere prior to getting pregnant.  I told her this was not immediate since I haven't established my life partner so she said to have it done before I was serious about this.  Of course this is pending P53 results.

She feels 5 yrs of Tamoxifen is enough and that no more is needed nor is an oopherectomy!

I have a small window of opportunity where my eggs would be viable and producing but we know once women hit 30's that it drops significantly and even more so since I had chemo.  So my initial thinking that I have up to 5 years might be wrong.  We didn't establish the numbers in years but I am probably producing less eggs that an average 35 year old.

My body is forever changed.  I need to consume about 75% of the calories I consumed prior to treatment and for the rest of my life.  I guess I shouldn't beat myself over the head over those last 10 lbs.

Basically she answer ALL of my questions and would have answer more if I thought of more.  I seriously was aiming for 25 minutes with her.  I was in there with her for about 45 minutes.  I was with the nurse for about 10-15 minutes.  Needless to stay, I'm a happy camper.

As Dr. Litton left the room she told me, "Live your life."  With that, I'm back in Austin and am enjoying a cocktail.  I have an appointment with Dr. H next Monday to discuss everything and see how much this P53 test costs.  If that is all clear and my CT scans are clear and I find my partner in crime I have a green light.  I also feel good about keeping my ovaries at this point in time unless more data comes out.

Guess it's time for me to LIVE MY LIFE!  Cheers! 

Fast Down and Dirty on Babies after Breast Cancer

I thought this was well written and to the point.  I have my appointment with MD Anderson later this month and thought this came in a timely manner.  I'm hoping my appointment with them will be insightful rather than a short 15 minutes of, "You're healthy.  Keep up what you're doing and just go for it!  See ya!"  

Babies After Breast Cancer: What are the Options?

August 26, 2012
by Amy Jacobson, RN NP-BC UCLA LIVESTRONGTM Survivorship Center of Excellence

In an ideal world, along with chemotherapy classes, newly diagnosed breast cancer patients of reproductive age would receive counseling on how their treatment may negatively affect their ability to have children and what options are available to them to preserve it. Unfortunately, research shows this may not be the case, as a recently published study of young female cancer survivors in California indicates that only about 12% remembered receiving counseling about how to preserve their fertility¹.

What are the options available to breast cancer survivors who were unable to take steps to preserve their fertility at the time of diagnosis? The answer to this question depends on the treatment received. For example, Ductal Carcinoma in Situ (DCIS) treated with surgery and radiation will likely have no affect on a survivor’s ability to conceive and carry a pregnancy. However, if a woman is taking Tamoxifen pregnancy is contraindicated due to the risk for birth defects.  A woman who received chemotherapy that affects the ovaries (such as Cyclophosphamide or Adriamycin) and becomes prematurely menopausal may be unable to have a biological child, but could carry a pregnancy to term through fertilization and implantation of a donor egg (if she is not taking Tamoxifen or other endocrine therapy). If she doesn’t have a partner, she could utilize donor sperm. Reproductive specialists throughout the country offer women the opportunity to choose egg and sperm donors based on their physical characteristics, educational accomplishments and even what they enjoy doing in their spare time. Adoption is also a possibility, through private agencies, international channels and foster care.

But all of these options come with a cost, both financial and emotional, that a survivor may not be aware of. Most health insurance plans do not cover fertility treatments (even for cancer patients), and a donor pregnancy may cost more than $10,000. Private adoptions often include legal fees and medical coverage for the expectant mother, and the mother has the right to withdraw her consent to give up her child at any time. And, cancer survivors may carry the extra burden of fears of cancer recurrence.

So, it is important for the survivor who wants to start a family to not go it alone. Googling late at night can be overwhelming, and reading message boards filled with horror stories and secondhand information can also result in emotional overload. Establishing support with a qualified counselor or clergyperson for the journey ahead is critical. Finding a reputable reproductive specialist is also important, particularly one who has experience with women who have been through cancer treatment. Completing a realistic budget before proceeding is critical, so that emotions don’t dictate finances.

A good place to start is myoncofertility.org, which offers quality patient resources on fertility after cancer. They also have a toll free help line at (866) 708-FERT (3378) to answer questions about fertility after cancer.  Another great resource is Fertile Action (www.fertileaction.org), a non-profit organization started by breast cancer survivor Alice Crisci to assist with decreasing some of the financial burden associated with fertility preservation/treatments for both the newly diagnosed and post-treatment patient. Fertile Hope also has a searchable resource guide that includes adoption agencies, mental health professionals and surrogacy agencies on their website at www.fertilehope.org.

UCLA LIVESTRONG Survivorship Center of Excellence 

References:

1. Niemasik, EE, Letourneau, J., Dohan, D., Katz, A., Melisko, M., Rugo, H. & Rosen, M. (2012) Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. Journal of Cancer Survivorship. doi: 10.1007/s11764-012-0227-9