Wednesday, December 14, 2011

What I have learned from my mom's breast cancer...

(This is a medical post and not a philosophical one just FYI)
Well as many of you know my mom was diagnosed with Stage 3 breast cancer about 4 months ago. It was found on a routine annual mammogram on the left side. Initially she was told that the lump appeared to be pretty small and that they could likely just do a lumpectomy with radiation. (as my sister said, "they made cancer sound like Christmas). Well as she went in for further testing, the MRI with a dye study revealed cancer in the right breast as well. Her previous mammogram and ultrasound were negative and not until they did the MRI did they find the abnormal tissue. I say this because she is living proof that you could be walking around with breast cancer right now and think you didn't have it b/c of the imaging techniques used. If you're over 50 I would request to have the MRI done if your insurance will cover it as it's the most specific/sensitive test they have.
The cancer in both breasts was the game changer and one of her oncologists (she's got THREE b/c they all specialize in different things) recommended a double masectomy. So about 3 weeks ago she had surgery to remove both breasts and the associated lymph nodes in each arm. The histopathology of the lymph nodes was clean so they then told her that she likely wouldn't need follow up chemotherapy or radiation but instead would just need to take some pill for the next 5 years and get scanned every 6 months. Just to be sure they recommended she do something called Onco-typing. Now after initially getting her hopes up of no chemo she just heard today that there's a 36% chance of recurrance in the lungs/brain/bones, w/o chemo because of the onco-typing results.
So yet another disappointment. This went from, oh you'll just have a lumpectomy with radiation to oops, well now you'll need a double masectomy but no chemo, to well.. actually we need to do chemo. I am posting about this because I'm furious. Since the first time my mom told me about her cancer I have been saying... how can they say this or that w/o the tests to back it up? I may be a veterinarian but we see mammary cancer ALL the time and we can't just run to an oncologist, we have to do everything - diagnose it, surgically remove it, then do chemo/radiation whatever is required. I feel that because there are so many subspecialties w/in specialties like oncology the fact that it took three months just for her to even have surgery is atrocious and the fact that they keep sugar coating everything and giving her only the best outcome has constantly set her up for disappointment and grief. She's grieving over the life she thought she'd be able to lead only to have it ripped away from her at different doctor's offices.
I'm sure she'll be fine and the surgery went well and she's healing nicely but I just know from my perspective as a doctor that all this back and forth and lack of communication b/w the doctors and rose tinted glasses... I know I couldn't get away with that as a veterinarian but it's acceptable in human medicine??
I keep telling her that you HAVE to advocate for yourself. I had a friend/client named Nancy (41 years old) who was diagnosed with breast cancer a little over a year ago. They did chemo then did a double masectomy with reconstruction. Everything went great but on her recheck they noticed that her blood work still was off so they sent her in for another scan. The initial scan didn't reveal anything abnormal so luckily they redid it but this time included her head in it. Well she had mets to her brain. They did another surgery but still only gave her a prognosis of 5 years to live. I just found out today that she passed away on Friday. I think they gave her a prognosis of 5 years about 5 months ago. I know medicine isn't exact and who could know what God's plan is.. but I DO know that it's easy to demand that a full scan be done just to be sure it's not metastasized to other places.
Sorry for the length of this post but I just really really really want to push for people to go and do the research for yourself, talk to people who have been through it and make sure you NEVER stop pushing for the best care and testing for yourself.

1 comment:

Deena said...

Thanks so much for your honest and informative post. You are 100% right about the importance of advocating for yourself at all times! I will say a pray for your mom. I'll also pray for you as you parent alone right now...I have lived through many years of a traveling husband and I remember those days all too well!!! Hang in there! Have a wonderful Christmas and enjoy the magic with your little blessings-Deena