Since I started Luxury Reading in 2009, it has always been about books. Since my diagnosis with metastatic breast cancer (MBS) two weeks ago, this blog – by default – will also become my avenue for chronicling my journey and updating others on my treatment (running two blogs was a daunting prospect!)
My husband and I love hearing from everyone by phone or through text messages but relaying the same diagnosis and treatment information to everyone can be a bit overwhelming. We will do our best to post the nitty-gritty details here and would love to chat to you about anything else!
As some of you know, I was diagnosed with stage II breast cancer in 2012 at the age of 28. I tested negative for BRCA1 and BRCA 2 (breast cancer genes) and have no direct family history of breast cancer. At that time, I had surgery and completed eight rounds of chemotherapy. Two days before my 29th birthday, I was declared cancer free and put on a regimen of Tamoxifen.
A few weeks ago, I began having upper abdominal pain and after initially referring me to a gastroenterologist, Dr. V (my primary care physician) decided to also order some blood tests and an abdominal and chest CT scan. When my blood tests showed elevated liver enzyme levels, my CT scans were moved up. Fast forward a few days and I was sitting in Dr. M’s (my old oncologist) office being told that my cancer has returned and spread to my liver–hence the abdominal pain. As a result, I am now living with MBS.
Even though the cancer is not technically located in my breasts, it is still called breast cancer because that is where it originated. At this time, it looks to be isolated to my liver but I will need additional scans to rule out other metastases (mets).
This week will include:
- a PET scan to check for bone mets
- waiting for results of the FISH test that will give us an answer about HER2
- port placement (to allow for chemo administration since my veins are just about done)
- registering for a clinical trial that I might be ineligible for if I’m HER2 positive
- submission of my tissue from the liver biopsy for a genomic profile with FoundationOne
- my birthday (!)
We are not yet sure what my treatment will entail since much of it depends on my HER2 status, results of the PET scan, etc. But either way, more chemo is on the horizon.
For a timeline of my diagnoses and treatments, click here.
The Questions We Often Get (and Other Thoughts)
You were diagnosed at an early stage…why did this come back? What I’ve only recently found out is that whether you’re diagnosed with Stage I or Stage III, you have the same chances of developing metastatic cancer months or years later. And we don’t know why. That’s why early detection is not the solution it’s touted to be.
Why didn’t they find this earlier? Cancer is tricky and often only detectable once the tumors/mets becomes large enough to be visible on a scan. I had completely normal scans a year ago and normal blood tests just a few months ago. Dr. M said that cancer cells likely traveled to my liver before my original breast cancer was discovered in 2012 and their growth/detection was stunted because I was in active treatment and then on Tamoxifen. It’s anybody’s guess why these cancer cells eventually began growing.
How can I help? Hooman and I are doing OK for now but we truly appreciate all the offers of help. I can’t think of any tangible help we need right now but agree with the tips offered by the wonderful Elena Miller, MD.
We may need more practical help (rides, meals, etc.) once I begin treatment and I plan on starting a Lotsa Helping Hands community when that becomes the case.
What should I not do/say, etc.?
- “But you look fine…” – how cancer patients look on the outside is no indication of how they feel inside
- Please don’t worry about bringing/sending cookies, cupcakes, candy, chocolate, alcohol or anything that has sugar or can turn into sugar once eaten. I am on a plant based and sugar free diet so finding the right food in general can be somewhat difficult.
- I love connecting with others living with cancer and learning about new evidence-based treatments, trials, etc. That said, I do not believe in unproven methods of treating cancer (like vitamin B17, eating baking soda, ingesting insane amounts of supplements, treating cancer like a virus, the Gerson Method, Essiac tea, dichloroacetate, and on and on) and prefer not to hear about them. I respect everyone’s opinion but I strongly believe in using traditional medicine and complementing it with non-harmful integrative approaches like a healthy diet and acupuncture.
Hooman and I truly appreciate everyone’s support and prayers and will continue to post updates on this blog. If you want to know when updates are posted, feel free to enter your e-mail address under “Subscribe” on the right hand side. (unfortunately – or fortunately if you like reading – you will also receive book reviews that I post here) You can also click on the #StrongerThanCancer category at the top of any page to see all related blog posts.
Some links I wanted to share:
- 44 Ways to Make the Day of Someone With Cancer by Elana Miller, MD
- 17 Things No One Tells You About Breast Cancer
- Supporting a Friend Who Has Cancer from Cancer.net
- METAvivor – great site about metastatic cancer (and one I support over Susan G. Komen)
- And since some of you have asked, my cancer-friendly Amazon Wish List
Thank you for reading and till next time…