My MBC Story
Hi! I’m Jane. I’m 69 years old. I have two beautiful sons who are 16 years apart. My oldest lives with his family in Virginia. He and his wife blessed me with 2 grandchildren, a boy 13 and a girl 11. My youngest is my primary caregiver. He is such a blessing to me, and I don’t know how I’d do any of this without him.
I was first diagnosed with colon cancer in March 2017. For my birthday in August 2017, I was then diagnosed with breast cancer. The cancers were determined unrelated; just bad luck!
The first cancer
When I was diagnosed with colon cancer and had the subsequent colon resection, I never “felt” like a cancer survivor. It seemed too simple; no chemo, no hair loss, none of the usual cancer stories. The surgery was not “easy,” but I physically handled it very well & stayed away from work for 8 weeks at my surgeon’s demand. He told me that I had no idea the trauma my body had just been through. So here I am with a 6-7 inch scar in my belly as a reminder. I was fortunate to have accumulated 12 weeks of annual leave at my job I’d had for over 30 years.
Hit with cancer again
In August 2017, I was diagnosed with breast cancer. The lumpectomy was done outpatient on a Friday, and I returned to work Monday. The surgeon removed the 1-2cm tumor; biopsies confirmed clear margins and no lymph nodes involved. I was IDC (Invasive Ductal Cell Carcinoma), ER+, PR+, HER2-, BRCA negative, and Onco of 22.
I had 12 rounds of radiation, no chemo. Again, I didn’t feel like I was genuinely a cancer patient; no outward physical proof. I continued to work, and went to each radiation treatment at lunchtime, alone. Doing it alone was my choice. I rang the bell as I was walking out after my final treatment. There were no cheers or “atta girls,” because it’s the way I was taught to deal with such things.
So now here I am with a 2” scar on my right breast, which now also has a divot and is a cup smaller than the left. The right side does have a perkier nipple though!
Not the "storied" cancer experience
I ALWAYS FELT LIKE A POSER…THROUGH BOTH CANCERS because I didn’t have a “storied” cancer experience. Survivor’s guilt…maybe. I don’t know what it’s called, but it always haunted me.
I wrote the following after surgery, before I started radiation:
Friends say that I must be asking, “Why me?” and that I must be angry.
But that’s not it, not the why me, not with cancer. How can I ask about ME when there are babies, children and so many others who have it worse than I?
I am angry though, because I have plans and these cancers just haven’t fit in my plans. Ha! Joke’s on me! And I’m reminded that shit happens over which I have no control.
I’m reminded that I need to wake up every single day and enjoy every breath I’m able to take, to never again take for granted the simple act of waking to a normal day as a healthy individual. —October 2017
It's not shingles, it's Stage IV MBC
After being incorrectly diagnosed in May 2022 with shingles (without shingles rash), I was eventually diagnosed with Metastatic Cancer in early June 2022. I was sent to a surgeon for removal and biopsy of a large node in my stomach area, just below my left ribs. On July 11th, I was formally diagnosed with Stage IV, MBC. Dr. Google told me it's treatable, not curable, and life expectancy is crap.
I am ER+ (100%), HER2-, still BRCA negative and some other gene mutation identifiers that may assist in determining treatment options when, if, my current treatment fails. I have mets to lymph nodes, bones, lungs, abdominal wall, etc.
Treatments and side effects
So I began taking Letrozole (estrogen blocker), Xgeva monthly injections (to improve bone regeneration/strength), radiation therapy to spine and ribs to help with pain, Gabapentin for nerve pain, and after radiation…Ibrance 125 mg (CDK4/6 inhibitor). I found out that the Gabapentin also assists with side effects (per my PCP).
Although each of these can have extreme side effects (SE), the 5 SEs that so far mostly affect me are joint pain, mouth sores, extreme fatigue, dizziness, and extremely low white blood cell counts (ANC and WBC). These are concerning to me because Ibrance treatment can be delayed. After the first month the Ibrance dosage was decreased to 100 mg, and the 2nd cycle delayed for a week. Oh…..and brain fog…. I forgot about the SE brain fog (go figure).
I have also experienced the completely unexpected extreme pain associated with the after-effects of radiation (as per the radiation oncologist “it stirs things up in there”), and the annoying pain of what my oncologist said could be the extensive cancer cells dying…or perhaps nerve regeneration. The first was controlled by temporarily increasing the Gabapentin dosage and lasted a couple days. The later is clearing on its own after 2-3 weeks (again temporarily increasing the gabapentin dosage).
Additionally my calcium levels are checked each month prior to the Xgeva injection. So far the Calcium and Vit D pills are keeping this in line so that I’ve not had to delay injections.
Frequency of medical visits slow down, but they're still a necessity
Although initially it seemed that I was at a medical facility every day, with bloodwork, scans, radiation prep, radiation therapy; I now go twice a month for the Xgeva injection & bloodwork, and for bloodwork/oncologist visit to determine progress or problems and whether I can begin another Ibrance cycle as scheduled. But these two days are a total emotional drain—the waiting, waiting for the bloodwork, seeing the medical staff, finding out the bloodwork results, and being around the extremely unwell, beautiful, vulnerable, courageous people that are also waiting.
I had my first CT scan, since beginning treatment, on November 3rd. I truly am trying to live my life without “worrying” about the unknown… But labxiety and scanxiety are real!! Fortunately the results were good. All physically noticeable nodules are gone, others are shrinking. This is key, as my PCP told me, because the lymph nodes are feeding the other mets.
I am so proud of the way he is handling everything
Also, I don’t know how I would get through any of this without my son, HD by my side. He has personally experienced everything first hand, including the extreme emotions, the test results, and appointments. He has been there when I cried from the pain, when I’ve needed to rest, asked him to be nearby while I shower because I feel unsteady, when I complain and when I have really good days. He does so much around the house & outside.
We comfort each other during our rough times. We laugh, we cry, and we laugh some more. We hold each other. During our times together, we hug a lot, and tell each other how much we love each other. We appreciate each other and recognize the tiny things we do for each other. He tells me how proud he is of the way I handle everything. And I tell him how proud I am of the way he is handling everything.
We both let our family and close friends know that they are loved. We both know that it’s so important to let them know, and to show them often.
Although MBC has possibly taken my life expectancy from me and some of my life quality, it has also made me much more appreciative. Appreciative of close friends and family, of those who are going through something. I’m much more aware of time and how I want to “be” in mine.
My healthcare team
My take may be a little different than other patients. I depend on my Oncologist to treat my cancer, all treatment, & anything associated that shows up on a test/scan etc. (ie: lung issues, low counts, high counts). I look to the Social Worker & Teaching RN for financial considerations & for information about properly taking meds for treatment.
BUT I depend on my PCP for all else, including SEs from medications, pain either from cancer or age, ensuring vaccinations & routine tests are up to date. Referring me to the proper specialists (ie Physical Therapist) when needed. AND I expect them ALL to share information with each other about me and my care…to ensure continuity of care.
This is my story...I will continue with some "random musings" at another time.
Do you have a safe space where others understand what you are going through?