Give me a “Two”. Give me a “B”. Give me an “X”?
After the nurse shared the notes on the bone scan, we waited impatiently to speak to the ENT. After a week, we finally had our chance, and the meeting was a complete bust.
He confirmed that the tumor was about the size of a football and (previously) extended from my chin to below my heart basically. The PET scan also confirmed that the tumor did not extend below the diaphram or into the liver or spleen, which was definitely good news. He too mentioned the bone activity, but refused to comment as to what this meant by stage – the oncologist was going to have to weigh in.
Another week of waiting. We had actually scheduled our meeting with the oncologist as soon as the first biopsy came back and three weeks was the soonest we could get in. The ENT kept plugging away at the necessary tests while we were waiting on that visit so that we could start treatment sooner once we were in with them. And still. We had to wait another week.
I googled, researched, we looked at the PET scan ourselves. Everything we could find said that if it’s in the bones it’s stage IV. We researched the different in treatments. If it was stage II, it was an “easier” chemo. A chemo that tends to be better tolerated. If it was stage IV the treatment was viewed as universally more difficult.
The difference in stage would make a world of difference in how I could take care of my babies.
Our visit with the Onc finally arrived. First he asked me a series of unending questions in detail about the symptom questionnaire I had filled out. Then he mentioned stage. We held hands and our breath. “You are difficult to stage. ” Not a good start. “But I think we’re going to put you at IIB, because you appear to have some symptoms, and research has shown people with symptoms often need to be treated as if the cancer is more advanced.”
IIB?
We were elated! “The radiologist is going to have to weigh in as to whether or not your are considered an X as well, because your tumor is borderline. I’d like to know more about your sed rate……..” I’m not sure I caught everything he had to say here. My mind was stuck on STAGE II!!!! I finally worked up the nerve to ask about the bone activity. The Onc explained with lymphoma it’s pretty common to see bone activity on the scan, but they look for signs of bone involvement. Basically with bone activity the bones show up pretty evenly on the PET scan. With bone involvement there are bright spots in the bones that show active growth of cancer. Bone activity is normal, bone involvement is bad news.
Thank God.
We finally landed at me being stage IIBX for treatment purposes. My tumor is slightly shy of the size requirements for “Bulky” which is the X, but because it’s borderline, they looked at my sed rate (rate of inflammation) and it was 29. Over 30 would make me Bulky. Basically neither the Onc or the Rad Onc was comfortable NOT treating me as if it were bulky, because if you under-treat and it comes back, you have much more difficult treatment options for a recurrence that are tolerated far less.
We are proceeding with caution when it comes to staging. The difference between just II and IIBX is an extra month of chemo and three weeks of radiation. I’ll take it if it means the cancer will be gone. I’d rather be cautious to avoid a recurrence. It’s also not so much additional treatment that potential long-term effects increases exponentially.
As we left the appointment we were giddy, laughing and hugging each other. Stage II! Never thought I’d celebrate having Stage II Cancer, but celebrate we did.
Cancer Ever After 