Newbie wondering about proper staging and blood testing

DragonflyWins

I was diagnosed with bilateral grade 1 breast cancer on May 4. The left is papillary and the right is invasive. Both are HER- and estrogen fed. The initial mammograms identified one 2+cm mass in each breast and the MRI identified an additional mass in both breasts. One of the new ones was able to be biopsied through the untrasound needle biopsy, and determined to also be positive and the same type/grade as the first one. The other side will diagnosed via a MRI guided biopsy. My lymph nodes appear to be fine ;-)

I feel very fortunate as my oncologist says I have "very well behaved cancer cells" and it is "very curable".

Initially I didn't do any of research, as I had a lot of other things going on in my life. My husband who had been sailing from Fiji to Hawaii was dismasted 400 miles south of Hawaii and struggling to get to a safe harbor. I also felt that there was no reason to research until I had a full diagnosis. What's the point in speculating or becoming scared needlessly. I was also extremely pleased with the care, attention and information I was being provided by the doctors and nurses.

After the MRI biopsy results come back, the genetics and the BRCA sub-type testing will be complete and the full picture should be there to make a decision on the best way of winning this battle.

But now that my husband is safe and I've started doing more research, I saw that blood testing (counts, chemistry & markers) are used to evaluate if the cancer may have traveled beyond my breasts. Since the diagnosis is "invasive", this makes sense to me. However, the oncologist did not order these tests. I discussed it with his nurse and she said that the doctor didn't order these because of my staging didn't indicate that they were necessary. My question to the oncologists nurse was how can you properly determine the stage when you don't do all the tests to make sure that it definitely hasn't traveled? She didn't know....

I asked my navigator whether the blood tests should be done. She said that they don't like to do them because they aren't reliable and they get too many false positives causing undue stress and un-necessary testing.

My feeling is that I'd like to be confident that the cancer is confined to my breasts and hasn't traveled and is silently attacking other portions of my body.

I'd really like to hear from others whether they had blood testing (counts, chemistry & markers) done as part of their diagnosis and if so, what their associated experience was.

ElaineTherese

Hi!

Sorry you find yourself here. My MO (medical oncologist) doesn't use tumor markers at all; she considers them to be too unreliable. To see whether or not cancer has spread elsewhere, she uses a PET scan. PET scans also pick up false positives, but they are one of the most widely used scans to determine whether or not you have metastases. I got a PET scan because I had a large tumor, an aggressive kind of cancer (Grade 3, triple positive), and one node that was compromised. You have already had an MRI which shows no nodal involvement, and you have "very well behaved cancer cells" (Grade 1). So, unless you have symptoms, it is unlikely that your MO will order a PET scan. You are, of course, free to request a PET scan if that will make you feel better. It is the case that if you are Stage IV, your treatment plan would be different than if you are just Stage II.

Best wishes!

DragonflyWins

Elaine,

Thanks so much for your input! My daughter-in-law who is an OB/GYN also suggested a PET Scan. I'll also pursue that once we get all the results. I do feel very fortunate regarding the grade, type and no node involvement. I just want to make sure that it hasn't decided to "mis-behave":-)

Cheers, Jill