Topic: Monitoring-When Not doing Chemo

My BS is scheduling regular follow-up mammograms.

I am on tamoxifen, even though I'm post-menopausal, because of osteoporosis and high cholesterol.

I've had DEXA scans, and blood panels through my PCP to monitor cholesterol.

I'm seeing hem/oncologist in 3 months to discuss any side effects (tolerating it well so far). We're going to monitor liver function. She also does a breast exam.

I think this weekend, I plant flowers.

The only treatment I've had was a lumpectomy and SNB back in 3/2004. I was never offered chemo because of the size and grade and I refused radiation and hormonal therapy. The only testing I've ever had were all done around the time of diagnosis; bone scan, CXR, bone density, basic labs like CBC and full chemistry panel and a lab test to confirm that I was in menopause at age 49. 

I haven't seen an oncologist since shortly after my surgery in 2004 - and that was only to get the results of my bone density test and tell him I wasn't going to take the arimidex he was offering. Since I refused the drug and wasn't ungoing any other kind of treatment, we both agreed that there was really no point in continuing to see him. Actually, he's my neighbor (lives 4 houses away), so I "see" him frequently, but just in passing.  My only follow up is with my PCP. I get yearly mammograms and breast exams during my yearly physicals, but that's about it.  For me, other than still reading this forum, life goes on basically the same as if the breast cancer never happened.

Hi Pam, this was a great idea!

So far I had.... prior to surgery an MRI of both breasts to check for invasive disease and a chest x-ray.  Lumpectomy with re-excission to clear 1 margin, SNB, 33 Rads to be completed on May 20th. After seeing 1st oncologist at 1st visit she ordered CT scan of head, chest, and ab areas, entire body bone scan with dye contrast. Extensive blood work up (I don't think she did tumor markers). Saw different oncologist this week, was examined from head to toe but doctor would not give definite follow up plan at visit, was told that "we'll see how things are going" and to come back in 3 months unless there are problems.   Have appt. to see 1st (original) oncologist on Friday, May 16th will see what she will do for follow up care, but at initial visits she assured me that she would monitor me closely. So far I have consulted with 10 medical oncologits regarding initial treatment but only 2 for follow up.  Still trying to choose which oncologist to keep for follow up care. Will choose  medical oncologist that will monitor me closely. Also, I am planning to see a Naturapathic physician my surgeon recommended who specializes in women's health to see what advice she can offer me to stay cancer free.  I'll edit after Friday's oncologist's visit.

Liz 

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Stage T1mic 

DCIS with less than 1mm of microinvasion

ER-,PR-, Her+

I did not hve chemo -- tumor was small, tubular and benefit of chemo not enough

I am taking tamoxiften - been on it for 5 months

I see my onc every 3-4 months and my breast surgeon every 6 months -- alternate breast MRI with mammogram every 6 months.

I am also still seeing my plastic surgeon as I had DIEP reconstruction.   Finished stage II at end of February -- will see PS in 6 months for nipple and if I decide not to have that surgery, I still see him in 6 months.

The first time I saw my onc she ran blood tests -- the second time she did not, but did breast exam.   I am assuming I will have blood drawn on my next visit, if not, I will ask for it.

I had two opinions when first diagnosed.   My first onc, not the one I am currently with, ran a bone scan and chest x-ray and schedules those tests annually.   My new onc has not mentioned it -- seems to only run those tests if you have symptoms.

M.

All of my doctors work as a team -- my breast surgeon is responsible for scheduling mammograms and breast MRI -- all results from these tests go to her.    After the breast MRI, I did not see her -- just got the results, but for mammograms, an appointment is scheduled right after the mammogram to go over the results with the breast surgeon.  Since I am not yet a full year post diagnosis, my other visits to the breast surgeon were post mastectomy follow-up.

M.

Pam,

Your questions certainly are not dumb.

Tumor markers are blood tests taken to determine what the level is for BC specific markers:  CEA; CA27-29; and CA 15-3 and possibly a few more.  Two things to keep in mind about tumor markers:

1.  TM's are not used by each and every oncologist.  Some don't believe in them and refuse to order them, even at patient request.

2.  They are not 100% accurate for 100% of cancer patients.  Meaning, if some ladies have elevation of TM's that can be a clear sign of cancer spreading, or on the move and usually scans are ordered to make a determination.  In others, TM's are not at all an accurate depiction and that's why some Onc's don't use them.

Your question regarding continued follow-up with the breast surgeon can better be answered by those who do follow-up with the BS.  I saw my BS twice after mastectomy.  Once to have the drains removed and once more to have fluid removed (a seroma).  That was it.  I believe in staying away from surgeons as much as possible!

Good luck to you.