Just completed "active" treatment. Feeling uneasy.

Mccjm22

Hi everyone! I'm new here. This is my first post. Brief history:

• Diagnosed 1/8/15 with stage 2 ILC
• Double mastectomy 2/25/15
• Pathology came back worse than anticipated - 9cm tumor, sentinel node involvement, traces of cancer cells on axillary nodes but not enough to call any "positive"
• Diagnosis changed to Stage 3
• 8 rounds of chemo (4 AC, 4 Taxol) finished July 13, 2015.
• 25 rads - finished 9/4/15
• Starting hormonal therapy end of this month (er/pr+)

I didn't have any scans prior to any diagnosis treatment (tumor found via ultrasound/biopsy).

So as I start this next phase, I feel so nervous and anxious and worried. I have no scan scheduled. My tumor was removed in its entirety, and I show no signs of metastasis, so oncologist has no reason to scan. I am not looking for anyone to tell me I need to ask for a scan, I am looking for individuals to tell me that they didn't have a scan either. I am a very good advocate for myself, and will push for one if I feel as though it is necessary.

The worried part comes with being concerned for future mets. I know this is a common concern for anyone facing breast cancer, and in particular those with a higher stage, but I wondered how those who had mets found out if not for a scan (what type of pains, how long, etc.). I will post this on the "concerned about mets" board as well.

My question for this board is - did anyone else go through diagnosis, treatment, post treatment with no scans?

Thanks to any and all for their response. What a wonderful community this is.

labelle

My dx and treatment were somewhat different than yours, but no scans or tumor marker tests for me either. Once it was determined I had a positive node, I thought I"d get a scan but OC said "Nope, not unless you have symptoms in the future." My SIL with a diagnosis of TN BC had a PT scan immediately after her diagnosis-different OC, different treatment center.

It seems to me if one were to have a progression, it would be important to find it quickly, via a scan, but OC says "no." I've often thought I'd like the reassurance a negative PT scan might bring, but then I read that having a PT scan is the equivalent of 7000 x-rays, in terms of radiation exposure, and I sort of feell like I've had enough radiation in my life already and so have pretty mixed feelings about a PT or CT scan. . We aren't the only ones, this question has been kicked around on here a few times since I joined and some to get scans and some don't. It seems mostly to depend upon the OC rather than your stage at time of dx from what I can tell. Personally, I wouldn't mind having a full body MRI (no radiation) but OC says they show up too many false positives and besides there is no way my insurance company would pay for it - had a hard enough time getting them to approve a breast MRI even after a diagnosis of BC.

ElaineTherese

I was diagnosed with Stage III IDC, and I've had three PET scans, a CT scan, two breast MRIs, and one MRI of my hip (to check for mets). I've also had several heart scans because I'm HER2+ and had to have a year of herceptin. Plus, I've had a dexascan to get a baseline for my bone density because I'm on an AI. Let's just say that my medical oncologist (MO) is a big scanner.

One reason she ordered so many scans is because I was doing neoadjuvant chemotherapy. We scanned before chemo and after chemo to see whether or not chemo worked (it did). The other reason for the scans? PET scans 1 and 2 showed something on my hip. But, then it didn't show up on the CT scan and the hip MRI, so MO decided it was a false positive. So, we did lots of scanning to discover....nothing! I had no pain in my hip, nada. So, even if we'd skipped all the scans, we'd be at the same place we are right now: no evidence of disease.

kar123

No scans here either. Similar diagnosis. I had the same uneasiness you have now right after treatment. I'm just now coming up on 5 yrs and I can say some of that uneasiness is subsiding. Not all, but some. Hang in there!

kar123

No scans here either. Similar diagnosis. I had the same uneasiness you have now right after treatment. I'm just now coming up on 5 yrs and I can say some of that uneasiness is subsiding. Not all, but some. Hang in there!