Standard care post-treatment

StAuggie

Hey all, I'm looking to see if my post-care is normal, or standard.

I had three 1 cm tumors. Grade 3. All Her2- and Pr-. One was E-, one E+ 3%, one E+ 9%. Four AC, 12 Taxol, then BMX.

I had one pet scan prior to chemo, showing no lymph node involvement, and an ultrasound near the end of chemo to check progress. Two of the three were gone, and a tiny portion of one remained. Surgery removed all with clean margins, and confirmed no lymph node involvement. This was last October. I'm on tamoxifen.

Since then, my onc checkups have consisted only of them asking if I'm having pain, and dealing with side effects from tamoxifen. One checkup included a breast area exam. Is this normal? No blood work, no scans to be sure that mets aren't forming? Is this standard care? I live in fear of it growing where it can't be seen or felt. We all know how triple neg likes to travel. My doctor is ready to have my appointments going to every six months. I just need to know if this is normal, or if I need to advocate for myself.

Ingerp

I'm not TN, but I currently see my RO once a year, my MO twice a year, and I get an annual mammo. Physical breast exam at all of those but no bloodwork or anything. Scans are not part of normal follow-up.

Beesie

Sounds pretty normal. Here are the NCCN Guidelines for follow-up after breast cancer treatment. I've boxed in red the 3 areas that are relevant to you, being triple negative. Note that under Imaging, obviously "Mammography every 12 mo" doesn't apply to you since you've had a BMX.

The only thing that maybe should be different is that you should be getting a physical exam at every visit.

MountainMia

This is my experience, too. I was diagnosed 2/2019 with IDC 1.5cm and DCIS 2.9cm, triple negative, grade 3, no positive nodes. I had lumpectomy, chemo AC x 4, radiation and finished treatment a year ago this week. I will have annual mammogram and ultrasound (dense breasts,) an annual exam with BS, another with someone from the "survivorship clinic," and one with my PCP. The 3 doc exams are spread through the year. Each of those will include a physical exam. No blood tests other than the normal ones my PCP always orders, and no extra scans. My care center is a NCI (National Cancer Institute) cancer care center.

It DOES feel odd to be kind of cut loose, after all the appointments of treatment. It's a bit unsettling. But it's the standard of care, as Beesie shows above.

StAuggie

Thank you all! I try not to live in this fear-- but the thought of Mets is never far from my mind. I really like my doctor, but I don't know cancer care protocols and wanted to make sure this was normal. I've had other people ask me about it, and they are always surprised that there isn't blood work or scans to monitor it.

moth

the way my MO explained it is that there are no evidence based reasons to go looking for mets. If they show up, you'll know and there's no documented difference in prognosis.

That said, it's important to not ignore symptoms. New symptom/pain that doesn't go away in 2 weeks, get checked. Headaches, joint/pain ache, cough,.shortness of breath... There's a nice poster explaining common met sites and symptoms

https://www.abcdiagnosis.co.uk/resources/infograph...

LillyIsHere

Thank you for the link Moth. Interesting but for us who are on AI treatments, we have most of the SE similar to recurrence. I guess that's why we get nervous.

I am told to see MO only 2xyear. He does blood check to make sure I'm good to go for zometa infusion and basically answers my questions. The last time I asked him if he can do a physical exam and he just checked around breast area for a second. That's it!

Cutie

Hi All,

I also created a post what we do after treatment 2 days ago and nobody joined. But I m here. I had BC diagnosed late 2018 and treatments of 4 AC and T, then double mastectomy. No hormonal therapy. I m seeing my MO every 3 months and she check physical checks at breast area. Also blood work to make sure liver, kidney function ok plus immune system. Some said blood work for CA 17 etc.show any issues in your system early. I was wondering if we are required to do scans to monitor.

Cutie

Mememee

my see my onco every 3 months, get an mri every 6 months because they can’t see behind my breast reconstruction (DIEP flap) with a mammogram. Blood work and physical exam every visit. Bone scan yearly while n AI.

santabarbarian

I got blood work every 90 days for 3 years.  Now I am on 6 month intervals.