Follow up Treatment for Her2+ ductal carcinoma

silvergranny

I was diagnosed in late 2015 with HER2 + ductual carcinoma, had two lumpectomies, chemo, radiation and Herceptin. I had a very bad oncologist who often lied to me and wouldn't consider any of my concerns so after treatment she sent me back to my family doctor because I refused to take Arimidex. She only told me to get a breast exam every six months and mammogram every year. My family doctor only refers to her report when I ask about further tests fo check for other cancers as it runs in my family. He then said nothing further is required.

What follow up are others receiving who have a good oncologist? Because she ignored my concerns about the chemo causing another stroke, I ended up having a TIA but there was no damage. The neurologist said I was right that chemo can cause strokes and mini strokes. I had already had stroke in early 2015 but have mostly recovered. However I am having trouble worrying about getting cancer again and would feel better if there was an annual MRI or pet scan to make sure I am still cancer free. No one else in my blood family has beat cancer so I have good reason to worry, although I try to stay positive.

Please let me know what follow up you get so I can talk to my family doctor. Thanks.

BarredOwl

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BarredOwl

bumping a second time

NotVeryBrave

I just recently finished Herceptin. My MO intends to see me every 3 months for 2 years. I had a BMX so no mammograms for me. I'll see my BS every 6 months for 2 years as well. I should get an MRI at 3 years to assess for implant rupture. The MO wants me on Tamoxifen, but I quit after 3 months because of so many SE's. I may restart at a lower dose or switch to an AI if menopause is confirmed, but that worries me since I already have osteopenia. I'm only scheduled to have routine blood work done.

Did you have any residual cancer at the time of surgery? Or was your chemo after surgery? Some people are taking Nerlynx - there's a thread or two on here about it.

I know there are MO's that order lots of scans. Some reasons to not get them are increased radiation exposure, increased anxiety, false positives, and cost.

I'm planning to see another MO for a second opinion. Initially I felt like the plan of care was pretty standard so didn't think it mattered. Now I want to make sure that my follow up makes sense.

xxyzed

I am in Australia and here it is standard for there to be no follow up mri or pet scans. Any new symptom that persists for two weeks is to be reported to the oncologist for further investigation.

I have ongoing follow up appointments with the medical oncologist which start off three monthly and then move to six monthly. The appointment consists of a general how you are feeling and a physical exam.

I also have follow up appointments with both the surgeon and radiation oncologist once a year timed so I see one or the other every six months. These appointments are also a general how you feeling and physical exam.

I also have regular echocardiograms. I don’t know how long these continue for.

I have recently started on a Neratinib trial so follow up is more frequent and extensive in accordance with the trial schedule and includes blood tests and heart monitoring.

In my experience they have been pretty quick to do ct and mri scans when I have complained of ongoing pain following chemo that in their opinion should have resolved. I also find the radiation oncologist is the quickest to suggest baseline scans for minor complaints.

I am hormone negative so am not familiar with the follow up for hormone positive patients. I expect it is the same as mine but would also involve blood tests for hormone monitoring.

All other things like mammograms, Pap smears and bone density monitoring are in accordance with the normal age related schedule as if you were a non cancer patient the frequency of timing depending on the status of your last round of testing.

NotVeryBrave

Oh yeah - I forgot about the echocardiograms. I've been getting them every 3 months and should be moving to every 6 months for the next year.

silvergranny

Thank you for all your replies. The information was very helpful.