Question about care after dcis.

Smdelve

I had stage 1 invasive ductal carcinoma with dcis no lymph nodes involved 10 years ago. Then last year I was diagnosed with dcis in the other breast which grew from 4 mm to 2 cm in a month. I ended up doing a double mastectomy and found I had cancer growing in my other breast so we knew I did the right thing. They did not do the onco test. It was grade 3 hr/er positive. My first cancer was her 2 positive and also hr/era positive which I was on tamoxifen for 5 years and I had radiation. Anyway, I went for a check up with my oncologists assistant and she said you are fine you. You will probably never have breast cancer again you don't need to come back. I completely lost on what I should do and my fear of reoccurrence seems a little bit high. This last one was a complete shock but thank god for them watching me so close...it caught early. This is my 3rd cancer battle (same time I was diagnosed with my first breast cancer they found a large node on my thyroid and 1 year later had my thyroid removed only to find out my cancer there was bigger than my breast cancer and had multi small areas of cancer all over my left side on my thyroid). I had radiation iodine for that. So I am a little nervous to be be treated as if I just had a cold or something minor and really pretty cold treatment. Maybe it is just me being too sensitive but my fear is there

candles1

smdelve, I agree with you. I am finding that the follow up for DCIS is pretty dismissive. It's especially annoying when there are certainly tools out there (such as annual MRI) that could follow us pretty well, but which are not utilized purely due to cost IMO

Annette47

After a double mastectomy, with DCIS your odds of a recurrence are incredibly low. Since you’ve had invasive cancer, that’s what would be more likely to require follow-up due to the possibility of distant recurrence, although from what I understand even with invasive cancer, there isn’t much that is usually done after a double mastectomy unless you present with symptoms.

I get your frustration, but DCIS can only recur in the breast and yours are gone, so there isn’t a point to mammograms or MRI’s as there is such minimal breast tissue left to examine that those tools are not very effective. Your best bet is to be vigilant with self-exams and report any changes, however minor.

jill47

smdelve - First off I'm sorry the onco assistant is being so dismissive with you, especially given your cancer history. There must not be a standard of care for post treatment. I'm at the 5 year mark and to my surprise my Onco still wants to see me every 6 months, my next appt is in October, I just had one. Years 0-3 post treatment, I saw BS and Onco twice per year and last 2 years just Onco twice a year. In the last 5 years I've had complications from reconstruction, developed LE (chest & arm),developed osteopenia (which Onco treated with Prolia) and had a BIRAD 4 false alarm lesion. Given the rough time I've had for "just" DCIS, he is compelled to continue my care. Maybe you can bypass the assistant and talk to your Onco directly?

MinusTwo

I had DCIS and a double mastectomy. My surgeon saw me at 3 weeks & then 6 weeks & then every three months for a year. My MO saw me every three months for the 1st year and then every 6 months for the 2nd year. I also had CT scans w & w/o contrast.

Unfortunately at 2 years I did have a recurrence - but I caught that myself by finding a lump under my collar bone.

Jelson

sorry for all you have gone through - and I too would be skeptical about how your concerns were dismissed. Having had a benign thyroid nodule, dcis and endometrial cancer for which I had a total hysterectomy I considered the possibility that I carry a genetic mutation. But because my age, that my children are adopted, my family health history, I decided not to pursue testing. You might come to a different conclusion.

BCO has info on genetic risks http://www.breastcancer.org/risk/factors/genetics .

Due to the thyroid/breast/uterus connection - I read up on PTEN/Cowden Syndrome - but since I am followed for breast cancer (8 years out? annual visits with the MO and Radiologist), I have my remaining thyroid function monitored every year, no longer have ovaries or uterus and I get colonoscopies every 10 years - even if I have it, I don't think there is much more I could or would be willing to do. So I echo what others have said - talk directly to your MO and if upon research, you are so inclined, ask about genetic testing.