What is considered expected follow-up?

If you have dense breasts, I would insist on something more than a mammogram. Depending on what state you’re in, there are mandates for insurance companies to cover ultrasound and/or MRI for folks with very dense breast. You can find your state here:
https://densebreast-info.org/legislative-information/state-legislation-map/

I live in a state where I could’ve been getting ultrasound or MRI since 2018. Had I known, I would’ve insisted upon it and perhaps would’ve found my ILC earlier. My yearly mammograms missed it.

Since you have dense breasts I think you are high risk. I'm not sure it matters, but does your aftercare letter also say fibrous breasts. I also always get this letter and it states I'm 20-26% likely to get BC. I was diagnosed with early ILC 7/23. It was missed by mamogram and US but found by MRI. My oncologist told me that if I have a DMX I will still have to have yearly MRI's. After a lumpectomy I still wanted a DMX. Initially I was told to get the Lumpectomy even though it wasn't what I wanted. I just wanted the C out of me asap so I went along with it. Another letter came about more suspicious areas so I went to several other surgeons and found one to preform the DMX. I had it 2/1/24. My biopsy showed ILC in situ close to the lumpectomy site and many precancerous areas in both breasts. At this point I feel like I'm on my own. My oncologist is out of the office for personal reasons. I'm being pawned off to NPs and telehealth visits. One laughed when I mentioned my body aches. It could be because I went to a different surgeon for the DMX. My mother had a lumpectomy in 2007, a SMX in 2010 and the other SMX in 2014. All for cancer. I didn't want to repeat her surgical history. With my biopsy report, I was on track to just that.. I am probably going to search out another breast cancer oncologist. My advice is to keep advocating for ourselves. I think in most cases we know more about ILC than general oncologists. My first oncologist had me in tears. He was so combative. He told me that I couldn't have had a contrast enhanced mamogram because there was no such thing. If he had even read my file it was right there- done 1 month before our visit. And that I didn't have an oncotype test. I had. And that his follow-up would be a yearly mamogram. I left and canceled our 2nd appointment. Sorry about how long this is. Just please follow your instincts. If you are on this site it means you are learning. Don't give up and fight for the tests you feel you need. Hugs

I’ll take a longer look at the reference when back home, but off the bat, looks like mammo is the only exam under Wisconsin. Grrrr..

Isn’t it funny how the beginning stages of this disease are treated with utmost dignity and compassion and then you get assigned to an oncologist and it’s a 180 degree turn for some. I am hoping for the best.

My approach is best described as aggressive. While I'm always pleased to see alternate opinions because I am not certain of anything, I'm motivated by the occurance of breast cancer metastasized to the brain a neighbor, a renter and a relative. All of these women had breast cancer over 30 years earlier and were assured of the cureative effect of treatment.
Until I had cancer myself, I couldn't understand how these intelligent women hadn't had followup testing. Now I understand that the follow up is not encouraged expecially after five years. And is sometimes denied by medical providers. Most cancers don't end up directly in the brain and in these cases there were different stops along the way where cancers would have been detected. Undetected brain cancer is a painful madness. In all three women it was behaviour that alerted medical professionals to the cancers, too late.
Worse is the number of chemotherapeutic agents that enhance metastasis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6616300/#:~:text=Chemotherapeutic%20drugs%2C%20cisplatin%2C%20paclitaxel%2C,6%2C%20and%20VEGF%2DA.
Now I'am beginning to understand that PET/CTs are uncommonly used before or after beast cancer.

You are so right!! My surgeons assistant called me a few days after my lumpectomy to see how I was doing and to set up my 1st post op appointment. She mentioned Aug 31,2023. My husband and I go to our appointments together. I was on speaker phone so I asked him if the date was good in case he had something going on. She immediately said if I can't make Aug 31, I would have to wait until February--5 months after my surgery. We were both stunned. When I went to the appointment I didn't even see the surgeon. I saw her. Any questions I had it took her at least a week to 11 days to respond to me. You are right-lol!!! Before the surgery she got back to me right away.

My opinion is based on the fact that she is Stage I with no lymph node involvement.

I read through the FDA document.

Though Wisconsin currently has no legislation supporting more advanced screening, I found this on the state site: https://docs.legis.wisconsin.gov/2023/related/proposals/ab117 and it appears to be following suit with surrounding states regarding insurance coverage for advanced screening.

Sadly, it has yet to pass after rejecting it 4/15/24. I sent an inquiry to one of the bill's authors.

I yield to your greater knowlege and better judgement, in admitting the source of my bias.

There are no national protocols for ILC after surgery and radiation.

I am stage 1B ILC. No cancer in sentinel nodes. Er+, PR+, and HER2- and Breasts are not dense.
My mammogram site told me that it would be mammogram and ultrasound every 6 months for 2 years.

First appointment mammogram and ultrasound.
2nd at 6 mo. is of left breast only. Some Tech came out and said they were not doing ultrasound as my breast is not dense.
Spent 4 minutes explaining to this “tech” that one does not see ILC with only a mammogram. She said that doctor had already gone on to next patient.

Sent them a survey and got a call where they said I could come in for an ultrasound and of course they would do a mammogram and ultrasound in 6 months.

I was stressed out from this nonsense and finally decided to wait 6 months.

They also gave me a form that said I was high risk and that I should come in and set up a genetics appointment.

Have already been tested for 32 markers which were negative.

Saw medical oncologist and told her that the genetics test just tested 32 markers and left out 5 ILC tests.

So, I have that appointment in 2 weeks.

Meanwhile, my medical oncologist does not recommend any MRI’s unless absolutely necessary and said that some people have died from the contrast agent or gotten bad reactions.

So, this is where I am for now.
Also, Europe has put a moratorium on MRI’s until they have further information.

Also, it seems that it is up to me to figure out if I have any of the symptoms of metastatic spread which is different that IDC…and that I would know this as I would not feel well…..