How often do you get screenings ?

NCI Guidelines suggest a mammogram and clinical breast exam alternated every six months, and depending on other risk factors, a doctor MAY order an MRI. You may also be offered Tamoxifen or an aromatase inhibitor.

There are studies showing that the MRI contrast accumulates in the brain over time and I've decided I don't want one every year

thanks for the link djmammo. Yes, very interesting.

Well, Mr. dontignore, we are specifically discussing LCIS, not normal screening.

Do you have breast cancer? I don't see in any of your posts that you do. What is your story as to why you are posting on breastcancer.org?

Just been diagnosed. I'm in the UK. Local hospital didn't even tell me what LCIS is, abdicated all responsibility and said come back in a year for a mammo. I got myself to referred to a specialist cancer hospital. The approach is very different. They will screen in some form 4 months from diagnosis but in the meantime will put my case through an MDT (multi disciplinary team meeting) just in case there's a case for genetic counselling, MRI etc. I'm happy with this approach. Sue

I don't think you have ANY reason to feel stupid. Almost everything about LCIS is controversial.

Copying of the NCCN guidelines are under copyright, but they do say (2016)

For women who have a lifetime breast cancer risk of >=20% based on history of LCIS or ADH/ALH:

Clinical encounter every 6-12 months

Annual mammogram, but not if < age 30

Consider annual MRI, tomosynthesis, risk reduction strategies...

https://www.nccn.org/professionals/physician_gls/pdf/breas...

Marionsgirl, since you had invasive cancer and DCIS your follow ups are different than those of us with solely LCIS.

NicolaSue, did you read the link Leaf posted above?

They can be considered, which is based on an individuals particular risk. They are not necessarily a blanket recommendation. The recommendation is at least annual mammogram alternated every six months with a clinical breast exam.

I have a high deductible and out of pocket insurance and can't afford an annual MRI. Based on some recent studies that tend to indicate the contrast may accumulate in brain tissue, I am also not thrilled with the idea anymore

A radiologist who contributes here says he has never done a breast MRI without contrast. Apparently the contrast washout is what identifies suspicious areas

Rosy--I was diagnosed with LCIS back in 2003, my risk if further elevated by my family history of bc (mom had ILC); I took tamoxifen for 5 years, have now taken evista for about 7 years, did high risk surveillance of alternating mammos and MRIs with CBEs for many years; my new oncologist doesn't want me to have yearly MRIs or take evista any more, says "we don't know the long term implications"; now I'm reading there may be issues with the contrast dye (gadolinium) building up in the brain, so I'm OK with not continuing them unless needed for something suspicious.(here I was feeling OK having them yearly, cuz no radiation, and now they're worried about the dye! But I was doing what my doctors were recommending at the time; just hope it doesn't cause dementia down the line). I now get 3D tomosynthesis mammos, (once yearly) which according to my oncologist and my radiologist are just as good as the MRI for me, since I have no breast density.

anne

Well, I'll try to give you an overview (obviously from my point of view).

1) I don't know of ANY SCREENING recommendations that involve mammogram screening every 6 months on an ongoing basis. (That means that you have NO suspicious lesions they are following; you have not, for example, have a breast biopsy, and they want another mammogram 3 or 6 months later to make sure things haven't changed for the worse, or they want to get a 'baseline' for your future mammograms.)

2) There is no 'safe' dose of radiation: there is no low dose of radiation that has NO chance of causing cancer. But there is always 'background radiation': there are natural sources of radiation (for example in environmental soils and rocks), and everyone is exposed to cosmic rays.

So intentional radiation exposure is always a risk vs benefit situation. Here's a link to a Wikipedia background radiation rates. https://en.wikipedia.org/wiki/Background_radiation

In this study, where the USPTF was looking at biennial (every 2 year) mammograms in AVERAGE risk women, Models estimated 2 to 11 screening-related deaths from radiation-induced cancer per 100,000 women using digital mammography, depending on age and screening interval. https://www.ncbi.nlm.nih.gov/pubmed/26756737

This paper claimed that mammograms are much less than 1% of the average US person's medical radiation exposure. (2010) http://jamanetwork.com/journals/jama/article-abstr... This same paper claims that in Europe they have standardized medical exposure directives, unlike in the US, where each state regulates Xray devices.

I don't think it matters much if you have a mammogram 6 months after a first mammogram on a one time basis, but if they are planning to give you every 6 month screening mammograms on an on-going basis, I'd be more concerned about that. I thought that BRCA-deleterious mutation women have more interval breast cancers (in other words, breast cancers that were NOT picked up by imaging), but I don't know of any information about more interval breast cancers in LCIS women.

I would question (in other words, I don't know) if twice-a-year mammograms would pick up significantly more breast cancers than annual mammograms in LCIS women. I certainly don't know if twice-a-year screening would change any possible death rates. I don't know of any situation where groups recommend twice-a-year SCREENING mammograms. They usually think the 'average' breast cancer takes some 5-10 years to be picked up by ANY means (including palpation, imaging, etc.)

Thanks Leaf , really helpful. The UK screening programme only calls women every 2-3 years. My LCIS surveillance will call me every 5. It's just that being on the cancer watch protocol after LCIS does not trigger the national screening programme to exclude you so I will get invitations to both. Based on what you say though I think I'm just going to stick with annual mammos and pass up on the other.

Re - what do we tell our daughters - good question! I think that unless we have had genetic testing and know that we have faulty genes then there's no need to tell them they have any increased risk. I have told my daughter about my condition and the surveillance I will have but have not had any discussion around whether she is at any risk or not.

NicolaSue