How often do you get screenings ?

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racheal1977
racheal1977 Member Posts: 30

I was diagnosed in Nov 2015. In 2016 I had an MRI and 3d mami 6 months apart. Had an appt with my surgeon right after the mammo. She said everything looked good & that I didn't need to be seen again for a year. Just call my regular Dr. to get a breast exam in 6 months.

Is this the norm ? My regular Dr was kinda shocked by this also.


Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

    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

  • djmammo
    djmammo Member Posts: 2,939
    edited March 2017

    Our surveillance imaging protocol was a yearly mammogram and a yearly MRI, offset from each other by 6 months. This way we touched base with the patient every 6 months and insurance would be more likely to pay for this type of yearly "screening" than more frequent ones.

    On the topic of gadolinium accumulation here is an interesting article on the subject from the RSNA: https://press.rsna.org/timssnet/media/pressrelease...

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    thanks for the link djmammo. Yes, very interesting.

  • racheal1977
    racheal1977 Member Posts: 30
    edited March 2017

    Insurance will cover both. I just thought it was odd. Thank you for the reply.

  • racheal1977
    racheal1977 Member Posts: 30
    edited March 2017

    I am 100% okay with out the MRI. Tamoxifen was offered to me, more like pushed on me. I decided not to take it.

  • MagicalBean
    MagicalBean Member Posts: 362
    edited March 2017

    I had a mammo every six months for two years and am now on annuals. I saw my RO every six months for eighteen months and am on annuals now. The same with my surgeon. I see my MO every four months and will likely keep that schedule as long as I stay on Tamoxifen. Hope this helps.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

    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?

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

    No, but I would expect that someone who doesn't have cancer (or LCIS) and doesn't have an intimate knowledge of the rather rare condition we're discussing wouldn't feel the need to chime in on the subject.
  • NicolaSue
    NicolaSue Member Posts: 111
    edited March 2017

    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

  • racheal1977
    racheal1977 Member Posts: 30
    edited March 2017

    Thank you ladies. I feel stupid with not being comfortable with a yearly screening. I just can't shake the feeling though.

  • leaf
    leaf Member Posts: 8,188
    edited March 2017

    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
    MARIONSGIRL Member Posts: 59
    edited March 2017

    I was diagnosed in July 2015. I had my first post treatment mammogram in September 2016 and 6 months later March 2017. According to my MO I will have to have every 6 months until they are stable. I can't have MRI due to stapes implant. I see my MO every 3 months for first two years and then every six months for as long as I am on aromatase inhibitor, Aromasin. I have seen my surgeon once, a year after surgery and will see her again this September. I have seen my RO once and will again in October.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

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

  • NicolaSue
    NicolaSue Member Posts: 111
    edited March 2017

    So for those with LCIS only, do you have MRIs? Here in the UK it's not routine on the NHS but I'm considering having one. For me LCIS was a shock and I just can't dismiss the fact that I am scared there are other things lurking. I'm told that mammos and ultrasound can still miss some things. I think I will only get peace of mind with an MRI. Just wondered if others had routinely had one? Sue

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

    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

  • NicolaSue
    NicolaSue Member Posts: 111
    edited March 2017

    Melissa, do you always have to have contrast injected with a breast MRI? I'm in the UK and I hadn't heard of that. Sue

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2017

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

  • rosyFL
    rosyFL Member Posts: 101
    edited March 2017

    After the first year of my diagnosis, my screenings have been once yearly diagnostic mammograms and ultrasounds, twice yearly clinical breast exams. My diagnosis was LCIS with ADH with some other benign findings. I had one MRI done after my lumpectomy in 2012 and none since then.

    I would like opinions about the 3D mammogram. I had one this year, and was never asked if I wanted it, it was just assumed that since Medicare covered it, that's what I was getting. I'm very concerned about the increased radiation from this mammogram.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    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

  • NicolaSue
    NicolaSue Member Posts: 111
    edited April 2017

    Don't know if anyone can answer this question but let's see....!

    I'm in the UK and under a cancer hospital. Only just diagnosed . I will get a mammo every year.

    However under our public NHS programme you get screened annually if you've had previous problems (I have). So via the cancer hospital I will get a mammo Feb 2018. And under the NHS programme I'll also be offered a mammo this summer.

    Shall I have BOTH mammos, or is that much radiation something to worry about?


  • leaf
    leaf Member Posts: 8,188
    edited April 2017

    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.)

  • rosyFL
    rosyFL Member Posts: 101
    edited April 2017

    The only time I had a mammogram twice in one year was the first year I was diagnosed. After that, so far its been once a year, with ultrasound and twice a year clinical breast exams.

    Does anyone know if our daughters are at higher risk because of our LCIS?

  • NicolaSue
    NicolaSue Member Posts: 111
    edited April 2017

    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

  • leaf
    leaf Member Posts: 8,188
    edited May 2017

    Hi rosy and NicolaSue. I agree with NicolaSue. Unless we have had genetic testing and know we have faulty gene(s), we don't know if our daughters are at increased risk. They have little idea what the risk of breast cancer is for each one of us with LCIS.

    But, unless you have other risk factors such as a deleterious gene, significant radiation exposure (such as lymphoma TREATMENT - chest irradiation- much more than a simple chest Xray; lived near Chernobyl), or have a VERY significant family history (some families have almost EVERY woman in EVERY generation get breast and/or ovarian cancer), then probably less than half of classic LCIS women will EVER get breast cancer.

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