What is considered expected follow-up?

Posted by sedonadreaming @sedonadreaming, Apr 23 2:11pm

I am s/p ILC diagnosis, s/p SMX with immediate DIEP reconstruction 3/28/24. Early stage and no lymph involvement. Strongly ER+/PR+/HER2-.

I met with med onc. last Wednesday and am given the impression that if Oncotype is done (pending insurance) and numbers favorable, she'll put me on an aromatase inhibitor and yearly mammogram. Follow bone density since I am already in osteopenia category.

This seems very simplistic but might be reality. Is there anything else that is considered standard care for someone in my scenario beyond this? I asked if there would be any consideration for ultrasound or MRI for native remaining breast and was cut off almost instantly with "yearly mammogram". I have very dense breasts and always expect the follow-up letter after Mammo saying come in for an U/S.

I guess I don't know what to ask or ask for without knowing what is expected. Anyone?

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Sedonadreaming, you might ask about PET/CT surveillance over the following years. My cancer was different than yours but I've been saddened by distant metastasis of breast cancer among friends. I struggled to understand how it could happen. But follow-up especially after five years seem to be non-existent. I've had to press for the imaging that would detect it. A mamogram can't detect brain metastasis. The oncotype will help determine where a metastasis is most likely.
Hello to your handsome devil and best luck

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Umm, I'm going to offer a different opinion than the above as I feel it's a bit aggressive. Early stage with no lymph involvement I wouldn't be concerned with any kind of mestasis. I did have a petscan and brain mri, but my initial biopsies showed cancer in the breast and the lymph node tested. You don't have lymph node involvement. Now I do disagree with some of the rest. My mammo technician told me that those patients with a cancer diagnosis usually have their oncologist order the diagnostic mammogram ( or whatever other term it might go by) for the first five years. If your oncologist is reluctant, it might be time to find a new one. Also, having osteopenia (as I do as well), you should probably have some kind of treatment for that as AI's are known for possible bone loss. I'm on Medicare, and it does not normally pay for bone building drugs for osteopenia; but with the AI treatment it does.

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I though ultrasounds were the standard for dense breasts? BTW, I am in Sedona, AZ...

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@thora902

I though ultrasounds were the standard for dense breasts? BTW, I am in Sedona, AZ...

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@thora902 |

It depends on clinic, I have dense breast and only have ultrasound if see something on mammogram. With history of breast cancer, I alternate every 6 months between MRIs and Mammograms.

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@roch

@thora902 |

It depends on clinic, I have dense breast and only have ultrasound if see something on mammogram. With history of breast cancer, I alternate every 6 months between MRIs and Mammograms.

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Are rotating MRI and Mammograms standard of care post-cancer in your state or is that something you and your oncologist agreed to? The reason I ask is because somewhere along the line, I had heard or read this regimen s/p ILC for remaining native breast tissue and now can't find anything to support that.

Edited to add that I just now re-read the American Cancer Society recs and they specifically say there isn't enough evidence for or against use of MRI for screening for people with history of ILC, only for those with high-risk factors. Having had BC apparently doesn't make you high risk.

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@sedonadreaming

Are rotating MRI and Mammograms standard of care post-cancer in your state or is that something you and your oncologist agreed to? The reason I ask is because somewhere along the line, I had heard or read this regimen s/p ILC for remaining native breast tissue and now can't find anything to support that.

Edited to add that I just now re-read the American Cancer Society recs and they specifically say there isn't enough evidence for or against use of MRI for screening for people with history of ILC, only for those with high-risk factors. Having had BC apparently doesn't make you high risk.

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@sedonadreaming
My cancer was not detected on mammogram, I found the lump 6 months after mammogram and cancer had already spread to lymph nodes. . I am now 5 years from diagnosis. I discussed with oncologist about my concerns. He agreed that rotating MRIs and Mammograms every 6 months was best approach. No ultra sounds unless something is found. He documented in my medical records. I am dismissed from oncology and now my primary care provider orders the images.

My oncologist and primary are both at Mayo Rochester.

Laurie

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@roch

@sedonadreaming
My cancer was not detected on mammogram, I found the lump 6 months after mammogram and cancer had already spread to lymph nodes. . I am now 5 years from diagnosis. I discussed with oncologist about my concerns. He agreed that rotating MRIs and Mammograms every 6 months was best approach. No ultra sounds unless something is found. He documented in my medical records. I am dismissed from oncology and now my primary care provider orders the images.

My oncologist and primary are both at Mayo Rochester.

Laurie

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Because mammo saw "something" and was confirmed with U/S, it would seem she has a comfort level with mammo moving forward. Without lymph involvement, I feel like I will be stuck with just one mode of imaging, unless a miracle happens and someone publishes guidelines suggesting something different. At least I have my MRI in July (recs from pre-op MRI for "probably benign" findings on left), so at least this year won't be a fight. I just asked the initial question in this thread because beyond imaging, I didn't know if there were blood tests, follow-up bone test standards, etc. that I should be aware of. She said her main two AIs she works with for someone of my situation would be Anastrozole or Letrozole.

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I have the same very high levels er+and pr+ and her2- with 1 sentinel positive. Had lump/ radiation/ take anastrozole for 5-7 years Had oncotype testing done my was 20 percent and my ki67 was at 10 percent. Kinda of in the middle between low medium risk. Because of Al pills. They put me on fosamax(alendronate) 70 mg once a week to help with osteoporosis in my hip it help with thinning of the bones.
No chemo was offered in the beginning of my journey.

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I will also comment on mri. I believe that the FDA mandated mri for people with dense breast that you need to talk with primary doc because having dense breast it’s hard to see cancer if it close to your chest wall. Mine was close to the chest wall. Now every 6 months I’m doing a mammogram/ mri

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I met with my MO last week and was told the same - just yearly mammogram and to see either the MO or surgeon every 6 months and they would do further tests if had any symptoms. I was blown away at the small amount of surveillance. I told her I wasn't feeling well taken care of, but apparently it's the standard of care. I was diagnosed with IDC ++- , grade 3, Oncotype 9 in Nov 2023. Lumpectomy end of Jan and re-excision to get better margins early Feb. Did 4 weeks of rads in March. Now MO wants to put me on Anastozole for 5 years.

I have an appt with another MO in a few weeks since my original MO is moving to Virginia. I'm making a list of questions. I don't really want to take Anastozole. I read that if the BC metastasizes, the first line of treatment is hormone therapy but you can't take it again if you've already been on it (I think, still looking into that). That and other factors and making me lean toward not taking it. I also have dense breast so I am going to advocate for a MRI/mammogram every 6 months. If she says no, I'll ask my gyno and primary care doc.

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