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5 year recheck at Oncology - Next Steps
I just had my last oncology appt (hopefully)!
It was a five year recheck, I had stage 2 ER+ HER- breast cancer diagnosed and treated at Mayo Rochester starting in 2018. Lumpectomy, few positive lymph nodes removed, chemo and radiation. AI before and after treatment. A Oncotype DX score was not done. When I asked about DX score years ago, provider said Oncotype DX test is used to determine benefit of chemo, and because my cancer had already spread to lymph nodes, the treatment plan should include chemo and Oncotype score would not change treatment plan.
Stopped AI in 2020 due to side effects after discussion with oncologist about risk. Per provider, my reoccurrence rate is around 15-20% without AIs. I am currently 68.
Like many patients, I asked what now?
Here is suggested plan:
- I will continue my survivorship care under the care of my primary care provider.
- Continue to do self-exams, I know my body and know what is normal and when there is a change.
- Screening with a mammograms and MRI (due to dense breast) every year. I have been obtaining mammograms and MRIs alternating every 6 months, and he said that would be reasonable approach.
- If any new concern, my primary can reach out to oncology team.
A friend asked if I felt abandoned, I said ABSOLUTELY NOT. As long as I get imaging, that is most important. My primary can order imaging and discuss results.
Breast cancer reoccurrence will always be a concern, but fingers crossed, no more need for oncology.
Laurie
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Thanks for keeping us posted and so happy with your good news!! I'm 58 yrs, lumpectomy for ILC, radiation and on Letrozole only since Feb 2023 - I had follow up diagnostic mammo a full year after diagnosis and now oncologist said regular mammos (not diagnostic as ins could be an issue?? WTH) fine yearly - no MRI as she said not specific even though dense breasts. I'm seen at Dana Farber but geez wondering if I should get second opinion or pay out of pocket for an MRI? xoxoxo
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2 ReactionsHi Laurie, that’s great news. I’m heading into year five. Mammo & MRI yearly like you. Took Anastrozole for 2 1/2 yrs. Stopped due to side effects.
I love your future plans. Mine is the same. Reoccurring cancer is always out there but it is not controlling my life. Had mastectomy in 2019 and doing well. Best of luck to you. Blessings.
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2 Reactions@semurrey
Surprised at no MRI, did you have one after initial diagnosis?
My insurance, 1st thru employer and then on Medicare / supplemental pays for my MRIs due to cancer diagnosis. They are actually picker about mamo, only one a year.
It might be worth checking with insurance company on their policy for MRIs.
Good luck
Laurie
Thanks Laurie - I'll be contacting insurance on Monday - not on medicare yet - self employed and pay $1,000 a month! I did have an MRI pre -surgery which showed my ILC to be bigger than they thought so definitely was a great supplemental. I hate to have to pay out of pocket but could pay down monthly. Will circle back and thanks again for weighing in...xoxoxox
I am so happy you have made it to your five year check!! I don't know anything about breast cancer care or follow-up but I just wanted to share the happiness you must have at being at five year. I truly hope I can write that my husband made it to a five year check in three more years. 🙂
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1 ReactionI had DCIS 16 yrs ago in right breast and had a Quadrectomy, 30 radiation treatments and Tamoxiphen which I had to stop after 2 1/2 yrs due to side effects (memory, word retrieval, joint pain). After 5 yrs I saw my Oncologist every other year and continued annual Mammograms and mri's. In February, I was diagnosed with new cancer in the contralateral breast... Not a recurreance. Treatment was surgery, 15 radiation treatments w daily boost and taking AI anestrozole. I'm having my 6 month mammogram next week. I'm glad I maintained follow up with my oncologist over the years but know everyone's journey is different for their unique history. Best wishes for continued good heslth
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6 ReactionsHurray for the 5 year mark. You are beautiful and such a super support for all of us. Hope to hear 5 years later you are still cancer free !!! Sending hugs your way keep up the good work keep getting checks.
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2 ReactionsThanks for sharing and sending best! May I ask if you had alternating MRI and Mammo annually? I did finally get my oncologist at Dana Farber write for a MRI as it would be most reassuring as I’m a year out with invasive lobular and very dense breasts. She doesn’t think MRIs are necessary but a friend who is a breast radiologist at regional hospital said with my family history as well the MRI would be best study. M oncologist mentioned the contrast isn’t all that great for us but I can’t find any long term downside! Have you kept up with scans-sounds like it! Xo
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2 Reactions@semurrey
Glad they ordered an MRI for you. My previous and future plan to watch for new occurrences is to alternate MRI and Mammograms every 6 months. They do the MRI with contrast. They take bunch of images and then inject contrast and take more images. I have never had problem with contrast though drink lot water for next 24 hours to flush system.
Laurie
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3 ReactionsI don't understand oncologists saying a MRI "could be an insurance issue" and you will have regular mamograms. I have heard from many on this site that Dana Farber has a well-known Dr that specializes in ILC. Search for Dr. Metzger on the search bar at the top of this page and make an appointment with him or start looking for another oncologist. I'm seeing my third Oncologist tomorrow and hope she is going to treat ILC differently than the others. Because of a few groups, I knew more about ILC than the first 2. I wonder if the reason for lax testing could be that the agreed upon charges for insurance reimbursements for MRIs and advanced mamograms is way lower than the hospital receives from insurance?. I look at my bills and have even asked how the fees could be so different. I wonder if the hospital writes off the difference. My lumpectomy had a way lower reimbursement than the amount of the actual hospital charge. I hope you get better testing. We have to really watch out for ourselves. By the way, my first oncologist argued with me that there is no such thing as a contrast enhanced mamogram. I had one and saw the report the night before I saw him. I left his office knowing I was moving on. He also said a yearly mamogram only. My insurance agent said I should try to find a Dr to write a script for a PET scan Leaving me to believe it is not thhe insurance company. Hugs and keep trying to get what you deserve