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Topic: Scared by scan results I wasn't told about.

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Apr 29, 2021 07:02PM

zucchini wrote:

Last month, I had a lip droop and spent the weekend in the hospital. I had both a ct and mri and was told at the time (by the hospital staff neurologist/oncologist) I was all clear. No mets, no stroke. Probably a palsy or neuropathy. My oncologist scheduled a 2 month mri follow up. I didn't think much of it until I went to print up the reports for my records. The scan records indicate a lot I don't understand but it looks very concerning. They weren't all clear. There's a lung nodule. Several enhancements on the mri in the leptomeningeal area and choroid plexus. No masses detected. My tonsils are low. I'm just scared. Why would they say it was all good, then schedule a follow up, and never explain any of it to me?

I already called my nurse navigator who is forwarding it all to my oncologist and asking for the oncologist to call me and help me understand. I know nobody besides my team are qualified to really tell me what's going on. But I'm terrified and having a hard time coping.

I know nothing can change what's there or not there. I'm not even sure what I'm asking for here.

But any help or advice would be appreciated. Especially until I can hear from my oncologist.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI
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Apr 29, 2021 08:54PM 1openheart wrote:

I just wanted to say hello and let you know that someone will surely come along soon that can give you some insight into what those unknown words on your report may mean. I imagine that you felt your heart in your stomach as you started to read. I told someone else in an earlier post that I try my best not to worry about things that I can't change because that worry doesn't help anything and it is though I have lived through it happening even if it all turns out ok in the end. I hope that you get answers soon, hopefully tomorrow so you won't have to wait over the weekend. I find it helps to stay busy as I wait. Take care and sending calming energy to you.

"The wound is the place where the light enters you." ~ Rumi Dx 4/28/2011, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 6/14/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left; Reconstruction (left): Nipple reconstruction
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Apr 29, 2021 10:03PM zucchini wrote:

Thank you for the reply.


I appreciate it so much. And you're right. Worrying won't help a thing. Thanks for your kind supportive words. And the calm.

Just gotta be in the moment. That's all we really get anyway. ❤

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI
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Apr 29, 2021 10:20PM AliceBastable wrote:

Zucchini, Lung nodules are very common and as long as they're small and don't change over time, they usually don't mean anything.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Apr 29, 2021 10:55PM zucchini wrote:

Thank you for the reassurance, AliceBastable. I really appreciate your time and reaching out.

The nodule was listed as small. And the notes said standard treatment was no follow up if no risk and 1 year optional ct if there were risk factors. I think a lot of that one was seeing it listed when no doctor had mentioned it to me at all.

I keep trying to distract and reassure myself about it. Thank you so much for taking the time to help.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI
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Apr 30, 2021 02:44AM AliceBastable wrote:

I think mine wasn't mentioned the first time I was scanned as a pre-op for my lumpectomy - but I had extra prizes like an aneurysm and kidney cancer show up so a tiny lung nodule wasn't all that important. I think my oncologist mentioned it after a scan a few months later. That was almost three years ago. She told me at my last visit I should get a yearly CT just to make sure it stays small, but that those small ones aren't usually anything to worry about. But I'm kind of a cancer magnet so my doctors keep a closer eye on me.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Apr 30, 2021 01:17PM zucchini wrote:

I'm so sorry you've had to go through so much. I hope that both of us stay free of any more unwelcome surprises.

I still haven't heard back from the office. I don't know why I feel I wouldn't be as terrified if it didn't involve my brain. But there's nothing I can do.

Thank you so much again for reaching out and sharing with me. I appreciate it beyond words.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI
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Apr 30, 2021 02:14PM LivinLife wrote:

Hi zuchini! I have two lung nodules - well that was several years ago so possibly there are more now. As Alice said nodules, lung and elsewhere are often accidentally found and typically not problematic. I had a follow up CT about 8 months after the CT that found those when looking at something else. Near no change so haven't been scanned since. I have several bilateral thyroid nodules.... a few ultrasounds on those and same thing so no more scanning in about 4 years now.... I would recommend you get rescanned in a year just to make sure no change. Glad you contacted your onco on all the things you're concerned about. Hopefully you hear soon....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Apr 30, 2021 08:36PM 2019whatayear wrote:

medical jargon can sound scary even when it’s really nothing concerning . The report notes anything notable but it doesn’t mean it’s anything cancer per se.


5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Apr 30, 2021 09:30PM - edited Apr 30, 2021 09:32PM by Monarchandthemilkweed

hi! You stated your tonsils were low. Do you mean your cerebellar tonsils? Because my daughter has a condition in which her cerebellar tonsils herniate into her brainstem. It's not at all related to cancer. It causes headaches. Mostly we just monitor. I can't say much else about your other concerns but did want to let you know about the cerebellar tonsils are not much to worry about.

Good luck

Sarah, Chek2 positive Dx 3/11/2021, IDC, Left, <1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/9/2021 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/27/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 1, 2021 11:57AM zucchini wrote:

LivinLife, thank you. The nodule is small. And the notes on the report say an optional rescan in a year is the usual recommendation for at risk patients. I really appreciate your reassurance. And I hope you stay well.

2019whatayear, thank you. It's reassuring to be reminded that it is just what's noted. And could be something else or nothing to worry about.

Monarchandthemilkweed, thank you. Yes it is the cerebellar tonsils. Thank you so much for sharing your experience and the reassurance. I appreciate it so much.

My nurse navigator did get back to me but my oncologist was out yesterday, too. Her RN looked over my scans and said she didn't see anything but nobody could answer my real questions about the enhancements seen on mri. I'm still in active treatment and was already scheduled to see my onc this coming week. Having to wait and having nobody able to tell me what those may mean or why I was scheduled for another mri is still nerve wracking. I feel a lot better about understanding the nodule and tonsils, thanks to you all here. But managing the anxiety over the rest is going to be something this week as it looks like I won't get any real help or answers until my scheduled appointment.


May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI
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May 6, 2021 01:34PM zucchini wrote:

Hi all, thank you again for all your responses. My oncologist has pushed up my follow up mri. And we'll be adding follow up ct scans because all of this has raised the concern level.

You were right about the lung nodule being a minor concern but still something to watch. The cerebellar tonsil is just how I was born. Atypical, but it has nothing to do with my cancer.

The other findings are a bit concerning but we just don't know. The plan is, based on the results of the follow up mri, to go from there. It could be a virus, inflammation from something, or mets. My presentation is atypical so the plan is to investigate and raise the level of attention we're paying to the state of how I am. And keep hoping and praying.

Thanks again for reaching out and showing such care and concern. It meant and means the world to me.

May 2020 DCIS both sides, atm gene, July 2020 BMX, July 2020 IDC 2a, er+, pr-, her2+, Aug 2020 TCHP chemo & targeted therapy. Dec 2020 radiation r chest and lymph nodes, Feb 2021 ovarian suppression & AI

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