Join Us

We are 223,107 members in 83 forums discussing 162,829 topics.

Help with Abbreviations

Topic: Oncologist didn’t even tell me about lung nodule

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Jul 21, 2021 09:19AM

TurboKitten88 wrote:

I’m three years out from treatment for stage 2 TNBC. Last year I had a ct scan due to some odd symptoms which I was told came back all clear. After looking though my reports I see mention of a 6mmx5mm lung nodule. I was kind of disappointed no one even mentioned it. And also a little upset that we were not rechecking it. It’s been 11 months since my scan and I am insisting on a rescan to make sure there is no growth. Even though they are telling me “there is no reason, so insurance won’t pay”. I kind of feel let down. But I’m gonna get the scan out of pocket of course. Am I silly for wanting that peace of mind? Everyone else I talk to said they get every three month scans when a lung nodule is found and they had previously had bc. Just looking for thoughts. And of course hoping for all clear results.

Dx 8/11/2017, IDC, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 9/15/2017 AC + T (Taxol) Surgery 1/25/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/26/2018 Whole-breast: Breast
Log in to post a reply

Page 1 of 1 (15 results)

Posts 1 - 15 (15 total)

Log in to post a reply

Jul 21, 2021 10:44AM ctmbsikia wrote:

No you are not silly. I am not sure of the criteria of checking nodules. I thought 6mm or larger required follow up, or maybe it's 9mm? They also go by your risk %. You would think having a prior bc diagnosis raises the risk to qualify for annual screening. Anyway, just my thoughts, good luck. I'll be going in for one of these soon.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
Log in to post a reply

Jul 21, 2021 10:51AM ARmom4 wrote:

TurboKitten88:

That's terrible. Sorry you're going through this. Yes, definitely figure out a way to get a new scan. "There is no reason" is not acceptable. This is something that could be very important. I would probably even switch oncologists if there's no reasonable explanation for not telling you. Also, always ask for copies of your scans or at least the report. That way, you can read it for yourself. The law says you have a right to all of your medical information. Good luck going forward!

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/11/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/27/2020 Herceptin (trastuzumab) Chemotherapy 3/27/2020 Taxol (paclitaxel) Chemotherapy 4/17/2020 Taxotere (docetaxel) Hormonal Therapy 5/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/1/2020 Prophylactic ovary removal Surgery 3/3/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/8/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jul 21, 2021 12:18PM TurboKitten88 wrote:

Thank you guys. I even checked in with some of the ladies in my group and they were shocked as all of them have been having follow ups just to make sure. Also two of them did turn out to be lung mets.....so thats weighing on my mind of course. I have a almost 2 year old.....i want to know for sure even if its just 5% chance. Told my husband i am considering switching over this cause im so upset. They are supposed to call me today or tomorrow to set it up.

Dx 8/11/2017, IDC, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 9/15/2017 AC + T (Taxol) Surgery 1/25/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/26/2018 Whole-breast: Breast
Log in to post a reply

Jul 21, 2021 01:17PM AliceBastable wrote:

I have lung nodules (can't remember the size right now) and because I get abdominal scans for something else twice a year (once a year from here on), my MO piggybacks a chest CT onto those scans. But she's also told me that most people have some activity in their lungs and we just don't know about it until we get scanned for something else. I think she only tracks mine because I'm kind of a crap magnet when it comes to cancers.

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
Log in to post a reply

Jul 21, 2021 01:46PM - edited Jul 21, 2021 01:46PM by moth

They absolutely should have mentioned it. I guess this is an example of where getting copies of your own radiology reports etc is worthwhile (they should be in portals now for mos US pts.)

Otoh, most early stage breast cancer pts here in Canada are not scanned at all and the offical US ASCO guidelines are to not do scans unless other symptoms call for a scan. Routine scans are not evidence based for most pts.

But I agree that now you know something is there it makes sense to check it at least once more and see what it is. I did just yesterday read this in a study on oligometastasis "Finally, an additional challenge regarding pulmonary nodules detected by CT is the relative high prevalence (about 25%) of benign (micro)nodules in the general adult population,32 and the relative poor performance of radiologists or clinicians in detecting and characterizing such nodules.32,33" https://ascopubs.org/doi/full/10.1200/JCO.21.00445

I hope your scan confirms that it's a big fat nothing to worry about!

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Log in to post a reply

Jul 21, 2021 01:57PM muska wrote:

Radiologist report should have an “impression” section and recommendations. What’s on your report? Did the radiologist recommend a follow-up or not?

Size is just one of the factors they take into account, there’s more to it than just size. If the radiologist didn’t recommend a follow-up your MO wouldn’t mention it to you.

If you are concerned you could get a second radiologist opinion on the original scan.

I have multiple small nodules in both lungs and have taken scans for second opinion at the beginning of treatment.

Best.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
Log in to post a reply

Jul 21, 2021 03:50PM ctmbsikia wrote:

You may or may not find this interesting. A recent study Feb. 2021 showed not all radiologists are following the same guidelines for follow up. Also, the guidelines have been recently updated. If you scroll down the page a bit you will see those. I would also look up that last CT scan to see the impression and what the recommendation is.

Link:

https://www.diagnosticimaging.com/view/variation-e...



Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
Log in to post a reply

Jul 21, 2021 04:04PM LivinLife wrote:

Lung nodules are common findings on scans as we get older AND I agree with you that you should have been informed about it!! Esp. with your cancer history!!! I have a couple lung nodules and these were re-scanned several months later when found incidentally on HRCT for something else. Wishing you well as you pursue this....

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
Log in to post a reply

Jul 21, 2021 05:02PM Trishyla wrote:

I just went through the same thing with thyroid nodules. I found out that I had some nodules that had been seen on a scan in 2017. Nobody had ever mentioned them to me. The only reason I even know now is because my new, wonderful primary care doctor asked about what was done to follow up on them. Absolutely nothing.

She sent me in for a follow up scan, then referred me to an endocrinologist when they found they were still there. Fortunately, they turned out to be cysts, but I still should have been told.

Good luck, TurboKitten88. As a fellow TNBCer, I know anything that pops up in the first five years is scary as hell. Here's hoping for benign results.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
Log in to post a reply

Jul 21, 2021 11:18PM 2019whatayear wrote:

This is very frustrating. I hope you can quickly get a scan covered by insurance to make sure the nodule is the same size. Given your history it’s crap that you didn’t have a follow up scan months ago just to rule out anything.

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
Log in to post a reply

Jul 22, 2021 04:08PM SummerAngel wrote:

I have a lung nodule that was never mentioned, either. I didn't even know it was there until about 3 years after my BC when I had a CT for a different reason and the doctor told me that my lung nodule was unchanged. I said, "What lung nodule?" Ha. It was small so there was no recommendation for a follow up.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
Log in to post a reply

Jul 22, 2021 05:51PM TurboKitten88 wrote:

thank you guys for all the stories. I got scheduled for the follow up ct to just check. I think I’m just really needing for my sanity to know for sure it’s not cancer. Even if the chance is like 5%. I have my toddler and I’m still so messed up over cancer. I just have to know. I just hate it took me being so pushy. They told me it wasn’t necessary and hope I was ready to pay out of pocket cause it’s not needed and insurance won’t help. Kind of sad.

Dx 8/11/2017, IDC, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 9/15/2017 AC + T (Taxol) Surgery 1/25/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/26/2018 Whole-breast: Breast
Log in to post a reply

Jul 22, 2021 08:51PM edwards750 wrote:

I went to a clinic because of my shoulder pain. I chalked it up to lifting my twin grandsons but decided to check it out anyway. We all know how it is with a BC DX every ache and pain is troublesome.

Anyway this PA ran tests for pneumonia and said they were negative so she ordered a chest X-ray. It came back with a lot of lung modules. She freaks out and said I needed to go back to the cancer clinic where I had my treatment. I had had 33 rounds of radiation. She also said it could be scar tissue. I said I would wait for the radiologists report. She said he would agree with her. He didn’t and said the X-rays were normal. That was 5 years ago.

Lung nodules are very common.

Good luck!

Diane

Log in to post a reply

3 hours ago TurboKitten88 wrote:

My CT scan is tomorrow. I will update after i get my results. In case anyone comes looking at this thread in the future :)

Dx 8/11/2017, IDC, Right, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 9/15/2017 AC + T (Taxol) Surgery 1/25/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 2/26/2018 Whole-breast: Breast
Log in to post a reply

2 hours ago 4kids4dogs wrote:

Good luck to you tomorrow!!!! Please post and let us know ...

Page 1 of 1 (15 results)