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Help with Abbreviations

Topic: feeling helpless, would love input.

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 10, 2021 02:28PM

Eric9909 wrote:

My mom had her UBX on 3/1 and today we had our first visit with her oncologist. The meeting was less than 5 minutes long and she didn’t seem interested in really answering any question we had for her. All she said was that they would run tests (Oncotype or others I assume but she didn’t specify) to find out the probability of a recurrence then we’d talk about treatment. We’re suppose to get a call in about 3 weeks with results.

To me this is so frustrating. Why couldn’t they do tests from the get-go? I was also under the assumption that chemo was recommended for anyone with positive nodes? My mom had 9 taken out and as you can see 2 SLN were positive for cancer. I wish she would’ve asked what we thought or anything at all. They also said radiation would try to be avoided because she had a direct to implant reconstruction. So at this point it seems all she’s going to be offered is hormone therapy? I am not happy I thought with node involvement we’d treat it more aggressively. We’re also waiting for insurance to approve scans so we can be sure cancer isn’t anywhere else in her body.

I guess I just want to know if I’m frustrated over nothing and being unrealistic. Above everything I hate the idea of having to wait while there’s potentially still cancer cells in my mother’s body that could start to grow again somewhere in another organ or bone and no treatment is being offered. I’m thinking of going for a second opinion but we live in a relatively city and hours away from a cancer center hospital.

Thanks in advance to anyone who took the time to read or reply.

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 10, 2021 02:54PM moth wrote:

Hi, I would try to relax. Waiting 3 weeks is not unrealistic. If she's had the primary tumor removed, the greatest risk is now gone. If there are any small circulating cells, those will take time to become viable growths - if they ever even do.

The Oncotype could still show that she will not benefit from chemo so it's reasonable to wait. https://www.oncotypeiq.com/en-CA/breast-cancer/hea...

"The Oncotype DX test for node-positive patients

The test's predictive ability in the node positive setting was validated in the two-arm prospective retrospective clinical trial SWOG-8814 (comparing CT+ Endocrine Therapy (ET) versus ET alone)8. Results from this trial are summarized in the graphic below. Patients with one to three positive lymph nodes and Recurrence Score results 0-17 are consistently shown to have excellent outcomes when treated with ET alone8,10,12,14,16. Real-world observations22 suggest that 60% of HR+, HER2- patients with one to three positive nodes tested with Oncotype DX have a Recurrence Score result 0-17 and hence could be spared chemotherapy."

As far as radiation, again they might want to consider Oncotype to see how aggressive to be but you can see here that after mastectomy, it isn't given routinely except in some cases https://www.breastcancer.org/research-news/effect-...

One thing I'd suggest to you is to find out how to get copies of all your lab, pathology, surgical reports and MOs reports. It will probably be good for you & your mom to read through them & make sure it's the same as what you heard in the appointnments. You can also often arrang a virtual 2nd opinion through email or zoom so if you're worried about being on the right track, that might be an option.

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Mar 10, 2021 03:21PM - edited Mar 10, 2021 03:23PM by Beesie

Eric, I know you've posted several times but I don't remember the rest of your mother's story or the path that got her to where she is now. So I'll just give answers to the very specific questions you asked here.

"Why couldn't they do tests from the get-go?" The Oncotype test requires that tissue samples be sent to Genomic Health. The tissue samples need to be of a certain size. I don't know what type of biopsy your mother had but often biopsy samples are too small, and regardless, surgical samples are preferred.

"I was also under the assumption that chemo was recommended for anyone with positive nodes?" No. For those with ER+ / HER2- cancers, there is a version of the Oncotype test that is used for node positive (up to 4 nodes, I believe). If the Oncotype score is low, then chemo is not recommended. If the score is high, chemo is recommended.

"They also said radiation would try to be avoided because she had a direct to implant reconstruction." Who is "they?" Did you see anyone in addition to the MO? From this statement, it sounds as if the decision is not made yet on rads. Perhaps the MO will be consulting with an RO. If your mother wants rads because of the 2 positive nodes, she should say so. If they are trying to avoid rads to not mess up the reconstruction, she can say if she doesn't want the reconstruction to be part of the consideration.

"So at this point it seems all she's going to be offered is hormone therapy?" Not neceessarily. It depends on the Oncotype score and it sounds as though rads is still under consideration.

"We're also waiting for insurance to approve scans so we can be sure cancer isn't anywhere else in her body." I gather from this comment that the MO recommended scans. Which ones?

I understand the frustration but part of it is because you are expecting answers more quickly than they can come in, and because you are jumping to conclusions which may or may not end up being accurate. As for your concern that some cancer cells might still be in your mother's body, that is a risk for anyone diagnosed with invasive breast cancer. The treatments recommended are based on an assessment of the magnitude of this risk, i.e. high risk, chemo is recommended, low risk, endocrine therapy alone is used, etc.. This is because unfortunately, the treatments all come with their own risks and side effects, many that just affect quality of life, but some that can be quite serious. I don't know your mother's age but as we get older, the risk of serious side effects from treatments increases. So treatment decisions are a careful balancing act.


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 10, 2021 03:36PM MinusTwo wrote:

Eric - both Moth & Beesie have given you excellent information.

About radiation - you can meet with an RO. I would just add that I DID have 5 weeks of daily radiation with implants in place. It didn't hurt the implants at all. It just ended up that skin & muscles are "tighter" so that side rides higher.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 10, 2021 04:04PM - edited Mar 10, 2021 04:15PM by Eric9909

Moth- Thank you for that excerpt it really helps me understand more and it's good to know that it isn't an unreasonable amount of time to wait and worth waiting for!

Beesie- I greatly appreciate your detailed responses and answers! To answer your questions: her surgeon and plastic surgeon were the ones that made the comment that we should “try to avoid radiation if we can". The general surgeon was also the one who ordered the scan, I confirmed it with the oncologist today. I believe it's an MRI but will have to confirm when we get the call to schedule it.

MinusTwo- That's great to know! She does have an appointment with an RO but my fear was that she'd be discouraged from radiation just based off on the reconstruction she had. Ultimately it's her choice and her body but me as her son I was a little bummed out because I just want to get us the best chances at no recurrence.

I appreciate all the responses immensely. As you could tell I'm still very ignorant to many things and aspects of having to go through something like this. I appreciate you all and anyone else who might reply for being so patient with me.


Edit: just wanted to edit to say I also was concerned about tumor size. I know 4cm isn’t the biggest but I thought it was big enough that it might also be considered when choosing whether or not chemotherapy would be beneficial

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 10, 2021 04:52PM Beesie wrote:

"her surgeon and plastic surgeon were the ones that made the comment that we should "try to avoid radiation if we can"."

Ah, so this wasn't from the discussion with the MO yesterday. That's very relevant because, frankly, it's not the surgeon and plastic surgeon's decision. They are just voicing an opinion, probably because they don't want the rads to possibly mess up their work, from a cosmetic/appearance standpoint. It's the MO and RO who recommend on rads.

An MRI? That seems odd. Breast MRIs are often done prior to surgery to give the surgeon the most complete picture possible before operating. After surgery, if clean margins were achieved and if the reason for the scan is to check for mets within other parts of the body, usually a bone scan or CT scan is done. Less often, a PET scan. I suppose an MRI could be used too, but I don't think it's commonly used for this purpose. MRIs are not easy because the patient is stuck in a long narrow tube. When imaging just the breast area, an MRI can run 45 minutes. For the whole body, I imagine it would be longer. That would not be a pleasant experience for most people. I'm just speculating here, so maybe someone who has had an MRI for this purpose will comment.

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 10, 2021 05:00PM Eric9909 wrote:

Beesie- It could very well be a CT or bone scan. I’m not entirely sure since I wasn’t present when my mom had her meeting with the surgeons and I only know about the comment they made in regards to radiation because my mom showed me her appointment notes which included that.

Also, does tumor size matter? Say her Oncotype score is low, would the tumor size of 4cm also be taken into consideration and make a difference? I’m trying to research that currently I don’t know if you might have some insight on that. Either way I appreciate the reassurance!

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left
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Mar 10, 2021 05:17PM moth wrote:

Eric, have you seen the NCCN patient guidelines for breast cancer?
https://www.nccn.org/patients/guidelines/content/P...

p 47 goes over the radiation recommendations

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Mar 10, 2021 05:44PM Eric9909 wrote:

I hadn’t Moth, but I’ll defiantly give it a thorough read! The whole guide actually it looks extremely informative. Thank youu ((:

Son&Translator . Dx Bellow is Mom’s: Dx 1/19/2021, LCIS/ILC, Left, 4cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Surgery 3/1/2021 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left

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