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Topic: Chemotherapy

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

Posted on: Jul 7, 2021 08:20PM

Kszilvia wrote:


I am so confused and I am not sure what to do.

Up to now I was supposed to be an easy case.

Stage 1, 1cm tumour, ER+, HER2-, age 49.

However my Oncotype score came back 24, that is on a higher midrange considering my age and I am still premenopausal.

Now my doctor suggesting chemotherapy.

However my medical oncologist is not as concerned. He said I have most likely 87% chance the cancer won't come back. The middle strong chemo would give me additional 6%, the lighter chemo 4-5% additional reassurance.

My surgeon oncologist is concerned because of the Oncotype result and he is worried that I might have recurrence or metastatic cancer from the loose cancer cells in my body.

I heard and read about research that said chemotherapy is not very useful for lobular cancer.

Everything sounds so confusing.

Anyone had a similar issue?

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Jul 7, 2021 08:31PM moth wrote:

my bias is always to chemo - & esp the younger you are - because in my opinion there is less risk from it than from not doing it. Metastatic recurrence is fatal. I went into my first appointment with the MO ready to fight to get chemo. I would have had to get a super low Oncotype to be talked out of it.. but it all turned out differently anyway in my case. But I would also prefer to know that I had thrown everything possible at it & have no regrets. Others are more comfortable skipping chemo if given the option. Only you know what your personality is like.

I hope Beesie will chime in because there is another tool that your doctor can access called RSClin which combines Oncotype plus age and other factors and gives more modelling about outcomes but she knows more about it. I think any dr that ran the Oncotype can access that tool.

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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Jul 13, 2021 04:02PM Moderators wrote:

Hi again kszilvia,

We're popping in to post on your thread to "bump" it back into Active Topics, in the hopes other helpful members will weigh in with their experiences and advice. We hope this helps!

Let us know if there's anything else we can do to assist you!

--The Mods

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Jul 13, 2021 08:52PM Kszilvia wrote:

thank you so much for your help!!!!

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Jul 17, 2021 04:08PM momand2kids wrote:

I had a similar diagnosis and I was a little younger... however my surgeon and onc were both pro-chemo for me-- their feeling was I was young and healthy and I could tolerate it well. My oncotype score was something like 24-26. It did not take me long to decide to do it-- I knew myself well enough to know that I would worry if I did not do it. But everyone is different on this- I wanted as close to possible to 100%- which of course no one gets. but I think in the end, I had a 7% chance of distant metastis. Of course nothing is guaranteed--- I think it is really about your tolerance for risk. It is a tough place, the gray area, but you do have options. All the best

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Aug 16, 2021 09:13PM - edited Aug 17, 2021 08:23PM by skv0123

I am so sorry.

I had a Grade 2, 2cm tumor in my right breast. I had a BMX & reconstruction. I saw 2 different oncologist. One said chemo was an option & they would consider it, the other said it was an option, but they didn't recommend it due to the minimal benefit due to my low EndoPredict Score.

I decided to not get chemo. If I do have a recurrence, It's not because I didn't have chemo. It's because my cancer came back. Whatever you decide, if ir were to come back, it doesn't mean you did something wrong. I know people who have had chemo, radiation, Mx, etc & it came back & those who had a lumpectomy & radiation & it didn't & vice versa. I think sometimes I was thought & hoped that my choice had a guaranteed outcome & the sucky part is that it doesn't.

I think understanding your choices, trusting your team & discussing your options with those you trust etc. is so important.

the oncologist I chose was the one who did not recommend chemo. She was more focused on endocrine therapy & shutting down my ovaries. And, she was able to discuss with me the pros, cons, etc. and she explained the reasons for her decisions. I made the most honest & informed decision I could at the time.

Best of luck!

ILC R breast, 2 cm, 0 nodes, Grade 2, Diagnosed 6/2019, double mastectomy, tamoxifen, Aug 2020 oophorectomy
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Aug 31, 2021 05:26AM MayKeeble wrote:


I would be interested to hear from you and your decision as I am facing the same decision now

regarding Chemotherapy. My studies have suggested if you are lymph node negative (I am not) that chemotherapy

can be avoided!

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Sep 13, 2021 11:19PM LillyIsHere wrote:

I was node-positive and I was recommended no chemo and no radiation. I was told ILC grows slow and doesn't respond well to chemo. I had an oophorectomy and I am currently on letrozole.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy

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