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Topic: MO with 2 different opinions on chemo

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

Posted on: Aug 4, 2019 01:43PM

skv0123 wrote:

My local MO ordered the EndoPredict which shows overall risk 3.2 which of course is right in the middle of the 1-6 scale although the test considers me "low risk." It shows 8.9% chance of distant recurrence 0-10 years, 2.7% benefit of chemo at 10 yrs & 7% risk late distant recurrence at 5-15 years.

I had a BMX July 3, 2019. I had 2.7 cm tumor of ILC with pleumorphic features, 0 of 3 nodes involved. Left breast was had no evidence of cancer but metaplasia, fibroid disease etc. I am currently on Tamoxifen for 3 mths as I take this all in & slow down a little per 2nd oncologist who does not recommend chemo. Planning to do ovarian suppression with AI in 3 mths.

Local oncologist got results & called me to discuss after I got 2nd opinion. I shared 2nd opinion ain't her & shesaid they would "give me chemo if "I wanted it" due to my age & my being at the "high end" of low risk. Second opinion at a larger hospital with cancer center said they would not encourage chemo due to benefit vs risk. Second oncologist specializes in breast cancer, local one treats it a lot . I feel so confused. I posted on chemo board too.

UGH

Thanks for listening and any thoughts? What is different between EndoPredict & Oncotype

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Aug 5, 2019 10:39AM momand2kids wrote:

Hi

I don't know the difference between the two tests-- have not heard of endo-predict. In the end, on these decisions, it is ultimately up to you. How well will you sleep at night if you do or do not chemo? Are you someone who worries alot about things that may be unlikely to happen but could still happen? I think slowing down is a good idea- and between tamoxifen and ovarian suppression you will be doing alot. Maybe a 3rd opinion just to help you get to a settled place. For what it is worth, I had 2.5 cm lumpectomy, no nodes- mid-range on oncotype- I was young and had young children and very healthy-so I did 4 rounds of chemo- the tailor x trial results recently confirmed that for my data I made the right decision-- but I also knew that I would worry that I had not done enough- and I don't do that now because I did all I could. It was challenging but not impossible and I was able to work through most of it-- of course, everyone reacts differently.


But everyone is different and there are people who can skip chemo and not worry about it--- it is somewhat of a data driven decision. I can tell you that I was treated at Dana Farber and if they had said don't do chemo, I would have skipped it! I also did an AI and lupron for ovarian suppression for 3 years since I was pre-meno. best of luck-these are hard decisions.

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Aug 5, 2019 01:56PM skv0123 wrote:

momand2kids - thanks so much. These decisions are so hard. I appreciate it & May consider a 3rd opinion. Great point

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Aug 5, 2019 03:29PM nash wrote:

skv0123, momof2kids gave good advice. I also am not familiar with EndoPredict, so can't comment on that.

For what it's worth, here is my story. I share it to underscore the point that basically bc is a total crap shoot, and ultimately you have to do what lets you sleep at night. The oncologists really don't have the answers--for the most part, they are grasping at straws as much as the patients are. Especially in cases like PILC in premenopausal women, b/c the trials mainly included IDC patients, most of whom were post-meno. In my opinion, the majority of the clinical trial data is useless in a PILC pre-meno case.

2007 Age 38. 2.7 cm PILC, neg nodes. CAF x6, lump, rads. Started Tamoxifen. Lots of PLCIS left over in the boob. Oncotype 18.

2015 Local recurrence in lumpectomy scar line, while still on Tamoxifen. MX with immediate LD flap reconstruction. The surgery has left me in chronic pain and basically has ruined my life. Two oncs were split on whether I should do chemo for the local recurrence. Only one study was focused on chemo for local recurrences, and each onc interpreted the data differently. As I figured there weren't a lot of PILC premeno women in this study, I opted for no chemo, thinking I'd like to save it for down the road. My mom died of bc, so I knew that it was important to preserve treatment options as much as possible.

I had to refuse OS/AI after the local recurrence due to the side effects on top of my horrific pain and tightness from the LD flap. I did go ahead and do a revision surgery in 2016, with a lift on the "good" side.

Jan 2018 The lift masked a new 8 cm primary, with node involvement. Once it was caught, I immediately went on neoadjuvant Taxotere/Cytoxan. Mammoprint high risk.

Midway through chemo, I had to switch to Taxol/Cytoxan, due to side effects. Around that time, I was dizzy, so onc ordered a brain MRI. Surprise, surprise, brain mets.

June 2018 So now I'm Stage IV. Stopped chemo, canceled upcoming mx, and went on Ibrance/Faslodex/OS (started on Zoladex, recently switched to Lupron). I have been stable since then (as far as I know--ILC is so hard to image).

So my point just goes back to what momof2kids said--do what makes you feel comfortable. There is no perfect answer to any of the treatment choices, and quite frankly, for the most part, the cancer is just going to do what the cancer is going to do.



Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
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Aug 5, 2019 06:15PM OnTarget wrote:

We've chatted in another post. 3cm tumor, plus 3 other small ones, pleomorphic features, grade 2, ITCs in one node, clinically high risk under TAILORx, Oncotype 16.

MO was not initially thinking chemo, not even after the latest TAILORx results came out. But I opened up a dialog on it and got a 2nd opinion and both MOs ended up saying that OS+AI should be adequate, but that chemo is not unreasonable. Plus the results say that chemo has a 6.5% benefit and it is only a well supported theory that OS+AI alone would derive the same benefit.

I had an ominous feeling about my cancer from the start and I'm not usually very likely to think the worst. I think I will be happiest knowing that I put everything on the table. I just hope chemo doesn't mess me up permanently and make all these extra years of life unbearable!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 7, 2019 02:12PM skv0123 wrote:

thank you everyone for your feedback. I am going to call my MO who suggested skipping chemo & discuss more with her I remind me the reasons.

I’m not sure I’ll ever feel like I am doing enough & want to remind myself this isn’t all in my control which sucks about life in general. Thanks for supporting me during this experience

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Aug 14, 2019 05:52PM OnTarget wrote:

Skv0123, what did you decide on Chemo?

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 23, 2019 07:51PM skv0123 wrote:

OnTarget -


Hi! we've been traveling a bit. I decided no. I talked to the oncologist I have decided to stick with and she explained her recommendations for no chemo. She talked me through the ednopredict and the way it determines risk. She was on the phone with me for 30 mins & was so helpful. Thank you for checking in!!


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Sep 17, 2019 05:26PM JRNJ wrote:

Thank you all for the info and thanks Nash for your story. My bc is similar. 2cm pleomorphic ilc. 10x3x2 LCIS. All in right. Don’t know about nodes yet. Bmx next Tuesday. I’m the type that is afraid of not being aggressive enough. And my doc is not aggressive. Each biopsy was worse than the first. I found mistakes in reports. So I don’t trust what anyone says. We progressed from lumpectomy to single to double. I just can’t trust future screening. How do I have a 10 cm mass that was not caught before. And I went from grade 1 to grade 3. So as much as I don’t want to lose my hair I know if I don’t do chemo I’ll be scared I didn’t do enough. Especially when I read the stage 4 stories. So if they say you don’t need it I don’t know what I’ll do. I suspect I’ll be be in gray area and will choose it

Pleomorphic Multifocal LCIS, Extranodal Extension, Lymphovascular Invasion. TE removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 17, 2019 06:54PM OnTarget wrote:

Skyv0123- I'm glad you picked the choice that feels right for you!!

JRNJ- Good luck with choosing when the time comes. There are so many hair options (cold capping, nice wigs, partial wigs), that will hopefully make you feel better if you choose chemo. I'm cold capping and while my hair is thinning, I'm 6 weeks into TC and have a full head of hair!


Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 17, 2019 08:01PM - edited Sep 17, 2019 08:02PM by skv0123

OnTarget - thank you! Me too.

JRNJ - you may also want to seek a second opinion on surgery or labs etc.. My oncologist (who I got the second opinion from after surgery) had their pathologist look at everything.(the actual slides etc. from surgery)so I was happy to have two sets of eyes on it. Their pathokudid not consider my ILC Pleomorphic. My oncologist talked to the pathologist who emailed her the reason they did not agree with that finding & she shared it a all with me.

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