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Topic: No chemo, node positive

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

Posted on: Jun 16, 2018 09:57PM

Meow13 wrote:

A BCO member would like to hear from anyone who had ILC and positive nodes with a fairly low oncodx score that did not do chemo.

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Jun 16, 2018 10:03PM Meow13 wrote:

bump for member

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Jun 17, 2018 10:44AM Dodgerick wrote:

Dodgerick wrote:

After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast (with a 40% chance of cancer also showing up in my left breast), I had bilateral mastectomies on January 26, 2018. The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and just took the sentinel lobe. I was shocked to learn on the February 7, 2018 appointment with my surgeon, that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. My ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! I completed 5 weeks of radiation to my chest wall and regional lymph nodes on May 31, 2018. I have yet to find another breast cancer survivor of ILC and DCIS with lymph node involvement, that has skipped chemotherapy and I'm really nervous about it! I would like to know if there is anyone out there in my situation, please?

...by the way, they found LCIS in my left breast in the pathology report. I know LCIS is considered "a marker" but I don't think I could possibly go though this ever again! I'm glad we made the decision to remove both breasts.

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Jun 17, 2018 02:08PM Meow13 wrote:

bump for member who wants to connect with others in her situation. ILC, lower oncodx with nodes involved.

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Jun 17, 2018 09:07PM Meow13 wrote:

bump again

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Jun 18, 2018 03:19PM Meow13 wrote:

Anyone?

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Jun 18, 2018 04:00PM Siciliana wrote:

I did not do chemo with an oncodx score of 20 and one positive node out of three. The Oncodx report said I had the same chance of recurrence (12%) whether I had chemo or not. So I chose not to put my body through that. I hope I made the right decision.

Dx 12/19/2016, ILC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Jun 18, 2018 04:28PM Meow13 wrote:

Dodgerick is in your same situation. Doctor says no chemo from oncodx but worries since she has a positive node.

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Jun 18, 2018 04:56PM ShetlandPony wrote:

Dodgerick, two questions:

Did your onc have the version of Oncotype DX that is meant for 1-3 positive nodes done, or the version for node negative?

Are you pre- or post-menopausal? (Forgive me if you are the man in the photo; I can’t tell which is you.) If pre-Meno, then the latest TailorX study results could be brought into the discussion.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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Jun 18, 2018 06:38PM Dodgerick wrote:

Meow13 - Thank you, thank your, thank you for helping me navigate here on breast cancer.org! I was starting to think maybe I was the first one to ever NOT have chemo! As far as reconstruction, I still have expanders in place and I still have almost no feeling in my "foobs"! Starting to wonder if they're always going to be numb!

Siciliana -I was so happy to hear from a breast cancer survivor who opted not to do chemo! The more I searched for another survivor, the more desparate I became and the more I worried! I started Tamoxifen June 1 (the day after I completed radiation) so I've been on it 18 days as of today. No noticeable side effects I've noticed yet.

ShetlandPony - I had the test for 0-3 nodes, and I'm postmenopausal (I'm the one on the left in the photo).

I hate the fact that I will probably be looking over my shoulder for recurrence for the rest of my life! But I guess we just get used to this being the "new normal" and keep up the fight!

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Jun 19, 2018 12:52AM Siciliana wrote:

Dodgerick, I haven't really had any side effects on Tamoxifen and I've been on it over a year now. I am also post menopausal, but because of mild osteoporosis/osteopenia, my oncologist recommended Tamoxifen, at least for now. I worry about that node, but as more time goes by, I worry less. I too was greatly relieved that I didn't have to do chemo. I had terrible anxiety about it. This may not be rational, but I had the feeling that if I had to do chemo, it would be the beginning of a downward trend as far as my health. I'm a believer in trusting my gut. I also believe in getting out of the house and walking/hiking several times a week, at least. It does wonders for my mood in addition to reducing recurrence risk, as I have been told.

Wishing you great health!


Dx 12/19/2016, ILC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Jun 19, 2018 12:13PM Dodgerick wrote:

Siciliana, thanks for the encouraging words! You have no idea how happy I am to hear from someone else who had a positive node and did not do chemotherapy. I am a walker too, I walk at least 5 miles every morning Mon -Sat. Walking not only reduces the recurrantce risk, it helps relieve/reduce my stress level....and I would like to think that it’s helping keep my bones strong too! My oncologist has me on Tamoxifen for the same reason, mild osteopenia. Wishing you great health too!
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Jun 19, 2018 03:27PM - edited Jun 19, 2018 03:39PM by Gracejoy

Dodgerick, I have one positive node,my Oncotype score was 16 and I didnot do chemo either. I have one of the best MO. He is very knowledgeable in his field, always up to date with latest research in his field. After my Mastectomy, he told me there is very little chemo benefits for ILC patients which is only 1-2 % and yet will experince all the side effects such as neuropathy.When I was still emotional about my Cancer diognosis I told him I still want to take it. He told me if you want then I will arrange for it. But when I saw how deeply he was saddened for me as he was going to give chemo to a ILC patient then I realized he was thinking his best for his patient. I changed my mind and I decided not get chemo. Thank God 4 years with NED. I am very happy with my decision not make my body go through something so toxic when not needed instead allow my immune system do the work. Blessings.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 19, 2018 04:00PM Dodgerick wrote:

Gracejoy, thank you for your success story! Four years and no problems, wonderful! Congratulations! This is such encouraging news! Yes, I too am blessed with an oncologist who is very knowledgable, kind, compassionate, and he stays up to date with new research. My Oncotype DX showed just a 1% increased benefit with chemo too....but there areas many risks from chemo associated with that 1% benefit. I've changed my diet drastically and watch what I eat. I walk every morning (at least 5 miles a day 6 days a week) I've added lots of veggies and cut as much sugar and stuff that turns to sugar (bread, pasta, rice, potatoes...) out of my diet. I'm really trying to do the right things. I'm so grateful and relieved to hear from other ILC survivors with lymph node involvement who opted out of chemo. I do have one silly question...what is NED? (I'm really new to breast cancer and I don't know a lot of the terms used). Thank you for connecting with me and helping me feel more confident about the choice I made, it was making me sick with worry. Blessings!

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Jun 19, 2018 04:21PM Gracejoy wrote:

NED means No Evidence of Disease meaning no recurrance or metastasis of breast cancer.

I also do lots of exercise like walking and yoga and eat healthy. I eat mostly vegetables and fruits.Reduced saturated fats and alcohol. Best

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/24/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Jun 20, 2018 12:31PM Dodgerick wrote:

Thanks Gracejoy

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Jun 20, 2018 08:47PM Dodgerick wrote:

BRACA test came back normal! Yay! Happy to share that news with my 3 sisters and my daughter!

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Jun 20, 2018 11:04PM Meow13 wrote:

Good news.

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Jun 22, 2018 03:47PM Dodgerick wrote:

Thanks! It’s about time I get some good news!

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Jul 27, 2018 10:14PM - edited Jul 27, 2018 10:16PM by MMSS

I haven't been on here for ages but just came back to browse and found your post. I had stage 3 ILC with a positive sentinal node. I had an agreement with my surgeon to do only that node. My oncotype was 6 and I had a bilateral mastectomy and radiation . Also found LCIS in the "good breast". I did 4 1/2 years of Aromasin and then had to go off because it was messing with my blood pressure. My diagnosis was 6 years ago and I am still here with no evidence of disease thank God! I was totally panicked at first and never expected to be alive 6 years later especially since I was 73 when I was diagnosed. With ILC hormonal therapy frequently works as well as chemo and it is a lot more user friendly. Good luck and start planning the rest of your life

Dx 8/24/2012, ILC, 6cm+, Stage IIIB, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/29/2012 Aromasin (exemestane) Surgery 1/21/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/3/2013 Breast, Lymph nodes
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Jul 27, 2018 10:44PM Dodgerick wrote:

MMSS, bless your heart for posting your response! I’m feeling almost desperate to find someone who has had ILC w/lymph node involvement that didn’t have chemo. Thank you for sharing your experience and the fact that you are a 6 year survivor! That’s AWESOME! God bless you! Prayers for a happy, healthy, long life filled with blessings! Hugs

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Jul 27, 2018 10:46PM Dodgerick wrote:

MMSS, by the way....I was born and raised in Ohio, but I married a Californian, so I kind of feel a connection. It almost feels like God sent this reassuring message to me through you! Thank you!

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Jul 28, 2018 05:12PM MMSS wrote:

I have a friend who is between 15 and 20 years out and she had a huge ILC in all 4 quadrants of her breast. She also had a local recurrence some years back. Never had chemo just mastectomy and radiation. With the recurrence she did arimidex for 5 years but is off of that also now. 6 years is not that surprising with ILC. My friend also had 15 of 20 lymph nodes that were positive. Every year when she sees her oncologist for her annual visit he looks at her and shakes his head and says,"Whatever it is that you are doing -keep doing it.

Dx 8/24/2012, ILC, 6cm+, Stage IIIB, Grade 1, 1/1 nodes, ER+/PR+, HER2- Hormonal Therapy 8/29/2012 Aromasin (exemestane) Surgery 1/21/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/3/2013 Breast, Lymph nodes
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Jul 28, 2018 08:08PM Dodgerick wrote:

AMAZING, and very uplifting! Thank you for sharing this wonderful news!

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Jul 29, 2018 11:48PM jojo9999 wrote:

I was diagnosed with ILC and one positive node (but clinically node-negative because it didn't show up on US or MRI, but did show up in pathology). I had multifocal ILC, but super low oncodx scores: 0 and 4. Had BMX and radiation, tamox, now on break and will start femara soon. From my reading of the research, it is old school to say "if positive nodes, then chemo for sure", although that was the case maybe 5+ years ago. Good luck.

Dx 8/2014, ILC, Right, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/8/2014 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 11/11/2014 Hormonal Therapy 12/22/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 30, 2018 08:51PM edwards750 wrote:

It is old school that positive nodes means automatic chemo. My MO said they have been overtreating women for years and subjecting them to unnecessary treatments so many oncologists order the Oncotype test to help determine treatment. I’m a prime example of that. I had a micromet in my SN which showed up on the Path report after surgery. I had the Oncotype test and my score came back at 11 which allowed me to dodge chemo.

Diane

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Jul 31, 2018 11:23AM Dodgerick wrote:

Thank you for sharing your stories with me jojo9999 and edwards750, I hope there are other oncologists thinking twice before sending their ILC patients through chemo. Hugs and best wishes to all the cancer fighters and survivors!

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Aug 22, 2018 11:53AM bootsie7 wrote:

Hello....Happy I found this topic this morning.

I have commented on other topics but I am in the middle of making a decision on Chemo and I find this site info posted here interesting. I have never heard that ILC doesn't respond to Chemo. I was suppose to have Oncotype test but surgeon and oncologist said I am beyond needing Oncotype test. I had 2 sentinel nodes and 15 axilliary nodes positive but encapsulated. Oncotype test not necessary because of the cancer being in so much of my removed left breast and the lymph node involvement. I also need a bit more surgery because I had a positive margin. I am post menopause. I am seeing another Oncologist Monday AM for second opinion and this gives me more info and added questions to get answers to.

I really want to avoid Chemo but I do not want to be foolish if it gives me a chance. It id hard for me to wrap myself around toxic chemicals that will cause me harm while Trying to keep cancer at bay. How can my immune system help me if I destroy it.

Thank you for allowing me to post.


LC Dx 5/24/2018, ILC, Left, 6cm+, Stage IIIA, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 9/20/2018 AC
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Aug 26, 2018 08:55PM jojo9999 wrote:

Bootsie,

Sorry to hear about the + nodes. Make sure to ask lots of questions concerning the efficacy of chemo on ILC when given before surgery or when given after surgery. It is not that it doesn't work for ILC but it isn't the slam dunk that chemo is for something like triple negative when given before surgery.

Dx 8/2014, ILC, Right, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/8/2014 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 11/11/2014 Hormonal Therapy 12/22/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 6, 2018 03:40AM PebblesV wrote:

This is a very late-in bump as I just found this thread, but it's so comforting! I am also one who had a couple positive lymph nodes but a low oncotype score so no chemo for me. I came out with an oncotype score indicating the risk of recurrence with just tamoxifen would be exactly the same as with tamoxifen + chemo, and the oncologist said at that point that he could not objectively recommend chemo due to the increased toxicity it would introduce, and since the stats indicated that chemo would not provide any benefit above just the hormone therapy, his recommendation was to go with the hormone therapy.

The stories of other survivors who had positive lymph nodes, did not do chemo, and are THRIVING are great for me to see as well! I hope to be a success story years from now as well! I really believe there is a lot we can do in diet, lifestyle, exercise and overall nutrition to help our odds. Some people skip all treatments and still thrive and survive, so the stories are there.

This thread was helpful / interesting to me as well because it showed others with positive nodes where chemo was not recommended, it seems about half and half and whether chemo was recommended or not had to do with the oncotype score: https://community.breastcancer.org/forum/145/topics/823546?page=2#idx_57

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 6, 2018 10:41AM Dani444 wrote:

My diagnosis was ILC and I had 2 positive nodes, one with extranodal extension. My MO ordered the mammaprint and it came back as low risk. So no Chemo, I am getting ready to start Rads today for the nodes. Tumor board decided radiation rather than full dissection.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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