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Topic: chemotherapy with ILC

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

Posted on: May 22, 2019 06:20AM

everetta wrote:

I have had many different opinions from different doctors on the benefit of chemo depending on onctotype scores that I wondered what you think your doctors would have recommended, knowing how they evaluate things. I am 68, 1cm ILC, node negative, grade 2, mitotic rate 1, oncotype of 29. Any advice. I have been told benefit anywhere from 1-4% depending on who I talk with. Some say less then 1% benefit.

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May 22, 2019 10:20PM - edited May 22, 2019 10:21PM by Meow13

everetta, you probably have already seen my case I had 1cm Ilc and one idc separate occurrences each 1cm.

Same as you grade 2, mitotic score of 1, oncodx of 34. I chose no chemo I am on year 8 no cancer. I did 4 years on AI drugs.

Cancer math tools says less than 1% benefit from chemo and AI treatments. I think surgery probably got everything.

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May 23, 2019 05:34PM jessie123 wrote:

That is such a horrible decision to have to make. My oncotype score indicates that I will only benefit 2 to 3 percent with the Al's so I'm also trying to make the decision whether to even bother with them. Maybe we can call the onco people ourselves to get more information. I don't think the doctors know that much. I'll try to find the number and give it to you if I'm successful.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 23, 2019 06:00PM everetta wrote:

HI Jessie,

Did your doctor think that the onctoype score would tell you if the Ai's were beneficial. I hadn't heard that before, but that being ER and PR positive is how you would know if it was beneficial. What was your oncotype score? I think oncotype is to show the risk of recurrence and the benefit of chemo not Ai;s. I have had such an easy time on my Ai's and my doctor felt it cut my risk in half so that was an easy decision for me. And as long as you are on it, it protects (although not 100%) a chance of recurrence. If I had difficulty tolerating the Ais I might have felt different but since I have adjusted well, I will take any reduction it will give. Chemo is a more difficult decision since there is more toxicity as I see it.

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May 23, 2019 06:07PM - edited May 23, 2019 06:07PM by Meow13

everetta, I think Tamoxifen is considered just as effective for er+ pr+ cases but AI drugs are almost 2x as effective for er+ pr- cases. I haven't seen data specifically on ilc tamoxifen vs AI, have you?

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May 23, 2019 06:13PM jessie123 wrote:

Everetta -- My recurrence score is 19 my distant recurrence risk at 9 years with the Al's or Tam alone is 6% and my absolute chemotherapy benefit is <1%. Since the Al's are supposed to reduce my distant reoccurrence rate by 30% then adding 2% to my score of 6% is an 8% chance of distant reoccurrence without taking the Al's. I already have osteoporosis in my hip - so if I take the Al's I'll for sure have to take the osteoporosis drugs for as long as I'm on the Al's. This is the Oncotype site -- they even have a phone number - https://www.oncotypeiq.com/en-US/about/about-oncotype-iq

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 25, 2019 04:28AM everetta wrote:

My recurrence score was much higher (29) so the question was chemo not Ais (also I don't have any osteoporosis so no problem getting ais). My doctor has also given me every 6 months infusions of zometa which is good for bone loss from the is but he is giving it because it reduces the chances of bone mets..but your risk there is much lower then mine. Your risk is so low, mine is higher. But you might ask about zometa if you take the Ais. I have personally had no bad reaction so far (2 months) to the Ais and just had the first infusion of zometa yesterday and have done fine (a little achy this morning, but nothing too bad, a common reaction for the first 24 hours). These decisions are so hard to weigh the benefits and risks. Good luck and glad you had such a good onctotype score. I don't know your age, the oncotype score is read differently in terms of recommendations depending on your age.

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May 25, 2019 04:43AM Stephy01 wrote:

I tried it once and felt really nice and was helpful for my bodypain.

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May 25, 2019 05:54AM - edited May 25, 2019 05:55AM by momand2kids

This Post was deleted by momand2kids.
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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May 25, 2019 07:06PM jessie123 wrote:

Everetta --- I'm only a year older than you and our tumors are usually not as aggressive. Your diagnosis is milder than mine. Did you get the K-67 (or whatever number it is - forgot) score that tells you how aggressive your tumor is? I've read chemo works better on aggressive tumors. I wonder if it would be a good idea to have the tests run again - maybe they messed up on yours. It's always possible. I really would want to call and talk to them about the result -- maybe they can relook at your slide. What did your oncotype distant recurrence risk at 9 years with the Al's show? Was it also high? Thanks for telling me about zometa - I'll look into it.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 25, 2019 10:32PM everetta wrote:

My original oncotype ws 31 and redone and was 27. I am Er positive but Pr negative which is a reason for the score to be higher. Usually Lobulars are low or intermediate oncotype. The Pr- makes it higher risk but my mitotic rate (my person does not do K167 because they don't feel they are accurate but they do look at mitotic rate and mine was 1 so slow growing.

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