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Topic: Tamoxifen for ILC in pre menopausal women - anyone decline this?

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

Posted on: Apr 4, 2019 08:07PM

notbornintheusa wrote:

First time posting!

It seems at this stage{ (bilateral mastectomy) ER+/PR+/HER2- Stage1b - oncotype dx 10 /age 48 pre menopausal } Tamoxifen is the only thing offered to me. I prefer not to take this due to risks. Would love to hear from anyone else who chose not to take it.

Thank you...

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Apr 8, 2019 08:42AM Lojo wrote:

Hi! I'm not in the category of people you're looking for - I did choose to take tamoxifen when it was offered to me at age 41 with oncotype dx 7, bilateral mastectomy and rads. I am approaching 5 yrs on tamoxifen and am still on it with minimal to no side effects (mild hot flashes when I began). I suspect I will remain on it for another 5 yrs or until menopause, whichever comes first. What are your primary concerns? Other than shutting down your ovaries or removing them and then taking an aromatase inhibitor, tamoxifen is the only medical option for pre-menopausal women. From what I understand from my oncologist and also my gynecologist, as long as you're still menstruating, the concern about uterine thickening/cancer is minimal - - it is primarily a risk in post-menopausal women who take tamoxifen.

dx at 41, ILC, stage 2a, 4cm, 0/1 nodes, ER+/PR+, HER2-, grade 1, BMX 11/2013, tamoxif 1/2014
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Apr 15, 2019 01:34PM beach2beach wrote:

I'm sure you will find many who chose not to take tamoxifen. I too am pre-meno and am 52. I've had very little side effects,,,mostly drying effects so I have to be careful to not take it too close to when i take allergy meds. I had a flash or two in the beginning but since then been good. Im now into my second year of taking it.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 3, 2019 10:48AM 1227River wrote:

hi notbornintheusa, this is my first post as well. I am 45 and premenopausal. ILC of 2.6 cm, node negative, dmx, no chemo or rads. Oncotype 15. I started tamoxifen on 3/1/19; went off for 3 weeks for reconstruction and now back on it. I too questioned if tamoxifen the most effective. I feel ILC treatment is grouped with IDC treatment by default. Considering second opinion since I was a told this is a 10 year plan for me.

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May 3, 2019 01:08PM Meow13 wrote:

You know ilc may respond a bit better to AI drugs. Tamoxifen studies have shown for er + pr+ cancers to be just as effective as AI drugs. Not sure about being pre menopausal, as far as AI choices, I would ask your oncologist what would be the most effective treatment route. Some people elect to be put into menopause.

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Jun 23, 2019 04:44PM OnTarget wrote:

Late to the game here, but I was offered the choice of Tamixifan or Zoladex + AI.

I chose Zoladex + AI as the MO ( and my reading) feel it is the most aggressive way to combat ILC.

I have so idea how the SEs will go for me since I just started the Zoladex.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/15/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/30/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 6/1/2021 Reconstruction (right): Tissue expander placement
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Jun 23, 2019 04:47PM Meow13 wrote:

From what I have read side effects seem to be the same. Dryness and joint pain is what I remember the most. I never took tamoxifen but I have a couple friends that did about the same side effects.

Also annoying trigger finger.

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Jun 25, 2019 06:38AM claireinaz wrote:

I was on it for a year before I went officially into chemopause--and then switched to an AI, which I remember gave me worse side effects than Tamox. Tamox was pretty much a non-event, but Arimidex--an AI-- (for me), caused mood swings (rage), trigger joints in my hands and bloating. I told my MO I was quitting, and she switched me to Aromasin, which, after 5 years, is very doable compared to Arimidex.

I'd at least give the Tamoxifen a shot at seeing how you metabolize and respond to it. It may be that you have an experience like mine, and are giving yourself added benefit of protection.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jun 25, 2019 09:12AM jojo9999 wrote:

Thought I should chime in to mention that Oncotype DX scores and the probabilities of recurrence that go along with the scores are *conditional* on taking a anti-hormonal drug for years after surgery.

There seems to be such wide and varying side-effects from tamox, but for most women they build over time, so it might be worth a try. I took it for 2.5+ years (premenopausal) and it spiked my estrogen levels and caused cysts. Still pre-meno, I had ovaries removed at 54 y.o. instead of suppression and now take letrozole and have had few side effects so far.

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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Jun 25, 2019 03:22PM kitkit wrote:

Hello all,

post-menopausal here. Just wondering, my doctor says that since my T6 met might be gone after gamma knife, and hopefully my axillary lymph nodes and hilar lymph nodes shrink after three rounds of Ibrance/Letrozole, I could try axillary node dissection, then CHEMO (not full bore), then radiation to entire breast region. I then could have a shot at being "oligo" or "cured."

Why would a lobular person have chemo? My reading is that it's ineffective for lobular. Has anyone here had it and it worked? I'm afraid of the side effects that could be lasting.

Thanks and best wishes,


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Jun 25, 2019 03:57PM Meow13 wrote:

I thought chemo was effective against fast growing cancer cells, the drug resistance can be a problem causing some to balloon out of control.

Definitely need better targeted drugs.

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