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Topic: Hello lovely ladies newly diagnosed and need advice

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

Posted on: Nov 25, 2019 09:21AM

Tree88 wrote:

Hi all,

I have been creeping on this forum for a while and now I'm brave enough to ask for all your kind advice and inspiration.

I'm 30 and I have been recently diagnosed with lobular breast cancer. Devastation isn't the word as you all know. I had a slight flattening of my right nipple and my cancer could not be felt by my surgeon. On the ultrasound they thought it was a small lesion however on mastectomy it turned out to be multifocal over 7cm. I had clear margins on my mastectomy. I had 2 positive lymph nodes one with extra nodal extension. I had a full axillary dissection. My tumour is er+ 90%, pr+ 90% and her2 neg. It is grade 2 with a mitotic score of 1. I have been staged at 2b( my surgeon assured me that no focus was bigger than 2cm however the path report says contiguous over 7cm) so I think I'm prob a 3a. I'm so scared. I can't describe how low I'm feeling. I'm truly hopeless. I was hoping to get married soon and start a family now my whole world has caved in.

I have started AC chemo and I'm doing fine and then I will move on to taxol. I'm currently having ovarian suppression injections monthly. I will be having radiation and hormone therapy after chemo. I'm not sure what yet. I would love any advice anybody can offer.

I'm worried about what to diet to follow? What should I be eating? What supplements should I take? I've been eating loads of fruit and veg but have lost a lot of weight during chemo so I've been told I need to gain weight for chemo. I have PCOS also so I don't know if this has a part to play in all this.

I haven't had an Oncotype done (my oncologist said he doesn't think there's any point). I'm still thinking I want to know what it is. I would have to self fund would it be worth ?

Thank you T x

Dx 9/2019, ILC, Right, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2-
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Nov 25, 2019 10:26AM Ingerp wrote:

I don't know why you'd do an Oncotype test if you're already doing chemo. You will find lots of conflicting information regarding diet. I found this article useful (you can skip on down to Box 2):

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Nov 25, 2019 10:44AM wallycat wrote:

I tend to agree. THe point of taking the Oncotype is to see if you can skip chemo. Since you are already in treatment, knowing the score won't reveal anything new---unless they can do it soon enough and you can stop chemo, which is a discussion to have with your oncologist.

I am so sorry you are joining us, and so young to have to deal with this ugly stuff. I hope you sail through your treatments and can move to the part where your life is full and loving and joyful. Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Nov 25, 2019 09:02PM jessie123 wrote:

What I liked most about the oncotype test was that it predicted my risk of recurrence if I took the aromatase inhibitors. Since my risk was low it really lowered my stress level. I wonder if that test can be ordered independently with no chemo benefit score.

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 4/15/2019 Whole-breast: Breast
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Nov 26, 2019 04:03PM Racy wrote:

There are other calculators you or your doctor can use to predict the likelihood of recurrence. Cancer Math is one.

I'm sorry for all you have been through with this disease at such a young age. You seem to be handling it as well as could be expected.

This forum is always here for you. I've been here nine years.

Take care and reach out if you need any help.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Dec 12, 2019 12:29AM toomuch wrote:

Tree88 - It always makes me so sad when I see young women diagnosed. Connecting with other young women with BC may help with your feelings of hopelessness. There is always hope. Here is a link on for women in their 30's.

I tackled my diet immediately after being diagnosed because it helped me feel like I had some control. There are many books out there including Anti-Cancer, A New Way of Life and The Anti-Inflammation Diet and Recipe Book. I made some common sense dietary changes and exercise regularly now which I think probably has even more benefit.

Your still in the early part of treatment. I was surrounded by supportive family who I didn't want to burden with my fear so I met with a social worker just to talk while I was in treatment. These visits really helped me learn to manage my fears. Be kind to yourself!


"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Dec 13, 2019 08:35AM - edited Dec 13, 2019 08:36AM by claireinaz

I would also look at the Nurses Study that indicates that regular exercise--3-5 hours of moderate + exercise a week reduces recurrence rates. I take my AI daily and so far (after switching meds once because of side effects) so good. I also take an aspirin and a claritin, eat organic-pesticide free, and avoid meat and dairy (small amounts of dairy, no meat).,the%20odds%20of%20cancer%20recurrence.&targetText=A%20review%20of%20the%20effect,risk%20of%20breast%20cancer%20recurrence.

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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Dec 16, 2019 10:20AM OnTarget wrote:

I'm so sorry for your diagnosis!

I have PCOS too, which is interesting. I've always wondered if that contributed in any way.

I agree that the oncotype is probably a waste of money because as others said it is used to determine whether to do chemo or not.

I don't have any insights on what to eat/take, but my suggestion is to figure out what you can do to make yourself feel like you are doing your best, while still feeling like you are living a quality life. As hard as it is to do, I like to try to focus on the good things I have because if I do get metastatic cancer in 10 years, I don't want to look back and think that I wasted any of those years worrying or making myself miserable.

My plan has been to figure out what will make me feel safest, and then just focus on showing up for whatever it is I've signed up for.

Good luck! We're all cheering for you!

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 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 16, 2019 10:54AM AnnC2019 wrote:


What does the Claritin do for ILC?

Dx 6/19/2019, ILC, Right, 3cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 8/15/2019 Arimidex (anastrozole) Surgery 8/28/2019 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 11/4/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/22/2020 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement
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Dec 17, 2019 08:27AM claireinaz wrote:

Re claritin/loretadine: it's pretty academic, but here is the study. We had some discussion on the benefit of taking a claritin or some other rx-similar drug on the "Breaking News From Sources Other Than" board some time ago. Read the final paragraph.


"Second generation antihistamines after breast cancer diagnosis to improve prognosis both in patients with ER+ and ER- breast cancer.

Background: Subgroups of patients with breast cancer (BC) could be candidates for immunological interventions. In the present investigation the role of antihistamines on prognosis of breast cancer has been studied, especially comparing first and second generation H-1 receptor antagonists due to their possible different effects on cytokines.

Methods: The study includes all women with BC diagnosed in Sweden 2000 through 2008 (n = 54406). Dates of birth, BC diagnosis and TNM-stage were directly extracted from the cancer registry. Therapy with antihistamines was gathered from the Swedish Prescription Registry. Other registries utilised were the Cause of Death Registry, Population Registry, and the in patient or out patient registries. BC and overall survival was compared between users of antihistamines and non users. Analyses were adjusted for TNM-stage, receptor status and age at diagnosis. A late entry model was used for different types of antihistamines.

Results: The HR for BC specific survival for the combined group of antihistamine users (n = 9777) was 0.70 (0.66-0.75). All the effect was seen for use after BC diagnosis. Results remained after adjusting for out or in patient diagnoses of allergy. In late entry models women using desloratadine (n = 1895) had a HR of 0.69 (0.52-0.91). Loratadine users (n = 2132) HR of 0.74 (0.60-0.93). Cetirizine users (n = 3001) HR of 1.13 (0.96-1.33) and Klemastine users (n = 2278) had a HR of 0.98 (0.80-1.19). Ebastin users (n = 326) had a HR of 0.50 (0.22-1.12) and Fenofexadine users (n = 145) had a HR of 0.73 (0.30–1.76). The analyses was also stratified for ER-status, but the results did not differ noticeably. Results were similar when overall survival was analysed.

Conclusions: This population based registry study shows that women treated with second generation antihistamines have a better overall and BC specific survival compared with non users regardless of age, history of allergy, ER status and tumor stage. The results are strongest for desloratadine use and use after BC diagnosis. Second generation antihistamines could offer a nontoxic therapy for both receptor positive and negative BC. The mechanism behind this effect is presently unknown.

DOI: 10.1200/jco.2015.33.15_suppl.3062 Journal of Clinical Oncology 33, no. 15_suppl (May 20, 2015) 3062-3062.

Published online January 31, 2017."

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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