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Anyone else diagnosed with IDC & ILC, at the same time?
Hello All,
In November of 2021 I had a "normal" mammogram (always noted heterogeneously dense breasts) On Oct 7th I had a very long-awaited breast reduction surgery where over 1lb was removed from each breast and I was feeling so happy with the results. On Oct 20 I received a call from my surgeon saying that 2 tumors were found in the routine pathology they do on the breast tissue after reduction- tumors considered grade 2 with mixed IDC and ILC features, and he was sad to inform me that I have Breast Cancer.
I feel like I have been blindsided by a mack truck. Things are moving both quickly and at a snail pace all at the same time. Issues are they know the tumors were both in the left breast but do not know where the tumors were on the breast since all of the left tissue removed was in one sample and same with the right side. So far I know I am Er+, PR+ and Her2 negative. Awaiting genetics testing results have not had lymph nodes have been tested yet.
I have had appointments with an Oncologist, Surgeon and Breast Care coordinator and was overwhelmed with the treatment plans ranging from radiation and hormone therapy through double mastectomy and Chemo based on more testing. They are waiting to do the lymph node surgery until it is determined if I need further breast surgery so they can do them both at the same time if possible. They gave me so much information but none of it was particularly specific to me because they do not know what my actual stage and full diagnosis is just yet.
I just turned 48 and there seems to be concern regarding my age (they kept calling me young and that was a nice change) and the chances of the cancer returning based on my age and that in addition to the tumors the tissue tested showed "extensive atypical lobular hyperplasia with foci of lobular carcinoma in situ".
I am currently thinking I want to proceed with the most aggressive treatment plan presented but I may change my mind 100 times by the time all of the tests and diagnostics are completed.
Short version of a long story- I am shocked, scared and in a bit of denial. I will feel better once I have a full diagnosis and plan of action. Thank you for reading my long-winded post and I look forward to finding and lending support in this forum as I continue on this journey.
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@kristiengelman0912 I add my welcome. I'd like to add @joiful and @kk57 to this discussion as they also had both ILC and IDC, and may have some experiences to share with you.
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1 ReactionUpdate: ER +; Pr+; Her2 negative. I also got my genetic testing results and I do have a significant mutation in the TMEM127 gene. I learned TMEM127 is supposed to work to prevent tumors from forming- mine is not doing that (I think this is what I understood) I am unsure how this is going to affect my breast cancer treatment but now I will need to have annual MRIs and blood/urine work done every 6 months to look for tumors. It seems I will be most likely to develop them in head/neck which is another whole scary idea to take in. I am more confused and concerned than ever before and am now anxiously awaiting what the next steps are for Breast Cancer. I am slowly becoming a scientist these past few weeks trying to understand all of this information....
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1 Reaction@kristiengelman0912 I had mixed ductal and lobular, ER+ PR+ HER2-, grade 2 or 3 with LVI, and had two mastectomies. My only treatment otherwise was hormonal meds. The Oncotype test guided my treatment, and was done without me requesting it.
If you are 48, you might straddle menopause, so to speak. So I guess (I don't know) the decision would be whether to suppress estrogen in ovaries plus meds to suppress it in adrenals (aromatase inhibitors), or tamoxifen pre-menopause and aromatase inhibitor after menopause. I have no idea how that works, or if that is what is done for a 48 year old, but the main idea is that tamoxifen is used pre-menopause and aromatase inhibitors after, and you are kind of in-between!
By the way the Oncotype test assumes tamoxifen in its results.
A little research is good but honestly, you need to know more before going in depth. Watch a lot of Netflix! breastcancer.org is a good resource too
Hi! I finished radiation end of January for ILC and DCIS after lumpectomy and am now on Letrozole. I saw NP at Dana Farber 3 months after radiation but no scans until diagnostic mammo a year after last mammo which did pick up my ILC - I have dense breasts and many cysts so I felt lucky radiologist picked up my tumor. My onco doesn't find scans prior to a year helpful but I'm very anxious about this and am going to reach out to my radiation onco to get her opinion. Good luck and please keep us posted. xoxo
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2 ReactionsI am a year out post treatment (lumpectomy, radiation and Letrozole for ILC (1.8cm) and smaller IDC all in right breast. To be honest radiologist didn’t think higher risk even though having both. I did have radiation boost as ILC margins weren’t all that great. I’m asking to have MRI-6 month alternating Mammo as I have level C (heterogeneous density-only level D is more dense) but honestly my onco wasn’t recommending MRI but at 58 yrs old I was adamant and I will have MRI in late April which is about 6 months after mammo (which was a year since diagnosis). I think the more types of cancer makes it bit more risky but I didn’t get the feeling that my team at Dana Farber Boston would agree??
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1 ReactionI just was diagnosed with both lobular and ductal .
One is estrogen the other triple negative . I’m seeking second opinion wondering what is onco test used for and you think I should ask for this too? Dr wants me on estrogen pill asap . But I await second opinion before I decide.
The Oncotype would only be for the estrogen positive cancer. It tells you whether chemo is needed, and how much your risk is reduced by taking meds that eliminate estrogen in your body. Maybe your doctor wants you to take the anti-estrogen pill before surgery to see if it shrinks the tumor-? Or have you had surgery?