Newly diagnosed mixed IDC and ILC

Posted by kristiengelman0912 @kristiengelman0912, Nov 12, 2022

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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Sorry to hear of your devastating news. I too was blindsided when I received my diagnosis in Jan 22 of double foci BC two months after a “ normal” mammo ( I persisted with a symptom until an MRI was performed). I was devastated.

Hang in there. Take a deep breath and educate yourself about BC and treatments. Your path will become clear as more testing is done. It’s a steep learning curve and decisions will need to come fast at times.

Enlist the help of a trusted friend, if possible, to be another set of ears at appointments. As you gain information make a list… a long list… of questions. Self advocacy will come in handy.

A lot is going on in the research concerning BC. There are more options now. Once you have more definitive information a treatment plan ( or plans) will evolve.

I too was ER/PR+, HER2- I had a unilateral mastectomy and I am taking hormone (aka anti hormone) therapy for 5-10 years.

Caution: because you are ER + you will be offered anti hormone therapy … a daily pill of an Aromatase Inhibitor (AI) … there are 3 kinds all of which do pretty much the same thing … cut estradiol from converting to estrogen aka killing off estrogen production. If you are pre menopausal ( age wise you likely are) then ovarian suppression will also be needed.

I have learned that once you take AI you are no longer eligible to get an ONCOTYPE ( determines if chemo will be beneficial in your case) for any BC tissue that may have been left behind. They will be able to type the tissue already removed and you should request that testing … it takes a few weeks to get results.

Wishing you the best possible news going forward. Hang in there! Hugs.

REPLY

I think too much information too soon can be overwhelming. I recommend the Mayo Breast Cancer book for a good overview, if you need an overview. But even better, wait for more information on your cancer, especially the Oncotype Dx test.

I believe lobular DCIS is a precancer: that it is not yet invasive. (I also had mixed ductal and lobular but both were invasive).

If you are ER+ there is a good chance you will avoid chemo, depending on the Oncotype.

While you wait for info, I think distraction is the best strategy I also got a few Ativan from my doc!

Once you have details, and a treatment plan, you can move forward. Get as many opinions as you need to feel good about your plan.

REPLY
@windyshores

I think too much information too soon can be overwhelming. I recommend the Mayo Breast Cancer book for a good overview, if you need an overview. But even better, wait for more information on your cancer, especially the Oncotype Dx test.

I believe lobular DCIS is a precancer: that it is not yet invasive. (I also had mixed ductal and lobular but both were invasive).

If you are ER+ there is a good chance you will avoid chemo, depending on the Oncotype.

While you wait for info, I think distraction is the best strategy I also got a few Ativan from my doc!

Once you have details, and a treatment plan, you can move forward. Get as many opinions as you need to feel good about your plan.

Jump to this post

Thank you for the advice. I am going to ask about the oncotype test- I don’t have this in my notes or pathology report. As of now I know its invasive lobular and invasive ductal on the left breast and DCIS on the right. Hopefully will have more answers and a plan soon.

REPLY
@anjalima

Sorry to hear of your devastating news. I too was blindsided when I received my diagnosis in Jan 22 of double foci BC two months after a “ normal” mammo ( I persisted with a symptom until an MRI was performed). I was devastated.

Hang in there. Take a deep breath and educate yourself about BC and treatments. Your path will become clear as more testing is done. It’s a steep learning curve and decisions will need to come fast at times.

Enlist the help of a trusted friend, if possible, to be another set of ears at appointments. As you gain information make a list… a long list… of questions. Self advocacy will come in handy.

A lot is going on in the research concerning BC. There are more options now. Once you have more definitive information a treatment plan ( or plans) will evolve.

I too was ER/PR+, HER2- I had a unilateral mastectomy and I am taking hormone (aka anti hormone) therapy for 5-10 years.

Caution: because you are ER + you will be offered anti hormone therapy … a daily pill of an Aromatase Inhibitor (AI) … there are 3 kinds all of which do pretty much the same thing … cut estradiol from converting to estrogen aka killing off estrogen production. If you are pre menopausal ( age wise you likely are) then ovarian suppression will also be needed.

I have learned that once you take AI you are no longer eligible to get an ONCOTYPE ( determines if chemo will be beneficial in your case) for any BC tissue that may have been left behind. They will be able to type the tissue already removed and you should request that testing … it takes a few weeks to get results.

Wishing you the best possible news going forward. Hang in there! Hugs.

Jump to this post

Thank you for the oncotype suggestion- I don’t have this written anywhere so I will follow up. I he my Mirena IUD removed in Thursday and there was discussion about hormone therapy and possible ovary treatment of some type. Hoping for more news and plans this week or next.

REPLY
@kristiengelman0912

Thank you for the advice. I am going to ask about the oncotype test- I don’t have this in my notes or pathology report. As of now I know its invasive lobular and invasive ductal on the left breast and DCIS on the right. Hopefully will have more answers and a plan soon.

Jump to this post

Yes, pre menopausal women have different… and effective …anti hormone treatments which entail shutting down ovarian generated estrogen. In Post menopausal woman ( like me) the ovaries are no longer producing.

We are here for you 🌸

REPLY

Hi kristiengelman0912,

im so sorry you got this news! Its never easy to hear.
I felt the same as you, blindsided and confused and scared as hell. Bad news coupled with all the information on surgery, treatments and options. Was too much to even think about. I joined this forum and got some great information and advice from the wonderful people on here. I calmed down, got my head together and did my research. I felt so much better knowing what to expect. An oncotype test is helpful when it comes to chemo or no chemo, and chance of reoccurence. They take samples during surgery and send to a lab called exact sciences for analysis( it takes some time) .Wishing you all the best for your coming weeks. Take notes and ask lots of questions. Be strong! We got you!

I want to thank anjalima, you are a great source. Very insightful!

REPLY
@kristiengelman0912

Thank you for the oncotype suggestion- I don’t have this written anywhere so I will follow up. I he my Mirena IUD removed in Thursday and there was discussion about hormone therapy and possible ovary treatment of some type. Hoping for more news and plans this week or next.

Jump to this post

@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.

REPLY

Update: 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….

REPLY

@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

REPLY
Please sign in or register to post a reply.