I was diagnosed with DCIS in 01-2002, had two lumpectomies, 30 fractions of radiation. All mammograms clear ever since…until 10-2024 when the nipple of that breast inverted. In 01-2025 ILC was diagnosed which was surprised me! At almost 79, the surgeon advised a mastectomy AND RECONSTRUCTION. I certainly don’t need another boob!
I’m refusing all further treatments. The surgeon said anastrozole is contraindicated b/c I was diagnosed with osteoporosis decades ago; but so is tamoxifen b/c my mother had uterine cancer and I take anti-depressants. Oh yes, and my husband of 57 years has filed for divorce, my adult kids side with him, I’m being kept from my 9 grandkids…even those in their 20s.
But life is still better for me than it is for millions of people living in other war ravaged countries around the world. And breast cancer has to find somebody so why not me??
@marceille08 Yay!
I am only 5 1/2 years out, but my grandma also had BC in her 40s (she was born in 1913), and she lived a long healthy life and passed away at 96.
@llthomson That is a tricky question and hope survivors will speak up, I went on Chat GPT. PLease note question and answers. And if I'm breaking a rule, I apologize. This is not an easy question. My experience with CHat on this is that they scans tons of medical journals and studies to come up with these answers. Hope this helps. I My question:
Does Lobular breast cancer have a high chance of recurring and spreading?
ChatGPT said:
Invasive lobular carcinoma (ILC) can recur and spread, but its pattern is a bit different from the more common invasive ductal carcinoma (IDC). Here’s the clearest, most up-to-date overview:
Is the chance of recurrence high?
Overall recurrence risk is similar to IDC when matched for stage and hormone-receptor status.
BUT ILC tends to have a higher risk of late recurrence (after 5–10 years).
This is partly because most ILC tumors are estrogen-receptor positive (ER+), which can recur later in life.
Does ILC spread more?
ILC does not necessarily spread more often, but it does tend to spread to different places than IDC.
Common metastatic sites for ILC include:
Gastrointestinal tract (stomach, colon)
Ovaries
Peritoneum
Bones
Other soft tissues
These areas are less common for IDC, which may make detection harder.
Key features of ILC recurrence risk
Slow-growing, which means it can come back later.
Often ER+/PR+, so endocrine therapy (like tamoxifen or aromatase inhibitors) reduces recurrence risk significantly.
Margins can be harder to visualize on imaging, which can lead to slightly higher local recurrence if disease isn’t fully removed.
What reduces recurrence risk?
Completing recommended surgery, radiation, and systemic therapy (endocrine therapy, +/- chemo depending on the tumor).
Staying with endocrine therapy for 5–10 years can significantly cut recurrence risk, especially for lobular cancers.
I'm sorry to hear about your recurrence. I would guess that this is the biggest fear we have - will it come back? When? Where? I see all the percentages of 5 year survival, 10 year survival ... I see that and think it doesn't make me feel comfortable knowing that sometimes that means recurrence, treatment and survival. Has anyone seen any information on clinical research/trials of medications/treatments that seek out dormant/sleeper cancer cells and destroy them? I would love to hear any info about this.
@reeno there are multiple research teams looking at all kinds of ways to to prevent recurrence. I am not sure they are all funded but I had an opportunity to be in the room with many researchers and listen to them speak.
I feel very blessed to have been at this meeting as a guest and hear all of them talk quite passionately about their chosen paths in breast cancer research.
The hard reality is many will not be funded or underfunded, and many will not pan out originally, but these are dedicated people and this is how research moves forward.
We are all terrified of the recurrence unless it happens, then I believe most of us just do what is necessary and keep moving forward. Have you had a recurrence?
@llthomson That is a tricky question and hope survivors will speak up, I went on Chat GPT. PLease note question and answers. And if I'm breaking a rule, I apologize. This is not an easy question. My experience with CHat on this is that they scans tons of medical journals and studies to come up with these answers. Hope this helps. I My question:
Does Lobular breast cancer have a high chance of recurring and spreading?
ChatGPT said:
Invasive lobular carcinoma (ILC) can recur and spread, but its pattern is a bit different from the more common invasive ductal carcinoma (IDC). Here’s the clearest, most up-to-date overview:
Is the chance of recurrence high?
Overall recurrence risk is similar to IDC when matched for stage and hormone-receptor status.
BUT ILC tends to have a higher risk of late recurrence (after 5–10 years).
This is partly because most ILC tumors are estrogen-receptor positive (ER+), which can recur later in life.
Does ILC spread more?
ILC does not necessarily spread more often, but it does tend to spread to different places than IDC.
Common metastatic sites for ILC include:
Gastrointestinal tract (stomach, colon)
Ovaries
Peritoneum
Bones
Other soft tissues
These areas are less common for IDC, which may make detection harder.
Key features of ILC recurrence risk
Slow-growing, which means it can come back later.
Often ER+/PR+, so endocrine therapy (like tamoxifen or aromatase inhibitors) reduces recurrence risk significantly.
Margins can be harder to visualize on imaging, which can lead to slightly higher local recurrence if disease isn’t fully removed.
What reduces recurrence risk?
Completing recommended surgery, radiation, and systemic therapy (endocrine therapy, +/- chemo depending on the tumor).
Staying with endocrine therapy for 5–10 years can significantly cut recurrence risk, especially for lobular cancers.
Thank you @marshgirl24 very interesting post. Yes I had very early ILC about 25 years ago - estrogen positive. Treated with double mastectomy and 5 years of tamoxifen. Yes very slow moving - just last year, 33 years later had small lump under my arm that was stage 3/4 estrogen positive breast cancer in my lymph node - declined chemo since 72 (very healthy other than being old) so they treated me with Anastrozole to shrink the tumors which was successful. Had surgery they remove 27 nodes 11 where cancerous, then was treated with 16 rounds radiation for mop up. Oncologist wanted me on Verzenio to prevent spread - tried for month could not tolerate side effects. My oncologists are of the opinion my cancer will return - my ALC are under 1000 so my own immunity is low - I did take a Zometa infusion in AUG to help stop the spread into my bones & this will need repeating every 6 months. It is a "wait and see" attitude from oncology - I am pressing my doctors to address my immunity - convinced I would be a good fit for the new BIO SHIELD protocol but of course "traditional" oncology is resistant since FDA not approved for breast cancer yet. So for now I am still taking Anastrozole and every 6 month Zometa infusions - waiting for a return of this nasty cancer someplace else in my body - every headache, bone ache, tummy ache is suspect - hate living like this - feels hopeless unless I can jump start my own cancer fighting T cells. Fingers crossed the immunity protocol will get approved for all cancer patients.
I was diagnosed with DCIS in 01-2002, had two lumpectomies, 30 fractions of radiation. All mammograms clear ever since…until 10-2024 when the nipple of that breast inverted. In 01-2025 ILC was diagnosed which was surprised me! At almost 79, the surgeon advised a mastectomy AND RECONSTRUCTION. I certainly don’t need another boob!
I’m refusing all further treatments. The surgeon said anastrozole is contraindicated b/c I was diagnosed with osteoporosis decades ago; but so is tamoxifen b/c my mother had uterine cancer and I take anti-depressants. Oh yes, and my husband of 57 years has filed for divorce, my adult kids side with him, I’m being kept from my 9 grandkids…even those in their 20s.
But life is still better for me than it is for millions of people living in other war ravaged countries around the world. And breast cancer has to find somebody so why not me??
@mimi09 oh, my, I am so sorry you have had so many challenges. Perhaps your grandkids in their 20’s can
decide for themselves re seeing you. Amazing that you
have such a positive attitude in spite of all this. Blessings to you.
Thank you @marshgirl24 very interesting post. Yes I had very early ILC about 25 years ago - estrogen positive. Treated with double mastectomy and 5 years of tamoxifen. Yes very slow moving - just last year, 33 years later had small lump under my arm that was stage 3/4 estrogen positive breast cancer in my lymph node - declined chemo since 72 (very healthy other than being old) so they treated me with Anastrozole to shrink the tumors which was successful. Had surgery they remove 27 nodes 11 where cancerous, then was treated with 16 rounds radiation for mop up. Oncologist wanted me on Verzenio to prevent spread - tried for month could not tolerate side effects. My oncologists are of the opinion my cancer will return - my ALC are under 1000 so my own immunity is low - I did take a Zometa infusion in AUG to help stop the spread into my bones & this will need repeating every 6 months. It is a "wait and see" attitude from oncology - I am pressing my doctors to address my immunity - convinced I would be a good fit for the new BIO SHIELD protocol but of course "traditional" oncology is resistant since FDA not approved for breast cancer yet. So for now I am still taking Anastrozole and every 6 month Zometa infusions - waiting for a return of this nasty cancer someplace else in my body - every headache, bone ache, tummy ache is suspect - hate living like this - feels hopeless unless I can jump start my own cancer fighting T cells. Fingers crossed the immunity protocol will get approved for all cancer patients.
@aubreybill thank you for sharing this & sorry for what you're going through. I am recently diagnosed stage 1 ILC. Also 72. Lumpectomy & undergoing 5 days of radiation. Bear with me if this is a ridiculous question, but is there any chance your more recent cancer is unrelated to the first? Or is it definitely a recurrance? I'm still learning all the ends & outs. Fingers crossed that you stay cancer-free from now on! Hang in there & best wishes to you!
Both my oncologists and surgeon said related to my first cancer - the surgeon said even with full double mastectomy impossible to get all the cancer cells removed. I do wonder what jump started the dormant breast cancer again - pretty sure old age and maybe COVID reduced my immunity allowing that old cancer cell an opportunity to metastasize into my nodes. Surgery/radiation techniques are much better than 25 years ago. I do think if cancer patients can "protect" and/or "enhance" immunity - let our own natural T CELLS fight the cancer there is a better chance you will not suffer a reoccurrence. Need to be careful w/chemo/radiation that kills cancer cells also destroys natural immunity/T Cells that also kill cancer. Your oncologist needs to watch their patient's ALC levels - only 4.6% of patients with lymphocyte counts under 1000 were alive 4 years after surgery compared to 23% with lymphocyte counts above 1000. I am following closely the "BIOSHIELD" approval process with the FDA/needs to be approved for all cancers - optimistic reports about this life saving drug - giving cancer patients the opportunity to prevent reoccurance. Wishing you good recovery and long life!
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I was diagnosed with DCIS in 01-2002, had two lumpectomies, 30 fractions of radiation. All mammograms clear ever since…until 10-2024 when the nipple of that breast inverted. In 01-2025 ILC was diagnosed which was surprised me! At almost 79, the surgeon advised a mastectomy AND RECONSTRUCTION. I certainly don’t need another boob!
I’m refusing all further treatments. The surgeon said anastrozole is contraindicated b/c I was diagnosed with osteoporosis decades ago; but so is tamoxifen b/c my mother had uterine cancer and I take anti-depressants. Oh yes, and my husband of 57 years has filed for divorce, my adult kids side with him, I’m being kept from my 9 grandkids…even those in their 20s.
But life is still better for me than it is for millions of people living in other war ravaged countries around the world. And breast cancer has to find somebody so why not me??
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Hug
9 Reactions@seathink Yes there are stories of great hope out there. Keep fighting, laughing and hoping. Bless all you fighting women and our caring families.
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6 ReactionsI am interested in hearing from long term survivors of ILC. I understand that ILC has a high change of spreading and recurring...
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Hug
2 Reactions@llthomson That is a tricky question and hope survivors will speak up, I went on Chat GPT. PLease note question and answers. And if I'm breaking a rule, I apologize. This is not an easy question. My experience with CHat on this is that they scans tons of medical journals and studies to come up with these answers. Hope this helps. I My question:
Does Lobular breast cancer have a high chance of recurring and spreading?
ChatGPT said:
Invasive lobular carcinoma (ILC) can recur and spread, but its pattern is a bit different from the more common invasive ductal carcinoma (IDC). Here’s the clearest, most up-to-date overview:
Is the chance of recurrence high?
Overall recurrence risk is similar to IDC when matched for stage and hormone-receptor status.
BUT ILC tends to have a higher risk of late recurrence (after 5–10 years).
This is partly because most ILC tumors are estrogen-receptor positive (ER+), which can recur later in life.
Does ILC spread more?
ILC does not necessarily spread more often, but it does tend to spread to different places than IDC.
Common metastatic sites for ILC include:
Gastrointestinal tract (stomach, colon)
Ovaries
Peritoneum
Bones
Other soft tissues
These areas are less common for IDC, which may make detection harder.
Key features of ILC recurrence risk
Slow-growing, which means it can come back later.
Often ER+/PR+, so endocrine therapy (like tamoxifen or aromatase inhibitors) reduces recurrence risk significantly.
Margins can be harder to visualize on imaging, which can lead to slightly higher local recurrence if disease isn’t fully removed.
What reduces recurrence risk?
Completing recommended surgery, radiation, and systemic therapy (endocrine therapy, +/- chemo depending on the tumor).
Staying with endocrine therapy for 5–10 years can significantly cut recurrence risk, especially for lobular cancers.
If you want, I can also explain:
Typical prognosis for ILC
How ILC behaves differently biologically
Signs/symptoms to monitor
Long-term follow-up recommendations
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Helpful -
Hug
5 Reactions@reeno there are multiple research teams looking at all kinds of ways to to prevent recurrence. I am not sure they are all funded but I had an opportunity to be in the room with many researchers and listen to them speak.
I feel very blessed to have been at this meeting as a guest and hear all of them talk quite passionately about their chosen paths in breast cancer research.
The hard reality is many will not be funded or underfunded, and many will not pan out originally, but these are dedicated people and this is how research moves forward.
We are all terrified of the recurrence unless it happens, then I believe most of us just do what is necessary and keep moving forward. Have you had a recurrence?
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with hormone receptor negative IDC 33 years ago. Mastectomy and 6 months chemo. No recurrence yet.
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11 ReactionsThank you @marshgirl24 very interesting post. Yes I had very early ILC about 25 years ago - estrogen positive. Treated with double mastectomy and 5 years of tamoxifen. Yes very slow moving - just last year, 33 years later had small lump under my arm that was stage 3/4 estrogen positive breast cancer in my lymph node - declined chemo since 72 (very healthy other than being old) so they treated me with Anastrozole to shrink the tumors which was successful. Had surgery they remove 27 nodes 11 where cancerous, then was treated with 16 rounds radiation for mop up. Oncologist wanted me on Verzenio to prevent spread - tried for month could not tolerate side effects. My oncologists are of the opinion my cancer will return - my ALC are under 1000 so my own immunity is low - I did take a Zometa infusion in AUG to help stop the spread into my bones & this will need repeating every 6 months. It is a "wait and see" attitude from oncology - I am pressing my doctors to address my immunity - convinced I would be a good fit for the new BIO SHIELD protocol but of course "traditional" oncology is resistant since FDA not approved for breast cancer yet. So for now I am still taking Anastrozole and every 6 month Zometa infusions - waiting for a return of this nasty cancer someplace else in my body - every headache, bone ache, tummy ache is suspect - hate living like this - feels hopeless unless I can jump start my own cancer fighting T cells. Fingers crossed the immunity protocol will get approved for all cancer patients.
-
Like -
Helpful -
Hug
11 Reactions@mimi09 oh, my, I am so sorry you have had so many challenges. Perhaps your grandkids in their 20’s can
decide for themselves re seeing you. Amazing that you
have such a positive attitude in spite of all this. Blessings to you.
-
Like -
Helpful -
Hug
4 Reactions@aubreybill thank you for sharing this & sorry for what you're going through. I am recently diagnosed stage 1 ILC. Also 72. Lumpectomy & undergoing 5 days of radiation. Bear with me if this is a ridiculous question, but is there any chance your more recent cancer is unrelated to the first? Or is it definitely a recurrance? I'm still learning all the ends & outs. Fingers crossed that you stay cancer-free from now on! Hang in there & best wishes to you!
-
Like -
Helpful -
Hug
2 ReactionsBoth my oncologists and surgeon said related to my first cancer - the surgeon said even with full double mastectomy impossible to get all the cancer cells removed. I do wonder what jump started the dormant breast cancer again - pretty sure old age and maybe COVID reduced my immunity allowing that old cancer cell an opportunity to metastasize into my nodes. Surgery/radiation techniques are much better than 25 years ago. I do think if cancer patients can "protect" and/or "enhance" immunity - let our own natural T CELLS fight the cancer there is a better chance you will not suffer a reoccurrence. Need to be careful w/chemo/radiation that kills cancer cells also destroys natural immunity/T Cells that also kill cancer. Your oncologist needs to watch their patient's ALC levels - only 4.6% of patients with lymphocyte counts under 1000 were alive 4 years after surgery compared to 23% with lymphocyte counts above 1000. I am following closely the "BIOSHIELD" approval process with the FDA/needs to be approved for all cancers - optimistic reports about this life saving drug - giving cancer patients the opportunity to prevent reoccurance. Wishing you good recovery and long life!
-
Like -
Helpful -
Hug
3 Reactions