1. < Breast Cancer

Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

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

kiez53 | @kiez53 | Mar 9, 2023
In reply to @timely "To kiez53 @kiez53 I have ILC with pleomorphic in situ. I had lumpectomy and no chemotherapy..." + (show)
@timely

To kiez53 @kiez53

I have ILC with pleomorphic in situ.
I had lumpectomy and no chemotherapy was used as the pleomorphic was in situ and my Ki -67 was in low range of 7-10. Was + only for ER and PR.

I had read prior someplace that chemo does nothing for this. He was going to do chemo and then called back and said no.

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I had the same experience with the surgeon saying chemo first to shrink a 3.1 cm tumor. The next week the oncologist said chemo tends not to work. (50%) at most, so the plan went to Letrosole and Ibrance, then a CT scan and if that is clear, lumpectomy. We haven't gone beyond that step. The Ibrance is because the Ki-67 is so high...

Thanks so much for responding. Did you have radiation after the lumpectomy?

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1 reply
timely | @timely | Mar 9, 2023
In reply to @kiez53 "I had the same experience with the surgeon saying chemo first to shrink a 3.1 cm..." + (show)
@kiez53

I had the same experience with the surgeon saying chemo first to shrink a 3.1 cm tumor. The next week the oncologist said chemo tends not to work. (50%) at most, so the plan went to Letrosole and Ibrance, then a CT scan and if that is clear, lumpectomy. We haven't gone beyond that step. The Ibrance is because the Ki-67 is so high...

Thanks so much for responding. Did you have radiation after the lumpectomy?

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kiez53 @kiez53

I had 3 weeks of left whole breast breath holding method and 6 days of tumor only boost.

Done now and waiting 2 weeks to start Letrozole.

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timely | @timely | Mar 9, 2023
In reply to @lhwoz "Thank you so much for sharing. All sounds very similar except for the difference in Oncoscore..." + (show)
@lhwoz

Thank you so much for sharing. All sounds very similar except for the difference in Oncoscore which I am thinking might be because I was "less HR+" than you. Still HR+, just not as strongly? And this is my interpretation, my Med Onc has yet to interpret that aspect for me. I could be very wrong about it all. I have also listened to podcasts and read similar info re: Oncoscore based on treatment for Ductal. I believe this is the case for many aspects of lobular as research catches up and includes more lobular vs ductal. Sigh...

Good to hear side effects not so bad, at least for now? My bone density was very solid/good so I can at least (perhaps)remove that worry for now.

Are you at all suffering from hot flashes /esp at night? I am still searching for safe alternative. My MD said Black Cohosh, but then I read on the Komen Breast Cancer website maybe not safe for BC? Also some newer products with Bee Pollen type ingredients. The nights are so rough for me, have been resorting to advil PM and that destroys me when trying to wake up.

Again, thank you for you response. This site has given me much for my inside thoughts and worries that while I share with hub and friends, no one knows unless they know 🙁

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Ihwoz @!Ihwoz

Try melatonin instead.

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timely | @timely | Mar 10, 2023
In reply to @semurrey "Hi gals - My lumpectomy was 11/30/22, (2cm, ER+, PR+, Her2-), I'm 57 yrs, finished 19..." + (show)
@semurrey

Hi gals -
My lumpectomy was 11/30/22, (2cm, ER+, PR+, Her2-), I'm 57 yrs, finished 19 radiation treatments end of January 2023 and started Letrozole Feb 8 so I've been on it a month and hanging in with some joint stiffness so far (although I know side effects more commonly present after 6 wks).

My oncotype was 14 so felt fortunate I could skip chemo but I have read that oncotype better suited for IDC as lobular not as common but my onco at Dana Farber used it to say I could skip chemo. I just checked the single gene scores which I think you are referring to and my are 10.4 ER+, 7.2 PR+, 9.0 Her2 -. To be honest I never really looked at these numbers and not sure their meaning - so I'd recommend talking to your doctor as I've found research on the internet very confusing for lobular in regards to oncotype testing.

I do have osteopenia and my onco said we would do another bone density in 2 yrs - I only take 2000mg vitamin D (live in New England), and try to get calcium through diet as have a hard time with calcium supplements . I've heard Glucosamine can be helpful but figured I'd hold off until for now. I have a follow up after 3 months on the Letrozole but no scans until a year which does make me a little nervous. I'll keep you posted on any side effects of the Letrozole but other than joint stiffness upon waking I'm hanging in - hope this helps!xoxo

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Hi:

I am switching to another site which will do 3D mammograms and ultrasound twice a year as opposed to the other company site which is mammograms only once a year.
Then there is the issue that MRI’s show lobular cancer better. Would most likely have to request MRI from Oncologist. He said that most women do not want this. (MRI.)

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1 reply
dolphina3 | @dolphina3 | Mar 11, 2023
In reply to @timely "Hi: I am switching to another site which will do 3D mammograms and ultrasound twice a..." + (show)
@timely

Hi:

I am switching to another site which will do 3D mammograms and ultrasound twice a year as opposed to the other company site which is mammograms only once a year.
Then there is the issue that MRI’s show lobular cancer better. Would most likely have to request MRI from Oncologist. He said that most women do not want this. (MRI.)

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Hope you are doing well. I get an MRI every other year and a diagnostic mammogram, we don't have 3D yet. I asked my surgeon because of my dense breasts . Harder to see with dense breasts. I have alot of benign lumps in other breast and never have problem with having the MRI and haven't had to have extra tests because of. Good luck with everything.

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1 reply
Sue Ellen Murrey | @semurrey | Mar 24, 2023
In reply to @dolphina3 "Hope you are doing well. I get an MRI every other year and a diagnostic mammogram,..." + (show)
@dolphina3

Hope you are doing well. I get an MRI every other year and a diagnostic mammogram, we don't have 3D yet. I asked my surgeon because of my dense breasts . Harder to see with dense breasts. I have alot of benign lumps in other breast and never have problem with having the MRI and haven't had to have extra tests because of. Good luck with everything.

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Hi- I've been on Letrozole for 2 months and biggest complaint is fatigue and brain fog but who knows if that comes with the territory (57yrs) - I was hoping to get some feedback on treatment follow up for Lobular as I just read on the ASCO site that imaging and surveillance post treatment is still so varied and that 6 months is good time to have mammo or MRI particularly for Lobular. I don't see my onco for an entire year from diagnosis for a diagnostic mammo but meet with her NP 4 months after being on Letrozole. I haven't had any blood work through all of this and starting to think I should check in with my onco at Dana Farber. Any thoughts?
Maybe Letrozole causing this anxiety - I'm trying not to focus on it but maybe just need comfort that follow up is correct.

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dolphina3 | @dolphina3 | Mar 24, 2023

I had Triple Negative so can't speak about after cancer drugs because it's not hormone related. I would check with your oncogist to see what they have planned for you., I go every 6 months to see oncologist and get a diagnostic mammo one year and MRI the next year. I only get a blood test every 6 months because they give me a biophosphate infusion every 6 months. I am post menopausal, 69 yrs old , they say it may also help with reocurrence since my type of cancer has s high reocurrence rate. I hope you find the answers you need and good luck. I also have very dense breasts which is why MRI. Ask if a diagnostic mammo will show lobular cancer with your breasts.

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jessica2628 | @jessica2628 | Apr 11, 2023

Just diagnosed with LCIS and meeting with a breast cancer doctor tomorrow. I'm so unsure of what the next steps to take should be. I have a strong family history of breast cancer. I also have a 6 year old and a 9 month old baby. I'm only 36 years old and newly married also.

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timely | @timely | Apr 11, 2023

1) Ask for gene blood test.

2) What are options? Lumpectomy or mastectomy with implants or not. Need to ask questions about all the steps and options and research it yourself too. Also, what is the time frame for implants? If implants, can plastic surgeon do that after surgery or do you need to wait until after radiation.
***Lumpectomy needs radiation afterwards.
3) Contact breast cancer support groups now and work with them before your surgery. Find out and practice anti-stress methods. That is extremely important.

4) What anti-estrogen meds will you take? Any chemotherapy?

5) When can surgery be scheduled and how long at hospital?

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dyevooshka | @dyevooshka | Apr 12, 2023

Thanks to all of you for asking and answering questions. Together with our pooled knowledge and direct experience plus emotions we create a more detailed account of this whole cancer experience than any one (or 3!) doctors can do. 💕

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