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

Thanks that is really helpful. Did you start on the inhibitors yet? Please let me know how you get on

I will have a surgery in 2 weeks, and in one month after that the inhibitors.

Wishing you the very best for your journey. x

Hi Lois -
I will say that initially I was also a mess - so many thoughts swirling and then the "why me" turning into "why not me". I am 55. I am working on the "be positive, stay strong" messaging but also think its very important to feel all the feels, so to speak, and have some downs, as then we come out having addressed our feelings and anxieties without passing right over them. I will say that the fears and sadness do sit right in my throat if I let my mind go there - so I keep up with supportive friends and share news but also love when conversation turns to other things!!!!!

I had a lumpectomy and 2 sentinel nodes removed 1/25. While one node contained a "rare isolated tumor cell"? I am still considered Node negative. The tumor was slightly larger that previous thought from U/S scans and was 2.1 cm. That put me into Stage 2 what I call "physical" diagnosis but they said technically I am a Stage 1 in terms of prognosis. Unfortunately the margins weren't clear 1st lumpectomy so they did a re-excision 2 weeks later (I am now 3.5 weeks from re-excision) and now margins clear. ** In my opinion ** they indicated re-excision rates too low when we discussed, told me 10% prior to lumpectomy, but I have read upward of 60% and I believe it is in the hight range due to the nature of Lobular. If doing it again Id ask my surgeon, who I really like, to "take a generous approach" although I am she would have done what she had planned/per protocol.

I have received my Oncoscore of 22, higher than I had hoped, and they recommend radiation only. I am seeking a 2nd opinion in parallel but am proceeding forward with radiation plan and will start in a few weeks. I am less nervous about the radiation than I am about the side affects of the anti-estrogen meds (with Aromatase Inhibitors or Tamoxifen) that I will be on as many here are also on.

Physically I feel great right now - the underarm excision was probably the hardest. For the lumpectomy she went very near and around the nipple area to sort of blend it in (eventually) as my tumor was located about 2 cm away from nipple. I am hiking, exercising gently but doing lower body and the other arm 🙂 for my mental strength.

I have some anxiety and am researching a bit more about my oncoscore. I am going to do a new post on my questions about this - the actual "score" of my ER/PR+ and what that means.

Be well, get outside (if you can), and allow yourself to indulge in other topics and activities and passions. Keep me posted

-laurie

Hello all -
QUESTIONS re: actual ER/PR "score" on Oncotype report:

I am ILC ER/PR+, HER2-. 55 yo. Have had lumpectomy and sentinel nodes removal and then re- excision. My tumor was 2.1 cm, and node had "rare isolated cell" bu MDs indicated technically Node Negative. My questions for all of you in the know today is the ER/PR+ "score" on your Oncotype report - and does anyone have any advice to address this:

I recently received my Oncotype score of 22. It was revised from 18% to 8% for the Distant Recurrence Risk at 9 Years. The interesting part is the "score" for the ER+/PR+. my score was 7.2 and 6.2 respectively, and based on a little research I have done this seems to be very close to the cutoffs of 6.5 & 5.5 that places me in the ER+/PR+ vs being labeled - in these categories? Does anyone have any thoughts or experience with this, or info from your Med Oncologist? Unfortunately I did not get to review report until after I met with her and so had not looked at it closely. I will follow up with there but thought I would put in a shout out to all of you!

So, got my pathology report and the lymph nodes were negative but won't have Oncotype number for awhile.
I am also worried about the side effects of the estrogen blocker.

Hi... I have just been diagnosed (final biopsy pathology recived 2.28.23) with "pleomorphic lobular breast cancer with neuroendocrine features." HR+ Her2 neg. When I saw the oncologist he just scratched his head... and told us there is just no clear treatment protocol since it (PLIC) is so rare. Chemo works only 50% of the time on this goofball variant.

"Trickiest of the tricky" for sure... I started Letrozole last week and Ibrance probably tomorrow to see if we can shrink this 3cm invader. If next week's CT scan is clear, I will have a lumpectomy soon after, then, who knows? Ki-67 was ~70%...so this currently has free rein to run rampant. Hoping the Ibrance will put the brakes on this.

I am sorry your Letrozole side effects were unbearable. I am hoping my Celebrex keeps the aches and pains tolerable.

I feel like a walking experiment, but am confident in my surgeon and oncologist despite the initial head scratching.

Thanks for listening and for this "lobster" terminology. 🦞 So much easier to refer to a pleomorphic lobster. I wonder what it's neuroendocrine features are? Long eyelashes? Freckles??

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.

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

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 🙁