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

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.

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!

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

Wishing you the very best for your journey. x

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

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

Thanks so much for your reply.
So sorry for the loss of your mother...what an awful time to add a lump to the mix.
Like you I didn't want to add to my daughter's already heavy load with her husband, and I thought, at 71, and living a life that hasn't afforded me much.. except, of course, I am grateful for my children and grandchildren, but I never had means to do much to make their lives easier so, I just ignored it for a few months, until my daughter saw I had dimpling and I had to admit I had a lump.
Well, you know what comes next...I had a lumpectomy this past Monday..but I don't have word on lymph nodes yet.
I am a wreck. I won't do Chemotherapy but I guess I would do radiation, if necessary.
Can you tell me what your journey has been like so far?
Thank you so much for replying./ Lois

We sure go on a roller coaster trip when we get our diagnosis! No matter what the size of our tumor or what our treatment, we are scared, feel blessed, feel cursed or somewhere inbetween. During my initial testing, I felt blessed. Small nodes were found in my lung, a renal aneurysm and spots on my liver. Never would have known any of that until the aneurysm broke! The nodes appear from old diseases, the aneurysm was causing no problem at the time. I chose to finish my breast cancer treatment for stage 2 ILC (HER 2+). That included Chemo, mastectomy, radiation and more chemo. I'm waiting for my exchange. I recently had the aneurism dealt with. The liver seems to be fine as well. This has been close to a two year journey. I'm very happy that it is coming to an end. It hasn't been easy, but it hasn't been awful either. I look on the bright side and try to stay in the moment. I wish you the best on your journey.

My ILC has the same size, 6mm. I will have Lumpectomy, not mastectomy, possibly radiation and aromatase inhibitors for about 7 years. I feel sort of lucky:) It diagnosed early, hopefully did not spread to lymph nodes, it is treatable with a small surgery. My stress level came down after I talked with a team of doctors and read about this stage of cancer. I am optimistic about the treatment outcome.

Your case is very much like mine. They will likely take out a couple of lymph nodes when the cancer is removed to make sure there is no cancer spread. You will have some exercises to do daily for a few weeks. Depending on how much radiation you have, there will be recovery from that. I consider myself fortunate not to have needed a full mastectomy or chemo. Just having the cancer diagnosis and going through treatment is a life changing experience but it helps to educate yourself so you are more comfortable making decisions for yourself. This blog is a great place to get additional information. We are all supporting each other!