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

Hi Nancy:

I am ILC with pleomorphic in situ. Discovered August 2022 and surgery Nov. 21, 2022.
I am just finishing up 21 treatments to the left breast.
14 whole breast and now 6 tumor boost site.

My question is:
What is the plan to keep check on you?
Are you doing mammograns once a year or more often and are you doing ultrasound with your mammograms?
Do ILC patients need MRI's with their mammograms?
What anti-estrogen meds are you taking?

Hello all -
I have ILC, diagnosed in Dec, had lumpectomy and sentinel node removal and then re-excision bc margins weren't clear. Likely starting radiation in a few weeks and then anti-estrogen meds after that. My nodes were technically deemed negative, however 1 node had what they called micrometers, or an isolated tumor cell, still deemed node-negative though. This concerns me, of course.

Although we don't meet again until Monday my Med Oncologist let me know that my OncoScore was 22. I am 55, and thus the chemo cutoff score is 26 I believe? I was expecting my score to be lower to make the Chemo decision a bit more defined/clear, but wit ha score of 22 I find myself a bit distraught over being somewhat close to the "can go either way" category?

Can anyone shed light on their scores and decisions? I am getting more info before I meet with her on Monday.

Thanks so much-
laurie

Hello there - fairly new here with Invasive Lobular. I am sorry to hear you story and can feel how much this is to digest and endure. I wish your family all of the best health and care coming your way!

I found my lump the night my mom passed away - after a long day of all that entails the passing of a parent and caring for her for this past decade and the last year in particular ups and downs. The evening she passed I was taking a shower and just letting all the grief/sadness/relief/exhaustion and so much else just exhale from me when I felt the lump. I could not believe it. I can 100% understand how you are feeling - we had some illnesses and passings in our friend group (I am 55) and I felt that
1) I didn't want to burden anyone with more baggage of a "friend with cancer"
2) I didn't want to have this be the topic of all my interactions for the foreseeable future, and
3) I could barely say the words as it opens the floodgates and also felt like an out of body experience - as in this cannot be me who is saying "I have cancer". It still feels that way to some degree.

They were all so supportive when my mom passed (flowers, cards and even meals to us!) and for that month (this past December ) but I kept my tests/biopsies just between my husband and that felt right for me/us. I needed time to understand more and that worked for me. It wasn't easy though. I have found that letting people know over time has helped, it gets easier to talk about, and most definitely my friends care, want to help and be there for me. I do waffle with emotions though and have some really good conversations with my husband and a few friends on the co-existance of "staying positive" but also feeling all the feels and not denying myself the emotions that come with this. If I skip over those I am not doing myself any good as I move forward.

I, too, wrangled with the idea of mastectomy vs. lumpectomy but all MDs and research indicated lumpectomy had same outcome. In addition, given same outcomes with the research they have, mastectomy is a long haul surgery and most wouldn't recommend unless needed or genetics warranted (my understanding) . I will say that I was told chance for re-excision after lumpectomy was perhaps 10%, but I did have to go back in 2 weeks later as my margins were not clear. I know have read re-excision rates can be upward of 60%. If doing it again I would ask surgeon to take a wider approach to lumpectomy to better chances for only 1 surgery. I am now 4 weeks post 1st lump/sentinel node removal and 2 weeks post re-excision, feeling like myself, hiking, walking and slowly getting back to some routine.

Take care - this site is a gem.
laurie
(Bay Area, CA)

What antidepressant were you taking and what are you taking now?
I'm told the nauseousness subsides after awhile..but, idk.
What estrogen blocker were you taking before Tamoxifin?
Hope you will feel better soon.

Lois, on the immunotherapy-hormone blocker:. I had hot flushes, and I often addressed the symptoms at nighttime by putting an ice pack on top of my head. Doubled up the blankets from my waist down so I wouldn't get chills and shivers. My neighbor told me about this and I thought, "can't hurt." It worked, at least most of the time. (our cat wondered what was going on.) My husband, an engineer, thinks a bit of trial and error is absolutely the right way to go, as long as you're not hurting yourself. Nurses and nurse practitioners are good resources, even when doctors don't know these techniques. Some very good practical advice has come from the nursing side. Be nice, shower them with chocolates!

Dear Lois, Your family's situation is a tough one. I am so sorry your daughter's husband is having to go through with this type of cancer--my husband's first cousin was also diagnosed with this. In my case, my brother, a year older than I, was diagnosed with Stage 4 prostate cancer. Our last family meal together, Thanksgiving, came right before my first bladder cancer surgery, and his death two months later came right before my first breast surgery. I didn't feel I could drop my news onto the family plate, as his wife and four adult children were so distraught. But I did tell my husband's side of the family and a few months later, my brother's family, and my first cousins. Everyone understood, and everyone wanted to help. So, don't keep this a secret much longer. Your daughter is probably stronger than you think, and if something were to happen to you and she hadn't known about your cancer, she would be really devastated. Being open will enable you to help others, in an odd way, and that will make you feel good about yourself. Life is strange that way.
Treatment: I have two kinds of cancer--bladder and breast. I was first treated by a urologist in San Francisco and then when things got tricky, a bladder cancer surgeon (female!) at the Univ of California-San Francisco. For my breast cancer, I was operated on by a breast cancer surgeon, also a female, in San Francisco at the California Pacific Medical Center. My oncologist-hematologist, also a female!, is with the California Pacific Med Center/Sutter. (Sutter is one of the largest private health care providers in Northern California). Keep in touch if you wish, Nancy

16 mos post lumpectomy w/negative sentinel nodes for stage 2 ductal and lobular cancer R breast. 21 radiation txs. AIs caused nausea(!!) + pain& bone loss of course. Switching to Tamoxifen but different antidepressant necessary has been bad news. Interested in lobular discussion & general breast cancer support. Thanks.

Thanks so much, Nancy!
The immunotherapy is the estrogen blocker. I will have to take it for 5 yrs also.
So..one reason this is so hard to share with my daughter, is, her 38 year old husband was diagnosed with a Glioblastoma brain tumor in September of 2021..3 weeks before what was going to be a beautiful wedding. He took a seizure during the night...and the nightmare began. They have a 5 yr old son.
He was operated 3 times, extensive radiation at Duke University Hospital and just finished a year of chemotherapy.
Praise to God he is doing great. MRIs every 2 months..so far, so good..and I am believing God that he has granted this great husband and father the miracle that I prayed and prayed for, he does have occasional seizures 😑, but he is back working full time and, so, what more should I ask from God??
I just don't want to add to my daughter's stress..she has been just amazing through the horrible hand they have been dealt...now this.
So,. I do have my best friend who has come to every appt with me and so I am grateful for her!!
Also, for caring people like you!
Where were you treated?
Thank you so much for sharing your story with me❤️❤️

Dear Lois, After my lumpectomy, I was referred to a radiation oncologist. He said, given my surgical results and scans, that he would not recommend radiation, that it would not add a day of extra time to my lifespan. Whew. Very reassuring. My oncologist and surgeon did not recommend chemo as I already had an auto-immune condition (Psoriasis). ( Before the surgery, they also did not recommend a mastectomy. ) A third alternative was immunotherapy, the path I chose. I now take one tablet at 1 mg dose of Arimidex ( Anastrozole) per day. I'm halfway through the 5 year treatment plan and so far, so good. Side effects are hot flushes and some grogginess when I wake up; I don't drive a car until the grogginess goes away. I can't drink wine or other alcohol. For hot flushes, 3 of my doctors recommended Venflaxaline, but it made me nauseous so I quit. Nearly 3 years later, the hot flush intensity has faded.
You should share with the closest members of your family what you are feeling. They really want to know and help. Do not shut them out. That will just make them feel more helpless, guilty, etc. You WILL feel scared, and the first time that happens, you will feel scared that you feel so scared. This will pass. Think of this fear as a wave coming toward you. Just ride the wave rather than resisting it. I found it helpful to immediately start an ordinary task, like unloading the dishwasher or sweeping the floor. The very ordinariness of our (my) daily lives and tasks seems to "reset" the brain.
Keep in touch. --Nancy

Hi Nancy,
Thank you for your reply.
I, too, have Lobular
carcinoma..I can barely stand to say it.
I am having a lumpectomy on Monday.....I wanted a double mastectomy but apparently Medicare won't cover removal of a healthy breast without a strong family history, which I do not have.
Also, Dr says that would be overkill..idk.
They didn't see any lymph node involvement on the scan but won't know for sure until after surgery.
I may need radiation but I am not willing to do chemotherapy.
I'm 71, just don't want to go through it.
Can you tell me if you needed any other treatment?
I will probably have to take an estrogen blocker 😒.
I'm trying not to let my family know how scared I am..but God knows.
Hope to hear back from you.
Thanks for contacting me..Lois