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

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

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!

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.

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)

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

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?

Hi Timely,
my treatment plan is:
--Breast MRI once a year, alternating with
--Mammogram once a year. It's a Diagnostic Mammo, technically bilateral diagnostic mammo digital with CAD.

So, every 6 months I have some imaging done.

Anti-estrogen: I take immunotherapy medication Arimidex, 1 mg once a day.
My oncologist and my breast surgeon are in charge of keeping track and writing the orders for the scans. I see each of them in their office once a year (alternating every six months) and each performs a breast palpation. Records are on-line so everyone can see what's happening and the results.

I also had genetic testing and counseling after the surgery. The testing is free, the counseling is not. A very good idea, as a gene showed up that was mutant. It affects not only me but potentially my 3 nieces, 1 nephew and numerous first cousins, for breast and prostate cancer. Armed with the official letter from my health care service (Sutter), one of my male first cousins went to his doctor, had the genetic testing, and results showed he also had the mutant form of the gene. Doctors looked further and found prostate cancer.

My thoughts are with you as you undergo your treatments. Although the treatments can be scary, try to focus on the present, on the things you love, and those who love you, and don't worry about the future. --Nancy

Hi Nancy:

I so much appreciate your information.
My last radiation boost therapy is 3-01-2023 which is the last of 6.

As far as prevention/checking afterwards, I seem to have 2 choices:
1) Mammogram once a year only. (That site claims it is their new guidelines.) I have to confirm it is a 3D mammogram myself as ILC will not show up on regular mammogram.

2) Mammogram and ultrasound together once a year.
Radiation Oncologist in 2nd time I asked about 1) site, said that most patients do not want to have an MRI. They do not endorse an MRI. But, ILC shows up with MRI's.
Neither of these sites balance every 6 mo.

3) There may be a 3rd site which I could check yet.

From what I have read, ILC does not show up at all if one just has an ultrasound. It would show nothing...and is not useful for ILC.

****One does need to have a 3D mammogram to see ILC.
I was told that if I had had my mammogram earlier than August 2022, they would have found nothing..Plus, normally, the next mammogram would have been August 2023.

I need some feedback from everyone as I have to make a decision on this on Monday Feb. 27th, 2023 when I see the Radiation Oncologist. He is advocating a once a year Mammogram which would be thus next August 2023 and then next August 2023.
There would be a balance of every 6 months to see either the Radiation Oncologist or Breast Surgeon. They alternate these visits with their nurse pra tioners every other visit.

Timely, Every person's body is a bit different , and I am not a medical doctor. But I would ask (1) do you have an oncologist (in contrast or in addition to a radiation oncologist)? (2) If so, get your oncologist to go to bat for you with the breast MRI-and the 3D diagnostic mammogram. I have never had a problem with Medicare or secondary insurance in getting these covered. Speak up, and if needed shout out. You have nothing to lose and perhaps a lot to gain. (I have had 4 breast MRIs, without any problem, just a bit noisier than a CAT scan. Whoever told you most women do not want to have a breast MRI may not have had the full facts in front of him/her, to be polite. ) --Nancy

This was the Radiation Oncologist who said this. The first time he said his hospital group is advocating mammogram only as the new guidelines and implied that the other groups were wrong and in past. The 2nd time I asked him, he said that most women do not want MRI's. (His hospital group may not do them without a push on my part.)
The other group is doing mammograms + ultrasounds in the same visit. But ultrasounds do nothing and show nothing for LCI.