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

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

Dear laf70, I had a lobular carcinoma removed at age 72 in 2019. It was discovered entirely by accident as my surgeon was originally doing a surgical biopsy because I have dense breasts. It's normal to be scared. It's not like we non-doctors encounter this situation daily in our lives. Here's what I have learned: live much more in the present moment, with a small amount of attention to the future, and none at all (if I can help it) to the past. I needed to increase my patience and persistence, which I had in moderate supply. I treat my health routines, from exercise to diet to appointments to dealing with all that paperwork, as a part-time job, to which I give it the same kind of attention I gave my workplace job. Tell others--friends and family-- about your diagnosis and treatment plans. They will respond with unexpected and overflowing support that you will treasure. --Nancy

Thank you! Great tips. I am in CA and we keep heat generally low/off. I am not looking forward to tge post radiation meds but 1 step at a time! I think I'll be starting radiation in about 3 weeks or so. Have some healing to do still

Thinking of you! Hot flashes interrupt sleep which can make for a long day-not sure where you live but I'm in MA and air is so dry in our home with heat on and Letrozole not exactly helping with that:) I have a humidifier that I blast on high as close to me as possible which really has been helping. You're doing all the right things so hang in there. Keep us posted on your onco results - I was fortunately able to skip chemo and finished 19 full breast radiation treatments end of January. I recently started the Letrozole and am dreading side effects as I realize they are cumulative. Joint pain upon waking but movement helps and I might try glucosamine and collagen type II as many on this site have recommended. Vaginal dryness has really been a side effect for me and my onco prescribed those little vaginal low dose estrogen suppositories that I'm going to try - while I'm 57 and estrogen positive both my gyno and onco recommended. Hang in there!!!!

Thank you! Appreciate any tips at this point.

I am also doing a fairly drastic sugar detox to just remove processed/refined sugars bc when I've done in the past it helped sleep and reduced headaches drastically. Hoping that helps.