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

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.

Hi those darn hot flashes. I wore cotton nightgown that are more breathable than synthetic material and kept water by the bed side. Excersize seemed to help, too. Good luck with everything. Thinking of you.

So good to see that things are going well, for the most part. I'm tagging fellow members like @semurrey @npigford @dolphina3 @selwena @ilcpfightee @beautybldr @rarelybees2889 to see if they have some tips on getting better sleep with the dreaded hot flashes and night sweats.

It sounds like you're doing some things that can promote good sleep, like exercising and getting outside and enjoying life. But those darn hot flashes.

So sweet of you to check in. I am doing ok, seem to be recovering from re-excision. Still sore and wearing compression bra, and icing with occasional ibuprofen. I will resume some longer walks and hikes this week and then asking my surgeon what I can do at gym (working out, even if light and little bits, drastically improves my mood and outlook) . This weekend we went to visit our daughter in college and for 2 days life felt a tad normal.

I am awaiting the results of the labs from re-excision to see if margins were clear and hoping so. If these are clear I then await Oncotype and also an Ambry genetics blood test that did to determine next steps. if no chemo the plan will be radiation for approx 4 weeks, seems to be the norm?

My sleeping has been terrible, hot flashes/night sweats...really since late December when I went off HRT. Will this aspect ever subside? Ive started occasionally taking advil pm but just trudge on thru really. After these surgeries, though, I suddenly have back pain while sleeping? It's so strange, but maybe bc I was a stomach sleeper and just not used to it?
Any advice welcome!!!

Thanks..I have the consult on Feb 23rd. They had to cancel the first appt in Ian… don’t know why.