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

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!!!

@lhwoz, what did you decide as next steps? How are you doing?

Hi @trishc, how are you doing? Don't forget that everyone reacts differently to medications and that people who do not experience challenging side effects likely do not report on a forum like this one. So it can give a biased view. Forums like this one help women cope with managing side effects and discussing options.

Your oncologist will review the various options available for you, and the pros and cons of each. Ultimately, the decision is yours. You are in control. Did you have the consult with the oncologist to discuss hormone treatment?

Hi there
New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and sentinal node removal last week and found out 1 node had "rare isolated tomor cells". My margins weren't clear so I have to go in for re-excision. I am feeling very anxious about lumpectomy decision bc possibly mastectomy could be done. But Ive been advised that outcomes were same for both options and conserving breats more ideal for me? I am small chested and feel like if it doesnt help outcome why go thru all surgeries/spacers and implants? The plan is radiation starting about 4 weeks after final re excision and unsure about chemo, then the hormone blocking meds for post menopausal. You seem to be in similar situation and to everyone reading does this seem on par with your plans if similar? Were you recommended same plan? Any input so welcome. This all is just brutal. Oh and FYI I had been on HRT for 5 years bc menopause was so rough (i am 55) and MD said I was a good candidate bc no history of breast cancer.

Hi, I’m new here, I really don’t know what is going on with me, I had 3 months ago severe pain in my left breast, so much so I had to hold it up after taken my bra off put heating pad on it, could not put any pressure on it . I have pain in my left shoulder and skin is very weird feeling when I touch it, almost like it’s numb but not the same numbing feeling if like my hand fell asleep. I have a spot on my arm pit that just seems odd to me, had it looked at a few years ago they said it’s fine. I also have a lump in my neck on left side, the pain in my breast is no longer as painful but to touch it hurts , most days it’s just a dull pain, I do have a hard spot on it, and twice now I have had a cyst on the outside under the breast that I have had drained. I have just recently been and had a mammogram and all is fine. I don’t think it is I just feel off. I would really appreciate any help. Thank you.

I had the diagnosis of ILC on Nov. I had a lumpectomy and sentinel node dissection on the 18th of Nov. 1.7 cm mass..no node involvement ..sentinel removed..10 nodes checked ….margins clear. Mass was ILC ER+ PR- Her2- .Had balloon brachytherapy Dec12- 2x a day for 4 days. Fu next month with an oncologist to see about hormone blockers. I am 76 and will do my research to see about the blockers..have not heard good things.

Hi - Hang in there and so understand where your "are" - I finished my 19 radiation treatments last week and my onco likes to wait two weeks post radiation to start anti hormone meds. I'm 57 and will start on letrozole which I've very anxious about but taking one day at a time. I think your plan for re-excision sounds very similar to what my plan would have been had my margins not been clear. Once you get your oncotype results you will have a better roadmap in terms regarding if chemo would be part of the plan. I also was anxious about lumpectomy vs mastectomy but I am now very comfortable with lumpectomy decision as the science really does say in our cases the mastectomy doesn't impact the rate of re-occurrence. Don't look back on HRT treatment as who knows whether that had any impact. Keep us posted and hang in there!!

Hi there
New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and sentinal node removal last week and found out 1 node had "rare isolated tomor cells". My margins weren't clear so I have to go in for re-excision. I am feeling very anxious about lumpectomy decision bc possibly mastectomy could be done. But Ive been advised that outcomes were same for both options and conserving breats more ideal for me? I am small chested and feel like if it doesnt help outcome why go thru all surgeries/spacers and implants? The plan is radiation starting about 4 weeks after final re excision and unsure about chemo, then the hormone blocking meds for post menopausal. You seem to be in similar situation and to everyone reading does this seem on par with your plans if similar? Were you recommended same plan? Any input so welcome. This all is just brutal. Oh and FYI I had been on HRT for 5 years bc menopause was so rough (i am 55) and MD said I was a good candidate bc no history of breast cancer.