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

Hi everyone- I guess I can say I have my "treatment" plan and am moving forward. I met with a few different radiation onco and I wanted to share first my finds on the proton beam for breast. While my lumpectomy was on the right side, even for those on the left- proton beam is not necessarily better or safer. The specialist from the proton beam center at MGH explained the results as some have mentioned do carry risks like rib cage fractures but also given the expense many centers will offer for breast cancer if they have the availability (cost benefit, insurance etc involved). I also learned that there was a recent UK study done which did show similar outcomes for those treated by regular external beam radiation for a week and for those treated 4-6 weeks. However, at Dana Farber the radiation team is very conservative and this study only studied outcomes for 5 -10 years and they like to see 20yrs. I'm 57 ILC, 1.8c, ER+, HER- and my oncotype was 14. I was relieved that I could skip chemo and decided to go with the recommended 19-20 treatments of full breast radiation (I have small breasts so I guess that makes sense to me). Two weeks after radiation, I will start with Letrozole for 5 years which really scares me but my oncologist said there was no way out of that. My radiation mapping was yesterday and the plan is for me to start radiation on 12/27 (roughly a month since surgery). Hope this info helps - I will stay in touch. xoxo

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 - 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!!

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, 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.

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 @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?

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