Radiation and Invasive Lobular Cancer

Welcome, @kks. there are a few members here living with invasive lobular cancer who have had or are considering radiation treatments, like @delormv @wendles @kszilvia @ilcpfightee @pharmmom4 @jackiestack. They may be able to share what went into their treatment decision making and their experiences with radiation.

You might also be interested in this related discussion with the ILC-ers hang out:
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

KKS, is radiation being discussed as a treatment option for you?

I have an appt for a second opinion at Dana Farber on Nov 4th for atypical lobular hyperplasia. A year ago I had invasive DCIS a year ago, which was treated with lumpectomy, chemo, and radiation. I don’t have much info to share about radiation for ILC. If I receive more info in November, I’ll definitely pass it along. I wish you well! 💗

I had a lumpectomy a little over 3 weeks ago and have signed up for a clinical study OPAL at M. D. Anderson which will include one week of radiation targeted around the area where the mass was removed. I will start Anastrozole immediately after. I also was diagnosed with Osteoporosis about the same time as the breast cancer and will be starting on Fosamax. It has been very insightful to hear the experiences of others with ILC.

I have been diagnosed with invasive lobular carcinoma, surgery this Thursday with recommendations for hormone therapy and radiation. My tumor is grade 1A so radiation oncologist said it depends on pathology but based on pre-op biopsy and genetics he will “most likely “ recommend 3-5 days in the same week, of radiation. But he cautioned that after pathology it could change. He also said that he is sure that if I need more it won’t be much more. He also said that because it will be short term, the side effects will be minimal! We’ll see😊. I told him whatever it takes to kill the cancer, I’m on board!

I was diagnosed with stage one, invasive lobular breast cancer almost four years ago during my annual mammogram. It’s so hard to believe that much time has passed!

Because I was triple positive, I had chemotherapy, a lumpectomy, four weeks of radiation and have been on Arimidex for three years now. I was diagnosed at 60. Naturally radiation was recommended because I had a lumpectomy. I had three weeks of targeted radiation and one week of whole breast radiation.

Because my lobular was on the left side, I chose to do the breath hold method to ensure I would not damage my heart or lung.

I took Fasamax for the first two years but have now switched to Zometa infusions every six months.

Overall, I faired very well throughout my treatments. I am being seen at the University of Pittsburgh Hillman Cancer Center where they are very well versed in all thing lobular.

I suppose my treatment plan centered more on the fact that I was Her2+ which I’m told is rare for having lobular.

I hope this somewhat helps. ♥️

Thinking of you @joanly as you recover from surgery.

I was just diagnosed with the same but mine is stage 2a. Talked about getting double mastectomy but not having to do any treatment afterwards. I feel like I’m getting the run around and want it out of me. But now I have to wait for the plastic surgeon to get me in which could be another month or later. I don’t feel I should wait that long. Was diagnosed Oct 3. Just curious how long you had to wait for surgery ?

Checking in and hoping no surprises with your surgery! I'm in a similar boat - lumpectomy is scheduled for this Wednesday- lobular - 1.6cm - grade 2, ER+, Her2- The oncologist I met with said most likely radiation followed by 5 years of anti hormone (I'm 57 yrs old) pills. I'm wondering what type of radiation your oncologist recommended for lobular. I wanted to throw out the topic of "proton beam" radiation and if anyone has had it for lobular. I'm in Boston and the only machine is at MGH and it sounds like it is not routinely used for breast cancer. I'm very anxious about radiation but like you said whatever it takes to kill the cancer -

Thanks for the check in! The surgery went great. Sentinel lymph nodes were clean! phew!! Recovery was more comfortable than recovery from the biopsy’s!! I think I have the best surgeon in the country!!! I believe I did receive proton beam radiation but only for 1 session. It was MRI guided so I received it in an MRI machine. When I initially spoke with the radiation oncologist he explained that many studies had been done with my type and grade of breast cancer and then mentioned that with patients like me they were doing a study in which they will follow me for many years. Part of the participants would get radiation 5 times in one week and the other half would get it only once. Other places have done this and have shown no difference. I agreed to be in the study and was lucky enough to only get one treatment! Yay! It went well! As I see it, the less the better with radiation! Let me know how your surgery goes. I ended up having a lumpectomy on both sides because of papalomas on the right side. They took that out and there was no malignancy so no need for anything more on that side! Please let me know how it all goes for you!!

So happy to hear your surgery went well and that you were able to get into that study! May I ask where you received your radiation? I'm thinking it was proton beam if you were able to have only one session. I am almost a week out post lumpectomy and was very relieved to hear that my node was negative. The area removed was slightly under 2cm and I meet with oncologist next week to decide on treatment plan (still waiting on oncotype). I was told upfront that std protocol for lobular was radiation daily for 4-6 weeks followed by 5 years of antihormone pills. In Boston, there is only one proton beam center and I doubt it would be available for me but I am going to inquire.
Thanks again for sharing!!