Radiation and Invasive Lobular Cancer

I received radiation at Siteman Cancer Center, part of Washington University in St.Louis, MO. I was originally told radiation 5 consecutive days. Was so happy to do it only once! I have no burned skin with only one treatment. Had some soreness for about a week so not bad at all. I will be followed by rad oncology and med oncology for at least 5 years. I also am taking Exemestane with absolutely no side effects. I chose that aromatase inhibitor because it is steroidal and is more bone protective than the others. I was diagnosed with osteopenia prior to my breast cancer diagnosis!

Thanks so much for circling back! Excellent that you were candidate for proton beam AND that so far so good on AI's which I am very anxious about. I too have osteopenia and learning about options. I will report back after I meet my oncologist next week as I will then be 2 weeks post-op. It sounds that unless proton beam, the protocol is daily for 4-6 weeks. My insurance doesn't cover proton beam with prior authorization and it doesn't sound like even MGH or Dana Farber in Boston would help with that as I understand most proton centers want to promote their high authorization rates and if not pediatric, head, neck, spinal not sure breast would be covered. Love to hear more if gals have had luck advocating for proton beam with their insurance companies. Thanks!

I have 2 tumors of invasive lobular carcinoma in my left breast. The largest was 6.7cm on MRI (now apparently after 3 months of letrozole, 5.5cm by my oncologist feeling it?). I had my appointment with a plastic surgeon today re immediate DIEP flap reconstruction with unilateral mastectomy. He said he wouldn't do the DIEP Flap at the same time because at that size he thought I would probably need radiation therapy. (Lymph nodes were clear on ultrasound up until now). Oncology surgeon says she won't know until the pathology comes back from the mastectomy if lymph nodes are involved. Don't want to separate the surgeries. (Over 12 months difference, more deductible costs, more pain.) Will I likely need radiation? Anyone with large lobular tumor have any experience of mastectomy, then radiation, then DIEP flap later? Tissue expander seems horrible to me, didn't want to go that route. More surgery, more cost, more pain.
Is radiation necessary? Don't have a radiation oncologist to ask (won't give me one unless I need radiation.) Beginning to hate my oncologist.

I met with a radiation oncologist to discuss radiation and didn't have it. I don't see any reason why you can't just make an appointment to discuss.

I don't really know if the size of your tumor warrants radiation. I think that after the mastectomy you will know more. For instance, I did not have any cancer cells in my lymph nodes but pathology showed some in my lymph vessels.

I assume your tumor is ER+ and HER2- since you are on letrozole. Have you had an Oncotype yet?

I have experience with a masectomy and 5.8 cm invasive lobular no lymph nodes involved. Because it was a large tumour and was Triple Negative, an aggressive cancer, I was advised I would need radiation. Mine was every week day for 3 weeks. It does not take long and you can go back to work after. I had a little fatigue and a little redness.
Hopefully your oncologist will help you with what you need, my surgeon told me I would need radiation as well as my oncologist.
Pathology of your tumour guides them on your treatment, the hard part is waiting.

Good luck on your journey.

I wondered if anyone else has had prior authorization for proton radiation after mastectomy. My tumor is 5.5 cm and left sided . I’m concerned about my heart . Oncologist won’t even mention radiation until mastectomy and check if nodes positive. If it takes a long time for prior authorization I may need to start working on prior authorization approval .My cancer center does not have proton therapy so I do not think they will even mention it to me.

@tinksmom, I moved your message to this existing discussion:
- Radiation and Invasive Lobular Cancer https://connect.mayoclinic.org/discussion/radiation-and-invasive-lobular-cancer/

I hope you saw the helpful posts from @windyshores and @dolphina3. I can understand your wanting to get both the mastectomy and reconstruction done at the same time. If radiation is necessary, this may not be advisable because radiation can cause changes to the reconstructed breast and increase the risk of scar tissue. However, it is also true that your team will have more information only after surgery about the possible need for further treatment.

It's not an easy decision. Have you given it more thought?

Colleen,
Thank you for your reply on this. You said something that hadn't hit home for me. It was a lightbulb moment. I am undecided what to do about my ALH/LCIS diagnosis after biopsy. I've seen several doctors for their opinions and had a plastic surgeon breast consultation. I was assuming in my head that skipping the lumpectomy and considering double mastectomy would skip some unnecessary steps and remove further possibility of getting BC or repeat offender incidents with ALH/LCIS. I did not think about the possibility that if they did mastectomy with reconstruction and what they find is more invasive than what the biopsy showed, that radiation might be recommended and tamoxifen for 5 years too--AND TO YOUR POINT--RADIATION CAN CAUSE CHANGES TO THE RECONSTRUCTED BREAST AND INCREASE RISK OF SCAR TISSUE. I'm trying to figure out why I didn't think of that? Why I didn't ask that? Why I wasn't told that. I had it in my head that once you do the double mastectomy with my situation, that you do not have any of that other protocol (yearly mammograms/ yearly MRI's / yearly ultrasounds) you don't have to do the tamoxifen either. Would it be fair to say that there is a pretty good percentage of people that definitely do the lumpectomy first (even if they plan to do prophylactic double mastectomy) to confirm with certainty that they do not have cancer that the biopsy didn't show? I don't know...just curious??I learn more every day!

Mine was also left side so they teach you a breath holding technique that protects your heart. They have ways to help you with this. They have you go for a , I call it mapping where you will do breath holding and they put tiny little dots in a few places that help them line you up for treatment. They usually give you time to practice before any treatments, I believe if people have medical problems with holding the breath they have another option to help with that. It is doable and treatments don't take long. You will be amazed at how little time if takes and then you go about your day. Usually you check in with in my case a nurse and she asked how I was doing, this was once a week. I am 2 years past treatment and doing well. Ask questions of your team any time you need too.
Good luck and thinking of you.

Hi it's Selwena just checking in. Have you had your surgery yet? How are you feeling? Just wanted to check in on you. I was thinking about you. Hugs and love.