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Radiation and Invasive Lobular Cancer

Breast Cancer | Last Active: Mar 10 6:55pm | Replies (34)

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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.

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Replies to "I have 2 tumors of invasive lobular carcinoma in my left breast. The largest was 6.7cm..."

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.

@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?