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

Breast Cancer | Last Active: Sep 23 5:01pm | Replies (556)

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I hadn't heard that oncotype doesn't apply to lobular cancer but I do know from all my research that most of the data and research isn't focused on lobular cancer since only 15% of women have this type of cancer. Honestly I am six months into to taking letrozole. I had stage 1A lobular - no lymph node involvement Grade 2 cancer. So I did bilateral mastectomies to reduce chance of it coming back in the other breast. I spoke with my oncologist and she said I had a 8% chance of long term re-occurance while taking letrozole and it is the best choice for lobular cancer. I have some joint pain and hot flashes and have had hair thinning. I take Bonafide Revere for vaginal dryness and that works great. I find that exercise is the best medicine for the joint pain and stiffness. Get into a gentle yoga class and lift weights for your bones. I have some osteoporosis in my hips and they immediately wanted me to do Prolia but my GP and breast surgeon said no - they both said lift weights and take calcium and D and magnesium and see where things stand in two years. I also read a study someone on this site shared that said people could take letroxole every other day with the same result but experts say the study had too small a sample. The fact is it has a 48 hour life in your body so taking it every day means you have higher levels than you might need? I would like to see some experts weight in on this. I am also 70 - I am very fit and active but I feel for those of us who feel torn between risking a return of cancer or living with horrible side effects for 5 years minimum. More research needs to be done for lobular cancer. Is anyone monitoring this site from Mayo able to answer our questions?

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Replies to "I hadn't heard that oncotype doesn't apply to lobular cancer but I do know from all..."

Good advice about weights and yoga. Mentors like me are reading these posts, and commenting from time to time. Medical advice is not given here, just shared personal experience. I'm not sure exactly which questions you are asking. But, for example, your oncologist is probably the best person to consult with about taking the letrozole every other day. But I am going to pass this on to a Moderator who might have some suggestions about links and articles related to Mayo and lobular cancer. Thanks for adding to the discussion.