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

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?

@timely So sorry to hear about those side effects. I do think the docs should get together at the start and tell us more about our choices. I feel that "You'll have to take a pill for 5 years" is thrown out and no one is prepared for the side effects of losing estrogen. Dryness is one thing but what you are describing is something else. I too am ILC stage 1b. lumpectomy and 15 days of radiation. I'm on anastrozole and, knock on wood, so far have no terrible side effects. A friend of mine did complain about letrozole and was switched to anastrozole with better results. We are all different and our bodies react differently to these meds. I am leery of any of the prognostications that might be made on a mixed base of patients, ductal and lobular. I would like to see lobular only data. This cancer is diffuse. The cells scatter and travel and can show up undetected in the lining of our stomachs, brains, ureters. Creepy. And it does not respond well to chemo. I too am in my late 70s and I don't want to go out, fighting one of those dreadful situations. One of the articles I read said that Mammoprint, Oncotype do not apply to lobular. ??? And yes, I too would like to hear more about lobular on this thread which, thank goodness, is dedicated to it.

I’m 1.5 years out and tried all AIs and now on Anastrozole. I have all those side effects worse Achilles and elbow tendinitis. Joint pain. My mother passed from this cancer so I’m stuck on them. But so glad to hear your thoughts and research. I have a list of questions at my next appt. I did give up all alcohol so I won’t get any nausea! I good thing I say!

At close to 70 with ILC at the same stage as you, I chose not to take any AIs. I had very low risk factors, (genetic testing, etc.) and after 5 targeted sessions of radiation, my oncologist told me AIs would reduce my "overall risk" by 1%. Not worth it to me, in the final quarter of my life. Quality of life is great. However, with that being said, I know it goes against the grain of recommended protocol. My medical oncologist, once I told him my decision, said, "there is a growing sentiment amongst the medical community that we may be over treating early stage breast cancers". Who knows, it is all SO confusing!!! Basically it amounts to me be very comfortable with assuming the risk, and many are not. We are a medical family and I am constantly reviewing all of the studies, etc. I am so hopeful big changes in treatment are coming soon! Good luck with your decision. It's all a crap shoot with no guarantees. Just had my first set of scans post treatment (about 8 months out-it got delayed) and all clear so far!

Has anyone with ILC stage 1B stopped Letrozole?
Have they taken anther AI or stopped ?
I am At 2 1/4 years point of Letrozole for a 3 months vacation.

What are the repercussions of stopping at age 77? At 3 years point point since lumpectomy.
Side effects made quality of life not happy, to say the least.
Increased arrhythmias, total exhaustion, leg pain, burning legs at night, developed neuropathy and Achilles Tendonitis last month of Letrozole.
Bone on bone arthritis in both knees and developed muscle weakness and hard to walk.
Only choice left to take is Exemestane .
Do not want carpal tunnel syndrome and lymphedema of legs or arms. I already have breast lymphedema and these these are known
side effects of Exemestane.
Do not want to end up in a wheelchair and continue to take an AI.

Maybe I am just looking at the negatives.
Have Aromatase Inhibitors Muscle and Skelatal Syndrome..

I totally agree. It is so different than other cancers. A separate forum would be great.

Good morning ! I would like to see more about ILC. Take care everyone. This has been quite a journey.

Me too

I agree. While it's not as rare as initially thought, I have encountered an incredible amount of lack of knowledge about it from healthcare providers. And definitely more research is needed. I've looked to the LBCA for information (Lobular B C Alliance).

Hi! @otas:

I am so sorry for what you've been through, and my heart and prayers go out for you upon reading your post!

Thanks for this valuable information and for posting this important question! Unfortunately I am not a medical professional, but I am aware of the fact that E-cadherin is a protein essential for maintaining cell-cell adhesion and the overall integrity of epithelial tissues. It acts as a tumor suppressor, preventing cells from growing and dividing too rapidly. Please bring up this issue with your care team, because lacking of this protein can cause serious implications in cancer treatment plans. If your current care team can not (or will not) address this issue, please seek out a 2nd opinion for your best treatment plan.

Best wishes on the journey ahead, for our prayers are with you along the way!