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

It took me about 8- 10 weeks after the bilateral to really be able to move my arms the way I normally do. I did pop a stitch under my arm reaching to get clothes out of my front load washer about 3 weeks after surgery thinking I was fine to do that. So I should have been more careful! That may have set me back. After speaking with my surgeon's office, I was able to heal it on my own with saline and gauze packs. Not sure about bowling tho, you will know when you are ready. One morning you will wake up and think gosh I actually feel like my normal self! I had my morning energy back about 6 weeks after the bilateral but I had fatigue every afternoon and had to take a long nap. I just did all activities I needed to do in the mornings. Then finally 6 months out the fatigue is over. They told me at Mayo that fatigue is a complaint they hear a lot and it's due to a combination of things including what your body has been through and the emotional part of it. I'm sure being 70 has something to do with that also. But that was me, you and others may not experience that. That's good you don't have to wait too long for your surgery and treatment plan. Sending love and healing wishes to you and all on Connect❤️

Hi:

I am getting mammogram and ultrasound on both breasts and then 6 months later mammogram and ultrasound on just the lumpectomy breast. Then both at next year point and most likely lumpectomy breast 6 months later of mammogram and ultrasound.

I switched to a new site. Another site affiliated with one of our hospitals offered just mammogram once a year and I was told that it was their guidelines. I did not think that was good.
I realize that the MRI shows more for ILC.

Thanks for sharing! I will report back after my mammo on 10/10 at Dana Farber - that's technically one year mark since last mammo which did catch my lobular but had been called back the year before and nothing was noticed. The MRI I had to help with surgical decisions showed a larger 1.8cm of ILC. I did not get great margins all around so did a boost of radiation for the final 3 radiation treatments. I am hoping I can have an MRI in April 2024 but not sure my insurance will cover which seems to be the problem with many I hear. Early detection is all we have so why not offer us gals with lobular and very dense breasts a better shot with MRI?? If anyone has had luck getting MRI on alternation pattern with mammo please let us know! thanks so much xoxoxo

Good morning my lobular sisters. Love this subject about imaging and how we are the unfortunate gals whose cancer is unlikely to show up, yet they lump (no pun intended) our treatment right in with ductal as if it's going to work. Are there any large groups out there advocating for more accurate imaging, like the MRI, for lobular cases? We deserve a fair shot at being detected early like everyone else! Mine was detected in 2012 and dismissed, then diagnosed in 2017 (same exact area) followed by a DMX. Maybe all of those million$ they raise for awareness could be used to help us? I think we're all pretty aware now. The 10 to 15% of us need to be acknowledged. 😤
I am also in a position I am very angry about, I have no oncologist. I moved and I interviewed one at Florida Cancer specialists and she did not know much about lobular. The one before that also didn't know much. I am weary of educating people with medical degrees on how lobular is different.
When I get a little more settled in my new home, I think I will be doing a lot of research and contacting some big names and groups with big money to see what can be changed. If they need a louder voice, I would invite you all to make some noise too.

ILC, bilateral mast Jan '23, 1A and 1B, 6 cm on one side, multi foci on other, no nodes, clear margins, chemo, radiation.

My dr plans to follow up with CAT scan of chest, abdomen, pelvis in October. I asked about MRI (that's what found it at diag) ... he said mri is too focused, not useful for searching. I'm also curious about PET, I see that mentioned a lot,, seems like that's how people's mets are found sometimes? But again, Dr says too focused for searching. Is this the explanation/understanding others have?

FES-PET scan. Please go on this link, research everything about lobular and doctor Ulaner. He has done so much research and is so up to date with the latest techniques and imaging for US. He is a radiologist and knows what to look for if there's lobular. I actually hired him a couple years ago simply to look at any imaging scans I have. He is in California, I am in Florida. Before I leave a diagnostic center, I get two CDs. One for myself and one to mail to him.

I'm not sure who or what qualifies for this particular test, but if it works, we should all have access to it. We have to be our own health care advocate, just because the doctor doesn't want to give it to you, check your rights and see if your insurance will allow it. Or find a doctor who will give it. Not sure what the injectable is, be sure to check with your other doctors if you have any kidney or liver issues. I'm in the same boat, just starting to look into this

Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working on increasing awareness and research. I'm going to the International ILC Symposium in Pittsburgh next week where latest research into scanning and therapy will be presented. A lot of people are working towards making treatment and imaging specific for lobular

Thank you so much for your involvement in this. Please post what you leaned or share a link if it will be videoed.

I'm working wigh ANC of 632 but hoping fir improvement by next week. I meet with lobular onc virtually next Tuesday and if all is a go I'll head to Pittsburgh. I registered for the symposium and didn't see anything about streaming. I'm hoping LBCA will have if on video after. LBCA does programming and interviews specific for lobular.

Wishing you well. What is LBC?