BC Standard of Care does not apply to ILC

I agree that GPs need to be better educated about ILC.

Interesting your onc talked about ILC manifesting itself on the nipple, lrsreyes--mine was actually up against the chest wall. Also, I'm premenopausal, so I wouldn't fit into the scenario you described. I think there's such a wide range of presentation of bc in general that it's very difficult for the docs to be on top of it 100% of the time.

Same here -- post-memo, HRT, clean mammos & u/s's -- until a suspicious area (actually a bit of ductal) showed up.  That ductal turned out to be small component of or adjacent to a larger lobular lesion -- plus I had 3 smaller lobular lesions (multicentric disease).  In the beginning, I was incredulous and angry that my bc, which was already in 1 node, hadn't been detected sooner.  But the more I read here, the more I am grateful that it was found when it was.

I don't know what the answer is re. educating docs, but I think there's a huge information gap, especially with GPs, PCPs, and OB/GYNs -- not only when it comes to lobular, but to the more rare forms of bc, such as IBC.  If anyone has any ideas re. how to influence a change, it's something I also think about a lot, because the status quo is beyond disappointing.    Deanna

2.1 cm tumor way up on upper inner section of left breast, tucked between skin and chest wall. Premenopausal, no age spots or freckles or sore spots or abnormalities close to the nipple or anything on the surface of my breasts at all in my case. Just a lump that felt like perhaps part of a rib, up outside the area that was mammogrammed for seven years. BCP's, not HRT. I am not aware that there are diagnostic tools that would point to ILC...

I do think that there is some relationship between a weak immune system and cancer - whether your immune system is weak and it allows cancer to grow or whether cancer weakens your immune system isn't clear to me - so I could see how there might be things like sores that don't heal properly or other odd immune system things present in a woman who also has breast cancer. So perhaps that's what's up with your spots???

Like many of you, I had years and years of mamograms that showed nothing, except they all noted that I had dense breast tissue.  I found a tiny dimple on my R breast 4 months after one of these-- in my case useless-- mammograms.  Ultrasound showed a 5.5cm tumor!  I'm taking responsibility for making the decision to take HRT, but I'm so angry that my gyn nurse seemed clueless about ILC and how hard it is to detect on dense breast tissues.  Don't you think they would want to take a closer look at dense breasts after writing 8 yrs of RX for HRT?

I've been reading a lot about ILC and I haven't seen one article talking about these spots? Do you know where I can find some information about this?

Hi everyone,

Mine ILC luckily formed a lump, which I found. Maybe the lump was the "ductile features" they found in there at surgery. Nothing ever showed up on a mammogram but dense breasts and no one ever told me that dense breasts were a problem. The tumor was found with ultrasound. I took HRT for way more than a decade. It seemed the logical doctor approved thing to do after a hysterectomy at 35. I also have an autoimmune disease, rheumatoid arthritis, kept in check with methotrexate. Are we forming a pattern yet? 

All in all, I feel incredibly lucky to have found it at such an early stage, but kind of at a loss as to what to do to protect myself and my remaining breast now.  My onc says that mammos are still the best thing we've got, and MRIs every two years. Not reassuring.

No kidding!

Onc says they give too many false positives. That's not too reassuring either, but perhaps better than missing BC. I'm going in for my 'one year later' mammo and a ultrasound on a palpable lymph node in a few weeks. I will be watching to see if they are extra vigilant with me.

Ah yes, eat less crap and exercise more. The elusive goal. I will achieve it, really, I will. And I also will continue to scare my friends into self exams. My dense perky remaining breast is small and easy to examine, no where to hide.

Irsreyes- My ONC likes Femara. But he didn't tell me why. I'm menopausal, but I know that some take another AI first and then Femara. I hear of so many different treatments. I trust him.

You were good to your friend.  

I'm post menopausal and take Arimidex.  No one has mentioned Femara.  I'm not sure what my oncologist will do from here because my bone density test showed some issues with my left hip.  They can't tell for sure because I have some arthritis in that area and it can give a false read for bone loss.  Because I have TMJ, they are afraid to give me meds for bone loss as they can cause degeneration of the jaw bone.  I may end up on alternative treatments as my only choice as I am 59 and don't want to spend my elder years as a hunch back.  I started a thread about this and there are several others in the same position.

Rosann

Iriseyes----the AIs (femara / aromasin / arimidex) are used for after an invasive bc-----they aren't  approved for use with LCIS;  only tamoxifen (pre or post meno) and evista (only post menopausal) are used preventatively for high risk. Only tamox for DCIS (I'm not sure if they use evista for DCIS or not). Have her talk with her doctor and see what is the best option for her. (I had ruptured ovarian cysts while on tamox, but it is a very uncommon occurence--a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries is a good practice.)

anne