Just Diagnosed--ILC

Well my situation was similar, I had two 1cm tumors one ILC and one IDC, nottingham 5 & 6 respectively. My mitotic rate was 1 in each case. I also was told treat IDC same as ILC. I was post menopausal. Er 95% and Pr less than 1% her2 negative. My oncodx was 34, but I chose no chemo and did a mastectomy no radiation and AI drugs.

Five years out doing ok, AI drugs I believe helped keep the cancer away. I had a DIEP reconstruction looks good matches my real side. I did not have skin sparing mx because tumors were close to the surface.

Good luck to you

Are you asking for genetic counseling? A diagnosis so young (under age 50!) should qualify, especially with family history. Depending on when your mom's BRCA assessment was done, there may need to be further analysis such as rearrangement testing or use of a broader panel to see if some other mutation can be found.

That information could inflence the lump vs mastectomy and ovarian removal decisions as well as help consider whether radiation should be avoided. When DNA repair genes are defective, the tissue damage that occurs is potentially more serious since cells cannot fix themselves which sets the stage for local recurrence to develop.

You are certainly doing a fabulous job on educating yourself. How great to have hubby along as note taker at appointments. My personal inclination might be to choose MD Anderson due to their excellent reputation. Don't be overwhelmed by the big campus/large institutional environment. I switched from a local community hospital to an academic medical center because of surgical expertise. It's good if you can select the best health care available.

HI, just chiming in to give you a breather. I was also 49 at dx. Seems like a common age. Also no family hx (though Ashkenazi Jewish on both sides,) and BRCA negative. Mine was found on a routine mammogram. Had an MRI which showed a second smaller tumor in same breast. Had unimastectomy and ended up never doing reconstruction and I'm ok with this. (Had mx because the tumors were remote to each other and would've left not much breast.) Had oncotype, 17, so no chemo. Took tamoxifen for 2.5 years, then had oopherectomy and switched to an AI, Lestrozole. Also took bisphosphinates IV twice a year for first three years. I was OK on tamoxifen and am fine on AI. New plan is to be on hormonal treatment for 10 years in total. I changed my diet to be much healthier, swim and walk a lot, try not to sweat the small stuff and have a good quality of life. I do think that this is a big part of the whole picture as we can only do the best we can and it feels good to do that which is within our control.

That first year is rough. Don't read too much online as you can torment yourself with half knowledge. Learn enough and then find a Dr and a center that you trust. They have a lot more experience in treating BC than you do. It's ok.

Wishing you good luck. Hang in and pm for moral support if you need.

Don't presume your tumor will be larger. Some gals actually ended up with smaller masses.

I'm sad to say, "follow up" varies a great deal. We have had quite a few posts here with ladies asking what is being done.

My oncologist doesn't believe in tumor markers (too many false results). I have no boobs to scan and even though I've suggested ultrasound, I remind myself that ultrasound never picked up my cancer when it was still in my body. Talk to the people at MD Anderson and then create a team you can trust. I dumped my first oncologist in WI because he treated me like a child and when I brought up scientific articles, he never heard of them. Bye-bye to him.

I'm sorry you have a small son to add to your concerns. I was fortunate not to have kids, which was/is one less worry in that area.

And your emotions will go up and down and around and round.....It is great to hear you have a strong support at home, the ability to travel for good care...and then like all of us, we sit and cross fingers and wait.

Best to you!

I'm in a similar situation. My ILC was missed by a mammogram and MRI, and picked up by the ultrasound technician only because I insisted they hadn't found it and pointed them to the area. I had to perform acrobatic maneuvers for them to finally find it. Given this and the fact that I have very dense breasts, I also questioned a mastectomy and my surgeon was adamant that this would be a mistake and that a lumpectomy with radiation is as effective in minimizing recurrence. I requested a second opinion and he concurred. They were both categoric about it.

Hope this helps!

I have alternating mammograms and MRIs as followup. I do each one yearly, but alternate every 6 months. I pushed for the MRIs because my yearly mammograms and ultrasounds did not find my tumors (dense breasts).