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

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

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.

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❤️

That gives me hope! I spoke to the oncologist for the first time today and he said the same thing! He said there's a good chance I won't need chemo and maybe not radiation either. So, don't go buy a wig just yet, he said. My surgeon wants to do the mastectomy within the next 3 weeks and I'm ready to get it overwith. Then they'll study the tumor and decide for sure about chemo. I'm feeling better about it already. I just wonder how long I'll not be able to do anything strenuous. I'm a bowler and found out how much I lost not being able to bowl during the pandemic. Just starting to get back to normal and now this. *sigh*

Sorry you had a real difficult time trying to have the MRIs. Good to hear that your Dr. gave you something that did help you in the MRI. A lot of the journey we are all going though is scary. I try to stay strong and believe that all will be well.

Thnk you so much! I have not heard of the Ki 67 test so I will ask my oncologis when I meet with him on Wednesday. I was self sedated when I had the MRI's and it worked. Year ago I tried and failed. My Dr gave me a valium. All I did was cry like a baby and left without the MRI. She gave me something different the last 2 times!! I met with my radiologist for the first time today. I will be having the Encotype DX to see if I qualify for the study re: no radiation and only medications for hormone blocking for 5 years. I can stop the study anytime. I am going to as much as I can about this cancer. If my Encotype comes back high, I am seriously considering what you did. Sending love and healing wishes your way also💕

Sorry to hear that you have been through a lot. Good news about your 1a result on the occular tumor tho! That was a victory!
I did not have an Oncotype dx test either. The oncologist said because my Ki 67 test number was low at 5%. From what I am reading not all hospitals do Ki 67 tests. Not sure on that tho. Maybe you can ask your Doctor what your Ki 67 test result was. I was told if it's under 14% usually no chemo and better all around.
They told me since I had a bilateral mastectomy no mammograms or Breast MRIs now. I just will have my chest wall and underarms checked every 6 months for 5 years. If they want to do a breast MRI on you once a year and you are very claustrophobic they can give you a medication to relax you. I have heard from people that does help. Maybe that's an option for you? You probably already knew that. My Mom got claustrophobic so I know how how awful that can be. I close my eyes as soon as I get on the table of the MRI machine and never open them until I am out of the machine. That helps me.
Good to hear about your Mom being a survivor at 84! Hooray!
Sending love and healing wishes to you❤️

I think it would be helpful to have a by-line for each respondent (with permission of course) similar to the Johns Hopkins forum, which outlines type of bc, staging, treatments, etc. Since so much of this seems to be linked to age at diagnosis, might be helpful mentioning that as well.

2019: stage IIIc ILC (Left) at age 69: surgery (modified radical mastectomy for 5 tumors, clean margins, but 10/16 nodes diseased): chemo and radiation, lots of it, no side effects). 2 years Tamoxifen then Anastrazole since 2021, Zometa for 3 years after radiation. If I had the Oncotype test, I don't remember it. I just did what I was told at that point. I have my yearly Mammogram in June and yearly MRI in December (so, some kind of screening every 6 months)...Visits with radiation oncologist, breast surgeon, breast oncology and primary care (one of these every 4 months). I also check in with a cancer hospital once a year. They all say "keep doing what you're doing" and for right now, I'll go with that. Please, please, explore all the options for not only acute care, but aftercare, which in some cases might be the most important part.

I am also interested in recurrence. Having a mamogram only is also my biggest fear--I read this cancer is hard to detect with a mamogram until it larger. Have you been given the Oncotype DX test? I am 66yo. had a suspecious area on my right breast in July 2022. Left breast was fine. 8/23/2022 I had an ultrasound and they could see nothing so they ordered a MRI. I am highly clostrophbic and put off the MRI until 5/2023. The MRI with and without contrast showed an area calcifications on the right breast but also showed an enhancing 5 mm mass on my left breast. June 12, 2023 I had a contrast enhanced mamogram and ultrasound which showed a 6mm enhancing mass on the left breast. On 7/10 I had a MRI guided biopsy which which ultimately led to a diagnosis of Invasive Lobular carcenoma, Nottingham grade 1-2 and ER/PR 100% positive and HER ngative. I had a lumpectomy on 8/21. Two lymph nodes were negative and my tumor margins were clear. If I remember correctly, my surgeon told me I would most likely have a mamogram in 6 months and than yearly. At the time that frightened me because I read my cancer isn't detected with a mamogram until it is larger. I see the radiologist for the first time tomorrow and the oncologist on Wednesday. I found out about the Oncotype DX test on this site so I asked the nurse that the encotype DX test be preformed weeks ago. She said something to the effect that my tumor was too small for the test. What does the size have to do with it? It is used to tell me my chances of reoccurance which mentally is helpful. So, she called about a week ago and asked if I would be interested in participating in a study (my surgeon had mentioned it to me saying the radiologist may ask me about it). Before I can participate I have to have the Encotype DX test and I have a score of less than 18--not sure what it means. Funny that now it is not too small!! I am considering the study since I can quit it at any time. The study involves patients 50-70 having no radiation for ILC patients with small tumors. You are required to take the hormone blockers for 5 years. It is phase 2 of the study. I believe they already finished patients 70 and above. My mother had 1 breast removed at 73 and the other at 77. she is now 84 and cancer free. She did not take the recommended 5 years of Tomoxifen due to the side effects. On 1/21 i was diagnosed with Ocular Malignant Melanoma. A very rare tumor behind my left eye. I had brachetherapy and am cancer free. This cancer has a high rate of metastasizing so there is a molecular genetic test that was given to me as part of a study. You get a score of a 1 or a 2. Luckily I was a 1a!!! I have a very low chance of it spreading. If it had been a 2 I would have a 70% chance of it spreading ot my liver or lungs. My testing would have been more frequent and my stress level would have been very high. That is why I want the test for this cancer. If it is high I will consider different treatment. I am sorry this is so long and i wish the best for everyone on this site.