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

Hello @lhwoz I had invasive DCIS, which I know is different than ILC, but my oncoscore was 25. I was 54 at the time of diagnosis. With an oncoscore, as with many other types of test scores, there’s usually a range that the actual score might be. My score was 25, but it actually could have been as low as 22 or as high as 28. I don’t remember the standard error of measurement, but my point is, my score might have been higher than what was actually reported. I was 54 at the time deciding whether I should get chemo. My cancer was stage 1 with no lymph node involvement and genetic testing was negative for all cancers tested. My medical oncologist said had I been 50, chemo would definitely be recommended. She also said since I’m 54 and with an oncoscore that might actually be higher than 25, that she recommended chemo. I had 4 rounds of chemo, which I’m glad I did even though it was a scary decision to make, which I don’t regret. It gave me peace of mind knowing I did everything possible to reduce my chances of any cancer remaining. I know this is my story with a different cancer, but that was the decision I made. I hope this gives you a little more information to help you with making a decision whether to have chemo. I wish you well and all the best 💗

Hello @timely - honestly, I would push for the MRI. You can always get a second opinion, as well. Reading your post, it doesn’t seem like you are comfortable with the recommendations given by your radiation oncologist, so I’d advocate to have the MRI. There’s a reason why you feel the way you do, so go with your gut and push for the MRI. I wish you all the best!

"When people ask about MRI and radiation, they typically want to know if MRI produces radiation in the same way that X-ray imaging or CT scans produce radiation. Unlike X-rays and computed topography, MRI scans do not expose the patient to ionizing radiation." “There are no known harmful side-effects associated with temporary exposure to the strong magnetic field used by MRI scanners.”

Thank you so much for your reply. I hate being in the grey area (at least in my mind it's a grey area). I will see what my Med Onc says today and go from there ❤️

Please let us know what the Med Onc recommends.

I have just last week had my diagnosis of stage 2 invasive lobular Cancer. Measuring 6mm on MRI. ER positive, Herceptin negative. Ultra sound not detecting a spread to the lymph nodes. I am still waiting for an appointment for MRI and to see the surgeon. As I have transferred my care to closer to home, and a place and people I trust and have worked with before. They have recommended breast conserving surgery followed by radiotherapy, with no chemo.
I am told that as long as the MRI confirms the size and it isn’t anywhere else (being that lobular cancers does not always form in lumps and can hide very well in a monogram)
I am reading that a lot of women have a mastectomy at stage 1, or that within a few years go on to have a mastectomy if having an earlier lumpectomy.
I feel
I have been left wondering scared and without a plan. The way they discussed it with me was that it is good news, easily treated with will have a positive outcome. My head is spinning and I feel like I am a fraud for having a good news (if there is such a thing) regarding the Cancer I have. It has been minimalised by the consultant parting the result to me. He literally told me how lucky I am!
Well I don’t feel lucky, I am terrified, trying to keep it together because my family are in so much emotional distress. I have to be strong for them, and feel that I can not break. I was so relieved to find this group. As I am at the start of my journey.
Any advice you can give me will be appreciated.

Your case is very much like mine. They will likely take out a couple of lymph nodes when the cancer is removed to make sure there is no cancer spread. You will have some exercises to do daily for a few weeks. Depending on how much radiation you have, there will be recovery from that. I consider myself fortunate not to have needed a full mastectomy or chemo. Just having the cancer diagnosis and going through treatment is a life changing experience but it helps to educate yourself so you are more comfortable making decisions for yourself. This blog is a great place to get additional information. We are all supporting each other!

My ILC has the same size, 6mm. I will have Lumpectomy, not mastectomy, possibly radiation and aromatase inhibitors for about 7 years. I feel sort of lucky:) It diagnosed early, hopefully did not spread to lymph nodes, it is treatable with a small surgery. My stress level came down after I talked with a team of doctors and read about this stage of cancer. I am optimistic about the treatment outcome.

We sure go on a roller coaster trip when we get our diagnosis! No matter what the size of our tumor or what our treatment, we are scared, feel blessed, feel cursed or somewhere inbetween. During my initial testing, I felt blessed. Small nodes were found in my lung, a renal aneurysm and spots on my liver. Never would have known any of that until the aneurysm broke! The nodes appear from old diseases, the aneurysm was causing no problem at the time. I chose to finish my breast cancer treatment for stage 2 ILC (HER 2+). That included Chemo, mastectomy, radiation and more chemo. I'm waiting for my exchange. I recently had the aneurism dealt with. The liver seems to be fine as well. This has been close to a two year journey. I'm very happy that it is coming to an end. It hasn't been easy, but it hasn't been awful either. I look on the bright side and try to stay in the moment. I wish you the best on your journey.

Thanks so much for your reply.
So sorry for the loss of your mother...what an awful time to add a lump to the mix.
Like you I didn't want to add to my daughter's already heavy load with her husband, and I thought, at 71, and living a life that hasn't afforded me much.. except, of course, I am grateful for my children and grandchildren, but I never had means to do much to make their lives easier so, I just ignored it for a few months, until my daughter saw I had dimpling and I had to admit I had a lump.
Well, you know what comes next...I had a lumpectomy this past Monday..but I don't have word on lymph nodes yet.
I am a wreck. I won't do Chemotherapy but I guess I would do radiation, if necessary.
Can you tell me what your journey has been like so far?
Thank you so much for replying./ Lois