Invasive lobular carcinoma
I am new to the forum, felt I needed some support to go through this whole process of my diagnosis. I am 73 years old, biopsy report invasive carcinoma, 7mm, her2 negative, ESTROGEN/PROGESTERONE POSITIVE GREATER THAN 90%.. appointment with surgeon 1/6 hopefully have surgery date set up. Due to the nature of this disease I had an MRI with/without contrast did not show any other disease in that breast or my other breast. Total area was measured at 1.1 cm. I have been always up-to-date with all of my mammograms, ultrasounds etc. November 2024, they found a focal assemetry on the diagnostic mammogram that was’ probably benign’ six months later follow up ‘stable,’ November 2025 ‘suspicious’ and biopsy was done. Hindsight, I wish I had not accepted a probably benign and had a biopsy when first seen…I know they were following protocol but I did fall into that 2% or less where it is a malignancy. Really upset about that. just so overwhelmed at this point in time, don’t really want to do any of this but I know I have to…Just so worried, it has taken forever to get this process going especially with the holidays. The waiting is awful, I have researched way too much online and just fuels my already existing anxiety that I have. I am hoping to do a lumpectomy and the hormone blocker drugs. Not sure if that is the right decision at this point and I have no idea how the hormone drugs will affect me, really concerned about that also. So any insight, comments advice is more than welcome at this point. I just feel I need extra support to help me get through this process. I know breast cancer is treatable, but it just seems like so many of them do come back. I know with this particular type of cancer, long-term it may reappear… once I have the final pathology report I am going to be going to Sloan Memorial Kettering Cancer Center which is about a 2 hour drive from my place in Albany New York. . I have already set up and sent all of my information to them thus far. I definitely want second opinions going forward as I feel I was slighted through this whole process and this diagnosis. Thank you all!
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Hi @marleysmom -
Sorry that you have to join us, but very glad that you have found us.
Take a deep breath. You WILL get through this. I'm sorry that your correct dx was delayed. I went through something similar with my 2nd dx. It is very frustrating when that happens. However, know that b.c. usually grows very slowly and it sounds like it has been still caught very early for you.
The waiting is one of the hardest things about this journey. It sounds like you only have a couple more days to at least get your chat with the surgeon. Write down all of your questions and bring them along, so that you don't forget to ask them. Some people bring someone with them to be another set of 'ears'.
B.C. does come back sometimes. I don't know if it is often or not, but for me it took 19 years and then it was actually a new b.c., not one that "came back". Try and take things one step at a time.
Take Care.
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thank you💕
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Hi @marleysmom , and welcome to Breastcancer.org. We’re really glad you found this community. Many members here understand well what you’re experiencing, including the waiting, the uncertainty, and questions about treatment choices. You might also find extra support and real-time connection in our virtual support groups, where people share experiences, ask questions, and support one another as they navigate surgery, hormone therapy, and beyond. There are different days and groups; please feel free to ask if you have questions.
Take things one step at a time, write down your questions for your surgeon, and remember that this community is here for you whenever you need to reach out.
Best,
The Mods
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Thank you!
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@marleysmom I am thinking of you today. I am a fellow ILC patient and absolutely understand the agony of uncertainty and ugh, the waiting. Researching was a way to help me cope, but I found that can be a double edged sword. Online information can be so general and much of it is scary. Your case is unique, not everything you read out there applies to you. Wishing you the best as you start this journey. You are not alone.
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THANK U! I don’t even remember everything I commented on with my first post… I did get to meet with the breast surgeon on 1/6 I felt very comfortable with her…My girlfriend, who was diagnosed with invasive ductal carcinoma three years ago at age 76 recommended this particular surgeon. Also going to the same radiologist and oncologist that she had used. My surgery date for a lumpectomy will be January 29 thank God! I had to do a breast MRI with contrast and thank God nothing further was found for either breast. Things are starting to move now, the thought of this breast cancer lingering in my breast is absolutely driving me crazy! I know it probably won’t change the outcome but this wait has just allowed me to research everything and anything and has increased my anxiety so much. Glad things are starting to come together. I will meet with my surgeon a week after the surgery hopefully the pathology report will be in.. Surgeon said she will do it as a lumpectomy with MAC which I am thankful for since I have never had general anesthesia. The initial biopsy had the longest section at 7 mm and the MRI 1.1 cm however that was right after the biopsy that area might include some swelling, blood etc. I’m hoping that it is less than that but we will see. I most likely will do radiation as a preventative course of treatment, especially since I do not know how I will fare with these hormone blocking drugs. I keep reading on this website all the comments about them and I have not heard anything good about any of them really. Can I just ask how you are doing and feeling now?. Also, if you are taking any of the hormone blocking drugs and if so how are you doing on those and any recommendations. At my age, I do want to have quality of life as I fortunately have had no other health issues thus far…But, I am petrified not to at least try the hormone blocking drugs and pray that I do not have severe side effects. All I know is this diagnosis has for two months now controlled my life, made me very depressed and unfortunately I have withdrawn from my friends and family. Hoping, I get good news going forward and I can move forward with everything. Have an appointment to go to Sloan Kettering on February 24 and going to get second opinion with medical oncologist and radiologist also. I still anticipate doing any imaging there as I know they have the most up-to-date equipment and the best doctors. Thank you so much for responding, I appreciate your thoughtfulness. Joanne
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Hey @marleysmom, how are you doing? Thinking of you and sending good wishes your way. By now I hope you have a few answers and feel marginally less stressed. For me, the worrying was the worst part. I worried myself into a 15,000 WBC count, and later found that the things I most worried about never materialized. It is the unknown, not knowing what to expect that is the thing that will keep you up at night. February 24 is right around the corner. Hang in there, things move fast once you get started.
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Hi, thanks for checking in again. Haven’t been on this website since I last saw your initial post. I did have my lumpectomy on February 6, everything went really well. The tumor was located close to my chest wall interior at posterior depth but my surgeon got excellent margins. I had joked with her prior to the surgery and told her to take as much tissue as she wanted and she indeed did! So happy about that. The final pathology report had the tumor at 1.4 cm, the bulk of it was as the MRI had showed at 1.1 cm but when the pathologist looked at the next slide, the “tentacles “ did go into that slide a little bit so it ended up being the 1.4 cm. No lymphatic or vascular invasion, lymph nodes were not tested due to clinically benign on ultrasound and MRI. I ended up doing a telehealth call with both the oncologist and the radiologist at Sloan, due to the fact that they had received a lot of snow and driving was not good. It actually worked out better that way because with traffic it probably would’ve been a minimum of 2 1/2 hours to three hours as it is close to New York City. Although on the outskirts. I was initially thinking of doing radiation at Sloan, five day hyper fractionated course but due to logistics and travel time I decided to not have that done at Sloan… I felt that they might do a more concise job but just trying to negotiate travel for a five day period was too stressful for me. So I’m going to do the mapping on March 12 locally, I do feel that the radiologist locally would also do a good job. Sloan was considering doing the radiation on my back and stated if that was not good it would be prone… just kind of felt that Sloan was putting a little more thought into everything and how to protect my heart and lungs… The radiologist locally had said that he would probably do it in the prone position. I just want to make sure that my heart and lungs are protected either way. Everything is just so scary, I feel like I’m damned if I do and damned if I don’t for every decision I’m going to make going forward. The oncologist I met I really liked very informative very empathetic and was willing to work with me in anyway she could. She felt that with my ER/PR positivity and everything else with tumor size etc. I would do really well with the aromatase inhibitors. I did tell her along with my local oncologist that I am definitely on the fence about taking them. I am 73 years old and would like to have quality of life and I worry so much about all the side effects. I did get my oncotype score back and that was 4, so I was happy to hear about that. I feel that I have been so stressed on waiting for pathology reports from the biopsy and then the surgery, the HER2 report and now have to make a decision going forward with ET tx. I am feeling now that since the bulk of everything has been done that my real worry will start. Any thoughts on taking the drugs? My mind has just been consumed with this diagnosis since the day before Thanksgiving when I was told I needed a biopsy. All I do is research and then research some more. Literally driving myself crazy. I guess I will make a decision as to my risk with and without the ET and will have to be comfortable with my decision. It’s awful. The more I read about everything the more stressful it is for me. As with everyone, life has changed dramatically and can’t wait until I feel less stressed… I have anxiety already and I just know that I will always be stressed. Any recommendations would be greatly appreciated! Thanks again for checking in! Hope you are doing well!
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Hi @marleysmom
Congratulations on getting through your lumpectomy! Also, GREAT oncotype score! It sounds like you have an excellent prognosis. All the decision making that goes along with this dx is certainly stressful. My recommendation is always to folllow your gut, make the decision and move on. Once the decision is made, it is the RIGHT decision for you. Regarding AIs, you can always try it out and if it doesn't go well, you can discontinue them. Some people do really well. Others struggle.
Best of luck to you as you make your decisions.
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Hello @marleysmom What a time to be traveling roads near the great lakes. I share your concerns and worried about winter travel also (being near Lake Michigan). It's good to practice some self preservation, thinking things through. I understand and feel some apprehension about endocrine therapy. Have you made a final decision yet?
Fabulous news on the Oncotype score! You don't need chemo. Yay!
I have been offered endocrine therapy and am encouraged to also take Kisqali for prevention of relapse. I am nervous about it and really don't look forward to the arms-long list of side effects. Though I have decided to go ahead, I already feel the ongoing effects of brain fog and worry about it worsening on the treatments. That said, I trust my doctors advice and feel like if it gets too bad, there will be a work-around
I am thinking of you and send warm hugs and best wishes for your recovery. You are not alone.
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Hi, thank you for checking in once again! I am 99% sure that I am not going to take an aromatase inhibitor. I have been plagued with sleepless nights, so much anxiety trying to make a decision about this. I am 73 years old, and pretty good health overall. I do have cervical spondylosis with radiculopathy, so taking ET tx, , makes me very anxious I already am dealing with that pain which I’m able to control pretty much with Motrin and PT. Although I do not know of any serious cardiac issues or concerns, just being my age I suspect that over the years there has been some changes going on, I do have high cholesterol taking Lipitor, I do not have high blood pressure but I have benign hypertension which only kicks in when I have doctors appt (a lot lately) white coat syndrome I guess. Not treated for that just yet. I really worry about cardiac issues, I hear it can cause tachycardia, a fib, high cholesterol, high blood pressure and I do think any one of those things, would just make me stop taking the pill. Then ther is bone thinning…When I spoke with the oncologist at Sloan, taking everything into consideration she plugged in my numbers and she said that I had a 5% chance of a reoccurrence in 10 years, that would be without taking hormone therapy. With hormone therapy that would be reduced accordingly. According to the new predict model, my overall survival is pretty much unchanged for the first five years, with /without ET and a difference of one % 10 years and 2 % at 15 years. all of the doctors so far say that I can at least try the treatment and if I have side effects I can stop. I just don’t even know if I want to do that because I know myself and I will not continue with any one of those side effects. At this point, I really do want quality of life but I don’t know if I could put it to rest no matter what my decision is. So I have to give it some more thought and when I do decide I have to just let it go and live my life. I never really thought too much about breast cancer, I have always had benign issues in my other breast but what an awakening this has been! No family history of cancer either side. Just curious, which one of the therapies did you decide to try? I do know that if I have a distant reoccurrence I would be taking that treatment along with a few others…Please keep me updated on how you are doing on your treatments, thank you so much for reaching out once again!💕
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