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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Thanks for updating us @marleysmom! We know the decision to take hormonal therapy is tough. Here's some information that you might find helpful:
We hope this helps!
—The Mods
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Hey @Marleysmom. It's been awhile. I hope all is well with you and you found some peace with your decisions. I decided to go ahead with the AI and Kisqali. Now in my second of 36 cycles and doing okay. None of the scary side effects have surfaced and have fingers firmly crossed. Struggling now with the worry about recurrence. I have to make a conscious decision every day to trust I am on the right medical path and not let anxiety rule the day. I am a work in progress.
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HI, glad to hear from you again! I have decided not to take the aromatase inhibitors, taking into consideration my age 73, I have moderate to severe cervical radiculopathy and osteoarthritis in my lower spine. able to manage this ok for now… I really wanted to be able to at least try the aromatase inhibitors but I know myself and I know I would not continue with them. I have anxiety and thought of having even one of those symptoms would drive me to stop taking them. I can’t say that I am at peace with my decision because the future is so unknown. I have read so many stories of people struggling with these drugs and I have read and researched everything there is about invasive lobular carcinoma..I’ve been doing this for the last five months since my diagnosis and I need to put everything to rest at this point. I’m going to be super proactive with follow up scans. I plan to go to Sloan for a CEM mammography this coming October followed by a breast MRI once a year with contrast that I will do locally. I am considering doing an FESPET scan at some point although my former oncologist told me they do not do those unless you are metastatic. My OPINION is that if you are going to have something why not catch it early before it spreads to other places but that apparently is not the protocol. By the way, after my second visit with my oncologist I told her I was not going to do the ET and she told me that there was no need for me to go back to see her that was very unethical at the very least. My second opinion Sloan oncologist agreed with me… I will be followed closely by my oncology radiologist and my surgical oncologist. So, no real peace with my decision but I do know that I would worry over each and every possible side effect along with worrying about reoccurrence even if I did take the ET… Not quite sure how I am going to move forward with this decision unless I stay connected with others that I’ve done the same. I am happy that you made a decision to at least try the medication‘s and hopefully side effects will be minimal for you. I do think that is probably the best route to go if you are able to tolerate them and the horrific side effects. Please keep me updated on your progress and I will do the same. Thank you for reaching out to me early on, I really appreciate it! Hopefully we all enjoy a nice summer! Oh, I am also a work in process and suspect that will always be the case. It’s awful when the calm and your norm that you once had, have been taken away from you. 💕
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Hello again MarlyesMom, I completely agree with your comment about catching any recurrence early, but it seems the oncologists don't agree. Something about scans and catching relapse early not improving survival numbers. Ick, I say! Why the focus on statistics and numbers when we the patients are thinking about peace of mind and quality of life?
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Yes, you are so right!! They are so focused on protocol, relative risk, not absolute risk, not the things that to us like peace of mind and quality of life that matter also… my surgeon, did a great job overall with my lumpectomy and she got really great margins. I really appreciated that. However, when I did mention that I was not going to take the aromatase inhibitor she said, that’s fine that my survival is the same with or without them at 10 years. That did not give me a warm fuzzy feeling as that does not include reoccurrences. I’m tired of trying to figure out the medical jargon, I feel like sometimes they are just not being upfront and honest.Please feel free if you ever want to email privately.
(Edited by moderators to remove email address. Please do not share personal contact details in public posts for your privacy and safety.)
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@marleysmom I was 62 at diagnosis, IDC in one breast and ILC in the other…had BMX with immediate DIEP recon June 2020. Oncotype 6 on IDC side and 11 on ILC side. ER+/PR+ HER2- No chemo, no rads. 3 months anastrazole prior to my surgery which was delayed due to COVID. Had terrible side effects. The MO said I had 3% risk of distant mets with the pills and 6% without so I made decision not to take them after surgery. So far it's been 6 years and everything seems ok but I guess time will tell.
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Thank u Abigailj, although we never know when we make our decisions with 100% certainty, I appreciate you reaching out to me. Definitely made me feel better!
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Hello marleysmom:
Thanks for sharing your situation! I'm in a fairly similar space in terms of my thinking about how to proceed with this dx. I'm 71 and was just recently diagnosed with invasive lobular cancer, grade 1, ER+, PR-. I had a previous lumpectomy in 2018 for invasive tubular cancer, a rare and very non-aggressive subtype. Although estrogen blocking meds were recommended at that time, I declined due to the side effects I knew I couldn't tolerate, and based on the research I conducted (which was more than the doctors had), felt unnecessary (and was willing to risk being wrong). This ILC diagnosis is more complex, since it's more difficult to detect, the fact that it's PR- could factor in, and I think there's lymph involvement. I'll be getting an MRI with contrast next week to get more information, and probably an ultrasound after that to also determine possible lymph involvement. Despite not knowing the extent of the cancer at this point, I've already decided that I can't tolerate hormone blockers (which might not be as effective anyway with the PR- status), nor can I deal with radiation or a mastectomy. I'm in the process of researching the growth rates of the cancer and treatment in women over 70, as well as what appears to be the relatively minimal benefit of treatment in terms of survival rates. I will share any helpful information I come across. Thanks again!
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HI Benaya, sorry for the delayed response I just happened to log back in I haven’t been on for a little bit. I’m so sorry to hear that you are dealing with breast cancer once again. I have continued to research extensively in reference to invasive lobular carcinoma since I last posted, but I’ve told myself I need to stop doing that…My gut feeling is that although research shows the benefits of whatever treatment they are recommending it’s a hard pill (literally) to swallow and I need to value my quality of life in addition to being proactive in my surveillance for any reoccurrences. There is a website called LOBULAR BREAST CANCER ALLIANCE, NOT SURE IF YOU HAVE HEARD OF THAT BUT THEY ALSO HAVE A WEALTH OF INFORMATION AND HAVE INITIATED ALL KINDS OF FUNDING FOR SPECIFIC RESEARCH ON LOBULAR BREAST CANCER ONLY. THERE ARE SOME REALLY GREAT PODCASTS FROM A LOT OF THE SURVIVORS OF THIS TYPE OF BREAST CANCER AND INFORMATIONAL FORUMS ETC. If you have not already found this website I think you will find it very helpful. Please let me know any information that may be of help that you may encounter…life is all about choices. Wish there was a way for us to chat privately… I did join a group it’s called TOLIFE, locally in Albany, New York and they have connected me with a mentor, which is a woman who is 75 years old and diagnosed with invasive lobular carcinoma along with DCIS in the other breast. She did end up having a bi-lateral mastectomy. All of our concerns are the same, our journeys are very similar and I am grateful that she and I have connected and going forward hopefully will become and remain good friends. I wish the best for you, I will check in more often on this website. I feel like my journey has just begun for all my follow up visits. I’m scheduled to have a CEM mammography this October at MSK in Westchester County New York. It will be followed by an MRI with contrast six months later I will do that locally as Msk is 2 1/2 hours away from my house but will request that they review the MRI imaging. There is no place locally that does the CEM mammography currently in my area so I will travel once a year to have that done.So that will be every six months alternating tests for probably up to 10 years is what I am told, as we know ILC is so sneaky. I’m still reeling from the fact that I haven’t diagnosed with breast cancer and one that has not been well studied ! Definitely has put my life in perspective more so and how I will hope to live my life going forward. I’m hoping in time, this fear subsides. I would have the fear even if I did take the aromatase inhibitor, I was told my risk of reoccurrence increased by 2 to 3% absolute if I did not take them, Which means instead of 95% possibility of never getting cancer it will be 92 to 93% instead. ILC tends to be very slow growing for the most part so that is a positive I guess. Although it does tend to reoccur years down the line, again never imagined any of this happening…Fingers crossed, we both can move forward and have some semblance of peace and quality of life! When I go to Msk this October it will be the first time that I am meeting also with a medical oncologist there, I have spoken with her twice via Telehealth, since my diagnosis. Health insurance will normally pay for second opinions and treatment going forward. I might have noted previously that my medical oncologist locally decided not to continue to see as I was not going to take the ET but the oncologist from Msk said she would be happy to follow me. So I feel better about that. I will see her yearly when I do the CEM mammographies and then do a couple of follow up telehealth calls with her. My surgical oncologist will be following me for breast exams twice a year along with my radiologist who will do that once a year.
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Hi marleysmom:
I don't check this site frequently either, so don't worry about not getting back to me earlier. I am familiar with the Lobular Breast Cancer Alliance and like you, spend much of my time researching. There are also some Facebook groups specific to lobular, that I check out frequently. I'm still in the imaging stage. I never heard of CEM mammography prior to your mentioning it, and in researching it, sound like it doesn't differ much from breast MRI's with contrast, except more comfortable? Are there other benefits? Had the breast MRI with contrast about 1 1/2 weeks ago & it wasn't good: 24mm mass with additional non-mass enhancement, for which surgeon recommended biopsy (haven't gotten it yet). With the non-mass enhancement, a lumpectomy may not be possible —was told I can't have two—one of the palpable & one non-palpable area, in same breast. Also, multiple asymmetrically prominent lymph nodes, for which I'll be getting an ultrasound—but refuse to remove them due to the fear of lymphedema, which I can't deal with. I have an appointment with a surgical oncologist Thursday, and will get more information about imaging that's already been done and recommendations for further imaging, etc. I'm pretty convinced it's in the lymph (independent of what MRI showed), because area is very sore, as is the palpable mass which is what alerted me to have it examined (had mammo 6 mos. before which was supposedly normal). I am also fatigued. Regarding the AI's, etc., the more I read about the effects (in the forums) the more I know I will never take them. Doubt that I'd ever do radiation either since, as you know, the drugs, radiation, etc., only prolong life minimally and don't have a desire to trade quality of life for minimal life extension. So, I'm kind of preparing myself for the worst at this point, despite lobular being slow growing (my mass is growing) where the only thing I may be able to do is focus on minimizing probable increasing pain in the time I have left.
I'm so glad they got clear margins with your lumpectomy and that there's no lymph node involvement (like my tubular cancer years ago but has very different characteristics, prognosis, etc.). Good to hear you'll be meeting with an oncologist who will be following you. Your prognosis sounds pretty good, so I hope it will be easier for you to "move" forward with a little less worry and anxiety. It's a lot to deal with!!0 -
Hello all,
I was diagnosed with ILC, had a lumpectomy in February and then needed a reexcision procedure since my surgeon found something suspicious near the margin but the pathology report found it was benign. I finished 19 rounds of radiation at the end of March and then started taking Anastrozole. I can honestly say, for me, the side effects have been minimal so far. Just an occasional “mini” hot flash and sometimes a little fatigue. I’m 74 years old, in good general health otherwise, and am taking this diagnosis and treatment one day at a time.
My medical oncologist and surgeon are both 40 something women and very easy to talk with. The only issue I experienced recently was tightness on my left side where the surgery/ radiation was. I noticed it in a weekly yoga class I go to which is a class just for cancer patients. I’ve had two sessions with a PT who specializes in breast cancer patients and she recommended a few stretching exercises that I try to do every day. She told me that the tightness can be a common side effects have of radiation and it should be addressed fairly quickly to loosen up the scar tissue. I don’t have lymphodema and no lymph nodes were removed.
I was definitely nervous about starting the medication and have a friend who had serious side effects. My oncologist told me that in my case there could be a 10% chance of recurrence and that the medication reduces that to 5%.
Good wishes and healing prayers for all of you with this scary diagnosis.
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Hi Beneya, hope all is ok with your upcoming biopsy and surgery, this process for everyone is so stressful, mind-boggling and gets very depressing at times. Wish there was a quick fix to all of this but there is not. I guess the best we can do is try to be positive, which honestly I have a hard time doing and take one day at a time. CEM mammography I believe has been around for a little bit of time it is not offered locally where I live in Albany NY…I had read about it previously and knew that they do offer it at MSK in Westchester County New York. My surgical oncologist actually recommended that and said she had quite a few women that went down there for this screening test. So my appointment to have that done will be October 20 at MSK. it is a mammogram that is done I believe they use iodine as contrast which apparently will light up any estrogen positive areas in the breast. It’s a much quicker test, and will be read immediately… I will meet with my oncologist there at Sloan right after they do the testing. I will have MRI with contrast and CEM mammography alternating every six months. I know the MRI uses a different contrast agent, but I think they are both 95 to 98% effective in detecting estrogen positive breast cancer.I don’t know if insurance (Medicare) with a secondary will cover two MRIs a year. But they will cover this regiment. I will do the MRI with contrast locally here in Albany New York but I will have the images sent to Msk for a second review. Kind of wish I had done that initially when they first found my focal asymmetry that they were “following” for a year. Might have been caught even sooner. Ugh… please let me know how you make out with everything, wishing you the best…💕
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Hi Libraryloves, I’m glad to hear that you are able to take anastrozole without side effects. That is always good to hear, it does make taking the medication at least mentally and of course physically a lot easier when you are not suffering side effects. I do believe ET is the best that they have to offer to prevent reoccurrences for estrogen positive breast cancers. At 73, I am in pretty good health although I do have cervical spondylosis with radiculopathy, and lumbar stenosis with a prIor herniation to my L5 S1. I do have carpal tunnel that I should’ve probably treated 20 years ago but did not so that lingers. Also had my DEXA scan which is now showing osteopenia in both of my hips. However, I feel pretty good in spite of all that I’m just afraid that that would get worse for me…Some days I tell myself I should at least try them and see how it goes but I know myself and I know that one little thing that goes wrong I will stop taking them. I guess my anxiety does not help. Anyways, hoping for the best for everyone, it’s definitely a journey none of us ever thought we would be on. Definitely consuming and life-changing for sure!
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Hey Marleysmom, I would love to connect via private email or phone. Not sure how to do that as it seems the moderator removed your contact information (for your protection).
I continue on my journey just now finishing up cycle 4 on Kisqali and AI with no real side effects, only a few annoyances I refer to as background noise. I hope you are enjoying your summer and have found at least some peace with the process. Looking forward to chatting soon.
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Right, hard to connect, other than as we are… I did join a group that is called ToLIFE, locally, seems like a great organization. They provide so much for breast cancer patients. I am not so much interested in all of the activities or the group chats etc. but they did connect me with a mentor which has turned out great! She is close to my age, 75 and also was diagnosed with invasive lobular carcinoma. Seems like we connected right away and have already met for lunch twice. She is four years cancer free did have a bilateral mastectomy, as DCS was first found and she had a lumpectomy and upon final pathology report she also had ILC…Her lobular cancer was small 8 mm. As with all forums, it is so nice to connect with other people, I find it such a difference now in how I connect with my friends. It is just so much easier to talk with someone who also has breast cancer and to put it simply, “they get it” Looking forward to a continued, long friendship with her. I am glad you are doing well with your treatments, that is fantastic news!! let’s keep in touch on this forum, I appreciate your thoughts and advice. It just seems like when all the treatments have ended, I am now in the realm of “uncertainty” and finding that so hard to deal with. Being five months out from surgery and two months out from radiation I guess I need more time behind me to probably be less worried. Scheduled for my CEM mammography at Msk October 20 to be followed in six months with a MRI with contrast. Probably for 10 years yikes! I also read a couple of short articles that were mentioning how ILC is being diagnosed more now than other types of breast cancer. Definitely an uptick with the numbers…LBCA has been a great source of information, so glad lobular cancers are being studied as a subset of breast cancer and hopefully imaging recommendations will be different going forward along with treatments that are focused specifically on this type of cancer. Enjoy your summer, I will periodically check the website and hope to continue chatting with you!!
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Hi @unflintching and @marleysmom! We just wanted to step in briefly to help with connecting.
For privacy and safety reasons, we remove personal contact details from posts, but you can still connect with each other directly here on the forum through private messages.
If you click on a member’s username, you will see an option that says “Message”. You can use this to send a private message and continue your conversation off the public thread.
We hope this helps, and we’re super glad to see these supportive connections forming here in the community.
The Mods
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Thank You!
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Hey marleysmom. Glad to hear you have found some kindred spirits in your area. There is nothing like a good chat with someone who "gets it". Shared experience can be so valuable. Enjoy the holiday weekend.
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