I have been talking with my former oncologist in California since my diagnosis. Today he sent a message that said, I hope your new regimen works. Lobular carcinoma can behave very strangely.
Mmm thanks, I needed that. Any other lobular carcinoma ladies in here? I’d like to follow your journeys.
Oh brother...hope you replied with, "and some oncologists behave very strangely!" I was diagnosed with invasive stage IV lobular carcinoma in Oct 2017. You can see my Abraxane post from earlier today for more details. Mine has actually been pretty predictable, except that it didn't respond to Ibrance. The cancers are all so different and we are each so different....try not to worry too much about one odd comment.
Thanks. I visited your page and even signed up for that conference that was over a few days ago! They let me, do I’m hoping it’s available online.
My lobular cancer is behaving strangely, actually. I will be glad when my real oncologist gets back from maternity leave!
I was dx with stage 3a invasive lobular in Sep '16. I had a bilateral mastectomy, lymph nodes excision, 20 weeks of chemo, 6 weeks of radiation, and a breast reconstruction followed with a couple years of Tamoxifen which we eventually switched to Letrozole.
Pretty sure my abdominal mets was there at initial diagnoses and that I was MBC from the start. He described abdominosarcoma as a "cold cancer" as it isn't picked up on scans. He said it's like specs of sand floating around in my abdomen.
I stared Ibrance 125 and Faslodex in early march. I feel about 90% better. I still have flare ups of abdominal pain (which they'd been attributing to crohns disease for 2 years) but they are so much more tolerable now. And I'd reduced my diet to almost nothing trying to control the "crohns". My quality of life since diagnosis (other than getting used to having MBC) has increased greatly. I'm able to eat what I want again and not fear my almost twice weekly small bowel obstructions my abdominal mets was causing.
I left my original practice at this diagnosis. I'd lost all faith in them. They have a revolving door of oncologists and I never truly felt heard there. When my current onco told me flatly that I should get my affairs in order at my first appointment, I never went back. I'm so happy with my new team in Boston. My husband and I left there with hope which was all we needed to move forward.
And this forum gives me hope. I stayed away from all things Google and WebMD after this diagnosis. Really just stuck my head in the sand. Hearing your stories and following your journeys makes me feel like I'm not so all alone in this. Good luck ❤️
AMEN!
Oh , an oncologist said that to you? That’s awful. The one hopeful thing I have heard is that lobular cancer is slow growing, which is good since it’s so darn hard to find. How did they find those grains of sand? I am so glad you are feeling better.
I finally had an exploratory laparoscopy after two failed colonoscopies and a failed capsule endoscopy. It was quite obvious to the colorectal surgeon the minute he took a peek in there. They sent fluid to pathology during the surgery to confirm my cancer diagnosis. It was quite devastating as we were all so sure I was there to confirm my crohns diagnosis so I could start on Humira.
I’m so sorry. But I’m hoping they came up with a good treatment for you.
Sharon
I don’t have lobular so nothing to say about that! But I am so glad you found a practice you are comfortable with. I have been lucky with my oncologist from the beginning, but have had friends who reported surgeons and family practitioners that they really didn’t like. They have the right to a second and even third opinion! I have only had one friend that had to be told not to seek out another doctor because she was hopping from one to another because they couldn’t cure her problem immediately. Hugs, Elaine
Thanks Elaine. ❤️
Hi Seekers— I have Lobular and have had ducal before. I’m not sure I know anything about the “Strange” behavior— but when I was diagnosed MBC after a clear mamo 6 months previous, my oncologist said lobular often is deep in the breast and very hard to detect. My oncologist said mine had probably been growing for 3 years before detected by a lump I felt. I’m on Ibrance and Aromasin, stable at 3 months of treatment.
My oncologist stressed to me over and over that lobular is concerning because it grows in rows of cells rather than clumps of cells, so it is hard to see in imaging except MRI, and you have to know something is there to do an MRI because they don’t do full body MRI’s. My original cancer was caught on mammo, but I’ve had this lump on my neck for two years and imaging keeps saying nothing there until I had an MRI. That found “wispy strands” and I recognized it as lobular from that description, confirmed by biopsy, still invisible in PET.
My lobular cancer has also mutated from being 99 percent ER positive to now only 2 percent ER positive after almost three years of estrogen starvation by anastrozole.
Sharon
Hi Seekers: I too have lobular invasive carcinoma. I had a mastectomy in 2014. NED afterwards. Then, upon a breast reconstruction in 2017, lobular invasive carcinoma was found in the mastectomy scar with surrounding skin metastases in the breast skin. Like you, none of this cancer is seen on any scans (i.e. mammo, Pet, and ultrasound), but it is still there. It only appears on a punch biopsy. I am glad for you that the MRI has been useful. Sounds like something that I should inquire with my oncologist. How small are the tumors that your MRI was able to detect? I am now hoping that an MRI may be a good tool to help me.
Thank you, Susan
I have a lump above my collarbone, about the size of a grape. It is apparently made up of fat with wispy strands of lobular carcinoma embedded in it. The wispy strands have also climbed up my neck to the base of my skull. I do recommend the MRI. The only problem is that you don’t know whether it is anywhere else! Was your original breast cancer lobular?
I have lobular in my stomach. It was found by a biopsy during an endoscopy last year in April. I’m having another tomorrow to see what’s happening in my stomach since it never shows on scans. No primary was ever found. Last scan showed something on my omentum. Next scan is next week.
I wish you good results!
Sharon
My gastro said today that my stomach was more red than previously and that there are some nodules that weren’t there before. He took 12 biopsies. We will see next week. Thank you.
Love and prayers for good results!!
XXOO Linda
Thank you so much.
I had invasive lobular "marshmallow" stage 3a in 2017-18 with lumpectomy and axillary node dissection. Had 5 months chemo and 6 weeks radiation. Then in 2019 I started having intermittent small bowel obstruction. Nothing showed up on multiple scans, blood tests, etc. Finally had surgery Jan 2020. Diagnosed with MBM (metastatic breast marshmallow). Started on Faslodex and Ibrance in Feb. Just had my first post-surgery scan. Shows nothing. I, too, believe I've had it maybe the whole time. It's a little scary having them tell you it's there but nothing shows by which to gauge efficacy of treatment. Sorta' like taking a walk in the woods blindfolded, and barefoot! (In case you missed my earlier post, the C word is so negative that i stole the pediatric oncologist's idea of calling it marshmallow.)
Ann
Exactly! How can you know if the treatment is working if you can’t see it on scans? I’m especially concerned because the biopsy concluded triple negative, but my temporary oncologist decided to treat it as ER positive at 2 percent, so I’m not 100 percent convinced this is the best treatment.
What is marshmallow by the way? Is that when the strands of cancer embed in a lump of fatty tissue? Because that is what I have,
Sharon
No, not a medical term but we watched a sweet movie on Netflix called The Healer. A young girl had cancer but her oncologist told her the C word had too many negative connotations, so he wad going to call it marshmallow. I like that idea!
Oooooh. That’s sweet. Literally!
Our stories are so similar. Also 3a in 2016/2017, same course of treatment except I opted for bilateral mastectomy with reconstruction. I'm quite sure mine was there the whole time as well. I started having intermittent small bowel obstructions before my original diagnosis. Since they went away when I was in treatment I didn't give them a second thought until they hit me like a ton of bricks about 6 months post chemo. They put me on high dose steroids for 6 months treating me for "crohns". Is your marshmallow in your abdomen? Mine is abdomino-marshmellow-oma. Sounds so much better that way 😄
Oh, I'm so sorry for your circuitous journey. I hope you aren't having the obstructions anymore-- those episodes were miserable! My dis-ease is simply metastatic breast marshmallow. I, too, had testing for Crohn's and many different scans and colonoscopy. Really frustrating, isn't it? But we are special! Only 1% of breast marshmallow patients! Glad to hear from you. I'm in Georgia, USA. Where are you?
Oooo, I do feel special now😀 I'm in Massachusetts. It was such a frustrating journey. My PCP thought I was crazy. Told me I had IBS related to stress. Every time I called with a new symptom I'm quite sure I could hear the eye-roll over the phone. Thank goodness I didn't give up!!
My marshmallow is on my neck, in a lump of fat, which is a good place for it to be, assuming that is the only place it is, since it didn’t show on the PET scan either.
Not very comforting to know that lobular doesn't show up on PET scans. The only scans I had post MBC diagnosis were a full body PET and a brain MRI. How the heck am I supposed to know that it's not gone to other areas in my body? Kind of discouraging. But I suppose the treatment would be the same, Ibrance and Faslodex, no matter what?
I wouldn’t say it never does. My original lobular cancer was diagnosed with a mammogram. This one has just not shown up on anything except MRI. And it is very disconcerting.
Yes, thank goodness! I spent a summer in Massachusetts in Cambridge working at Mt Auburn Hosp after my junior yr in college. I loved it there. My step-brother lived in Sherbrooke for a while. Many years ago!
I was diagnosed with Stage IV lobular carcinoma with mets to liver, bones and orbit of eyes. Started treatment with Taxol for 6 mos to hit the liver mets hard which was successful and now started my 3rd month of Letrozole and Ibrance 125mg. Hopefully that’s working but I feel so much better. My vision bothers me most of all and I hope it gets better with treatment. It’s mostly a problem with double vision when looking hard to the left. I know this diagnosis is one that has to be monitored closely so it can be treated if the current treatment stops working. It sucks but my oncologist said “it’s not curable yet but it’s treatable.” You’re not alone.
I have invasive lobular that has metastasized to my bones...
WOW! Do you think he might have enlightened you further? This is a classic example of why all MD programs should include more coursework on HUMANISTIC DOCTORING!! 🤬
Yeah, well my real oncologist will be back from maternity leave soon and I will barrage her with questions. The other one is no longer getting paid to answer my questions. I think he is just afraid I might want to sue him for never doing an MRI to diagnose this tumor in the year and a half I have been complaining about it.
If it didn't add to your stress, a lawsuit would definitely be worth considering!!
I seriously thought about it, but I just wrote to him and told him, next time you have a patient like this, do the MRI, and he said he was sorry and would be quicker to do the MRI in the future. Especially with him talking about how strangely lobular cancer behaves, he should have been more on top of it. What was important to me is that he acknowledge that and that he does better with other patients in the future.
You are much sweeter and more generous than I’d have been. God bless you for undoubtedly helping his future patients! 💗💗
Sorry you have to wait for your oncologist to come back. I was diagnosed with Lobular cancer in 2015. Had double mastectomy, chemo, radiation, hormone treatment and did pretty well for a while. Then I started having to pee in the most urgent fashion. Sort of snuck of on me 3 1/2 years after cancer treatments. If I even thought the word toilet -sploosh! Had to wear diapers every hour of every day. Had to go to emergency room twice with more pain (from kidney) than anything I had experienced in my old life so far. (no stones!) 8 months later with a laparotomy they found that cancer had wrapped around my ureture. Nothing to do about it, close me back up and officially announce that I was stage four. Started on Ibrance and Faslodex in January and have not had to wear a diaper or even a pad since the end of the first month on Ibrance. So it's doing something! Yes this cancer is weird. My onco calls it the sneeky one! But it is slow growing so I guess you get a trade off! They took out so many nodes during my initial surgery with the mastectomy that my surgeon told me most likely there were microscopic bits all through my body. She was right!!! In the beginning in 2015 had 3 mammograms and ultrasound and several other tests because I could feel it at weird times but it wasn't detected. They told me to come back in 6 months and maybe it would show. I demanded that a surgeon who specializes in cancer feel me up and lo and behold after 20 minutes her eyes went big and she said OMG there it is. Long story short....it was diagnosed as stage 3c right out of the gate. If I had not insisted that a surgeon spend time feeling for it.....well who knows? Anyway the moral of the story is that only you are your best advocate and don't worry about asking for what you think you might need. I'm hoping to get some years ahead of me but if I had let it slide I would be even more consumed with cancer now. Now I read some of these posts and wonder if my upset stomach is from some growth. I was looking at a family line and noticed that almost all of them died from stomach cancer. Hmmmmm perhaps lobular had run it's course through them? Exchange of information is SO valuable and I thank all you that take the time to write your experiences!
An upset stomach can have many causes and one of them is stress and worry. I hope you get that problem resolved so you don't have to worry. It is good that Ibrance helped you so much. All the best for you to have many more years. Hugs Marlene
Loopy, I have had indigestion since I started ibrance. Not nausea, but burning in my stomach, cramping, has, diarrhea. So it could be that. If your treatment is working at other sites, it should be working everywhere, right? Not that I know, but it makes sense, and it does seem to be working!
My oncologist also called it sneak attack cancer.
But if it can’t be seen on imaging, doesn’t that mean it can’t do damage? When it was discovered in my breast it was found through mammogram, and by then was pretty good sized.
If you can still talk to that doctor you should ask him what he meant by that. I am sure you would like more information. I think doctors are not aware that they need to explain themselves. All the best in your treatment. Hugs Marlene
I will ask my regular oncologist when I see her in a couple of weeks.
I was diagnosed with stage IV lobular breast cancer, bone mets only, in March 2004. I've been extremely fortunate and am on only third line treatment. And when cancer was progressing, I was not at all surprised! I just knew. I have had two partial mastectomies, no radiation, no chemo, just targeted treatment ; got almost five years from Femara, over 9 on Faslodex, and now am on Aromasin. Also have been on one of the bone drugs most of this time, too. Current getting Xgeva shots every 6 months. I am tired and my brain isn't what it was but I am here and well enough to drive, cook dinner 3 or 4 times a week and do about 1/3 of the grocery shopping for us.
Wow, that’s great! You are an inspiration! May you continue to be one for a very long time. No Ibrance?
I have had nurses and doctors casually say these kinds of things and they seem to have no idea how they affect us. I have learned to relax with it. When I was being diagnosed with metastases I saw a thoracic surgeon prior to being referred to the medical oncologist. He informed me that I had "live lymph nodes" in my lungs. This caused me no end of anguish. I was sure that meant those live nodes would result in imminent death. When I saw the medical oncologist finally a few weeks later I asked her about what they were. She replied, "I have no idea what live lymph nodes are. Sounds like surgeon talk." She waved her hand in the air as if to say who cares. Last year I had a resident tell me some scary things which I was pretty sure were wrong and they were. Talking with the people from SHARE settled me down and assured me he did not know what he was talking about. My oncologist clarified that one.
Hi Ruby,
I can relate! Even after consultations I will try to dissect what my oncologist has said and see if I may have missed any underlying meaning behind her words. If she says a blood test result was "satisfactory" does she really mean it could have been much better? Or if I am "generally well" could I be doing better on my treatment? I can't help myself.
My oncologist once told me I was "lucky to not be triple negative." Hmm... I have metastatic breast cancer. I would never put the word "lucky" into the same sentence as my diagnosis. I know she didn't mean anything by it and was just trying to make me feel better. She was probably saying that with hormonal cancers, like mine, there are more treatment options available. But some of the things they come out with still stun me! Unless they have had, or currently have, cancer they cannot really put themselves in our situation. One of my oncology nurses has metastatic breast cancer and she completely gets it. She is often the one who administers my zometa infusions. Hopefully she will be working when I go in for my next infusion on 10th July.
Sophie
I am the very same way and I am always trying to read into what they are "really" saying. When I was first diagnosed with metastasis the nurse upset me. I was trying to assure myself that I might live a long time. I asked her if on medication I could be stable for some time, right?????? I hoped like hell she would say yes. Instead, she paused and shook her head and replied, "That is not always possible." I was so upset. Later in the journey the same nurse told me to think of my cancer as a chronic illness that can be controlled. This made me feel much better.
I think that her first comment could have been better phrased to give me hope. I have come to like her very much. Overall, she is encouraging.
Yes, I can understand that. Rather than dash your hopes, the nurse should not have said that. Why focus on the negative when it is possible to stay stable for some time on treatment? At least she changed her approach later on. I also felt better when I was told my disease would be managed like a chronic illness. I can handle the idea of that, as diabetics and epileptics also have to manage their disease for the rest of their lives.
You are so right and my sister is an example. She is a diabetic on insulin and she likes to drink. She is having lots of complications. I fully believe she may die before myself. When I was diagnosed in 2004 with breast cancer so many people felt sorry for me. Several of them have died since then and I am still managing quite well. It is like a chronic illness and I am thankful for the treatments available to us.
I'm sorry to hear about your sister. Do you think she might listen if you have a word with her about her drinking? Too much alcohol can really complicate things for people who are diabetic. I know what you mean about people dying. I stopped counting the funerals I was attending after a while because there were so many in such a short period of time, just a few years ago. I was so happy when I received an invitation to a wedding. It made a nice change! I am also thankful for all the treatments that we have available to us. None of my treatment has stopped during this pandemic, which I am so relieved about. I was worried my treatment would be affected.
Ah that triple negative. My pathology report says my tumor is triple negative, but my ER is 2 percent and my PR is 70 percent. Another of my lingering questions. I am so confused.
That's interesting, Sharon, because I was never given percentages. I was just told my cancer was ER/PR+ and HER2-. I should have asked how strongly hormonal each receptor is. I'm not sure what good it would do, as I am already on treatment for it. But it is interesting to know more, don't you think?
Sophie
I was never aware of it in my original cancer diagnosis. I think it only came up this time because it had changed so much, and was so low. It’s interesting, but also really disconcerting.
Sharon
I feel like I am constantly learning about this disease!
Sophie
There is certainly a lot of experience here to learn from!
Sharon
Yes, there is. I like to hear of other people's experiences. It is reassuring to hear from others in a similar situation to me.
Sophie
MBC Lobular 
Hi - I'm new here. Diagnosed with Lobular MBC -- mets to abdomen
For ILC or Lobular ladies
Metaplastic carcinoma breast cancer
