Lobular Sucks!
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Nina, what about skin biopsy? I read somewhere that BC was found from skin biopsy.
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Breast MRI is usually the best modality for imaging ILC in the breast.* A skin punch biopsy is an important step if IBC is suspected. But please help your friend understand that soooooooo many women post here convinced they have IBC and they don't, because it seems all internet searches lead to IBC! A dermatologist is the person to see for a rash.
*See radiologist Dr. Ulaner's page at lobularbreastcancer.org.
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Cross-posting more or less from liver mets thread. I am worried and in suspense. In July/August both my breast cancer marker CA 27.29 and my GI marker 19.9 (which we started watching when the presumed bile duct mets happened) started to rise. PET-CT and CT with contrast every 12 weeks continued to show NEAD, and there were no symptoms of liver or bile duct mets. I know that when my markers do this slow rise something is brewing. So I asked for an abdominal MRI, and it also showed NED. I brought up the idea of whether there could be cancer in the colon, stomach, or pancreas as both markers can apply to those. Onc said ok we will order a colonoscopy. Then last week's PET report came out NEAD, but I saw no CT report for a couple days. Then my onc called me in the evening. The radiologist described 4 cm of cancer in the transverse colon! And said it correlated with an area of uptake on the PET! How could it get to 4cm and not be noticed before? I do not like how at the top of my scan reports it says simply "breast cancer" for my history. It should say "Lobular breast cancer" so the radiologist will know to look for mets in unusual places.
We cannot know yet if it is ILC mets or primary colon cancer. Friggin hell. If I have colon cancer it is my fault because I avoided screening colonoscopies as I was always dealing with enough garbage already. My onc says they would not normally be ordered for someone with mbc. Or this could be ILC mets to colon, which is what my onc with thinks more likely. The report describes "abnormal tissue" between the colon and stomach. I hope it is ILC so at least I won't have the guilt. I do not know exactly how it would be treated or how bad of a prognosis it carries either way. So, colonoscopy and biopsy next week then the wait for pathology. I hate this. I am having more than usual GI discomfort. Thanks for listening.
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Shetland
I’m sorry you are dealing with this the same thing happened to me and in my case it was lobular cancer and not a new primary. I had an endoscopy and colonoscopy and the cancer was never found until I had a cat scan. I also have it in my colon and on the outside of it as well. I’ll be thinking about you and hope you get the results you want(though neither is good). I just had a uterine biopsy done on Thursday due to lots of post menopausal bleeding so I’ll be anxiously waiting for those results. And I had about 5 Pet scans over two years and they never reported on my peritoneal carcinoma. I too think how was it missed? I asked my onc about my prognosis and he said what he always says-we are all unique and respond to different treatments in different ways what works for you may not work for me it just takes the right medicine. Good luck.
Kristin
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Kristin, thank you so much for replying and helping me not feel so alone with this odd development. My onc did say that the radiologist is not sure if it is inside or outside. That's what they said about the bile duct area mets (which never showed on any scan). After your CT scan showed it, did they biopsy? How did they treat it? Whatever it is has created a narrowing in the colon, so I don't know if I'll need just systemic therapy, or resection, or a stent...
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Shetland, I’m so sorry. I’m so glad you kept investigating. This disease makes no sense. I am betting it is lobular and not a new cancer. Please report back. When I found out I had breast cancer, I also felt guilty because I hadn’t had a mammogram in a few years. Wouldn’t have mattered in the least. They still can’t find the cancer in my breasts. I’ll be thinking about you.
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Thank you, KBL. I appreciate your support.
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Shetland, Oh Hell!! Why can't this be easier. Not knowing, yet knowing something is there, but not knowing what it is is frustrating. Now that I know why my markers were so high I'm done with one set of worry and on to another. A PET/CT with contrast finally focused in on previous pelvic free fluid (normal in many people), but had FDG uptake as well as Nodularity of the omentum with mild increased FDG uptake concerning for metastatic disease. So it has now officially returned to peritoneum are. There is no way to do a biopsy but CT results are considered diagnostic. No clinical trials since it is not measurable. I don't believe you have colon cancer so don't worry about not having a colonoscopy sooner. I'm sure it will be ILC mets. My ILC mets were found in my Peri-rectal node at the bottom of the colon, after appearing around my small intestine. All of these resolved after being on Xeloda 14 months when markers started rising for the next 4 months and here I am.
I'm discovering there are several different cancers in the peritoneum area (BC is a very small percentage) so there is some research/treatment being done there. My most recent discovery is the cyto-reduction and HIPEC surgery, a bit drastic, but I was informed it can be done laparoscopically. I'm calling them tomorrow to see if MBC can be treated this way.
I believe we both have peritoneal mets. The definition of peritoneum: Having to do with the parietal peritoneum (the tissue that lines the abdominal wall and pelvic cavity) and visceral peritoneum (the tissue that covers most of the organs in the abdomen, including the intestines). We might have them in different places but I think it is the name for them, not sure. And here is some information related to breast cancer and Peritoneal Mets - Table 3 summarizes the review so you don't have to read through the whole thing. Also information on HIPEC doctors can be found on HIPECTreatment.com
Take Care All, I keep trying to think positive as I plan my party for my 75th birthday next week. Hugs, NINA
Peritoneal Metastases from Breast Cancer: A Scoping Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6783220/
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SP, I am speechless and I am thinking of you and sending you a big hug. The saying of better the devil that you know that the one you don't, in lobular cases it is not the case. Maybe colon cancer would be easier to treat. You may know people like I do that have done colon surgery and now they are having a normal life. While lobular doesn't even show up on the scans! This slithery, nasty cancer!
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Lilly, I actually don't know which would be "better". But it would be complicated treating two kinds of cancer at once, and I would not want to go off my breast cancer treatment in order to deal with colon cancer treatment. Well, it's good I don't have to choose. I hope the pathology report is available quickly. Biopsy tomorrow.
Nina, as you say, it is good to know what is going on, but now there is the question of what to do about it. Even if you can't join a clinical trial, look at them anyway as you might be able to access some of the drugs through compassionate use, expanded access, etc. Thank you for the link. I started to read it, and it seems they distinguish between peritoneal and colon mets. Can you do a liquid biopsy (blood test for tumor DNA) to get some direction on treatment options? Are you getting an opinion at a major cancer center? Let us know what you learn about HIPEC.
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ShetlandPony, you are a diligent thriver. I’m glad you were persistent with your care team. I try to emulate you when I talk to my MO.
I’m so sorry to hear your news. My fear is that my lobular mets will go to my colon or GI tract because the one aunt who didn’t get BC got colon cancer. She’s doing well but it makes me think my genes are favorable to colon/GI mets.
Iwill be thinking of you tomorrow and hoping for a quick result for the biopsy.
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Good luck with the biopsy SP and I hope it goes easy. My MO told me that lobular frequently metastasize in gastrointestinal tract, peritoneum and retroperitoneum. This is also in this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4289705/
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ShetlandPony- Hope you get some helpful answers tomorrow. You know the questions to ask. That’s a real advantage!Treatment options are also so much better than when we first joined the club! Hate that this is happening!!
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hi Shetland
I’m sorry it’s taken me a while to reply-16 yr old daughters drama is occupying my time-at least it’s taken the focus off of me! To answer your question my onc did not biopsy. I’m at hopkins and went for a 2nd opinion at md Anderson in New Jersey and he also said no biopsy. They both said from the way it looked the way it presented it was lobular if it looks like a duck..I am now on Xeloda I was on Ibrance/Letrozale which did nothing for me. I’ve been on Xeloda 1500/ 14/7 for 6 months and so far so good. I have very few side effects and my scans look stable or even a smidge improved. I’ll take that! I did just have a uterine biopsy due to unexplained bleeding and won’t be surprised if it is in my uterus. I did look into the procedure you mentioned in another thread and am keeping that in my back pocket. I’m thinking of you!
Kristin
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No apologies necessary for any reason, Kristin. And there's no drama like sixteen-year-old drama! Xeloda worked great for me for quite a long time, and I hope you get a lot of mileage out of it, too. When do you expect your biopsy results? I am just hoping hoping they get a successful biopsy for me today, because they said in my case can't really say from the scans what it is. I don't know what other procedure you mean?
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Cyathea, thank you for your kind words. Yeah, there is a Lynch mutation in my family (50% chance of inheriting it) that I blame for two of us having breast cancer, one colon cancer, two skin cancer. I don't know why, but the Lynch cancers and the ILC mets sites are similar (GI tract, reproductive organs etc.) Also I wonder if the inflammation of chronic diarrhea from my cancer drugs made my colon a favorable place for cancer. But of course I needed these drugs that kept me NEAD for 1 1/2 years.
Thanks for your words of support, Lilly and Iwrite!
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I'm back from a long and hungry day. I was fit into the schedule this week so they did not roll me back until around 4:30 PM. Pathology Friday at the earliest. But. The gastroenterologist says it does not look at all like colon cancer, and he thinks it is ILC mets. It is in the *lining*. Typical ILC behavior! He was able to get biopsies. Yay! He also removed two tiny polyps. Hmm.
I was remembering all your caring posts today.
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Shetland, I’m glad that part is over and you will hopefully get the answer by Friday. Keeping you in my thoughts.
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so the thread is titled correctly lobular sucks! I got my uterine biopsy results last night it’s never good when the dr leaves a message and u can hear sadness in his voice you know the outcome is not good. I have lobular cancer in my uterus and endometrial lining. There is no way to tell if it’s a new spot or has been there since we found the progression in April. Ugh!! I want my uterus out but the onc doesn’t know if it will help or hurt psychologically I want to remove it but I know intellectually it probably won’t help the end game. I just had a ct scan last week and I quote uterus looks healthy and normal. I’ve had post menopausal bleeding and only had the biopsy to shut me up because I thought it could be in my uterus for months sucks to be right.
Kristin
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Partyoffive,
Is it your regular MO who is telling you what he/she thinks here? Because if it is, I'd get a second opinion from a gynecological oncologist. Years ago (in 2006) I had my first metastasis. It was a single site met found by my regular obgyn on my cervix as part of a routine gyn exam. She referred me to a gynecological oncologist, who then did all sorts of testing and said -- it ALL needs to come out. So I had a hysterectomy, oophorectomy, etc -- all female parts out. No further evidence of cancer was found at that point, but I just felt that he was more focused than my regular MO or my obgyn and could better evaluate.
Good luck.
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That is a very good suggestion from Bev.
Partyoffive: "Sucks to be right" So true! I called progression in the summer, and I called cancer in the colon, too. My onc bet on ILC rather than colon cancer. We were right. But. See quote.
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SP, I logged in at this site just to check your update. I don't know what to say but to give you a virtual hug. Sometimes, I am one of these crazy optimists that can think like, can be just a bad inflammation of the colon and not cancer. Also, I read somewhere that most polyps are not cancer.
Hugs
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BevJen-yes it’s actually an oncologist that is covering for my oncologist that is off on his own medical leave-he returns in two weeks. I already told her/him I’ve only spoken to them through Mychart that I want a 2nd from a gynecological oncologist. I’m sure my onc will agree when I see him in a couple weeks but I wanted to start the ball rolling now. I picked up my reports and kept a copy for my records so I can send them myself if need be. Thank you for the info I really appreciate it. Like I said I kind of already “knew” but denial is a nice place to live sometimes. I’m not a pessimist but I am a realist. Thanks again!
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ShetlandPony, I’m really sorry you’re going through this. I am sending a hug your way.
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Thanks, KBL. So the pathology confirms ILC met to the transverse colon. ER+, PR- Her2 1+ (Neg/low) FISH pending. Tumor genomic sequencing pending. Tomorrow I see my onc. I don't know how much of my treatment plant has been worked out. What worries me most at the moment is that the partial blockage will become a complete blockage. The last thing I need this to end up in the local ER with emergency surgery. I can only eat liquids and a few smooth, no-fiber foods like whipped potatoes. I am very hungry. I get bad cramping pains accompanied by bulging on my right belly, followed by gut noises. It is obvious that waste is having a lot of trouble crossing from right to left on its way out because of the stricture in the top middle. So it acts like constipation and diarrhea together. This is just one reason lobular sucks so bad. If this tumor was in my liver, my liver would still be functioning fine. But it is in the colon and it is causing a big problem. These weird mets mean we need not only breast cancer oncologists but surgeons and other specialists from other disciplines -- gastroenterology in my case, gynecology in Partyoffive's case, etc. Bev suggested I include an interventional radiologist. I need options to keep my colon functioning while we also do systemic therapy. I suspect my onc will offer a taxane chemotherapy. (Bye-bye hair for the third time. Hair is a luxury I can't always afford.)
I have searched for any others besides me and Party who are still on BCO, that has/had colon mets. I found four people who suspected them but did not have them. So Party, did you not need any intervention to prevent a blockage?
I'm glad we have this thread where the motley crew with weird ILC mets can talk.
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Shetland, I know someone from a different forum who has blockages, and she's told me how painful they are. We write each other privately at least a few times per month. If you have any questions, I can ask her. She is on. Xeloda now like me, so only her second line. It’s held things back for a little while, but I know you’ve already done that.
I'm so sorry. I can't imagine how much pain you're in. I hope they can figure a way for you able to eat more.
I am thinking of you and appreciate you keeping me posted. Hugs.
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SP, I am sorry to hear this news. I was the optimist who was hoping for just a severe inflammation. I am speechless and I am sending you a big hug and thank you for sharing your experience with us. It seems that the cancer cells have changed their behavior to PR-. I wonder what MO will be suggesting. Hugs SP.
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SP- I know that Liwi is no longer with us- bit, she had a stricture and feeding tube for awhile, but, chemo did resolve the structure and she was able to eat again.
Thinking of you and hope for a good resolution very soon.
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Shetland, I had ILC mets to my small intestine, is that the same as colon mets? Also in a peri-rectal node on the colon. It all seems related. Almost 2 years ago I had an emergency laparoscopic resection of the the ilium to unblock the squeezing and restore my ability to eat ererything. Since then Xeloda is the medicine that has kept everything resolved, until now. I now have mets in the pelvic free fluid which means it's still there, now in the peritoneum- ILC likes linings of things. I'm starting Taxol only tomorrow -markers jumped another 500 points last week. Don't think there is another medication that will go with it since I am not her2+ and I've tried all the anti-estrogen drugs. Had my port put in yesterday, shades of 23 years ago. Going wig shopping at UCSF in SF next week (decided against cold caps). Hoping for the best, for us ALL.
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Nina, the colon is the large intestine, and our cases sound pretty similar. Yesterday, when I told my onc about how the partial blockage was affecting me, she called a colorectal surgeon into the room. After discussion, I was admitted to the cancer center hospital and Friday will have, hopefully, a laparoscopic resection of the transverse colon so my bowel will function properly and I will be able to eat and poop normally. When I have recovered from that I will resume systemic therapy, perhaps a similar combo to what I was just on but adding Piqray or a PARP inhibitor. Genomic sequencing is pending.
I don't think you are out of drugs, Nina, and remember there are trials. Genomic sequencing of the tumor can help suggest both. Taxol was my first mbc treatment. Good luck with the wig shopping. I hope you find the perfect one.
KBL, the blockage pain only comes intermittently and doesn't last long. But I am having some pretty bad flank pain. I don't know if it is gas or a growing liver tumor or what. I can't take pain meds because they are constipating. Things are suddenly so miserable and complicated.
Thanks for your posts, Lilly and Nkb. Because I am doing well overall and my onc has more meds to offer, the surgeon wants to do the resection rather than a stent, which would be more for temporary palliative care.
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