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Lobular Sucks!

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Hi, KBL. I read what you posted above as well as on the rant thread about what is going on with you. If I can venture an opinion, I think your rising tumor markers, your symptoms and your intuition about them, and the thickening that showed on your scan, taken together, make a pretty good case for a treatment switch. Because you're not going to get anything more definite, are you? You don't want the cancer to get away. You have gotten around the average time on Ibrance. If you try Xeloda or something and you start to feel better and your markers go down, then you know. Also wondering if you have had a liquid biopsy?

    ILC Peeps, I am worried myself because of both tumor markers creeping up in spite of clear scans. The cancer that caused the bile duct stricture was never clearly visible, though the liver tumors were. But after the liver tumors shrank on new treatment, my endoscopist found I could go without the bile duct stents. My onc and I think there was unseen cancer there. The marker that we use for bile duct area (CA 19.9) just crossed into not normal. Darn. We are going to try an MRI, as I have been having CT and PET on the trial. We have begun the discussion of what treatment to use next, even though we are still waiting and watching.

  • kbl
    kbl Member Posts: 2,978

    ShetlandPony, thank you. My husband has been asking me for months to switch. I am finally going to listen. And you’re right, with everything happening, I better listen to my gut. I’ve told her for months I know it’s spreading, even though there hasn’t been proof. We do have that sense, don’t we?

    I did have a liquid biopsy, which was pretty much useless. Most of the testing I’ve had always says quantity not sufficient or something along those lines, and it didn’t give me much information. It took many samples sent to see if I had the PIK3CA, and I finally got a result that said negative. I would say we tried no less than four times.

    I’m sorry you’re dealing with your own possible progression. Please let me know how your MRI goes.

    I had a 19-9 done in 2016 when they thought it was multiple myeloma. It was high then as well. All of the tumor markers they did on that day were high. I asked the doc why he didn’t say anything about them, since I had no clue. He said because they were all high, he dismissed them. Not his exact words but the gist.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I read what you said on the Ibrance thread about getting a new doctor, KBL, and I completely agree with that. With a complicated case like this invisible ILC with mets in odd places, I think you should have a smart and experienced breast cancer oncologist who is willing and able to take more initiative. Not a PA. Not someone who will wait around for proof that is not coming while you have more progression. As you said, we are talking about your life. I don't think she would take it personally anyway, as she ought to recognize this is out of her expertise, and she would want the best for you. Maybe she will be relieved. You may have to be very focused to make this happen without delaying your treatment change.

  • kbl
    kbl Member Posts: 2,978

    Thank you, ShetlandPony. It's such a leap to change docs and meds at the same time. My oncologist had me meet his PA, and I really felt better with a woman and gravitated to her. My mistake. I probably should have switched back and forth. He still looks at the chart, I think. I've never asked. I'm still going to stay within the same group and have someone in mind. I'll keep you posted. She is quite young, maybe a little older than my daughter.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Same group sounds like a good way to get a new oncologist without too much delay. Then with that in place you could always seek out a second-opinion oncologist to check in with, someone at the best institution you can access (NCCN and/or someone with a particular interest in ILC preferred).

  • kbl
    kbl Member Posts: 2,978

    I emailed the Utah doctor where I did the trial FES to see if we could have another meeting, and they said they’re not able to. Darn it. There are no lobular specialists in my area.

    Moffitt is the next closest, but I don’t trust them either. They dismissed all my tumor markers being high back in 2016 and had a fellow do my bone marrow biopsy with no CT guidance. I didn’t even know that was a thing until I had the bone biopsy last year. Had they actually picked a spot that showed a lesion, I think I could have caught it in 2016 before it spread to my stomach.

    My daughter would like me to go to MD Anderson. There is one in Jacksonville, but they’re not associated with the one in Texas.

    I know the plan of care for each step is pretty much the same for everyone with ER+, PR+, so I’m not sure how good it would do to get a second opinion. I’m definitely going to ask to switch to the next line. I’m sure it’s the right decision. Just really scary.

    I really do appreciate the guidance. It feels like every time we switch, it’s like starting over. I think that’s why I’m scared. Also, I know it was in my stomach for a long time before it showed symptoms, but October will be the three-year mark when the symptoms started. It gets scary thinking stats probably say I’ve had more time than most. I try to push that way in the back of my brain. That’s where my grandson comes in. What a godsend.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Ya, push those scary stats to the back. I, too, have had more time than most. Sometimes I wonder if that is an ILC thing. And yup, each progression kinda feels like getting the diagnosis all over again, at least for a short time. Then the new treatment and the side effect du jour become routine. Crazy life.

  • kbl
    kbl Member Posts: 2,978

    I’m so glad to hear that. I see your treatments. You’ve had a few. Gives me hope. I see a few haven’t cut it, but then you find one that works.

  • ninaca
    ninaca Member Posts: 232

    My MO gave me this response when I asked about changing treatment without "signs of progression other than my tumor markers.

    "Yes, I have had a number of folks whose markers continue to increase, but do not have any clinical signs of progression for months and even as long as 1-2 years - meaning they continued to derive clinical benefit from their current drug for that time, despite the increase in markers - and not switching therapies afforded them more longevity.
    Oncologists do not typically change chemotherapies for advanced breast cancer based on tumor markers alone - I do understand this is challenging as there continues to be an increase in these levels, and I do hear you when you say you are willing to switch therapies, and I am aware that lobular cancers are not as easy to find on scans, and that your cancer behaves in a more infiltrative pattern. Given all of this, I would advise against switching therapies based on tumor markers alone - this is why we are doing scans earlier than we planned - to see if something has changed."

    Hopefully I will find out more after me FES PET in the next few weeks! I would love to find a Lobular specialist for a consulation.

  • kbl
    kbl Member Posts: 2,978

    NinaCA, unfortunately, my switch won't just be tumor marker related. I now have gastric wall thickening, which hasn't been seen on CT before. Also, when I did the FES PET, they also did an FDG. Nothing has ever shown up on that. The radiologist said he saw mets to my back that weren't in a previous FDG a little over a year ago, although I know I have extensive mets to my back. Those things, along with the fact that I'm having the exact same symptoms I did when we found the mets to my stomach (I am losing weight again and not able to eat much), I have to make a change because I'm not going to be able to stop losing the weight. I also told my gastroenterologist about the finding of gastric wall thickening, and his exact words were “Darn, that is concerning for progression." I've lost five pounds in two months, and I don't doubt I'll continue to lose. When I got on Ibrance, after a few months I was able to start eating again. Not enough to put a significant amount of weight on, but I could actually eat. I'm now down below what I was at my lowest before I got on Ibrance. If I lose too much, I'll be in the hospital.


    I hope the FES works for you. It did see my stomach mets, so I definitely know it can work. Just a note that I knew I had stomach mets before I went, but only through endoscopy because no imaging saw it.

  • ninaca
    ninaca Member Posts: 232

    My opinion- Change Meds as soon as you can!!!! I want these drugs to last forever but they do have an expiration date. I changed to Xeloda after Ibrance and it has worked for a few years until now. I think Taxol is next. Are they giving you any meds for the bone mets- some sort of bisphosphonate like Zometa, or Xgeva?

    The losing weight is very worrisome- possible blockage? Have you consulted a surgeon about your gastric thickening walls- Maybe there can be surgical intervention? Many Surgeons are not very familiar with MBC in the gastrointestinal area but are willing to take it on. It took a weight loss of 35 pounds and an increased thickening of intestinal walls before they were willing to do surgical intervention (exploratory-not sure what they would find). Also, maybe some of the Big hospitals with ILC specialists, or unusual mets specialists, will have video conferences for a second opinion and concrete suggestions. I may look into that. Take Care...

  • kbl
    kbl Member Posts: 2,978

    I do think it will be Xeloda. I'm sorry you're having to move on to another one. I am on Zometa. I would never have been put on it had I not asked for an MRI in 2020 of my lumbar after the other ones I had, last one in 2016. I requested it to see if anything had changed in my back because I never officially got diagnosed with mets to my bones. It had progressed significantly since 2016. Why they didn't do it when I first started with them, who knows. Anyway, I had a bone biopsy and confirmed it was breast cancer, and then we started Zometa. So I went seven years with it in my bones before Zometa was started.

    The April emergency room CT stated the thickening, but I missed it, and they didn't mention it. I'm getting so mad every time they screw something up. Anyway, I'm going to wait to see if she mentions it to me this time. If she doesn't by the time we end the conversation, I hope I can hold my composure.

    I think what I'd like to do is try Xeloda first, and if I still can't eat, I will ask for exploratory to see what's going on.

    I know we are all sick to death of doctor visits. I hope your switch goes well. I'll be thinking of you.

  • BevJen
    BevJen Member Posts: 2,341

    KBL,

    Be careful what you wish for., when you talk about xeloda. I am currently on xeloda coupled with neratinib (related to ERBB2 mutations). I am taking xeloda at a VERY low dose, and by the end of my week on (I do 7/7), I have a rough time getting anything down. So you might want to rethink your approach on this. An exploratory might find and clear up the problem, whereas putting all your eggs in the xeloda basket might just make things worse, if you react to the drug as I have been doing. Granted, many (most?) people seem to do just fine on xeloda. But there are outliers, like me, who really hate the drug.

    As for your provider, I'm with those folks who've said that you shouldn't be dependent upon a PA for any big decisions in your care. Those conversations should be had with a trained oncologist. No matter what experience a PA has had, I'm sorry, I don't think they can substitute for the training and knowledge that a medical doctor specializing in breast oncology brings to the table.

    As far as finding a lobular specialist, you can look around at academic publications about lobular and see whose name pops up, or look at the several lobular organizations and see who shows up. Those are the people you want to contact to arrange a second opinion. Many will do it via Telehealth meetings, especially if you focus them on particular issues that you are having. With the wonders of zoom, you don't have to rely only on those who are geographically close to you.

    I hope you have a good upcoming meeting with your provider, but I would run to the nearest exit and have a backup ready to switch to. It does not sound like your current provider is serving you well, and you need someone who understands your situation and guides you as to best next steps.

  • kbl
    kbl Member Posts: 2,978

    Ugh, BevJen. I'm sorry you're having such issues. I think that's why I'm so scared to switch. I know what Ibrance and Letrozole do to me. The unknown sucks.

    The PA supposedly consults with the onc, and I take partial blame for not rotating like he wanted to in the beginning. I think since I was doing okay, I felt comfortable with her. Now, not so much.

    I have tried to make phone appointments with people like Rachel Jankowitz, but they're not allowed. It would have to be with someone in state. I will look up articles.

    Have you had laparoscopy? I think I might ask my gastro if he knows anyone who can do it. I do hate having a procedure.

    I feel right back in that spot I was in for six years of not knowing what was wrong with me. This all blows.

    You know we all feel at times that people feel we're hypochondriacs. That's how I'm feeling right now. I need to push it aside.

    Thank you for your input as well. I am taking it all in. I don't know what I'd do if this cancer was moving quicker. At some point it is going to.


  • BevJen
    BevJen Member Posts: 2,341

    KBL,

    I did several Telehealth visits with a doc in Chicago and it was covered by my insurance. So I'd recheck that.I do know that some hospital systems will not allow Telehealth visits outside of the state in which the provider is licensed. I take it you live in Florida. I can't believe that there is no one there who has some significant experience with lobular. Look at the Lobular Breast Cancer Alliance -- on their opening page, they have a link to an Inspire page that relates to metastatic gastro cancer -- sounds perfect for you. Also, if you click through the links you will get the names of docs who are involved with lobular, and you can possibly write to them for suggestions of docs in your area.

    I'd ask your oncologist about some sort of an exploratory procedure, not the gastro, and let the oncologist lead you where you need to go. We are not doctors -- they are. They may have some other ideas.

    At my center, I was supposed to rotate between an NP who is very experienced and the MO. After I realized that the NP made some mistakes on things (even little things in my chart) I now push to meet with the MO. I tell her that on big decisions, I'm not comfortable with the NP making the call.

    This is all no fun but the one thing I've learned is that it's better to try and reach out to your provider or to other providers and see if they can help you, rather than just stew about what's going on with you. That is just going to whip you up into a frenzy and that cannot be good for any of us.

  • kbl
    kbl Member Posts: 2,978

    Thank you, BevJen. I've written MDAnderson in Houston so far. It's a holiday weekend, so I doubt I'll hear until Tuesday.

    I'll also look where you said in lbca. I had looked there before and know about Dr. Jankowitz and Ulaner. I'll look for others.

    I did send email to gastro and will also ask onc when I see them a week from tomorrow. I just wanted to ask him if he performs the surgery, not whether he recommends it. He is the one who found it in the first place, so he knows my story, and I trust him. If he doesn't, maybe he knows and can recommend someone who does it.

    I am definitely going to keep searching for a specialist who is able to meet by phone. I guess if there is a specialist not too far from Florida, I can make the trip. Just would rather meet by phone.

    I'll keep you posted.

    Edited to add I clicked on the Inspire link, and although it took me to the main page, I was able to find an abdominal/GI post that's quite extensive. Sadly, it stops in 2019, but it looks like I have a lot of reading to do. I use to talk to EV11, but, sadly, she stopped posting here and on Inspire.

  • ninaca
    ninaca Member Posts: 232

    KBL- I agree, the surgeon and MO need to consult together. It's the surgeons that knows what they can do safely. They are usually good at evaluating what to do though in my case the only reason they did exploratory surgery was because there was a thickening of the intestinal walls , the small intestine was full of fluid and the colon almost empty. It was an emergency that they felt they had to look at and see if they could fix it. I didn't know what was going to happen before they went in. The PET scan report indicated there was a major problem that alerted everyone.

    As for Xeloda, I too didn't like switching from my known drug, Ibrance. Just know if the side effects are too much you can reduce the dosage, reduce the timing, buy lots of lotions, use imodium, etc. I do know it helped me "resolve" all issues on my PET Scan in 4 months. But then, my issues are not with bone and that may make a difference. And now I contemplate a "new" cancer like someone recently stated (I think it was Bev Jen). Whenever you switch meds it's like looking at the cancer in a new light.

  • kbl
    kbl Member Posts: 2,978

    Thank you, NinaCA. It sounds like you had a really rough time, and I’m so sorry for that.I won’t be doing anything exploring until much later. I just want to try the Xeloda first. I’m so glad it has helped you. I hope it continues.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Starting in July/August my CA 27.29 and CA 19.9 (GI) started trending upward. It is now October and they are both out of normal range. Not high, but not my usual NEAD low normal. My PET-CT and CT with contrast and abdominal MRI all look great! My onc now agrees with me that the rising markers are an early sign of progression. In my case, markers do seem to be the first indicator. The liver mets eventually show, but nothing ever showed the mets that caused the bile duct stricture. But when my treatment worked, the liver mets shrank on imaging and both markers went down, and I could eventually go without the biliary stents. So. Now we have to decide when to change to a new treatment. I have another scan in a couple weeks. Stupid sneaky ILC. At least that is the assumption. What if I have colon cancer or something instead?

  • kbl
    kbl Member Posts: 2,978

    ShetlandPony, I’m so sorry. I agree lobular is so sneaky. Do you have information on what will be your next line? You know your body best, and I think we usually know something is up.

    I told my onc I wanted to switch because of symptoms, even though it didn’t really show. Have tumor markers Monday. I know mine may go up at first before they come down.

    Please let me know what you switch to. I’m thinking of you. Hugs.



  • lillyishere
    lillyishere Member Posts: 786

    Shetland, how are you feeling? Can your doctor change treatments if there is no sign of progression in scans? Can tumor markers go up for other reasons? I don't have mine checked, I believe my MO doesn't consider them reliable. I hope all your scans are OK and the markers stay where they are right now. For God's sake, Oncotype 16, Grade 1, stage 1 ILC! This type of cancer should grow in 20 years not now.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Right? I can think of possible "reasons" for the recurrence after only 2 1/2-3 years: Possibly under-staged because isolated tumor cells in the sentinel node maybe should be considered a micromet in ILC because of its single-file pattern of spread. Current recommendations for that Oncotype score at that age would be for possible chemo (or ovarian suppression + aromatase inhibitor) but at the time, before the TAILORx study, results were available, all three medical oncologists I consulted said that would be over-treatment. Undertreated because Oncotype may not be so valid with ILC. The too-long delays between surgery and rads and hormonal therapy at my former institution. De novo ILC resistance to tamoxifen. Maybe poor metabolizer of tamoxifen. Maybe false benign reading of other biopsied area of the same breast due to sampling error (when the liver mets showed ILC that area did as well). But we'll never know.

    Anyway! I feel fine! Just the usual treatment-induced diarrhea and fatigue to manage. It is pretty clear that something is brewing. My onc and I have seven years of correlating CA 27.29 to this cancer and two years correlating 19.9. One time when this happened, we reached a point where she said we should change treatment in spite of nothing showing on scan, and then the next scan did show the progression. But if nothing shows up soon in the liver, I think I will ask about a colonoscopy and endoscopy to assure myself it isn't colon cancer or new mets in stomach, colon, pancreas, because those two markers can both apply to those areas. So far it has only been liver and bile duct area.

    KBL, do you feel your symptoms have improved on your new treatment? I'm really interested to know what your TMs are doing!

    My onc's current idea is to use a PARP inhibitor (olaparib/Lynparza) because of tumor mutations shown on my last Guardant and Foundation One tests. I am composing a list of possibilities and questions to discuss with her. Also I may consult with LBCA docs.

  • kbl
    kbl Member Posts: 2,978

    LillyIsHere, I know your question was to ShetlandPony, but I will say I haven’t got definite progression shown on any scan, except some gastric wall thickening on a CT scan. My doc did not want me to switch meds. My gut told me to switch, so I did.

    ShetlandPony, I’m technically only on my second week on Xeloda. I had one week on/one week off, and now I’m on for seven. I don’t feel much difference yet in my symptoms, but I do feel I’m eating a little more. I am feeling a little burning now after I eat, but I’m sure that’s the Xeloda. I think I have silent GERD. I don’t usually have the burning with the acid reflux. I kind of appreciate that, but it’s probably not good.

    I will let you know what my tumor markers come back. I won’t have the results until Tuesday. I know you said I should get my 19-9 tested, but I’m going to give this some time. I am not having many issues so far. I had one spot on my foot that peeled this week, but that’s all. My fingers are crossed.


  • lillyishere
    lillyishere Member Posts: 786

    I'm sending you both hugs. I am so mad at medical scientists for still not having a scan, a test to figure out this disease. Shetland Pony, did your ILC go from grade 1 to 2? The ILC that was found in my breast was grade 1 and the rest of the breast was full of LCIS pleomorphic type, grade 3 was found after surgery. Still, one of MO told me that if I do nothing, no surgery, etc. it will take 10 years of living with ILC because it is slow-growing. KBL, same as your case, that it took several years for doctors to figure out it is ILC.

    Keep me posted on the results. I hope and pray they are stable.

  • ninaca
    ninaca Member Posts: 232

    Hi, Well, another 250 point increase in my CA15-3 today and since big increases have been happening every three weeks since June I'm surprised I'm not as freaked out as I was was. I'm still not showing any symptoms and nothing is showing up on the PET FDG or FES. My MO even offered to stop testing tumor markers since I was being so upset by them. Any hint at what symptoms I should be looking for with Lobular on the Loose? I know the taxanes are next but no one wants me to switch if there are no tumors showing. The only thing my FES Pet/CT showed was a small amount free fluid in the pelvis which could or could not mean anything. It's normal and I have a 50-50 chance of getting fluid with a "tap" that might show cancer cells, but then what? Sigh

    Lilly- ILC is very slow growing- I went from 2002- 20015 NED after liver mets were tackled with letrozole before progression,

    Nina

  • kbl
    kbl Member Posts: 2,978

    LillyIsHere, so very frustrating. I'm sorry for you as well. I will definitely keep you posted.

    NinaCA, I was so-called stable, but I wasn't feeling stable. My markers never dropped after the first 100 points m, and the FES PET still showed cancer everywhere. I have no idea if Ibrance and Letrozole really did a damn thing after the first few months of drops. I would follow your gut. I'm having symptoms, so I switched meds.


  • nkb
    nkb Member Posts: 1,561

    My MO says sometimes people who's TMs were very predictive no longer have predictive TMs. In the past I didn't have PETS every 3 months- after the treatment showed effectiveness I just followed my TMs and when they went up significantly a few months in a row- got a PET. Now I am getting PETs more often and it shows little spots here and there- the TMs are fluctuating, but, no doubling yet which happened to me in the past. when I had a big progression (always in the bone so far) I never felt anything- in fact, I almost always felt great. (except after a few weeks of tamoxifen and a virus- got super sick)

    KBL- my TMs went down very quickly and dramatically with Xeloda- hope yours do also.

    SP- hope all will stay quiet and TMs will behave.

  • kbl
    kbl Member Posts: 2,978

    Nkb, that’s great to know. My fingers are crossed that mine do too. They’ve been in the hundreds for the whole time. Would love a time where they’re normal.

  • ninaca
    ninaca Member Posts: 232

    I have a friend who has a rash on half of her breast, but a mammogram and an ultrasound didn't show up anything. She thinks she might have inflammatory BC but I think she should also look into ILC since my reading says a" Change in skin color, lasting rash or firm nodule" can be one of the symptoms. Anyone have the rash that lead to diagnosis? Where do they take the biopsy if there is not tumor?

    thanks, Nina


  • kbl
    kbl Member Posts: 2,978

    NinaCA, is there any way she can have an MRI? That can give one more look. I did not have a ras, so I’m sorry I can’t help there. Also, does she have dense breasts? That can always be an issue with seeing the problem. I’m sorry for her. It’s very frustrating when you know something is wrong but there is no definite proof.

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