Lobular Sucks!
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BevJen, I also had liver scarring noted in my last CT. I don’t trust the damn scans, so I’m not worried about it for now, especially since I’ve been feeling good lately.
I hope you get to the bottom of this scare so you can have peace again.
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KBL,
Thanks for your note. Not really scared at this point in time. I realized that I had my fulvestrant shots a few hours before my CT scan. The last time I did that, something weird showed up on my CT scan. The nurse who gave me the fulvestrant shots had warned me about it. So I'm guessing that that's what they saw.
Heading to Memorial Sloan Kettering in NYC for a consult tomorrow with a doc who supposedly specializes in HER2 mutations (ERRB) to see what she recommends as a next line of treatment. My MO is sending me there. It's about a four drive for us to get there, and now that we're headed there, I'm not really sure why. There are only so many drugs out there that they can try. I guess I don't know why I stupidly didn't ask why my MO couldn't just discuss it with the doc at MSK -- it's not like they will be doing any additional testing. This is why I'm constantly amazed at the practice of medicine.
Will report back if she has anything interesting to say. ERRB2 mutations are not that common, but they are more common in lobular rather than ductal cancers.
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BevJen, I’m in your pocket for your visit. I hope it ends up being worth the drive. I’ll be thinking of you. Quick question. Did you find ERRB2 in genetic testing or in a biopsy of a tumor? I have no genetic ERRB2, but is it possible to have it in a tumor? This stuff is so confusing and complicated.
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KBL,
I had a Foundation One test (genomic test) on a liver tumor and that's how they found the mutations. Also had another genomic test -- maybe Caris -- about two years later and it was verified. At this point in time, my MO's speculation is that the ERRB2 mutations are probably what are driving my cancer, and that's one of the reasons I'm on neratinib.
These were genomic tests, not genetic tests.
I'll have to wait a bit to see this doc at MSK. After traveling up to the NYC area, I received a text this morning that the doc was out sick all week but that they had made another appointment for me for this coming Friday with a different provider. Uh, no -- not going to stay up here and pay for a hotel until then, and my onc wanted me to see this specific provider. So I need to work on when I can come up here again and she has availability. What a pain in the you know what.
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BevJen, what a disappointment! I hope you at least were able to enjoy a good dinner, shopping or something fun while in NYC. Maybe a Zoom chat with this doctor would be a better use of your time. Sometimes I wish the medical community would look at us as "customers", and consider our time as valuable as theirs. Have a safe trip home.
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BevJen, what a waste of time, indeed. I’m so sorry. How rude was that? They could have let you know before you traveled. Oh, to be able to bill them when they cost us money.
Thank you for the clarification. I was asking because I have no genetic link, but when I had a Caris, it said something about AR being positive and PTEN. Now I’m wondering if I should be asking more questions. I am doing well right now, so I’m not as concerned as if I progress.
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Hi,
My onc did a guardant360 my insurance is fighting it. I think it will tell me any changes. I did have invitae which found the CHEK2.
Has anyone heard of the guardant360 or had it gone that can share details?
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Dear Mocogram,
I wish I could have done a zoom/telehealth appointment with this doc. Unfortunately, Memorial Sloan Kettering is a stickler for standards for such visits. This particular doctor is not admitted to practice in Maryland, so she won't do any kind of virtual visit -- it wouldn't be covered under insurance, either.
We stayed in northern NJ where I grew up, and were able to visit with my cousin who I haven't seen since 2017, so that was a nice perk. We didn't go into the city at all -- next time. However, having grown up so close to Manhattan, I'm not as enamored of the city as many others are. That's why we stayed in NJ.
Will try to set something up tomorrow for some time in May.
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KBL,
I think that a PTEN mutation is fairly common in breast cancer. An AR mutation has to do with androgen receptors. These are things that you can probably google and get some reliable info. It's always helpful to know what mutations you have, because they could be a doorway to new treatments as they come along. Or you could discuss with your oncologist.
I have over 20 mutations in my cancer -- very unusual.
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BevJen, thank you for that info. I will Google. Now, 20 is A LOT. Wow
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For those of you who are not aware of the Lobular Breast Cancer Alliance, they just posted a discussion with Dr. Otto Metzger from Dana Farber about lobular cancer. I've been at this for a long time, and I found the presentation to be very informative and I learned a lot. Go to lobularbreastcancer.org.
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Thanks for this, Bev. My MSK back-up onc just told me in a telehealth meeting that a mutation I have, CDH1, (in a new Foundation One test in Feb), is a genetic marker of possible lobular breast cancer. My original diagnosis in 1991 was of IDC. She told me that I could have both and that treatment is the same. I'm going to start "reading up".....
I have signed up for the Lobular Breast Cancer Alliance you recommended, too.
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Hi, Lynn,
I have that mutation -- it showed up on a Foundation One report. Generally, they do treat lobular the same as ductal, but they are trying to increase studies to see if that should be further investigated.
BTW, my MO at Hopkins wanted me to see a doc at MSK who specializes in ERBB2 mutations. I have an appointment with her May 17 (first appointment I scheduled fell through because she was sick when I was scheduled). Two things: her name is Khomal Jhaverry. Ever heard of her? Second, I was told that most docs at MSK were not doing telehealth appointments so I've got to go up to NYC to see her. I'm wondering if it's because I'm a new patient -- any info about Telehealth and MSK?
Thanks.
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What does metastasized to other mean? do you mind me asking.
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Metastized to other was a choice when I did my history. In my particular case, my original diagnosis was in 2003. After surgery, chemo, and radiation, I was put on tamoxifen in 2004. In 2006, I had my first Metastasis -- it was to my cervix, if you can believe that. It was found by my gynecologist as part of a routine gyn exam. When the biopsy came back, my MO said I was only one of a reported 8 cases she could find where something like this occurred.
In 2019, things were much more "normal" re metastasis -- liver and bones.
If you need any more info, please PM me.
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My cancer metastasized to my stomach. That’s why I put “other.” I’m not sure that shows up anymore in my diagnosis on here. Some things disappeared with the update.
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Bev, was it you who asked me about telehealth and MSK? I'm lost in the system and not sure from whom that question came. My MSK back-up onc is Dr. Rachel Sanford, and I've done two telehealth meetings with her. Very easy and informative. She followed up with notes from the meeting, and I followed up with her through the patient portal ("My MSK") with questions, which were promptly answered. If I can tell you more, let me know.
On another note: during that meeting, at which I had asked that she review my most recent (of two, one in 2019 and one this Feb) Foundation One report. She noted that I have the CDH1 mutation, which she said is a possible indicator of lobular BC. I also have the ERBB2 but have 0 HER2 receptors, per all past path reports. My original path report from 1991, sadly lost years ago, noted IDC, but she said that I may have had both originally. My BC metastasized in 2017 or at least it showed up as MBC then. Still bone only but everywhere in my skeleton.
Mutation burden has also increased.
I'm reading through this string and trying to catch up. I recognize so MANY of you ladies from past and current strings! Sending hugs....
If you can't see the highlighted chart below, let me know, and I'll figure it out.
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Well, this is pretty pitiful...it was on this site, and I replied on May 1. Getting dotty (ier)...
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I did a video a while back for Lobular Breast Cancer Alliance. They just sent out a video moonshot to the Biden administration, and as I watched the video, I was shocked to see myself. I am about the 3-minute mark. Who knew? I am glad to be among other lobular women and hope it helps.
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Well done, KBL!
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Great job!
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Wonderful Kathy!
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Thank you. I hope it helps. It may not be in my lifetime, but it could help if my daughter ends up with this dreadful disease
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Kris,
Just watched the video in which you are featured. Great job! Thanks for sharing.
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Thank you, Mojos. I really appreciate it.
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kbl,
Thanks for sharing! Let’s hope this video gets a response and they begin to sub categorize Lobular- it’s time something changes
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meiard- LBC can respond well to the Ai's, like your exemestane. My liver met was discovered 3 years after initial BC diagnosis because I had a large tumor for my initial BC diagnosis and the doctor followed me with tumor markers. When the markers got elevated I got scanned, they found the liver met and then immediately switched to Femara (an AI). That kept the cancer in check for 14 years. Now my current nodularity of the omentum is something that cannot be biopsied and inconsistently shows up on scans, it's so like Lobular to be confusing. I was only allowed to change my chemo after a PET showed activity in the Pelvic fluid. The Taxol I'm on for the past 8 months has been very helpful but I 'm waiting for the next thing to show up. LBC in The peritoneal cavity is harder to be seen on scans and systemic is the only way right now to keep it check that I know of. Mine has also gone to the small intestine (surgically removed and reattached successfully), and rectal area. It was emergency surgery because a year of complaining did not make them think of cancer. It may be "rare" for them but looking at this website it is not so very rare. Peritoneal carcinomatosis'- seems to be what doctors jump to when something is found there.
Speaking of radiologists going by previous reports, I got accidentally written up as having a hysterectomy (it was a hepatectomy but was read wrong by one radiologist). I had to have an addendum written to correct this. It happened 2 more times where the radiologist repeated the wrong information (obviously not looking at my scan) with 2 more addendums!
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I don't know how to start a new discussion on this thread but I belong here, so here it is. Please know
So the thing I've been frightened would happen for 12 years happened. Recurrence, most likely ILC. I'm too afraid to look at my PET right now (every nerve in my body is telling me NO, so I will honor that, since I'm a quivering, heart pounding mess at present, medical PTSD on full red alert, catastrophic thinking roaring at supersonic speed): why would it matter what I saw? I know it's in me again. It is in stomach, lung and probably ureter. Not in bones so far she thinks. I couldn't bring myself to ask more because I was in shock when I saw her Friday.
I know about ILC and how it behaves. I am trying to keep myself from doing a Thelma and Louise thing here, and drive off a cliff.
My Mayo oncologist is certain it is a return of ILC (biopsy scheduled in two weeks, then pathology, sequencing of the tissue, etc. etc.), and that it was there for some time but that the Aromasin was holding it back, and that the hobgoblin cleverly figured out how to bypass it finally. I get all that — I've read the research about how cancer behaves and how ILC behaves. I was always high risk because of original dx. I get that, but:
My WBC, RBC, all CBCs are normal. Which baffles me. I have no symptoms. I thought I was in the best shape of my life to date (age 65). I just hiked 9 miles out of the Grand Canyon 3 weeks ago in a day, for heaven's sake.
No shortness of breath, except for my anxiety, no pain, no aches, no nothing, except for that pesky urinary problem we initially thought was overactive bladder. And that pesky loose stool sometimes thing that was dx as IBS and controlled with adding fiber.
The fact that I have no symptoms seemed to lift my oncologist's spirits and thought I could get at least a few more years. Wow, I've never heard my life described in a "few years", ever.
I go to hot yoga 4 times a week and walk (miles) a lot. I meditate, I was having a happy life, getting ready to retire from university teaching.
I've been Swedish death-cleaning the past two days. I'm getting out my will today and updating funeral arrangements. This is where my head is.
And my 79 year old husband currently is in bed, napping off the fatigue of his androgen-deprivation injection. He has advanced cancer, too: of the prostate. We seem to be in some horrible, awful race to the end.
I'll know more in a couple of weeks (mutations, genes, all that), 27-29, aggressiveness. MO is having me start Verzenio and Fasolodex? I think that's it. One pill 2x a day and an injection 2x a month. She didn't think I needed chemo (infusions). Yet anyway.
I need hope, reassurance, and NO fear-based, alarmist words right now. I need to know there is more time out there for me. I'm afraid that the drugs will affect my QOL so badly I won't be able to be my normal active self, one that relieved PTSD by moving my body regularly. This is just too much to take in. I know my life will change, but I'm thinking I have like a month or two to life.
I need people to tell me some good things right now or I'll just go crazy. I am planning my funeral, for pete's sake.
Claire
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Hi, Claire!
I’m so sorry for what you’re going through right now. I can’t tell you what the future holds for you, but back when you were first diagnosed, Verzenio wasn’t on the market yet. I took Ibrance and had two good years on it, along with Letrozole. I then switched to Faslodex and Xeloda. I didn’t take the Xeloda as long, but I was on the Faslodex for over two years. I’m now on Orserdu. To make a long story short, I was a missed diagnosis for six years with no treatment. I was de novo at the time of diagnosis. I have it in my stomach and all of my bone and bone marrow from skull to femurs. These new medicines have given patients hope.
I can’t tell you how you’ll react to the verzenio. I know they always start off at the highest dose. If it’s too much, you can ask for a reduction.
If you ever need interaction with others, please sign up for one of the Zoom meetings we have. I’m usually always on the Monday meeting, but there are others as well. We are a group of women who give so much support to each other.
Please keep me posted on the findings.
I’ll be thinking about you.
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Thank you kbl. The hobgoblin just figured out how to outrun the Aromasin, my MO believes. I hope the next combo of drugs will knock it back as it did before-my MO says that it's quite effective. I suppose after the pathology, DNA, markers, mutations I'll know more. I'm at Mayo so I have hope in the best tx from them
In shock. Dealing with crippling anxiety. Terrified and hope that I can hear from more ILC recurrencers (is that a word?) that they've done okay in spite of side effects and have lived at least more than a few months. I can't help but feel doom, but having lost my late husband to oral carcinoma in 1996 (got married in Sept 95, found out he was terminal the next month, and by Jan 96 he was gone), and it was this time of year during the hols, everything is a real trigger for me which doesn't help. I keep seeing him waste away in months.
Claire
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