De Novo Stage IV
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Just checking in on Metastatic Breast Cancer Awareness Day. It's a somber day but also empowering, mixed feelings. However, I'm blessed to have a support group. Been reading along, and hope all remains well despite MBC.
Approx 2 weeks ago my spouse and I had covid. Despite vaccines, boosters, masks, etc., it still got us. I was eligible for Paxlovid. No problem with the medication but got rebound on day 9 (despite a negative test), lost taste and smell. It's gradually coming back but still cough up clear mucous. It could have been worse but eventually I believe everyone will have it.
Even though I don't post every day, I think about everyone, hopefully living their BEST lives. We are so much more then MBC. take care.
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Hi, Tinkerbell!
So happy to hear from you. I'm so sorry you both got Covid. I'm glad to hear it's getting a little better for you. Hopefully, you'll get all your taste and smell senses back. It's good to hear from you. I think about how you're doing.
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KBL: Thanks for the well wishes. Ready to venture out soon.
Just wondering did anyone have a chance to watch #LightupMBC yesterday. It brought on great sadness hearing from so many ladies with MBC. Not sure if Metavivor raised a lot but hope they did for "Research" for a cure. Sometimes I feel De Novo is lost in the discussion with MBC. Anybody else feel this way?
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Tinkerbell, I watched a little last night. It was late, and I’m usually in bed at 9. Lol.
I watched a little bit this morning and ran across something she said about only 10% of MBC patients make it past ten years.
I must be part of that 10% because I’ve been covered in cancer that I know of since 2013 but had it way before then since it was so widespread when it was found.
I don’t hear a lot about de novo, but I think since I didn’t have treatment for the first six years it was known to be there and I was treatment naive, that’s why I’m still here. I could be wrong, but I’m grateful to still be here.
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tinkerbell - no, I didn't see any of the live streaming event - I knew it was MBC Awareness Day, but was unaware of the fundraising event. I do think de novo is lost in the discussion. It's very frustrating, at times. The anecdotes about people who were late getting their mammograms and were then dxd Stage IV really get under my skin, as if it's somehow their fault, or the mammogram was going to magically stop the cancer. Don't get me wrong, mammograms are important and can help a lot of people with early lower stage dx, but clearly not everyone. We know, here, that people are dx'd Stage IV with clear mammograms and others that had to really self-advocate to finally get a dx at all.
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Seeq: Thanks for the validation regarding De Novo being lost in the discussion. From my understanding De Novo vs Recurrent may be a "horse of a different color". Like different subtypes of MBC, so the conversation tends to focus on ER, PR and HER status. When I think of this further, it reminds me of KBL with lobular, tends to be lost in the conversation too.
KBL: Not sure if this is going to be posted but read an article of my news feeds that brought attention to lobular. https://www.post-gazette.com/news/health/2022/10/17/breast-cancer-invasive-lobular-cancer-ilc-idc-steffi-oesterreic
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The link went to a page that said the article was removed
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Tinkerbell, thank you so much. I tried looking for article a different way. Is this the one you were trying to post?
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I'm not sure whether I posted this yet, but I applied to be on the Lobular Breast Cancer Alliance Patient Advisory Board, and I've been accepted. I hope to learn much more than I know now. I will report back when I have any info.
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Congratulations Kris, Keep us posted! My MO is on their scientific advisory board.
(It’s Maureen-from the Wed group😊
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KBL: Yes. Thank you for posting. Congratulations on being selected on the Lobular BC Alliance Patient Advisory Board.
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Thank you, Maureen and Tinkerbell. I'll definitely come back and post about what's happening. My first meeting is next week.
And hi, Maureen. Sorry I missed Wednesday.
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Congratulations Kris! can't wait to hear what you learn. I've been dismissed re ILC (" it's just garden variety breast cancer", "no we don't treat it differently".) even at UCSF.
interestingly enough in listening to podcasts about treatment for breast cancer, how many people are ILC are never discussed and when the PM is asked how many in the study were ILC, they don't know and never checked.
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Nkb, that really has to change, and I think they’re starting to feel that way more and more. It’s not the same and should not be treated the same. Maybe some of the same medications will work but not other things, like imaging.
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Kris -
I am so happy that you were chosen to be on the Advisory Board!
You will bring much needed information and advice, which is very necessary in your case.
Good luck and let us know what happens.
- Anna
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kbl, great to hear you were accepted onto the Lobular Breast Cancer Alliance Patient Advisory Board!
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Thank you, Anna and DivineMrsM. I really hope I can contribute something that helps.
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I have felt alone in de novo ILC metastasis to spine, femur, and lymph nodes. Religiously had mammograms and ultra sound because of dense breast tissue.
I’ve suffered severe pain for several years, and kept the neurosurgeon’s phone busy. In 2020, he ordered an MRI that was inconclusive for surgery, but the radiologist mentioned changes to the bone consistent with age. Two years later, I can’t walk very far without severe pain and feeling ill. I complained again to neurosurgeon, another MRI later, and I get a call to go get a nuclear bone scan and a referral to oncology.
Oncologist looks at the two MRIs and immediately knows that the changes to my bones are metastatic. He orders a bone biopsy and low and behold it tests positive for Breast Cancer. I do a quick look at my breasts … no lumps … but, the left nipple was very slightly retracted.Oncologist tells me I am stage 4. He then tells me to go and do what brings me joy, I immediately schedule a second opinion at MD Anderson. That afternoon I got a mammogram … nothing; I get an ultra sound … nothing; I get a lymph node biopsy, but results will take a few days. Radiologist schedules one last test, a breast MRI, The next day I read in My Chart that I have invasive lobular carcinoma metastatic type. I look up the words and have never heard of such a thing.
After a few days, I read more results in My Chart and think I am going to die soon. I can’t live like that, so I called the oncologist’s office and beg for someone to discuss my test results. Oncologist sees me immediately. He tells me the NCCN protocol he wants to follow and is more forthcoming with information.
Second opinion confirmed the diagnosis adding de novo to the label. She gives me hope that we can stop the proliferation. She added Kisqali to the anastrozole and Zometa. I have looked up those drugs and hope they do their jobs w/o too many side effects.
I have learned that de novo ILC with metastasis has a 22% survival rate past 5-years. I’ll take those odds and live each day to the best of my ability1 -
tweedle,
Welcome but sorry that you're joining us. kbl, one of our members with ILC, will be a good resource for you. Don't feel bad about never having heard of ILC. I never even knew that there was more than one type of bc until I was dx'ed!
I know you're in pain but I love your last sentence. And before I comment further on that, what are you doing for pain relief? Quite a few of us do lots of experimentation to see what works for us, both prescription and non-prescription. Your last sentence is pretty much how I've approached this for the past 11 years. I had no idea how things would go when first dx'ed (the idea of oligometastases was very new back then). Clairvoyance is not one of my talents so I just resolved to live ever day to the best of my ability. That seemed to make sense whether I had 11 months or 11 years. Get that pain under control if possible and take care.
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tweedle, the diagnosis I received was lobular bc/mets to the bone after finding a lump in late 2010 (I’d had yearly mammograms for at least 10 years prior.) I’m sorry you find yourself here but as exbrnxgrl said, you are so right to live each day to the best of your ability. I’m so glad you sought a second opinion. I hope for all good things for you!
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I think I found my people here. You are using the words I’ve come into contact with. I also have cardiometabolic co-morbidities to include diabetes, high blood pressure, high cholesterol, high triglycerides, and non-alcoholic fatty liver. I’ve been struggling for a while.
Breast Cancer was nowhere on my vision board. I have no idea how long I’ve had cancer, and it does make me wonder how long this earth suit I wear can hold out. The side effects of the drugs are bound to increase my other symptoms. The stress has caused a couple weeks of high glucose readings. I’ve got that back under control this week.
Thank you for being so kind and letting me be real in a safe place.
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I’m still trying to learn how to navigate here. I wanted to thank you both for replying to my tome. So much new information to process. Reading here is really helpful to get familiar with this strange turn my life journey has taken. I am not figuring out how to get to the pages in the middle. I’m not successful pressing previous, next, or the page numbers. Any advice?
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tweedle,
Our threads don’t really thread. When you or anyone reply, the reply simply becomes the latest post in the thread, even if you are replying to someone several posts or pages back. If you want to respond to someone in particular, you need to mention their screen name. Each page offers two options; start at the top of the page or jump to the bottom. The way to access posts in between top and bottom is to simply scroll through the whole page. Hope this helps.
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tweedle, the forum is currently a shell of its former self after a questionable “upgrade” in March. A big uproar over the (botched) changes from members led the powers that be to work on developing a better, more user friendly platform which they say should roll out early next year. Until then, things on the forum might be frustrating at times. So it’s not you, it’s the forum. We all hope it’s not much longer before we see improvements.
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exbrnxgrl and divinemrsm thank you for explaining. Hope you both have goid days
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Tweedle- also click on add to my favorites and it will then be in your favorites (can find replies easily using left hand list under all topics.
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It isn’t well advertised in my city, but disabled voters have a right to go to the front of the line at polling places. There are even seated booths to cast your vote. It is also possible to vote in your car if you can figure out who to call. With bone mets in my lumbar spine, this was a Godsend to me today
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tweedle, I’m glad you found us. There is so much to learn when we’re first diagnosed. It can be exhausting, but I hope you feel our love and support.
Insurance companies haven’t caught up with the science on ILC. Women who have dense breasts or who are at higher risk due to family history need to have access to MRIs. Even though I KNEW I would get BC and my docs knew I was high risk, they still missed my tumor for several years. I love that kbl is now a patient advocate!
I approach treatment much like you are, just taking one day at a time and trying to live the best life possible. Like you, I have other health issues beyond BC. Health issues, especially pain, are tough. I try to keep myself distracted with work and home duties. That said, I think we have to adjust to new realities. The treatment affects our brain, our joints, our muscles and really our entire body. Adapting to those changes requires some radical acceptance, but life can still have moments of light, joy, and purpose. When you are too tired, too sad or too “whatever” to look for and find those moments, reach out to us. We’ll commiserate and send you virtual hugs. ((Hugs))
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cyathea thank you for the fellowship, looks like you have really had an experience. I'm glad to be in contact with women who have been there done that and definitely should have several t-shirts!
I am extremely tired tonight, so will probably go to bed soon. I really appreciate your post.
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kbl
I don't really have a palpable tumor ... I think I heard the term "occult tumor" during my second opinion examination. That was my first time to hear the word "de novo." As I get more familiar with the nomenclature the more I am beginning to comprehend y'all's posts. (Yes, I am a West Texas girl, so I'll probably "bless your hearts" a few times also). Met with my psychiatrist today, and he recommended that I do mindfulness work. I haven't researched it yet, but, it sounds like living in the moment is the only way to cope with this disease. I injured my right femur in July trying to do a vigorous walking program. I had no idea I had bone mets, so hadn't a clue that I was at risk for fractures. I wish I had been more kind to myself when I was in so much pain. I would never have spoken to or treated poorly anyone else the way I spoke to and treated myself over the last few months before diagnosis.
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