De Novo Stage IV
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Global Gal- Woohoo!! Way to go!
Edited because my predictive text is stupid.
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Wonderful news global girl
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I'm so happy for you, GlobalGal. So exciting. I can feel your relief.
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Great to hear all that good news, GlobalGal! Yes, two years is a “first milestone" I think, in terms of feeling like we are beating the odds. No expiration dates!
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Global, you are on a roll!! As for two years, I celebrated that milestone when my doctor told me it was a big one. SO let's scream and shout WOOO HOOO!
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It's been a few weeks. It's great to read some folks have had great scans. It's been a hectic month for me with imaging, medical appointments, vaccine, etc. A few months back I mentioned having a brain MRI. I was diagnosed with a rare benign brain tumor, vestibular schwannoma or acoustic neuroma. The Otorhinolaryngologist has me on a watch and wait schedule, come back in 6 months for brain MRI and visit. At the end of the visit, the Otorhinolaryngologist, mentioned I took the news rather calm about the benign brain tumor. Unfortunately, I was rather impulsive, " When you hear the word "benign" when you have MBC, it's a "win". With that said he was rather speechless... It's crazy how perspective can change, and trying not to think the worse with every headache, backache, etc. Crazy as it sounds, having a "benign" tumor gave me a mental boost. Take care and be well.
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Hey Tinkerbell, congrats on your benign news. Sorry they found something but at least it’s a benign something. Totally agree how this disease can give us perspective in not sweating the small stuff and even some of the not-small stuff.
Hopefully you’ll now have time to rest a little after all these appointments
Take care.
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Hi, Tinkerbell. I’m sorry you have something else to think about. Please keep us posted about it as time goes on.
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Hi, I just wanted to share that my first scans since diagnosis went well.
Liver - According to my MO, I was maybe a couple months away from liver failure. I went from extensive disease to a few spots.
Lungs - I thought I only had two spots in my lungs originally, but in reality I had innumerable spots. Now just a few.
Bones - I had extensive mets, including compression fractures that cause me to hunch when I walk... hoping to fix this. I didn't get a clear picture of improvement because apparently healing bones can look the same as cancer?
Brain - Last checked I went from 14 spots to 1, had that zapped and will get another MRI in April.
I also had involvement in one lymph node, which was clear.
I know I should be happy with these results, and I mostly am, although I was hoping to have my lungs "clear" since I thought I didn't have much cancer there. My goal obviously is to reach NED... if anyone has stories of people with extensive disease like mine that managed to achieve this, I would love to hear it.
Wishing everyone well.
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That is good to hear! Sounds like you’re responding well, the H&P is so good for so many of us HER2 positive people.
About scans and bone Mets, yes it’s true, the radiologist will usually still see sclerotic lesions on a scan even if the cancer is not active. I get PET/CT scans and as long as they say sclerotic lesions with “no hypermetabolic activity” on the report it means those are healed areas.
As for people with extensive mets who achieve NED - I can think of at least one person who told her story on another forum (her2support) who had extensive mets including brain Mets who eventually achieved NED and even went off treatment for awhile. She is a long term survivor.
When I want inspiration, I try to look for long term survivors who are also HER2 since their cases are going to relate most closely to mine. Fortunately, the drugs for our particular cancer are pretty effective, even the second and third line, so a lot of HER2 MBC ladies are getting a good long run. Definitely a reason for some optimism. Hang in there
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Olma, good to know about the bone mets. And thank you for giving a bit of hope, I needed that boost of optimism. I hadn't heard of the Her2Support forum - I will definitely bookmark it along with this one. Thanks!
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Olma61 and KBL: Thanks for the kind words. At some point I may need surgery or GK for the benign brain tumor. Thus far I have tinnitus and headaches.
When I seen my MO last week, she mentioned my next FDG pet/ct scan In June will be utilizing Cerianna (new ER positive breast cancer agent). This drug will detect ER positive lesions on imaging. For folks that need imaging soon you may want to ask your provider if you are ER positive.
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Tinkerbell, is that actually an FES PET? I have been wanting to have one because I have ILC, and they said it may show it much better. It would be nice if they start using it for that.
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Yes, Cerianna is the drug agent for the (FES) for PET imaging.
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Congrats superdenovo, that’s a win and while it may not be everything you hoped for, it is progress in the right direction.
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exciting news about that new PET imaging. I am triple positive, I wonder if I can get it.
I will ask if they do it at my center next week when I go for my twice-postponed scan. Hopefully it isn't postponed again.
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Super, no news or less news for us is great news! Congratulations!
Tinkerbell, thanks for sharing the excellent news, I bet many ER+ would get benefit of this new technology, especially ILC s, so good for KBL! I hope this Cerianna agent will be available in all cancer centers soon.
Cut and paste from the following link:
“Unlike traditional imaging methods that rely on blood flow to a specific area to create a contrast-enhanced image or cellular metabolism for an FDG PET/CT scan, Cerianna utilizes the hormone receptors on the surface of the cells for localization.“
https://www.dmshealth.com/cerianna-breast-cancer-imaging-agent/
Olma, when something goes out of my control I keep it in the way it is for the best, especially with scans or any health-related appointments. Twice postponed is annoying, I know!
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Hello everyone,
I hope I'm welcome here since I believe I do classify as de novo, even though I went through rapid leaps in my staging:
- Jan 25 - Biopsy results - Grade 3 IDC - Stage 2a
- Feb 8 - Unilateral mastectomy, axillary node diss. 7/7 nodes, tumor a whopping 14 cm! - Stage 3 (I just assume this cause of the size)
- March 3 - Liver ultrasound showed lesions (at least 6, the largest being 2cm), liver enzymes are normal - Stage 4
I am currently 18 weeks pregnant (was 12 weeks when diagnosed) and therefore cannot undergo more testing other than the chest xray (showed clear) and abdominal ultrasound I already got. When I discussed the liver U/S with my oncologist, she said that my case will be considered MBC due to the liver findings. She said we won't do a biopsy because she doesn't want to risk me getting a fever/infection and having my chemo postponed. I start chemo tomorrow, which is a relief. I am praying hard that the notoriously harsh AC does its job.Many people have such varied cases, and sometimes I feel like a unicorn with my circumstances. But I'm finding most comfort in discussions about MBC and even more so de novo. I feel like I was never really early stage and only feel a bit fortunate that I'm at least asymptomatic so far. Holding on to hope that the spread has been minimal and will be curtailed by the limited treatments I can get until I deliver.
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handmaiden, welcome, you certainly have a lot on your plate! My heart goes out to you and your family.
To try to find the bright spot in a pile of trouble - the consolation of having a grade 3, HER2+ cancer which is considered aggressive is this - higher grade cancer can respond well to chemo because chemo is looking for the rapidly dividing cells. The higher the grade, the better the target for chemo they are.
So hopefully the ACT is gonna put a nice dent in those tumors. Even without any other treatments. Hang in there and I will be praying with you.
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Maria (handmaiden).
I'm sorry to find you here but you'll receive a lot of wisdom and support with the ladies on this thread. Hopefully you have a supportive medical team, sounds like it is going to be a balancing act with your treatment. Hugs and prayers...
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Handmaid,you are most certainly welcome to this thread, but I was taken aback when you said you’re 18 weeks pregnant. I’m so sorry you have this crap disease and while you’re pregnant. My daughter is 31 and had my grandson 19 months ago. I don’t know if I could have handled her having cancer, let alone while she was pregnant. Please come back and update us often how you’re doing. My arms are wrapped tightly around you and that precious bundle you’re carrying, as well as your other son and husband.
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Handmaiden, so sorry you've landed iin the group no one wants to join, but glad you've found us here. There are lots of very knowledgeable ladies (and gents) here. I'll be praying for you and your family.
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a good comparison study of the 3 available vaccines:
It explains why 7 days off medications for us recommended.
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Thank you for sharing, Snow-Drop.
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Handmaid-you have so much on your plate and you will be in my prayers.
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Just checking in and thinking about all of you. Tomorrow ends my 2 week break from Ibrance. I know folks may be on different treatment but perhaps your Mo discussed having a break if you decided to obtain a Covid vaccine. I finished up my 2nd dose on 3/15. Had a few adverse side effects but also something wonderful happened. I received my lab work results this afternoon from this morning, I was in shock. I was in disbelief that my numbers (ANC, WBC and RBC), were in the normal range. I haven't had this happen since starting treatment.
So I was wondering if it's reasonable to take treatment breaks before numbers get so bad and you feel like Shi$? I'm not sure what my cut off would be, but taking a week or 2 off every now and then doesn't seem unreasonable, but on the other hand the fear of progression. Has anyone took a break without involving your MO or perhaps the MO encouraged it, but not because it was a critical lab value. I'm regretting going back on treatment tomorrow but enjoyed these last few days...
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Tinkerbell, I was on Ibrance for 3 years. I always had low counts in my WBC's. I used to do 3 weeks on and 2 weeks off with Ibrance, even on the 75 mg dosage. Palliative care means I can decide to take time off, if I want to. I always informed my MO, though, and wouldn't try to do that without his knowledge. He needs to know what I'm doing in order to give the best care.
Lots of patients also take time off from their regimens to do other things, like get a surgery, take a vacation, or just to mitigate their side effects.
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I'm so very grateful to have found this thread. I'm still somewhat in the final diagnostic stage, but pretty certain I have de novo Stage IV BC, ER+, HER2-. It's been a long journey. Started with pains in ribs Jan 1 2020 which sent me to urgent care, they did x-ray and a number of other things, said it was muscular and sent me home with muscle relaxers and NSAIDs. It got better for awhile but returned, I went to the clinic that served as my primary in July, and was given more pain meds by resident. Fed up, I found a new primary who did an x-ray that found a compression fracture T6 in Oct 2020. Sent to spine specialist and had DXA order that didn't get done until Dec.….everyone was convinced it was osteoporosis until DXA showed up normal (actually spine guy continued to hold to osteoporosis dx despite DXA). By then I had 2 more vertebral frax and what felt like (and was) rib frax and begged someone please to consider an actual diagnosis, so primary did basic work up for myeloma. Did find minor M-spike on SPEP for that, so I went off to hematology, a series of imaging, MRIs, PET/CT with reports all indicating likely myeloma. But this was not confirmed by a series of suboptimal bone marrow biopsies.
I have been worried about the possibility of MBC for over a month while in the midst of this inconclusive chase for myeloma, as one CT showed a dark area in my left breast near some suspicious looking lymph nodes. But no, hem/oncchasing the myeloma said, you had a negative mammogram last Oct. (I have 3D mammograms yearly), and anyway if it is anything breast related it will show up in the upcoming PET/CT. PET/CT report didn't mention a thing about the breast (though widespread malignancy throughout the bones) so I breathed a sigh of relief on that score and continued learning about myeloma. Meanwhile a bone biopsy was ordered to test one of my many, many lesions since the bone marrow biopsies had been inconclusive. Onc called two days ago to tell me report looked like metastatic breast cancer and he wanted me to know before I saw report as he knew I would be upset. I was.
As my bone pain throughout spine and ribs has been getting worse I have been in fear of how aggressive this must be. I had searched the internet unsuccessfully for any forum about de novo Stage IV. You all are incredibly inspiring and also real about the sheer incomprehensibility of this kind of diagnosis. Also, as another newbie said, seeing "I'm stable after x years" is heartening, as I try to refigure my life, all the things I've imagined accomplishing before retiring and doing with my beloved partner and two adult daughters in retirement. Slowing down to focusing on today, maybe tomorrow.
I am curious about a few things. What is NEAD or NED? And I'm a bit surprised at how many stories feature Chemo toward the beginning of treatment, even for ER+ BC….I thought starting with hormonal therapies was standard? I have also been relieved to hear that treatments have actually shrunk tumors in bone mets and relieved pain….from what I had been reading, I was a bit afraid that treatment would only stop cancer from going beyond its current state. I imagined being stuck with my current back and rib pain, seriously diminishing the travelling and hiking I'd like to continue to do with family and friends.
Thanks again….I wish I could call out all of you individually but I've sort of been drinking it all in. I do especially connect with illowen's, ChathamLady's and SondraF's descriptions of bone met pain and what helped. Really appreciate all the discussion of rads and hope to discuss this with oncologist when we meet next week.
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Prairiesea,
I am so sorry that you've had such a struggle over the past year but I am so happy that you found us. You will find a lot of great information from a lot of wonderful people here. I am fairly new with my diagnosis and am having my first scan next month since starting treatment (fingers crossed). I'm sure others will be able to answer your questions more fully than I.
NEAD means "no evidence of active disease" and NED means "no evidence of disease". From what I understand, chemo may be given at the beginning of treatment for ER+ if there's a need to hit the cancer hard, such as when the person's in visceral crisis. Hormonal/targeted treatments can definitely shrink tumours. My primary breast tumour is much smaller than it was at diagnosis. For bone mets, radiation can do a lot to reduce or eliminate the pain. As you probably read in my earlier post, I had radiation to 2 of my back mets. My C7 is completely pain free (this was by far my worst spot that also required stabilization surgery).
If you haven’t already, make sure you check out the Bone Mets Thread. You will find tons of great information and support there.
Let us know how your meeting goes next week and if you have any further questions, just ask
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Thank you Ilowen, this is very helpful,
I wish you the best for your scan next month!
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