De Novo Stage IV
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Philly- Hi !!! Welcome back !!!!! Though not with your current circumstances. I cannot give you advise as I had a mastectomy on the affected side at the beginning of my diagnosis. Sounds like it very well could have changed HER 2 status. Good you are having surgery now.
You were on I/L with the bones. With the CT and MRI showing multiple liver lesions, but PET not lighting up, what treatment have you been on?? I know that will probably change now with the aggressive tumor in the breast and the pending biopsy results.
I wish you well and will pray for you. Keep us posted. We care.
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Hi,
I am age 34. De Novo Stage IV.I had multiple lumps in my left breast since childhood and was continuing a yearly scan since 2017 which shown them stable and benign, tbe lumps were non painful. Married in 2011 I have total of 3 kids. In March 2019 I was blessed with a baby girl (my 3rd kid). In January 2020 During feeding my kid, i felt bleeding from left breast. I went to breast clinic who saw my history and performed a surgery to remove lumps. Histopath of removed ducts and lumps was conducted and showed B2 Bengin. During Covid I could'nt visit Clinic for follow up. In Oct 2020 I visited clinic and told them that the breast has hardened , they told me its post operative changes. On 27 January 2021 I again visited as there was a red rash with itching on Lt Breast. Doc said it was inflammatory breast cancer. My Biopsy showed a Grade 2 tumor with ER+ (100%) , PR+(63%) , HER2-ve (by FISH). Bone Scan Showed Mets in Right Hip joint and some Vertaberal Portion and 1 rib and Rt Shoulder. CT scan showed all vital organs clear.
I recieved my 1st dose of Hormone therapy Tamoxifin Pills and Zoladex 3.6mg on 8 Feb 2021. After bone Mets were confirmed thru Pet scan (T4b , cN1, cM1) , on 17 February, 2021 I have started Kisqali 600mg (3x200mg daily). I have taken time from Radiation Onco for Ovarian Ablation in some time.
I am 34 years old and 3 kids (Son age 7, Son Age 5 & Daughter age 2). My morale is high and I am committed to defeat this for my family.
Need prayers and Motivation
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Hi, Prayers. Sorry for the delay in writing. I'm so sorry you're joining this group and having to do so at such a young age with young children. I hope you have a great support system and people to talk to. After being diagnosed, this has been a forum I can come to and connect with people like me. People may not understand what you're going through, especially if you look healthy on the outside. I hope you find great comfort and hope in this thread and the other threads you visit. Hugs.
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HUGs KBL, I am a firm believer , and in High morales. With the Will of God , I am Committed to defeat this for my Family. Best wishes for you and your family too dear.
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Prayers, I had the Tamoxifan/Zoladex combo when I was first diagnosed. It shrank my primary tumor by 50% and stopped the mets from growing. I was stable on that for two years, with very manageable side effects. This board was very helpful for me (and still is), for finding others who know exactly what it's like to go through this. Welcome to Cancer Club, the group that no one wants to join. We are here with answers or just an encouraging word when you're confused, angry, sad, or when you just got great news. We're here for that, too. Welcome.
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Hi, I was diagnosed 4.5 months ago and this still feels new to me. Leading up to diagnoses, I had months of declining health, with the main issue being horrible back pain. I saw doctors for my back, swollen lymph nodes, pain in my side (now I know it was my liver), blurred vision... all of which was misdiagnosed until an MRI finally revealed innumerable tumors (and compression and some fractures) in my spine. It was truly a horrible summer leading up to diagnosis, followed by a very dark month(s) after I found out it was cancer. I was breastfeeding at the time and had mistaken the lump in my breast for clogged milk ducts, which I have always been prone to. I have struggled with guilt and self-blame for not suspecting it was cancer sooner.
These boards have given me some hope on my darker days. I am trying to stay optimistic and fight the feelings of 'doom' that sometimes overcome me, especially because my cancer is so extensive (spine/sternum/ribs/hips, liver, lungs, brain).
My brain mets responded well to SRS radiosurgery. I've completed my first six cycles of chemo and am waiting to see results from recent scans.
I am 37 with a loving husband and two amazing daughters (ages 2 and 5 at time of diagnosis).
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Superdenovo, damn girl, I’ve seen so many of us younger ones find out about MBC while nursing. This totally sucks but you’ll find really good people and hope here.
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Superdenova: Just wanted to offer support and send healing vibes your way. I dont have HER2+ but there are several folks on this thread, who can offer advice and positive outcomes with treatment..
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Prayers up for SuperDeNovo and Prayers-2021 and all others just joining the MBC crew. 🙏🏼
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Welcome, SuperDeNovo
We're so sorry you find yourself here, but we're glad you've found this community of amazingly strong people. We're all here for you.The Mods
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Superdenovo - I had a similar crappy summer in 2019, I'll never forget it. The back pain especially and then to find out it was caused by metastatic breast cancer! Like what? When I was in hospital due to a sacral fracture just after diagnosis there was a 39 yr old young mother on the ward as well, who had also pulled the "full house" as it were. Listening to her trying to manage her young kids and be a part of their lives, and her husband trying to find time to visit, it sounded extremely challenging to juggle this diagnosis with treatment and small kids.
We are glad you found us and hope you stick around!
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SuperDenovo, I just can’t even imagine your struggle. I have a 31-year-old daughter, and I’m so worried for her. I am so grateful I’m the one who’s dealing with this and not her. I hurt for all of us in this situation, but I really hurt for the young and the young with small children. Looking back, I’m sure my cancer started when I was in my 40s, but it was so slow and wasn’t causing issues like yours and others’ did, so I had the privilege of not knowing. I am sending you a huge virtual hug. I hope this forum helps you and answers any questions you have.
There was another thread where they were talking about when do the cancer thoughts leave our mind. It never leaves my mind, but with my grandson, it helps me out the thoughts in the back burner. I hope your children do that for you.
Please make sure to come in and update us here with how you’re doing.
Hugs to all.
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LoveFromPhilly - this is the 3rd BC for me, twice left, then R-axilla. DR is positive that each one is a new cancer, and that the treatment for the first two worked. When I had the bilateral, the right breast was checked, nothing found. I was on Ibrance/Arimidex for 15 months. Tumor seemed to be shrinking, but then exploded and spread all over through the lymph ( I have lymphedema, DR said that using a pump and compression did not cause it to spread). Nothing in the organs so far according to the PET, but now concerned that could change. DR took me off Ibrance/Arimidex and is now recommending Exemstane(Aromasin) and Everolimus(Afinitor/Zortress). Cancer highly ER+ (85%). As I look at the CARIS report for the 600+ biomarkers, why are so many indeterminate? The Everolimus somehow "boosts" the Exemestane, but has a very scary warning list. What has your DR suggested to take instead of the Ibrance?
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illimae/tinkerbell/javajana/olma/mods -Thank you so much for your replies and your well wishes. It means a lot and makes me feel less alone.
sondraF/KBL - It is definitely a struggle with my young kids, especially with covid keeping them out of school. I cherish my time with them, but do I think they (and my husband and I) will benefit from a little space once they are back in school.
My back is a mess and it's still hard to manage the physical side of things, but the biggest struggle has been emotional by far. I dream and hope that I can somehow make it until my youngest turns 18. Although if that comes true, I am sure I will want more time when I get there.
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Hello everyone. I've been lurking around here since my MBC de novo diagnosis 4 months ago. These boards have been a lifeline and I'm so glad I found them so early. Even though you didn't know it, you have all helped immensely while I've navigated these early months.
Back pain was the first clue that something was off. It started off mild but kept slowly getting worse. I noticed a small lump in my breast right before we left for a vacation so I planned to see my doctor in a few weeks when we got back. Well, during the vacation my back kept getting worse and worse. I blamed it on the mattress and couldn't wait to get back home. Once home, my back went from bad to life-altering as I waited for my doctor appointment. Several mornings, I could barely get myself out of bed and then one morning I couldn't get myself out of bed due to the pain. Every time I moved any part of my body, my entire back would spasm into a solid mass of pain. Even moving my toe set it off. I don't know how we managed it but DH and I finally got me into a standing position and off to the ER we went. Not much help there but they gave me a powerful muscle relaxant so my back wasn't able to spasm effectively anymore.
Finally saw the doctor and an ultrasound confirmed breast cancer in my breast and nodes (ER+/PR+, HER2-). By then I had also developed numbness/tingling and mobility issues in some of the fingers of my right hand. I had to wait 3 weeks for a CT and then another 2 weeks for the results due to an error at the hospital. During those 5 weeks I was left to my own devices with my back. The pain was so bad all I could do was recline on the couch. I couldn't stand for more than 2 minutes without the pain exploding. A trip to the bathroom left me on the couch panting in pain for an hour. When the CT results finally came in, the reason for the pain was abundantly clear. I had mets to my bones, liver and lungs. The C7 vertabrae was fractured and disintegrating with the bones/mets putting pressure on the nerves. I also had a fracture to my T10 and L2. I have to say, the health care system really moves fast when it decides there's an emergency. I was put in a neck brace that night, had an MRI of the spine the next day and was referred to a neurosurgeon to stabilize the C7. I was in the hospital 3 days later and out of surgery 2 days after that. I'm happy to say that the surgery was a success. I'm now out of the neck brace and rebuilding my neck muscles. I still have some mobility issues with some of my fingers, primarily with extension, but apparently it can take 6-18 months to see if that will improve.
After a violent introduction to MBC I am now plodding slowly through the monthly routine of pills, injection and IV. No scans yet but my bloodwork is moving in the right direction so I take comfort in that.
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Welcome! Sorry you have had to join us but glad you did find us and got some comfort and information from the community .
Glad things are changing a bit for the better after what sounds like a very rough time. Virtual hugs 🤗 We are here for you
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Hi, IIwoen. I can't even imagine what you went through for all those weeks. It sounds so excruciating. I'm glad you're doing better. I'm also glad that reading the posts here helped you. Knowing I have so many mets from the top of my spine to the bottom and for so long makes me wonder why some people have fractures and others don't. My tumors are all under a centimeter. Maybe that's the reason.
I hope you continue to improve. Please come back and post to let us know how you're doing.
Sorry it took me so long to post back to you. When I have my grandson, I don’t get to come here as often.
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Your story sounds very much like mine. Fortunately I didn’t need the surgery. 10 rounds of rads shrunk the tumors from T6-9 and the pain is essentially gone. It was a very shocking de novo diagnosis Still processing. Trying to find faith, hope and optimism. These boards help. Stay away from the survival statistics. You are not a stat You are a fighter! You’ve got this
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Ilowen - your story is similar to mine with a baptism by fire situation. Mine was a sacral fracture, after being confused for months about why my back pain was not responding to my usual approaches as I thought it was a sports injury similar to many I have had in the past after a twisting motion. Oddly enough, chiropractic adjustments were keeping me going, which is absolutely frightening to think about. Soon as I stopped those after the mets diagnosis it all went downhill real quick and then they thought I had spinal impingement, etc even though I had been complaining about loss of leg power and feeling like a rock in my sacral joint for weeks. I got whipped into the hospital so fast I couldnt believe they were actually admitting me.
The rads sorted out my sacrum pain pretty quick and it took a few months to heal. My L3,4,5 are white with mets, though thats it. I dunno, they made themselves a little clubhouse down there (where I already had degeneration). Those cause me no pain though.
Keep on plodding and in six months youll feel a new woman!
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Thanks for the kind words, everyone. It’s been quite the ordeal but I’m definitely in a much better place now physically. Because of all the back pain I had been dealing with, I was actually happy and excited to hear of the diagnosis and that they were whisking me away for emergency surgery ... it was such a relief that we knew what was causing the pain and we had a plan of action. It was only later that the real enormity of MBC hit me. Reading the struggles and triumphs of everyone here has really helped me process everything.
KBL - I’m guessing that you’ve been able to dodge vertebrae fractures because your mets are small. My L2 measured 2 cm, the T10 wasn’t reported but has resulted in a 60% height loss so I’m guessing it was larger than that, and the C7 met was massive measuring at 2.5 x 2.6 x 6.6 cm (it was starting to infiltrate my C6 and T1). I guess the little beasts love my back bones.
SondraF / ChathamLady - It’s so great to hear you were able to get everything under control. I had rads to the C6-T1 and T10 which has cleared up most of the aches (still some occasional twinges in the T10 area but hoping that’ll continue to improve). They wouldn’t radiate the L2 because it wasn’t causing me any pain at the time. Apparently we can still function normally with a fractured vertebrae, who’d have guessed?
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welcome to new de novo s! Prayers, Chatham lady, supperdenovo and llowen.
Llowen, your story-somehow- is similar to mine. I diagnosed with BC, then bam...MBC, I was digesting those news one after other and waiting for radiation therapy to be scheduled- took long- that suddenly sever pain in my lower back started then I heard a crack and ended up in er... I got 10 sessions radiation and the pain gone, but follow up mri around 6 months later showed more lesions in T, L and S, and in epidural space as Sondra said they made themselves clubhouse!!! My neuro oncologist was ready to put me on intrathecal chemotherapy- believe me it was a lot to take- RO and MO wanted to give the systemic therapy a little chance, actually RO believed those things in epidural might be inflammation after radiation treatment. thankfully lesions in epidural shrunk and Mets in spine became stable, so I am able to stay in systemic treatment.
I learned a lot from ladies here, we share our experience and suggestions about treatments procedures scans supplements diet vaccine, you name it- which many MOs might forget to tell their patients!
KBL, I am glad you are enjoying having your grandson around, see how this little angel can change the world for you ❤️
Nice to see old dancers checked in as well.
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Wow! A lot of new ladies on the board. Sorry you find yourself here, and about how difficult your journeys were to get here. My mets were found first, via abnormal bloodwork and then U/S and MRI, so really easy, comparatively.
Crossposting an update - I got great news at my MO appt, yesterday. PET/CT scans are totally clear after 7 mos on 150mg x2 Verzenio plus anastrozole. So, no change in treatment, just fewer appts and longer time between scans. Happy dancing over here.
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It’s eerie the similarities that some of us have experienced but also comforting. I’ve gotten a lot more relevant information from everyone here, especially by listening to your personal stories, than I have from my MO and GPO. You have all been through it and seem to know what others need to hear. To us it’s personal, not clinical
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Ilowen, welcome, as you already see, you will find a wealth of info and support here.
Hello to everyone. Nothing new with my, just a pop in to say hi.
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Hi, Mae.
Illowen, I'm sure that's the reason.
Snow-drop, I don’t know where I’d be without him. He has changed my world for the better. I love my family, but he’s been a great distraction and a wonderful joy to be around.
See-Q, that’s so fantastic Congratulations I’m so happy to hear your good news0 -
SeeQ! You give me hope to get to Ned again. I was Ned for almost two years after having one tiny liver met. But now I have multiple. I wanted to try verzinio but had to go the IV route to start . Love seeing your news
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See-Q congrats o your good news! It s great to be able to ease up and space out the appts a bit, right?
Monday is my PET-CT appt, hopefully it won’t be cancelled again. Hoping for another good one with no change in treatment 🙏🏼
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llowen - sorry you are going through so much, had to wait, and hope that treatments reduce the pain and control the MBC. Sending hugs
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Hip! Hip! Hooray!
My two year cancer-versary is this month-- and, my most recent February 2021 PET scan (my 4th) says "No evidence of FGD avid neoplasm. No detrimental change from prior exam."
My blood markers are "normal" too (for whatever that's worth).
My recent colonoscopy was also clear (no polyps this time).
Both of my cataracts were removed last month--I now have excellent distance vision for the first time in my life (and am much less of a danger to other drivers on on the byways and highways).
I've had both of my Covid-19 vaccinations (Pfizer; no reactions) and have completed the optimal waiting period afterwards.
In summary, for the first time in two years, since my De Novo Stage IV diagnosis, and the 2020 pandemic lockdown, I am feeling --dare I say?-- optimistic-- for a change.
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Thanks for posting this wonderful update, GlobalGal. I’m so happy for you. I’m celebrating along with JavaJana about your good news.
My 2-years since diagnosis is coming up in a few months. To me, it is such an important milestone because I feel like making it beyond 2 years puts me into the long term thrivers group. I hope everyone else makes it into that group as well!
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