De Novo Stage IV
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hi eastcoasttowestcoast. I mostly just read here because I've been spending all my typing getting out frustrations on the covid thread. It IS all very frustrating. I am pretty sure most of us have so many"what if's".
I also had to look up de novo. My Dr. never said it. I remembered recently that at the beginning of covid I desperately needed new bras. DESPERATELY, like they were all years old, but lock down happened, so I dealt with it. One icy,windy day we were bundled up for our 1.5 mile walk to my youngest's weekly park date with best friend. My boob was so itchy. When I got home I discovered a little indentation, and also that my underwire had broken near that spot. So I went on never thinking about the indentation, assuming it was from the stupid bra I kept wearing. Just now I remember that at some point I was thinking in passing that it was funny that after a shower I thought I was dry, but my nipple was still wet. A few months later in the summer I noticed the dimpling when I was putting on deodorant. That was what prompted me to call the Dr. But it was late summer 2020 and check ups were backlogged as things were slowly starting to reopen... then school started yes/no/yes/ no which also affects my job, then holidays, and people who brought covid back to school with them and spread it to us...What if: i realized the indentation was there before the bra broke? I realized that it may have been discharge not water? I had pushed harder to get an earlier check up? I pushed harder to get earlier mammogram (it was 20 months between, so nobody was too concerned). If I didn't teach that day the sick kid came? What if the mask rules hadn't been relaxed that very week? Maybe all combined it would have been diagnosed 4 or 5 months earlier? Would that mean they'd be no Mets? I don’t know if it would have made a difference and even if it would have, its beyond that now. Letrozole/Ibrance/monthly xgeva since April. Mastectomy on Monday, Rads next month.
I am now seeing what many others here say about "pink". I was under the 2yr timeline recommended by dept of health, and not too much over the 1 yr recommended by cancer.org.
It all DOES suck, but you did nothing wrong.
Shout out to sondraf. Thanks for inviting us to commiserate.
Also, loads of helpful info hidden in all these threads.
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EastCoasttoWestCoast, thank you for sharing your story. I’m sorry you are here for cancer, but I’m so glad you found this thread. I am 60 now, and reading my story, you know I was not diagnosed for a very long time. If I was, I would have been diagnosed at 52 with it everywhere in my spine, which means it had been there for many years before it was seen. I am sure it started in my 40s. I say this because I am still here, even though it’s now in an organ. There are many who live with it for many years if it stays in the bone. I am one of the odd ones who is also occult, meaning it was never found in my breast. I had no idea. It’s still never been found.
I try not to bring my story back up when responding, but sometimes my wish is that by doing so, it gives someone comfort and hope in knowing I’m still here and living a good life. This is so new, you have a right to your feelings. It’s such a blow to be told you are de novo. We look back and try to see what went wrong in not finding it sooner. I think a lot of us put on a good front to the outside world.
I am sending you hugs and thanking you for coming here and introducing yourself. I hope you feel comfortable enough to come back and let us know how it’s going and to vent any time.
DanceMom, I want to thank you as well for your story. We all do have one thing in common, and that is wondering how this happened and we didn’t catch it sooner. Please come back and tell us how you’re doing. I have not had a mastectomy. I’ll be thinking about you tomorrow. Hugs to you as well.
Also, we have a Zoom meetup on Mondays at 2:00 Eastern if you are so inclined to join us. It really helps to meet online and see we’re doing well. They just started another one on Wednesdays at 4:00 Eastern too. I haven’t gone to both but will go on Wednesdays if I can’t make the Monday meeting.
I’m with you in the shoutout to SondraF. You are appreciated, Sondra.
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Its so easy with de novo to get caught up in the "what if?" game and I certainly indulge in that from time to time. I chalked up tiredness/depression in 2018 to awful work stress and not recovering well from it. I would swim a few times a week or workout and was always putting boob in and out of a sports bra or a swimsuit, and in gym showers with soap and never felt it because of how the tumor grew. I would check now and again and lift arm and see a vertical line, but big deal, it looked like a stretch mark and my old reduction was due for a lift anyway. Maybe if I had listened to all those thoughts floating through my brain from 2016 and done anything - seen a plastic surgeon, taken advantage of the mammogram offer through private insurance, figured out the GP thing here sooner, maybe this would have been caught sooner. But I have never known anyone with bc, and the messaging/testing here is all very much its a 50+ disease that it just never twigged with me at ALL.
East - Im glad you were able to come join the thread, it really is nice to share with this special group of ladies who "get it" with de novo and the absolute turmoil that diagnosis throws your life into from the start, not to mention having to sometimes educate others, even doctors, that yes, this really IS a thing and yes, thank you, it DOES suck.
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Since i started talking, I want to say thanks to everyone for all the brain farts and impossible lids antidotes. I lose my glasses regularly, (I was chalking it up to them being relatively new...2 years later), arrive home from the grocery store to annoyed family because inevitably I forgot something important, lose my phone constantly...now I lose my words too. It makes me feel better to know its real. I'm not just playing stupid.
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DanceMom, It’s definitely real. I didn’t notice it too much on Ibrance, but I definitely notice it now on Xeloda. I have to make notes and reminders.
SondraF, we were diagnosed close to the same time, me in May, you in September. I know it has gotten a little easier for me to accept, I think because right now I’m feeling okay. I try really hard to not think, oh, that could have been my last Christmas, but it sure is hard to keep those thoughts away. I work hard at it, especially when I’m by myself
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Welcome eastcoast and dancemom, it generally does get better, especially if you can say goodbye to your old life and create your new one.
Regret is normal but mostly useless. I had my 1st mammo, which was all clear, 2nd one was 18 months later and only 5 days after finding the lump but it was already too late.
I’m a pretty happy person but we all get those dark thoughts busting in out of nowhere sometimes. I suddenly cried watching fireworks Friday night. Everything was fine then boom! (These might be your last fireworks), WTF?! I don’t actively think like that but it just popped in my head, my brain is just a jerk sometimes, ugh.
Wishing you all the best of everything 😁
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EastcoasttoWestcoast - What a horrible birthday present. It's terrible to get the diagnosis but getting it on or near an important day to us makes it a little worse. I got my diagnosis on my son's birthday.You, Dancemom, and I were all diagnosed this year, I see. I can still feel my own feelings in everything you're saying. Besides regretting me not questioning signs more, I also blame covid for delays. The what-ifs suck for everyone with cancer but I can't help think it eats at us de novo folks even more.
I'm sorry you're here too but glad you found us.
KBL - Thanks for starting this thread. It has been so helpful.
Although I'm still new to this, I had that "sudden *boom*" feeling this morning that illiemae described. We took my son back to the airport. I didn't cry when we dropped him off but as we drove away it suddenly hit me...I don't know how many times I'll ever get to see him again. He only gets leave a couple times a year and lives on the opposite side of the country. When I take the number of years I might live times two, it's very sobering. I'll hope he gets stationed closer to us sometime soon.
Thanks to all of you for sharing your experiences!
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kris_2000, I feel I get so much from all of you, so I’m glad I started it too. It makes me feel like we’re not alone. The learning curve is crazy, but as we learn, we can share. I'm so sorry your son lives so far away. My daughter lives about a half hour, but she’s going to be moving to northern Georgia in a few years. When that happens, if I’m still here, we will move to northern Florida but still be 5.5 hours apart. That will be hard. I’ve gotten over eight years with my cancer and over three with it in my stomach, so my heart tells me I probably won’t be here then, but I’m feeling good now, so I try to stay in the moment. I hope you get to FaceTime or Zoom with your son. Hugs.
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KBL - I'm glad you have your daughter close now. When she does move, are you staying in Florida for either retirement benefits or your doctors I'm guessing?
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Mae (illimae) - I woke up this morning drenched, and I thought of you!. I didn't have any popsicles on hand, but I had to get up anyway. (For those who don't know illimae prescribes popsicles for night sweats.)
Dancemom - I am fortunate enough to be able to use OTC reading glasses. I buy them 5 at a time on amazon.com, and I place them all over. One in front of me, one in my purse, one in my car, one in the bathroom, etc. Forgetting other things including simple words, that's something else!
Kris (KBL) - I am hanging in there with you. I know how much your grandson and family specially if close by.
All the rest of you guys (you know who you are), nice to hear from you in 2022!
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amontro, ha! I had my last popsicle the other night. I don’t often need them during colder months but will get a “refill” to have on hand, just in case. They do the trick, have no interactions and are a nice little treat too
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Kris_2000, no, we bought 10 acres the year I was pregnant for my daughter, which was 1989. My husband probably would have moved there back then. Lol. Anyway, in 2016 I said let's build our retirement home now instead of waiting until retirement. We had an RV on it for many years. I hated staying in it. We had no power, so we always had to have a generator. My husband calls it his happy place. He goes more than I do because I want to stay close. I am one of those parents who jumps to help my daughter at any time with my grandson. I know she appreciates it. I want to continue while I still feel good. My daughter and her husband may move into our house and sell their house before their Georgia house is built. I told her I would move up there if they want to move in here, as long as I have a bed and can come back and forth. I would keep my doctors here while up there. It's only 3.5 hours from here. The practice I go to here does have an office in a town 20 miles away up there, but I like it here for now. It will be hard to be over three hours away, but I will do that for them so they can get rid of a house payment.
Thank you, Anna.
Hope to see you both on Zoom tomorrow and Mae
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KBL, I have scans tomorrow but should be able to pop in after the nuclear injection but before the bone scan, I just may have to duck out early.
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Mae, I miss you when you’re not there, so. even if it’s just for a little bit, that would be great. Good luck with the scans. Please report back when you get the results.
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Hi ladies - Thank you all for the warm welcome!
Dancemom, thank you for sharing your story of findings. Like illimae said, regret is useless but hindsight is everything. Its amazing reading stories of things that seemed so inconsequential at the time...I can also report the forgetfulness is a thing on Kisqali as well. Im not a forgetful person by nature but my brain has moved out and has been replaced by Swiss cheese! I also forget words sometimes which really bothers me. Mid sentence type stuff. Best of luck on your mastectomy tomorrow, I'll be thinking of you.
KBL, your story is memorable to me and I think I saw other posts from you, or possibly on this thread before I actually read it from start to finish because I remembered your story when going through this thread. To not have any imaging tests pick up your cancer is really something..We went whale watching a few days after Christmas and I was thinking how the ocean is like my body..things percolating underneath the surface sight unseen..except for when I am scanned..so, I can't imagine. Since I just had my first progress PET last week, I realized Im ok w/ the scan, and everything leading up to it, but the waiting for the appointment and results is when my mind just won't stop. Thankful my appointment is tomorrow, even though from scan to appointment it was less than a week, it feels like a very long week. Thank you for the Zoom invites-Im working during those times but eventually I would like to pop in and put faces to names.
SondraF, you basically diagnosed me
I'll never forget reading your reply to my post to my husband..and reading it over and over..and then looking up de novo and realizing I was dealing with much more than I thought. Thank you for your kindness and for sharing your story here.Illimae, I cried reading your post about your occasional dark thoughts and your fireworks cry. My brain is a jerk sometimes too!! I get these bouts of sadness probably too often. Im very matter of fact, but these facts are just sad..Christmas wasn't so bad but Thanksgiving was a sad time for me. I found if Im out of my routine Im much more sad. If Im home, working, living regular life, I do much better. Good luck on your scans tomorrow.
Kris_2000, by the time I got to your post, I cried some more! Im a mess! I don't have children, but my brother is 10 years younger than I am, and I definitely raised him, he is the closest to a child that I have. He lives in Colorado, and we see each other several times a year. I related to your airport drop off story, I hope your son is able to get closer to you too.
Amontro, my hot flashes are horrible. I don't complain about them to anyone but man oh man..the worst. Im currently dealing with itchiness which I didn't know was a s/e of the Kisqali until I looked it up. I've had it for the past few months but def seems to be getting worse. Im trying to not itch to cause scratches, etc. Im going to ask MO about any anti itch lotion recommendations, does anyone have any by chance? Its my arms and legs..which is mostly my entire body!
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Thank you, EastCoasttoWestCoast. It's been quite the journey, but I'm in a good place at over eight years in, so I'm more appreciative than mad now. I do have sad moments, though. I like your whale-watching analogy. I'm sorry you can't join us. Hopefully some day. I usually get my scan results within a day loaded to my portal. I hate the waiting. A week is excruciating. Hugs.
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nice to see this thread active again. I hope everyone had an enjoyable and peaceful holiday season. I am looking forward to the New Year and seeing my first grandchild born a couple of months from now. I am going to be moving closer to my kids so I can enjoy them and help out where needed when possible - I can relate to your desire to stay close to yours, KBL. Logistics with MBC are complicated, I will have to change doctors and insurance, but I am due to go on Medicare soon anyway, I hope I can make the transition as seamless as possible. And I hope I can keep getting PHESGO, it has not been easy to discover which plans are willing to pay for it. I won’t like going back to the IV pole every three weeks, if it turns out that way.
Hugs to the new people, hopefully the emotional upheaval will subside as you adjust to “the new normal”. Sorry to anyone who hates that phrase - it is what it is. I admit, I was not a fan of the Ibrance ad that used it.
Hoping for smooth sailing to those going in for scans this month. I am not due til March.
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Oh, Olma61, I'm excited for you. I had no idea how much I'd love being a grandma. It's so much easier than being a parent. I can play with him all day long because I don't have any other responsibilities when I'm with him. I played a lot with my daughter when she was little, but I have to say with all the other things that had to be done and having to work, it wasn't always easy. Whenever Mom and Dad come home or before they go anywhere and we're playing, he'll say “Mommy, go," or “Daddy, go." He doesn't want me to leave. We have so much fun. It's awesome for my daughter because she never has to feel guilty when she leaves him with me. I had no one but me and my husband. His mother worked and never watched my daughter, and my mom was a few hours away. I'm so glad I can help, and I'm so glad you get to move closer. I will say the timing was perfect when he was born. He's kept my mind busy with other things. They sure do grow up fast too. Yikes.
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thank you! I cantwait! My niece just had a baby too and my sister and I went to spend some time with her, it was so nice and her son is a doll! So grateful to be able to spend this time with the younger generations of our family
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Wow! It's great to see this thread so active again. Welcome to the new contributors.
Dancemom - I wonder if it could be stress that is contributing to your Swiss cheese memory and trouble with word recall. I have noticed these problems at particularly stressful times in the past and had a lot of trouble right after diagnosis...to the point that my MO ordered a brain MRI (which was clear). I have since retired from my very stressful job and adjusted, somewhat, to my dx, so things are definitely better.
I've been mostly MIA for the last few weeks. We completed our move to Texas and I promptly came down with the flu. This is the first year in literally decades that I haven't had a flu shot - I just couldn't quite work it into the whole move schedule. Ugg - I paid for that procrastination with 5 days of misery. I'm feeling better now and need to make some serious progress unpacking!
KBL - I love how much you enjoy your grandson and that you have so much opportunity to spend time with him. That's very special.
Olma - congratulations on your almost‐here grandbaby. How exciting that you'll be close by!
My husband and I will celebrate our 35th anniversary this weekend. It doesn't seem possible. We have plans to check out a steakhouse not far from our new home. Then, my daughter will be here in about 3 weeks and will be living with 2 hours of us. That's a lot better than Florida to California for the last 3 years. I'm so excited!
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SeeQ, so glad your move is finally done, but I’m sorry you got the flu. With all the moving and stress of that, I’m sure your immune system wasn’t great. Happy 35th anniversary. I hope you have a great meal to celebrate. Yay that your daughter will be closer.
My husband is not available this week to help me watch my grandson. My daughter had to ask me if I could watch him Wednesday, possibly Friday all day, and part of Saturday. She feels so bad. It’s too funny. I keep telling her I feel good. Now is the time to ask. I appreciate that she worries about me, but I love being with him and he loves being with me.
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Seeq, congrats on the anniversary 🎉 and where in Texas did you move?
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seeq and klb congrats.
Sorry on kids moving far. I did that to my parents. I'm happy my daughter is here to help me this week.
Yes, stress does affect memory too, maybe I'll find my glasses now that this big thing is done. Thank you all for the good thoughts!
Surgery went well, a million drs checked me this am including my 2 primary surgeons very early this am after I finally fell asleep after all the iv antibiotics, blood pressure and temp checks, wound checks drain checks all night. I forgot you can't sleep in the hospital 🤣 . I feel much stronger now. I found out a college classmate/neighbor/mom- friend (our oldests went to preschool together) was also having surgery yesterday. We had same BS but hers was less involved so she went home. Her husband saw us, but we didn't see him. I'm glad she wrote to me after😁
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Hi there! New to the forum and glad to get to connect with others. Mom of two young children here, diagnosed after having back and hip pain. I was living in the Western Balkans at the time (Albania) and it was SO EASY to schedule an inexpensive MRI ($50!) there to see if I had a slipped disc. Without access to that diagnostic tool, I'm not sure when I would have been diagnosed. Dense breast tissue meant that it was incredibly difficult to trace the cancer back to the breast, but here we are. I quickly returned home to the US and started treatment, for which I'm super thankful.
Anyway, glad to be in such good company and so thankful to be living a normal-ish life!
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Dancemom - glad to hear your surgery went well. Wishing quick and uneventful healing for you. It sounds like the pendulum is swinging towards mastectomy for Stage IV - at least in some cases (oligometastic? De novo?), as I seem to be hearing more cases lately.
Welcome, Mexhay. I'm glad you had easy and affordable access to diagnostics, but sorry you had to join the club no one wants to be in.
KBL - your daughter sounds sweet. Oh - I am also the youngest of many children, but I know it will saddened my mom when I left the nest and moved cross country. I have no doubt your mom felt the loss, too.
Mae - I'm in north Texas, a couple hours from Ft Worth.
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Kris_2000 - I forgot to ask. What branch of service is your son in? My son is Army, previously USMC. We are a retired military family (Navy). I usually only get to see him about one a year.
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DanceMom, I’m so happy your surgery is over and it went as well as it could. I’m glad you got to connect with your friend. I hope you get home quickly.
Mexhay, welcome to group, although I hate that you are here at the same time. I cannot stand when anyone has this crap disease, but when I hear “young children,” I just have no words. I hope your treatment is going well.
SeeQ, my mom couldn’t get away from me. I called her almost every single day. My daughter is more like her dad and a bit more independent. I was texting her every day. Hahaha. She has a job now where I try to leave her alone because she’s so busy. I am independent for the most part, but I do miss being with my daughter more
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Welcome eastcoast, dancemom and Mexhay to the De Novo thread. I read daily but haven't been able to respond until now. I've been on pins and needs waiting for the results of a Brain MRI. SIx months after being dx with de novo, I started to have bouts of vertigo and slight tinnitus. Unfortunately, a brain MRI was not part of my initial work up. I emailed the MO who ordered the Brain MRI. With much surprise I was diagnosed with a vestibular schwannoma, benign brain tumor from the inner ear. Typically, these tumors are slow growing. I now receive annual brain MRIs. Received my news this morning, No new growth. Yippee. Currently I'm in the watch and wait pattern. The reason I'm bringing this up to the group with persistent or unusual symptoms that are not your baseline bring up to your MO asap to rule out a new dx.
Good luck with folks having scans for the month of January.
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That's great news, Tinkerbell!! The emotional rollercoaster & build-up pre-and post-scans followed by the beautiful simplicity of good news is hard to explain to people outside the cancer-world. Glad to hear this round went so well.
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yay Tinkerbell!
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