De Novo Stage IV
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De novo from the start. I was told I probably as Stage III but my MO decided to do a PET scan before starting chemo, surgery etc, Late March was when I was told it was BC, April 13 it was Stage IV. Yup - me too - a clear mamo one year before and also told the mass could have been there for much much longer and invisible to the touch or mamos due to density.
Denny123: I have been cheering you for your 20+ years --- you might be pushing 30?!!!
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amontro--my once told me that I might have had BC 8 to 10 years prior to my dx, since I was de novo.
Elserberry-thanks, but I doubt it. Another CT scan coming up and more apprehension. I am 73 and have old-lady aches and pains. I can't imagine another 10 years. But I sure would like to survive tthat long!
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Denny123; if you can hang on for another 7 years and were a Commonwealth citizen you would get a message from Buckhouse. I will be 73 this August and I want my message from the Royals when I hit 100!! Even if it is sent by some poor low level secretary. Ha ha. To quote Canadian writer Arthur Black "I still feel like a teenager except on stairs or in the mirror" ---- well, not exactly.
De novo is a real bitch slap in the face, isn't it?
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elderberry--LOL. I sure hope that you make it! Agree to the slap in the face! I had a healthy lifestyle for so many years. Well, I did my best.....
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hey, all.
I was diagnosed de novo HER2+ stage iv breast cancer to the liver at age 47. My gynecologist had dropped me down to every two year mammogram and in the intervening year, bam. I held a grudge against her for a while but this stuff is aggressive. The symptoms I had were more like gall bladder problems and went on 6 months before official diagnosis. I am one of two in a large extended family whose ever had cancer. My joke is that if cancer always happened in overweight drinkers, my whole family would have cancer. This was just a crappy stuff happens.
Susan
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Just checking in and wanted to see how everyone is doing. I don't get on BCO that frequently based on technical issues. During the weekend there was another problem with trying to get on BCO. There is a wonderful FB group for De Novo folks and recently one was added for under 40 (don't meet criteria, lol).
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Dipping my toesinto bco again. I want to apologize in advance to anyone who finds me offensive, insensitive, etc. If you are one who does, please simply ignore me and skip the nasty pm's. I am who I am and that has always made me a little strange. I have learned to display more typical behavior IRL but it can be exhausting.
- On sleep issues; I actually take 30 mg of melatonin nightly. I also take high THC drops that are meant to induce sleep. Although I still wake earlier than I'd like to, for the most part I sleep well. Overall, I do tire far more easily than I once did. Maybe it's the cancer or maybe simply aging.
- Cancerversary: An exact date is not particularly important to me. I was dx'ed right before the 4th of July weekend in 2011 and as a result of an unrelated PET, my bone met (biopsy confirmed) was discovered. That was about 6 weeks after my September 2011 bmx. Since it was 2cm and grade 1, it's safe to assume it had been there all along. I generally mark the time as being roughly the 4th of July or early summer.
My house is undergoing major renovations and I am staying with my daughters (a week at ones house, a week at the other). Although I am excited about this major home refresh, I feel totally out of sorts living this vagabond lifestyle. My little dog 🐕 is not very happy either but I understand that I am very privileged to be able to undertake such a big project and shouldn't complain.
I hope you are all doing as well as possible but saddened to learn of susansf's passing. Take care
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good to see you exbrnxgrl. Congrats on the house re-do.
You and I might be alike. I have a dark, sarcastic wit that doesn't always sit well with everyone. Like you, I'm a good person who means well. Glad to see you here.
Susan
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Thanks gonegirl. I am neither dark nor sarcastic but I do believe I am on the ASD spectrum. Very high functioning and not obvious but my emotions and feelings are very often quite different than most people. I was also an extraordinarily shy (yes, social contact was physically painful!) child who learned early that that was not a good thing so I learned how to (superficially) act in a more typical fashion. Doing that for 66 years has helped me function fairly well in society but I am now well and truly exhausted 😩. My awareness, despite what some think, is quite keen as I know I’m different. Never the less, this is who I am and trying not to be me has been exhausting.
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Gonegirl, welcome. I’m sorry you find yourself here, but I’m glad you’ve found us. Hugs.
Hi, Tinkerbell. I’m hanging in there. I moved, so I’ve had to switch docs. So far so good. I have scans on Friday. Sorry you’re having technical issues. It’s so good to hear from you.
Exbrnxgirl, I had read your post about what was going on and was sad you were stepping away. I’m so glad you’re back. I’m sorry people can be so cruel. You are always welcome here.
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Tinkerbell-I am with you on the technical issues. I have to click about 7 places to even get into this thread.
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Kbl. I hope you get good news from your scans
Susan
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Thank you, Gonegirl. I’ll keep you posted.
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I was supposed to have a CT and bone scan last Friday, the 3rd. Got halfway to appointment and pulled over to drink the one bottle of barium. Got to the cancer center, and after about a half hour, I learned the CT machine was broken. Talk about mad. I drove an hour and 15 minutes and drank that yuck. Thankfully, my bone scan was within walking distance. I tried to have my CT switched to them, but the cancer center staff was rude and condescending. I did write a complaint about one of the staff. He really was so rude.
Anyway, I had the bone scan, which I knew was a waste. A one-line result. No evidence of osseous metastatic disease. It’s never seen the cancer I have from all bone and bone marrow. I won’t ever have one again.
My CT is now scheduled for tomorrow at the same bone scan place. I switched it. Here is the kicker. This place makes you drink three bottles of barium, one the night before. I’ve never had that happen. I also have my regular cancer treatment appointment after, so another long day. I have scan at 7:45, doc at 8:30, bloodwork, Faslodex, and Zometa infusion. And it’s supposed to be raining again. It was last week too. Wish me luck.
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Wow, kbl, what an ordeal. It’s interesting to hear about all the barium you’re required to drink before the ct. When I had that kind of ct, I was always only given a bottle of it with a straw when I got to the ct department. I still get a ct but once the pandemic hit, I no longer have the barium beforehand. I was told it isn’t required at this time. I hope things go more smoothly for you with the scan and appt this time.
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Thank you, DivineMrsM. I don't quite understand the three bottles myself, and CTs never show my cancer, so it's not a fun process. I only have them every six months or so now, but this time was seven months because of my move. I keep getting them because maybe just once my cancer will show on a CT scan. I doubt it ever will, but it did show a thickening to the curvature of my stomach where I have mets, so I guess it's good to get them to make sure that thickening is still stable. I'll report back once I get the final report.
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kbl-sorry that you had to go through that!
I just had a CT on Monday and had to drink the barium the night before, then 3 hours before my scan. And then 1/2 bottle right before my scan. This scan was to check my liver and lung spots. But I don't always have to drink the barium, so I don't know why I had to this time.
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Kbl. Do you have lobular? Isn't MRI best for detecting that?
When I have a ct, because of contrast shortage, they have me drink just one bottle an hour before. 3 bottles? Oy.
Susan
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Denny123, thank you. Sounds like me. I’m about to drink one shortly. Blahhhh!!
Gonegirl, yes, I have lobular. Spine MRIs see my cancer with no problem. CTs don’t work and see none of my cancer, but the last two have shown a thickening of my stomach, and I do have mets there, so I try to make sure that hasn’t changed.
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Well, my CT scan wasn't very good. I tried to copy it here, but it isn't working. The previous lung spots are gone, but now I have new ones.
I have wall thickening of my rectum and sigmoid colon.
And a 1.2 cm lucent lesion in my inferior L5
And hepatic steatosis with increased enhancement.
I will see my onc this Friday for an interpretation. Of course I googled the stuff, but he is likely to just wait and see what another CT in 3 months shows. But all of this stuff wasn't apparently present 3 months ago.
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oh, Denny. I am so, so sorry. I hate cancer.
Susan
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Denny, sorry for the less-than-great results.
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You have all been through so much. May you each take a deep breath, let it out and find a few moments of peace in tjhe chaos that is cancer
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I don’t know how far METS have spread because my oncologist doesn’t see a need for further study. I’m on anastrozole, Kisqali, and Zometa. My most painful area is better since treatment.
This is month five since diagnosis, and my greatest complaint is not even cancer related … I have a bad cold with a sore throat, cough, and vomiting. I have been miserable, but I think I may be on the downhill side today.0 -
Denny, I’m sorry about the results of your CT. Please keep us posted. Hugs.
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So I just went on my patient portal, and I was surprised to see my CT results. I will discuss them with my doctor on Friday. I am floored by one particular statement in the report. Here it is.
Uterus and adnexa are normal.
I hope that’s a misprint. I DON’T HAVE A UTERUS!!!!!
What the hell???!
I will figure out what the rest of the report means with my doctor. I just can’t with imaging. I am shaking my damn head.
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KBL - what the heck?! That is really messed up.
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KBL-that is ridiculous.
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Yes. I called doc's office and let them know to please tell doc I will be talking to her about this Friday.
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I saw my onc today and he isn't worried about all of my scan weirdness. We just have to keep an eye on the spots that seem to come and go. And my next CT scan in 3 months will be from neck to pelvis to cover all areas.
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