De Novo Stage IV
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Chicagoan - I do wonder for the long haul de novo ladies if the treatment they received pre-CDK4/6 inhibitors does help increase longevity in some instances. Obviously its a (very) skewed sample here, but I think of Denny123 in the same situation. Or there is someone on another thread (forgot who and which one) who is having drug changes due to breast tumor growth but everything else is stable - would this have been an issue if the tumor had just been removed up front? Sometimes I think it would have been nice to have the option, so long as risks were clearly laid out, up front for standard treatment or straight to the current standard of care.
This whole de novo and cancer thing still hacks me off something fierce. My odds were so so so far out I still have days when its so hard to accept that what is going on is real.
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I had to read back on Chicagoan to see the problem, but can't really find it. I had 3 failed liver biopsies to check the "spot" on my liver, and all 3 missed. So it was presumed to be just a lesion.
Almost a year later, my liver was filled with tumors. So I have always been upset that I had to go through the DMX , recovery, chemo and rads....while my liver tumors were growing rapidly.
I darned near didn't live through the liver problem. And even though my surgeon said that I still should have had the DMX, I don't believe it.
Same as my recurrence 10 years ago in my chest nodes. Radiation was suggested, but one was too close to my esophagus. And they would have had to crack my breast bone open to get to them. Instead, I had chemo which got rid of the nodes.....instead of rads or surgery.
Denise
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Sondra-I was offered the option of doing chemo but I was so shell-shocked, I just chose I/L which has worked out really well for me. The breast surgeon basically treated me like a goner. Since I was new to cancer I didn't ask many questions. Her reasoning was that since the cancer had spread there was no point in doing a mastectomy-at least that's what I think she meant. But now I see that many long-lived de novo women did have the mastectomy before starting other treatments. But I don't think I want to do a mastectomy at this point, even if I could. Since my tumor is so deep in my chest wall I worry that the functionality of my body might be greatly impaired. Sounds like you also did not get the choice?
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Our stories vary in many ways but share similarities as well.
My story, for those who don’t know it, was one of accidental discoveries and an incredibly rare se from having my port put in. I was staged IIB after a bmx and my mo asked me to participate in a clinical study. As part of qualifying for the study I had to get an echocardiogram. Fluid was seen around my heart so I was sent for a PET. PET reveals a complete pneumothorax of the right lung and a spot on upper femur. The pneumothorax was an emergency of course yet I really had no symptoms. It’s believed that when my port was put in, my lung was nicked and over the course of two weeks or so, slowly collapsed. One week in hospital followed by four weeks at home with a portable chest tube and then we did the femur biopsy which was an identical twin to my breast tumor. Since it was a lazy grade 1 and was an incidental discovery, it might have gone undetected for years or might have been killed off by chemo (that I never had!). I had rads to the femur and have only taken AI’s since. The naughty port functions beautifully now. I used it for about two years for a bone strengthener and still use it for scans and blood draws. I’ve even been able to have it accessed in the ER once or twice! It’s been 9 years and no progression. And the fluid around my heart? Idiopathic, it remains unchanged and is of no known significance 🤷🏻♀️
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We do all have such varying stories. I haven’t had a mastectomy, but they’ve also never found the cancer in my breasts, so that would have been awkward.
I posted in another thread today that I asked for a CA125 because I have a GYN appointment next week. Back in 2016, when that tumor marker was checked, it was 80. Normal is 35. Because all of my tumor markers were abnormal, they discounted it. Still ticks me off. Anyway, CA125 came back at over 1440 today. I was floored. I have a call in to my doc to just see what they want me to discuss with the GYN. This disease is unbelievable. I have had so many twists and turns. If I didn’t care about my family, I’d donate my body to science.
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I also just posted I’m going to take a few days off from the board. I need to just enjoy family and forget about this for a little while. Hugs to you all, and happy holidays.
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Merry Christmas, KBL! Enjoy the time with your family. I'm thinking good thoughts for you for your GYN appt next week - there's always something. Hopefully, there's an 'innocent' explanation for that TM.
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19 years ago, neoadjuvant chemo was in clinical trials. They had been doing the mx first and chemo later. At least now one might have a better chance.
But the A/C and Taxotere didn't touch my liver mets and did no good.
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Happy holidays to you to, kbl! Hope you are able to forget cancer and this board and enjoy your family.
Denny, I had chest node involvement as well at my initial diagnosis. I had difficulty swallowing during radiation as well as some kind of awful heart burn. My esophagus probably took a hit. But then again I don't really know much about the esophagus.
It just occurred to me that after chemo I was NED in terms of imaging but surgical samples showed residual disease in 2 lymph nodes ( which is what I show in my signature). Since they were removed I was then NEDer then after chemo. Fast forward a few years and circulating tumor cell tests showed I still had a bunch of the beasties in my blood. Not feeling so NED anymore although scans were still A-OK. Another two years or so and CTC was zero. At that point I could relax a bit. My point is that reducing tumor burden even in stages seemed to work for me. All the different modalities of treatment helped.
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Heidihill,
I was not de novo stage IV -- that came later -- but I saw that you had had two CTC tests. When you had your first, what was your CTC number? Just curious, bc I had this test done within the last couple of months and my MO didn't really provide me with much info about what the numbers mean.
Thanks much.
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Thank you for the Christmas greetings. Merry Christmas to you all.
Hugs. Have a wonderful day.
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Found out when I broke a rib, didn't do anything to break it, bone mets did the job. I had a lump but had a Dr. Dismiss it as my age/weight and didn't even other a mammogram. Almost a year to the date broke the rib...
Six years now...
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Hi, Strong65. It’s amazing to me when doctors dismiss what we’re feeling. I’m sorry that happened to you. I hope you’re doing well and continue to do well. Thank you for your story.
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In past discussions on this thread, I know there are differences of opinion re surgery to the primary tumor. Recent literature is supporting aggressive tx for de novo patients. Actually folks who are on systematic tx prior to surgery seem to be receiving max benefit. So this may be a good time for folks that are interested to bring forth to your providers. I know some of us received surgery, as in my situation, not knowing that stage IV was present. Regardless, the research indicates there is still a clinical benefit.
I recognize the pendulum can swing back to no benefit re surgery to the primary tumor, you look back a few months and this was the case. So the point of bringing this issue forward, I recall some folks mentioned they want the tumor out, look at the recent literature, this may be your chance....
Neoadjuvant therapy followed by surgery may improve survival for patients with metastatic breast cancer. (Penn State College of Medicine)
Happy New Year.
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Thank you for the article, Tinkerbell. I’m actually one of the ones who didn’t have a mastectomy. I don’t know what good one would have done for me, though. They can’t find the primary in my breast. I’m not only de novo but occult as well. I don’t know if I had known a lot sooner when the cancer was there but they kept missing it if maybe they would have been able to find it in my breast way back seven years ago. I’m an odd case.
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KBL: I haven't read about having de novo and occult. I'm sure the literature is sparse due to the rarity but hopefully you are responding well to your treatment. It saddens me so many of us had imaging fail before cancer being staged as MBC. It seems the research is moving towards genomic rather then one size fits all approach based on ER/PR/HER status. Unfortunately I'm about 2-3 hours away from a facility that is research driven. So it's imperative to research and dialogue with folks on BCO.
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Thank you, Tinkerbell. Unfortunately, because the imaging still doesn't work for me, I hope my meds are working. I am still on my first line, so fingers are crossed. I have another CT scan next week. We shall see. I'm also supposed to have another lumbar MRI since those actually do show the cancer in my spine. I'm mainly having that done to see if the numerous mets I have throughout my whole spine are stable. I'll keep you posted. That's supposed to be in a few weeks if insurance okays it.
Have a very Happy New Year. Let's hope next year isn't as bad as this one was with this stupid pandemic.
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Interesting article. A lot of details left out, though. For one thing, it doesn't mention how long the improved survival time was, and it doesn't address multiple mets versus a single met. I suspect that with bone and lung involvement at the time of diagnosis, my treatment protocol would still have been palliative rather than aggressive.
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I fit that study so well and am happy to see it. I’m HER2 and ER +, after chemo with H&P we discussed surgery but due to conflicting study/trial results both the surgeon and MO couldn’t recommend it either way. I was leaning towards surgery and my husband just wanted it out. I had a single met in my hip bone, so it was really just up to me. I chose surgery (lumpectomy) and never looked back. So far (4 years), I’ve had no new mets in the body. I don’t know if surgery helped keep me stable but it helps validate a decision I initially struggled with.
Quick update: I’ve been cleared by cardio to restart treatment and I’m on low dose heart meds until I’m back to normal but physically I feel great.
My best wishes to all for a better year ahead.
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Illimae: So glad you provided input. After reading the article, I thought of you immediately with HER2. Thankfully, the treatment team was flexible and gave you the option about surgery. If my tumor was located before my surgery, I often wonder if my BS would of went in this direction. My BS tends to be aggressive so I'm leaning the outcome may of been the same. However if I didn't receive the surgery, the mental aspect would of been challenging for me. Although I know some folks on multiple threads mentioned their primary tumor responded to treatment, achieved NEAD.
I'm sure you are relieved going back on treatment but enjoyed the break. Glad you are feeling well.
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I was one who did have surgery after response to first line of treatment. I was a bit surprised that my new MO said she also would have recommended lumpectomy and radiation for me. My first MO was not completely on board but arranged consultations when I asked about surgery, leading to the more aggressive treatment.
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Hello ladies, happy 2021! Wishing a healthy and safe year for all.
I’ve been away of board for a couple of weeks, we suddenly decided to switched the internet company!!! They were not as spontaneous as us, so it took days! I missed our discussions here, I wanted to respond to some of posts but thought,first, read themall, now I forgot the details!!
Stay safe
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Thanks for sharing that study, Tinkerbell, I think I had seen this one before, specific to HER2+ women. I had mentioned that one to my MO too, but it did not sway her.
For me, I know if I really, really want breast surgery, I can go consult the surgeon I had seen originally and see what they think. OR go back to the cancer center I was originally treated at, since the MO there had discussed the possibility of surgery with me. I suppose that means she knows a surgeon who is amenable to surgery on Stage IV people.
But, I guess I am not that motivated at this time, because I have other things I want to attend to first. I need a whole mess more of dental work and since I plan on being around long enough to make that worthwhile, I am working on that for now.
If my breast tumor was to show activity on a scan, that would be a different story, but for now, it doesn't. On the mammo I had recently, I'm pretty sure the focal asymmetry in that area would have normally warranted a biopsy but since I'm already Stage IV all they did was note it. No telling if there is a small amt of cancer in there without biopsy or surgery. My doctor only cares about scan results.
I think that article noted that other Stage IV cancers routinely include surgery as part of the treatment plan. But for us, so far, that's not the case. Wish there was more clear evidence either way.
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Also, Happy New Year everyone and I hope the holiday season was peaceful and as enjoyable as could be, in spite of the "two C's"
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One thing to consider is that fact that after surgery, chemo might have to be delayed for about 6 weeks. Some of us cna't go that long without chemo.
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yes very true, Denny. I’m on H&P and I never miss, although I have pushed off treatment for a week just a few times for vacations.
Risk of infection and other complications, too
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Hi Ladies.
I haven't posted much, but have gotten a lot of helpful information from reading a lot of posts.
In the past couple of months my cancer breast has really started changing shape. My nipple is inverting and there is a fairly large indention on the side of my breast. I've seen some post about changing breast but haven't really seen any explanations for this?
Thanks in advance for any information
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Twyse - my nipple was inverted before diagnosis, but it has become even more inverted as the tumor directly behind it has shrunk through treatment, to the point where Ill never see that nipple again. However, at the same time, the long indentation on the side (which I thought was a stretch mark because it sure looked like one) has gone. Have you had scans recently? I would raise it ASAP with the MO though because it could be an instance of the breast tumor making some changes and growing while the mets are staying stable.
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Sondraf, thanks for your response. I have had scans and an ultrasound on the breast. They both state that the tumor in the breast is stable. I'm starting to not have too much faith in my scans though. Not sure why I feel that way. I have a few new mets in my C spine that weren't there before. Granted they were found by my first MRI that I ever had last month so are they just not showing up on CT or Bone scans?. According to reports they are very small. I also had a recent PET scan and it did show some activity there too. I have neck pain, but i've had this pain for a long time and just now things are showing up? I don't know. I try not to be that person that with every pain I have, it must be cancer, mode.
I actually have an appointment today for radiation on my original rib met in hopes it will take care of some pain I've had in my scapula area for months and months.
I also see my MO Thursday so I will bring up my breast changes again. We did just recently change from femara to falsoldex because of increase in markers and the new mets. Just had my first loading dose last Thursday.
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Hello friends!
I have been lurking on the boards, not really posting but as always, LUV this board!
I wanted to chine in on the sugery after treatment for de novo with mets diagnosis.
I was diagnosed 12/19/19. Had 4 rounds of chemo in early 2020 with great success. Reduced the breast tumor significantly and bone mets as well. I had surgery in July 2020 for ovary removal and lumpectomy (both breasts). I came out with lots of fun scars but I am so very pleased my MO and two surgeons were all on board. It was never questioned. My breast surgeon wanted to do radiation but my MO said no since I will be in treatment forever with Herceptin and Perjeta.
I am also HER2+. I am happy to report that I am NED per my last bone scan!
On the COVID vaccine, I am also ready to get it ASAP. Here in Texas, people with chronic conditions are in the 1B group. Unfortunately, it was announced late December that 1Bers should contact the distribution sites but they are NOT READY. Such a cluster with how this is being managed by the states and the poor overwhelmed Healthcare system.
I am monitoring closely. When I saw my MO last Monday, he had just gotten the vaccine! He said maybe late January I might get a spot.
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