De Novo Stage IV
Comments
-
SondraF, I’m hoping this is something that subsides quickly and you can feel better. I hope you can make it through the scan okay.
0 -
I think its getting there - I layered on some Gaviscon last night and that got the worst of the spasms to stop and the pain is passing although taking a walk earlier was not super comfortable. My blood oxygenation number is coming up too - it was in the low 90s the last day or two and I had to focus on breathing and now its been consistently in the mid 90s so something has clearly calmed down to let me breathe more deeply.
I saw MO three weeks ago and while my full bloods weren't back at the time, my liver numbers were and she noted they looked great. It was a week later when all this started off so Im guessing I finally got enough olaparib in my system x a potential contaminated food source causing some bacterial issues and here we are!
Supposedly it takes 2-3 months to get through the side effects for this drug and then its clear sailing. Maybe I just packed all of that into two weeks, but at least it was two weeks with a lot of time off and I didn't need to go anywhere.
0 -
KBL, I am so happy for you, you enjoy having your grandson around everyday. He will keep you busy in a very good way.
I worry about Piraisea, radiation is tough and I hope she posts soon when she can.
Tinkerbell, how are you?
Sondra, ask your MO about vitamin C, I heard some physicians prescribe vitamin C after radiation/surgery.
0 -
seeq, thanks for keeping our thread active. I hope all’s well.
0 -
Is anyone still getting yearly mammograms? I had a lumpectomy a few years ago after good results with I/L (not standard of care, I know) and was referred for yearly mammos at the cancer centerafter that by my breast surgeon. I'm no longer NEAD and wondering if there's really a need for more imaging when I get a lot of imaging already. The NP who I see to review the mammos said I definitely should have this “much better" look at the breasts. I'd be interested in your thoughts or experiences.
0 -
I am not. I get PET scans twice a year. I figure they'll pick up what my last mammo in 2018 missed in spectacular fashion.
0 -
Rosie, My PCM recommended mammogram. When I talked to my (former) MO about it, his response was essentially that there was no reason to run an additional tests unless we were looking to change treatments, and since my current treatment was clearly working, no change was required. The periodic PET-CT and bloodwork were sufficient.
From my own perspective, the mammogram only saw my lump after it was already identified on the PET-CT, so I don't feel like it's the be all end all anyway.
0 -
I was told no need for mammogram due to regular CT scanning of the area. Also, if I had any question about anything MO would do a straight up physical exam right then and there so between the two approaches I figure its covered. What crap luck that would be to get a second primary in the other breast. I wonder what the frequency of that is?
0 -
Re mammograms, when I went for my post mastectomy check-up, SO set me up for a mammogram on remaining boob 2 weeks later as it had been over a year since the one that started this journey.Not sure what/when scans I'll have in future. Insurance doesn't cover PET. No MRIs until after exchange which cant be for a long time. I have the 6 month post rads wait, then my next big break I can take is summer 2023.
Hi everyone. Can't see more than the last few posts. Sondraf I hope you are feeling better. KBL, I dont have grandkids yet, but I love teaching preschoolers! I laughed with another teacher saying how the littles give us such good energy, and she answered "we are like vampires"🤣
0 -
Thanks for the responses, Elderberry, SeeQ, Sondra, Dancemon. For several (many) of us being Denovo and Stage 4 from the get go, it seems our mammograms didn’t do their jobs. For me, the mammogram leading to my dx only showed suspicious axillary nodes. Eventually the breast lump was discovered using ultrasound. Had it been seen the previous year, who knows if my path would have been different?
I’m scheduled for a follow up ultrasound in a few weeks, to look at a spot that was seen on my December mammo (same breast as original cancer). Ultrasound conclusion was “probably benign” but look again in 6 months. I’m going to keep the appointment and then decide if any more.
0 -
rosie,
Our mammograms did do their job but mammograms are not perfect and that has long been known. That is why they are not the only diagnostic imaging in use. The reality is that there is no perfect imaging. Additionally, bc can be too small to be detected on imaging until it’s not and there is no way to predict when that will happen.
I am an old de novo patient, 10 1/2 years! I had had a mammo 13 months before the concerning mammo. There was no reason to suspect I had mets already, yet I did. The thought that imaging can find all cancers is comforting but it isn’t true.
0 -
That WAS my first mammo. And my (second to) last since they did one more before they redid my axillary biopsy. Honestly though, I've always had very dense breast tissue so I wonder if I had gone privately for my first at 40 as per US guidelines (and not trusting that the social system and odds that waiting until 50 would have been ok) if it would have been seen at that point (was dxd at 42)
0 -
sondra: I have very dense breasts as well. I suspect my cancer was just sitting there, getting bigger and bigger. Unfelt by human hands and undetectable by mammo. I should have been getting ultrasounds all along.
0 -
I don’t get mammograms, partly because they still can’t find any breast cancer in my breasts but also because I wouldn’t do anything if they did since I’m metastatic. I also have very dense breasts.
I’m behind on reading threads because I’m so busy with my grandson. Lol.
0 -
Exbrnxgirl, We clearly have a difference of opinion here. The mammogram that did not see my breast cancer, (which had already spread to my axillary nodes and my liver) and probably at least one the year before did not do what it was supposed to do. We could say it did it’s job by picking up the suspicious axillary nodes, which led to further imaging of the breast with ultrasound. My frustration is that had previous mammograms, even one year earlier, seen the breast abnormality, perhaps action could have been taken before the cancer had spread.
0 -
Rosie,
Actually, I think the way we look at it is different. Remember that just 13 months after a clear mammo, a tumor was found in my breast and, on an unrelated PET scan, my bone met was found. I was aware of the fact that imaging is not perfect so although I do wish my bc had been found things earlier, I always knew that my situation was possible though not common.The limitations of imaging are well known. You and I are simply the unlucky ones. It is frustrating but given the imperfect nature of imaging and the fact that bc has likely been growing for years situations like ours will sometimes occur. There is simply no sure fire method for detecting every case of bc in its earliest form. Mammograms do do what they are supposed to , just not every time for every one. I wish this wasn't so and I wish the fact that mammos are not perfect would be more widely recognized. Again, I hear your frustration.
0 -
yeah, none of this diagnostic stuff is perfect, which kind of sucks for us.
I also have dense breasts. Last 3 mammos was called back for US. The third one found the cancer but after I already noticed the weird dimpling and showed my GP. It was a little over a year between my last mammogram and when I noticed the skin. Covid delayed things a bit, but I was still within a year and a half between mammograms AND Ultra sounds. Diagnosed at 52, 20 months after last mammo/us. I dont know if 3 or 4 months would have prevented the spread to my sternum.
Unfortunately, the guidelines are for the 90%.
And unfortunately we are in the even smaller % de novo, and then I'm in an even smaller percentage with regards to location of both tumor and Mets. Oh well. All we can do is go along with our treatments.
0 -
dancemom,
Yup, we the unlucky who fall into the small minority do exist. Since I was aware of the limitations of imaging, I was bummed but understood what those limitations meant. You know how when you sign the consent for port installation it discloses that there is a tiny chance of lung puncture? I think it’s about 1%. Well I was that 1% (probably less because mine was a slow leak). The post installation x-ray did not show it because it took two weeks to be detectable. All of this was incredibly rare and not likely to happen to most but it happened to me! It was the most awful experience of my life but it was just very bad luck. Although modern medicine is amazing it is not perfect as most of us have discovered.
0 -
Scan results good - clean CT and spine MRI looks stable (apparently a small outstanding question due to angle of imaging but MO believes no change). All the gastro issues have resolved other than slight appetite suppression yet, so I continue on the full dose of Lynparza. Bloods are great, much better than on Ibrance and I more or less feel pretty good.
I did lose 2.5 kgs over those two weeks of intestinal distress, so will be interested to see how next month compares.
0 -
Awesome news, SondraF. I’m glad Lynparza is not too bad. I feel the same way about Xeloda. I feel much better on it than I did Ibrance
0 -
Yay for stable scans! And double yay for feeling better on the new med!
0 -
Dear Sondra, congratulations!:) Saulius
0 -
Thanks everyone!
Actually, I have a question about NED and NEAD vs stable. What is the difference on a scan? I cant imagine I would ever be NED based on my bone scans because things light up, or is NEAD stable?
She did show me the imaging on the screen and dear lord my poor right pelvis, but I had been told in the past that the Xgeva had helped to fill in the lytic lesion there, along with the radiotherapy blasting it out.
Just once Id love to say NED! like others but I guess that would mean I would never have lesions ever show up on my spine scan? So confused!
0 -
I have no great answer for you, sondra. When I have a PET my bone met is still visible but is considered metabolically inactive, hence NEAD. I am not sure if there are hard and fast definitions for these terms (but maybe there is).
0 -
My first ever CT scan after I was diagnosed and on Ibrance for three months said no evidence of disease. I had a moment of thinking I was NED, until I realized that CTs don’t work for me and I was still covered from skull to femurs in cancer. Such a bummer. I will never be NED either. So frustrating.
0 -
Agreeing with exbrnxgrl, I also get PET Scans and they look for metabolic activity in the lesions. If those scelrotic lesions are not showing any hypermetabolic activity, then I am NEAD or NED (No Evidence of Active Disease)
0 -
I don't get PET scans ever so I'm guessing they can't say with clinical certainty what is or isn't active. Fair enough but it would be nice to know what is not active - would there have been some early warning about my L4 growth before the surgery for instance.
0 -
I feel confused that there may be an actual difference between NED (No Evidence of Disease) and NEAD (No Evidence of Active Disease) I read NEAD as meaning "you have disease still but it just isn't doing anything" ---- better than stable but not really "No Disease"
0 -
I have seen both NED and NEAD in my chart, sometimes for the same scan. When we are metastatic, we will never be considered disease free, anyway.
0 -
Dear Elderberry, dear Olma, in LT they never use NED/NEAD for stage IV, they always write "stable disease", even when scans are absolutely clean. I understand them but that is frustrating. Just once, when our ultrasound guy was in very good moods, he wrote "remission":) Anyway, you all guys know and feel that in certain circumstances cure is possible and it happens in stage IV. If they cure stage IIIC, what is the real difference? Maybe some of stage IVs are actually stages 3.75?:) Who ever would be so sure to claim IIIB-C was not stage IV initially? A very blurred difference. And lot's of relapses after "cures" of early stagers. Even after 30 years, with no targeted drugs (okay okay tamoxifen:) when diagnosed, some people are alive. There's also data collection problem: no consolidated registers existed for many years. For example, when someone bothered to take patient cards (paper) and finally digitize that info, it appeared that 11% of biopsy confirmed stage IVers live >10 years (https://www.consumerreports.org/breast-cancer/wome...), and in usual statistics that you find, it is barely 1-3%. So there are cures. Let it be 5-10% chance (and today's statistics will be "official" after 10 years) - I'll take it.
Saulius
0
