De Novo Stage IV
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Still no results from the mammo/US on my remaining boob that was done last Friday. Usually results were in MyChart within 2 days, except the biopsy results which the dr didn't release until my longtime Primary called me with the cancer news.. Am I overthinking this?
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dancemom,
I vote yes! I know it’s hard to avoid reading the tea leaves but there are probably many reasons why you haven’t gotten results yet. My mo and hospital were always super quick to post results and communicate with me within 36 hours of a scan. This went on for several years and became an established pattern in my mind. One time I had a scan and then heard nothing for three days. I worked myself up with worry, at least as much as a non-worrier can. My younger dd, who keeps tabs on my bc life, also became concerned. I finally called her office only to find out she was on vacation! That was the last time I decided to divine the results of a scan based on things I imagined. The same goes for reading faces/vocal inflections from techs and providers. Save yourself the stress and let the future unfold as it will. Worry changes nothing!
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DanceMom, I like exbrnxgirl’s advice. The last bloodwork I had took five days to get. I wasn’t worried about them, but it’s annoying having to wait more than a day. One of the reasons for the delay could be a lack of staffing that seems to be a problem everywhere these days. Hugs, and I hope you hear soon.
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thanks exbrnxgrl and kbl!! I know that in my head, but it helps to hear it!
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Hope everyone has been having a calm weekend. I forgot to mention bi-annual mo visit and bloodwork visit was two weeks ago ( happy for the reduced visits!). Thankfully, I continue to hold steady at NEAD.
A very long time ago i read something that said there’s no survival benefit to discovering bc mets early. It doesn’t extend your life, you just know about it longer. I wish I could remember where I read this. Anyway, I sometimes wonder if that could be the case for me. Finding my bone met was completely incidental to what was being looked at on a non-cancer related PET. Without that incidental discovery how long would it have taken for my bone met to become symptomatic?
Every time I think I have a clearer understanding of bc something crosses my mind and I realize how strange and complicated it is. It’s no wonder that a cure has been so elusive. ☹️
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exbrnxgirl- I would have to contest that. My liver mets, though very large, were discovered sort of incidentally. If I had gone without treatment at that point, I'd have been dead within a year. I had figured as much (thanks, Dr. Google) before going to MDA (Jacksonville) for a second opinion. Without preloading that information, the MO confirmed it when I asked, "What happens if I choose not to treat it? " I guess it depends on how far gone it is when it's discovered. I've had 3 friends, in the last 3 years, who died quickly after a late cancer dx (not necessarily MBC).
I think there could be something to it for some cases of bone mets only, but even then, I think every case is different. It just sucks all the way around.
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My response to that has been - well, what if i my bone mets were not discovered until my spine mets were causing fractures?
Early seems good, although I am not unhappy that I am doing scans every six months instead of three months
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Here's a study out of South Korea. I believe it references the much earlier study I was thinking of. The gist of it is that more intensive monitoring of treated lower stage patients does not correlate to greater survivability. i.e. finding mets early through screening does not increase survival time.The research was not done on de novo patients so doesn't apply to us.
https://www.nature.com/articles/s41598-021-82485-w
In trying to figure out why I've done well this is an idea that I've played with. A 2 cm bone met that was not causing symptoms… without the accidental discovery how long would it have taken to become symptomatic? Let's say it would have taken 5 years to become symptomatic. That would mean that I would be saying I became stage IV 5 years ago rather than 10. Ugh, I don't even know why I'm trying to figure this out. If medical researchers haven't figured it out, why do I think I should be able to?
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I’m a good case. If they had diagnosed me correctly in 2013 and started treatment right away, it probably would have stayed in my bones longer before spreading. I don’t know how long it was in my stomach, but the symptoms started in October of 2018. If only one of the doctors would have listened to the radiologists who were saying they saw cancer in my spine. I’m over being bitter about it. I am enjoying life right now and am doing well on Xeloda and Faslodex. I just had an endoscopy and should hear this week how my stomach is doing
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I've given up on trying to figure out the why's. I had an MRI in 2015, for an unrelated reason, that showed my liver was clear except for a small benign hemangioma which is still there and unchanged. In 2020, I had a nearly 12cm tumor, another large tumor and numerous smaller tumors. Symptomless. Really? WTF?? It was only through the PET-CT, and then by mammogram and u/s, that a small breast tumor was identified. So, the cancer will do what it can do; I will do what I can do. Eventually, the cancer will do more than I can, but let's hope that's much further down the road. In the meantime, I'm going to enjoy my life, family, lakehouse, etc.
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Dear all, these studies that claim that there's no difference if mets are detected earlier or later, work with statistical data, and every such study has goals and limitations. Asymptomatic can be both 10 cm and 1 cm, and although thrown into "one basket", these two tumors are extremely different - the bigger and older one can have tens of mutations and escape pathways, be very heterogeneous, and its probability to survive therapies would be much higher. These studies are interesting but they mean less and less in the days of personalized medicine and tens of novel therapies. Saulius
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Saulius,
It really matters little to me in the end as it changes nothing about my situation. It was more a matter of curiosity since I am such an outlier. Yes, of course we understand that these studies work with statistical data. Many of us are familiar with statistics. Again just curiosity on my part.
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Since the only metric is overall survival, they aren’t taking quality of life into account. My thoughts about avoiding fractures and organ damage concern quality of life issues.
“It’s not the years in your life it’s the life in your years”.
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Yes, you are correct olma! I am not a medical researcher but I have a feeling that QOL was not the focus of the study I cited above. In any event, the study did not look at de novo patients.
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You guys have raised a question that I've never asked my onc. My denovo was diagnosed in my lungs and in my spine. My breast surgeon told me that if you're going to get cancer, it's best that it's in the bones because it can stay under control.
Aside from that comment being convoluted in itself, I have always thought that spine mets are bone mets. Yes, I will ask my onc next time I see her, but do any of you have a quick answer?
Except at the beginning, I don't remember any repeated scans of my spine.
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yes spine mets are bone mets, they are in the vertebrae not the spinal cord. Mine were found on a pet scan
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I don't like statistics. Everything about my cancer is "less than 5%" and yet here I am.
Stats are for research, but when it comes to patients, everybody should just shut up about "chances are small"
Edit to add: just realized that pre-covid-vaccine, everyone was saying statistically children don't pass it on. Well, guess who lost out in that scenario! I was masked, but not the preschoolers. So I spent a month in bed (pre cancer diagnosis)
"Chances are..." for 100 imaginary people. Not for the patients in the percentage affected.
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dancemom,
I actually like statistics but I always bear in mind that statistics don’t speak to me as an individual nor are they predictive with respect to an individual’s future. For me, they represent overall trends and observations but again, don’t speak to my individual situation.
I know it’s not much comfort but until therisk of something is reduced to zero, someone will fall into that less than 5% category. The risk of a lung puncture during port installation is about 1%. X-rays are taken to make sure the lung hasn’t been punctured. Two weeks after my port was placed, I had a complete pneumothorax. I needed three procedures to get the chest tube to function correctly (including the brutal insertion in the ER), spent a week in the hospital and then 4 weeks at home with a portable chest tube. Doctors believe that my lung was nicked and deflated like a slow tire leak. The odds of this happening? Less than 1%, yet someone will be the unlucky one and it was me! The stats couldn’t predict that this would happen to me but although the chances were minuscule, it was clear it could happen to someone!
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exbrnxgrl, I DO like numbers. I just wish that I fell into the larger side more often. Funny, before I always liked doing things differently and not being a conformist. Wow, I wish I could conform now! I can't metabolize certain class of anesthesia (1 in 5000- found out the hard way when I spent 2 days in ICU after a "10 min" procedure), I can't wear any of the tape (I have blister scars from the surgical tape, so the switched to paper tape, still blistered. Luckily steristrip was ok), cancer was in lower inner quadrant (6%) and sternum (under 2%). Even the ibrance i take on 75mg and still have extremely low anc. (Of now temporarily for surgery and rads) I am excited to see what joys of unusual-ness radiation brings 🤪
Portable chest tube does not sound fun. Im sorry you were the 1%
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Dear exbrnxgrl, I did not want to say you did not understand statistics, not at all - it is an interesting study. My point is that the data is only important for researchers within study limitations, but not for clinical oncologists who treat us and hardly at all understand (or forgot long time ago) simple statistical things like means, distributions, HR, p, CI, no at risk, statistical errors, study limitations (like it was correctly noted that, for example, QoL is not considered there at all, as well as 20-30 other very important measures), also rules that have to be double-checked that can invert statistics like Simpson's paradox, etc. Also all curves and numbers, like PFS, OS, ORR, are sometimes given with huge CI and large ps, populations are extremely selected, etc. Most of MOs don't even know main clinical trials that are on-going and can only prescribe drugs according to guidelines. I think it would be hilarious to say that "it does not matter if your cancer has 1 or 100 metastases in different organs" (which is mostly due to a consequence of cancer being longer undetected), and, I'd say that that specialist has lost his mind if he claims this, but in some circumstances and special conditions, and selected populations this result could be obtained. Mostly these studies try to check how to plan global screening programs, financing, etc., but they have very little to do with individual patient, and in everyone's case decisions are met individually. That said, I am sure for your good outcome early detection was extremely important, and most probably you are cured. Ehh, I wish every stage IV would be detected as early - the outcomes would be so much better...
Saulius
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exbrnxgrl - If you don't mind me asking, when did you move to bi-annual scans? Did you start with every 3/4 month scans and eventually choose to go every 6 months? Was it an insurance decision, or onc?
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mexhay,
I am currently on annual scans and I believe that started about 3-4 years ago. I do not remember when I went to semi annual scans as it was before that. Yes, I started with scans every 3 months. There were no insurance issues involved but rather a concern over the huge amount of radiation each scan exposes one to, so it was a joint decision between my mo and myself. Take care
Saulius,
Not wishing to beat a dead horse but truly, you have gone above and beyond in your fine dissection of the research I referenced. I get it. Truly I do so please stop explaining it as if I were slightly dim. My only point in even referencing the research was to explain what sparked my thinking. I don't get insulted easily but you're getting close with your well intended but condescending explanations.
I appreciate your optimism but there is no cure for bc. A few people here and there never progressing is not a cure. It's just a fortunate occurrence for them. I do not consider myself cured nor does my mo but feel free to use whatever terms you'd like. I am sorry that you have bc and have been through so much at such a young ag I imagine that as a male you must face some different issues than we do as women. Take care
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My oncologist suggested scanning every 6 months instead of 3 after I had two or three NED scans in a row. Not just to lessen the radiation exposure but to lessen the anxiety and possibly the workload for her office staff having to get authorization and scheduling the scans.
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Dear Saulius and Exbrnxgirl,
I appreciate both of you so much.
Saulius-your optimism lifts me up and since it has been over 40 years since my last statistics course, I appreciate your explanations. Exbrnxgirl-I don't think any of us are dim, but some of us benefit from the detailed explanations Saulius provides.
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Yes, olma! Lessening the anxiety is also a benefit of less frequent scans. I admit that I was a bit nervous every time my mo suggested lengthening the interval between scans but I’m quite used to it now. I should also add that should I experience any symptoms my mo would not hesitate to scan.
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Regarding scan interval: After I was NED for two scans, my MO suggested going 6 months to reduce radiation - partly because I'm so early in my treatment. I almost made it 6 months, but wanted to scan before I moved to a different state. I also switched from monthly appts to bloodwork at 6 weeks and office visits at 3 months - the intervals are partly for my comfort level, as I was asymptomatic when dx'd and bloodwork was the only clue. I'm considering 3 month intervals for both, so I guess we'll see what my new MO thinks next week.
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Looking back, I would have had way, way too much radiation exposure if I had continued the scans at three month intervals for over ten years 😱
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Last year with COVID and everything else, I was thinking about asking my onc to wait 12 months to scan. Maybe I am a little over confident but I was feeling burnt out with treatment and so many office visits. I did wind up stretching out the interval to 9 months for my first “covid time” scan
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I hear you olma! I don't believe ignorance is bliss but I feel much more relaxed only having to face the PET scanner once a year. My mo doesn't do tumor markers so I have no stress from that either. This works for me!
PS: I only see my mo twice a year and have blood work done at that time.
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Chicagoan,
You are so nice! As I said with respect to the research I referenced, it sparked my curiosity about my own situation. I explained that so it does feel a tad condescending to me to have someone explain their take on the limitations of the research more than once. Since saulius responded to me, it does seem as he felt I was not understanding the research but perhaps he/she was indeed explaining it to all.
I do not know saulius and am sure he/she (I feel like he is correct) did not intend to be condescending. I appreciate optimism as well but optimism grounded in reality. Having someone who is not my mo tell me I am cured, probably, is not comforting to me as there is no cure for bc and I’m not sure that my posts on a bc forum put anyone in a position to make that pronouncement.
I have been fortunate enough to have had a mostly easy time at stage IV compared to many. I live each day with optimism but with a clear eyed view of reality and a very pragmatic rainbow over all.
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