De Novo Stage IV
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prairiesea, I'm so glad this thread has helped you. I started this thread. Let me tell you how similar our journey is. Here is a link to my story. If it doesn't start from the beginning, please scroll to the top to see it. I am very fortunate, as I've had no fractures, but I have a lot of mets throughout my whole spine, which due to not being caught early enough, spread to my stomach. If you have any questions, please feel free to ask. I know how hard not having a definitive answer is when you know something is wrong. Hugs to you.
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KLB: Thank you so much for starting this thread, it really is both a comfort and a tremendous source of information. And, wow, your history does sound a lot like mine....especially in the repeated reluctance of dr.s to look into things. Sorry to hear about the spread to your stomach. I doubt that the delay in my dx has been six years, though I do recall pains back before the first real critical urgent care visit in Jan 2020, and wonder how long before things had been developing.....with repeated negative mammograms all along.
JavaJana, thanks for the encouragement about the rads, and the systemic therapy. Courtesy your posts and many others I will have much better questions to ask the onc next week.
I've notice on my medical portal he's already scheduled me for some kind of infusion after the appointment, which surprises me a bit, presumably I will get a call the beginning of the week to explain that. Anyway, though not loving this diagnosis, I am indeed keen to find something that will address my disintegrating (per one CT, "moth eaten") bones, and now a little more hopeful that that can happen.
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It sounds like a bone strengthener will be the infusion, but please let us know. I am on Zometa. Some get Xgeva. If this is what he will be doing, please know that once you start, going to the dentist will be very tricky. I'm sure he'll give you all kinds of information. Hopefully you've had an exam recently so you don't have to worry. Also, please know if you have a bone strengthener infusion, you may have a rough go with side effects the first day or two. It's almost like getting the flu but it's not the flu. Ask any questions here you need to. We are all a big support for each other.
Also, I am on Ibrance and Letrozole, both pills. I have not had any chemo.0 -
Ninetwelve: Thanks for the reassurance about folks taking off time for various reasons. Unfortunately, My MO will not entertain the discussion, for she will not lower my dose unless it's based on critical lab values or severe side effects. The logic was not messing with something that is working despite numerous folks had their Ibrance dose adjusted and not have progression. These last few days It felt good to feel like myself again. In any rate, I hope everyone receives a good "bounce' after taking time off from treatment even if it's for a few days before or after a vaccine.
Prairiesea: Hugs and Prayers with your cancer journey. We are here if you need us...
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Prairiesea- welcome, what a story! How did you not reach through the phone and rip the oncologists head off when he told you it was likely MBC? Although, props to him I guess for owning up and calling in advance of the appointment. Did they ever agree/find a breast lump given the dark area on the PET? And with a negative 3D mammogram too - I see that modality claimed as practically infallible in some of the diagnosis threads.
I liken a de novo diagnosis to a plane crash - statistically it is remote but possible, and can often be the result of systemic/communication/technical/cultural errors lining up in just the right way, just the right chain of events. Its all unfortunate and distressing, and there is a desire to direct anger at someone/thing, even though you know that won't change anything or wouldn't have changed the outcome in the first place. It still comes and goes for me, although now it seems to have morphed into anger at the overall unfairness of it all. I think you definitely have a right to be pretty pissed off at oncology, though, to get so wedded to one diagnosis so as to discount all others.
Regarding treatment, the first order of business is to get those bones supported, hence the bone strengthener. Lot of good tips in the bone mets thread, and definitely get checked out/flag to your dentist you will be on these. I see mine every six months now so he can keep an eye on things.
Also, definitely don't discount the systemic treatment. Since I first posted in this thread the drugs finally started on my main breast tumor and its down almost 50% in size and lymph node also seems to have gone (due to Covid the requests for my diagnostics have been denied by my original hospital, but hopefully those will come through soon so we can see!). Bone mets are holding steady (only in L3-L5, not L1 as I noted originally - I switched oncologists and finally was shown my scans) and while I have twinges here and there, no pain and I am not on any painkillers except for some ibuprofen now and then, usually after I have been either sitting or standing too long.
Regarding the traveling and hiking - I know there are quite a few ladies doing active outdoor things like lehrski launching herself off mountains into powder or Andi67 is big into hiking I believe. The trick is to learn your limitations for fatigue/pain and learn to accept the limitations. It'll take some trial and error, but I would make sure you also communicate this desire to your care team as a goal of your treatment. I guess at the very least with Covid you will have a couple months to get into a rhythm with your treatment before everything starts opening up again.
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Welcome! I was dx'ed with a bone met almost 10 years ago. I try not to give anything resembling medical advice as I have no medical qualifications, so please understand that what I write is based on personal and general experience.
You mentioned that you have an infusion scheduled and someone guessed that it might be a bone strengthener. That is certainly possible but until you know what that infusion is don't make any assumptions. As to what treatments come first, or not, there is no one way for everyone. If I were to compare the course my treatment has taken to others I would think that my doctors had done something wrong. I have never had chemo, IV or oral, I have had rads to my bone met despite not having any pain, yet here I am almost 10 years down the road and NEAD since initial tx. Many are shocked and can't believe my mo didn't prescribe chemo*,many will say that rads for bone mets are only given when there is pain. My point is that although we can make generalizations, you and your mo should focus on your situation.
This is an excellent place to come for support and friendship. Please remember that none of us are medical professionals and although we have a wealth of personal experiences you do want make sure your mo is dealing with you and your bc as an individual. Take care.
* I was presented with AI’s or chemo as appropriate treatment choices by both my mo and a second opinion mo. I tend to choose the mildest tx first knowing that the big guns will always be there, particularly since they were both presented as viable options.
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exbrnxgirl is absolutely right, always rely on your MO and yourself to make all decisions. We all have different stories, but I’m grateful for all perspectives that I see on this forum. I’ve rarely met anyone with my situation.
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KBL,
Thanks. I have never seen anyone whose story resembles mine so I focus on what my doctors advise. I do read extensively and am interested in the experiences of others but I always bear in mind that I am an individual. I am also loathe to give any medical advice to others or interpret imaging results that folks post here. I teach first grade so I am not qualified to give advice or interpret medical findings and my experiences with bc are just that, mine. Those experiences are not predictive of what anyone else might experience nor are they a substitute for qualified medical expertise.
I am happy that folks can come here for comfort and support but I hope that medical information and decisions are made in conjunction with your doctor. Sorry to say that some info that members post is incorrect* so everyone needs to run things by their doctors*Just today, I read a post about reconstruction. The member stated that she did not want implants because they need to be replaced every 10 years. Although this was once thought to be true, it no longer is. This is just one small example of why everyone needs to run all info by their doctors for accuracy and to get latest info.
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Thanks again, all for all this very good feedback.
SondraF: Gratitude for your outrage on my behalf. Yes, I did want to yell at the onc, however, he called in the midst of an extended class period for an undergrad course in which my students were doing some hands-on work on their own and I took the call because I thought it might be a nurse setting up an appointment, not him. So, I had to be very vague in my responses. I actually think the Cancer Center here should transfer me to a breast cancer specialist now; I have absolutely no evidence that this very young oncologist, quite new to the center, has much experience in breast cancer at all. More importantly, though, I have reiterated to him again, as I did as he seemed to be rushing the myeloma dx, that I want to be referred to a specialist at one of the regional major cancer research institutes for a second opinion. Unfortunately I know too many folks in this town who have had some kind of cancer or another, and know it is routine to have a real expert recommending treatments and the local folks following suit.
exbmxgrl, KBL: Appreciate all your suggestions, rest assured that for me this forum is a very welcome place to hear experiences outside the bubble of my conversations with the onc, appreciate and respond to the multiple journeys people with issues like mine are on, not to get medical advice per se. A researcher myself, I figure that in this field as in most others what matters is a range of kinds of "evidence," from scholarly articles on clinical and medical research, to recommendations on the part of major oncology conferences and practices (a main source of my questions for next week), but also the real, individual, human experiences of other patients' stories. But yes, my discussion with the oncologist (and hopefully others more experienced than him) will definitely be at the center of decision making. It's just that, after so much delay and misdirection in my diagnostic path, I've learned that I need to rely on multiple sources of information, as doctors are human too and not without blinding prejudices at times. And to stand up for myself, which as a shy person of conviction is not always easy to do. For that especially, folks like all of you are a great inspiration.
And thanks, mods, for your kind welcome!
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SondraF: Oh, and re the PET/CT.....this happened after the regular CT that had shown some shadows in the breast. No mention was made of the breast on the PET/CT report, though there was mention of the lymph nodes next to it. I would like them to go back and look. The nodes plus the analysis of the very scanty sample on my second suboptimal BMBs helped to set off a potential shift to a lymphoma dx for a hot minute. I don't know where we are with that now, except my appointment with a visiting hem/onc specialist was canceled. The onc seems to regard the lesion biopsy report "favoring" breast cancer as the "most" definitive of a number of rather ambiguous biopsy reports. Another question to raise.
But enough about me. I hope all you very generous women are enjoying some sunshine and spring weather like we have today. If my bones are up to it I plan a nice walk with one of two close friends I've told about this.....
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prairiesea, welcome to the thread, thanks to KBL for creating this wonderful thread, it is such a great place for us de novo s to discuss about our treatments and reduce our confusion and fears. please do come back here more often, as this place and ladies will provide you best support and comfort.
I hope Jen checks in soon, as she can provide great support once you hear her story and achievements.
just few tips, +getting a second opinion is a must even if the first MO (medical oncologist) is the world-well-known! + Please don't hesitate to ask questions or challenge your MO's course of action. +See if your clinic offers support group.
+Also you might want to take a look at organizations like Susan G Komen and living beyond metastatic breast cancer, these 2 have annual conferences with expert speaking about the latest, worth to try but ladies will inform the board about upcoming events. Susan G Komen offers different useful events as well, for example online meditation, I found it quite helpful specially during lockdown...
About bone Mets treatment there are several treatments, radiation is one of them. Radiation therapy for pain treatment, palliative treatment, usually takes 10 sessions, but I personally prefer SBRT as more newer technology less side effects, fewer sessions, I've done 10 sessions of palliative radiation for my fractured L1. Also proton therapy is better but expensive and hard to get insurance approval, don't be surprised if you see insurance companies easily approve proton therapy for prostate cancer but not for MBC!
As you are a researcher, you know knowledge is power. There are many reliable sources available in this board, including podcasts. as a researcher too, I opened a new topic in my search (MBC). I am sometimes surprised with some medical research articles how got published with less than 20 cases, once I saw one with 13 cases, so for me those are good to read but not totally rely on their conclusions. I personally learned more here than everywhere else, because I value experience and real stories.Sondra mentioned a good point, to accept limitations and find ways to manage activities in line of those limitations. I used to be a runner, 5k, 2-3 times per week, after back fraction with constantly exercise I could reach a good level, I now enjoy walking instead. New me! This level of acceptance didn’t happen in a blink, I had those days of cries and disappointment, still have them time to time, One of my favorite comments “it is ok to not be okay” so I take it easy on myself, well I try! .... Daily light activities is good for bone Mets, see Stage V MBC Fitness (couldn’t highlight it, am learning!!!)
Hello all 👋 I hope you are enjoying first day of spring.
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Prairiesea, Sorry you have to be here, but welcome. I'm so glad you found this thread to connect with people with similar stories. My story is different - I don't have bone mets and I was basically asymptomatic at diagnosis. I can't imagine the frustration of knowing something was wrong for so long, and not getting the required response from my doctors. Either way, it's a gut punch to find out you're sick and they can't really fix it.
FWIW, My own experience with targeted treatment has been good. I reached NED in 7 mos. after starting with significant liver involvement. Crossing my fingers that it continues.
I think you mentioned you were requesting and waiting for a referral for a second opinion from your MO. I went directly to my insurance company for the second opinion referral, so you may be able to check if you have that option to move things along and give you more control.
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My gratitude again to everyone, and hope you are doing reasonably well where you are on your journeys. Apparently I was supposed to have Xgeva after my consult in a couple of days, but when the nurse called today to sign me up for a genetics consult I asked about the injection appointment and she said no, the onc had cancelled that. I had rather welcomed some beginning to addressing my back and stopping more breakage (and yes, I had gone to the dentist and gotten a needed filling in anticipation), so this is a bit of a letdown. On the other hand, I'd like to have a discussion about treatment before rushing into it.
Appreciate the additional advice, Snow-drop and SeeQ. We have a "non instructional day" tomorrow (instead of Spring Break, which I could have used) so may try to call insurance and see if I can push along a second opinion referral. Also, just discovered they do have the technology for SBRT here....but as I've read more I suspect I have too many tumor sites--from cervical spine down to femur--for them to see this as practical. Happy for the genetics counseling, and what it might mean for my two daughters, though at the moment I think they'd both rather some attention was focussed on keeping me alive longer.
You all are mighty models for riding out this roller coaster.
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Prairiesea, I’m sorry they canceled the infusion. I know with my insurance, it has to be approved. My first infusion was canceled too.
When you get a chance, and only if you don’t mind, can you go in to the settings and put your diagnosis. Do you know yet whether it’s lobular or ductal?
I had genetic testing and so did my brother. We have nothing that they know of genetically driving our cancer. I worry about my daughter because of the unknown. I have a sister that just had a screening MRI just in case. No results yet.
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Thanks so much, KBL. It probably was the insurance, this onc is pretty new and I think unfamiliar with the processes here.
I have been putting off the diagnosis entry because I really don't know that much. Because it's de novo and only recently discovered, no one's even brought up where it appeared in the breast. The only thing that has appeared regarding the breast is a shadowy patch on a CT scan that was never mentioned in PET/CT report, it's really confusing. This is one of the questions for tomorrow, are they even going to look? This may be my last visit with this guy, who's really a hematologist who focuses on lymphoma and other blood diseases (and a vague reference to "Thoracic malignancies" which I suppose could include breasts, but does not seem to in most definitions). He's not specifically a breast cancer doctor, which they do have here, so I think at the very least I should be transferred over to that unit. But I also desperately want a referral to an expert outside because it looks to me like they just don't focus that much on Stage IV here, online discussions of breast treatment focus on chemotherapy. I may pay for a 2nd opinion myself if I have to, but I want to be assured that doctors covered by my insurance will listen to and implement an expert's opinion.
I'll try to put in the little bit I know from a bone biopsy--adenocarcinoma, favoring breast origin based on cytology and immunohistochemistry, which was consistent with breast cancer. That's it. Thanks again for all the encouragement on this site, it is keeping me going in a week that has me wondering if any of the medical people really care.
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Wow, true, that’s not a lot of information. I think you’re headed in the right direction. I did get a second opinion when I was diagnosed. I will tell you my oncologist told me his feelings would not be hurt if I did that. He told me he has no ego. My insurance did pay for the second opinion. I’m sorry you don’t know more yet.
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KBL, thanks so much for your concern, and again for all the kind and wise advice I've gotten here.
An update, I finally got to see my oncologist and discuss some of the strange anomalies of my diagnostic process and plans for treatment for MBC and my bone mets. The anomalies were not that clearly explained, there are elements of this process that reflected oddly relaxed attention to test reports that still make my blood burn. He had little answer for why Pet/CT Scan did not pick up the BC which he told e would surely show up there if I had it (he suggested perhaps the glucose didn't get there???). He did lay out what seemed like a reasonable treatment from what I had read here and elsewhere: Femora + Ibrance as first line treatement and a referral to Radiological Oncology which I went to today. Also eventually need to decide between Zometa and Xgeva for bone strengthening (he apparently was considering leaving me on oral Fosomax, which doesn't seem to have accomplished much in the 5 months I've been taking it). Because of my frustrating and delayed diagnosis, I did also ask about seeing someone in the clinic that focuses more on breast cancer as well as an outside 2nd opinion referral separate from the clinic. I'm afraid my trust in the management of my case is severely strained, and I want eyes on this that ensure it's all being done right. That being said, I was very encouraged by the attitude of the folks in RO. The doctor spent an hour hearing my story, had clearly looked at my record and scans, and when we looked at them together after he asked me to identify the worse points of my pain, it became clear that those points do match up with areas of significant malignancy in my spine.
Thanks so much for all the support and suggestions here. Still bummed about this diagnosis, but feel like I'm starting to get somewhere
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Prairiesea, forgive me if you already said this, but is your cancer lobular? My cancer does not ever show on a PET scan and yet I’m covered in cancer. I read an article from Gary Ulaner about if cancer doesn’t show up on a PET scan, it probably will not at any time show up on an FDG PET. This is with lobular. Unfortunately, I’ve had around four or five PET scans since 2013, and it has never once shown up.
I totally get where you’re coming from with the anger part as well. I’m about to have my first meeting in a while with my doctor, by choice. I like the nurse practitioner because she’s a female. Anyway, my last CT in January of this year says no evidence of metastatic disease. This means that CTs also do not work for me, as my lumbar and pelvic MRI in August of last year and January of this year said there was a huge progression of mets in my spine. I’m going to ask him to tell me why he thinks I should continue with these and not have MRIs instead. He better have a damn good reason. I’m mot buying it any longer.
I know all of this is very frustrating I’m glad you’ve found a place here to let out your frustrations.
Just so you know, my insurance wants patients to do Zometa first because it’s cheaper. My NP said if there were adverse reactions after the initial infusion, not including the first infusion, which kept me in bed for three days, we could ask for Xgeva. So far I’ve been okay on Zometa.
With Ibrance, I started on 125 mg. Fatigue can be rough with that dose. My neutrophils dropped so low that he immediately transferred me to 75mg and didn’t try the 100mg.Please ask away if you have any questions regarding the drugs
I’m so glad you came and gave an update please keep coming back and letting us know how the treatment is working for you.
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KBL Thanks to you I actually asked the onc in what part of the breast the cancer started, and he said quite confidently it was ductal. I see nothing in the diagnostic reports indicating this so still a mystery. Today, the RO asked if I had ever felt anything and I mentioned that in the course of waiting for diagnosis I did think I found something that felt like a small lump while in the shower; but I could never find it again, and decided to wait for the PET/CT that was coming in another week and, I had been told, would show any cancer there. RO did his own exam and said he felt something in the same place but it was not very pronounced. Thanks for sharing your own experience....perhaps it is lobular, I will continue asking. I've also since read that PET/CTs do not actually do a good job of revealing very small cancers of the breast. MRIs are apparently better, though the one indication of anything in that breast on imaging was on a plain, no-contrast CT, not an MRI. I still don't understand how a tiny primary cancer could cause such destruction when it got to the bones. Still, I am hoping the cancer can be controlled for a good while, even if I may never know how it got there.
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KBL, I am sorry about your bone Mets progression, please ask your MO if local therapy works for you. You’ve been through a lot lately, I hope your sister got good results. Very good point, I am not convinced with the necessity of 3 months scans either. while we do know the accuracy is low, in fact scans will be able to show a mass when it already grew big. Scans only capture those of my bone Mets larger than 2/5 cm! I think this 3 months- scans procedure is rather a source of income for cancer clinics/ hospitals. I am going to have a serious discussion with my MO if I get to see her!
We had quite a long discussion about local therapies (primary tumor removal/ bone Mets radiations etc). my MOs (former and current) and the neuro oncologist are not interested in local therapy, at all. if I recall correctly, Sondra had the same concern about primary tumor removal option. The more I dig the more I see successful stories, those got removed tumors or zapped as much as Mets, would go NED or NEAD for such a good long time and eventually remain in remission. It is my opinion!
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A PET/CT supposedly can detect cancers larger than about 8 mm . I don't know if they would be harder to detect in the breast. At diagnosis I had just about every imaging test known, sometimes twice. Ok not really because I didn't have a CT or a bone scan, but the surgeon wanted a second ultrasound and an MRI and then another mammo just to take pictures of where the clips were after the biopsy. And then the PET-CT but that was not for the breast imaging. That was because she suspected mets after the MRI was done.
https://imaging.cancer.gov/imaging_basics/cancer_imaging/nuclear_imaging.htmPrairie sea, If you are deciding between Xgeva and Zometa, one advantage is that Xgeva is a shot, zometa is an infusion so if you're not doing chemo and you do Zometa,it means you have to spend time at the infusion center just for a bone strengthener. My doctors did not have a problem getting Xgeva approved by insurance but every insurance is different so, that is a factor.
Here is an article comparing the two -
https://www.breastcancer.org/research-news/20120821
Good luck getting the ball rolling with your treatment.0 -
prairiesea, I’m so glad I could help in some small way. My biopsy reports are what told me it was lobular.
Olma, I had totally forgotten about that difference with the two bone strengtheners. I may see what doc says about switching at my next appointment.
Snow-drop, thank you. I heard from my sister yesterday her MRI was clear. So was mine, but I’m glad she feels better about having it done. Now that one of us has IDC and I have ILC, it’s a toss-up for my siblings if they get it.
I have too many lesions to have radiation. The doc did say if I was in pain in a spot, they could do radiation there. She mentioned my hips. They’re not bad enough for me to want to do that yet.
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Good morning, it has been awhile since my last post. I hope everyone is doing well!
I just recently had a stable scan. So far 2 years on Ibrance. Alot of bone pain & fatigue , but it still works.. I decided to stop working & currently on private LTD benefits from my work. I have not applied for SSDI yet.
For those who on Lupron, can you tell me what dose are you on? I used to be on 22.5mg every 3 months. However my new MO only gave 11.25mg this time. He said women only need 3.75mg monthly or 11.25mg every 3 months to suppress ovaries. 22.5mg is only used for prostate cancer. I appreciate if you can give some inputs on this. Hugs!!
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42young, I have to advise on Lupron but yay to LTD. Signing up for that before cancer with my employer was the best decision and SSDI has been a great help too. Enjoy the rest
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*delete*
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Congrats on stable scan and enjoy your newfound “freedom" on LTD.
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42young, sorry, I don’t know anything about Lupron.
A question for those with rib pain. Have you had left rib pain? I’ve told my onc about intermittent left rib pain for the past few months. It’s been a little worse the last few days, and it’s really bothering me today. I’m not saying it’s cancer, but how will I find out what it is? My lumbar MRI doesn’t mention my ribs. How did you find out there are mets to the ribs? I do have an annular tear in my lumbar, but I don’t know if that would have anything to do with rib pain.0 -
KBL, I'm so sorry to hear about your rib pain. I have a lot of experience with this, just recently mainly on the left, though previously it was on the right. Actually it was partly a large crack in a right rib as I was reaching for something that got me going on my spine doctor (though it was eventually taken up by my primary) to start looking more deeply for what was destroying my back. She sent me to get a "Spinal survey" which is a standard first step in diagnosing Multiple Myeloma which from Jan through early March was my presumed diagnosis, as well as a rib x-ray, which showed lucencies and a fracture in the rib that needed further investigation. I went on to a CT scan that showed multiple lesions in my ribs and spine. However, subsequent MRIs of thoracic and cervical spine didn't mention ribs, while whole body Pet/CT scan said widespread lesions throughout "axial and proximal appendicular skeleton" which I guess covers everything.
But I know you've said your cancer doesn't show up on scans, so I'm not sure how helpful this is. Perhaps that they could go back to some simpler imaging like an x-ray to see if it indicates anything? Maybe an MRI would, and whoever read mine just didn't mention it. In my experience the specificity of these reports varies hugely. To get the ribs I think the imaging would have to be of the thoracic spine, rather than, or in addition to, the lumbar spine.
THe other thing I would mention is that while there appears to be mets in my ribs, the other explanation for the pain had been related to my compression fractures. I do think that this also contributed. Rib pain is often what I felt because of the first, and worst, of these fractures, even when I didn't feel the fracture itself at first. The fracture affects the nerves along the ribs radiating out from that vertebra, and can cause muscle spasms and intense pain. So that might, sorry to say, also be something to check? I hope not, as it has been encouraging that despite your extensive mets you have been fracture free so far.
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Prairiesea, you have become very knowledgeable in a very short amount of time. I will look up thoracic MRI and see what it shows. That may be what I do. I have my appointment with my onc on the 12th and will be very blunt on how they have just ignored the fact that CTs show nothing. By then he might get an earful. I was having some spasms in that area this morning too. I’d be surprised if it’s a fracture because, as you say, I haven’t had any fractures. I’m so grateful. I have mentioned the past few months I’ve been having some pain in that area. I’m going to ask for physician notes and see if she mentions it in the reports. Thank you so much for letting me know about your left-side pain. Is it more on the side, back, or front? Mine is more in the back but the far left bottom. I’m used to the pain up and down my spine.
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