De Novo Stage IV
Comments
-
KBL, it sounds like my rib pain is a little higher than yours, and the imaging reports that do mention it said in at least one case something about the "third rib". That was about the right rib, I think, but the recent left rib pain has been at about the same point....about the same height as my breasts, actually. Also at the same height as my most problematic fracture. The left pain has been just around the back....I plan to mention it to the breast cancer specialist I'm seeing tomorrow, because it appeared simultaneously with growing underarm pain and I wonder if it's linked somehow to lymph nodes that were/are perhaps involved in the spread of the cancer. The right side pain that I've had longer wrapped around my side.
If you are having spasms you might want to ask for a muscle relaxer. I had sometimes agonizing spasms when my compression fracture was at it's worst, can't-get-out-of-bed-on-my-own phase, which was for about two weeks in early Nov. I was prescribed Cyclobenzaprine tablets starting in early 2020 when various kinds of pain that led here first started, 10mg, which at my primary's advice in Nov. I cut in half for a 5 mg dose because they made me too sleepy. I was advised to only take it before bed because it makes you so tired, and did, and it definitely helped control the spasms and helped me sleep. But even at the lower dose it made me tired the next day too, and I got off as soon as I could. But it definitely did the needful in the meantime.
I think like you I've learned a lot because I spent so long with no one being willing to investigate fully what was going on, so I had to do research and suggest directions we/they might go. I remain very angry about this....I'm supposed to be advancing my own work in my field of research, on which I a now even further behind, not doing theirs. But it has provided me with a lot of information.
I have to admit fatigue is one of my biggest fears about the various treatments being proposed now, and I will be eager to get suggestions about how to cope. I am in the middle of a semester of teaching and plan to muscle through, and have beat back demands for me to take on a bigger teaching load next year without having to reveal too much about what's going on. But I'm nervous about how I will continue working which I would like to do....somewhat in denial, I think, about how this is going to transform my life. So far doctors/medication nurses etc. are all reassuring about SEs but I am wary on the basis of some of the experiences I've read about here. On top of this I'm under new pressure to take the Tramadol that was also preecribed back in January but I have avoided because I want to delay the opioid path as long as possible. Balancing the effects of pain/disease against the effects of treatment feels like a new issue I will have to come to terms with in the next weeks.
I do hope you get answers, better imaging suggestions, and someone addresses your rib pain issues soon!
0 -
KBL, constant pain is annoying I hear you, I hope your MO will figure it out soon. Yes MRI will give you more accurate information. Just wanted to add my experience, Spine MRIs only focus on spine including bones, nerves, canal unless your physician indicated to include images of ribs, please make sure he will do that.
In my case I have to do spine MRI every few months, the main focus is on lesion spread to my epidural space so the neuro oncologist-who place the order- does not care about bone Mets unless those Mets affect liquid/canal.
In my last bone scan back in September, the radiologist used “weird activities” in my right ribs! and suggested pet scan, pet scan didn’t capture anything in there though. The shooting pain in that area getting worth since 3 months ago. once it happened in grocery store when the shooting pain made me jump, it was sever but after several minutes resolved. Since then I have this kind of pain time to time. I don’t have rib fracture but I do have vertebrae fractured- that pain is 100% intolerable even with Morphine.I haven’t discussed rib pain with my MO yet, but I read here and there that this kind of pain is quite common in our case ie bone Mets and being on hormonal therapy, because hormone blocker medications can cause bone loss which may cause pain, also bone strengthener medications sometimes cause bone pain as well.
0 -
Hello Everyone,
I have a question which for some my be simple. Once diagnosed with Stage 4 and your particular type does the cancer treatment treat all Mets regardless of where they are? For example: I am ER/PR positive HER 2 negative in breast and liver. I am on Ibrance 125 Letrozole 2.5 with monthly Zoladex injections. I’ve only had 1 cycle of the Ibrance. I have never had any other chemo or radiation. I am having tenderness in my ribs farther down from my biopsy site. The biopsy site is about 5 weeks old. I just began with this discomfort a couple days ago. Should I even be concerned because I’ve only just started treatment? I heard tumors sometimes do get bigger and it requires several months on current treatment to see progress. Would the Ibrance stop the bone Mets if it spread to ribs? All this is new, I don’t want to over react but I don’t want to miss something. Thanks.
0 -
Lost - you should talk to DR about anything that seems to start with a new treatment.
0 -
lost47,
Systemic treatments such as chemo would be used and target all mets. That being said, some chemos seem to work better at certain metastatic sites. For instance a chemo drug has to be able to cross the blood brain barrier to fight brain mets. Targeted therapy, like radiation, is focused on a specific area and therefore would have no effect on mets in other areas.
I have been living with mbc for almost 10 years. I also have never had chemo. I have a single met to my upper femur which has been inactive since I had rads to that area many years ago. I have been on one AI or the other since then and have had no progression. Ibrance and Verzenio hadn’t even been approved back then so I have never used those either.
0 -
prairiesea, thank you, again, for the information you’re sharing. I hate taking meds, so I will hold off as long as possible. I hate them too.
I was working lots of hours when I was out in medication. Although I only took the 125 mg for one month and was very fatigued, I continued to work. I did stop working last year in May. I was at a point where I was working too much and didn’t know how to say no, so I stopped. I’m very happy with that decision. I have a grandbaby that I get to enjoy a lot.
Can you please keep me posted what your MO says about your rib pain. I’m going out of town this week on Thursday for four days. I refuse to let the pain stop me. I’ll worry about when I get back. I’ve been taking Naproxen and icing. Not sure if that will even help, but that’s it for now.
Snow-drop, thank you for responding as well. I will definitely be speaking about the different MRIs that are possible.
I am on Zometa, but I haven’t had an infusion since January. We switched to every three months. I’m having an infusion at my next visit. mom sorry you’re having a lot of pain as well. Please keep me posted if and when you talk to your doctor about your ribs.
Lost47, I have mets in my spine and stomach. I’m on Ibrance and Letrozole, and I’m also ER+/PR+, HER2-.
0 -
KBL, I had some left rib pain last year, an X-ray ruled out fractures and I had no mets in that location. The radiologist noted some minor issue with the connective tissue, if I recall correctly but the official finding was that it was activity related and also due to severe coughing and vomiting actions when I had the worst of my swallowing problems. One of those scary things that turned out to be nothing, we get those a lot.
Lost, yes, in general systemic treatment works on all areas of the body, regardless of location. The only exception to this really is the brain as most drugs cannot cross the barrier. I realize your not asking about that specifically, just an FYI.
0 -
Thank you, Mae. It has settled a little bit. It still hurts but not as bad. I actually slept from 8:45 to 4:30. I wish I could bottle sleeping through the night.
Scratch that. The pain is back. Ugh. I am going to hold on and not call my doctor until I get back from my trip. I'm not ruining this thing for my husband. I will put on my smile and pretend. He doesn't like when I do that.
0 -
I am denovo. No cancer in either of the breasts.
I had been seeing my general prac for about a year for for "severe IBS". Even after all the medication, and food changes, nothing helped. It just got worse. The dr did x-rays and bloodwork to make sure that it wasn't really related to my gallbladder. I thought he was a good doctor. I think he was just young.
The pain was in my abdominal area. It would move. It would go from one side to another, or just everything from my breasts to my vulva hurt. Moving hurt. Staying still hurt. Even the oxy that I was prescribed for my neuropathy didn't help. It usually made it worse, because then I would be constipated, instead of the normal diarrhea I usually had, and bearing down hurt.
I finally went to the emergency room in an ambulance because I was in so much pain I couldn't get off the couch where I had been "sleeping". I got there around 9 AM. Around 8 PM, after a battery of tests and scans, the original doctor that saw me in the morning came in. I felt so sorry for him. He was young, and I could tell he wasn't sure what he should say. I could tell it in his face. I told him, "Just tell me straight." His response changed my life. "You have terminal bone cancer. The pain you've had is because you have hundreds of fractures in your pelvis, spine, and ribs. What your doctor thought was IBS was because you have had too much calcium released from your bones as it was eaten by the cancer and affected your digestion. You have 2-5 years." That was July 11, 2019.
That's my story.
1 -
Heidi,
Welcome. I do have one question. The doctor stated you had terminal bone cancer, not breast cancer. Breast cancer that has metastasized to the bone is still breast cancer. Bone cancer is a different animal altogether. They are not treated the same way. So do you have bone or breast cancer?
I am sorry he said terminal. That sounds rather immediate . No one has a crystal ball but it is possible to survive for many years, though for most of us it will be terminal at some point. I am almost at my 10 year anniversary with a single bone met. Take care.
0 -
He said bone cancer because I was in the ER, and they didn't know at the time that it was actually mets. They found that out a couple of days later after looking at the biopsy.
0 -
Heidigwotr, I’m so glad you’ve come to this thread. I’m so sorry you’ve had so much pain and no answer for quite a long time. Do you know if your cancer is lobular or ductal? Are you ER+/PR+, HER2-? I hope you don’t mind me asking. I hope you’re getting relief from the pain now.
0 -
Heidi,
Thanks for clearing that up. I know it may not be easy but try to not dwell on what if's or maybe's. It's hard to wait but once you have the specifics of your bc it will be easier to narryour focus and the plan treatments. All the best
0 -
KBL:
My diagnosis is "metastatic breast cancer (lobular) with spread to bone, occult primary (MR negative), ER+ 95%/PR-/HER2-, PIK3CA mutant."
I was on daily chemo pills for a year, and now I'm on Ibrance & Letrozole. At first, they put me in a physical rehab place for over a month to let my bones heal. Most days now, the pain is tolerable, but the past few days it's been pretty bad. I can't take the oxy that they've prescribed during the day because I work. And, I can't take any form of CBD because I work for the State. So, that leaves Tylenol, and it just hasn't been cutting it the past few days. I know that bone-pain can be a side-effect of the meds so I'm just trying to muscle through.
I was actually told about these forums from an online friend. My sister suddenly died last week from a massive heart attack, and the past few days I've felt like I'm back to the beginning from when I got my diagnosis. Like the last almost 2 years of emotional work has not happened.
0 -
Mine is lobular as well. It's a sneaky ass cancer. Mine does not show to this day on PET or CT. It shows up on spinal MRIs only. I learned it went to my stomach because I had lost 17 pounds very quickly and couldn't eat more than a few bites without being immediately full. I had an endoscopy, and the biopsy found it.
I'm so sorry about your sister. I can't even imagine how you feel
Just so you know, and I'm not saying to do this, but there is a compassionate allowance for Stage IV where you can apply for Social Security Disability and be approved. I only let you know for future reference in case you didn't know.
0 -
prairiesea, I decided to call the doc for the muscle relaxer. I’m going to take it for a few nights before I leave and see how I feel the next day. She also asked if I wanted Tramadol, but I said no. I’m not into taking pain meds other than the Naproxen right now.
0 -
Heidig, wow, so sorry to hear what you have had to endure. I feel angry reading this, your primary care doctor could have detected the hypercalcemia much sooner if he had just done some blood work. Not that complicated. Seems more should be done for someone who is reporting constant pain. I’m so sorry.
A tip for when you’re home, if you haven’t tried it - heat can help some with achy bones. If you haven’t tried yet, look into the heated blankets and mattress pads. Could be soothing for when you’re resting.
Take care.
0 -
Thank you Illimae, Olma & KBL.
0 -
Heidigwotr....I am so sorry, for your pain misdiagnosed for so long, and your recent loss. Identify with both....but mainly now sending comforting thoughts your way.
KBL, glad to hear you are going to try the muscle relaxers....when needed they can be very helpful at a low dose at night. Definitely calmed my spasms and helped me get sleep when I did need it. I hope your trip away goes well.
As for me, wondering how much others just get fed up with doctors. Yesterday was very hard….had a consult with local Breast Cancer doctor part of my local cancer center because I thought it maybe better to see more of a specialist than my hematologist. In the meantime the Radiation Onc I saw last Friday to start rads to back for pain and tumor-threatened femur to stave off fracture (started yesterday) had put in a long note indicating that he thought it was important to consider the possibility that I have both metastatic breast cancer and multiple myeloma given the pattern and type of my bone lesions. Not welcome news if true, but I did welcome him raising it as I'd wondered the same thing as I do have some kind of monoclonal gammopathy and even when less developed it can cause bone destruction. I'm concerned they'll get so wedded to the breast cancer dx (based on biopsy of one lesion of hundreds) that if progression happens they'll repeatedly throw breast cancer drugs at it without considering that there's more going on. Have good reason to think so because when Multiple Myeloma dx started looking iffy they refused to even consider breast cancer despite notes in CT scan about questionable density in breast. Onc just told me it would show up in PET/CT, which it did not.
But BC doctor was totally dismissive of Rad Onc's ideas, actually dismissive of any questions I might have and told me to go back to the hematology onc who after all had diagnosed and prescribed the right things. Sent me into a tailspin of emotions and crying that I think I've been holding back for months. Not helped by hematology onc's nurse calling to ask which doctor I was seeing now: a good question as both seem to want to cast me off for asking too many questions. I know their lives are pressured and am trying to be understanding, but frankly when a doctor repeatedly does not know everything in a pathology report (such as the fact that the test reported on was not done by the Interventional Radiologist he had discussed the biopsy with, and therefore was not done as he expected), I get worried. Do I go back to the young inexperienced hematology onc and say ok we can go forward but you need to read the test reports so I don't have to tell you important items in them? Try another doctor in same facility, though the onc.s, except for the one RO, seem to all support each other? Keep pressing for an outside second opinion?
Sorry for the rant, I guess I'm not done being frustrated. In the midst of this a social worker called to follow up on things I might be concerned about and got an earfull. We'll see where that goes.
0 -
prairiesea, don't apologize for the rant. You have every right, and that's why we're here. I would definitely get a second opinion. That is not up to your current provider. I have heard of some ladies on this site who see a MO at MDACC, who manages their care, and the local team administers it. I don't know the details. Maybe someone else can remember who that was?
0 -
I agree with SeeQ - this is getting into potential realms of complexity that your local hospital just may not have a) ever seen or b) know how to comfortably deal with this. I think I've read that MD Anderson does a second opinion service where you send your info down to them and your local docs can then administer the treatment. Again, I hope someone in that position shows up,but there is no reason for you to get stuck with being passed from pillar to post just because you don't fit into the nice comfy box of a 60+ yr old woman with Stage 1, Grade 1 IDC. (no offense to any ladies with those stats!
)0 -
Prairiesea,
How far away are you from Chicago? I've had excellent care at Northwestern Hospital and it might be worth for you to establish a relationship with one of the MO's there for second opinions, consulting, etc. No doctors are perfect but I have always felt cared about and free to ask questions, etc.
0 -
Prairiesea,
I'm right there with you. My husband told me this afternoon that my cancer center has a big bulletin board with my picture on it, saying "Not Wanted" because I ask too many questions. My response -- it's my life. I don't care if they don't like my questions, or if I go to another doc, or whatever.
I am going through some stuff now with my docs as well, and yes, it is the most frustrating thing ever. All of a sudden they are falling all over me -- probably because I told one of the docs that they needed to get their act together bc they were giving conflicting advice.
Hang in there and stand up for yourself. Once you settle down, you'll figure out what path you should take. Good luck.
0 -
Thanks so much SeeQ, SondraF and Chicagoan. Our clinic sets up 2nd opinion referrals to both Barnes (Siteman Center) and Northwestern that are covered by insurance....I actually wanted to go to Northwestern (sadly, I know a number of people seen and sometimes treated there for Lymphoma/Leukemia there to at least short-term good effect) but the approval takes longer there than Barnes and my diagnosis has been so drawn out I've ended up going to Barnes, though I'd rather stay in Illinois and go to a more familiar city (no offense to St. Louis folk). I'm also a little leery about going to the major research center with the better contact to here because I want an independent opinion...however when I went for an orthopedic oncology referral for my back they were very thorough and said I should really have a definitive diagnosis and treatment, not surgery. I got a call today with an appointment with a medical oncologist who focuses on breast metastisis who the medical assistant also said was consulting with their myeloma specialist, so if we can just get this covered things are looking up in that sense. They said they actually want to retest all my sample slides, so.....if that's possible I guess it's a good idea. Sweet medical assistant said she'd been praying for me since she'd talked to me yesterday....treatment isin a way more urgent but I appreciate her concern. I was actually able to teach my class that followed immediately with more composure than I thought I'd have today.(Sorry about m's in bold....my "m" key is not working and I have to paste the all in, sometimes they just show up in bold).
0 -
Prairiesea, I’m sorry for everything you’re going through and the unknown. I think that’s the worst part, the unknown.
I’m so grateful for all of you here.
0 -
Thanks BevJen....I have been thinking of you because I recall you mentioning "Bev" questions tiring out your doctors....I expect I'm doing the same. When I helped manage my mother's care in these same clinics I think I already got a reputation then. Sorry to hear about the conflicting advice. I thought clinics had tumor boards and things where doctors talk to each other. Sounds like as for me, it feels like their communication all goes through the patient. Though I suppose there is some control in that; I'd just like to imagine a brief conversation in which they compare notes and try to make sense of the complexities of the case.
Thanks KBL...yes, unknown is difficult, and sometimes unavoidable I guess. Thanks also for all you do, and have done by starting this space.
0 -
Prairiesea,
Funny coincidence -- I take it that you're a college prof? Until I retired in June 2020, that's what I did. Maybe that's why we ask so many questions!
0 -
Never apologize for asking questions. Whether it is a dx, proposed treatment plan, or whatever. Your body, your health, your life. I also ask a lot of questions (not a professor). It seems like many of the treatments can have serious SEs, wanting to know about those, options, how SEs addressed - it is our right!
0 -
I’m so appreciative of you all. I can’t wait for my doc appointment coming up where I tell him I refuse to have another CT, as they show nothing. I will demand MRIs only. If insurance denies, to hell with them. I’ll pay for them myself.
That’s very interesting that BevJen and prairiesea are professors. It’s always nice to have something else in common besides cancer.
0 -
Yes, I am a college professor. I do think my discipline contributes somewhat to what frustrates me about doctors..... it dictates perspectives like "can't think about two possible causes for something? What world do you live in/study?" However, I also realize that I'm not having to consider time-bound questions on which people's lives depend in the way that doctors do, so I've been trying to recognize the different contexts. I also think the way health care works here, they're often not given a chance to take the care we should be able to expect; but I'm wary about cutting too much slack for this, since I think my life depends on them pushing back.
Questions are definitely what I do.... though plenty of other walks of life do too, as BlueGirl says. Also just this whole cancer life necessitates it, I agree. Also agree with KBL that as valuable as everyone's experiences are here for understanding this life, it's nice to see the other parts too, like her grandchild, for example. There's so much to live for.
0
