If you are not Stage IV but have questions, you may post here
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Indahood....you sound like a sweetheart and just the sort of friend we all need. Just a note of caution if you don't mind - offer but if she keeps declining, leave it for a while and just call her to see how she is or to chat about other things. There are a lot of things she might feel a bit concerned about being driven by someone if she's in a fragile state physically or she might be worried about other drivers and being involved in a crash because of the state of her bones. Last week when my son took me to the cancer centre we had a near miss - not his fault, but the other drivers' - and I immediately pictured myself with a lot of broken bones and I'm not a worrier normally. With bone mets we can't rely on our bones to hold up and it's a constant concern. I'm glad you're not going to give up on her but I just suggest that if she doesn't want to go out, she would have her reasons. It's not that we become a recluse when we're Stage IV but some of us become self protective and, although the normal impulse is to think it would do us good to get out, we're always so tired and unwell, we're just not up to it. I can only speak for myself but I know I'm not the only one.
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Hello! It's been a while since I've been here. I've looked around and I think this is the proper place to put this post, but if not let me know and I'll move it.
I've been "cancer free" for almost 10 years. About 2 months ago my back started hurting, like I pulled something, and it has progressively gotten a lot worse since. When it first started, I called my oncologist office and they told me it didn't have anything to do with my cancer dx and to see my primary care doctor. (this is a thread for another day, I am irate with these people) so, I called an orthopedic doctor in town, he did an x-ray and told me I had a collapsed disc, gave me steroids and wanted me to do physical therapy, which I refused, the pain was just too much already (turns out that was a good decision). Finally they did an MRI and there are what looks like 3 tumors on my spine and some other suspicious spots. Ortho doc seems convinced its mets, actually said it can't be anything else (is this true? can it really not be anything else?) I'm not too trusting of him at the moment as he originally said I had a collapsed disc which is NOT what I have at all.
I have an appointment with my Oncologist on Tuesday (he will hear that I was turned away when I called in February, believe that) Has anyone had mets show up after 10 cancer free years? Can this really be nothing else?? I'm scared, pissed quite frankly, and in pain. If it is mets, is there any relief in sight? I can't live in this much pain.
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BigPeaches-I do not blame you for being livid. The prudent oncologist will draw serum tumor markers and review the imaging. He or she may order more imaging. This needs to be checked out to your satisfaction. It is possible to have mets after 10 years cancer free.
There is relief in sight. Many gals have had painful spinal mets treated with radiation with great success. If you do have mets, you will likely be started on a systemic treatment. Don't panic, it will not be like the chemo first time around-much more gentle and won't totally disrupt your life. Bone mets are manageable and can be stabilized for years.
Hopefully, these are not bone mets, and things will be resolved by orthopedic methods/ physical therapy. Don't rule out switching oncologists if you are not satisfied.
May the force be with you. MJH
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Hi BigPeaches and yes, you are definitely in the right thread. Oh what a time you have had over the last few months, I can fully understand why you would be upset with all medicos right now.
You ask if mets can show up after being 'cancer free' for ten years and unfortunately the answer is a resounding yes. In fact they can show up at any time even thirty years out from original diagnosis.
Not being a doc nor having seen your CT it is difficult to say exactly what is showing up but it is very possible that the Ortho doc is correct in his reading of your CT. Please, try not to go to dark places or let your fear take control..........if mets are confirmed there are innumerable treatments available and no, you don't have to live with that pain. Should your onc agree with what has been said it is more than likely that he will order some radiation to those spots which will give some relief as we all treatment drugs and pain killers so your life can be lived with dignity.
It's also possible that he will order other scans just to make sure that if it is mets, that they are not anywhere else. Take a deep breath, I know what you face is another daunting prospect of having to deal with cancer all over again but even now, it is still possible to achieve a good quality of and lengthy life.
Love n hugs. Chrissy
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Thank you, this is first bit of positive thoughts I've had in several days.
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Big Peaches - I am saying a prayer for you that this is not bone mets! If it is, however, I echo what the other ladies have said. It is a shock, and it is hard to digest, but the dark feelings will get better. There are many treatments out there. If I can suggest one thing, I see that you were Her2 positive. If mets are suspected, please insist on a biopsy. That is the only way to check if the cancer is still Her2 positive. Either way, plenty of treatments, but you want to ensure that you are receiving the right treatment for your disease. Please let us know how you are.
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BigPeaches, I'm sitting here wondering how your onc's office could tell you over the phone and without seeing you that your back pain has nothing to do with your original dx?! If that came from an inexperienced staffer, perhaps it can be overlooked after mentioning it to your onc when you see him. OTOH, if that's representative of the extent of knowledge and follow up interest in that office, that's not the kind of care you or any of us needs.
As others have said, bone mets only -- IF that's even what it is -- is very treatable, with a very good long range prognosis. Do not believe anything you may come across on the internet, as newer txs in recent years have made a big difference in survival. One day and one step at a time, but I just wanted to encourage you to listen closely to your gut about your current onc when you see him. And an MRI, while helpful for ortho issues, is probably not sufficient alone to dx bone mets. Ideally you should now because of the concern (suggested by a doc I don't have confidence in either from your description), you should have a whole body PET or PET/CT, as well as total blood work, including tumor markers and liver functions.
Good luck, and I'll be watching for an update! Hugs, Deanna
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Yeah, Deanna, regarding nurses on the phone — Five whole months before I finally got the liver mets diagnosed, I called the oncologist’s office to say I had experienced pain that I was concerned could be liver pain. It took a lot of courage to call. The nurse (not the onc’s usual nurse by the way) told me that it did not sound like liver mets, because if it was liver mets the pain would not have subsided. Wrong. She told me to see my PCP, who did not follow up diligently. I can’t help but wonder if I could have safely used hormonal therapy instead of chemo if I had started treatment when I first reported symptoms, and kept my long hair. Moral of the story: If you have symptoms, insist on seeing the oncologist and not just talking with a nurse on the phone.
Hugs to you, Peaches. I’m glad you have an appointment soon, and I hope this is a false alarm.
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Well, my oncologist office just called and I already have radiation scheduled for tomorrow before I even see the doctor and he's called in some steroids for me. He must feel pretty confidant its mets. I'll keep you updated after my appointment tomorrow. I'm confused, scared, and all the things I'm sure you are all familar with. *sigh*
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HI everyone. I am looking for some advice. I completed my rads the end of October. I saw the MO in November. At that time I reported to her that I had been having rib pain, constant dull, feels better when moving, for 3 weeks. I was also experiencing abdominal bloating. She said it was too early for mets but did liver function blood work, abdominal ultra sound and bone scan. All came back fine. I am still in the same situation accept my rib pain is worse, I am in tears at times, I even take the occassional narcotic for the pain. The bloating is better though. My MO sent me to family doctor who did xray, urinalysis, pelvic US. All came back normal. I had repeat US other than fibroids nothing worrisome. I still have so much rib pain. it is constant. Worse at times, feels better when I am walking. Hard to pinpoint exact area, radiates front to back of ribs and into jaw. I am thinking of bone mets, can a bone scan miss this? Any suggestions? I will go back to my Family doctor but he is remiss of what to do next.
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Hi BigPeaches, I'm hoping Deanna will weigh before you go off to your radiation appointment tomorrow. I wanted to offer my thoughts too. I'm a bit worried about your Oncs rush to rads. I totally understand if you are having significant pain that the rads can help. But, I know I find it helpful to have the whole picture before jumping in. I know a series of tests was recommended earlier (PET, tumor markers, liver function, etc...). I totally agree those are very important to do. Also, what about a biopsy of the new tumors so that you can know whether the receptor types have changed. That's critical for long-term therapy. And is rads enough, does their need to be surgery to stabilize your spine?
I also want to join the encouragers. Bone mets can be treated for a long time, and the early treatments are pretty tolerable for most. I'm in this now a little of 2 years with mets to my hip bone and have had a great response to treatment so far. My story is very common.
Come on over to the bone mets thread and you'll find some folks who have had mets to spine and I'm sure they can offer some good experience.
Big hugs!
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BigPeaches! First, I am so sorry for what it sounds like you might be dealing with. But, I couldn't agree more with Jen, who said it perfectly. It really does sound like you are being rushed into tx without having a full picture of your situation. Unless you are truly in agonizing pain, the rush to treat with R/T may not be in your best interests, as there is a limit to how much radiation any of us can have, especially to a particular area. And so many times simply getting on the right med will make a huge difference in your pain level very quickly, thus saving the R/T for possible future use. I would urge you to find out exactly how big those 3 lesions are, as well as how it was determined they're absolutely mbc, and why R/T is being recommended. If any of your lesions are huge or pressing on a nerve and causing pain that affects your QOL or ability to walk, starting rads as quickly as possible might be a blessing. But short of that, I totally agree with Jen that this seems oddly rushed when you haven't even seen your onc yet and may not have a clear picture of the situation.
Keep us posted!!!
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Hi, Nan. Hmmm... so many things to consider about your post. First, I was a bit taken aback at your onc's comment re. "too early for mets," as I don't believe there's a timeline or chart to predict a recurrence. But, that said, I don't necessarily think that's what you're dealing with, since the tests you've had have been clear, and a bone scan would have shown something as painful as you're reporting.
My first thought is maybe a hairline rib fracture that isn't showing up on x-ray. Do you recall any injury or stress to your ribs around the time the pain started? Is the rib pain only on one side? The fact that the pain radiates into your jaw is also concerning. Without knowing your age or full medical hx, I think checking out your heart would be prudent. Otherwise, I'm thinking something going on under your ribs, or perhaps referred pain that's actually coming from something out of place in your spine.
If I was in your situation, with pain as bad as you're describing, I would push for a PET scan, which should show more than either an x-ray or u/s will.
Absolutely let us know what you find out. The pain you're experiencing needs an explanation. Don't be afraid to advocate for yourself. Hugs, Deanna
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BigPeaches, sorry to hear how you're feeling. Hoping for the best for you.
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I appreciate the concern and thoughts, more than I can say. The spine doctor told me that one of the tumors has already ate thru a good portion of the bone and one wrong move and I could be paralyzed. I'm in a back brace and can't walk without a walker, I assume that's the reason for the rush to rads. Spine doc scared me and I think he meant to, he seems very serious about all of it.
I'll let you all know what the onc says, he better have carved out some time for me because I have a long list of things to go over.
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BigPeaches-thinking of you and know that relief is on the way. get all of your questions answered and make sure the upcoming treatment makes sense to you. Best, MJH
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Nan-ask for a PET scan.
Best, MJH
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Thanks everyone, i have booked an appointment ( again lol) with my family doctor i am beginning to feel like a pest. I also called my onc, waiting call back. Pain is ever present so we need to get to the bottom of it. I will ask for a PET scan. BTW it is on my right side so not cardiac sorry i forget to say which side, same side as my cancer.
Big Peaches, all the best i am thinking of you!
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Nan.... I don't often post on this thread but I do read it. I concur with Deanna. The bone scan would definitely have shown up rib mets that are so painful so I'd ask for a PET scan and other investigations. I have a lot of rib mets, at least one on every rib and, before tx started, I had stress fractures in all of them and the pain was nothing like the pain you're describing. It was sharp, intense and much, much worse on moving. I had to lie completely still in bed and could not turn over onto my side.
BigPeaches....I'm so glad you didn't follow the advice you were given to do physical therapy. I'm glad you now have your back stabilised before it was too late. I hope your appointment with your oncologist shows he has a good plan of management for you. Big hugs
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hello. my dear friend was diagnosed with stage 4 june 2015. since then it's been a roller coaster from hospice in 2015 to travel in 2016 to brain mets and WBRT in march of 2017 -- she will be a 3 yr survivor in june.. she had a stroke Monday.. I'm her person. we were colleagues and neither of us are married (she is a widow). She moved in with me, I retired early and I watch out for her, take her to appointments. We are the best of friends. And I am so very sad right now....the stroke happened this past monday, it's taken some of her umph...her speech, her quickness. I'm worried and can't sleep... I can't seem to find much on the internet about what happens now....she has been on a regimen of herceptin and tratruzamid (not sure of the spelling) every 3 weeks. She had a treatment last friday and then a stroke]Monday morning. That is when I noticed her speech slurring.
At the hospital I learned for the first time that WBRT increases the likelihood of stroke. Does anyone have experience with stage 4, brain mets, WBRT and stroke? What should I be doing? Usually I read up on any treatment options and pepper her docs with questions so she gets the best chance given the treatment options....but this time I feel like the wind got knocked out of me and I don't know quite what to do next. Haven't found anything online to help.
Any recent research on best next steps? Tips? Suggestions? Many thanks..
( Man, does cancer suck.)
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Beth, I'm so sorry about your friend. Hopefully, with time and therapy, she will heal and recover from this setback. In the meantime, the thread here on BCO where I think you may find insight and support is this one. https://community.breastcancer.org/forum/8/topics/777599?page=198#post_5159846
Hopefully your friend is being treated at a major medical center where they have all the necessary experts working together to coordinate her care. That seems important to me when you are dealing with multiple needs, meds, and therapy — that her docs are all working together, and not leaving it up to you to piece together the care she needs. If necessary, get a second opinion. Not all docs will think alike about treatment options.
My only other thought is, depending on how severe her stroke issues turn out to be, be sure you are listening to and honoring her needs, which at some point might mean hospice if the stroke was to make taking mbc meds too risky.
Hugs to you both, and please keep us posted. I'm sorry you'reboth going through this, but thankful she has you ther as a caregiver and friend.Deanna
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Thank you Deanna. I sent her oncologist an email to get an appointment to discuss next steps. No one had said anything yet about her treatment cycle...to continue or take a break.
Your response was very helpful and a bright spot to my day. Thank you. Happy Easter too.
Beth
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Beth, I agree with Deanna about coordination. If everyone seems like they are spinning their wheels the best thing you can do is ask who is in charge. Whoever that is should be discussing with all the doctors and providing your friend (and you) with information.
If you don't trust that person you'll end up having to talk with all the doctors yourself and that may drive you crazy.
to answer your specific question you should talk with the Neurologist. Most cancer centers have consultants they work with regularly. So there should be a cancer neurologist seeing your friend and helping make decisions.
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I have a question that hopefully I never have to find out the answer for myself.
What happens next in terms of treatment after a diagnosis of MBC?
I ask because before I was diagnosed with breast cancer I had little idea that treatment would start almost immediately and there would be so much and for so long. My life was fairly much on hold for the next nine or ten months. So I guess I am curious: how intense is treatment once you are metastatic?
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Hi, I posted back in February I believe about really bad muscle and bone pain that wouldn’t go away even 2 months after chemo. You great ladies suggested waiting until after radiation to see how I felt, that what I was describing didn’t sound like bone mets, but that if my anxiety was that high to ask for a scan.
I just wanted to thank you for your words ofwisdom. I calmed down, kept a log of the pain and spoke to my MO. About 100 days after chemo and a month after rads my pain started to subside.
Just wanted to say thank you for being here for us when we panic. It really is a great thing you do.
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Hi BlueKoala, depending on what type of mets, how many and where are will dictate to a certain degree on what treatment is given. It's unfortunate but MBC is incurable so the main aim is to stabilize the disease while maintaining the best quality of life possible for the patient.
Treatment can be radiation, AI's, oral chemo or intravenous chemo.......again depending on the person's disease. The trending thought is, if at all possible, to start with the 'easier' drugs and leave the the others for later. Because MBC is incurable once begun, treatment will not stop........although there are rare cases when this can happen.
Hi VL22, so glad to hear that your pain is subsiding.
Love n hugs. Chrissy
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Over the last few weeks I've observed an increase in pain on the right side. Below the ribs and to the right of the belly button. I have this pain/pull feeling, sometimes sharp. It's inconsistent but present. It's heighted when I bend down (ie to tie a shoe it hurts) but doesn't hurt if I push on it sitting or standing.
I have an appt with onc on Monday but coming here to learn more about what the pain feels like if it has metastasized to the liver.
This is a very different pain then I've experienced in the past. I had a scan January last year and it said:Gallbladder, Pancreas, bladder, Liver and spleen unremarkable. Lung bases are clear. Clips are seen in abdomen. Small umbilical hernia is seen containing only fat, with no inflammation.
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jenjenl- I think that your MO will order some blood work and perhaps some sort of scan. Your pain does sound somewhat similar to what I experienced with liver mets. That being said, there are other things that might cause pain in the right upper quadrant, such as gallbladder issues. The umbilical hernia may have changed. The important thing is that this pain be investigated to rule out mets and that you feel satisfied. A PET scan is most likely the best way to do that. Best to you, MJH
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Hello and thank you for providing a place to ask questions. I was recently diagnosed with depression and my doctor prescribed Effexor. He said that this would also help with some of the issues that come along with menopause such as hot flashes, etc. I know this may sound crazy but feel compelled to ask. Have any of you taken this and in retrospect wish you had not? I guess I have spent so long being used to only meds that rob you of estrogen I am paranoid about anything in terms of something triggering a recurrence. Again I apologize if this seems ridiculous, but had to ask.
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Jenjenl, I agree with MJH that checking liver enzymes is a good idea, and also that there are other non-cancer possible causes for your pain. I would caution you not to rely only on the liver enzyme results as they can be in normal range even when there is a problem, as was the case with me. As far as scans, I first had an abdominal ultrasound, and when that showed a problem, I had a PET-CT.
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