If you are not Stage IV but have questions, you may post here
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i have been having sharp intermittent knee pain for 6 months. When I take pain reliever it helps but it feels like it is under knee cap. No history of injury. Pain comes in waves at times then it will be fine for hours. I was just dx with BC 3 months ago and the pain really hasn't worsened.
I hear knee Mets is rare but is there anyone out there who had knee Mets and knows what it feels like? My massage therapist thinks it is a MCL strain but he finds it odd that it has lasted so long. No stability issues no weakness
I appreciate your help
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Tpraiph, mets showing up in a knee is extremely doubtful, and sharp intermittent pain doesn't sound like bone mets pain either, which is much more often a deep, dull aching or burning pain. Have you had an MRI of your knee? It sounds like you have an injury or some sort of degeneration issue. And if it's lasted for 6 mos., it really needs to be checked out with an ortho doc. Please keep us posted on what you find out, but I would be shocked if it has anything to do with your bc.
As far as this thread... Yes, it is specifically for those who are not Stage IV but have a concern or fear about something going on and want to ask someone who has had a Stage IV dx and is living with metastatic disease for input. The space was created as a safe place to ask questions when someone is wondering if their pain or other concern could be mets -- rather than barging in on other Stage IV threads. I believe MinusTwo's comments about keeping the integrity of this thread were directed at a couple of earlier posts that were looking for more general information and support.
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NancyHB, it doesn't seem to have any rhyme or reason sometimes. It interesting that you didn't have any pain where the Mets were. Thanks for telling meyour story. I really appreciate it. It gives me good insight.
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Well now dlb834 what you're describing is exactly what I'm feeling deep dull aching pain. My oncologist ignored me and now my knee surgeonisn't willing to do the mri he was going to do before my 2nd surgery.
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kira, mets rarely show up in knees, so I wouldn't worry about your dull ache being bc-related. Sharp pains aren't the most common type of pain from bone pain, but that doesn't mean that all dull pain is mets related. With knees, it's far more likely to be something degenerative. But I don't understand why your knee surgeon won't do an MRI to figure out what's going on.
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Tpralph - I've been having hip, lower back, quad, behind knee cap, and tibial pain getting more intense in last few weeks that originally vaguely started with a fall last December on the opposing hip. I mentioned the hip and quad part to my MO (comes and goes, dull ache) and she didn't seemed concerned though offered an MRI (3 weeks ago). Now it has gotten worse, but still comes and goes and I feel it as you describe your knee pain. I may still avail myself of the MRI if it continues, but one of the things Dr. Google led me to was a form of sciatica, but with the femoral nerve. Sometimes the origin of pain is hard to pinpoint if a pinched nerve. Now a tumor can be a cause of pinched nerve, but many other things too (or so I've convinced myself).
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Hi all, hope you are doing well.
About 3 weeks before my DIEP flap surgery, I started having some deep aching pains in my left hip and right shoulder. I finally gave in and called my MO 4 days before surgery, just to let her know. She initially said she wasn't too worried, but the next day called me back and wanted to do X-rays just to be safe, before surgery. X-rays came back clear.
Then I had surgery, and everything hurt, plus I was on a steady stream of Norco, and was just lying around in a recliner all day every day, so I was fine.
Monday, I had my normal 3-month checkup with my MO, and she asked about the pain, and I told her exactly what I said above...basically, I have no clue if the pain is still there or not. I was feeling good Monday, so I ran several errands, and visited with friends, and was basically out and about for 6 hours. And wouldn't you know, around 8pm, as I was standing in my neighbor's kitchen and shifted my weight, I was immediately reminded of what the hip pain feels like. And later that evening, the shoulder.
So, I guess I'm just curious for those of you with bone mets, does this sound right? I can't find much via google regarding activity levels and the corresponding pain levels, or bedrest and lack of pain, so figured I would ask the resident experts. And obviously, I'm going to call my MO as well, so we can get additional scans, especially since my out of pocket has now been met....Scan away It's FREE!!!!!!!!
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I had DCIS, negative nodes, bilateral mastectomy, no radiation or chemo. I have stable lung nodules that were followed with CT scans for two years. A year and a half ago the chest CT noted the right 7th & 8th ribs as "healed fractures". My PCP ordered a Bone density test which showed osteoporosis. So we attributed these fractures to that. Fast forward 1 year, chest CT shows same fractures but states that they are non-healing. 3 months later I start having rib pain on right side. After several weeks, X-rays show 7th,8th & 9th ribs with subacute(Old) fractures that are healing. So I question my PCP about the possibility that this is not due to osteoporosis. She ordered a bone scan. The rib area lit up and the results state " probable healing rib fractures. Sclerotic metastasis within the differential diagnosis". So I'm awaiting a response from my onco to whom I sent a detailed message of what's been going on. My question is, has anyone with DCIS, negative nodes had mets to the bone?
Thanks for reading.
srmaryfreddo
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aggiemegs-does not sound like the pain I experienced when diagnosed with mets. I experienced sharp pains in my chest, ribs, and back. It did come and go. Chemotherapy can cause all kinds of weird symptoms and aches. Does your MO do tumor markers? The PET scan is the bottom line, of course. You are correct in reporting this to your MO. Best to you, MJH
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MJH - Thanks for the reply! I had a nuclear bone scan yesterday and just awaiting results now. This shoulder is driving me batty!!
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Hi everyone. I developed a cough last October and had and upper GI that diagnosed me with GERD. Cough got worse so went to regular doc in Feb who thought it was lisonopril. Cough kept up despite going off med and got worse to the point my DH and I switch turns sleeping in our bed. Was at my 6 month Breast Surgeon checkup and she ordered a CT that showed "Development of right hilar adenopathy suspicious for nodal metastatic disease". Onco came out and said she thinks "its" back as did the thorassic surgeon that is doing EBus this week. My questions are would mets to those lymph nodes cause cough, fatigue and chest pain and if not mets what else could it be? Lymphoma from Chemo or rads? Sarcoidosis? Anything that won't kill me?
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Goodness. I will say, I don't think doctors say that lightly. I'm glad the are sending you to a pulmonary doctor. that would be a good plan. Are you also having a pet scan? Good luck and I hope things turn out okay.
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Si had a bone scan today and was clear. Therefore no cancer seen in knees as dlb823 and qyinncat suggested. So must be an MCL as my massage therapist suggested. Wear and tear. Thanks for responding. Now onto CT lungs today for follow up lung nodule....another thing to worry about. Are there many stage 4 members with lung Mets only and er positive? How was it found? Symptomatic?
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Hi TPralph,
I can't say how many of us there are but my mets were in the pleural lining. We found it when I developed a persistent cough and shortness of breath on exertion. I did have enlarged nodes in my chest and there may be a lesion but this is unclear. Also a couple of slightly suspicious areas on the bones in my hips.
Jmanningtx, I am sure there are many things that can cause a cough. As I mentioned above, the cough is really what led us to my diagnosis. I caught a bug last October and could not shake the cough. A chest X-ray showed fluid in my right lung and the CT scan showed a lot of fluid. They did a thoracentesis in late December and found BC cells in the fluid.
It doesn't sound like you have the fluid so I can't comment on your symptoms. My cough got progressively worse and, as the fluid built up, I was increasingly short of breath on exertion.
Hope this helps. PM me if you gave any questions.
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Thanks, everyone. Onc said she wanted to skip PET and go straight to biopsy but would do one after results. The waiting is the hardest part as I am sure you will all agree. But Im staying positive and trying not to speculate and google too much but it's nice to have people to reach out to
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My question too is about DCIS turning into Stage IV. I keep reading that it is impossible, yet I see people that it happens to all the time. How is it possible for DCIS to become Stage IV. I worry every time i have a back-ache that I have it. Thanks for your answers.
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It would mean that actually the DCIS wasn't only insitu, but had spread. It isn't impossible, but highly unlikely. Worrying about it only steals the now from you because it will (highly unlikely) or won't happen to you.
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Annie, just to add to cive's answer... I think some women are told they have DCIS and that's what they focus on and remember. But if they were to go back and look at their original pathology, they will see that there was IDC mixed in with the DCIS. Not saying this is always the case, but it often is. Women remember the original DCIS dx, but because of being in shock or disbelief or because of poor communication from their BS or onc, they never fully understand that there were also some IDC cells found. Another possible explanation would be a lousy pathology job -- which is probably extremely rare, but can happen. In other words, the specimen isn't sliced or broken down sufficiently to detect tiny IDC cells somewhere in the lesion.
But as cive said, worrying about it is futile. Just do the things we know lowers risk like maintaining a normal weight and getting sufficient exercise, and try not to dwell on what are probably extremely rare cases.
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My sister is approaching her third year after a metastatic spinal cord collapse of 2 vertebrae in 2014. She had lost the use of her legs for awhile but can now walk with a cane. She had also stopped breathing but is ok now. The oncologist gave her 2 and a half to three years. Her last work up showed that there was on;y a minor increase in her tumour in armpit. Is it possible to be a long term survivor after a spinal cord collapse? She is ER+/PR+/her2- and grade 2. No other mets. I want her around for as long as possible. Thank you.
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Hi Bluepearl, of course! My spine collapsed at L5. That's when the docs found my bone mets. I was in the operating room five days later for a four-level spinal fusion to keep things in check.
It's been 4 1/2 years now. I'm still going strong. It sounds like your sister's hormonal therapy is still working -- you can expect her to be with you for many years to come.
Check in on the bone mets thread. You'll see lots of long-term ladies. Some of them had extensive mets when they were found.
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Cive and Deanna - Thank you for your answers. I appreciate your comments. Take care.
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Hi,
I've started having pain in my lower back. It hurt more if I stood for too long, of if I sat too long (I know, weird right?). Last week my lower back starting killing me during the night. I would have to get up to pee, and I literally couldn't move I was in so much pain. I would have to use the headboard to help myself up. Taking a codeine pill (I have those for after effects of neuropathy from chemo last year) helps, but the pain is there again if I go back to bed and have to get up again. Is this something I should be worried about?
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Citrinetiff, if you haven't done anything strenuous that may have provoked the back pain -- gardening? rearranging furniture? -- AND if it's lasted a few weeks and you now have worsening pain at night, I would report it to your onc and see if he/she feels any followup is necessary. I wouldn't worry at this point, as it could be so many things. But with your history, I think checking in with your onc or PCP is entirely reasonable.
Good luck, and please let us know what you find out. Hopefully, it's not bc-related, but unexplained pain at night requiring codeine isn't normal and needs to be figured out.
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Hi dlb,
Thank you for the quick response! I'm going to call my onc tomorrow and tell him about the pain.
The only thing I could have done to hurt myself is helping my sister last week. She has some mobility problems and I was helping her walk up some stairs. Maybe I pulled something? I won't take a chance and call my onc tomorrow.
Again, thank you, and I'll let you know what the doctor suggests
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Hi Citrineriff,
I agree, talk to your docs but in the meantime, don't stress. I have chronic issues with lower back pain that got much worse a few years ago after I tried to move a piece of furniture that was too heavy for me. In the last few months I have had to start taking extra strength Tylenol before going to bed as by about 2:00 AM the pain was keeping me awake. I'm doing much better with the pain meds but by morning I can hardly straighten up. I walk like an old man! Another dose of pain meds, sometimes with a muscle relaxer, and I'm okay for the day.
Back pain is a huge problem for most of the population and has nothing to do with cancer. It's really a function of living longer and our sedentary lifestyles. If we worked on core strength all the time we would be much better off!
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Hi Sadie,
I know the feeling! Sometimes by the end of the day I feel like an old man! I will try not to panic, and I'll call my doctor today for his opinion.
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I posted last week when my Ct showed enlarged nodes in my lungs and they scheduled me for the biopsy which happened this past Friday (I say all of this because I changed my username since then). Because of the holiday, they don't expect the results until tomorrow. My question is, having gone through this twice before, I know you forget to ask so many things, so I wanted to have a list of questions ready for my doc. I saw the orders my MO put forth am doing they asked for ER, PR and Her status. What else should I ask besides the obvious? Do I need PET? Bone Scan?
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Hi Txgatata, should the biopsy results say positive I would ask for a full work up just to find out if it is anywhere else. Your onc may suggest this without you asking. Other than the questions you have thought of, I cant think of any other.
Good luch with your results and please ket us know.
Love n hugs. Chrissy
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Thanks, Chrissy!
I do hate waiting and the out of control feeling it brings. Think that's why I am trying to make lists and plan. Feels like it takes forever but then it all moves so fast when the news does come.
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Txgatata, waiting is just the worst.........remember how it felt when we were kids waiting for Christmas? It seemed to take forever! When it arrived the day went so quick it was hard to believe it happened at all. Time has not made the waiting easier nor the anticlimax feel when what we are waiting for arrives........sigh, I guess that is where patience comes in. Hoping your news is very anti climactic and life can continue as per normal.
To do lists are always good for making time feel like it's passing a little more quickly.
Love n hugs. Chrissy
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