Joining the club - is my back pain/sciatica bone mets?
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AliceBastable - I like the Schrodinger's analogy!!
This time around, I've shared my fears only with my DH, although I don't think he really gets how much the fear can consume me, if I let it. With the first two diagnoses. I shared everything openly with family, colleagues and friends, but I haven't mentioned much about this round of scans or my current discomfort. I've mentioned that I'm trying to manage some side effects of radiation with physio, massage and chiro. I have to admit I'm currently not as concerned as I was when I found each of my lumps. Lately, I've been fairly good at convincing myself that everything is related to my recent treatments with chemo and rads, plus my mega decrease in activity and increase in screen-time.....Not to say I'm not reading and researching symptoms, diagnoses and outcomes. Just less obsessively than previously!
Beeline - best of luck on Friday. I'll be thinking of you lots and sending calming vibes. I hope you get answers soon and fingers crossed its arthritis or disk problems and totally unrelated to "C". How are you managing? Is the pain relenting at all? My DH and I seriously looked into moving to NZ about 4 years ago and were hoping that when I became 5 years cancer free, we would move there...after my recurrence, I've moved that idea to the burner behind the back burner :-)
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beeline-good luck with your bone scan...thank you all for your thoughtful words and encouragement. I too have been having right sided si pain (radiates down leg to knee) as well as right sided shoulder blade pain (radiates to arm and elbow) for about a month. I have been going to PT weekly and she Rec asking for a muscle relaxer because the muscles are very tense. I can’t help but think the worse and pray for the best results. My MO sending me for MRI and xrays which is Both a relief and now a cause for concern. I’m so grateful to have this safe place to vent and be heard by all of you who truly understand that I can’t help my thoughts and feelings! Did share with my DH and he held me as I cried my fears away, praying for you all always
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I have an ultrasound coming up for a mystery neck lump. All I've told my husband is that it might be another lipoma (although it doesn't feel like the one I had) or a neck hernia. I kind of made that one up, but I don't think he'll check. Back in 2018, he'd go with me to appointments and hear what the doctors said. Now with Covid restrictions, I can censor the information he gets, up to a point. I'm not great at sharing stuff like nasty medical news, so if this is something that will need further treatment or surgery, I'll have to force that conversation. He gets more emotional than I do. I elbowed him in the stomach right in front of my oncologist when she told me I had kidney cancer at my follow-up after the lumpectomy, because he started making moaning noises and 1) I couldn't hear the doctor and 2) it was embarrassing!
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LaughingGull, this is one the best laughs I've had in ages: "Nothing at all! No worries or suspicions whatsoever! This is just for peace of mind, out of an over-abundance of caution. Thanks for asking, though, and good luck with the real cancer patients". Thanks for that! I have tears in my ears from laughing so hard. Only another "cancer person" would get it so well!
Maryjv, I'm sorry you're going through this, too! Wishing you the best results and not too much anxiety on the way. Do you have a date for your MRI and x-rays yet?
Mudstick - oh wow, did you really consider NZ? I came for a 6 month job contract 15 years ago and then met my husband so the rest is history, as they say! it is probably for the best that you rethought it. As much as I love NZ (and I really, really do), they are just not big enough to be cutting edge on MBC. Totally gold standard for early cancers, but not there for anything more complicated. I have been trying to decide if it's crazy to move because I *might* get MBC, but certainly if I do, I think we'll need to move back to the US (though hopefully not during the pandemic which NZ has controlled incredibly well).
AliceBastable, the image of you elbowing your husband in front of your oncologist!! I hope your neck lump is nothing sinister. I, too, will have to figure out how to tell my husband if my bone scans come back no good...
Thanks everyone for the ongoing support! Sending big hugs to you all!
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Beeline-thank you for your caring thoughts. I have MRI and xrays scheduled for 12/4 and f/u with MO 12/11...I actually ended up at urgent care yesterday because the pain is so bad and Ibuprofen does not touch it...unfortunately they could not perform any scans but did prescribe tramadol. the MD feels like this can be nerve/muscle skeletal issues because i feel a lot of burning in the areas that hurt. Idk, we shall wait and see, but I do feel better with the tramadol so that is a good thing...
AliceBastable-yes, the image of you elbowing your husband! Praying for all of you!!
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Good morning,
It really is wonderful to have a place where everyone understands what its is like and really gets the jokes!! I have a tendency for black humor, but I know its not always appreciated - so I try to be careful.
Beeline - Good Luck today!!! That is interesting about NZ and their cancer care...I'm in Canada, so I wonder what similarities there are between our health systems. I registered to receive job postings and researched all the steps for immigration to NZ. I'm a professional, so I believe we could have gotten enough "points" to be considered. We have some friend who live in Wellington, so were seriously considering a move before cancer reared its ugly head again.
Maryjv - sorry to hear about your increase in pain and no answers. So frustrating and it must be concerning for you. December seems so far away! I hope the Tramadol continues to help. Are you taking any muscle relaxers or other anti-inflammatories? I see you had a DIEP sx recently too. Are you healing well from that and happy with everything? I had mine in 2018, and I'm fairly happy...still have funky/pointy scars from the abdominal incision, but overall happy with the foob :-) Radiation this past fall has caused some scarring and thickening along the top, but physio is working that out right now.
AliceBasable - Good luck with your u/s for your neck. I hope it turns out to be b9. It looks like you've been through enough!!! I love your story about your husband too.
I chatted with my GP this morning about my x-ray results. They aren't very concerned, which is good. She was going to initially order an MRI if I was still painful and the x-ray wasn't conclusive, but since my MO ordered a bone scan she is going to wait and see. It makes sense, but I hate to think about the possibility that the bone scan is inconclusive and then wait and order more imaging and wait more. I "think" physio on my low back is helping?? Mid-back is still uncomfortable when I twist though. My neck is a chronic issue (sports and whiplash). Nothing earth shattering pain-wise though, so I try to keep the fear monster under control. I hate the thought that I have this much spinal arthritis to deal with at 45 and now in medical menopause, but at the same time - its definitely better than mets.
Hope everyone has a relaxing weekend!
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I am combing the threads about upcoming bone scan and managing the anxiety. Have bone scan scheduled the day before Thanksgiving due to an X-ray that showed a sclerotic lesion on my right hip. Have had pain on and off in my right hip for years (way before my BC) but now it is more consistent. Since starting tamoxifen, I have hurt all over. I too swing from “just knowing” it is back to being sure it is normal aging/tamoxifen/menopause pain. I also know this doesn’t get easier and this will not be the last time I play the waiting game. So glad there is a place where I can see I am not alone in my fears.
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welcome Denise-good luck on wed, agree thoughts go both ways quite often. F*** cancer!!!
mud stick-I am on muscle relaxers and ibuprofen and tramadol...only taking when needed, my DH gives me daily massages and rubs the areas that hurt...I am recovering from surgery well, happy with the outcome and i am set to have phase two surgery 12/30...hope that is the path for me! I do feel very weak on my right side, my cancer side, feel like I coddle that side very nuc
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beeline, glad you had a laugh
Alicebastable, I also smiled at the image of you elbowing your husband...cancer puts us in bizarre situations doesn’t it?
Denise, you got a bad date for your appointment, you may have to wait till Monday to hear something back right? Make a plan to be distracted with activities or movies, and delay thinking and worrying about your results. That you had the pain before cancer counts in favor of not being cancer right?
You are right this will not be the only time we are in the waiting game. If we get a metastasis, wouldn’t we want to catch it when the burden is still low rather than when it has moved to several places? We need to trust that if we get a result positive for recurrence, we can handle it. We are strong. We are supported. The switching back and forth from catastrophic thoughts to normality is similar to waking up after a nightmare and realizing it was all a dream. It wasn’t real. Our worst terrors don’t reflect reality. In reality, a recurrence will be bad news but we will keep breathing and walking and probably won’t die this month. And a non-recurrence doesn’t mean eternal health and well-being. Those who aren’t in our cancer feet aren’t immune from disease and suffering either. They will get sick and die, too!
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denise35 - so sorry you are joining us here! I hope you are able to enjoy Thanksgiving without too much scanxiety. I recommend a glass or 2 of wine (I know this is controversial) and/or some anti-anxiety meds for sleeping if you can get them prescribed.
I had my scans on Friday and am now playing the waiting game... MO said I won't have results until next week, feels like a million years until then! The weird thing is I didn't remember the scan processes at all from last time. I guess I was so in the throes of those early days of learning my surgical pathology had come back so much worse than predicted (went from a stage 1A to 3C) so all I remember of the scans was being completely terrified all the time.
Mudstick, whereabouts in Canada are you? I have been thinking about moving there for years. My youngest brother did his phd in Vancouver and now lives in Toronto with his partner. Like most big countries with a public health system, Canada does quite well on the whole with cancer care, and a few hospitals there are among the best in the world. Not sure if they would take me now, though!
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Beeline-do you have a f/u scheduled or will they be calling you with results? So sorry you now have to wait for results...and those imaging techs are so good at poker face! I remember trying to gauge their faces for reactions but all I would get was a sympathetic smile!
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Did the bone scan today and the office called with the results in the early evening. Only spot that lit up on the scan was the one on my hip. That is very good news so far. Now they have me scheduled for an mri on Monday evening to check the lesion and determine if they need to biopsy or if it is just a “bone island.”
I am sending lots of good thoughts and prayers up for everyone on this thread waiting to have scans and waiting for results. The unknown has always been harder for me.
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denise35, so glad you got your results so fast! You must have a really good team. Here’s hoping for a bone island! Sending lots and lots of good thoughts! Hope you are able to enjoy Thanksgiving! Hugs to all x
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Maryjv, I have a f/u phone call schedule (hard not to read f/u in a different way 😂), but I’m hoping they might call earlier if the results come in. Happy to hear you are getting some relief with the tramadol. I was nearly in tears constantly with the pain until my MO prescribed some codeine. I’m doing physical therapy, too and I know exactly what you mean about “babying” the cancer side. I feel like I’ve done that ever since my mastectomy! I hope you have a safe and pain-free Thanksgiving!
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great news Denise!! What is the difference between an X-ray and bone scan? It’s a bony island, it has to be!!!
Happy thanksgiving ladies, keeping you in my thoughts and prayers! ❤️
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Happy Thanksgiving everyone! Praying you all had a blessed day.
Maryjv my understanding is that the bone scan is more sensitive than an X-ray and gives them a better picture. For the bone scan, I had to go in and get an injection and wait 3 hours then come and lay still for 45 minutes while the scanning machine went over my body.
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Denise and Beeline - Wishing you all the best this coming week as your results come in. Waiting is so, so hard! Also, good luck at your scanning appointment on Friday Maryjv! I hope everyone was able to have a relaxing weekend and you enjoyed Thanksgiving. Also hoping everyone's pain is manageable and you were given many massages and special treatment by your SO's :-)
I don't think my MO was terribly concerned about my back pain - although he's ordered a bone scan, it was requested as "routine". That means I could be waiting quite a while for an appointment....Physio and massage have helped my low back pain (not gone, but better), but it hasn't done anything for my mid-back spot. Concerning, but still a lot of hope that it is muscular and not bone.....
Although I've been reading and following everyone here and thinking of you often, I never have as much time as I want in order to respond fulsomely. I am so sorry! I will definitely update when I have more info and will be checking as often as possible and cheering you on!!! F**k Cancer 100%
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Wanted to post an update. Got my MRI results today. Long story short....the spot on my hip has all the characteristics of a benign lesion and is nonaggressive. They will scan me again in three months to make sure there is no change in the shape. She did not want to biopsy because it would be hard to get a good sample which leads to wrong test results. So the best way to make sure is to scan it again in three months. She said she and the radiologist feel this is the best way to proceed. The spot had well circumscribed edges and was not deep in the bone at all.
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Oh Denise, such great news!!!
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Yay Denise!
So happy to hear that the lesion is looking benign. Hoping it stays looking that way at the re-scan too!! Deep breath and hoping you can keep busy and keep this off your mind for the next three months :-)
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today I had a endoscopy and colonoscopy performed-one small polyp found and removed, but the doctor left a meta clip so now I don’t even think I can have the mri done on Friday...ha! This is so my luck I will say, now will call and ask and figure out the plan!
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Maryjv - Where you able to have your MRI today? I would hope that they would place a non-magnetic clip.....Good luck.
Beeline - How are you doing? Have you had your appointment for results? Wishing you well and thinking of you.
I got a call from the hospital this morning that they had a cancellation and I can get my bone scan done on Monday afternoon! I'm so happy that its happening sooner, rather than later. But along with that, of course I'm incredibly nervous - let the scan-xiety begin. Going to be a busy weekend around here, so hopefully that will keep my mind off the worry and wondering "what-if?"
I hope everyone enjoys their weekend!
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Hi mudstick,
Try to calm your mind down -good or bad result, you will deal with it, and if you have a met you will want to know sooner rather than later. You will want to blast it before it spreads further. You deserve to enjoy your weekend to the fullest.
Beeline, what about your results? Havent you heard anything yet?
Great news Denise, so happy for you.
Maryjv, we are in this with you. How's the pain going?
LaughingGull
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hello ladies! Pain is improving but rotates site each day...I am taking tramadol at this time, so yesterday I got a cal that my Insurnace denied the mri and so my doctor is ordering bone scans-scheduled for next Friday-almost there! Good luck everyone hoping uare feeling better!
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Maryvj - wishing you luck with tomorrows scan!!!
My weekend was busy enough to keep my mind off doing my scan that was done on Monday - although I've been a ball of nerves ever since, even though I know I can't change the outcome. I received the bone scan report last night through my patient portal. Here is a summary of highlights from this scan, which was compared to my re-staging scan done in March 2020 after my local recurrence:
Foci of increased uptake in the mid cervical and lower lumbar spine a described above are compatible with degenerative bony changes. There is a new minimal increased uptake on the right side of approximate T8 vertebral body, probably degenerative in nature. (This is the approximate level I have a new-ish focal pain on rotation/extension, but the pain is on the left! side!!)
There is a new small focus of mild increased uptake on the left side of the skull posteriorly at the occipital bone or adjacent to temporal bone on current examination. A new small focus of faint increased uptake in the distal sacrum on current study noted.
New small faint increased uptake in the distal sacrum might be a subtle injury and a new focal mild increased uptake on the left side of the skull posteriorly is nonspecific, however, early sites of bone metastases could not be excluded. Reassessment with short-term follow-up bone scan in 3 months is suggested if clinically appropriate.
I haven't had any known injuries since my last scan and can't think of a reason why there would now be uptake on my skull?
My MO ordered the scan, but I my next booked appointment with him isn't until Jan. 20th. I have an appointment with my RO next Wednesday (December 16th). Not sure if my MO will call before or not in order to discuss...
I'm of course reasonably worried, but trying not to let the anxiety-monster take control since I haven't had any doctors opinion/discussion yet, and can't do anything about it anyway. Looking for words of encouragement or similar stories where new mild uptakes turned out to be benign or early mets!
Thanks everyone :-)
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I'm here with you Mudstick. Thank you for sharing your fears and thoughts. I also feel the same-I can't change the outcome. I had a bone scan before chemo but I never read the report-my MO just said it was good. I am still in pain daily, rotates between my knee, shoulder blade, sciatic and mid back. Sometimes dull, deep pain, other times feels like the joints/bone and sometimes the muscle (burning pain). I am taking Tramadol, Ibuprofen and gummies. I hate the waiting, it the worst! Hoping you hear from your MO soon! I have my f/u on Monday but may be too soon for the bone scan results...thank you for the words of encouragement! Maybe the RO can review the report?
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Hi, all. I'm glad I found this thread. I've had a persistent ache in my right thigh for about two weeks now. I keep swinging back and forth from It's Nothing to My Cancer Is Back. Sometimes my chest is so tight with anxiety that I can't breathe, and I can't stop the negative thoughts. I've read everything I can find on bone mets and leg pain and looked at muscle and nerve diagrams to figure out if maybe I have a compressed nerve or a muscle strain -- anything that could explain away the ache. At what point did you finally say "Enough!" and contact your MO? The odds are in my favor, but still sometimes this fear is all-consuming. I don't think anyone else truly understands.
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TooQuiet - the traditional wisdom is if the pain stays the same intensity for two weeks, or increases - call your doc. I would probably start with my PCP, but if you have a good relationship with your MO, call them.
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If it is something, waiting isn't going to make it better, and if it is nothing you are causing yourself major anxiety for nothing. I totally get it. I say call your doc or your MO and try not to worry too much if they say, yea let's scan that because that just means that since you have a history of cancer they are going to err on the side of taking a look vrs not doing anything--and that doesn't mean anything else.
sending you hugs-
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Hi all, thanks LaughingGull and everyone for thinking of me and the well-wishes! I finally got my results after a bit of a runaround. Long story short, I am on a clinical trial so my care is scattered across locations and the results got misdirected. The good news is NO evidence of metastatic disease! My scan looks pretty much the same as it did 2 years ago, including lung nodules and areas of uptake in my cervical spine and a foci in my lumbar spine which were determined to be degenerative. I didn't really believe it until it looked the same now. Such a relief. Now I just have to figure out what is going on and how to make it better, but at least I know it's not cancer.
Denise35 - fantastic news!
Mudstick - I know how hard it is not to worry, but if your MO agrees with the watch and wait/rescan in 3 months approach I think that's a really good sign that they're not worried. It sounds even from the report like there are other possible causes for what they're seeing. Will be thinking of you. Let us know what the next steps are!
Maryjv - fingers crossed for your follow up tomorrow. I hope the results are in and you get the all clear.
TooQuiet - I have also heard the traditional wisdom that MinusTwo mentions, though I've heard 3 weeks. Either way, it is worth putting in a call. I know for me it was hard to pick up the phone and set that ball rolling because I was afraid of overreacting.
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