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Thanks ShetlandPony. Sounds very sensible. I have an appt with my Onc coming up. I'll try again when I see her in person. If I can't get a meaningful answer, I may go back to my 2nd opinion doc to see if she will tell me what she thinks. Sometimes it all feels like such a slog!
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Lumpie, the fact that you have a hx of Stage 2, Grade 3 bc, and your doctors are brushing off your pain so quickly, is very surprising and unlike any surgeons or oncs I've ever known. Any pain that lasts for at least 3 weeks needs to be investigated and bc ruled out -- not brushed off with the types of comments you shared above. And while your onc is correct that TMs are not always reliable, they are one more tool that can provide a clue IF they happen to be elevated, which I certainly hope they're not. But brushing them off as unreliable seems like she's sticking her head in the sand.
Questions: How long have you had each of the "chronic" pains you described? Is your surgeon a breast (only) surgeon/expert? Were you given anything for the suspected costochondritis, and, if so, had it helped?
Comments: A simple MRI would show arthritis (if that's what it is) in your back. A bone scan, as SP suggested, would be great, but it might be easier to justify a bone scan or a PET scan if your TMs were elevated. OTOH, chronic pain should be enough justification, I would think in view of your hx.
I strongly think you need a second opinion -- NOT because I think you have mets, but because I've heard too many stories of women whose pain was dismissed by their docs for many months, and longer, only to end up with an advanced mets dx. You need docs who will get to the bottom of your pain -- if only for your peace of mind!
Good luck, and please let us know what you find out! Deanna
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Lumpie
When I read your post - i thought I was reading my story & something I could have written last year.However my onc was a bit more investigative. We started with an X-ray which showed "fractured rib or "possible Lesion". Of course the word "lesion" was worrisome so she recommended a bone scan or PET. I asked for head to toe PET & it found no evidence of cancer (except my Thyroid Lit up - which after a biopsy showed no evidence of cancer-thank goodness). That was last year in oct. I still have left (and right sided) rib pain and some back & hip pain so i will continue to ask for some type of testing every year.
My bone density test showed arthritis of spine & hips & some osteopenia. I take Aromisin - so I attribute "SOME" of my aches & pains to the arthritis etc - but wouldn't not recommend attributing long term rib pain to a condition that hasn't been fully tested /diagnosed through testing- at least a basic X-ray.
I agree with Deb823. Not sure a 2nd opinion is warranted if you like your treatment team but definitely I would ask / demand a more definitive test such as a X-ray, bone scan or PET. I opted for PET/CT since it would be the most conclusive. I asked my onc if the bone scan showed "something" would she then order the PET - & she said yes - so I said then why not just do the PET/CT scan & be on done with it. She agreed.
I hope & prayer it is nothing - and I too try not to think about recurrence - but you should have peace of mind. Sending good thoughts & hugs - Candy
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Like Lumpie I have had extreme rib pain on my right side (non-cancer side) as well as middle of back. My PCP sent me for a bone scan today. Now I wait. My question is this, when I had my bone scan after initial diagnosis they did a scan down the length of the body. This time they did a scan down the length of the body and then said they needed a couple more pictures. They moved the scanner closer to my body and did a scan of the pelvis and then another of the chest area. Of course my mind goes to "they must see something" since they took the other images. Anyone have a bone scan and have them do this. I know I shouldn't make that leap until I get results, but you all know how it is....
Joy
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can anyone tell me the signs for bone mets? I have some leg joint pain (also on arimidex) but this pain is only in my one leg and feels like joint pain...gets worse at end of day. doesn't stop me from walking or excecising but still alarming. doc says not to worry...but she also won't give me a scan..says its too soon after my diagnosis to have mets...does that sound right? the tumor was grade three and one positive node so I don't kow how she could say its not worth looking into. also, she said "we don't do marker tests they don't show anything and she wont do a scan because she certain the pain is from arimidex.. If I go to an orthopedist they might test for arthritis but I will still think It could be cancer too? should I push for a bone scan? doc said they don't do unnecessary tests. whats the risk of taking a bone scan?
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scaredasshell, the bone/joint pain from arimidex is awful. I feel the pain you are describing is very similar to my arimidex pains and probably nothing to worry about. What concerns me more is your onc's comments that "its too soon for mets" and the simple fact she is not listening to your concerns nor taking them seriously. IMO, you need a new doc, or at least a second opinion. Best of luck.
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Joy,
I get regular scans to check for changes in my bone mets and have twice been called back for another look. Both times nothing further was found. I was told sometimes the scan isn't as clear as they would like.
Here's hoping you have good results - please let us know how things turn out.
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I had blood work last week and although my tumor marker and all liver test were normal, my alkaline phosphates was high (200, normally around 79) This could be an indication of bone mets. Has anyone had similar test and know anything about this
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Lschulten, my Alk Phos was elevated (255) when I was dx'd with extensive bone mets. However, I was also extremely sick, in a lot of pain, and had significantly elevated TMs. There are quite a few things that affect the Alk Phos test -- things like liver disease, including hepatitis, and problems with your gallbladder, so I wouldn't automatically think mets, especially in the absence of any other symptoms. Have you ever had a gallbladder or liver problem? Has your onc suggested a PET scan, which I think would reveal any of the potential causes.
Hoping there's a simple dx and easy fix if that reading is accurate Please keep us posted. Deanna
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I have had no other issues. I feel fine. Scares me! I talk to my onc today. Thank
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I also have had all kinds of tests and scans done because of significant pain, and I did stop the A.I.'s because of it. All quality of life is gone, if I can't even take a walk around my neighborhood. I used to love walking! I would also walk to my main grocery store frequently, with a back pack every few days, saving the planet and all.
One of the main pains, and the first, was not that long after surgery, and during chemo, I think, it was always rib pain on the cancer side. There is a pretty sizable lump, right on my rib that was not there during treatment or before,ever. I HATE what all the different doctors say, especially when they don't agree. They tried to biopsy it once, and I am sure they missed it. The guy who did it said it was like trying to hit a pea in a bowl of jello. That time, the results were benign nodal tissue, if I am remembering rightly. Or benign glandular tissue. That's what made me think they missed it. Your whole breast is a mammary gland, isn't it? My breast surgeon said her best guess is that it is a inflamed node. It's down on my side, between the drain scar and my breast, right on top of my ribcage and it just gives me the fits, and I almost never forget its there, because it HURTS! I have started to wonder if its a neuroma, because that can happen any time nerves are cut. That would explain the pain. Last time I saw the ultrasound girl, she said it was probably just a bumpy rib. Grrr.
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ALP # is still high. I am waiting for a call from the hospital to schedule a bone scan. Stresse
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Hi lschulten, I don't see your history so I'm not sure what treatment you've been through. Is this your first time getting blood work? Are you currently getting chemo? Have you had any scans?
My ALP had risen to 153 in December. All other blood work was good. I had a bone scan and DEXA in January. Bone scan was good but DEXA showed considerable bone loss from Arimidex. I started taking Fosamax in February and my ALP as of yesterday was 129. Not sure if this helps or not.
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Thanks for the reply Carpe Diem. The bone scan showed several "spots". I am being sent for an MRI. I am also going to pick up the scan results from doctor tomorrow so that I can see the detail. I will keep you posted!
Joy
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I was diagnosed with stage one invasive ductal in Jan of 2013. Local recurrence in may 2014. I have had double mastectomy chemo and radiation. Also a complete hysterectomy. I take letrozole and do have osteopenia. I am 46. I have a shot every six months for my weak bones. ER/PR+ HER 2
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Lschulten, My MO decided to do the blood test to determine if the high ALP was coming from my bone or liver. That helps when you're looking to do testing. An increase in ALP can be a side effect of an AI. Like Dlb823 said, there are other things that can affect your ALP. Have you scheduled your bone scan? Let us know how everything goes.
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Hello Everyone, has anyone have recurrence while having TE? I'M currently have TE and it was filled three time to inflate, the fourth time, I have it deflate, August 8. Then it feels like tingling sensation toward"my left rib cage where the base of TE is. I also has soreness, swelling I presumed at same area underarm. Could this be bone recurrence.
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Hello Everyone, has anyone have recurrence while having TE? I'M currently have TE and it was filled three time to inflate, the fourth time, I have it deflate, August 8. Then it feels like tingling sensation toward"my left rib cage where the base of TE is. I also has soreness, swelling I presumed at same area underarm. Could this be bone recurrence.
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Houston, I didn't have tissue expanders, but the first thing that comes to mind is that the tingling you're describing sounds more like maybe some truncal lymphedema (swelling in the breast/side area due to removal of lymph nodes or radiation) than bone mets. If it continues for 2 to 3 weeks though, it's always best to report it to your onc, to see if he/she feels some follow up is necessary. Deanna
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Thank you db823 for your response. It certainly give me a sense of relief. Just don't know why it started after my TE was deflate, at the same time, my chest was having some pressure.
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I have already had a reoccurrence in April of 2016 in the right supraclavicular lymph nodes. At the time I was still going every 3 weeks for my herceptin treatments. So I started over again with a new staging of 3c. In March of this year I noticed twinges of pain under my right rib cage. It comes and goes ...I went to my GP and they did an ultrasound done they were concerned that it was my gallbladder however no evidence of gallstones or any other abnormalities on the ultrasound. In May I noticed that pain was becoming more frequent. Most of the time it feels like a muscle spasm under my rib cage usually very sharp and intense. I've also been having pain and my back under my right shoulder blade. I have A PET scheduled for 24 August. Just wondered if anyone had similar symptoms prior to liver Mets diagnosis? I am optimistic and really hoping that it's just a gallbladder issue even though the ultrasound didn't look abnormal.
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I felt the knot above my right clavicle. It was hard but was not painful. I called my MO went for a pet scan and it lit up like crazy. After that they did a biopsy to check the pathology The only difference in the path was the her2 status changed from my original diagnosis of positive to being her2 negative.
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Oh man. I just felt around my right clavicle and a couple inches down from it is a hard oval/round ish bump that doesn't move. It's maybe 1/2". Just a rough guess. It's not on the clavicle. I had bmx and have implants (cancer was left side). This is above the implant. Should I worry?
I'm scheduled for a long awaited revision to my right implant area for symmetry on Sept 1, Labor Day weekend. This is on the right side. I assume I should be seen, but any harm in waiting until I'm done with my sx? I know it sounds off to some but my implants are uneven and it shows. If this is something then I'd like to be done with the ps part as I"m so close to it finally. Thanks
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Artista, I would report it to your onc and PS now. That way, if they thinkit should be removed and biopsied, it can be done at the same time as your revision surgery. Deanna
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PS can remove it, doesn't have to be BS? I'm afraid BS will say no to sx if it is something.
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Artista, Joycek,
I would definitely mention it to your MO. But to be honest it's probably more likely to be caused by lymphedema. At least that is what my MO told m
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Can you get lymphedema on your non-cancer side? No nodes were taken out on that side.
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OMG do I feel stupid. I forget sometimes I still have a port, and what I was feeling was my port! I looked in the mirror after being afraid to and yep, that's where it is.
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Artista... yes, I had mild lymphedema in my non cancerous arm. It was painful, but after several sessions with the PT, it has diminished significantly.
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Artista,
I'm not 100% sure but if it's not lymphedema it's very possible that it could be from an infection of some sort. Mine increased in size pretty rapidly so just keep an eye on it. When I was originally diagnosed with BC I had an internal mammary node show up on my first pet S
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