If you are not Stage IV but have questions, you may post here
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well, the bone scan was 7 months ago. those are inexpensive, may be worth repeating to try and find the source of the pain.
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Bevin the cat scan of abdomen and pelvis was just 3 months ago.Pet scan cant be done again within the span of 3 months only.I would ask for a bone scan.
On her cat scan 3 months ago there was also a lung nodule.She also cough 2-3 times a day slike tickly cough.
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Katie, as others have suggested, bone scan is best idea for a mets hunt, as the last one was in May, that is a long time ago.
However, patients with breast cancer can also get other more benign things, like age related osteoarthritis of the spine, which might show on a plain Xray, or a non-cancerous fragility fracture even without trauma which would also show on a plain film. A good history and physical exam by a doc is also in order (e.g., to see if there is local pain at a bony site, is there neurologic involvement on exam going down the leg like pts can get with sciatica or lumbar disc disease, is she on meds that can cause back pain like AI etc). Sometimes it is also just lumbar muscle sprain, e.g., did she lift anything heavy like a child
Some docs can also run a bone alkaline phosphatase blood level to see if elevated, it reflects an increase in bone turnover ( from healing fractures, mets, or other metabolic causes, even vitamin D deficiency) if bone scan is not easily available quickly.
she should see the doc who has her whole record, and tell the whole story.
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Hi Katie, yes that is what I was saying, bone scan since the last one was in May might make sense again. good luck, I hope you find the source and I know others will be along soon to give input.
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Hello,
I was diagnosed in June 2016 with IDC, Stage 1, Grade 2 with no spread to the lymph nodes or to the blood vessels. I had surgery in September 2016 and it's been a year and I have had good blood work since then every 6 months my doctor tests me. But a month ago I came down with a cold and had a cough and it's been 3 weeks since the cough started, but there are still remnants of it. It's the kind of cough you get when you go outside in cold air and breathe in, it's a catching cough I would describe it as. I also find myself short of breath when doing simple things like walking up the stairs. I was wondering if anyone here has had BC spread to the lungs and what your earliest symptoms were like? I made an appointment with my MO just for him to check it out for me, but in the meantime thought I would reach out to the BC community to see what early onset symptoms are in some people.
Thanks in advance,
Misty
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Hi Misty, if you are short of breath just going up a flight of stairs you need to see a doctor. This doesn't have to be cancer at all, but it's definitely something. Possibly pneumonitis. Glad you've made an appointment. Please emphasize the SOB. If this has been going on a month you haave a problem.
Once again, since it came on with a cold it could just be a pneumonia of some sort.
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Misty, sounds like a nasty bronchitis to me, but good to be checked! Best MJH
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Hi Ladies...
I've had hard burning pain in my right hip for over a year, and on my iliac crest about 3 months coming and going. I've broken my right arm 4 times and had 5 surgeries on it in 2 years. My surgeon said there's no reason my bones should be that soft even after chemo. They've done MRI's on my spine, my hips and arms. They say they're clear all for degenerative changes. I've had disc removed from my neck. PET scan last year my hip, base of my tongue and pelvis lit up like a Christmas tree. They said it was indicative of a torn psoas muscle. Now my left (side bc was on) upper arm is starting to have bone pain. I go for a bone scan the day after Christmas, on my grandsons birthday. Anyone have bone mets to the hips/pelvis? If so, what did it feel and act like? Was it constant pain, burning, sharp, etc.?
*the more I walk the worse it hurts and PT only aggravated it
Thank you for your responses!
...WORRIED IN TN
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i had a 6mm lung nodule thst was followed for 2 years and said stable on last scan in oct but a 4mm was found new. I don't see mo until feb. Really don't want ct scan for every nodule that pops up. The area i live in is pretty polluted so i attribute it to that. Plus it's on the non cancer side in lung. Would bother bringing it up? I read my result in my online chart.
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Hi..Rosabella My mom also have a 4mm lung nodule on her non cancer side.She was stage 3 tnbc in 2015.It was found on her first cat scan post treatment in sept 2017.She has developed a terrible cough from last three days.She also had pain in her chest after that terrible cough.I am too worried for her.
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TNMTNGAL, I would be concerned about all the issues you've described. And yes, mets pain can feel like aching and burning, and if in the hips and back, usually worsens with activity and standing. MRIs are not always the best way to pick up mets, nor have I ever heard of torn muscles lighting up a PET scan, although perhaps something has been lost in the communication there. A bone scan is exactly what I would suggest. Also, depending on what they tell you after you have that, I would strongly consider taking your medical records and going for a complete evaluation at your closest NCI-designated cancer center. The fact that you've had as many fractures as you have had -- whether or not mets is involved, which we hope and pray is not the situation -- is also concerning and needs better answers than it seems like you've gotten so far and perhaps a bone building med, such as Xgeva (Prolia). Good luck on the bone scan, and please come back and let us know the results.
Rosabella, your onc will hopefully bring up any concerning changes in that lung nodule, but if he/she doesn't, you absolutely should. There are many reasons why a nodule may appear larger than it did the last time, including being scanned on different equipment, and/or just the angle and the way a radiologist sees it. In other words, imaging is not always as black & white as we may think it is, and tiny lung nodules are fairly common. Also, while there's no reason to suspect mets at this point, the fact that it's on your non-cancer side doesn't make a difference. Is your onc following your TMs? They're not always accurate for everyone, but it might be one more little assurance if they're in normal range.
Katie, I would strongly encourage your Mom to report her cough to her onc. It may be something as simple as bronchitis or a touch of pneumonia, but those both require tx and should not be ignored!
So sorry each of you is dealing with a worry during the holidays. Hopefully, all is well, but please follow up and keep us posted! Hugs, Deanna
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TNMTNGAL...I'm afraid I have to agree with dlb. I have a lot of bone mets in my back, pelvis, hips, ribs etc etc and I would describe the pain the same way you have. I'm terribly sorry to tell you that but, as dlb823 had the same experience, I feel I should. I also agree with her that you need to have a bone scan. That's the most accurate way of revealing any mets. I really, really hope this is a false alarm and I agree with dlb823's advice as well.
Katie and Rosabella.....I would bring up any concerns at all that I have with my oncologist. You have the right to ask and he/she won't know if you don't mention it.
I too am very sorry you all have this to deal with and I send you all my love and thoughts.
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Thank you so much for the reply! I actually had a bone scan today. They only scanned my lumbar spine and hips. I also had the lumbar MRI with an without contrast today. Hopefully I'll have some answers soon!
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Hello everyone, this is my first time posting here, have been reading the board since my initial Dx in 2015 and learned a lot from the experience and knowledge shared on the board.
I started to experience left hip pain on and off more than a year ago. Had whole body bone scan Apr2016, pelvis MRI Jul2016. No lesions. About a month ago, the pain got worse, had another bone scan, report said abnormal uptake in left femur. Follow up MRI found lesion in the same area. Getting a PET tomorrow.
Oncologist still thinks it is very small chance that it is bone met, because of my type of BC (DCIS with microinvasion), but I know I can be that tiny percent. Oncologist said it may be very difficult to biopsy the area where the lesion is located, if PET does not show anything else, we may just do radiation. I remember seeing some discussions here about why some bone lesions get biopsy some don't. I would think it will be better to know the tumor biology in order to have a good treatment plan. I know if PET shows other lesions, it will be different story
Appreciate if anyone can share information about bone biopsy or similar experience.
Thank you.
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hello everybody, I am posting here because my finance's mother probably only has a day left with us. She was doing okay (gradual but accelerating decline, stage IV with metastases to her liver, bones, and brain, and she has started having severe, acute ascites) until yesterday, and has since entered a tailspin with an infection, completely altered and is now in the icu on a ventilator. I'm a paramedic, so I am familiar with the medicine, but what is about to happen scares the hell out of me and I need to do everything I can to help the family prepare. They haven't had any discussions or advance directives put together whatsoever, so this will be a frantic scramble for me while they are grieving to prepare for the next step.
After she passes, her husband will not be able to care for the one remaining child in the house, a 16 year old with mild autism. Dad has mental health problems and we're going to have to keep an eye on him for suicidal ideation, same for the teen. We're confident we can take over (he won't argue that we should take him) but we're not sure of all the nitty gritty required. We'll take over getting him to school and the doctor, fed, clothed and taken care of. But we are extremely poor (living in Seattle on basically minimum wage jobs,) and will need all the assistance we can get.
What resources are out there to help us, apart from the basics like food stamps and housing? Would talking to a custody lawyer be of any benefit for advice? Has anybody else dealt with this before? Her family is intensely disorganized, and I want to shoulder as much of this burden as possible for them, because despite being together for going on a decade, mom and younger sister never liked me, so my role in this will be one of pragmatism.
Thanks everyone for any advice.
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Hi All,
hope you are all well.
I am just closing the loop for my situation. Bone scan was clear and so was the CT scan other than the area in the sternum. The CT scan mentioned that there is a 1.5cm x 2 cm area of soft tissue at the anterior superior mediastinum abutting the inner wall of the sternum. It also says that this area could be a lymph node. So I guess there is no clear answer on if it is just a node or a node and wall of the sternum.
I haven't received confirmation of my stage from the doctors but when I asked the clinical trial nurse about it she said it is stage iv but will re-confirm again when I see the doctors which won't be until January 10.
Meanwhile I will take the good news from the scans.
Hugs
Lola
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Honeybadgers- would anyone qualify for SS disability? There are attorneys that help with this, and they take their fees from the settlement. if you SO's Mom is on SS, I think there might be a one time payout of $2000.00 for funeral expenses. Not sure, tho. Maybe check NAMI website for resources also. Best of luck with this sad and difficult situation. MJH
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Lolis- all sounds so positive to me! May the force be with you always. Love , MJH
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Thanks MJH. I am glad that the recurrence is localized and hoping that it remains like that. I start the trial of Ribociclib on Jan 9 (by then will have the biopsy results and know if it is the same as the first dx) and wondering if the RO will suggest targeted radiation.
Hugs
Lola
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Honeybadger, I'm so sorry about your fiance's mother and other family concerns. I have no advice but wanted to suggest that you might want to repost your question in a couple of other forums here, where I believe you'll get more feedback. If you click on All Topics (to upper left), then scroll down, you will see discussion areas that I think might be more re;ated to the information you're after. Take a look at the sections headed "Family Matters" and "For Caregivers, Family, Friends & Supporters," and maybe even "Employment, Insurance & Other Financial Issues." You may find similar questions to yours already being discussed, and/or you may want to repost your question in one or more of those areas. The discussion boards here can be a bit confusing to navigate at first, but I have a feeling your questions will get more views and responses in those areas than they will on this page. Hugs, and prayers for your fiance's family.
Lolis, thanks for the update. I'm glad to hear your bone scan was clear, but the other soft tissue, possibly a lymph node still sounds a bit vague to be sure it's Stage IV. But even if it is, the fact that it's limited to one location is a very good thing. If it's considered ogliometastasis, it would have an excellent prognosis. It's something you might want to ask about. Here's a link with some info': https://www.ncbi.nlm.nih.gov/pmc/articles/PMC42026... Hugs, Deanna
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I just got home from yet another bone scan (2 within 2 weeks). My onco ordered an MRI of my left breast/chest area tomorrow. I do have a very "tender to touch" spot on the outside of my breast. Are places that are tender to touch something to be worried about? My bone scan shows my lower back at moderate risk for fracture. So I'm probably looking at a bone building med. I'm still not sure, with the pain in my right hip and a hot spot on the PET in my right hip, why they're not ordering another PET. It's so frustrating
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Gal, you might try to speak directly with a bc radiologist about your imaging and what the best modality would be for you right now.
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@ShetlandPony Thank you so much for your reply! I go today for the MRI of my left breast/chest wall. I'm going to try to contact the Onc Rad this morning to see if I can get a meeting with him. I pray you are well today. Thank you so much!
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TNMTNGAL, I'm not clear on why you had two bone scans within two weeks. Did they not scan your entire body (the way it's normally done) the first time? And I'm also not clear on why you think you need another PET scan. Not sure where you are getting your work up, but if it's not at a major cancer center, my best advice would be to take your records, including pathologies, scan results, etc., to the closest one on the list below for a second opinion. Perhaps the screen name you've chosen is overly influencing my thought process about some of what's going on with your situation (like I'm picturing maybe a community or regional hospital setting, which may not be the case at all) -- but when things aren't crystal clear or adding up, it's really important to seek an opinion from radiologists and oncologists who truly specialize in breast cancer, which you will find at the larger facilities listed here. https://www.cancer.gov/research/nci-role/cancer-ce...
Please continue to keep us posted! Deanna
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I agree with Deanna! Especially when things get complicated or questions arise, go to a major cancer center for their expertise.
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Thank you for your reply! I do go to the "Regional Cancer Center" of Northeast Tennessee. They're are patients who travel from Virginia and North Carolina to have onco visits and treatments here. I have trust in my oncologist, I just think I'm getting lost between my regular dr and the cancer center somehow. I'm checking on it though. I will keep you updated as I find out answers. Again, thank you
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TNMTNGAL... I'm curious, have you seen the actual written reports from your scans, or are you sharing here what you recall being told? Also, when was the PET scan you mentioned? (I'm not understanding why you think you need another one if that one was fairly recent.) When they said your lower back is "at moderate risk for fracture," to what are they attributing that -- just degenerative disease? And how long have you had the tender breast spot? As a general rule of thumb, most new pains -- unless they're truly severe or otherwise affecting your quality of life -- can be given 3 weeks to see if they go away on their own, as the majority of odd aches and pains will. I am, quite frankly, more concerned about the hip pain you described initially, which I'm not sure has been diagnosed as yet -- or has it???
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I have the actual reports. I always get them printed for my personal file. My last PET was in 2016 that showed the hip hot spot but they said it was indicative of a torn psoas muscle. They sent me to my ortho who said it wasn't a torn psoas and sent me to my neuro surgeon who said it was from my lumbar degeneration. Still no for sure dx of my hip. The breast bone pain (soreness) has been going on a while. They did the MRI today which was excruciating on my back because I had to lay on my stomach for over an hour and a half for that. As for the bone scan, they only do my hips and lumbar. I wish they'd do an entire body nuclear medicine scan. I still don't have a dx for my hip, but praying I get one soon
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TNMTNGAL, hopefully your oncologist is the only doctor ordering scans for you. Reading through the thread, it feels like the basic diagnostics aren’t being covered or followed up on by your team. A bone scan is done in nuclear medicine. Patient receives an injection of a radioactive tracer, waits three hours, and then Ian scanned from head to ankle. If you haven’t had this test yet as described, it’s absolutely what is needed in order to dx bone mets. For diagnostic purposes and to establish a baseline, you might also speak with your MO about CT scans of your lungs, abdomen and pelvis. For this test you have to drink that yucky barium liquid over the course of an hour and then can get all three areas scanned.
It’s ok to ask your doctor for a full summary of where he or she is in the diagnostic process and what next steps might be up for discussion. I find I have to stay on top of all of this to keep everything moving along.0 -
Gal, when you said you had a bone scan on your hips and lumbar, I wonder if perhaps you meant a DEXA scan, which is used to check bone density; i.e. to look for osteopenia or osteoporosis. The bone scan Jen describes above is for detecting bone mets
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