If you are not Stage IV but have questions, you may post here
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I have a question...i was stage 2 grade 3 with all treatments and surgery completed as of 2 years ago. I now have places that my GP thinks are skin cancers and sending me to dermatologist. If they are, would it be considered a recurrence of BC or just skin cancer? Thanks in advance
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I've had skin cancers all my life & had MOHS surgery for 5 basal cell cancers so far. I see a derm doc every 6 months who freezes 12 pre-cancerous lesions & takes biopsys as necessary. They have never been related to breast cancer. Hope that's true for you.
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Thank you so much for your response! That eases my mind a little. Now..we all know that waiting game that drives you nuts starts now.
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Hello everyone
Early posts I have asked questions about lymph nodes on my right and my left arm. I went to do ultrasound and they were negative. I thought that was it now it is something else. Several days ago, end of June, I started to feel some discomfort on left side on the back of head. I touch the back of my skull from the neck up and there's a bump little above the neck. It's hard and feel like a sore, seems like it radiated to left side. My right side feels OK. Could this be early symptoms of brain Mets. What kind of screening do I need. Please note I don't have headaches overall and no problem with balance or coordination. I do have a problem with sleeping late which ended up only 5 or 6 hours which I'm trying to change. Don't know if this is a cause.
Thank you for your help.
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Hi Houston, your bump could be anything but early brain mets. If it were brain mets you would not be able to feel them from the outside so to speak and you would possibly be showing other more definitive symptoms.
My suggestion would be to make an appointment with your doc to get it fully checked out......as for the sleeping? well, having problems with that seems to be pretty normal among the BC community. Again, chat to your doc about all the things that are concerning you, perhaps he/she can offer some solutions.
Take care and try not to worry too much.
Love n hugs. Chrissy
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Hi Chrissy,
Thanks for your advice. Should I make apt with a PCP or an OC? Also, I'm wondering if anyone has had brain Mets and does symptoms affect the one side rather than both sides of the head. Thank you everyone.
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Hi Houston, if you are still seeing your onc on a regular basis I would phone his/her office first but if not, your PCP is okay.
Brain mets can effect a lot of things depending on where they are and how big they are. Some people have a lot of symptoms while others have none and the mets are found purely by accident.
Houston, I think you are worrying so much about all this that you are making yourself ill at the possibility. Please remember, while all things are possible most things are not probable..........take a deep breath lovely and make the phone call to your onc and get it checked out as you need an answer as soon as possible.
Love n hugs. Chrissy
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One weird question.....,but I think so much about it... How do I know if I am having mets? Can not do scans all the time.. Does it hurts initially? I feel my body in general is pretty painful...
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Hi Anna, you are right to say you cannot keep having scans all the time due to the accumulation of the radiation effect. There is pretty much a rule that most stage IV people live by and that is, if a pain etc is something out of your normal and if it lasts longer than three weeks then it deserves to be checked just to make sure.
You see, most pains, discomforts, aches tend to resolve themselves before the three weeks are up so that's why we use that time.
As hard as it is to climb the hurdle that is fear it really is something that needs to be let go.......holding onto it only causes life to become miserable and it's way too precious to waste worrying about something that may never happen.
Love n hugs. Chrissy
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rdeesides, I'm following your posts. I too have rib tenderness. Ultrasound, X-rays, and liver enzymes were all good. Initially my pain was directly under my implant and tender to touch. They decided it was muscle tightness and possible cording betweeen the rib cage from Radiation and surgery. I went to pt and that helped but it is still there. We did lots of exercises and myofacial release. I am now having aching/fullness In what feels like under my ribs and sometimes on the right side of my back under my rib cage. It almost feels like the stitch you get in your side when you exercise except it's almost constant if I think about it. Obviously I am thinking liver so even though I don't want to,I'll bring be making a call to my PCP/MO to figure it out. Your pain is not on your cancer/treatment side so that is a little different but everything gets so out of whack with these treatments who knows. I'm interested to hear your updates.
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Legomaster,
Just saw your post. Yes, I have had abdominal CT scan, chest CT scan, colonoscopy and chest x-ray. All came back clean. We are going to run a Guardant 360 blood test tomorrow (like a tumor marker). I wish dr had ordered a bone scan because I have heard they can pick up things a CT scan can't. <sigh>. I am relieved my pain is not on my right side due to liver, but still... something is not right and it is unnerving to not have a diagnosis. If it was on my cancer/mastectomy side I would attribute it to rads/surgery, but alas, I don't know if I can since it's on the other side.
Keep me posted on your pain as well. Someone on one of my FB groups had a similar situation and she indeed moved on to Stage IV. However, in her case both the chest x-ray and the ct scan showed issues, whereas ours did not. Let's remain hopeful.
Rebekah
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I had a bone scan yesterday for pain in my right hip an thigh. Today I seen my oncologist he said I have a spot on my hip. He said it's a reoccurrence of the breast cancer. He also said I may need a hip replacement or pins. I'm waiting for a MRI appointment to see what's next. My question is don't they have to do a biopsy to say absolutely its cancer? I asked if he was certain and he said yes. Other than severe leg pain I feel great! No weight loss no fatigue more than normal.
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LoveBig
I think the following links might answer your question:
good luck,
Amica
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I have a question for anyone with Stage IV bone mets.
I am not diagnosed with that yet, but it looks like it may be headed in that direction.
My question is: Did any of you have elevated Calcium blood levels associated with bone mets?
Because I have elevated calcium level, (I haven't had a bone scan yet, so will know more soon.)
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Hello, I am hoping someone can help me with some questions and fears that I have. I had many scans done after I was dx'd in October 2015. A CT scan of my lungs showed a lesion and they could not rule out mets. After my chemo and radiation, the lesion was still there and had grown slightly. Since then the lesion has remained the same, but I am scanned every 3-4 months to check it's progress. The latest scans have shown ground glass, and the radiologist wrote that mets is less likely, but that it is possible that I have pre-invasive or invasive adenocarcinoma. I am scheduled for a PET and depending on the results, I may need a segmental lung resection to determine if it is lung cancer, breast cancer or just a non-cancerous lesion.
Along with the lung issue, my latest CT scan shows a new lesion on my liver. I went for an US, but because it is so small and way in the back of my liver, the US was inconclusive. I will go for another CT-PET or MRI in October to see if the lesion has grown.
As you can imagine, I am scared. Is it possible that I had lung cancer when I was dx'd with BC and that the chemo I did did not kill that cancer? Could it be mets and it's stayed stable since October 2016? Could it be possible to have both lung cancer and breast cancer at the same time, meaning that I (perhaps) have mets in my liver and lung cancer? I am a little overwhelmed. Can someone chime in with some knowledge of what can be going on? Any words of encouragement or support are greatly appreciated.
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Hi Amica, not that I know of but we weren't doing blood work. I had a sore back for about six months. Then one day I sneezed and went down. L4 had fractured. Of course everyone thought it was a disc problem but eventually I had an x-ray and whoops! Into the operating room with me.
I hope your problem turns out to be benign.
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Pajim,
Did your back hurt at night? Was the pain constant or did it come and go? I have had a sore lower back/radiating to my glutes for seven months. I assume that I pulled something while doing yoga, but am starting to get a bit worried as it is not healing even though I go to physio and do the exercises prescribed by my physiotherapist.
The pain is intermittent, does not hurt at night, and has not gotten worse over the past seven months. What do you think?
Thanks so much.
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It hurt sometimes. Not all the time. And felt like muscular pain rather than bone pain. I really thought it was something else -- cancer recurrence didn't even occur to me. But what was happening is that the cancer was eating away at one of my vertrebrae. The muscles knew the bone was getting weak and were trying to support it. Good muscles!
If you've had this for a while and it isn't going away, ask for an x-ray. That's easy enough, not expensive, and if you have major bone problems the xray will find it. If the x-ray is negative it doesn't mean you don't have a problem but if you have a major problem the x-ray will see it. That's a convoluted sentence but you know what I mean.
The general rule of thumb is if the pain hasn't gone away in three weeks it's time to see a doctor. Which you have. But if it still hasn't gone away in months, it's time for some imaging.
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Amica, just seeing your post now, and yes, I my blood calcium level was high when first re-dx'd, and has remained high the past 4-1/2 years -- in the 9.0 to 10. 0 range. Not sure what else can cause this, but perhaps you've had some good news by now and not so worried about it. Please let us know.
Stephanie, I just want to add to pajim's helpful information... The fact that your pain hasn't gotten worse is probably a good sign. However, pain that cannot be traced to an injury and lasts for 7 mos. in spite of P/T really needs some imaging IMO. What did they dx you with the first time to recommend P/T? Have you had an MRI? That's what I would strongly recommend to pinpoint whatever is going on, and hopefully give you peace of mind going forward. Deanna
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Denna and Pajim,
Thanks for your input. I actually have never spoken to a doctor this issue. I booked physiotherapy on my own. My physiotherapist thinks that I did something to my lower back (he never gave me a diagnosis) which is causing pain in both of my glutes. I happen to be seeing my radiation oncologist next week for a regular check up and will mention this to her.
Pajim, my issue also feels very muscular, which is why I never mentioned it to a doctor.
Hope you are both doing well and thanks again.
Stephanie
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Denna and Pajim,
Thanks for your input. I actually have never spoken to a doctor about this issue. I booked physiotherapy on my own. My physiotherapist thinks that I did something to my lower back (he never gave me a diagnosis) which is causing pain in both of my glutes. I happen to be seeing my radiation oncologist next week for a regular check up and will mention this to her.
Pajim, my issue also feels very muscular, which is why I never mentioned it to a doctor.
Hope you are both doing well and thanks again.
Stephanie
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just curious. How much do you pay for stage 4 pills like ibrance and such. I have medicare b and d. Or is it under b like iv chemo is? What's the average out of pocket for stage 4 pills with medicare b and d? Oh, i have aarp supp f too.
Thanks!
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Rosabella, it's going to vary quite a bit depending on the meds a patient is on. Ibrance, as you may know, is notoriously expensive -- around $11,500 (retail) per month, depending on what state you're in and pharmacy used, and the problem some patients run into is that Medicare "donut hole," or the gap in coverage. Other than the donut hole, with an "F" plan, you should be pretty well covered.
If you haven't already, you may want to also ask your question in the forum that deals with insurance issues, as well as using the "Search" feature to see if anyone else has asked the same thing recently. I'm suggesting this because I think your question will get more attention if it's a new one about Medicare coverage, rather than kind of buried in this particular thread.
Hope this helps some, and here's a link to that other forum. https://community.breastcancer.org/forum/113
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thanks dlb
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Hello - just popping in with a wee question. Am I keeping my head in the sand by not contacting my specialist just because I feel dreadful. I have no persistant pains - things that just come and go as you would expect given the nature of the beast. I am on Letrozole and Blood pressure meds both of which when I look up their side effects - I pretty much have them covered. Or have I just hit a road block after 2 and a half years of fighting and am a bit weary.
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Hi, Helen! I don't think you have your head in the sand, and chances are whatever has you feeling so dreadful isn't related to bc, but it certainly can worsen everything when you start thinking that way. What I would suggest is maybe a complete workup by your PCP (or whatever you call your primary doc in NZ), to see if anything else is amiss -- thyroid, blood sugar issues, adrenal fatigue, etc. If he/she can't find anything to fix, then maybe check in with your oncologist -- if only for complete peace of mind. But from the little bit you've shared here, I don't get a sense that you're dealing with an undx'd metastatic recurrence, but possibly something else out of whack, and possibly a touch of depression or PTSD, both of which are very common after bc tx. So I'd definitely start with (1) Making sure you don't have something else physically going on and fixing anything you do; and then (2) Looking at lifestyle changes to get your mind out of the bc rut, like spending more time doing things you love doing, maybe taking up a new hobby, planning some getaways to change the scene and ge around people who don't know and relate to you as someone with a bc history, spending more time in nature, etc.
Just my take on what you've shared, but don't continue to suffer. Make those appointments and get back to feeling good! Hugs, Deanna
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Did anyone have bone mets that a PET/CT missed but a bone scan found?
I had an 18F-FDG PET/CT in May that came back negative for bone mets (I hear 18F NaF PET/CTs are more specific for bone mets but we werw looking for metastasis in general), but a recent MRI shows increased vascularity in my sternum and the radiologist recommended a bone scan. I understand doing an 18F NaF PET/CT is probably off the table because it would be too soon after the previous one on terms of radiation exposure but would a bone scan really see something that a PET/CT didn't?
I'm slated for a BMX and reconstruction soon but if it's stage IV then I would probably choose a different surgical option.
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I recently had a PET/CT which showed a possibility of a met and was recommended that I have a nuclear bone scan. This was done and picked up a whole lot of mets that did not show up on the PET/CT.
If possible, have the bone scan done as that is best for picking up bone mets where as PET/CT is best for soft tissue tumors.
Good luck and please let us know how you get on..
Love n hugs. Chrissy
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Hi everyone! I felt a lump under my armpit (same side as I had breast cancer 5 years ago) last week and called my Dr. and had a CT scan done yesterday and have a ultrasound scheduled for coming monday. My Dr. said that she is very concerned about the lump and infact she could feel 2 additional small lumps. I'm very nervous and having a very hard time waiting for all the reports to come in. Has anyone else gone through this? Are these lumps symptoms for recurrence or of lung cancer?
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4love, my first thought would be swollen lymph nodes, which could be caused by a non-bc related infection somewhere in that general area. Did your doc mention that possibility?
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