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Hi All,
I worry about everything medical - ever since being dx'd Stage 3...(Very large BC, Grade 3 and +tive lymph nodes).
Yesterday, morning, I had a bone density test. And, am not sure why I haven't heard back from my MO.
I am now worried about possible mets being found from this test?? I read somewhere on the internet that mets can be found on a bone density test. So, now I am very nervous. I don't have bone pain but I understand you can have mets without pain...
I am taking anti-anxiety pills to get through the waiting but am still scared.
Does anyone know if mets can be found on a bone density test?
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scared, I don't believe that bone mets can be discovered from a bone density scan, they are usually found with either a bone scan (totally different scan) or CT/Pet scan.
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I recently had a bone density test and felt the same way! I also read it can detect cancer. I did not get results for a week, and everything was normal. Some women on here reassured me that the test doesn't find mets, but I know how you feel! Cancer makes every test stressful.
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Scared, I'm not 100% sure. Like GG, my first instinct was no; but a quick peek at some on-line info' leads me to believe that it's possible. HOWEVER (and this is very important) -- I think the radiologist would need to be trained to look for mets, and that's not what they're looking for with a DexaScan. And I'm not even sure radiologists read DexaScans (???), since they're rather inexpensive tests. I have a feeling they're read by techs who probably aren't trained to look for anything beyond mineral density.
I'm curious why your MO ordered a bone density test. Have you been on an A/I for an extended time? My personal experience has been that tests that come back with concerns usually get the first calls, and those that show nothing out of the ordinary tend to get shuffled to the bottom of the stack. There would be no reason to withhold info' from you, especially if they had results that require follow up. So try not to worry about it. How soon did they indicate you should expect to get results? I'd maybe call the office tomorrow morning if you haven't heard from them, just so you don't have to stress about it over the weekend. And let us know what you find out!
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Thanks GG27 and Kathy! That really helps!!
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Thanks Deanna - the tech did say they would be read by the radiologist...
And, I had it done - as a baseline - as I just recently started an AI...
Will keep you posted!!
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I meant to add that I too had it done as a baseline when I started an AI.
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Deanna, thanks for the input and thanks everyone for the encouraging words. I have thought about PTSD and there is probably a little truth to that. I mean let's face it. Cancer comes out of nowhere and you are sent on a wild ride for months. One appointment after the next. One procedure after the next. I went into mission mode in the beginning. I was just on a mission to do everything and get it done fast. Then the dust settles and I was a little lost. I felt shell shocked. So can I see PTSD as a culprit possibly. But honestly I don't believe that's the main issue. I just feel drained. My brain won't work and my muscles ache. I get out of breath if I'm up too long and if I am standing for more then 15 min I feel like I ran a marathon. This feels a lot like I did when I was severally anemic. I did go to the Dr and he thinks the tamoxifen has done this and even though I've been off of it for 3 weeks that this is just what I'm left with and that this may be my new norm. That just seems crazy to me. I was fine 4 weeks after the BMX and now 5 months later I've tanked. But all my bloodwork is fine so it must just be how this goes for m
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Sorry Mom2fourplusmore to hear that. I understand and feel your exhaustion more than you know. Different reasons for me, treatments etc, but same result as you have. The main thing I would recommend is some light exercise (if you can do it). Sometimes just moving, whether it be a walk or some other form of exercise you may like can help. Even 5 or 10 minutes can really clear the cobwebs and may help a lot with fatigue and help build some endurance so standing should not be as hard. Unfortunately, treatment can do this for a while, even after you are done. I would also recommend lots of protein as well, to give you something to fall back on.
Good luck with everything and hope it will lift soon.
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Mara, thanks I didn't think about protein. I will have to try to see it that can help. And I am going to start to do my usual walks again and see if that helps. Thanks for the advice. It's nice to know I'm not crazy and other people have the issue too. Wish no one was in this position. Hope you feel better soon.
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Hi All - just an update...my bone density test came back normal...Thanks again for your support!!! :-)
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Great news Scared!
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Mom2four, tamoxifen could be causing your issues. It takes a while for the drug to 'wash out' of your system. I do agree you should check that you are not anemic and that your thyroid function is OK.
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Hi everyone, My Mom has had 4 cycles of chemo for stage 4 her2+ breast cancer. She has mets to the bones and liver. All labs so far have been normal and her tumor marker has decreased by 50%. She had a pet scan to see how the chemo is working, overall improvement of all spine /liver lesions, however one new lesion was seen in the liver. Her onco is changing or adding a new chemo drug. Not sure if he is adding it or changing one of her meds. We were all so happy with the improvement but then when he mentioned the new liver lesion we were scared again. Has this happened to anyone else? She starts cycle 5 tomorrow. Thanks for any information you can give us.0
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Trmcoll different chemos hit differently in various parts of our body so it does make sense. There was an article about a new drug for lung cancer in Mexico and a friend urged me to try it. I tried to explain it wouldn't work for the cancer I had but she thought I should try anyway. Doesn't work that way. The chemo has to be targeted for where the cancer is. Wonderful that your Mom's markers have gone down!!! It sounds like her docs are on top of her care. Give her a hug from us. And one for you, too.
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trmccoll8696, Sorry to hear of your mom's stage 4 and progression. It is unfortunate, but if a chemo is not working, then her onc would want to try a different chemo, even if it was OK for her to handle side effect wise. The reason is that if it is not working, they want to make sure they can get something to keep new mets away or shrink them down.
This is the way it can be with stage 4. The goal is that we want to be on a particular treatment as long as possible. Scans tell us if treatments are working, if not, we are put on a different treatment. This can happen a bunch of times. Sometimes the cancer outsmarts the treatment or even changes hormone/HER status. This is very hard to do for sure. I wish you the best.
Make sure you also ask the onc about changes in treatment to get all the information you and your Mom need as well so you are fully briefed. Good luck to you both.
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Hi All,
I was told by my current MO the bone scans (to check for mets) are routinely done one year after the first one.
But, my previous MO told me - the protocol is bone scan to check for mets - ONLY - if there's something indicating mets in the bloodwork and/or you are having symptoms (and, if your last bone scan was abnormal).They, also, said repeated bone scans can increase the likelihood of leukemia.
So - I'm really confused and would much rather have the bone scan - ONLY - if I have symptoms and/or something shows up in bloodwork... Scans take my anxiety level into a whole other dimension of anxiousness....
But, then, I'm wondering if my current MO wants me to have one after one year - to be extra vigilant due to it being Stage 3?
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Scared67, Though I can't answer your question about your MO specifically, I can say that I had a bone scan and CT scan when I finished chemo/Herceptin in 2015. I was found to be cancer free from the neck down. I was not scanned because I had symptoms. This is something my cancer clinic does routinely. I would not specifically worry about your situation being ominous because your MO wants to give a bone scan.
Regarding risk of leukemia and bone scans, ask your MO about any specific concerns, what the chances are etc. I would not presume to try to unravel that information.
Now, I know you see that I am stage 4 BUT this was because I had a brain met that was too small to see on initial dx. All the chemo I got would not pass the Blood-Brain barrier. My systemic treatment in 2015 was successful due to no mets from the neck down.
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Scared if you have a baseline scan then I don't see the point of a scan without symptoms. I'd try to get one every 5 years unless I have issues. It all just adds another layer of stress. Maybe your new onc just wants his own team reading it?
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I had the whole digestive system checked out right after I visited the urologist, thinking I had another kidney stone. My birth Mom had colon cancer, so I have had my colonoscopies done, as well as upper GED.. EGD? upper scope.
Sorry so late in responding.
I saw a new OB/GYN on Monday. I hate seeing new ones, and thought I wouldn't like the guy, but, in all honesty.. I will continue to see him. He did a biopsy from inside my uterus... now waiting on results. They also did an endoscopic ultrasound of my uterus. They did it before he saw me. My oncologist had sent them a note.... He didn't mention the ultrasound, and I was so tired of waiting around the office all day, I didn't even bother to ask. It kind of came back to me after I left, what he had said. That he would call me as soon as the results came back, and to set up an appointment on the 19th... I'm thinking, if the biopsy was ok, there would be no need to go back on the 19th. So they probably did see something, but I am glad he didn't go into the "could be" scenarios. Of course, he will call on Friday... my birthday.... sigh. I bled a lot on Monday after the biopsy. It slowed down for a bit, but it is back, and it feels like it did back in my earlier days, like a water balloon just waiting to pop. If the holidays aren't stressful enough... let's add on waiting to hear about possible cancer.
My emotions have been all over the map today... angry, wanting to cry, wishing I could talk to my Mom (who passed away 31 years ago), wishing my youngest daughter didn't live across the country. I texted her pictures of her horse and got no response. I posted video of him on FB, and got no reply from her... I miss her so much. I was dancing around the kitchen this morning... If I had the energy to hit something... I might. I'm scared, my husband is scared, my best friend is sick, and hasn't called...
ending the pity party... sorry.
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MelsMontie, of course you're scared. It is never easy to wait for results. What you are going through is not a pity party, just a reasonable person who is anxiously awaiting results. No answers here, just my best wishes for you. Do let us know what happens if you can.
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Thanks Mara and Barbe!!
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Thanks Mara, and I still wait. Today has been a crying spree. A LOT of crying.
If you have uterine cancer after going through breast cancer, is that considered mets? I know BC usually goes to the bones, liver, and brain, but I don't know about uterus, or ovarian. I just wonder if it is cancer, if it is caused by the hormones they put me on... Not that it matters, it is just another fight to get on with...
guess I am on a jag, if it is cancer I need to clear out some of the overwhelming junk around this house. I am getting rid of about 1/3 of the clothes in my closet... it is bad.. I still have some clothes from college. I haven't fit in them... well... since college 35 years ago. Those are actually in the attic. But all pants that don't have pockets, are going. Finally following my FIL's advise, if you haven't worn it in the past year, you probably won't, get rid of it. Heck, I still have some of my Mom's clothes - and she has been gone for 31 years. She was much smaller than me, I will never fit in them. I hate being a clothes hoarder. But I am. 8 years ago, when we moved here, I had 61 lawn bags full of clothes to give to charity. Laughing... at least I finally found the tote box I had put all my sweat pants in last spring. I don't work, so my life consists of horses and house. I have shorts or sweats... a few pair of jeans I never wear. North Mississippi, it is either cold, or hot... not much in between.
I am still so on edge. My daughter (the one who lives here) called earlier, and I immediately feared it was the doctor calling with the results... wanting them, but not wanting them. My best friend texted and she is going to come down tomorrow for my birthday. She said she would help me clean out, but I text back that cleaning house on my birthday is the last thing I want to do. If I haven't heard yet, maybe she will help me decorate the house for Christmas.
Wish I had more Xanax. Sometimes, I wish I could drink... I wasn't a drinker before chemo, but now after... even a small sip burns. I smoked pot in my younger years, but I am actually mildly allergic to it. My sinus cavities swell and gives me a wicked headache. no vices for this girl.
As everyone knows... us more than most... CANCER SUCKS
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Melsmontie, did he do a PAP smear or a biopsy? He wouldn't have seen anything either way when he told you to set up an appointment. Docs never give results over the phone. Glad you like him, that's so important.
As for cancer, if it's breast cancer cells then that is a recurrence but of its ovarian cancer it's not a recurrence it's a new cancer.
You were NOT given hormones for your treatment, you actually had hormones stopped for treatment so don't add that fear into the mix. As you get older all sorts of new issues arise that aren't cancer related so glad to see your onc is looking out for you. Please let us know the results and let me be the first to wish you happy birthday for tomorrow!!!
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Thanks Barbe, Well, I called, and let's not all faint... they immediately called me back... biopsies are benign. PTL Thank you God. I don't think he did a pap smear, but yes, he did do biopsy, or several, but I thought maybe they might have seen something on the endoscopic ultrasound they did down there. I am in such relief mentally. Physically, still bleeding and hurting, but the soul is happy, and yes... Thank You for a good birthday tomorrow. I have cried all day... so glad I can stop that now. Now, to bundle up, go clean stalls, and let my horses up. They will be getting big relief hugs.
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Thank God is right! So very truly happy for you sweetie and thanks for letting us know. Like I said, we like to get good news.
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What are symptoms of brain mets? I've been having some strange headaches and I normally don't have headaches except for sinus related.
Also, why do some doctors say that it doesn't do any good to find a a recurrence early? If you have mets somewhere, wouldn't it be better to find them before they spread to several places/organs/bones?
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jpr153 - If you are worried about brain mets, get a scan. Headaches could be anything, but with your history of HER2+ cancer, get a scan. Get a full body scan, not just the brain.
I don't know any doctors who say it doesn't matter if you catch the mets early. Perhaps these are the doctors who have written off metastatic breast cancer patients entirely. These are not the doctors we listen to.
The truth is you want to catch mets early. If you have limited mets, you have better treatment options.
Let us know how it goes.
>Z<
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jpr, what you may have heard is that docs don't routinely scan for mets without symptoms, which isn't quite the same as not wanting to find mets early. The logic behind not scanning in the absence of symptoms is two-fold... first that repeated scanning carries its own risk, as well as being costly; and secondly that questionable scan results often lead to unnecessary biopsies. Routine scanning to check for mets might find something a bit sooner, but the constant anxiety would be far worse than finding something a bit later.
In general, a good rule of thumb is to allow 3 weeks to see if odd symptoms or pain goes away. Most of the time it will. And while headaches can always be something serious, things like visual disturbances and/or balance issues seem to come up as concerning for brain mets more often.
Hopefully, your headaches are from something entirely unrelated to mets, but do keep us posted! Hugs, Deanna
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zarovka and dlb823:
Thank you for your replies. My GP thinks my headaches may be sinus related but without congestion, I am skeptical. I will take the antibiotics he prescribed but will pursue a CT scan if I am still having these symptoms in 3 weeks.
My first oncologist was the one that made that comment. I didn't feel like he had my best interest at heart.I have since fired him and found another that I can trust. 😌 I just wish I hadn't put up with the first one so long!
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