If you are not Stage IV but have questions, you may post here
Comments
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Goodie16: THAT is just awful and everyone's nightmare who has breast cancer. Was it definitely a breast cancer met? Wow. Definitely NOT supposed to happen with an OctotypDX 9....I am so sorry. I would have thought you were 90%+ out of the woods on this one. (((HUGS))))
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i have strange sensations in my skull, not headaches or something. Just areas of slight pain/discomfort that changes in areas, like making rounds in an area at a time. Alo sometimes feels like fluid is flowing in there, different areas. I have no other problems that would say something wrong in brain. Skull? Its not a head cold, i know what that feels like and im not sick. Anyone? Tia
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For anyone who's insurance denies you tests...try this!!
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saw my pcp today about the skull pain/discomfort that's been around for at least 2 months. It changes spots in terms of where and somtimes feels like headache. It doesnt get so bad that i reach for meds but its always something on the skull or underneath. Ikept saying scalp and so she thought oh you have seborheic dermatitis. Yes i do, since 2005. But that gives me itchies not pain and my scalp/hair doesnt hurt. So got her back around to skull.
She checked me out. Nothing stood out to her and said maybe sinus even though im not stuffed up or draining. So she didnt know what to think. She offered mri of brain, bone scan to look at skull, or ct of sinus. She kept saying if it was a skull met itd be pretty painful and not letting up or changing spots. I asked her which one. Ive read a few folks here saying anything from no symptoms to some pain/headaches. I also told her about thid fluid moving thing i feel at times. Just weird. Not anything ive experienced in the cold/infection arena.
So she saw i was nervous and said lets start with brain mri which gives details and go from there. Maybe it is some weird head thing that isnt bad news as she thinks it is. So we'll see. I dont think its all a cold as this has been going on for a long time. I just ignored it until my friend said see doc.
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Hi Rosabella, I know the exact thing you are talking about as I also have this problem. Like you the painful spots move, they can be sore for just a little while or days before they get better. After many scans and tests which showed nothing, my docs came to the conclusion that the pain is nerve endings firing for no particular reason. Like you, my head gets so sore I can't bear to touch it but I now know it is nothing to cause me concern, just another gift from having cancer.
Hoping you get to the same result after testing is done.
Love n hugs. Chrissy
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Thank you Chrissy.
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Hoping for some feedback...
My head hurts and dosen't stop. Started as a mild headache that was just annoying to now I am at migraine level several times a week. It NEVER is gone 100%. Been this way since middle of September. I went to the ER once, had a CT that was clear in November. Even released my head still hurt, however the next day I felt good for several hours before it came back. Only time in the last 5 months I had no headache.
I have -
Had my eyes checked, cut out 99.99999% of alcohol, seen a chiropractor, drank more water, CT scan mentioned above and a thyroid related surgery (one known symtom is headaches) in December. Nothing has helped and they are getting worse.
Is it possible the CT missed something or it was too small and something would show up at this point? I discussed this with my MO yesterday....he basically didn't care once I said the CT was clear.
I have an appointment with my general doc Monday, #1 on my list to discuss. Any suggestions? Push for another CT? Are these symtoms related to brain mets? I do not have numbness/tingling/loss of use stuff. I do have dizzy/light headed spells when they are the worse.
No chemo, no tamoxifen, no cancer related treatment that would cause headaches. I'm at a loss....
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i just had mri of my brain for 2 mo of headaches. Found polyp or retention cyst in my maxillary sinus. Fu with pcp on mon. Nothing else off. So guessing I'll be having it removed surgically. Says these are benign on dr google. Check your sinuses. Gl
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greeneyes-perhaps a referral to a good neurologist? I think mets would have shown up. Best, MJH
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Greeneyes, I'm so sorry about your unrelenting headache. That sounds absolutely miserable. A few thoughts... A brain MRI is the scan most commonly done to rule out brain mets. Not sure if a CT shows as much or why the MRI is more often used, but you might want to ask your onc or PCP if an MRI would show anything different than the imaging you had at the ER. The fact that it's gotten worse absolutely merits additional imaging.
You mentioned not being on tamox, but what about normal menopausal symptoms? Could you possibly be perimenopausal? Fluctuating hormones are a big cause for migraines, although every day would be quite a severe situation.
If it's any reassurance to you, while brain can be the first metastatic site for ER+ PR+ Her2- bc, it's uncommon. Most of us show up with bone mets, probably followed by something going on in liver of lungs.
I totally agree with the other suggestions as well -- both checking sinuses and seeing a neurologist if your onc or PCP can't make a dx. I would also be sure to ask your PCP for a very compete blood panel, including blood sugar, etc.
Good luck! Glad you came here for some reassurance. Please keep us posted on anything further you find out, but absolutely insist on whatever tests are needed to reach a dx, pain relief, and peace of mind! Deanna
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Thank you ladies, all great feedback! I'm 36...so not thinking pre menapause but who knows at this point. lol Still could be hormonal of course. My aunt asked about that as well. More blood work it is and I will ask about an MRI.
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I agree with much that dlb823 said. Def get a brain MRI, as a CT is not the best way to diagnose brain mets. While it's unlikely that you have them, it can and does happen. I had a solitary brain met and it was treated with surgery and gammaknife. I've been NED for almost 3 years now. Get it checked out! Headaches are absolutely miserable.
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TNMTNGAL: Great tip on the hack for insurance denials! I just had some dumb cobra/ insurance drama, and it's great to know suggestions like this for future reference. Hope to NOT need it, but thanks for the heads up! Gonna keep it in my back pocket!
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Wondering if posters on this thread are aware of up and coming proposed changes to BCO site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
GP
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You're very welcome!! @GroovyWilma0 -
@Rosabella I have those polyps in my sinuses. They didn't take them out and said they're common. Good luck
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In Feb, 2014 I noticed a "dimpling" in my right breast, looked kind of like cellulite but I was barely an A cup. So one thing led to another and I was dx with stage 3c ILC, 10 0f 11 positive lymph nodes left breast, bilat mx and LCIS in the right breast. Chemo, 31 rads, implants. I've been taking Arimidex since and in the past 4 years I've had 2 bone scans for lower back pain (arthritis, ruptured discs) and a chest x-ray once for a persistent cough which was fine, tail end of a cold and got better on it's own. My doctor does TM's at my insistence, CA15-3, CA27-29 and CEA. all have been fine until 6 months ago when my CEA was 3.1. Normal is 2.5 so hardly enough to worry about. About 2 weeks ago I noticed a lump on my BC side, feels like a thumb, it's just above my scar and sitting on top of the implant. I had my biyearly apt scheduled with my MO last Monday so I mentioned it to him thinking he surely would say it was scar tissue, well he didn't. He sent me back to my plastic surgeon to see what he thought and he concurred and sent my for an ultrasound which came up abnormal so now I'm having a biopsy on Tuesday. I am so freaked out! Could be nothing, could be a local recurrence but the thought of BC rearing it's nasty head again has me terrified. And then the MRI and bone scan and all that may follow to look for mets....ugh.. So I've been off BCO for months, I find I think less about it that way and I'd finally gotten to the point where it wasn't the first thing on my mind when I wake up and here I am, awake an hour before my alarm goes off and typing on BCO. Nothing much to be said, I have to wait till Tuesday, and to make matters worse, I am scheduled to have a total knee replacement on Feb 14 so now I don't know if that'll still happen. Oh, and my CEA is now 4.8, still not terribly high but why is it creeping up? I guess I don't have any questions but wasn't sure where to post this.....Here I go again.......
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Hi Genny, yes, cancer sucks big time alright and it's never pleasant when we think we've finally begun to live again.
You said that you are due a total knee replacement soon as well as your markers being above normal........were you aware that inflammation in your sysystem can also make your markers rise? Just a thought as to an explanation of your markers rise rather than cancer.
I know you don't want to face the possibility of cancers' return but once we have been dxd it's always a possibility but not necessarily a probability.
It's a good thing that your onc has sent you to your surgeon for further consultation. Please let us know how you get on.
Love n hugs. Chrissy
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Thanks Chrissy, you are right, CEA rise could be from inflammation, were it not for the lump I probably wouldn't give it much thought. I'd almost forgotten how hard the waiting and not knowing is....almost. Nothing I can do now, I'll have the answers soon enough, I'll let you know.
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Willbe thinking of you Ginny. Here is to Tuesday coming quick!
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Hope I'm posting in the right place. Went to dr today because I have a hard, movable, oblong knot on my right rib cage below my implant on nonBC side. It hurts. It is appropriate 1 & a half inches long by 3/4-1" wide. It feels like the original one I had on my left side that was BC. But it's movable. I've seen where women have had subcutaneous BC. Anyone here had it or signs or symptoms? Any info would be much appreciated!!
X-ray wasn't able to be read while I was there. She said I may need an ultrasound
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Saw my primary doctor today....he just wants me to take a pill.
There is a reason my head hurts non stop. A pill is not going to fix what ever is going on not to mention I am supposed to take the med and increase dosage each week until it affects my blood pressure and/or heart rate...then I know my max dosage. Really? He will not refer me to a nerologyst until I try three meds for a min of 3 months or have side affects. Sigh.... 0 -
GreenEyes-If it were me, I would get to my oncologist to have these symptoms thoroughly checked out.
Genny- thinking of you just now. The waiting game is horrible. May the force be with you as you wait for results.
TMMTN-glad you are getting the imaging. I wish there was a "forget" pill we all could take while waiting.
Best, MJH
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Dr just called. X-ray normal. So they said to follow up with my regular dr. WHERES THE ORDER FOR THE ULTRASOUND?! }:
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greeneyes- my apologies, I see that you have been to MO and had a CT. You must be so frustrated. Easy for PCP to say wait til we try meds before neurology consult. Meanwhile you are in agony. Thoughts are with you. MJH
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Dr just called with ultrasound order! Thank God! I don't see how some of you get through what you do. God bless all of you!!
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TNMTN- great! Now you can get more information towards resolution. Nice when MDs behave like good girls and boys! MJH
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TNMTN- great! Now you can get more information towards resolution. Nice when MDs behave like good girls and boys! MJH
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Thank you! I'm actually sitting in my drs office now to try to persuade her to just cut these things out to see what they are!
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I had the US this morning. I'm hoping the results are back and she can just go ahead and tell me the results! WAIT
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