If you are not Stage IV but have questions, you may post here
Comments
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Thanks. Just spoke with dad and he thinks it may be due to a medicine she took for constipation!? Apparently she did hit her head but no harm done. Must have a tough head.
A wedding is such a lovely distraction, now get back to sewing
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Papillon - what a scare for all of you. Thank goodness your mom is ok.
chrissy - looking forward to pics of the wedding. I have faith in you that you will not be attending in your undergarments. lol
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Thanks barsco. Hope you are doing ok x
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Just as a quick update, I finally heard back from my oncologist. She scheduled me for a PET scan. She said she was not anticipating finding anything but wanted to make sure. I will let you know the outcome when I find out. Thanks for listening.
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Kandy,
Hope all goes well!
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Kandy that's good news that your onc is on the ball........keeping my fingers crossed that all is well.
Love n hugs. Chrissy0 -
I am going to see my onc next month for my 6month, alternate mri/mammo every six months also. Here's where my mind is at any helpful suggestions/advice are very welcome. My onc tells me that if my cancer spreads to bones, liver brain, anywhere basically that it won't matter when we catch it, treatment/outcome would be the same. Yet, I keep reading/hearing that finding mets early/when they are small is key to control. Also, what has me worried, very worried, I am the only one of my chemo friends/suppport group who hasn't been diagnosed with mets. Most are younger women, 36-40 with brain/liver/bone mets. (I am 54) I am the only one with triple negative BC, not the "best" to have. So, do I instist on scans, pet scan, mri Cat scan of body, brain to be safe? had mri/catscan/chest x-ray when initialy diagnosed, never had a brain mri or pet scan. Just don't know what to do, and if my onc will even do testing without pain. I'm three years out since diagnosis.
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Msjag, if it were me I'd want an oncologist with a more proactive mindset. To some extent catching stage IV early may not result ultimately in a different outcome, however there is so much that can be done to treat mets and try to stabilize them or even achieve NED. This can mean a great deal to your ultimate longevity.
Your oncologist sounds tired and doesn't sound like he cares about YOU one way or the other. Do the ladies in your group like their oncs? Get a referral and go interview someone else to see if you have a good fit.0 -
Hi ladies, I've had a few scares over the last six months - but a negative breast lump surgical excision, oophorectomy & abdominal ultrasound and I decided to stop worrying and get on with life (easier said than done).
But my next symptom is one that really scares me - it's happened 3 times now over the past four weeks. While driving I've sort of blanked out - not passed out but for a second or two I have no idea where i am, its scared the crap out of me but within a couple of seconds it comes back to me. It's sort of like where am i and where am i going?
I started arimidex four weeks ago (coincidence?) and am noticing bone pain, stiffness, insomnia, liver soreness, nausea & headaches. Could my brain issue be a side effect of this as well?
I've also been really busy working two stressful jobs, maybe it's from this? The last time it happened was about 7 days ago. Should I make an appt with my GP or wait to see my onc on Oct 23rd?0 -
I would ask how old you are? Just cuz it's something my DH and I both chuckle about. We can walk into a room and can't remember why we are there. We call it old timers disease.
I wouldn't worry at this point because at some point we are so busy, as you say you are, our brains just can't process all that stuff and something slips.
Try not to worry unless you have some other concrete symptom such as pain, fainting, etc.0 -
Thanks chickadee, I was diagnosed at 39 & am now 41 - so I hope it's not old timers already!
It just scared me as I didn't recognize anything around me for those few seconds. I've been trying so hard to move on too. I guess I'll just monitor myself over the next weeks till I see the onc. I am prone to fainting after growing out of juvenile epilepsy, but luckily the incidences are getting further apart. Oh the joy of it all!!!0 -
Hi ladies,
I don't know if this is the right place to post my question....I had ILC, stage 3A, ER+, PR+ HER-. Finished 4 FEC, mastectomy (left) and 3 Taxotere. Tomorrow is my last Taxotere. PET scan was clear before the surgery. The problem is that my tumur marker CA 15-3 is high. It was 129.9 at the dx, 54 after the surgery and now - after 3 Taxotere is 50.1 I don't know what's going on. Tomorrow I'll meet my onc. but I'm so scared now. Any guesswork ? The range for CA 15-3 according the lab is <=25.
Christina
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Hi Kiss, your tumor markers could still be at that level due to cell death. Dead and dying cancer cells as well as inflammation can cause the numbers to be up and considering you are just finishing Taxotere it doesn't surprise me at all to see your numbers at what they are.
Good luck with your onc tomorrow.
Julie, those little blackouts can be caused by the Arimadex but please do monitor them and if they become more frequent or you start having headaches with sight disruptions go and see your doc.
Love n hugs. Chrissy0 -
Chrissy, thank you very much.
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Hello there. I've posted in this thread one or two times before, and I (along with everyone else in here, I'm sure!) so appreciate the time you lovely ladies take to answer questions. Thank you so much Chrissy & Barsco!
I had a PET-CT this week as follow-up to a suspicious spot found on my sternum during a bone scan. Fortunately, no focal bone lesions were found on the PET, but I did have diffuse increased FDG uptake throughout my skeleton. Has anyone seen this before? My MO is stumped. She says she sees this in post-chemo patients, but I am not post-chemo. And blood counts are all normal. I am being followed by an endocrinologist for osteoporosis (I am only 33), and I have emailed him at my MO's recommendation to see if there is any reason osteo could somehow cause a PET reading like that. I have also been referred to a hematologist. A few months ago I had an abnormal urine electrophoresis (to check for multiple myeloma as a possible cause for the early-onset osteo), but the follow-up immunofixation test came back normal. So I'm stumped. Anyone experienced anything like this before? One thing I'm concerned about is the possibility of bone marrow mets. From what I've read it's extremely rare, so thankfully unlikely, but is this something I should be considering? Does anyone know if bone marrow mets can present without bone lesions? Does it stay confined to the marrow alone? I've emailed my MO this question but thought I would pick some brains here too. Thanks, ladies.0 -
msjag, I just wanted to let you know that my MO says that if you are triple negative, and make it through 5 years after chemo, you are probably going to do very well. Those cells apparently don't run and hide like the Er+/Pr+ ones do, and so if you get all of those cells (as evidenced by no early recurrence), you do better. It is the other ones that seem to hide out even WITH chemo and tamoxifen and AIs, and so once you stop treatment, they can come out and play again, causing mets etc., and this is life-long.
But I do agree that your MO sounds a bit tired .... sort of being rather blasé about YOU as an individual.0 -
Just wanted to give you an update. I had my PET scan done today. It showed a 1.5 sclerotic lesion in the left pelvis. It had a SUV value of 9.6. She is scheduling a MRI to confirm then will biopsy it. Looking like I am fixing to join you nice ladies on stage 4. I will let you know. Thanks for your help and advice.
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Hi there. I'm 2 months PFC & currently having rads. I've been having knee pain that started towards the last cycle of taxol. My back has also been bothering me but not to the point where I need to medicate. Over the last few days, the knee pain has intensified and now my leg, arm have started to hurt. I had a pet scan 5 weeks ago & it was clear. I've brought this to the attention of my RO but she says it's due to the chemo. I was basically called a hypochondriac by my gynecologist when I went to him a year ago about the pain in my breast. He said bc doesn't hurt. The pain in my breast is what led me to go back to that dr in Janaury of this year. He dismissed me again. No mammogram, just a physical exam. I'm grateful I listened to my body and went to another dr which resulted in my diagnosis. Anyhow, I'm confused as to whether what I'm experiencing is se of chemo or something else. I just turned 41 & was very active prior to this, was running at least 2-3 miles five days a week and now I feel like I'm 90 yrs old. I'm triple negative, BRACA1 positive, and quite honestly scared out of my mind.
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Kandy - No offence, but I really don't want to see you on the stage iv threads. I found a post from Dec 2012 regarding sclerotic lesions, which are described as build up of the bone. Here is the link - http://community.breastcancer.org/forum/8/topic/797174 I hope that it helps somewhat. I am hoping that the lesion on your pelvis is nothing more than an old injury. Keep us posted.
graceforme - same sentiment goes out to you. I really hope that you aren't making your way to the stage iv boards. I do wish that the medical profession would shake the whole "bc doesn't hurt" thing. Mine was quite painful also. So glad that you were persistent in getting it checked. I have heard that chemo can cause ongoing pain for a while after tx is finished. I don't have any experience with chemo so hopefully someone with more knowledge will pop in to comment. Is there a chemo thread with others that have gone through chemo at the same time as you? Perhaps you could post there also. Hopefully the pain will start to ease up for you soon.
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Thanks Barsco1963, I really take no offense. Nothing against you ladies but that is the last place I would choose to go to. I am trying not to jump to conclusions but I do feel the chance of it being mets is great. I haven't had any injury, tumor markers are rising, and I have been scanned in the past and nothing was there before. Plus the SUV is worrisome. I am sure the MRI will be done soon, so I will keep you updated. Thanks again for supporting all us worrying souls. Y'all have a big heart.
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Thank you Barsco1963. The pain has subsided & pray that it only improves. I know others that have had joint/bone pain with taxol and it's just hard to know if it's a se or something else.
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Thanks Linda! My onc did say the same thing, even states at three years, TNs can do a little happy dance! But you know how our minds work at times, and not knowing is sometimes worse than knowing!!! guess its the the scanxiety time of year (plus my testing always comes in pink OCT when you can't get away from thinking about anything but )
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msjag, I really hear you about the scanxiety, especially in Oct. I am having my next round of scans and labs the last week of October, and I try not to think about it for now. But it is always sort of there, in the background. Meanwhile, I am just trying to ignore and deal with those aches and pains, remembering that many of my friends are dealing with the same issues, and they do NOT have BC ... sad to say, but getting older is just not for sissies!!!! But it IS sometimes difficult to remember that not everything and every change is BC-related. Sending a gentle cyber hug your way.
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Had my MRI done today, waiting to hear the results from my oncologist. Have to admit, I am not a very patient person. My nerves seem to be all over the place. I am quite sure after reading the report from the PET scan that a biopsy is next on the agenda. I will keep you informed. Thanks for listening.
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Kandy, I'm keeping my fingers crossed that it's good news for you!
Love n (((((hugs)))))). Chrissy0 -
Kandy - Hoping that you get good news from your onc regarding the MRI. Keep us posted.
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hi ladies
im asking this on behalf of a good friend, we went through cancer treatment together. She refuses to join the on-line community so i told her i would post on her behalf
she has had a lot of knumbness and tingling of her lips and tongue. Her GP is concerned enough and wants to send her for a scan. She is convinced these are symptoms of brain or spinal mets. I have never heard of that
could her symptoms be a sign of mets
I just want to take the opportunity to thank all the stage iv ladies who offer advice on this thread
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Looks like I am going to join your group. I will post more when I know more. Thanks for all the words of encouragement during this stressful time.
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rozem, I had problems with my face, tongue, lips during and for about a year after chemo with taxotere/cytoxan. I developed peripheral neuropathy, and it actually started in my teeth and left hand, got worse, stayed really bad for over a year, then has gotten somewhat better with occasional flares. My face felt wooden, very tired muscles so that I could hardly talk or smile, my tongue and teeth tingled/vibrated. So it MIGHT be related to treatment, but I think it sounds like her doc is on top of it and not letting it go without investigating. Here's hoping the scan is negative for any tumor, and that it is simply related to meds and that it will resolve with some time.
Kandy, ((((hugs)))).0 -
Kandy, I see that you are a NC girl, too. Welcome to Stage IV. The highest you can go. ;-) I've been visiting the Stage IV forum for about a year and you have already met some of the nice helpful ladies who will encourage you and help you. I hope you aren't in any pain but if you are, make sure your doctors are helping you manage it. You cannot make sound decisions about treatment if you are in pain (or anxious). You are not alone and I hope you can feel the hugs and warm thoughts being sent your way.
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