~* The Waiting Room *~
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Hi Tricia
I was just wondering what your MRI report said. Did you get a copy? I wish I could get a biopsy too. I'm sure it probably hurts quite a bit, but just for a little bit. Then at least you'll have an answer either way. Thanks everyone for your support. Keeping good thoughts for us all here in "The Waiting Room"
Kendy
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Littleflower and Donalee, I too, have been having hip pain since July. I had a hip replacement scheduled for the other day. I cancelled it at the urging of my PCP. she is not convinced that is what I need. She flet I had a labral tear. She sent me to another orthopedic and he feels the same way..labral tear. Tomorrrow I go for 3 phase whole body scan ..he wants to rule out mets...tho he doesn't believe we will find any. Also, next week for an arthrogram. then we will see what's up. The surgeon who was supposed to do it had done an MRI and my PCP had done xrays and CT scan. Minimal arthritis is what they found...hip looked ok. But the surgeon said sometimes when they get in there it is worse than what it is. So....another opinion is a good thing and I should've done it from the beginning. So I wait with all of you. Every now and then I have to come in here...but I dont' mind keeping you guys company too.
Tricia, I ampraying for your niece....terrible,cancer in a child!!!
hugs and prayers
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Lori thats wonderful news and I'm so happy for you:) Cancer in the breast can be handled so the main thing is to be clear elsewhere!!!!
Kendy, I did'nt get a copy as yet but basically the very small area of concern that showed ont he bone (thoraic region) also showed on the mri but it was inconclusive so they really could'nt say what it was for sure. The radiologist wanted more testing so hence the pet/ct which was negative. My onc said when discussing my case with him he felt the biopsy would be a good idea as we just can't take a chance with this disease and especially as I'm highly her2+.I just saw on another thread you were due to see your onc on Dec 9th, how did that go??
I forgot to ask but think I'll be knocked out for it as they're bringing me into hospital the day before the procedure.
Have you requested a bone biopsy? It is quite invasive and I would'nt be doing it were it not for the fact of the dodgy scans:)
Candie, thanks for your kind thoughts on my niece:)
Tricia xx
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OMG, OMG, OMG, I'm in such a panic, my hands are shaking so much, I can barely type. I think the cancer is back, and I'm not ready for this. Please, someone talk me down from the precipice.
I was treated for bronchitis in October, but have continued to cough and become short of breath while speaking. The pcp did a chest x-ray to rule out pneumonia, all clear except for a small granuloma overlying the lung. (granulomas are benign "scar" tissue left over from an infection.) The cough persisted, so the pcp sent me to a pulmonologist last Friday. She prescribed a steroid inhaler along with the other 2 scripts from the first doc. Also, she said I should have a cat scan of the chest "just incase".
So today I had the catscan at 11am, and by 1:15 the doc called with some very disturbing news. They found 2 lesions 1.3 cm and 1.4 cm on the right lung (bc was left side); some spots or "changes" on the thoracic spine; fluid around the heart.
They scheduled me for an mri of the spine and an echo-cardiogram tomorrow, and a pet scan sometime next week (I think). The doc said they'll probably want to do a biopsy of the lung and the good news is that the lesions are near the periphery, so it won't be as invasive as it could have been.
I am scared to death that it's cancer, thats actually funny, scared To Death, more like run out of air to my lungs To Death. Does anyone survive mets to the lungs for any length of time? What is treatment like?
Please help!!
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Kalyla, I'm so sorry you're waiting for these tests and so worried, I also am waiting and will have a bone biopsy in Jan.
I have no personal experience of what you're going through, but the way I feel is that I can't change what it is and will have to cope if needs be. Hopefully in both our cases our results will be good, but if not there are many meds and women live for years as stage iv nowadays!
If you check out the stage iv forum you'll see what I mean and while none of us wants to get there, if it happens we need to be focused in order to make good and right treatment decisions.
I'll be hoping for benign results for you as I'm sure we all will that are here stuck in the waiting room!
(((hugs)))
Tricia xx
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Kalyla - I'm so sorry for what your going through..........and I'll be praying that your tests come back all normal.I have a spot on my lung and a large cyst on my liver, but they haven't changed in size since they were first seen last year, and I have no symptoms so I'm assuming all's well. I also show evidence of a small pericardial effusion, but the cardiologist reassured me it's nothing unusual. You've been through so much already - it's not fair - how much can one person go through? I hope some more ladies will respond..........but if not, think about starting a brand-new thread for yourself to get more reponses from women who've been through the same fears. Hang in there - I'll be praying - let us know what the doctors say! Remember - nothing is certain yet - try not think the worst until you absolutely have to - easier said than done, I know!
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Kayla- I am so sorry and am praying for a benign result for you. Worst case scnario....yes, people do have long-term survival with lung mets. Check out the stage IV boards, as Tricia mentioned. Post something there and they can tell you great stories. I know a woman diagnosed with stage IV IBC, which very aggressive, and diffuse lung mets, and she is doing great 5 years later.
Tricia- hope your biopsy is smooth sailing and benign.
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Kayla
My prayers are with you tonight, rest assured so many have been this route before you scared beyond belief and sometimes it is cancer sometimes not. If it is you will go the way of the brave sisters here before you and know that the stage 4 is not what it was once, the treatments are wonderful and there are many.
I pray that God's healing light is with you now.
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Thank you for your kind words. I'm still in the waiting game though. The MRI was cancelled because the pre-authorization from my insurance company hadn't come through, ugh. However, I did have the echocariogram and also met with a cardiac disease specialist who said I had a moderate amount of fluid surrounding my heart. It could be from an infection, or damage from chemo and radiation, or (GET THIS, THE DOC ACUTALLY SAID THE FOLLOWING) "It could be cancer cells floating around from your metastic cancer in the lungs." What???
I replied "Hey, we don't know that it's cancer yet!"
Monday, I'll meet with another cardiac doc who will schedule a proceedure that will drain the fluid from around the heart and test it for infection, cancer, etc.. Right now, I feel this is the most important thing to do, since I cannot complete a sentence without running out of breath or coughing, and I have been feeling pressure around the heart area every time I move, cough, lie down, get up, get into or out of a car, etc.. I told this to the doc and asked if I should be doing anything special or not, and he had no answer except to say, make the appt with the cardiac surgeon... ugh.
Suddenly my life is filled with appointments again.
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Kayla
your immediate comfort is MOST IMPORTANT, please push these docs YOU ARE IN CHARGE to get you in and take of your discomfort and then onward to determine cause. There is no reason you should have to sit around and wait to feel better.
I continue to pray for you tonight and pray that you have all the comfort and support that you need.
Peace
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Oh my goodness. So much going on.
Kayla, it's absolutely normal to be fearful. Have you asked your doc for an anxiety drug while going through these tests? There are many women, as you have already been told, that have gone through these tests and they give us a great report...BENIGN! And, as has been said here already, if it is cancer you WILL deal with it. Somehow that just happens...believe me, I know. I never wanted to play this wating game either. I never had or wanted scans after treatment to check for mets. I'm one that likes to be in denial. LOL And, I'm still there. It's much more fun that way and it's the way I deal with it.
I'll be praying that your tests all return negative.
Big hugs to you,
Shirley
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Tricia, I'm sorry to hear about you having to have a biopsy. If you remember, I choose to go that route with that spot on my vertebra. Mine was L1..right above the T12. One scan (CT or bone) said L1 and the other one T12..the wording..concerning for mets or highly suspicious.
My experience with the biopsy was not horrible. It was a CT needled guided biopsy. They gave me Versed (like valium) and Fetanyl (for pain) via IV. It did not knock me out because I never get knocked out with those drugs. I had a colonoscopy and was wide awake and watched it and the same drugs were probably used. I only felt a little pain and I told them because I wanted to make sure it was normal. Didn't want them to stick the needle in the wrong place..LOL I had Radioneurologists do my biopsy and it was out patient. The worse part was WAITING for TWO hours before they'd let me out of recovery. I was fine and awake. But, gotta make sure there's no bleeding.
Sounds like you will be knocked out if you have to spend the night. Good for you. However, when they started the meds I was fine...no anxiety..very relaxed. As long as I'm not freaking out I'm find.
I'll be waiting to hear your results. I KNOW it's going to be NED!
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Shirley thanks so much for giving me your personal experience of this. I also am having a ct guided biopsy for the one spot. I really don't know the wording that was used or if it said concerning for mets etc but assume they would'nt be sending me for this unless there was a strong possibility.
Well, it is what it is, and I'm dreading getting bad news but do need to know for sure.
It won't be until sometime in Jan anyway as my onc was'nt sure how fast she could arrange it due to the Christmas holidays.
I had the bone scan in Sept and concerned at the time length all these scans/results are taking, just hoping it has'nt spread more!!!
Kayla, you'll be in my thoughts and prayers too and how awful that Dr used those words to you before the diagnosis was definate or your onc could explain it to you. Try to remain positive as I also am trying to do and know you'll deal with it should it happen. (((hugs)))
Tricia x
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Hi Ladies
Have been following this thread for a long time and I have noticed many with aches in their backs and hips. I had severe hip issues for months last Feb had 3 scans....nothing I know I have discussed with Candie before and attributed to the Arimidex. The hip pain went away after 3 months now back and associate it again with being back on hormonals.
But recently I have been dealing with a a bad back ache upper right shoulder area it is not a pain but like an ache or pinched nerve feeling that radiates towards shoulder.
I hate to repeat scans again, wondered what your back pain felt like and it seems many times to come back NOT mets.
Need help to get through the holidays before going the scan route again. Although looks like I will have bone scan next week. It is always so hard to believe it could be something else other than mets. I have recently started Zoladex injections and I lift weights.
What does mets feel like in the back?
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Just wanted to update. I had my bone scan for the hip pain. They called this morning and said it was completely normal. I guess it's either bursitis, arthritis or, I heard you can get hip pain from low estrogen? I'm just glad it was not mets and now I know for sure.
Hate to see this thread so busy. I wish everyone well with your tests!
Happy Holidays
Donalee
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Donalee thats wonderful news and thanks for the update!!! Now you can relax and have a wonderful Christmas:)
Just wanted to give a quick update on my upcoming biopsy , I heard from my onc earlier and it appears the spot of concern is too small to biopsy. They want me to have another MRI at the end of January to see if it has grown or changed by then and we'll go from there. So, still in limbo for another while but glad not to be facing the biopsy just yet!
MMM5, My back pain is more an ache, similar to what you may get if on your feet all day or after you've done a pile of ironing! I don't need to take meds for it as it has'nt been that bad really and although an area of concern has shown on the right side of the thoraic, I feel the pain on the left too.
Strangely when I had gall stones (a year before breastcancer) I had pain around my shoulder blades and back! I really would'nt have thought of this, so there are other reasons other than mets for this!! You may also have pulled a muscle or have some arthritis? either way I hope it's nothing and clears up soon:)
Tricia x
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Donallee
Exact same thing happened to me last year with hip and had MRI .....clean! I did an experiment I went off AI's and pain went away 6 weeks after AI's started taking ZOladex and pain came back.
No estrogen is very hard on a body, especially if you are premenopausal.
How old are you when you stared tx? your dx is close to mine, wondered what hormonal protocol you are following.?
Thanks so much for your reply TriciaK....good luck with bone biopsy. will most likely prove to be nothing sinch your PET was clear.
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Tricia, SOOOOOOOOOOOO glad to hear you're not having the biopsy..not that it was all that bad, but just because. LOL And, if the spot doesn't change in size that's a wonderful sign that it is not mets. I had spots on my liver and adrenal gland at time of diagnosis. I had the PET/CT scan and it was not chancer. After having my CT scan this last time, the spots were still there bu had not changed one bit. I'll keep everything crossed until you get your MRI..gosh it's hard keeping those eyes crossed!
Donalee, wonderful news! Like Tricia said...enjoy Christmas..no worries.
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mmm5, I had not pain in my back. I still don't (knock on wood). My onc was not concerned that it was cancer. We were going to wait and do another CT scan instead of the biopsy. However, I changed my mind and wanted the biopsy. She said it was unusual to not have pain and it only be in one spot. However, I have seen other women like me here on this board. Perhaps it's unusual to catch it with only once spot.
In my lower back I do have a degenerative disc. It bothers me when I do too much. It goes down my buttocks and if it gets really bothersome it will go down my leg a little.
Good luck on your bone scan.
Shirley
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Thanks Shirley, I know none of these procedures are pleasant but one of those things we must endure at times! I've mixed feelings as although glad not to face the biopsy right after Christmas, I am left stuck in the waiting room for longer lol...guess you'll all have to listen to me moan another while:)
It's odd as although I get an odd twinge where this spot is, I have more pain elsewhere around my back than there but they're adamant there is only one spot.
Maybe I should start taking bets and liven things up lol...
Tricia x
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mmm5,
I was 45 when diagnosed, pre-menopausal. My periods stopped when I started chemo in June of 08. I still have no sign of any. I've been on Tamox since Nov. of 2008.
Tricia,
Whine all you want! We're here for you!!
Donalee
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Well, it's confirmed, I have mets to the lungs and bones. The pet scan lit up on the spine, several ribs, lungs and somewhere near my original mastectomy sight, under the arm, almost near the back. My oncologist still wasn't definitively willing to diagnose mets and so he ordered some biopsies. He had done the ca something or other turmor marker test, but he didn't have the results yet, so while we were still at the counter, scheduling the biopsies, he came by and pulled me into a room again and said the blood test just came in and the numbers were so high that it was irrefutable that I indeed had cancer, ugh.
Today, I went to the hospital and had a port put in, 1,400 cc (thats 47 oz.) of fluid drained from outside my right lung, and 2 needle biopsies under my left arm. Right now, the biopsy sites feel fine, but the port area is killing me. Time for more advil.
I've told most of my family and a few friends, but it's my dh I'm worried about, I don't think he's taking this Stage VI thing very well, very angry at the weirdest things, like heavy traffic, lines at the stores, politics, etc, I think he's displacing his anger, but it's very hard to live with on top of feeling not well.
Well, I guess I'd better go introduce myself to the stage VI forums.....
I truely hope you all have a merry Christmas.
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Oh Kalyla, I'm so very sorry. You've been given the news we all dread to hear and I feel for you most sincerly.
I know the stage iv ladies will be a tower of strength for you from here, but can honestly relate to how you feel as I may well be in the same boat shortly.
Please keep us posted and worry about you right now rather than hubby, he'll come around I'm sure.
You've been given shocking news and I know it'll take time to sink in.
I really am so very sorry to hear this
Tricia xx
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Thanks Ladies for your imput! I am having a thoracic MRI on Monday...could use your positve thoughts and prayers!
I am praying for estrogen deprivation, as that is what it was for hips..pain in upper back comes and go's but does not get much better.
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Kayla,
I'm so sorry you got bad news! Sounds like they're moving fast to start a treatment plan. That's a good thing. It will take time I'me sure for this to sink in to everyone in your family, including yourself. We're all pulling for you. Stay strong.
Hugs!!!!
Donalee
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Mmm5, we'll be thinking of you and praying for good results Monday. This is exactly the area they are watching with me too but so far I have no answers despite a clear pet/ct.
Good luck and keep us posted:)
Tricia xx
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Kayla I am so very sorry to hear this bad news! Your husband's reaction is somewhat typical (from what I've read) but that's no help to you - you need his support right now. I do hope you'll be breathing better now they drained all that fluid - and that the pain from the port will end soon. You've been through so much already - I'm sure the Stage IV women will be a source of inspiration and strength to you. I'll be praying that you stay strong!
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Thanks Swimangel, I'm glad you're here for me. Everything is up in the air until I see the onc. tomorrow, then I'll know the plan for chemo etc. and hopefully my panic will subside. The breathing is only somewhat better, They may have to drain the fluid from around the heart, too. But how do they keep it from filling up again?
mmm5, good luck on Monday, I hope all goes well.
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Kalya
I am just so sorry you are going through this, but know that you are being prayed for as I write this. I can't imagine your fear especially with the breathing, but I want you to know that I have heard of many ladies with lung mets do just fine for a long time. I see you are er positive and wondered if you have had ovaries out and an AI as I know that has helped many for years.
We will be praying for a successful and comforting meeting with your ONC.
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Kayla, I am so sorry you are going through all of this, and I hope you get some answers and a good appointment with your oncologist. Praying for you.
mmm5, good luck with your MRI today. I hope you get good news.
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