~* The Waiting Room *~
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My worst fear is the cancer metastizing and I am ever vigilent for ever ache and pain, sure that this is it. After two scares, I have a new plan of action. When my oncologist isn't worried about my complaint I go to my GP. This time it was bursitis in my hip, not mets as I feared. He sent me to a PT and I'm already more comfortable.
I've learned that my oncologist worries about symptoms that may be mets and seemed to blow off my complaints. I realize that she might have suggested I call my GP to have him determine the cause and treat it, but now I know what to do.
I'm hoping that as time goes by my paranoia goes away. Has it for you?
Boo
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Boo, I don't think it ever goes away. I'm almost five years out but recently had five months of scans for suspected bone mets. Thankfully it was'nt, but I was convinced it was!
We just need to learn to relax when no symptoms and report anything that looks suspicious and need to learn to live with this!!!
Tricia xx
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Hi Ladies,
Just thought that I would pop in and let you know that I went for the CT (neck/chest) on Thursday-April 9th. I asked the tech when my RAD-Onc would get the results and she said the next day. Well the next day my RAD-Onc secretary called to let me know that I would be starting my rads on April 19th. So I am sure that the RAD-Onc must have got my CT results but I must have froze with fear because I forgot to ask his secretary if he received the results. She didn't mention anything about him wanting to see me before starting rads. I last saw him on March 30 when I had my consultation and rad-simulation. This is when he advised me that he would be ordering the CT Scan to take a look at my lymph nodes (neck & collarbone) before starting rads. This is when I asked him to make sure that my ribs were included in CT Scan and based on the "questionable" spot and he agreed too. So I still wait...scared...and nervous!
Frankie
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Hi everyone. I just came from my 3rd mammogram since treatment (which was 2 years ago), and I called in sick to work for the afternoon because I'm a wreck with anxiety. The mammogram hurt like hell and though I know it always hurts, it led me into a tailspin of worry and visions of new tumors crowding inside the breast. I felt depressed that I haven't yet "lived life to the fullest" as I vowed to do 2 years ago. I'm just generally waiting for the other shoe to drop. If it's not going to be new breast cancer maybe it will be something else. I also saw a cardiologist this morning to follow up on some non-serious abnormalities but he's recommending I wear a heart monitor for a month to see if the abnormalities are getting worse. Good thing I'm not dating, with only one breast, a bad scar, and a heart monitor to boot!
So it's been one of those days, and its only 2 pm.
Glad to find some company here.
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Everything still crossed for you Frankie!!!!:)
Tricia xx
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I called my Rad's office and left a message for his nurse inquiring about my CT scan results last Thursday. This was yesterday at 4:00 the office closes at 5:00. I have not heard back yet. I have received calls back before telling me previous tests were clear. I am so nervous, surely if it was clear she would have taken a minute out of day to put my mind at ease, wouldn't she?
Frankie0 -
frankie,
We are all here waiting with you....... It's so easy for our thoughts to go spirling out of control. If the anxiety is really getting to you. give them another call and just say ." look....I need to know...NOW." Let us know.
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Frankie,
I have many doctor offices that tell me if a call is after a certain time of day, they won't call back until the next day. Maybe yours might have that same type of policy.
Hugs!
Trish
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Well Ladies things don't look good. I called back to my Rad's office and left another message with his nurse (yesterday) apparently she was not in the office on Wednesday when I left the message nor was she in on Thursday. She did call me back right before the office closed yesterday. This is what she told me the CT Scan results found: The CT Scan only covered my neck to the end of my ribs-so basically my chest area.
1) Nodes (lymphadenopathy) in right supraclavicular fossa region -remain the same (have not decreased or increased) since chemo ***The Rad's purpose of the CT Scan was to re look at the area prior to radiation treatments to determine the dosage and length of radiation treatment for this area.
2) Lesion on the 7th left rib (subtle sclerotic focus) remains the same (upon initial staging CT Scan in November). At that time is was thought that it may be from a healing fracture. so this might be good news because I remember my Onc saying the fracture scar would remain but if it was bone mets we would know if it changed or disappeared -assuming chemo affected it. Okay but heres by mind wondering-what if it is bone mets and the chemo and herceptin not work -arrghhhh!
3) 2 new spots on my T5 & T11 were found to have an uptake.These were NOT-on the original CT Scan nor the bone scan in November. Okay could this be inflammation from chemo or new mets-is the chemo and herception not working???
The nurse told me that #2 & #3 results came back as being VAGUE. WTH??? She said that further investigation is necessary and will be ordering a bone scan now. I was to start my radiation treatments this coming Monday and she told me that this is being put off as they want to complete the bone scan first. I can only imagine what a full body bone scan may find. She is hoping that I can be booked within a week for the bone scan but she said it may take 2 weeks WTH!!! This waiting is horrible plus my radiation treatments are being put off hold.
Could a CT show a false positive due to inflammation from chemo? My CT Scan was done on April 9th and my last Taxol was on March 9th.
Is is likely that I could have progressed during treatments re: bone mets? if so, guess the AC & Taxol treatments were unsuccessful -that's so scary!
If #2 & #3 are found to be bone mets would they still offer my radiation treatments as previously planned from my simulation or would they just write me off now?
Last night I cried so much and my husband was trying to be positive. He told me that I was so negative automatically fearing the worse. Although the nurse said the results were found to be vague I must say it doesn't look good.
Any thoughts???
Have a blessed day!
Frankie
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Frankie - I am so so sorry you have all this upset and uncertainty. Cal, call and call and try to get a bone scan as soon as you can. People must cancel, it is unacceptable that you have to wait two weeks.Can you even try to get one done at a different treatment facility? I remember only having to wait about a week for my initial staging scans.
Try not to get ahead of yourself, it is highly possible that the areas showed uptake because of chemo. And remember, they will never "write you off". Bone mets are very treatable for a long time. Hang tight - keep us updated.
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Frankie,
Your whole ordeal just pees me to a tee. I was hoping that your CT results could give you a peace of mind and you could enjoy your weekend.
I have no idea when it comes to scan findings. I have never asked in detail what mine read. And I like to keep it that way. My initial scans came back "good" so I left things at that. Uptake? Hmmmmm....I'm sure there could be a lot of reasoning behind this. Does chemo cause it? I don't know.
Do the stinking bone scan. Tell your nurse or who ever to rush on it. Like Kerry said, I'm sure they can squeeze you in somewhere.
And the waiting...? <sigh> there is just no easy way around it. It is by far THE wrose thing to go through.
All I can say is try...TRY not to assume the worse. We do though. All the time. Im so paranoid now about every little lump and bump I'm feeling since having my implant put in. I feel everything! It's maddening, and not good mentally. I'm going to be taking a break from cancer world, hopefully for good. I've decided to eliminate anything to do with BC. Since my "scare" , I have seem to have taken 10 steps back from moving on. but I log in to check your update. So, I wait with you. I needed support....you need support.
And, if....IF it was bone mets you will not be written off. Your treatment may change, but you won't be left alone. And yes...woman with bone mets can do well.
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Frankie, even IF bone mets were found it's usually treated sucessfully by radiation if there's any pain so you would'nt be written off!! Also, scans can have a false positive for sure and I think when they used the word Vague...they mean inconclusive so basically the scan did'nt clearly show what this is.
I know it's frustrating as I recently went through months of this here in the waiting room. Mine turned out to be nothing and the suspicious spot completly disappeared by itself lol....that was after a hot spot on the bone scan, inconclusive mri, and followed by another mri two months later to see if it had grown!!
Take heart, these spots could be anything from the past and not cancer. We're here for you and wishing good results and peace of mind:) xx
Tricia
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Hello,
I have been in the "waiting room" for about 3 weeks now, and I have never been so stressed out waiting for results. I had a bilateral mastectomy with reconstruction in Sept 09 after being diagnosed in Dec 08 and having 6 cycles of chemo Feb-June 09. I was scheduled to have my exchange surgery on April 12, this month, but in the beg. of March I noticed a "lump" above my foob on the side where my cancer had started. I had an ultrasound done and my family Dr mentioned something about 4 masses and a biopsy. My oncologist said he wanted me to go for another ultrasound because he was not happy with the imaging. I went to see my plastic surgeon hoping it was the implant, but he said it was not and sent me to a surgical oncologist that day to have it checked out. It was not my usual Dr. -he did a needle aspiration in his office and then I waited until the end of the week to get the results. When I finally did get in touch with someone, I was told that there was not enough information, they need to do a core biopsy. Luckily I had arranged to have the original ultrasound sent to my surgical oncologist who had received it and the results from the needle aspiration. I waited until Monday to get a call asking me to come in the following afternoon. When I went in, I was told that the results came back "suspicious of malignency". I have a very good surgical oncologist and he looked puzzled about everything. I know he is concerned, he is surprised because all of my lymph nodes were negative when I had my lumpectomy and my bilateral mastectomy. He said it could be in my a lymph node in my chest, or a new cancer, or something else that is not cancer, but he has no idea what. He does not think it is scar tissue because it is too far from my last surgery and my plastic surgeon does not think it is fat nucrosis, but he is not ruling it out. I stayed in the area overnight so that I could have a biopsy the next day. When I had the biopsy, the ultrasound showed that the mass was between my muscle and had grown up, it was quite large. My surgical oncologist popped in between surgery and told me they could see something that looks like it may be in the lymph nodes. This was on Wed. I was told that the results would be "rushed" and that I should know tom, but my surgical oncologist was leaving that day -holidays for two weeks. Needless to say, after several phone calls and a lot of crying and frustration, no one called me before the week-end to give me the results. Thank god it is Sunday and hopefully I will get the call tomorrow. I have a 3 year old daughter and a wonderful husband, and I need to know I am going to be ok. Thank you so much for having this type of post for everyone who is waiting. I have been on the internet a lot over the last 3 weeks trying to get answers before I get something from my Doctor because I feel like I have been waiting forever.
Good luck to all of you who are waiting for results, and I am very happy to read the posts that come back B9! Let's hope mine is too.
Kristian
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Kristian,
So...so...sorry about all the waiting and anxiety. But nothing is final yet.
I just had a scare too. You can read some of my posts above.
I had my exchange surgery Jan 28th, after having my tissue expanders in for 22 months. Had a slight infection, did antibiotics for 6 weeks. I left my implant alon! I did not touch it or do an exams. Then one Friday late afternoon....btw.....never, ever do an exam on a Friday afternoon around 4:30pm, I felt a large lump under my skin on the implant. It was just down from my scar.
I freaked. Freaked. Called all my docs....noone was in. AND....it was the Easter long weekend. I went to 2 walk in clinics and the hospital ER to get docs opinions. Finally I got in to see my surgeon and I had an U/S a week later. The doc at the imaging centre came in to the room and told me with was a cyst and B9. B9....my surgeons secretary called me a few days later and read the results to me as well. Just to ease my mind.
My point? There is just so many "things" it could be. We just always go to the worse scenario.
I know what your going through. My daughter is 4. She was just 2 when I was diagnosed. None of this is fair. None.
Update us when you know.
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Thanks Kerry, Lexie and Tricia for you kind words of encouragement. Kerry, I am going to call back to my Rad's office today and speak to the nurse again. When I spoke to her on Friday I did ask if I could have my bone scan where I live (as it seems to be quicker to get it done here than in Hamilton at Henderson or McMaster) she said that they wanted to have it done there at my cancer center. I feel it is unacceptable to wait up to 2 weeks. I am freaking out with all this waiting. I think it will be time for ativan soon to help me cope for awhile. I spent a lot of time crying with my husband this past weekend. I will continue to update...
Kristian-This all sucks!!! I am wishing things are B9 for you and that you will have a ANSWER soon TODAY.
Frankie
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Just heard from the Hospital and my bone scan will be on Monday, April 26th at 2:00. It's horrible that I have to wait 1 week as I just want to get this over with. I will update once results are in.
Frankie
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Well, at least you have a date now. Try and just put it out of your mind as best you can until then. (easier said than done, though huh!) At least then you will know more of what is going on.
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Okay ladies, I'm joining this thread. I recognize quite a few names here! I'm going tomorrow for my TAH/BSO. On a routine ultrasound (ordered by my regular ob-gyn to help me in the decision of whether to do tamox or lupron + AI) they found a complex cyst that had some suspicious qualities. The gyn-onc does not think it is highly indicative of ovarian cancer (nor breast cancer mets) but originally, they didn't think my breast lump was anything either. . .(sigh). . . So tomorrow I'll have the surgery with the gyn-onc present in case there is any suspicion of malignancy once they take a look around laparoscopically. If nothing looks out of the ordinary, they will stick with laparoscopic removal. I'm just really nervous, but I know all of you understand.
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Hey Everyone,
I so wish I heard the word B9 today, but unfortunately it was the other word. I don't know what I have yet, whether it is a recurrence or a new cancer. I was so happy with my new foobs, and now this. I have one little girl that needs her mommy, so this is not going to happen without a fight. Thanks for your kind words. Please send some positive energy, hugs, love, prayers, anything my way.
Take Care
Kristian
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Kristian,
I am so sorry to hear your results. This isn't the end of the fight so get ready for battle. My prayers are soooo with you. This makes me so sad.
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Gosh, I've been wanting to post to everyone, but everytime I try to my phone rings.....ANNOYING!
Frankie, I just wanted to say to you that my onc told me not to have any gyn check done while on chemo. For one thing, didn't want to "introduce" any germs while on chemo. Plus he said it may show up abnormal. The other thing I wanted to mention.....I had a CT and bone scan scheduled for the same day. First was the CT scan. It said, highly suspicious for bone met....follow up with bone scan. The bone scan said, concerning for bone mets. My onc suggested we wait for three months and then do another CT scan. After getting home and re-reading my reports and talking to my dds, I decided on a biopsy. So, it probably is a very good idea that you do have the bone scan. I'm just sorry you have to wait. I think I waited about one week.
lexislove, so glad to hear everything turned out well for you. I could feel the panic in your posts.Waiting is horrible!
Kristian, hang in there. I didn't get the B9 answer either. But once you know what you are dealing with, it gets easier. And that little girl and dh will give you the reason to fight like hell.
weety911, praying for B9. Please let us know what you find out.
Trisha, you're a saint for sticking in here and "cheering" on very frightened gals. Sharing your "bad" experience that turned out "great" is a help for these women. Many of them find out that they too are fine.
I know I've missed a bunch. I'm on the last page and can't go back to check without losing my post. Positive thoughts and prayers for everyone.
Shirley
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Kristin, I'm so sorry you did'nt get the all clear you hoped for, but wait until you get the full details before panicking as it's still do able and we're here to help you:) Please keep us posted!!!
Weety, huge hugs and positive thoughts with you.. I know the waiting is awful, been there too but it has to be done and hopefully we get good news at the end!!!
Frankie I have everything crossed for you bone scan, mine was positive but it still turned out to be not cancer so hang in there:)
Shirley, thanks and good to see you here again!! I know what the waiting was like and was fortunate to have you, and many others sit with me and hold my hand lol....I did'nt forget so am happy to try to pay it back to others waiting too:)
Tricia xx
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So, I guess I will join the waiting room! Sucks! Hopefully I can get a biopsy on my lump on Tuesday (I'm even going to try for Monday). I can't believe this is happening to me. A week ago I was freaking out about having to go through surgical menopause with a ooph/hyst. Now, I'm being thrown back into this test and wait thing on my breast again. CRAP!
I hope everyone waiting gets good news!
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My hysterectomy/oopherectomy is done, and the cyst is a BENIGN cystadenomafibroma. Gee, I'm soooo relieved I'm not dealing with a 2nd cancer! I'm praying for everyone else here still waiting. . .
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weety - I'm so glad to hear the good news!! How did you feel after having the hyst/ooph. I'm supposed to have that done next month. I guess it all depends on my outcome of the breast lump.
I'm still mad that I have a breast lump, when I don't even have breasts anymore!!!!! Oh well, we will find out more next week! Take care everyone!!
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Weety, thats wonderful news and I'm so pleased for you!!!!:)
Kittycat, sending good wishes for benign results to you:) I had just the ooph rather than the hyst as well and it was the easiest surgery I ever had and recovery was very quick:)
Good luck and keep us posted!!!
Love
Tricia xx
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kittycat,
I was already in a chemo-induced menopause, so I haven't felt much different since the hyster/oopherectomy. I'm having terrible hot flashes, but I've been having them ever since I started on the chemo in Aug-09. I guess the side effects are more tolerable, (or at least accepted) when you know you don't have any other option. . .I feel like I totally know the meaning now of "grin and bear it!" Once you find out more and if you want more info, don't hesitate to pm me! I'll check back to see how your biopsy goes. Waiting is no fun at all.
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HI, All~
Definately not where I want to be, but here I am, and I hope I'm not taking up too much room on the couch! I had my mammogram on my remaining breast the last week of March. I made the appointment for my surgeon the week later, as I was told to, but that ran into Easter, and got postponed until last week.
Anyway, I never got anything from the imaging center, so I figrued that all was good. When I saw my surgeon last week, at first he asks if I got my mammo. Then he corrected himself, then asks then nurse to get the report from his desk. He's chatting away, and says everything is fine, takes the report, and says, "Excuse me...I need to check on this." and leaves the room. Do you need to know how that felt???
He comes back and makes the statement, "Let me explain this to you like this; when you see a bird flying at you, you know what it is." Ok, so I have a bird in my boob??? My dh and I just look at this man like he suddenly sprouted two heads. Then he tells me that there is a density on one of the films, no calcifications, about 7mm, but not showing up on the other two films. The radiologist recommends that I come in for a follow up in 6 months. I simply said ok. I guess he wasn't satisfied that I didn't burst into song, or slap a stupid grin on my face, because then he proceeds to tell me that he knows I will not stop worrying.....won't eat....won't sleep, and has ordered a MRI.
I get to set it up. I get to find a place to have it done. I get to negotiate how to make payments because I haven't met my deductable. No help from this guy who at one time I thought was pretty great. He left off ONE tiny bit of information that the radiologist said in his report. That it is PROBABLY BENIGN. Now, if he had told me that, he may have gotten the stupid grin, at least.
Anyway, I finally get my letter from the imaging center with generally the same info AFTER the trip to the surgeon. THEN, as I call my pcp, she does not have the report. I call my onc., and SHE doesn't have it either. Ok, I'll fax it to them, but since we are all supposed to be on the same team, shouldn't they have gotten a copy of the report from --- oh, I don't know....maybe the center? They have all the contact info. GEEZ.
So, even though I'm 90% sure I'm ok, I still have my fears, as we all do....plus mad as all get out.
I've been told that it may be just a fold of skin, or I moved, or a cyst. Or it could be......
Anyway, just airing out my brain, and asking for thoughts here. Anyone??
Jennifer.0 -
Kristian - I'm sorry about your not so good news. Did you do rads for your initial treatment? Remember, a local recurrence is highly treatable. Thats the good news out of all this.
Frankie - Thinkin of you...hope you can put some of the anxiety on hold and enjoy your weekend
Weety - Yeahhh....for the B9 results! I got a called from my gyn while I was sitting on a slot machine in Vegas asking if I would want to do my ooph on June 3rd instead of July 22nd. Ummm...yeah. These ovaries can't come out faster.
Jenniferz/KittyKat - Hoping you both get your answers fast.
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Jenniferz - I hope you get a good answer fast!
lexislove - I'm hoping this whole thing is just a scare and is reassurance that I need to get my ovaries out FAST!!! Gosh - only to be a week ago and complaining about going into menopause. It's amazing how this horrible disease puts things in perspective!!!
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