bone scan
Comments
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I haven't been told what stage my cancer is yet, i was diagnosed on December 13th, and just went back on the 4th of this month to be told by my general surgeon that they are going to perform a mastectomy, anyways they sent me for x-rays, cat scan, blood work, go for a colonscopy on the 14th, to be havinga total mastectomy on my right breast, i assume it has to be stage 3 or 4, about 20 minutes ago my Dr. called me to tell me that there was a suspicious spot on my spine and wants to do a bone scan, i'm sitting here crying and not really understanding it all, i am 39,married with 3 girls, any advice would help, even if it is not good, i just want to be prepared. Thank you
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Did you have a biopsy already or not? Seems odd all he said was a mastectomy was needed and nothing more? If you had one, did he explain the results of it's tests? You really need that to make an educated decision about your situation. Don't just follow through with him, but maybe get a second opinion if he won't educate you more about your situation. You need that information, ask for it. Are you close enough to get a copy of it?
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Yes, i did have a biopsy, i've had a lump on my right breast for about 3 years, never going to get checked, now i'm just blaming myself for what is happening, i went for a pap, from there they sent me to a facility in Galveston, by the way i'm from Texas, there they did mammogram, ultrasound, biopsy, all in one day, so when i went back, they gave me the results, telling me they didn't find the cancer in the lump, but in two other tumors under my arm and a lymph node they tested. I'm a very sensitive person, a cry-baby, lol, so when they told me, i was very emotional, not really taking in what they were telling me, i kinda of understand, but their not really telling me if that means it has spread, iguess they won't know until they do the bone scan.
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First of all...I am so sorry you have to deal with this. I think you should get a copy of the biopsy report. Did they tell you it was ILC? Once you have the report you may feel better knowing exactly what your diagnosis is. If you want, let us know what the report says and we'll help you understand it all.
Don't assume it's stage 3 or 4 - I had a Mast and I am stage 2B and the cancer spread to my Sentinal Node. A "suspicious spot" doesn't mean it's cancer. Hang in there...we'll help you through this. And you'll be surprised how much better you will feel when you understand it all and when you have a plan of attack prepared.
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Thanks so much for your words. Like i said i don't understand very much at this point, but i will keep you all posted!
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CandyL-
As others have said hang in there. I had a very scary time during my staging tests- all that uncertainty was the worst thing I've ever been though but I got through it. Can you get more info from your doctor about what he is thinking? I had a total meltdown after my bone scan because the tech came back and said I needed x-rays because multiple areas of my spine "lit up" this was on the Friday of a holiday weekend and I couldn't get results because my MD wasn't in till Tues. Anyhow- turned out to be arthritis and DJD- not mets. But I went through hell and I really empathize with what you are going through. Just know that there are things other than mets that can look "suspicious" on a scan. Also know that even for women who do have bone mets there's treatment out there that can keep people well and enjoying life for a long time. Great that you are reaching out here and not going it alone. Anti-anxiety medicine doesn't hurt either. Stay in touch and keep us posted. There is so much support here. I will be thinking of you and wishing you the best today. Allyson
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i agree with all that have written ..this is the worst part of finding out exactly what needs to happen next. the wait is agonizing. but trust us..we have all been through it and some of us more than once. you do have time ..so no need to get into panic mode...get a surgeon that specializes in breast cancer . find a comprehensive cancer center and seek information until you know it inside and out! you will take away your fear by the power of knowledge!
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I read your post, Candy, and the comments and it seems like you need to really take a deep breath and then go to the doctor with a friend and ask the doctor to explain everything to you. I know the ladies can suggest a simple list of questions to ask if you are interested in a list. Amidst all this you are having a colonopscopy???? I never know how to spell that, yet I had a routine one (not connected to breast cancer) and it was not anywhere as near bad as I worried it would be.
Allyson, your experience about the bone scan scare is so terrible. However did you get through that weekend. It just seems there should be some counseling involved when we get these scans/tests to reassure us that the news may very well not be bad and maybe some ways to cope during the waiting period.
Stay connected, Candy!
Susccarn
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Hi everyone, went today for my colonoscopy and it was perfect, thank god, the reason i had one done, is my sister who is 42 had colon cancer last year and she is doing great, plus 3 of my moms sibling had it, so i guess they wanted to make sure i was okay. Got one out of the way, now on the 22nd, i go for my bone scan and my first visit with my oncologist. I will keep all posted and when i know more will let you all know so you can kind of explain things better for those who have been through it already. god bless you all
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That's great news CandyLuna! Let's keep it coming!
Tender -
GREAT NEWS! Whew...try to remain positive. Keep us posted...we'll help you through this chapter!
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Candy- so glad the colonoscopy turned out fine. Sorry that you have to wait so long for the bone scan. If I were queen of the universe these things would happen a lot faster and we could skip all this suspense. Please keep in touch here- even if it's to check in while you're waiting to have the scan. Let us know how we can help in any way. Allyson
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Thanks allysonw, i see under some of the posts, some things in light blue, what does all that mean? Just wondering!
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Thanks to all!!!!!!!!!! for comments.
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Candy-
The bit in light blue is specific information about that person's breast cancer- the stuff you are waiting to hear about. My breast cancer was (hopefully past tense) an invasive lobular carinoma (ILC for short- check the community groups and I think you will see the full name and abbreviations for different diagnoses), next is the tumor size, next is the grade (the aggressiveness basically), next is the node status (in my case the cancer had spread to six out of 17 of my lymph nodes. ER and PR refer to whether the cancer has estrogen and progesterone receptors (+ is good because it means the cancer can be treated hormonally in addition to chemo and radiation), HER2 is another indicator of...aggressiveness- I am not so clear about this piece since my cancer was HER2 negative so I haven't studied up.
There is a place in your profile area where you can put this info in (if you want to) once you have it. I include it because being diagnosed with stage III (aka "locally advanced") breast cancer is a little different than being diagnosed with early stage bc- mainly it's more stressful- and I like to connect sometimes with other women who are dealing with the same thing. You can also add a little motto or quote you like at the bottom of each message. I might do this today actually. Found one that I like in a book I bought the other day. Allyson
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Hi Candy!
I was 38 with 3 boys when I was diagnosed nearly 2 years ago. Things went very quickly for me; I had mets right from the start. I don't want that to scare you, though...I had been to doctors for many years and they were not listening to me. It is not very common to be diagnosed with bc this young and it is very rare to have mets from the start.
I hate that you are having to wait so long for your staging. I do want to assure you that bone scans show all sorts of things-not just mets. Having additional views of a suspected area can help the radiologist determine the true reason for something "lighting up". Old (even forgotten!) injuries, arthritis, etc. can and will show on a bone scan.
I echo the advice to take someone with you to appointments, write down your questions (and the answers you get), and even take along a tape recorder so you can re-play things later to make sure you understand. There are so many of us that do that; I don't think your doctor would have a problem with it.
I am glad your colonoscopy went well. Here's hoping that the rest of your testing goes just as well!
(((HUGS)))
Diane -
Thanks Diane, not trying to pry, but how are you doing now? I'm really terrified of the treatments, two things my general surgeon did tell me, were for sure a mastectomy and for sure chemotherapy, a maybe radiation, but like i said i haven't talked to her since January 4th, been doing all other tests first. When I go Tuesday, i don't think i will see her either on that day. I think shes waiting for all the results. But i will keep you all posted. And thanks all for caring! This is a wonderful website. God Bless All!
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I have just come back from having a bone scan (staging test). On Jan 14/08, I was diagnosed with invasive ductal carcinoma - large 4 cm. tumour in breast and smaller unconfirmed but questional one that is said to have "architectural disortions" (biopsy confirmed). Re the bone scan test, two areas, left ankle and knee needed additional scanning. At this point, I was convinced that the cancer had gone into my bones and was quite upset (emotions are raw these days). However, I immediately got on the internet, found this website and the first comment I read was CandyL's. She described beautifully her state and mine! I empathize with her. I was so relieved to read AllysonW's comment (and others) re mets and the mention of arthritis as a possible cause for the scanning "lites". I agree, there should be someone there to explain those anxiety-causing incidents. Then, you wouldn't have additional worry and concern while waiting for results and grade levels of cancer. Heartfelt thanks to all. I think this site is fantastic. My Report day is Thursday Jan 24...Thank you.
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My oncologist practically laughed at me when I showed up for my first visit with an x-ray of my knee (which had been a big problem and extensively worked up). Evidently BC mets do not generally (or ever??? others help me here please) go to areas in the extremities like knees, feet, hands etc. Mets seem to like areas near the torso- too lazy to travel or something. Hope this increases your peace of mind quotient for the day- I'm no oncologist but this is what I've been told. Allyson
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Margaret - I hope your scan went well. Good luck on Thursday...Report Day. Let us know how you are doing...
candy - Best wishes to you too! Hope everything went well today with your appt...keep us posted.
Both of you...hang in there!
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Hi all, haven't gotten results yet on bone scan, but will let you all know when i know something. I did read on one of my papers yesterday as i was waiting to do bone scan, it said "advanced breast cancer" and the word mestasis or something like that was also written. Don't know when i will be talking to my doctor, so i'm just waiting to hear something. I also have psorasis and of course the outbreaks have been really bad since my diagnosis, of course stress is the main factor. Yesterday I saw a dermatologist and was finally given medications, now that I have medicaid, i can finally treat it! I tell my family, "you have to be dying for them to give you some kind of financial help" LOL Anyways, hope all are doing ok and will keep posted. Love Candy
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Well looks like the mass on my spine is cancer, pain i have been having on my leg is caused my tumor hitting on my nerves. Also found another suspicious spot on my skull, but dr. said we aren't going to worry about that right now, so for now we are putting off the mastectomy and starting atleast 12 days of radiation as soon as next week. Dr. says if mass on skull gets smaller as we do radiation than it probably has spread to that part also. I am a total mess right now blaming myself for not have checking that damn lump on breast 3 years ago when i noticed it. I know its too late, but I wish other women would go check as soon as they notice something that isn't normal. So much for fighting and surviving this damn disease, i feel like there is no hope and the thought about me leaving my kids is the worst. I think who can care for them like me, who is going to be there if not there own mother. I just talked to my Dr. this morning, so maybe as the days go by, i can handle it better, but for the moment i am just sitting here crying, reading everyone's e-mails they have sent me, thinking about my husband and kids and all this is such a big mess, my family has to drive atleast 2 and a half hours every day to my appts. and then back, they will be taking turns of course, but all work and i know its going to be a big strain for everyone! Hugs to all who have survived this awful disease and I hope 3 years from now i will still be posting on this website. Does anyone know when this website started?
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Candy,
Don't give up hope, every breast cancer is different!
Because of it's location on the spine and your pain, it's important to get that treated with the rads.
During this time, all types of plans will be made by your oncology staff for upcoming treatment based on their best judgement.
Breast cancer is usually very susceptible to chemotherapy or hormone therapy and lots of new treatments in metastatic patients.
Don't beat yourself up over what's done; that takes energy you'll need for you and your family to seize the moment and get treating.
Please come and post often. We're here behind you 100%.
Wishing you and yours great strength as you work together,
Tender -
Candy,
sending you positive thoughts and prayers.
Hang in there, you start treatment, these cells will be attacked big time!!!
You can do it!
God Bless
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Candy, I'm really sorry to hear about the bone mets. There are many long term survivors of bone mets out there, though, so don't give up hope. I'm your age with two kids, so I can sympathize.
What grade is your ILC? If it's grade 1 or 2, the mets won't be growing that fast. You're probably ER/PR positive, as most ILC tumors are, and you may be able to control the mets with hormone treatment before moving on to chemo.
Where are you being treated? As you are already in TX, I'd suggest getting a consult at MD Anderson with Dr. Cristofallini. He's the top ILC expert in the country (also heads up their IBC clinic). We have a gal in our chemo group from the boards who's there right now getting a work-up/second opinion with him, and she's receiving excellent care.
There are a lot of options out there for treatment. My mom is Stage IV IDC with a very aggressive grade 3 HER2 positive tumor, so she's been through pretty much everything out there. Feel free to PM me.
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Candy Keep your chin up there is a lot of things they can do for bone mets. I have had it for 8 months was dx with breast cancer and bone mets at the same time. I am on Zometa I get that every 4 weeks. Doing well with it. So far bone mets are stable.
Keep a Positive attitude.
Hugs for you and your girls.
Feeval -
Candy Keep your chin up there is a lot of things they can do for bone mets. I have had it for 8 months was dx with breast cancer and bone mets at the same time. I am on Zometa I get that every 4 weeks. Doing well with it. So far bone mets are stable.
Keep a Positive attitude.
Hugs for you and your girls.
Feeval -
Nash, i am being treated at Utmb in Galveston, Texas. I know this might sound dumb, but what is ILC? They didn't find any other spots on my bones, just this one mass on spine, so i don't really think its bone cancer, but really don't understand it all so it might be, does anyone know is radiation stronger than chemo? And why am i doing radiation first? My Dr. is going to call tomorrow to schedule appts. with oncologist and radiologist. Thanks to all who post and care! Hugs to all!
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Oh Candy - I'm so sorry, but like the girls before me have said...there is a lot that can be done for you. There's many girls here who are going through the same and who have gone through the same. We'll help you along the way.
It may help for you to have copies of your diagnosis reports. The stats that are listed below tell alot about the type of breast cancer you have. The girls here can help you with specific advice if you let us know what your reports say. For example...my diagnosis is ILC - that means the ca is in the Lobules, also, it's good to know what grade and stage. BUT...if you don't want to know what your is, that's totally understandable. But if you do, we'll help you decifer it all.
Hang in there... take care and keep us posted.
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Candy--ILC is invasive lobular carcinoma (vs. invasive ductal, which is what most bc are). I assumed your bc is ILC b/c you posted on the ILC board. Like Laura said, if you post the specifics of your path report, we can go through it with you and help you decipher it.
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