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Not Diagnosed and Waiting for Test Results? Start Here

moderators
moderators Posts: 7,657

Often, the hardest part of screening and testing isn't undergoing the tests themselves, but WAITING for results to come back. If you're like most people, you will want your test results as soon as possible.

Read here for steps you can take to feel more in control of the process:

In addition, there is a thread on Abbreviations to help you follow discussions going on in the community.

And If you've been diagnosed with breast cancer and are waiting for test results about your diagnosis, connect with others in the Breastcancer.org Discussion Board forum Diagnosed and Waiting for Test Results.

We hope this helps!

--The Mods

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Comments

  • wallycat
    wallycat Member Posts: 1,181
    edited October 2011

    It would be so wonderful if doctors actually REALIZED that their patients are stressing.

    To make someone wait and wait and wait and not return calls for ANY test should be

    humilating and forbidden.

    just sharing my angst and trying to understand why doctors think they are smart when they are so clueless about obvious patient issues.

  • mawhinney
    mawhinney Member Posts: 14
    edited October 2011

    I have learned to be proactive. When tests are ordered, I have learned to ask how soon the results will be available and when and how will I be notified of the results. I relate that I want a written copy of the report for my files. I also state that it is alright to phone me with the results.

  • renaedarlene
    renaedarlene Member Posts: 3
    edited October 2011

    So I had a diagnostic mammogram and an ultrasound. Was told I had to have a biopsy and it is scheduled for next week.  I have a definite tumor.  My general practitioner is out this week...how do I get a copy of the actual report? Should the radiologist have supplied me with one? I am left with too many questions and no paperwork. What's the protocol here? Help! Thank you. Renae

  • Megadotz
    Megadotz Member Posts: 13
    edited October 2011

    Call where you had the scans done and ask for a copy of your reports.  If there's a procedure, they can let you know what it is.  When you go in for the biopsy let them know that you want a copy of the results and ask when and how you'll be notified. 

    Here's hoping for B9 results.

    Meg

  • renaedarlene
    renaedarlene Member Posts: 3
    edited October 2011

    Thank you, this is great help...I'm playing mental guessing games trying to decipher their words - what did they mean "At least you caught it early" and "You are where you're supposed to be" and "You need to schedule a biopsy" - Did they see cancer on the mammo? To much guessing...I need to see the report myself to make sense of it rather than playing a guessing game in my head.  Thanks!

  • LisaAlissa
    LisaAlissa Member Posts: 34
    edited October 2011

    Remaedarlene,

    I can't answer the "big question" for you, but I can tell you that "You need to schedule a biopsy" doesn't mean they "saw cancer."  Only a pathologist (looking at cells) can tell you for sure that it's cancer.  "You need to schedule a biopsy" just means that they see something suspicious, so that they can't screen cancer out.  The next step in the screening process is a biopsy, and that's what a BIRADs 4 or 5 means. When you see the report, I suspect that's all you'll see.

    And in fact, of people in the screening process (where you are now) who have biopsies, 80% have benign results.  So your chances of having cancer screened out are still excellent!

    I know that it's difficult to stay where you are in the process, but if you can, don't project yourself into "the 20%."  

    HTH,

    LisaAlissa 

  • renaedarlene
    renaedarlene Member Posts: 3
    edited October 2011

    Thanks LisaAllisa,

    Yes, I'm driving myself crazy. Mainly because it's not a cyst, it's a tumor. Today, I inspected my breasts and can't believe I didn't notice that my right nipple was pointing down.  The weight of the tumor is pulling down my boob! My God, how could I not notice?

    I'm just trying to stay busy with chores, etc., the obsessiveness seems to come and go.

    Thank you!

    Renae

  • alphaomega
    alphaomega Member Posts: 2
    edited January 2012

    Tomorrow is my lumpectomy and I'm scared. Mysister was just diagnosed with BC about 2 months ago and is having a double mas. in 2 weeks. I have a mass about 2 cm.which he is removing andsending to lab for testing. I asked my chances that it is cancer and he said 50/50. I am hoping it is not. Anxiety level is high.

  • Stacie
    Stacie Member Posts: 25
    edited March 2012

    My surgery was Monday and my path report is due in anytime. I already knoe one swollen node was cancerous because they did a frozen section during my surgery rhen an AND was performed. The BS said the other nodes all looked healthy. I am nervous about what i will learn about the cancer and how many nodes are cancerous.

  • snassar
    snassar Member Posts: 5
    edited March 2012

    Stacie I hope everything is going okay.  I am new to this list. today was Ultrasound after 2 mammograms. They don't tell you everything except Radiologist will contact my Dr. and she will contact me. The woman doing the ultrasound wasn't too friendly (should be a requirement in that job). I asked how long before I hear anything and she said allow a week. Hope everything is going okay for you.

  • fibromom
    fibromom Member Posts: 1
    edited March 2012

    I have been told I have DCIS and I had a core biopsy today...I am now waiting for the results and I am stressed out...I have not told family members about the biopsy because I am waiting until I have some news...I have been reading information on this site and I feel more confused than ever...my husband is trying to be supportive but he really has no idea what I am going through...I really do not know what to expect next....Its going to be a long week....

  • littlelady55
    littlelady55 Member Posts: 1
    edited March 2012

    I am already in treatment for stress and anxiety.  I have DCIS, core biopsy done. Surgery scheduled for tomorrow morning, lumpectomy with lymph node biopsies.  After that, I wait again for results.  Was already told I needed 33 radiation treatments.  I havent told hardly anyone cuz at of now, the only thing certain is I have cancer. That is not something I want to share.  Tomorrow, it might be gone or it might have spread.  Is there anything else? Waiting for drs, biopsies, tests, surgeries, diagnosis. Waiting waiting and waiting.  I understand how all of us are all stressed out, moody, high anxiety, etc.  I have been a zombie since I first found out and that was 2 weeks ago. What do we do, what's important, I am so tired, what about all of you?

  • wendybee
    wendybee Member Posts: 1
    edited May 2012

    When I found a lump in my breast last Tuesday (May 15) I wasn't even concerned.  I got a mamogram the next day and told my husband not to worry because I knew it was a cyst and would be nothing.   To my shock, the radiologist came back after the mamo and ultrasound and said that the lump was highly suspicious, that the edges were ragged, not smooth like a cyst and that I needed to get a biopsy soon and suggested, within the next two days.  I got the biopsy on Thursday the 17th and am now waiting for results.  I have gone from not being worried at all, to being certain it is Stage IV cancer.  All of a sudden, I am realizing all of the symptoms I have been experiencing, pain in my lungs, veins on my breast and it is all indicating cancer that has spread.  I am trying to focus, but really having difficulty.  Of course I am not telling my family, kids (16 and 12) or friends because I don't have results yet.  So here I am...telling all of you. I am frightened, but I will be strong.  There is nothing else I can do.  If it is the worst, I will fight it.  Any words of encouragement will be appreciated.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited May 2012

     I am waiting for mamo results from my mamo last friday, i was diagnosed  last year and they came  very quick as they wanted repeat ones done because they were suspious of an area in L Breast and it turned out to be a grade 3 ductal carcinoma, stage 1a,  this time i had to have  a follow up six month one after rads and compare the two, last weeks and last years. i am too nervous to call them, i hate bothering  them as i know they are busy.  but i do wish i knew one way or the other. I may have to be brave and call them. But yes ladies the waiting is  worse than knowing at times.

  • DigitalCowgirl
    DigitalCowgirl Member Posts: 25
    edited May 2012

    You know, this waiting needs to stop.  I work for a major computer company who partners with Stanford Medical.  I know for a fact Stanford has trained computers to analyze biopsies that are far more accurate than human analysis in far less time.  There must  be a way to automate quicker notification to medical teams and patients with today's technology.  Heck we have capability to match fingerprints against millions in the AFIS database and notify thousands of law enforcement agencies in seconds, but it takes a week for a cancer biopsy result. That's just BS!

    I am going to write up a suggestion and submit it to our research labs for consideration.  We girls need to also lobby Washington and help those who are yet to be diagnosed.  I'm mad as hell that we are subjected to this inhumane waiting and will be taking action for change in my own little way.

  • Mhundt
    Mhundt Member Posts: 1
    edited July 2012

    I am waiting for my appt with the Dr to discuss my biopsy results.  I am so very scared I can barely think.  Is it normal to have met with a oncologist the same day I had my mamogram diagnostic appt -  and have him take me in to look at my mamogram and explain to me about the microcalcification and that it is a concern.  I feel like I have been diagnosed without even having the biopsy results.  I did not get a good feeling from the conversation I had with the Dr.  has anyone else experienced this?

     Thank you!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited July 2012

    if you have a bad feeling about a doc at the start, get a dif one as it will not get better

    first radiation doc I saw took 3 cell phone calls while he explained my propsed treatment

    I ran out and got a new doc!

  • PatiencePlease
    PatiencePlease Member Posts: 2
    edited July 2012

    Surgery was 6 days ago (but only 4 BUSINESS daysWink) and I'm sitting here back at my desk and trying not to go crazy waiting for results. (Yesterday, I called at 2:00 pm, I decided today, I would wait until 4....). 

    I'm so glad I found this web site - it is very helpful to know it's just not me!

    I love the comments from Digital Cowgirl (ABOVE)  I would love to know if there is some way we can lobby to stop the incredible torture of waiting for results.  Interesting concept.

    Thanks for being here - you all get that no news is no news.

  • moderators
    moderators Posts: 7,657
    edited August 2012

    Any news from your 4pm phone call, SallyMakesSense? Waiting is heck! We hope you get your answers soon.

    The Mods

  • PatiencePlease
    PatiencePlease Member Posts: 2
    edited August 2012
    Thanks!  I FINALLY got all my results last Friday (7 business days/9 actual days...but who's counting?!?)  Everything looks pretty good so far.  I meet with med onc tomorrow and rad onc on Monday and surgeon on Wed.  Lot's of waiting with this diagnosis.  I'm impatient by nature and have always enjoyed checking things off and I have to learn how not to do that.  One report comes back and next its waiting to see what the radiation schedule will look like.  After that I guess I'll be waiting to see how the radiation is going to affect me.....but you all get this and that's kind of nice....Smile
  • besa
    besa Member Posts: 283
    edited August 2012

    When it comes to test results I am proactive.  I hated waiting two weeks or more for results of important tests.  I learned that if HIPAA laws are applied correctly patients are entitled to a copy of the same results sent to their doctor.  I now talk to the facility doing the tests and tell them that I want a copy of the report.  (I often pick up the report in person to get it quickly.)  Usually I have to sign a release form - releasing the reports to myself.  I also talk to the facility before I have a test to make sure they will be easy to deal with - if not I vote with my feet and go elsewhere.  Most of my radiology reports are available within 24 hours. I use hospital labs for blood work instead of the big commercial labs.  I found it is easier to get results from hospital labs.  At this point I have absolutely no trouble understanding the content of the reports.  This works for me.  The only negative I can think of would be if you are uncomfortable seeing your results before your doctor contacts you. 

  • lukefrancis1
    lukefrancis1 Member Posts: 4
    edited September 2012

    Ihave been dealing with the possibility of bc from July27th...I posted before that radiologist did core biopsy and missed lesion!  First time in 6 yrs that this happened to her.  I am now scheduled Monday 9/27 for excisional biopsy!  Have been told 9 day wait!!! I am at my wits end....can't sleep, trying to be positive, but I have my moments.  It is not fair that we have to have this waiting game!

    Any encouraging words would be greatly appreciated.

  • DigitalCowgirl
    DigitalCowgirl Member Posts: 25
    edited September 2012

    Hi lukefrancis,

    I'm  sorry you have to wait so long.  It's so barbaric isn't it?. I had to wait about a week so I completely understand your worry.. Let's hope you get word that it's benign.  You found the right place for support.

    Big hugs. 

  • laurendperugini
    laurendperugini Member Posts: 1
    edited October 2012

    My name is Lauren Perugini, and I am a second year Master's Degree student in the Digital Game Design and Development program at C.W. Post University. I am currently working on my thesis project, which is an interactive web-based conversation; it attempts to alleviate a woman's feelings of stress and anxiety in regards to a wide array of breast issues, including the possibility of breast cancer.

    While the internet and digital mobile apps are rich with data regarding medical illnesses and symptom searches, there are few web applications that attempt to educate and reduce a sense of anxiety in a patient, especially if that patient is suffering from a sense of nervousness due to a current or future breast biopsy. This interactive conversation aims to reduce one's anxiety via education.

    Currently, I have little research regarding the diagnostic process and how it affects women both psychologically and emotionally speaking. Since you all have first-hand experience in this process, I am seeking your help by asking you to serve as one of my interviewees for my thesis. I know your expertise in the aforementioned subject matter could help me map out my work. Thus, I would like to schedule an appointment with you to discuss this further. I understand however, that everyone has tight schedules so if you would still like to participate and it would be easier for me to send you a questionnaire, that would be fine as well. Please just let me know what email or mailing address I should send it to. I appreciate any help that you can give.

    If you have any questions, you can directly contact me via e-mail at [email protected]. I look forward to hearing from you and hopefully having the opportunity to learn from you. Thank you very much!

  • d-marie
    d-marie Member Posts: 1
    edited October 2012

    I, too, am awaiting my biopsy findings. I made the choice, after the ultrasound, to let family and friends know. I find it comforting having them pray for me. I do believe in the power of prayer, not so much for a cure (though I would love that) but for strength and peace of mind. I hope all has turned out well for you.

  • DigitalCowgirl
    DigitalCowgirl Member Posts: 25
    edited October 2012

    D-MARIE,

    I'll keep you in my prayers.  Waiting is so stressful.  Please try to find something fun to keep your mind occupied.. Let us know your results please.

  • brooksdawn45
    brooksdawn45 Member Posts: 1
    edited November 2012

    Please help I dont understand whats going on Had to get a 2nd mam. done on my left breast said results need to be further evaluated. then they made me wait to see if the radiologist wanted me to get an ultra sound. well she did and they did it right then and there. all I saw was a solid black mass about the size of a silver dollar. The lab tech then gave the doc the images and the doc did another ultra sound, and breast exam but she couldnt feel the mass. She then told me I have a mass and will need to get a stereotactic core biopsy, she told try not to worry that It had binign characterists. Of course I research it on internet I thinking I may have a fibroadenoma from what I researched. But still not sure cause the cyst ones and solid ones and mine looked black solid but oval with smooth edges. She never said it could be cysts and never gave it a medical name or term. Plus biospy couldnt be schedulesduntil DEc 4th was 1st opening. please help me try to understand Im 45 and concerned.

  • zabbie
    zabbie Member Posts: 1
    edited December 2012

    Hi, I am not sure if I am writing in the right forum as I have nevr done this before...but here it goes...

    I felt some hard areas in my breast and it got worse during my period, after, it got a little better but was still there. I had an ultra sound which came up normal and a mammogram which showed an area of concern.

    This is what the mammogram report said: "There is a right axillary nodes. The left axilla is free of nodes. A cluster of coarse calcifications are in the upper outer quadrant of the right breast. The cluster configuration is somewhat concerning. Needle localiztion/biopsy is advised for further evaluation. The parenchyma of the left breast is normal, with almost equal amounts ofglandular tissues and fatty tissues.There is no skin thickening, prominent vessels or microcalcifications."

    I live on a small island so we do not have breast specialists etc. I went to a surgeon who examined me and felt a small lump. I had a surgical biopsy yesterday. The surgeon said that he removed the lump and some surrounding tissue. Both the lump and tissue had a gritty feeling from the calcification. I pressed the surgeon to give me some percentages and he said about 60 percent it is not cancer. While this is somewhat reassuring, I am still freaking out! I will not get the results till next Friday, maybe Monday as they send the sample to the USA. I am trying to stay positive and hold on to that other 40 percent that is in my favour (though I do understand that it is not a guarantee). What I wanted to know is what other conditions can cause a lump with calcification? Any info you could give me would be hugely appreciated.

    Thanks

  • MSSWISS
    MSSWISS Member Posts: 6
    edited January 2013

    My docs have been amazing. I have started up a unique pink file with copies of images, reports and questions for each visit all in chronological order. As im going back and forth, between surgeon and oncologist sometimes they don't always have the latest letters since it depends on our postal system so I can give show them a copy if I have received it first.  I feel more in control.  Test results have been taking a while but I had my PET scan on 21st Dec which just about finished me off., When I got back from hospital, 2 hours later my oncologist called me to say that the results were very promising. I was not expecting any info until after the holidays and I broke down in floods of tears of relief.How kind he was trying to help me get through the xmas hols without major worrying.I think we forget sometimes that the labs have many slides to go through for many patients and the tests they do take time to perform but it's always good to ask the doc how long they will take so you have an idea of when to start following up.I have now developed a keen interest in the role of the patholgist and have started reading up more on the tests that are being done on me.

  • terri39
    terri39 Member Posts: 1
    edited January 2013

    Hi I am waiting for results from biopsy. I had a mammogram and ultrasound that came back abnormal. Mammogram came back thickening of areola and dense areas. Will they send a certified letter to let you know your results? Worried!!!!!