Testing - Not diagnosed

ising4u
ising4u Member Posts: 4
edited March 2014 in Breast Cancer #1
I have been reading various discussion boards and trying to educate myself about how my testing should be progressing. I am a little embarrased to ask those of you dealing with an actual diagnosis, but I am taking this seriously, and am so anxious for answers. I had a mammogram March 1st, I hadn't found the lump at that time. A spot compression was done March 24th, ultrasound April 4th and was supposed to have biopsy today, but my doctor ordered the wrong type so the radiologist cancelled it. Now the biopsy is pushed back to a week from today. I see my surgeon Monday. I am having a little freak out. This is taking so long, and people are trying to tell me that since no one is in high gear with me, I should be encouraged, but I am not. This is awful, and not knowing for this long is excrutiating. I have now found the lump that they describe as a "suspicious abnormality" (bi-rads catagory 4) and I think about it all the time. What would you think an appropriate wait time should be? Is this the norm? My surgeon is only in his local office 2 days a week, so I've had a two week wait following ultrasound just to see him for the first time. I just want to know what I'm dealing with. People are saying, "You're gonna be fine" but it feels more like blowing it off instead of comforting thoughts. My doctor just patted my shoulder and told me it wasn't time to worry yet as she was writing out the referral to a surgeon. I feel like I'm in HMO limbo. Two people have told me if I had PPO insurance, it would have never taken this long. Any resposnes would be appreciated.

Comments

  • JKAlley
    JKAlley Member Posts: 84
    #2
    I'm so sorry your having to go through this. The waiting is the hardest part, and people who haven't been through it just don't understand. As far as how long it takes, I've known people that found out in days and people who have been through the agonizing 3 to 4 weeks like your going through. I saw my primary care dr. on Weds. and by Fri. was meeting with the surgeon for a biopsy. My sister on the other hand went through the weeks of waiting and she has the better insurance. The thing I had going for me was I went to a hospital with a breast care center for my mammogram. There are of course drs right there, they checked my mammo and then took me in for an ultra sound right then. Made it all much easier. As it goes, mine was positive and my sister was one of the lucky ones, you just don't know. Like I said, I'm so sorry your going through this. I know it's hard, but try to stay positive. Keep yourself distracted as much as possible (movies, books, tv etc) and breathe deep. Good luck, and let us know how it all works out.
  • Susan956
    Susan956 Member Posts: 510
    #3
    I believe from the first time my Doctor found something suspisious it was probably 3 weeks before I had the results from the Mamogram, Sonogram and the biopsy. I found that time to be very difficult. But I used the time to do lots of research. And it looks like if you have already found this site and you are doing that too. I would keep trying to push to get an answer. I found that knowing a diagnosis even thought it turned out to be cancer was better for me than not knowing. It then gave me something concrete to fight. However, I will hope that you will be lucky like so many women who get a scare but it turns out to be fine when the final results are in.

    Take Care... God Bless.... and let us know how things work out for you.

    P.S. I had the cleanest house that you can imagine while I waited... I couldn't sit still... so I cleaned out every closet and cabinet in my house... turned out great since after I started treatment I was low on energy for awhile.
  • LesleyH
    LesleyH Member Posts: 370
    #4
    Susan956 said:

    I believe from the first time my Doctor found something suspisious it was probably 3 weeks before I had the results from the Mamogram, Sonogram and the biopsy. I found that time to be very difficult. But I used the time to do lots of research. And it looks like if you have already found this site and you are doing that too. I would keep trying to push to get an answer. I found that knowing a diagnosis even thought it turned out to be cancer was better for me than not knowing. It then gave me something concrete to fight. However, I will hope that you will be lucky like so many women who get a scare but it turns out to be fine when the final results are in.

    Take Care... God Bless.... and let us know how things work out for you.

    P.S. I had the cleanest house that you can imagine while I waited... I couldn't sit still... so I cleaned out every closet and cabinet in my house... turned out great since after I started treatment I was low on energy for awhile.

    I'm sorry you have to go through this. Waiting is so incredibly difficult. The thing is that cancer takes about 3 to 8 years before it is even detectable. Clinically, it is not an emergency. I think your wait time has more to do with the size of the facility than the seriousness of your diagnosis. I know how hard it is to focus on anything now. MY advice would be to take up exercise if you don't already. No matter what the outcome is, you will feel better.

    Hugs and hoping for the best outcome.

    Lesley
  • ising4u
    ising4u Member Posts: 4
    #5
    Thank you for responding. I don't feel quite so crazy now, knowing that the wait doesn't necessarily indicate that seriousness of your condition. I'll be very busy this weekend starting tomorrow with an all day spa treatment. I'm being good to me right now.
  • LesleyH
    LesleyH Member Posts: 370
    #6
    ising4u said:

    Thank you for responding. I don't feel quite so crazy now, knowing that the wait doesn't necessarily indicate that seriousness of your condition. I'll be very busy this weekend starting tomorrow with an all day spa treatment. I'm being good to me right now.

    Excellent idea!

    Hugs.

    Lesley
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    You probably are not going to believe me, but it took 10 years for my diagnosis. Had a lump that was watched every year with a mammogram, 2 years before current diagnosis I additionally had an ultrasound. This stuff grows VERY slowly I was told, and is VERY treatable if caught before it gets into your nodes. Even then, my sentinal nodes were involved, I am almost at the end of treatment (just rads to go), and I have a 95+% survival.
    BUT, all that said, the waiting is a KILLER!!!
    Hugs to you, and great vibes as well!
    Please keep us posted, consider yourself part of the family here...
    Kathi
  • ising4u
    ising4u Member Posts: 4
    #8
    KathiM said:

    You probably are not going to believe me, but it took 10 years for my diagnosis. Had a lump that was watched every year with a mammogram, 2 years before current diagnosis I additionally had an ultrasound. This stuff grows VERY slowly I was told, and is VERY treatable if caught before it gets into your nodes. Even then, my sentinal nodes were involved, I am almost at the end of treatment (just rads to go), and I have a 95+% survival.
    BUT, all that said, the waiting is a KILLER!!!
    Hugs to you, and great vibes as well!
    Please keep us posted, consider yourself part of the family here...
    Kathi

    Thank you for your response Kathi. This is a very theraputic environment and I'm glad to have it since I know I'm driving my poor friends and family crazy with my need to talk it out.

    When I got home, my husband had my mammo films from 5 years ago. We picked them up to provide to the surgeon Monday. They were done at a different facility when I was 35 years old (due to uncontrollable itching), and all I was told then was that it came back normal, and I never thought about it again until my 40th birthday. My new breast imaging facility asked if I had had a mammogram previously, and I said I had but couldn't remember where. When I heard I needed a biopsy, I spent some time backtracking and found the previous facility.

    I explain all that to say that I looked at the films my self this afternoon, expecting to see a clear area where there is now a visible finding even to my untrained eye, but it WAS there. I'm surprised. And they rated it catagory 2. I was never even informed that there were identified benign findings as I was not called back. Does this mean anything to any of you? There was a recommendation that I continue with annual mammograms but that didn't even happen because I wasn't 40 yet and my OBGYN never ordered them after that.

    I'm wondering why it's now a category 4 suspicious abnormality when the films look so close to the untrained eye.

    Hmmm.....
    Jennifer
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    ising4u said:

    Thank you for your response Kathi. This is a very theraputic environment and I'm glad to have it since I know I'm driving my poor friends and family crazy with my need to talk it out.

    When I got home, my husband had my mammo films from 5 years ago. We picked them up to provide to the surgeon Monday. They were done at a different facility when I was 35 years old (due to uncontrollable itching), and all I was told then was that it came back normal, and I never thought about it again until my 40th birthday. My new breast imaging facility asked if I had had a mammogram previously, and I said I had but couldn't remember where. When I heard I needed a biopsy, I spent some time backtracking and found the previous facility.

    I explain all that to say that I looked at the films my self this afternoon, expecting to see a clear area where there is now a visible finding even to my untrained eye, but it WAS there. I'm surprised. And they rated it catagory 2. I was never even informed that there were identified benign findings as I was not called back. Does this mean anything to any of you? There was a recommendation that I continue with annual mammograms but that didn't even happen because I wasn't 40 yet and my OBGYN never ordered them after that.

    I'm wondering why it's now a category 4 suspicious abnormality when the films look so close to the untrained eye.

    Hmmm.....
    Jennifer

    Jennifer,
    It took me getting colorectal cancer, and a PET scan, AND then STILL I had to INSIST on a needle biopsy for the medical community to take this lump seriously.
    Even to a trained eye (a breast cancer specialist), HE was surprised when the biopsy came back the way it did...on the films, "nothing had changed in years". He was even MORE surprised when nodes were remove during the lumpectomy that THEY were involved.
    Self advocacy is the ticket...YOU know your body...AND when you feel comfortable. (Interesting, though, your itching).
    ANYWAY, push, push, push until you get a good answer...I DID...and ended with only stage II invasive breast ca...VERY treatable.
    All of my hugs and vibes to you,
    Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    KathiM said:

    Jennifer,
    It took me getting colorectal cancer, and a PET scan, AND then STILL I had to INSIST on a needle biopsy for the medical community to take this lump seriously.
    Even to a trained eye (a breast cancer specialist), HE was surprised when the biopsy came back the way it did...on the films, "nothing had changed in years". He was even MORE surprised when nodes were remove during the lumpectomy that THEY were involved.
    Self advocacy is the ticket...YOU know your body...AND when you feel comfortable. (Interesting, though, your itching).
    ANYWAY, push, push, push until you get a good answer...I DID...and ended with only stage II invasive breast ca...VERY treatable.
    All of my hugs and vibes to you,
    Kathi

    Sorry, for the PS, but I, too, have and HMO...they have been good about approvals...all my major stuff (bowel resection, PET scan, breast lumpectomy) was approved OUT OF NETWORK and quickly...but I DID keep calling to make sure that it was in process.
    Kathi
  • katcam
    katcam Member Posts: 83
    #11
    when i was diagnosed with cancer the first time in 1990 i found myself on my back on a guerny on the way to the operating room before i knew what hit me. all the doctors would say the lump "was probably nothing but you should have it removed." my surgeon also only sees patients 2 days a week, but saw me right away & i was operated on within a week. i think when they suspect something they rush you into surgery. in 2004 after my mammogram i got the rush again to get a biopsy & found out that the cancer had come back. then last year when i had the mammo (6 months after treatments ended) i had to get 2 biopsies done (yuck! - i insisted on valium this time!). this time though, my surgeon said that i could wait to have them done - he said even a month would be ok. that's when i knew he didn't suspect. even still, waiting for the results once i had the biopsy done was horrible - it took sooooo long - over a week. i was getting scared because he usually will call if everything is ok and this time he didn't. but my tests came back clear - no sign of malignancy. it is soo hard to wait for the answers!! that's worse than the diagnosis.
  • 24242
    24242 Member Posts: 1,398 Member
    #12
    Well at least the tests will be done when you finally see the surgeon. I saw surgeon then went and had needle biopsy followed by the altra sound. When my first lump was diagnosed they said it was fibrous cyst. At the time they didn't ask about smoking or my father's side of the family history. My paternal grandmother had breast cancer back in the 60's and lived almost 10 years after her surgery and cobalt treatments. So I have been well aware of my own risk factors yet this doctor was NOT?
    I found the lump at the size of the end of my baby finger in my breast. The second doctor I saw at a breast health clinic said he wouldn't even diagnostically check since I wasn't even 40. He told me to keep an eye on it and if changed then get it looked at. I asked him why they didn't ask me about smoking? He said couldn't link it to breast cancer and this was only in 96. I asked why he didn't ask me about family history on father's side. He even told me not linked. I had to move to another province in Canada and get very ill before my cancer was diagnosed because I was too young, too healthy, and too well built being so athletic that I couldn't possibly have cancer.
    If you don't test you will never know biopsy is a must. Even so biopsy is done are there any gaurantees it won't turn out to be cancer down the way?? I remove lumps and have a lump they don't want to remove or biopsy right now even though I have had it in my lymph nodes.
    I ended up being diagnosed stage 3 with spreading to lymph nodes just 6 months later after seeing that one doctor. They might have caught it before spreading had they actually checked and hard not to beleive that to be.
    Be good to yourself,
    Tara

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