Scared and alone

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Jennmommi
Jennmommi Member Posts: 4
edited August 2017 in Waiting for Test Results

This is simply the most scared I have been. I am married and have 3 kids but I am married to a man in love with his work and himself and who is lacking empathy. For the most part, we are good, but anything that involves needing support or empathy, I pretty much have to find those elsewhere. I am used to it by now, but nothing has ever been like this. I had tumors removed from my colon, and both ovaries but they were all benign and I pretty much just relied on my best friend and sister who lived in town to get through those scares. Also, those happened super fast like within a week of finding them and having a CT scan I was schedules for surgery. There was really not a long wait time to get worked up or dwell on possibilities.

This time is different. My sister moved back to our hometown 5 hours away from where I live, and my best friend moved across the country. I have no one close to me to vent to, talk to or get help /support from. This time nothing seems to be moving fast. It is as if no one but me thinks this is important enough to find out what it is and get a diagnosis. I don't know how long it has been there before I found it 6 weeks ago, My Dr told me when I was 19 yrs old that I had fibrocystic breasts and that they would feel lumpy and I would probably not notice anything so I just didn't bother with self exams and relied on my annual wellness visits to find anything for the most part. I actually found the lymph node by accident because I noticed it was sticking out of my armpit area and looked strange compared to what it normally looked lik, so I found the lump in the armpit and proceed to do a self exam.

I have a swollen lymph node in my right armpit and lump in my right breast. Nothing is painful, not even the lymph node. When I found it during my self exam, I immediately called and made an appointment at my GYN for my annual wellness visit and mentioned it to them when making the appointment but the earliest they could see me was 4 weeks away. So I waited, no change in the lump or lymph node that I could tell in those 4 weeks, but I did find a second lump near the first one. He was concerned so referred me to the Breast Health Center to have an ultrasound. They couldn't get me in for almost 2 weeks. So It has been 6 weeks since I found the lump and I went for my ultrasound yesterday. So he was and I quote, "Very concerned" about what he was seeing on the ultrasound. He took several pictures and it took 2 hours (not sure if that is normal for a breast ultrasound but it seemed like a long time). He wanted me to come in for a diagnostic mammogram and possible (depending on the mammogram results) needle biopsies of the node and lump(s). But when I went to the window to check out and schedule the diagnostic mammogram they scheduled it 4 weeks away. I am already diagnosed with Anxiety and Depression, and this has made it worse. My husband and I are arguing, I am crying at work, I have no support in this at all and I don't even know what or who to ask questions about it.

Is this time frame typical? Am I overreacting? Should I be insisting on a closer appointment time?

Comments

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    I'm so sorry that you are going through this. It's hard enough to deal with when you have good support and timely tests. To have neither right now - I don't know that it would be possible to overreact, really.

    Everywhere is different. When I called the OB/GYN office about a lump I had found, they were able to schedule me to see a doctor within two days. That doctor called the radiology center and got me in the same afternoon for a diagnostic mammogram and ultrasound. The center scheduled me for a biopsy two days later. So, in my case, from my first call to the OB/GYN office to having a biopsy was less than a week. If I were you - I would discuss this delay with your doctor. It's possible that they can make arrangements for you to be evaluated sooner. They most likely don't even know about how long everything is taking.

    That said - many people do have to wait for a pretty long time. And even if it turns out to be cancer - most are slow growing and most people would say that a matter of a few weeks won't really make any difference. But it certainly makes a difference in how you feel!


  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    Jenn, so sorry you find yourself here with breast health concerns. It can be very scary to find lumps and to have to wait to find out what they are. If you feel like you didn't get in as quickly as the radiologist wanted you to, why not call back and talk to his nurse. Or have your gyn call and consult about the timing.

    In the meantime, to help put things in perspective:

    Image result for breast cancer diagnostic process

    So notice that you are advancing to the second stage - diagnostic workup. 75% of the women who make it to that stage are told they should return to regular or 6 month follow up (have less than 3% likelihood bc). Even if you get to the biopsy stage, 80% of those are found to be b9. So you are early in the process and the odds are astronomically in your favor.

    Now, I do know that anxiety can be extraordinarily difficult, and this situation can cause anxiety even for those women who don't normally experience much of it. Please feel free to go to my thread here:

    https://community.breastcancer.org/forum/83/topics/855477?page=3#idx_68

    for some tips on how to make it through your wait. Good luck for b9 results!

  • mommakat
    mommakat Member Posts: 147
    edited July 2017

    Sorry you're going through this Jennmommi! I'm in the waiting phase with you, and it is SO hard. And having a support system is so important. Lean on this group for sure, and I'm happy to listen anytime. Feel free to private message me.

    I'm in the middle of the process. I didn't find anything, but went in for my FIRST mammo at 40, like I was supposed to. I actually went the week my mother in law passed away, which was crazy but I didn't want to change the appt. So they called me back the day my daughter was graduating to tell me they needed to screen my right breast again because it was dense. I was pretty cool then. Had the 2nd mammo and had to wait about half an hour, when they told me they wanted to do an US. They did that right away, and decided they wanted to do a core needle biopsy of the area. That appointment I couldn't get for 2 weeks. Had that done, waited 4 days and got b9 results (yay), but then the next day my gyn sent me a note that she saw PASH in my results and thought I should see a surgeon for a 2nd opinion and maybe have that removed. I was still OK, and the surgeon couldn't see me for a over a month (so 8/10). I was still cool. Then last week the radiologist called and said she didn't like the pathology results, felt they were discordant with what she saw, and I should see a surgeon and she was going to recommend having the area removed.


    So from my first mammo to the surgeon appt is like 2 months! And I'm reading like crazy, and have convinced myself I do have cancer and they missed it on the biopsy. Waiting is awful.

    My hubby is good, but only for coming to appts. I don't think anyone realizes that we really need support all the time, because it's ALWAYS on my mind. Sometimes in the back of my mind, sometimes it's all I think about. I also have anxiety attacks usually, and it's MUCH worse right now. My mom also just moved in with me too, which is NOT helping at all. And everyone in my life is just going about their normal day, completely not acknowledging that this is looming.

    I'm so sorry you have to wait, but like NotVeryBrave mentioned, even if it's malignant, nothing is going to change much in a few weeks. But it doesn't help your mental state at all. I would talk to your doctor. Maybe if she can explain to the center that you have severe anxiety and need to be seen sooner. You don't want this to cause long term damage at work or home. I was a basket case yesterday at work and literally was biting people's heads off. It was awful. Today, I'm much calmer (of course I took Xanax with breakfast, so that helps lol).

    Just know you're not alone. There's a whole bunch of us here, stuck waiting with you. Sending you hugs and positive thoughts!



  • Jennmommi
    Jennmommi Member Posts: 4
    edited July 2017

    Thanks, this is helpful.


  • Legomaster225
    Legomaster225 Member Posts: 672
    edited July 2017

    Personally I think that is a ridiculously long time to wait. I would be talking to the doctor to see if they could talk to them and get you in sooner. All my initial testing was done in just a few days so we knew what we were dealing with. Took about a month to get through everything and start treatment. I'm not sure where you live but I'd be pushing a little.

  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited July 2017

    I'm so sorry for what you are going through. It is terribly difficult. I understand. Hugs...

    From my first mammogram to the day of my mastectomy was about three weeks, so this sounds like an very long time to wait to me. Is there anyway you can call and try to get in sooner? My onco has a very busy practice. Occasionally, I will have to call daily to try to schedule my appointment sooner to keep it around the three month mark. I'm just wondering if something like this would work?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    I agree with Legomaster. Four weeks is a long time to wait for a biopsy. I would push for an earlier appointment if I were you or even check out some alternative breast care centers.

    I'm sorry you feel so alone; does your breast care center have a support group? ((Hugs))

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2017

    I disagree that it is a long time to wait. It took from the first of November for my screening mammogram to Mid April to get through diagnostic mammogram, stereotactic biopsy and excisional biopsy at an NCI comprehensive cancer center facility. If they think it is urgent they "triage you" up the line.

    Women already diagnosed with cancer frequently wait for weeks for more testing before surgery.

    This is not an emergency.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Hmm, it might not be an emergency, but if I suspected nodal involvement, I wouldn't want to wait four weeks, especially if I suffered from depression and anxiety. You would hope that the breast care center would "triage" Jennmommi up the line if the radiologist thought time was of the essence, but there's no guarantee of that.

    By the way, I had my biopsy a week after my mammo/ultrasound. Within a month, I began chemo.

  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited July 2017

    Completely agree with you, Elaine.

  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited August 2017

    it could be an emergency if there is nodal involvement. You have to be your own advocate. I most definitely would be calling to request an earlier appointment and/or put my name on the cancellation list.

  • Jennmommi
    Jennmommi Member Posts: 4
    edited August 2017

    So here is an update. I went in for the diagnostic mammogram yesterday and they decided to do a second ultrasound because mammogram was inconclusive. The Dr still saw the area of concern on the ultrasound and still couldn't find anything abnormal about the enlarged lymph node on the ultrasound. BIRAD was a 5. He did a core needle biopsy in three places, and a second mammogram after the biopsy to check placement of the titanium marker. I am terrified. My husband seems to have come around though and was pretty supportive yesterday and today. Now I just wait for pathology and hope for b9 findings.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    Sorry you're still waiting on results, Jennmommi, but I am glad that you've gotten the biopsy done and will know soon. We are here if you get any confusing results. Hoping for b9 results for you as well!

  • Jennmommi
    Jennmommi Member Posts: 4
    edited August 2017

    I finally got my results today. It is a complex fibroadenoma, which is benign. They want to watch it, see if it grows, and have me do a mammogram in a year unless I notice changes or have any issues before a year is up. I am still very sore from the biopsy and have a bloody discharge, so I hope that those will resolve soon.


  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    So glad you got back b9 results! Go celebrate!

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2017

    Yay for benign results! I'm sure you are sore after 3 biopsy sites! As the swelling and bruising resolve, you should feel much better.

  • nikmar
    nikmar Member Posts: 4
    edited August 2017

    So happy for your benign results! I had an axillary lymph node removed 2 years ago that was benign.

    Now I'm sitting here waiting for a stereotactic biopsy tomorrow due to a cluster of microcalcifications in left breast. For some reason tomorrow's procedure (outcome?)has me more anxious than the lymph node procedure. I feel like I should be up and about getting things done, but I can't get myself motivated.

    I guess I'll just take a "me" day and read all the supportive messages here. Everyone is so supportive in ways that others (irl) who haven't been through the tests and the waiting don't really get.

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