Don't skip your mammos!

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D00056
D00056 Member Posts: 9
edited October 2015 in Waiting for Test Results

Hi I'm here because I am in limbo and a "watch and wait diagnoses" this month. I am a person who skipped 4 yearly mammos in a row. Yes, my only mammos I had were 2010 and 2015. The doctor had a "finding" and so I was called back in for more tests only to be told to "come back in 6 months because we don't really have any mammos to compare the findings to." I now have to wait until February. I know you may say you only had to do is retake a mammo and a sonagram and no biopsy but I feel this is just as scary and worrisome. Is anyone out there gone through what I'm going through? I need to know? The other thing is don't skip your yearly mammos or you'd be in the same situation as me. I'm truly terrified.

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2015

    Yes, I missed 4 years of mammograms the 2010 mammogram showed nothing but the 2011 mammogram found my 2 small tumors. Between 2006 and 2010 I have no data to compare.

  • octogirl
    octogirl Member Posts: 2,804
    edited September 2015

    Di, there are a number of women who post on these boards who had tumors found after their very first mammo. Honestly, what your doc says about lack of baseline information doesn't quite make sense to me; sure it is nice to have a baseline for comparison, but a lot of women here report either finding it at baseline, or that their tumor didn't show up on mammo due to dense breast tissue. What were the further tests you mentioned? I'd consider asking for a second opinion on waiting. You could have an ultrasound or MRI done now to look at that suspicious area.

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited September 2015

    Tell them you cannot wait and need to know, if you are worrying about this isn't going to help you, so insist on an ultrasound or MRI. Did they say your breast tissue was dense or give you a birad number?

    What is this significant finding?

    Be persistent and ask lots of questions, knowledge is power.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Hi D-

    We want to welcome you to our community here at BCO. We're sorry for the worry that brings you here, but we're glad you've joined us, and hope you find it to be a supportive place.

    We agree with with ALittleBitBritish and Octogirl about either seeking a second opinion, or pushing for further testing. If there was a "significant finding", a baseline isn't really necessary to determine if it's troublesome. Tumors are discovered at the first mammo quite frequently, with no baseline comparison. Asking for an ultrasound to see the suspicious area more clearly seems like a reasonable request.

    Please keep us posted on how you proceed, we'll be thinking of you!

    The Mods

  • Skittlegirl
    Skittlegirl Member Posts: 428
    edited September 2015

    I only had one mammogram (plus ultrasound) since I am young. Then had a biopsy. I would push for further testing. The biopsy really wasn't that bad, if you ended up needing that to know more about the findings from the mammogram. Mine was ultrasound guided. Actually the "don't breathe" parts of the mammogram is worst IMO. Get answers. Good luck.

  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited September 2015

    Were the two mammograms at different facilities?

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    no both the same place.

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    I was called back for a sonagram and another mammo. While the Dr was doing the sonogram he was saying, I don't know, I'm not sure. You don't have any other mammos to compare with? Well come back in 6 months it's probably a cyst. I didn't like how he wasn't sure. I also did ask the Dr. Is it more common to have breast cancer found on the left, right or both. He stated left, and it's my left. I also see that side seems much larger and that's something to consider too. At least I read this. Also I will call my Dr. And talk to him in length about this.

    What is bothersome is a rash would appear in a specific spot after each shower which I brought to my OBGYN  for over a year and it now happens to be in the same area the Doctor is studying now. Related? 

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    I did have a biopsy

    On my nipple area/they thought it could be pagets diease. Then after that it cleared up.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi D00056:

    I also fell behind on my screening. The most recent mammogram was several years old. Old enough that they were not even digital, yet they served as a sufficient comparators (once they got them out of storage).


    Please push for further assessment. I note you said:

    "The doctor had a "significant finding" and so I was called back in for more tests only to be told to "come back in 6 months because we don't really have any mammos to compare the findings to.""

    Are you saying that you had a suspicious finding on a mammogram, were called back in for a diagnostic mammogram, but that the diagnostic mammogram was not even performed? Please let us know.

    If that is the case, it seems like they are flip-flopping. Also, the reason given (lack of a good comparator) is spurious (bs) as noted by the Moderators and others. All of which makes me think you may wish to consider transferring your care to a better breast center if at all possible. You can request that copies of all images taken to date be provided to the new center or request them on disk and hand carry them (that was the process I had to follow in 2013).

    Whether or not you transfer your care, as suggested above, please also request copies of all written reports regarding the recent and prior mammograms, so you can be fully informed. Look for comments about density and any BI-RADS scores, as well as possible recommendations from the radiologist for further assessment by imaging and/or biopsy.

    One thing I learned was that the skill, judgment, and/or experience of the radiologist can be a factor in accurate diagnosis. After my diagnosis of breast cancer on the right side, I sought a second opinion review of all mammograms, MRI imaging, pathology from biopsies, and all associated reports. My main interest was in obtaining a review of the pathology and surgical recommendation. I was surprised when a diagnostic mammogram of the left side was requested, which led to a surgical biopsy, and finding of DCIS on the left. [Edited to add: This is not evidence of the left side assertion, but just an example in which the skill, judgment, and/or experience of the radiologist was important.]

    BarredOwl

  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2015

    Breast cancer more common on the left? Is there scientific proof of that? Sounds like an off-the-cuff answer to me.

    Agree with the others that you get another opinion. Take your reports/films/digital files and find another place.

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    Thank you for all that information. That's great! I did get another mammo and a side (lateral view?) plus my sonogram.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi D00056:

    That's good. Still, a second opinion review is a good idea. Here is more about the second opinion process (note the additional links to other sections at the bottom):

    http://www.breastcancer.org/treatment/second_opini...

    BarredOwl

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    I definitely will! And I appreciate all the knowledge and support!

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    Thank you for all that information. I went ahead and requested my films and records for a second opinion. I understand this is not covered by insurance? Who do I go to? Another radiologist? 

    Update: getting my info, insurance will cover and I'll go for a second opinion next week! Thank you everyone for the wonderful support and help me understand how important it is to have a second opinion. 

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi D00056:

    I wasn't sure what you meant by "doctor" above. You could try to obtain a referral to a "breast surgeon" as a next step, if you have not already met with one. This should be a doctor whose practice focuses on the evaluation of possible breast cancers and treatment of breast cancer patients.

    As a very first step, see what your reports say. If you get your written records, and they contain a recommendation for some further action that has not yet been done, that action could be your next step (e.g., further imaging at this time or biopsy (Recommendation X)). Insurance should cover that, but it is always good to confirm in advance. You can then contact another institution with a breast center (confirm with your insurance that they are in-network), and say you would like to obtain a review of your imaging (mammograms, ultrasound) and all related reports, and that the paperwork contained Recommendation X , which you also want done. They will tell you what their procedure is, including whom you would see.

    If no recommended step has been omitted, call your insurance company to ask if any referral is needed for a second opinion and about possible coverage for a second opinion. Again, contact another institution with a breast center (confirm with your insurance that they are in-network), and say you would like to obtain a review of your imaging (mammograms, ultrasound), all related reports and a recommendation regarding same. They will tell you what their procedure is, including whom you would see.

    Do you have an NCI-designated cancer center/hospital near you? You could check with your insurance provider that the hospital and its staff are in-network, and then go to the web site for the NCI-designated cancer center/hospital and find the Breast Center or Cancer Center. There should be information there.

    http://www.cancer.gov/research/nci-role/cancer-cen...

    Hopefully others who may have gone down this road will chime in.

    BarredOwl


  • D00056
    D00056 Member Posts: 9
    edited September 2015

    I will say a prayer for you and hope for the best. What did you do? Are you ok now? 

  • D00056
    D00056 Member Posts: 9
    edited September 2015

    Actually it was a radiologist that read the report not a Doctor. My mistake. I have plans as you may have read, I'm going up to get my paperwork and films and then get someone to look it over next week. Also the radiologist said he didn't have any to compare with but when I asked for a copy, the person on the phone mentioned a mammo in 2009 and 2010. I would think that's plenty to compare to the several I had had done these past 3 weeks. 

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi D00056:

    Thanks for the updates that insurance will cover a second opinion and you have set it up.

    I ended up with bilateral breast cancer (Stage IA) and a double mastectomy (no reconstruction). No chemo needed. Glad the second opinion picked up the issue on my left, so it could be addressed. I am coming up on my two year "surgiversary" and am doing fine.

    Hope you get a good evaluation next week! Let us know how it goes.

    BarredOwl

  • Djabi53
    Djabi53 Member Posts: 184
    edited September 2015

    Hi D00056 - just wanted to share my situation in hopes it will help you find your way through yours. I'm also in a "watch and wait" situation - having bilateral diagnostic mammograms with magnification, and sometimes ultrasound every 6 months for 2 years. I'm told this is because I have no previous mammograms for them to compare - and that it is standard protocol. I am Birads 3. I am 62 - first mammogram was earlier this year. Was called back for bilateral diagnostic mammograms with magnification and ultrasound. The finding was bilateral faint calcifications. In February, I had a biopsy on one breast which came back fibrous cystic breast changes - no atypical cells. Because I have no previous mammograms for them to compare, they want me to do theirstandard protocol of every 6 months for 2 years. I have family history of b.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi D00056:

    Djabi53 is correct that six-month evaluations are sometimes appropriate.

    I guess the difference between you and Djabi53 is that you actually do have some older prior mammograms available for comparison. There may be other differences in your situations, such as density, which can complicate interpretation if you are dense.

    I think that you have some concern about the quality of the advice you are receiving. A second opinion is a good idea in such a situation. Whether the second opinion concurs or not is the question.

    BarredOwl


  • dismay15
    dismay15 Member Posts: 343
    edited September 2015

    I waited the six months instead of having an ultrasound done immediately. I should have gotten a second opinion included with that ultrasound. I ended up with a bmx - but first I spent six months worrying. Hopefully that will not be the case for anyone else, but I cannot pass up the chance to tell others not to make my mistake.

  • Kfarrands
    Kfarrands Member Posts: 1
    edited October 2015

    I think a lot of women are skipping mammograms because of the waiting and worrying. I am a 47 year old single mother of two, I have been getting my yearly mammogram religiously, but every year it's the same old thing. I get a letter saying they want another mammogram and ultrasound. This year I've been called back for an additional mammogram and sonogram on my right breast. The earliest I can get in is October 12th. It is very scary having to go through this every year. Has anyone else had this type of experience, is this normal??? I never see anyone else having to go back every year for an additional mammogram and ultrasound. It scares me so much it makes me want to not go for my yearly mammogram anymore.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Kfarrands, yes, it is not uncommon, unfortunately! Keep us posted.


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