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All TopicsForum: High Risk for Breast Cancer → Topic: How do you get a specialist to take you seriously?

Topic: How do you get a specialist to take you seriously?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Feb 22, 2011 09:48AM

FlyingSolo wrote:

I am a 31 year old female with a personal history of childhood leukemia.  Both grandmothers had breast cancer.  My mother died suddenly at age 55, so I do not know her genetic disposition for the disease.  Over the past 4 months, I've experienced a litany of what I originally thought to be unrelated symptoms and illness - constant acute colds/sinus infections/flu, severe bruising, fatigue, abnormal sweating, etc.  Last week, I discovered a walnut size, easily palpable mass in my breast.  My GP sent me for diagnostics - mammogram with ultrasound and biopsy.  The mammogram clearly showed the mass (density), but the ultrasound tech was unable to find get a clear picture.  (I'm rather small and my ribs were interfering with the picture.)  Although he had no problem locating the palpating the mass, the doctor dismissed my concerns, talked over me when I tried to emphasize my symptoms and family history, and told me to come back in 6 months for a follow up mammogram, but that there was nothing more he could do without a clear ultrasound image.  He added that I could always have my GP "stick a needle in it" since it was easily palpated.  I'm now trying to get into another specialist, but I'm getting the runaround even trying to make the appointment.  My GP and I both believe this isn't a "wait and see" situation and probably should be diagnosed - either way - as soon as possible.  However, none of the specialists seem to be overly concerned.  How do I approach the specialist(s) to ensure that I get in for the appropriate testing sooner than 6 months from now?  I'm very emotional right now and don't want to be so aggressive as to make them even more unresponsive.  I really appreciate any feedback anyone has.

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Feb 22, 2011 10:07AM NatureGrrl wrote:

I don't know that I can be much help except to say your GP should be able to push for an appointment for you.  I know the first mammogram I had after finding my lump, the radiologist told me it would be "weeks" before I could get a biopsy  because they were too booked up, although she was sure I had cancer; I went upstairs to my mother's oncologist's office and within hours had an appointment for a biopsy a few days later (with the same radiologist who told me they had nothing available).  Ask your GP if s/he will intercede on your behalf.

Your GP can possibly aspirate it, and as awful as it sounds, I had a lump (cyst) aspirated once and it was literally just a very mild pinprick and not painful.  So that might be another option to get you more information quickly.  It's not a biopsy but depending on what they pull with the needle at least you're armed with more information

Also -- be a squeaky wheel.  Be kind and polite but persistant in trying to get an appointment. 

And, don't panic... it's hard not to, I know, but take some deep breaths and don't let your mind wander too far until you actually know what you're dealing with.  Others will probably have some more helpful suggestions.

Best of luck and a warm hug. 

Carol, living out loud! http://fire-of-our-hope.blogspot.com/

Dx 4/2009, IDC, Stage IIa, Grade 3, 0/17 nodes, ER+/PR-, HER2+
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Feb 22, 2011 10:27AM Letlet wrote:

I would suggest obtaining the actual reports of your mammo and sonogram and try to determine why the radiologist did not biopsy it. There may be more information in your reports. However if your reports are a BIRADS 4 score that means that there is something suspicious and a biopsy is recommended.

So because the ultrasound tech was unable to get a clear picture, they didn't do a biopsy and you're supposed to wait and see for 6 months??? Unbelievable. I wonder how they would fare if it were the other way around.

You don't even need to convince them with family history because bottom line, you have a mass present upon palpation and seen on mammo and your GP is ordering a biopsy. Perhaps you can take your mammo films, ultrasound films/CD and your actual reports (not the letter they give you) to a breast surgeon. Sometimes they will do the biopsy.

NatureGirl is right, be the squeaky wheel but nicely. I am 31 too with absolutely no family history of breast cancer yet I was diagnosed last August. Even my breast surgeon told me it could be lumpy or fibrocystic breasts when I pointed to him the hard area in my breast. Nope it was cancer. Not trying to scare you but just empasizing that becaue of our age many in the medical field dismiss our concerns because we are "too young". I hope that you will be able to get that biopsy and it will be benign. Take care.

Dx 8/27/2010, IDC, 3cm, Stage IIIa, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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Feb 22, 2011 01:12PM FlyingSolo wrote:

Ladies, thank you for your insight.  It's been a rough go over the past week, and it helps to hear it from people who have gone through the process. 

Letlet, I'm painfully aware that doctors are quick to dismiss those of us who don't fit their preconceptions of who "typically" gets breast cancer.  Stories like yours are the reason why I know I need to take care of this now rather than later - and why I need help developing my strategy to get that accomplished.

Now to make some phone calls... :)

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Feb 23, 2011 09:19PM MomOf3inAL wrote:

There is such a huge difference in what doctors choose to do.  My recent mammo/us confirmed that there was a mass that I had found on my own.  From all appearances the radiologist was VERY confident that it was benign, yet my gyn still sent me to a breast surgeon who prefers to biopsy or take it out rather than wait and see.  there was no argument.  You should easily find a surgeon who is willing to do that exact thing.

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Mar 5, 2011 08:29PM mawhinney wrote:

At what type of facility did you have your testing?  Some radiologists review only a few breast imaging tests a year. You want a radiologist that has a special interest in breast health and one that frequently reviews breast imaging.  Also try to locate a nationally ranked cancer center and have them review your case.

Did the radiologist that felt your lump but could not get an image have you lay in one position or did he have you lay in different positions?  I was sent for a biopsy of a questionable spot that was seen by one radiologist. The radiologist that was doing the biopsy could not find the spot.  He was ready to give up when I remembered that the first radiologist had me laying in a slightly different position. As soon as I changed positions, the spot was located.  It turned out to be DCIS!

Dx 5/18/2008, IDC, <1cm, Stage Ib, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 7, 2011 09:45AM FlyingSolo wrote:

I had my original testing done at a mammography and breast health center - which made me all the more upset.  However, I had an appointment at the Cleveland Clinic last Friday.  The docs were amazing - had me lay on my side - and had no trouble whatsoever finding the mass on ultrasound.  The doctor performed a CNB (ow!) because she couldn't get a sufficient sample with FNA.  Now it's just a waiting game until the results are in...  I think of every aspect of this experience, the waiting is the worst!!