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frustrating breast lump
Hi! I have a breast lump that I first found 5 years ago, and I'm hoping to get some advice as I am getting so frustrated with the way I'm being treated.
I was 30 when I found it, and had FNA done that came back benign but atypical. To this day I have not gotten a good explanation of the presence of the word 'atypical' on the report.
At the first visit to radiology they put on a big display of not being able to even find a mass, and then making a big deal about how small it was and how it was "nothing." The initial ultrasound report showed hypoechogenicity with minimal through transmission; some internal flow possibly defining a hilum. no cystic component."
The lump was not a cyst or a fibroadenoma. It was (and is) hard as a rock. The FNA report showed "atypical, multiple clusters of "fairly bland" ductal cells, apocrine metaplasia present" - nothing too worrisome as far as I can tell. It said it was 4.9mm, so very, very small, but it is very clearly and easily felt by me, my gyn and even my husband.
For the next three years at the surgeon's advice my gyn and I monitored it and did manual exams. In 2007 we felt it had gotten larger so my gyn sent me for a mammo and ultrasound. Again, there was a big production about how they couldn't find it. The only thing i can think of is that the ultrasound techs don't use their hands to feel for it, they just use the probe so maybe they have more difficulty. I don't know. In any event, the woman doing the mammogram could feel it clear as day, but I again left after the ultrasound having been made to feel like I was wasting their time with my tiny benign lump. They told me "it looks exactly the same as it did in 2004." Funny though, the report showed it had grown from 4.9 to 9mm. So I guess it wasn't "exactly" the same. I saw the breast surgeon a few weeks after and she also made a production about how it was nothing and made reference to my age as well. (I look very young, though I was 33 at this point). It wasn't a matter of trying to put me at ease (I was already at ease). These folks are truly behaving as though I have no reason to be having this lump checked out or that there is no possible reason in the world for me to think I could have breast cancer. Again I was given the advice to continue with manual breast exams.
That was two years ago. In January of 2009 my gyn checked it and we didn't feel it had changed so we left it, but then I had to go back to her recently for another matter and she felt, as did I, that it definitely seemed larger and more prominent than it did even just 6 months ago, so she ordered an immediate mammo and ultrasound and a consultation with the breast surgeon. I had the mammo and ultrasound today and I see the surgeon next week. Again, today the mammogram tech could clearly feel the lump and the ultrasound tech made a huge production of not finding anything (she was in the wrong spot and I had to redirect her twice), and then when she had the radiologist come in to tell me it "looks exactly the same. It hasn't changed. At all." As if I were some hypochondriac feeling things that aren't there. (Apparently this time it is still 9mm, so in fact it hasn't gotten bigger, but it definitely feels different, to both me and my doctor). I actually was so frustrated this time I couldn't hold it in, so told the radiologist I was just following my doctor's orders and I don't appreciate being made to feel like I'm wasting their time. I wouldn't choose to spend 3 hours at the imaging center getting a mammogram and ultrasound just for fun.
Now I'm wondering if I should even bother going to see the breast surgeon, as I'm sure she's just going to tell me the same thing: It hasn't changed, keep doing manual checks. It seems like a waste of my time and insurance co-payment. My gyn is being vigilant, which I appreciate, but it's almost demeaning to be treated like a hypochondriac by everyone else. Should I just assume this lump is and always will be nothing and stop going through this process? I'm so irritated every time my gyn and I feel that the lump feels larger or more prominent, only to be told by radiology that we're both apparently imagining things.
Incidentally, I do believe this lump is benign, but I am frustrated at how they act like I'm not supposed to follow up or anything because the lump was already found to be benign. I am also not entirely without risk factors: I am 35 now and have not had children yet. I got my period at age 9, and I have been on the pill for 15+ years. I am 1/6th Ashkenazi Jewish (my father's side). I have very dense breasts even though I'm tiny (110 pounds), and this is the only lump that's ever been felt (I've never had cysts or anything that could be felt, and I do my monthly breast checks so I would know). And of course there's the fact that the FNA said atypical, and yet I still can't get anyone to tell me what was so gosh darn atypical about it, or even WHAT it is if it's not a fibroadenoma or a cyst.
I'm torn. If I insist on having it removed once and for all I'll really be treated like a hypochondriac. If I ignore and God forbid (extremely, extremely slim chance) it turns out to be something I will be kicking myself. But if I keep doing what I'm doing I'm going to have to deal with the "Why are you so worried about this little tiny thing? Jeez, it's so small you can barely feel it, I don't even know how you found it," blah, blah, blah. I'm curious what you all would do?
I was 30 when I found it, and had FNA done that came back benign but atypical. To this day I have not gotten a good explanation of the presence of the word 'atypical' on the report.
At the first visit to radiology they put on a big display of not being able to even find a mass, and then making a big deal about how small it was and how it was "nothing." The initial ultrasound report showed hypoechogenicity with minimal through transmission; some internal flow possibly defining a hilum. no cystic component."
The lump was not a cyst or a fibroadenoma. It was (and is) hard as a rock. The FNA report showed "atypical, multiple clusters of "fairly bland" ductal cells, apocrine metaplasia present" - nothing too worrisome as far as I can tell. It said it was 4.9mm, so very, very small, but it is very clearly and easily felt by me, my gyn and even my husband.
For the next three years at the surgeon's advice my gyn and I monitored it and did manual exams. In 2007 we felt it had gotten larger so my gyn sent me for a mammo and ultrasound. Again, there was a big production about how they couldn't find it. The only thing i can think of is that the ultrasound techs don't use their hands to feel for it, they just use the probe so maybe they have more difficulty. I don't know. In any event, the woman doing the mammogram could feel it clear as day, but I again left after the ultrasound having been made to feel like I was wasting their time with my tiny benign lump. They told me "it looks exactly the same as it did in 2004." Funny though, the report showed it had grown from 4.9 to 9mm. So I guess it wasn't "exactly" the same. I saw the breast surgeon a few weeks after and she also made a production about how it was nothing and made reference to my age as well. (I look very young, though I was 33 at this point). It wasn't a matter of trying to put me at ease (I was already at ease). These folks are truly behaving as though I have no reason to be having this lump checked out or that there is no possible reason in the world for me to think I could have breast cancer. Again I was given the advice to continue with manual breast exams.
That was two years ago. In January of 2009 my gyn checked it and we didn't feel it had changed so we left it, but then I had to go back to her recently for another matter and she felt, as did I, that it definitely seemed larger and more prominent than it did even just 6 months ago, so she ordered an immediate mammo and ultrasound and a consultation with the breast surgeon. I had the mammo and ultrasound today and I see the surgeon next week. Again, today the mammogram tech could clearly feel the lump and the ultrasound tech made a huge production of not finding anything (she was in the wrong spot and I had to redirect her twice), and then when she had the radiologist come in to tell me it "looks exactly the same. It hasn't changed. At all." As if I were some hypochondriac feeling things that aren't there. (Apparently this time it is still 9mm, so in fact it hasn't gotten bigger, but it definitely feels different, to both me and my doctor). I actually was so frustrated this time I couldn't hold it in, so told the radiologist I was just following my doctor's orders and I don't appreciate being made to feel like I'm wasting their time. I wouldn't choose to spend 3 hours at the imaging center getting a mammogram and ultrasound just for fun.
Now I'm wondering if I should even bother going to see the breast surgeon, as I'm sure she's just going to tell me the same thing: It hasn't changed, keep doing manual checks. It seems like a waste of my time and insurance co-payment. My gyn is being vigilant, which I appreciate, but it's almost demeaning to be treated like a hypochondriac by everyone else. Should I just assume this lump is and always will be nothing and stop going through this process? I'm so irritated every time my gyn and I feel that the lump feels larger or more prominent, only to be told by radiology that we're both apparently imagining things.
Incidentally, I do believe this lump is benign, but I am frustrated at how they act like I'm not supposed to follow up or anything because the lump was already found to be benign. I am also not entirely without risk factors: I am 35 now and have not had children yet. I got my period at age 9, and I have been on the pill for 15+ years. I am 1/6th Ashkenazi Jewish (my father's side). I have very dense breasts even though I'm tiny (110 pounds), and this is the only lump that's ever been felt (I've never had cysts or anything that could be felt, and I do my monthly breast checks so I would know). And of course there's the fact that the FNA said atypical, and yet I still can't get anyone to tell me what was so gosh darn atypical about it, or even WHAT it is if it's not a fibroadenoma or a cyst.
I'm torn. If I insist on having it removed once and for all I'll really be treated like a hypochondriac. If I ignore and God forbid (extremely, extremely slim chance) it turns out to be something I will be kicking myself. But if I keep doing what I'm doing I'm going to have to deal with the "Why are you so worried about this little tiny thing? Jeez, it's so small you can barely feel it, I don't even know how you found it," blah, blah, blah. I'm curious what you all would do?
You shouldn't have any problem getting a referral; even that "wonderful" Surgeon should offer you one if you prefer. My Surgeon certainly did ... it's usually standard procedure as it should be. If either refuses then get on the phone and find a Surgeon that takes "self referrals" .. they exist. Good Luck !
You have a right to get a second opinion, and the right to be referred to a different specialist any time your doctor suggests just one.( Many doctors mention 2 or 3, and ask if the patient has a preference.). Even though it may be uncomfortable to discuss this with your GYN, it is your health, not hers, that could be at stake, so be the wheel that squeaks. If she still won't cooperate, and you can afford it, it might be worth seeking out another highly recommened one on your own, just for your peace of mind, if nothing else.
I also wonder if there is a different breast center (for mammography and US) that you could try next time. No one should have to feel demeaned or treated like a hypochondriac by medical professionals because he/she is concerned about an unresolved medical issue.
Best wishes.
I also wonder if there is a different breast center (for mammography and US) that you could try next time. No one should have to feel demeaned or treated like a hypochondriac by medical professionals because he/she is concerned about an unresolved medical issue.
Best wishes.
Thanks again Japdip. I just need to clarify one thing: I didn't say I have the utmost confidence in the breast surgeon, I said my gyn does. She regards her as "top notch." Therefore I would have trouble getting a referral for a second opinion.
If atypical cells were found on biopsy then "benign" is an incorrect term to be using. I stand by my previous advice ... a second opinion. You say you have the utmost confidence in the Breast Surgeon that you have seen and are seeing but that is not obvious in your post as you are not comfortable with the opinions you have received. Second opinions are for your peace of mind and don't mean that your Dr.s are less than capable. Do whatever you need to do to put your mind at ease. Regards
Thanks for the response! Do you think it warrants being removed? The impression I get is that everyone is thinking, "Why are you bothering us with this lump when it was already FNAed and found benign?"
Unfortunately my gyn has the utmost respect and admiration for the breast surgeon I'm seeing next week and have already seen. In 2007 this surgeon did the whole, "Oh, this little thing," blah, blah, blah thing, and I think that's why in 2008 my gyn felt more comfortable letting it go and not sending me for another mammo/ultra that year. But now two years later she felt it had changed enough to be reexamined. I'm sure once she gets the report from the surgeon saying, "Oh, it's nothing," then in 2010 she feel comfortable just doing manual exams, because she really feels this surgeon knows her stuff. And I do too - my concern is whether I should keep doing mammograms and/or ultrasounds even though I'm treated like I don't need to do them at all. As I said, it's sooooooo frustrating!
Unfortunately my gyn has the utmost respect and admiration for the breast surgeon I'm seeing next week and have already seen. In 2007 this surgeon did the whole, "Oh, this little thing," blah, blah, blah thing, and I think that's why in 2008 my gyn felt more comfortable letting it go and not sending me for another mammo/ultra that year. But now two years later she felt it had changed enough to be reexamined. I'm sure once she gets the report from the surgeon saying, "Oh, it's nothing," then in 2010 she feel comfortable just doing manual exams, because she really feels this surgeon knows her stuff. And I do too - my concern is whether I should keep doing mammograms and/or ultrasounds even though I'm treated like I don't need to do them at all. As I said, it's sooooooo frustrating!
Personally I would gather all my films and have your GYN make an appointment for you with a Breast Specialist or Surgeon who has never seen you before. I would insist on removal of the lump and I wouldn't stop until the "little thing" was out and sent to the Pathology Lab. The squeaky wheel gets the grease .... SO SQUEAK !!!!
Good Luck.....
Good Luck.....
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