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I am 47 years old and have been having mammograms since the age 40. Unfortunately every mammogram I have had has showed a suspicious area and always required another ultrasound and required me to be seen every 3-6 months rather than every year. I have been referred to surgeons twice and had one biopsy which came back benign. On 7/5/11 I went in for my six month unilateral mammogram and the tech found a swollen lymph node in my right breast. A ultrasound was done immediately after and it confirmed the swollen lymph node.
I have been diagnosed with the following diseases for the last thirteen years: Lupus, RA and Adult Onset Still's Disease. I am on biologics and immunosuppressant drugs for these diseases. By being on the meds and having these diseases I have been told that I have a much higher risk of having lymphoma or leukemia or other types of blood cancers than that of a healthy person. (My rheumatologist told me this along with others.) I thought that since the tech thought this was a lymph node rather than a cyst or suspicious spot that I should tell her about my possibility of having a higher risk of having lymphoma's etc and so I did. After the radiologist read my tests she came back and told me that because of the risks that I shared with her the radiologist thought I should come back in 6 months to see if the lymph node had enlarged or changed in size. She said that if I had not told her this info that the radiologist would have suggested for me to see my surgeon again. I left the office confused and the more I thought about it, what she told me did not make sense. I would think if they thought lymphoma was a possibility that either way they would have referred me to a surgeon. I finally called on a friday afternoon and the radiologist had already left, but I did speak to a tech at their office to confirm what I was told and to let them know that it did not make sense to me. I was told at that time that I had this swollen lymph node since 2008 (which I was never told about until this date in July 2011) and that it had not changed in size since that time and that if I wanted to see a surgeon for a second opinion to feel free to do so.
One of the things that bothered me about this specific mammogram was that for ALL previous mammograms I always got a report from the office mailed to me telling me their findings in writing and their recommendations. I usually get it 3-5 days after my appt. I never got one and when I called and asked why, they cannot give me a valid reason. I then asked for them to copy to disc my mammogram and ultrasound and for a copy of the report they sent to my ob/gyn. I picked the report up and to my surprise I found that the following was on the report: (This is for the mammogram): On the mammogram in the axilla, an 11mm nodule is well circumscribed but has ENLARGED compared to previous studies. It is present back to 2008 and appeared to be a small intramammary lymph node. The ultrasound report said the following: At 10 oclock 11-12 cm from the nipple, an 11x6x9 mm hypoechoic nodule has central echogenicity, is well circumscribed and most consistent with a lymph node. This corresponds in size and location to the mammographic nodule. Other benign appearing lymph nodes are identified.
As you can see, the report claims that the nodule has grown in size since 2008. It bothers me first of all that they never told me about the swollen lymph node and then when they finally did 3 years later told me that it had not grown in size when the report clearly says that it did. Very, very frustrating...and I have to admit being as sick as I am, I have dealt with doctors, radiologists etc. a LOT and I do not have a lot of trust in many of them. Some are wonderful and some not so.
Anyway, my question to all of you is this: If you were in my shoes, what would you do? Any input would be greatly, greatly appreciated.
Tanya
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Dear Susan,
I would like to think if I let both the Radiologist office and my ob/gyn office know about my frustrations and concerns that it would concern them enough to make sure that it would not happen again, but I unfortunately do not believe that to be the case. My ob/gyn doctor is a very nice doctor, I like her a lot, but the only thing she does in reference to my mammograms is order them and refer me to a surgeon when needed. We have NEVER spoken about them at all. She leaves that to the surgeon and radiologists. From my previous experience it seems the radiologists and surgeons rarely agree with each other. One might recommend a biopsy and the other might not.
As far as the radiologist office, I did call to see why I did not get a report and the only answer I got was that maybe they were behind in sending them out. Well, my mammo and ultrasound was done on 7/5 and it is now 7/22 and it has never, ever taken this long so I doubt I ever get one and the tech on the phone honestly did not seem to care that I didn't.
I did call my ob/gyn to see what she thought I should do and was told by her nurse (as you can never get the doctor themselves on the phone) that if I had concerns to go and see the surgeon that did my last biopsy for a consultation. She didn't deal with these things. Go figure!
I guess my concerns and questions now are basically should I go see the surgeon now or take the advice of the radiologist and let this sit for another 6 months and just "watch" the lymph node. This lymph node has been here for 3 years and I just found out about it and with my having a ten times higher risks of having lymphoma etc, should I just go see the surgeon for a consultation. If you were in my shoes, what would you do? I don't want to have a unnecessary biopsy or incision, but at the same time why do I have a swollen lymph node in my breast that is growing and not shrinking in size? Usually swollen lymph nodes are caused by infection, inflammation, cancers etc. Wouldn't you think after 3 years the node would have shrunk in size rather than grow?
Thanks again Susan for your help and input.
Tanya
July 22, 2011 - 2:00pmThis Comment
tonya, first i would schedule a meeting with the surgeon, hosp administrator, and the radiologist who handled your mamogram. i would sit them all in the hosp conference room and discuss your concerns and feelings of being let down by the people your are suppose to trust. if you wait six months, then voice your concerns they will just ask"why did you wait to talk to us now". been there and done that. in my case it was an ultrasound on an ovary after having 2 c sections..."lets keep an eye on it for a fews weeks and see if anythhing changes" thats what i was told by the man i trusted, my ob-gyn. 5 agonising months later after seeing this thing shrink then grow, shrink and grow(every time it decided to grow it was bigger than the last time) it was to late, a hysterectomy followed....ofcourse i did have my 2 kids but we wanted more....follow your gut and your heart, get mad if necessary, but hold your head high and ask those questions.
July 24, 2011 - 1:51amThis Comment