Massachusetts Ladies Help Please

Anonymous

I need information on how to find a breast doctor that I can get an appointment with. I live in Northern Rhode Island and have MA insurance. I am at wits end. I have discharge from my left breast, I have had a mammo, u/s and mri all come back normal limits. I know that there are other tests that can be done to determine if this is something to worry about. Who does these tests? How do I get in to see a breast doctor. I wanted to get in with the Brigham and Woman's satellite in Milford, but when I call there they tell me that unless I have already been dx'd with cancer they can's see me.... ugh  But I did get my MRI there go figure. I was told to have a mammo in six months then six months after that have a mri and continue on like that. WHAT? Are they kidding? I want to deal with this now.

ADK

Hi,

 I am from MA, I think you need to start with your PCP to get a referral to a breast doctor.  Will they not give you a referral?  Have they just dismissed the discharge as nothing?  What are they saying that is?  I would think that if they can't answer as to what the discharge is, they would give you a referral to a breast specialist.    

What additional tests are you looking to do?  Yoou have pretty much done the full spectrum for not having any type of growth.  My route was that I saw a lump (yeah, saw it before I felt it), went to my PCP who sent me to a surgeon.  The surgeon removed it, then found out that it was cancerous, so I went back for second surgery and did radiation treatment.

 Sorry I couldn't be more helpful.  I hope you get what you need.

cmb35

Hi,

I'm from MA, and a Dana Farber/Brigham Women's patient. I'm not really sure what other tests there are besides those you've already had. Is there a palpable lump? Something that can be biopsied? Are you being recommended for high risk screening (mamm and MRI annually, scheduled so you have one test every 6 months?)

How did you end up with the tests you've already had done (PCP?) Sorry I can't be more helpful.

cmb35

You can make an appt at DanaFarber for a second opinion on your test results (i.e., mamm, MRI, ultrasound), at least I think you can, I went there for a second opinion, but I had a cancer dx, so I'm not sure if that's why they accepted me?

Anonymous

My PCP said that he will give me a referral to any doctor I wanted. Brigham and Woman's - Dana Farber just opened a satellite clinic down here in Milford. I went there for my MRI. I called them and asked about being seen by a breast specialist and the woman said that I needed to be dx'd with cancer before they can see me. So where does one find a breast doctor? If there is a problem with the breast who do I see besides my PCP, because truthfully I would trust a breast specialist over a PCP any day. There are only so many tests that the PCP can order it figure out what is going on.  So when they come back negative and the problem is still there I feel that I should see a specialist.  I am sick about this whole thing. I just can't walk away from this and come back in 6 months. I want to know know if there is pre-cancer or cancer cells in the discharge. When I say discharge I am not talking about a drip once a week, its a 24 hour a day occurrence. There is no lump according to the MRI.  I am considered high risk. My mother was dx'd with BC at the age of 38, in 1989 then again in 2001. Her younger sister was dx'd with BC at the age of 37 and lost her fight to it. Their aunt was dx'd with BC also. My mom and my sister both have the BRCA 2 gene. I have yet to be tested. I am 37. I feel like I must be going crazy. Am I a hypochondriac? Should I just forget this and go back in 6 months. I am starting to feel like an idiot since I dont have a lump but have discharge that seems to be coming from who know where in my body and out my left breast. It's not like I want cancer because I dont. I just want to know what is happening with my breast.

Dawnmrn1

Hi!  If I were you I would call BI or the Brigham and ask to speak to Judy Hirshfield-Bartek or at the Brigham and ask for their Breast Health coordinator and explain what you said in your last entry! You need to be seen! After you talk to them call your PCP and get a referral.  The nurses will help you and be your advocate. Just keep going after it and you will get results. Unfortunately, the schedulers do not always understand the situation. Good Luck, Dawn

Anonymous

Update: 

I talked to my doctor yesterday and he agreed that I should get seen by a breast specialist. So he is calling the Brigham's and Womans Hosp to get me in with a breast surgeon. He said that there might be some insurance issues of getting them to pay for the other testing since the mri dr said on the mri that no further testing required. Grrrrrr so now I wait to see what is next.

KAK

Hanaki, I'm from Boston & live in Rhode Island.  You can also call the Breast Health Center of Women & Infants Hospital in Providence at 401-453-7540.  Dr. Doreen Wiggins & Dr. Jennifer Gass are breast specialists & surgeons there.  Both are wonderful.  Also, Dr. Wiggins has office hours at teh Center for Ob/Gyn in Providence at 401-490-6464.  I called there when I needed a biopsy & they got me right in.  If you told them about the discharge, I'm sure they'd do the same for you.  Good luck.  Kathi

Anonymous

Hanaki--have they done a ductal lavage? Have you considered genetic testing (due to your strong family history)? I'm from mass origninally, but haven't lived there for many years, so sorry can't help with any specific docs or places.

Anne

Anonymous

awb- no not yet, is the ductal lavage the same as mammary ductoscopy? Yes I have considered the gene testing, I am going to a conference in Boston on 11/15 about the brac genes. 

Anonymous

Update...  after doing some research my doctors office has found only one hospital in MA that does a test to check the fluid that is coming from my nipple. Is this procedure that new? Has anyone had this procedure? My doctors office called the Brigham and Woman's and they said that UMass in Worcester does it, well they said that they don't and that the Faulkner Hospital in Jamaica Plain does. Well it turns out that they do, and to get this test, my doctor has to explain in detail why I should get this test. Thankfully he told me that he will do what ever it takes for me to get tested. I find it weird that of all the hospitals in Boston no one does this test. Any comments?? Anyone???

lissa71

I am not sure about the test you are talking about - but the first time I had discharge they did a glactogram/ductogram and found multiple pappillomas.  I am once again having discharge and no one is overly concerned but me.  I just saw a new surgeon last month and have another diag. mammo & US  scheduled for 1/2/09.  If you haven't had a ductomgram/glactogram yet - see if they can order that - it might provide a few answers. 

Anonymous

yes that is the test... did you get it in MA? if so where?

lissa71

No mine was in IL.  I thought it was pretty common of a test.  They did it before my excisional biopsy too.  The confusion might be because of the different names - call back and refer to it as a glactogram or ductagram vice versa.  My surgeon referred to it as a ductogram - but the hospital and radiologist called it a glactogram either way I know one is in my future again - and I am not looking forward to having it. 

Anonymous

Hmmmm I wonder why my doctors office was bounced around from a few major hospitals here in MA, all of them stating that they don't do that test... I am at the point now that I dont care where I have to go I just want the test. What was it like?

lissa71

Well-it was not fun.  I told my gyn on my last visit if I need another I want something to relax me first.  They put a catheter into your nipple through the duct that is leaking - then they put contrast into the duct and do a mammo with the catheter in your nipple.  It allows them to see if there are any oddities in the duct.  The first one was not as bad as the one the day of the surgery.  The mammogram machine broke with me in it while they were trying to do the wire placement and I already had the dye/catheter in.  The room filled up quickly with people trying to fix the machine - I have no modesty left.  By time we were done I was in tears and my surgeon even said iwhat I had just done was worse than the surgery was going to be.  Seriously though it is more uncomfortable and buring than painful....But I will do it again to find out what the discharge is - I'm just scared...What color is your discharge?  the first time it was clear - this time it is clear or yellow....Good Luck.  Let me know what you find out - so far all my imagining has been negative for cancer - with lots of other stuff going - cysts, microcalcifications, pappillomas etc. 

imalive

You should deal with it now.  Go see a Gynocologist for an evaluation.  If you have already seen one, get a second opinion.  I would see a female gyno rather than a man...that is just my preference based on my own personal experience.   You can also be evaluated by a general practicioner .   Call your insurance company and get a list from them as well.  Don't give up until you get answers.   good luck and god bless.  Let us know how you are. 

Anonymous

Lissa71- what a horrible experience. I can't imagine how that must of felt, how long were you stuck for? As for me the discharge is a mix of green and yellow with occasional red. So far I have had a mammo, u/s, and mri and all came back with in normal limits. I did some research last night and found that the hospital that I am going to go to for the galactogram is part of the Brigham and Woman's Hospital in Boston, a satellite cancer center. 

lissa71

It seemed like forever but probably about 1/2 hour or so.  My husband thought they took me straight to surgery becuase I was gone so long.....

Good luck with the test!  Let me know how it goes.

Makratz

Hanaki,

I haven't been following this thread for very long but wanted to chime in.  I am also from the MA-RI line - well close to both anyway!  I am 42 and had IDC this past June, went through all my treatments and surgery and am hopefully fine now.  When I was about 22, I had bloody discharge from my nipple and was sent to Faulkner Hospital for a ductogram.  It scared me and sounded horrible, but it really wasn't that bad. I was told I just had an unusual discharge, and not to worry about it.  There are so many wonderful doctors in the Boston area, you should make sure you see one.  If you want to send me a private message, I can tell you who I used.  Just make sure you take care of yourself.  Best of luck.