Please help...I need your opinion..soon

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IndianaMomOf3
IndianaMomOf3 Member Posts: 26
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello, Ladies.   Here is my delima.  4 yrs ago I noticed a discharge in my right nipple (green).  My yearly mammo was normal and Dr said it was normal and not to worry.  Discharge continued.  2 yrs later, my left nipple began the discharge.  was told again, it was normal, may have it forever.  6 months ago one duct began a clear discharge.  Went to get my mammo, (through the YWCA), then a diagnosis mammo (due to overlapping tissue), then to a surgeon to follow up, who for the first time ever, checked my discharge for blood.  It was possitive.  He sent me to US which showed nothing, but I do have a couple of "really big ducts" so says the tech.  Followed up with BS who said everything "appears" to be normal, but when asked, he had no answer for enlarged duct or blood in discharge.  I told him I wanted a 100% dx and I am not willing to play around (my mother, at 51 had stageIV breast that affected 21/23 nodes).  He said he will get me into a ductography or maybe remove ducts.  I told him I was willing to do what I had to to ensure that I was healthy.  Well,  I call today to schedule next proceedure and am told I will be doing an MRI. 

Here is my concern:  will a MRI be enough?  Can cysts/tumors hide from MRI's like they have been known to do with mammos and US?  Do I insist they culture the discharge to check for abnormal cells?  Do I push for removal of ducts?  How long do I have to put up with this discharge w/o knowing what is causing it?  What about the blood? 

Does anyone have a similar story to help me decide how hard I should push before looking like a hypocondriac (sp)?  When do I say, ok, thank you, I believe you that it is all ok?

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2011

    A breast MRI CAN detect almost anything.. there was a great deal of talk several years ago about them finding too many "false positives' which would lead to a biopsy... but as the tech and radiologists have become more familiar with the new equipment (not new any longer) there are more and more reason to us MRI's INSTEAD of US and mammo.'s IMO.  I had a clear mammo, US and digital mammo the same week that my breast MRI was done and all BUT the MRI were clean.  The breast MRI showed moderate to high grade DCIS (I was lucky) and I went forward from the dx to a biopsy and on to my treatment.  With your family history you should not only have a breast MRI but a genetic counseling with BRCA testing IMO.  I hope everything comes back clean - good luck!

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  • IndianaMomOf3
    IndianaMomOf3 Member Posts: 26
    edited October 2011

    Thank you, Deirdre.  I just got off the phone with my coordinator and she said that the Dr has told them that he wants to do an excersion (sp) but that he is most likely using the MRI as a map to do so.  I don't know if the YWCA will pay for the genetic testing you mentioned.  I have no insurance and they have been my saving grace.  Now, all I have to do is wait for my monthly to start so I can schedule the MRI. 

    I just want to make sure there is no chance of BC, and if it is, get it treated ASAP.  I have 3 beautiful children and a loving, devoted husband who needs me to stick around for a long time.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2011

    I totally get it IdianaMom...  We want to be here as long as possible for our family!  Take care and I wish I had someone else to point you to that might help you out financially for the breast MRI's but I honestly don't.   With all the "think pink" stuff all over the world you would think that some of that money might go towards women without insurance, but the few I checked use their monies entirely for research - don't get me wrong that's a good thing but it sort of leaves individuals like yourself out in the cold sometimes!!  Take care and touch base with us afterwards!!

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear Deirdre1 - My wife has just been diagnosed with DCIS in the right breast based on the screening mammogram and biopsy results.  Although the mammorgram on the left breast looked normal, I insisted (or I encouraged my wife to insist) that they do an MRI.  The MRI of the left breast came back with "abnormalities".  A biopsy confirmed DCIS in the left breast.  My wife will have a double mastectomy on October 14th.  So, I can only say that an MRI can potentially provide more detail and value for your situation.  It certainly helped my wife discover that she had DCIS in her second breast and helped detect something earlier that was missed by the mammogram.  In terms of the other tests, you should demand that they do everything.  More is better when it comes to diagnostic tests for breast cancer or possible cancer.  I hope this helps.  Good luck.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2011

    Blair:  Good for you!  It always amazes me how compliant we all are when it comes to our lives... I understand being curteous and polite, but when it comes to our health too often we have to push the buttons to makes things happen.  We hope of course that the medical profession will do that for us.. and I imagine many of them TRY but the insurance companies tie their hands so much that they can only do so much.  That leaves US to address, push for, insist upon the proper tests.

    Take care!

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  • IndianaMomOf3
    IndianaMomOf3 Member Posts: 26
    edited October 2011

    Thank you all so very much.  Makes me feel much better about the choices I have made.  I will continue to plant my feet until I am confident there is a 100% dx.  Thank you Thank you Thank you!

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  • tarry
    tarry Member Posts: 156
    edited October 2011

    Indianamonof3: both the breast surgeons I consulted, with the second a well- respected md anderson surgeon, said that an MRI would tell us what the discharge meant about the extent of the cancer.

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  • IndianaMomOf3
    IndianaMomOf3 Member Posts: 26
    edited October 2011

    Thank you Tarry.

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  • SeptemberP
    SeptemberP Member Posts: 4
    edited October 2011

    My DCIS was detected from bloody nipple discharge through MRI. I went to my Gyn complaining about the bloody nipple discharge. I had a mammogram done, an ultrasound, a MRI, and another ultrasound by the BS. The mammogram did not pick up anything but two different doctors was able to show me in the ultrasound which milk duct my discharge was coming from.

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  • luckyjnjmom
    luckyjnjmom Member Posts: 140
    edited October 2011

    I had mammo, MRI and U/S in rt breast when diagnosed IDC stage 1 in left breast. Right breast was clear by all of aforementioned diagnostics - but I could feel something there - right under the nipple - not a lump - a sensation - so I had the rt breast removed prophylactically. Pathology report showed DCIS on the right breast. The diagnostics aren't 100% - unfortunately - listen to what your body is telling you and trust your intuition.

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  • determinedmom
    determinedmom Member Posts: 276
    edited October 2011

    Don't have a similar story, but was dx w/ DCIS rt breast, had MRI left breast to help me decide my options as I had previous biopsies, all negative.  The MRI showed 2 highly suspicious areas of cancer so I elected to have double mastectomy.  Even though the path report came back negative for cancer, there were definitely signs of early cancer so I'm happy w/ my decision.  Is it possible to get the BRAC testing?  It's a blood test one can take w/ family history to see if you carry the gene.

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  • velutha
    velutha Member Posts: 102
    edited October 2011

    @Indiana:  Can you go to the cancer center in Indy?  They may be able to help you get testing/biopsies/surgeries without insurance.  Most large academic centers have programs for uninsured patients.  I know our cancer centers here will make sure any woman who walks in the door get treated, regardless of ability to pay.

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  • DJL
    DJL Member Posts: 84
    edited October 2011

    My MRI is what found my cancer. I had a mammogram and they saw something on my right breast. I had a biopsy and it came back negative. About five days after my doctor had called to tell me everything was fine, he called back and asked if I woud go get a MRI if he could get my insurance to cover it. He said, "I just don't feel good about things." I had my MRI and sure enough I had cancer very deep, next to my breast bone and the MRI found it!

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  • kymberlimc
    kymberlimc Member Posts: 10
    edited October 2011

    I was diagnosed with DCIS about a year ago.  Both my mammograms and ultrasounds had come back normal.  It was only in the MRI that the docs were able to detect the DCIS, later confirmed through lumpectomies.  I'm a huge proponent of MRI's for early BC diagnoses.

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  • IndianaMomOf3
    IndianaMomOf3 Member Posts: 26
    edited October 2011

    Thank you.  My husband and I have decided to go ahead with removal of ducts and will insist lump is either biopsied or removed

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  • DebiMetz
    DebiMetz Member Posts: 8
    edited October 2011

    Hi Deidre - I see in your post that you were dx'd with DCIS, what did you choose as your treatment?  I just went thru a lumpectomy and was planning to have radiation next week but the path. report showed the DCIS was pretty wide spread t/o my left breast.  I am now considerin a mastectomy but am worried about the right side because the DCIS did not show up in the initial mammogram but only thru an u.s..  Everyone thought I had just a small amount and not until surgery did we find out otherwise.  Any opinions on what to do?  I did just have an MRI on both sides.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2011

    DebiMetz:  Yes I did have true DCIS grade 2/3..  Originally I was going to have the lesion removed and do a "watch & wait".  We were going to do a 3 month recheck with an additional breast MRI.. however, my situation is a bit different because it was my father that died from breast cancer.  This seemed to panic my doc's because there really isn't enough information on male breast cancer and how it might effect a female member of the family.  I was BRCA negative, I had my tissue sent out to another facility (Vanderbilt) to verify the findings.  So because (I believe) my doctor's feared that a male breast cancer might be more aggressive than a female bc they started to push for bi-lateral mastectomy.. some of them even suggested that I have my ovaries and uterus removed as well.. Long and short of it was that although I was able to be very clinical with my choice of treatment but when the doc's relayed their fears to me I gave in to it and did have a bi-lateral mastectomy.  In retrospect and because of the incredible loss that a mastectomy creates (not only within myself but other women I have spoken to) I believe I would have only had the breast with the DCIS treated and I would have tried to have a lumpectomy but if I had chosen a mastectomy I would have only applied that to the breast that showed clear DCIS.  IF I were going to do this again I would add a therapst to my list of specialists - the goal of a therapist is to help you hear you own voice.. and when it comes to cancer EVERYONE has an opinion which can e very confussing.  It is so very important that YOU hear your own voice because that will help you come to terms with the loss.. Oh and I would also do a nipple saving mastectomy if I was going to do a mastectomy - having your original nipple will help with your recovery and acceptance.. Good luck and if you would like to know anything else please don't hesitate to ask!!! Best, Deirdre

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  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited October 2011

    I had a fairly widespread DCIS in my left breast which ruled out the lumpectomy for me for cosmetic reasons.  I also have calcifications and/or things that the MRI flagged in my right breast -- maybe the calcifications. I confess that I never understood the MRI report and concluded the whole thing was a colossal waste of time and money.  My breast surgeon suggested and was willing to do the double which I was having a hard time getting excited about.  I had the right side biopsied and got the BRAC testing -- both negative.  I couldn't come up with a good reason to cut off the apparently healthy breast so I didn't.  I think it was critical to my decision that I know with a fair degree of certainty that despite the number of mammograms, biopsies, sonograms, MRI's (?!) the future holds for the right breast, I am not temperamentally one who will stress a great deal about the outcome of those tests.  I think there are women who would look at their remaining breast as a time bomb strapped to their chest, and, for them, the double is the right choice.

    I had a mastectomy on that breast a week ago today -- immediate reconstruction with a tissue expander.   The worst part so far are the surgical drains.  I am on the verge of ripping them out myself.  I do NOT consider them a small matter or a nuisance.  For me, they are a big damn deal.  

    I have yet to look at the incision and am in no tearing hurry to do so. The plastic surgeon reported that the left is about half the size of the right.

    My surgeon does not do nipple sparing mastectomies because in her opinion, plastics can match the nipple to where you can't tell the difference, sensation is lost in any event, so why take the risk.  I do know that other surgeons in the area do do nipple sparing mastectomies, but by the time I reached that issue - which I had no idea was an issue until I talked to the plastic surgoen -- I was too far down the path emotionally to start over.  

    There is a LOT to be said for knowing the right questions to ask early on.  I didn't and wish I had. 

    I am weak kneed at how close I came to doing both sides.  I cannot IMAGINE how depressed I would be right now, completely helpless with twice the number of drains.   DId I mention I consider the drains a HUGE deal?  

    When he gave me the diagnosis, my radiologist told me there is no right answer.  I had no idea what he was talking about -- -- of COURSE there is a right answer.  I was astonished to find that a great deal was left up to me, which, seeing as how I haven't been to medical school and all, strikes me as a flaw in the system.  

    I second Deirdre -- talk to a therapist.  Have one on board for the whole roller coaster.  I'm all over the place emotionally -- I look forward to those appointments like you wouldn't believe.   

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited November 2011

    Oh I wish ps wouldn't promise to match the new nipples to "where you can't tell the difference" and honestly I suggest EVERYONE look at having nipple sparing if it is available in your area.  I have a fairly ok set of new reconstructed nipples... but after a mastectomy the mind keeps looking for the familiar nipple and it took years for me to become accustome to the new me...  Even without the feeling I believe that a mastectomy is accepted better by the mind if the nipple is still there... i hope you do get a great outcome but if anyone is reading this and making the same decision - PLEASE look into nipple sparing as a way for you to get through the mastectomy and get on with your life as soon as you can... Take care, Deirdre

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited November 2011

    Deirdre, I agree about the ns. I asked the first ps I saw for ns. He said it was up the the breast surgeon and how close the cancer is to the nipple.  I am asking for it..Right now I am really struggling whether to do a uni or bilateral mx.  I'm leaning toward the blmx due to dx in both breast...although the left was idc mucinious type, which doesn't worry me that much. My mind is having a hard time accepting the idea of losing my breasts or breast. The plastic surgeon said the reconstructed breast will not look like my natural breast. He said it will look different and the my own tissue (breast) will eventually age, or sag where the reconstruction breast will always be firm and pirky. The visual picture of one pirky breast and eventually a sagging breast alone maybe the deciding factor. And after 4 years the wait and see approach was beginning to wear on me. I dreaded every mammogram. Only two in the last 4 years came out clean. I'm really ready to move on from looking over my shoulders for a possible recurrence.  I'm ready to move on from thinking about cancer...but can I now that I'm dx with idc?

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  • Snobird
    Snobird Member Posts: 593
    edited November 2011

    After 4 yrs post lumpectomy and rads in my left breast I started to have a small clear discharge from my nipple from that breast. My BS said that it was nothing and I shouldn't worry. The discharge was very little spot that showed up in my bra sometimes. It went away for awhile and then came back. This time it was tinted a yellowish color and I noticed that the very tip of my nipple looked a little different where the milk ducts come out. I was scheduled for my 6 months chec up in a month but I called and moved up my appointment. When I saw the Dr. He still didn't think I had anything to worry about but I requested a biopsy of the nipple tissue for my piece of mind and he agreed and did the sample right in the office. 4 days later I got the call that I had Paget's disease of the nipple and that I had a two week window to to get a mastectomy. Listen to yourself. I did and it saved my life. I am now almost one year from diagnosis, BMX with recon via DIEP FLAP (non nipple sparing) and getting ready for stage 2 recon. Oh and by the way, nothing showed up in several mammograms, ultrasound or MRI. Only the nipple biopsy proved that I had cancer. My recurrence was only found in the nipple (DCIS) and I had no lymph involvement and clean scans. I am very thankful that I didn't have nipple sparing procedure, which was offered, because the post surgery pathology showed that the only cancerous cells were located in the nipple ducts. The rest of the breast was clean.

    Pressure the doctor for an immediate biopsy of the ducts. Time is the enemy with Paget's, Disease so please don't hesitate.

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