New lump on the *good* side... feel like crying

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OK... if I hadn't been misdiagnosed FOR TWO YEARS this probly wouldn't even phase me...

There is a rather large (2-3 cm??) lump at 9:00.  My plastic surgeon assures me it's where the implant and alloderm meet (Ummmmm.... wouldn't that be a EDGE and not a SPHERE...???).

I nearly threw a hissey fit and got an ultrasound / mammogram scheduled, but this is bringing back ALL SORTS of horrible memories!!!

For two years I BEGGED to have my lump removed... after 3 US and 2 Diagnostic Mammograms, all the doctors told me I was being paranoid and this was "nothing"... Well... two years later it turned out to be BC that had crept into a node while I was being told to "stop freaking out". 

Now I have a HORRIBLE distrust of mammograms and US!  I feel the ONLY definitive test is a lumpectomy! 

How will I know THIS is nothing even if the US and Mammo are determined to be "clear"?! 

ACK!  I could cry I am so frustrated and scared...     :(

...I don't wanna live my life in constant fear!!! 



Comments

  • jgbartlett
    jgbartlett Member Posts: 112
    edited March 2013

    Hi Shellies, I know exactly how ur feeling. I found another lump a year ago & have seen both my onc & bs and have had 2 ultrasounds and they keep telling me it's nothing and doesn't need a biopsy. It feels significantly different to any of my other breast tissue and has continued to grow over this time. My next appointment with my bs is in April, every night I'm feeling it and measuring it from every angle - it is all consuming. I know I'm not the expert & they keep telling me it's nothing but I can't stop worrying.



    I don't know how to help other than to say ur not alone. Let me know how you go. xxx

  • Karen3
    Karen3 Member Posts: 307
    edited March 2013

    Hi Shellies

    I am so sorry you are going through this. I had similar - went to BS with new 'raised area' in opposite breast (including awful pain). I had been monitoring it for a month or so and it seemed to be changing / growing. They did a mammo and ultarasound and they found nothing. They would have sent me away had it not been for the fact I had already had BC in the opposite breast. So they did a fine needle biopsy and I had a seriously bad bleed as a result. They told me I would have the result within the week but they were sure it was 'nothing'. I saw my Oncologist in between the biopsy and the result and he told me that the mammo was 'normal' so I had no need to worry. I was really annoyed when I came away from that meeting because I KNEW something was wrong. I sensed changes that were not there before. Anyway, I went for the result but was told there was too much blood in the sample and that they needed another biopsy. My breast was seriously bruised so I had to wait another two weeks for another biopsy after which they did a core needle biopsy. Anyway, the biopsy showed high grade cancer which just happened to be invisible to scans (they call it occult cancer). The surgeon felt that I should have a bilateral mastectomy as it was only two years since my last bout of TNBC in the opposite breast. They also had no idea how extensive the cancer was because it was invisible but the cells they got in the biopsy were Grade 3 DCIS er- pr-. After my bilateral the pathology showed 4cm of DCIS. I often think that they could have easily sent me away saying it was nothing and ultimately I would have ended up with another TN IDC tumour. I ended up losing my breasts but I was so relieved that I did not need to go through chemo again. You are right - too much emphasis is placed on mammo and ultrasound. I am so sorry your doctors did not listen to you. They really should have carried out a biopsy. Mammos and ultrasounds miss 20% of BC. Plus, the medical fraternity need to know that we really do know our own bodies!

    I do feel and understand your total frustration and I am so sorry you have had to go through this. All the best with your treatment and lets hope you have seen the last of BC. XX 

  • Shellies
    Shellies Member Posts: 55
    edited March 2013

    Hey Karen 3!!!  Sheesh!  That's AWFUL!!!!  I fully support all the Breast Cancer organizations who stress the importance of mammos and US, but WOW!!!  I canno believe how many cancers have been missed!!!  I wish we could get the word out!!!

    Interesting... since I had had the double mastectomy... it was very easy to see this was a suture / part of reconstruction...  (Your story still makes me nervous... but this looked QUITE different from what I had had before!)

    I WILL share your story with my onc and gynocologist... thank you so much for sharing!!!  I'll definitely keep an eye on it!!!

    <hugs>

  • minxie
    minxie Member Posts: 484
    edited March 2013

    Why will they not do a biopsy? That's crazy! I went back to BS with a lump that everyone said looked like scar tissue... or fat necrosis... but they decided to biopsy it and it's a good thing they did because it was a local recurrence. I would think the doctors would rather be safe than sorry.

  • netty46
    netty46 Member Posts: 296
    edited March 2013

    I had same situation as Minxie.  But my BS immediately scheduled me for  surgery and there was the tumor everyone said I did not have. Plastic surgeon never listen to me he said necrosis yeah RIGHT!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    I'm so proud of all of you who have posted here about your committment to vigilance to watch out for things and to know your body!

    For everyone who has had this similar situation, please urge your medical doctor to order some type of surveillance, whether a mammogram or ultrasound.  If from this surveillance, there is no indication of a problem on the reports or they are indeterminate and you still have that intuition, and/or you feel there is a problem, request either a biopsy, or a diffusion weighted MRI.  The diffusion weighted MRI is starting to be done now in addition to the standard contrast and without contrast MRI.  The diffusion MRI is really accurate and it is often used for further determination and often, to prevent someone from having to go through an unncessary biopsy.  The MRI works by a weighted measurement of water travelling through the cells, and the mobility of the water is dependant on the cellular enviornment.  This new technology is really supposed to help rule out false positives and false negatives, reducing biopsies, and it has the ability to detect cellular changes early.

    I had an area of concern in Oct, and I was told it was "probably scar tissue", by both PS and BS, but an u/s was ordered for me.  The u/s was not real definitive of an answer, but the Radiologist said it did not resemble cancer, he thought maybe it was fat, but he himself ordered the mammo, and then he guided u/s himself one more time on me.  He said my BS would follow up with me.  I never heard from my BS (and I didn't call in), as the Radiologist felt certain it was nothing to be concerned about and he put me on a 6-month return visit.  But it was hard waiting, so at about 75 days, I called my BS's office and requested either a biopsy or an MRI, and they called me back and said the BS ordered the MRI.  It was the Radiologist who ordered this additional specialty Diffusion-Weighted MRI - I had it done in Jan.  The results came back as "no findings to suggest malignancy", but I was still put on a short-term interval to go back in for another u/s and/or mammo!  So, I went back to my PS, as he seemed to be the one who was most approachable at this point.  I also posted my question online to John Hopkins and they told me, that for closure, or peace of mind, it was very reasonable to ask for the scar tissue to be removed.  So this time when I visited the PS he said very willingly, he would remove it, and any other scar tissue inside of me, and replace my implants.  That is the surgery I had done last Wednesday, and the results from the pathology came in as non-malignant.  So in my case, it was non-malignant, but for someone who struggles with not knowing, and 'what is this' ... please continue going to each office until you can get someone who will order another test to get you an answer. For me, I went to the office that I felt was going to be the most flexible with my concerns. 

  • Shellies
    Shellies Member Posts: 55
    edited March 2013

    So I had my LEFT *lump* on the "cancer free" reconstructed side seen by my PS, mammogrammed, ultrasounded and was told by all that this is "a suture" and perfectly "normal"...

    CAN they biopsy this lump with the gummy bear implant RIGHT THERE?!?

    I was feeling really good, now I'm terrified after seeing your stories!!! 

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2013

    Shellies,

    I went through the same thing, but had good news.  Had a piece of something that PS and BS said was scar tissue.  I requested a mammo/us and then the MRI was brought into the picture, and that concluded that it was non-malignant.  I still decided to have the tissue removed completely in March, and the lab confirmed it was non-malignant. 

    Rather than put me through an unncessary biopsy, they utilized a new MRI called Diffusion Weighted Imaging.  It is often done now to preven unnecessary biopsies, and it reduces false positives/false negatives from the standard contrast/non-contrast MRI, although it's possible all 3 will be ordered together as that was the case with me.  It's a very accurate picture when all 3 are introduced together and Banner is utilizing this technology.

    Until you get closure on this, please try not to worry, but make sure you do get the final pieces in place to get closure on this for your own peace of mind.  Until then, it sounds like all evidence points to that being a suture. 

    Wishing you happy calming thoughts!

  • Shellies
    Shellies Member Posts: 55
    edited April 2013

    My PS says she knows EXACTLY what this is and is not at all concerned....

    Mammogram and US showed nothing...

    Oncologist is not concerned...

    I'M STILL SCARED!!!  (My original BC was seen by abt 8 doctors... mammogrammed twice... ultrasounded twice... and missed for nearly 3 years...)

    PS is SUPPOSED to be surgically fixing up some horrible looking ripples so I was gonna have her double check the lump at that time, but the insurance has us waiting...  wondering if I should throw a paranoid little fit and demand a biopsy / lumpectomy NOW?!?!



  • Shellies
    Shellies Member Posts: 55
    edited May 2013

    UPDATE!!!    ;)

    So I had a "push-up bra" implanted to smooth out the ripples and put the nipple in the right place... I begged the PS to check on this lump while she was there!!! 

    It ended up being a folded over piece of alloderm! 

    PRAISE GOD!!!

  • Morwenna
    Morwenna Member Posts: 1,063
    edited February 2014

    I was in the shower last Thursday, and found myself wondering when I would need to have my right (remaining) breast mammo'd. While I was soaped up, I decided to have a good feel for lumps. To my horror, I felt a smallish one on the medial side, and a larger, longer one on the outer upper quadrant (where my left had been). I also felt I had a palpable node slightly higher, toward my axilla. I sttod and whimpered like a child for a while. I have been on chemo for TN IDC since January, and am currently on weekly Taxol with three more to go.



    I saw my oncologist today as scheduled, and she thinks it feels like "fibrocystic changes". I was relieved that she didn't just say nothing to worry about, because I wouldn't have believed her. My left was "just a cyst" before it turned out to be a cancerous cyst!!



    Upshot is she's arranging an ultrasound. I'm not sure if I can have an MRI due to my powerport on that side.



    I feel tired and depressed rather than fretful and anxious. She's cancelled my treatment this week as I have been unwell with upset tummy since the last one.



    I feel I have no energy, and little fight left .... :(

  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited February 2014

    Shellies, where wad your lump at? was it on the side of your ripples? TIA

  • mamasixtaz
    mamasixtaz Member Posts: 319
    edited February 2014

    I too understand all the anxiety of finding another lump.  Went to see my MO in January for just a follow up 6month appt.  He did the exam and left the room.  When he returned he told me that he felt a lump under my left arm, my cancer side.  I am not even a year from bmx taking my tamoxifen and here we go again!  I was worried about my reconstruction as I just had exchange surgery in Sept of 2013.  I felt as if he had punched me in the stomach.  All the air in the room was gone, I had trouble breathing and just started to cry.  He quickly added he had left  to call radiology to see if we could get an US right away, but it was too late in the day and I would have to schedule one.  Was able to get in the next day for the US and the Radiologist was so good, reassuring me it was normal and maybe some scar tissue.  He did not feel a biopsy was necessary.  Will follow up in 3months to see if any changes occur.  It does hang over you but  I try to put it behind me and keep living for the moment.  Feeling for all of you who have had similar circumstances.  Hope we can continue to remain cancer free!

  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    mama - I felt a little lump in my armpit on the good side - it's so scary. I waited a couple weeks because I don't want to go in to be checked out every single time something happens. It didn't go away so I called & my onc had me come in right then. He said he's very sure it's just scar tissue, but to keep checking it and let him know right away if it gets any bigger. It's so had not to let things panic us. I'm glad they did your ultrasound right away. 

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