MRI came back as seeing something in both breast. Possibly IBC.

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Samantha_Marie
Samantha_Marie Member Posts: 1
edited January 2021 in Waiting for Test Results

I have been passed around from GP to a breast specialist. From my first doctors visit they told me they thought i had inflammatory breast cancer. Im still getting tests done. I just had a breast mri the 23rd of December. Called me the next day set up another sonogram on jan 14th and another oncologist visit jan 18th. They are still trying to decide as my discolored breast is getting worse. I did one biopsy already it came back diagnosed with scleroderma and tumid lupus.

It wasnt mri guided. It was a small piece of breast tissue on the side of my right breast because she tried a sonogram before doing the biopsy but my breast tissue is too dense she said she couldn't see either lump but felt them so she ordered a breast mri after i did my one biopsy that she had to guess on where to do it at. The biopsy said negative for cancer there at that spot. But i had an mammogram come back abnormal showing something and they called me the next day after my mri telling me i need to set up ANOTHER sonogram because it shows something in both breast. This is why im worried. My breast hurt so bad and she kind of acted as if she didn't know much about inflammatory breast cancer herself and shes oncologist. I do know this type of breast cancer my GP thinks it is is very rare and very aggressive. Its been since dec 07th ftom my first visit. I wish iwas a doctor myself. Being passed around and guessing isnt good for my situation. My questions are can she miss the cancer if she doesnt biopsy the right spot? Also anyone have bad breast issues with scleroderma before.? My breast are going thru hell right now. So uncomfortable, soar to touch, itchy sometimes. I been sleeping alot and feeling like my bodys been hit by a train. Is this a scleroderma symtoms? Thanks so much for writing to me . makes me feel a lil comforted

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited January 2021

    Samantha,

    IBC is very uncommon. Having bi-lateral IBC is almost unheard of. Have you had a punch biopsy? This is usually how IBC is diagnosed, not mammograms, and often done by a dermatologist. Can a biopsy miss something if it’s not sampling the right area? Yes, of course! A skin punch biopsy samples the suspected area for IBC, because IBC is generally quite visible and progresses quickly in a noticeable way. I am by no means an expert on IBC, but I hope this helps. I have no info on scleroderma or lupus. Since you do have a confirmed dx of scleroderma and lupus, has treatment for those conditions changed things at all? Take care and I hope others will chime in.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited January 2021

    Samantha_Marie I'm soooo glad you came to breastcancer.org! I'm assuming you are the one I met on the scleroderma site? Either that or there is an uncanny similarity in background.... I hope you've visited the IBC forum here to gather some info on inflammatory breast cancer. I'm hoping you will get more replies on this thread as more time passes. Scleroderma increases cancers in people and breast cancer is the most common type of cancer in scleroderma (at least for women - not sure about men). I do not know about lupus.... They are cousins tho not the same too... Again I'm limited in my knowledge of IBC though would still think they would want to biopsy (meaning stereotactic or MRI-guided?) the two lumps. It sounds like they did not find IBC in the skin biopsy. I'm wondering if maybe a MRI-guided biopsy might be scheduled pending the January 14 MRI results? Maybe a question to ask b/c if so that may boost your confidence in your current team...?

    I am concerned you have been at this diagnostic puzzle since Dec. 7 with still no idea from a breast cancer perspective what you're dealing with, esp. with all the pain and discomfort you're in. I'm not sure where you are from though if in the U.S. I would recommend going to a dedicated breast care center while keeping that Jan. 14 MRI date. Canceling may cause additional delays. It is possible the scleroderma and lupus diagnosis caught them so off guard though I have scleroderma and that does not negatively impact breast cancer diagnostics.... possibly treatment... tho not diagnostics... You're one month in and still don't have any idea what is going on breast cancer-wise. If they didn't suspect it at all that wouldn't be an issue though they do suspect it.... I'd also recommend starting to get copies of CD (MRI) and at least reports in case you do go for a second opinion at some point. Keep copies for yourself too.

    I'm glad you came to breastcancer.org!!!

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited January 2021

    I thought I should add this.... I've been so focused on issues related to your evaluation for breast cancer diagnosis that it did not occur to me to inquire if you've had blood testing (ANA by IFA vs. ELISA and antibody testing) for scleroderma. This helps determine type of scleroderma. I'm assuming you have some type of systemic sclerosis (limited or diffuse) vs. localized, morphea, en coupe..... This is important for your scleroderma treatment b/c antibody type helps point to risk for various organs (or less risk) and helps determine screening measures for those. Additionally I got to thinking skin thickening due to scleroderma may be why they were having so much difficulty getting the skin biopsy. I was thinking more in terms of how inflamed and irritated that area of your breast is in general terms and that led to skin difficulties.... Diffuse scleroderma tends toward wide-spread thickening of skin and earlier organ involvement. Limited lends itself to more limited skin involvement (hands, face especially) and slower progression of organ involvement (when this is an issue - it isn't for everyone) over time. Antibodies helped determine limited and diffuse as well. Not always - I have the diffuse antibody though limited skin involvement and more organ/vascular involvement. I'm a rare within rare case though....

    Also if you haven't already made contact with a scleroderma center that is critical if there is one near you. Many have to drive some distance - I drive 4 hours one way. Not only is this important for your scleroderma evaluation (breadth of involvement and knowledge of baseline and annual screenings) though also for breast cancer treatment considerations. General rheumatologists rarely see a case of scleroderma - it is very rare. If they do their experience is very limited. Scleroderma clinics generally include rheumatology, pulmonology and GI sclero experts at the very least and then have others with expertise or specialty experience in scleroderma such as cardiology, wound care, derm, neuromuscular, etc. My rheumatologist was critical in conveying to me and communicating with my breast surgeon and oncologist, including about NO radiation.... you will see some conflicting studies on scleroderma and rads with breast cancer.... If you have any heart or lung risk due to sclero you definitely want to avoid rads in your chest area if at all possible. You may want to avoid it anyways due to heart and lung risks with scleroderma in general.... If you go to www.scleroderma.org and look under "Resources" - it's a little clunky - it will take you to a U.S. map if you're in the U.S. where you can click on a state and find nearby scleroderma centers. If you're not in the U.S. you can ask on the Inspire sclero site and maybe on the national website as well.....

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2021

    Here is my take and the questions I would have:

    “I have been passed around from GP to a breast specialist. From my first doctors visit they told me they thought i had inflammatory breast cancer. Im still getting tests done."

    Who thought you might have IBC? Your GP or the breast specialist?

    “I just had a breast mri the 23rd of December. Called me the next day set up another sonogram on jan 14th and another oncologist visit jan 18th."

    Are you referring to the breast specialist as an oncologist? Usually what are referred to as breast specialists are breast surgeons or breast surgical oncologists. The radiologist doing the studies (and biopsies) would be an interventional radiologist. Not an oncologist. Radiation oncologists are the ones who provide radiation treatment

    “They are still trying to decide as my discolored breast is getting worse. I did one biopsy already it came back diagnosed with scleroderma and tumid lupus. It wasnt mri guided. It was a small piece of breast tissue on the side of my right breast because she tried a sonogram before doing the biopsy but my breast tissue is too dense she said she couldn't see either lump but felt them so she ordered a breast mri after i did my one biopsy that she had to guess on where to do it at. The biopsy said negative for cancer there at that spot.. "

    Does the surgeon believe the appearance of your breast is due to scleroderma/lupus? Was this a skin biopsy? Was this what that determined you have scleroderma and lupus?

    “But i had an mammogram come back abnormal showing something and they called me the next day after my mri telling me i need to set up ANOTHER sonogram because it shows something in both breast. This is why im worried. My breast hurt so bad and she kind of acted as if she didn't know much about inflammatory breast cancer herself and shes oncologist. I do know this type of breast cancer my GP thinks it is is very rare and very aggressive."

    Just because the mammogram is unclear but sees “abnormal" things doesn't mean whatever it shows looks like cancer. The additional ultrasound is just to see if the MRI findings might be correlated by ultrasound, or if necessary, biopsied by ultrasound rather than by MRI. Much simpler and more comfortable. Could be too that the MRI findings look benign and that they are trying to confirm that by ultrasound. To me, it doesn't sound like the specialist thinks this is IBC, or is uneducated about or unfamiliar with IBC. It sounds to me that instead she believes that the skin issues are related to the autoimmune disease.

    “Its been since dec 07th ftom my first visit. I wish iwas a doctor myself. Being passed around and guessing isnt good for my situation. My questions are can she miss the cancer if she doesnt biopsy the right spot? “

    Yeah, going back and forth and waiting truly does suck and is incredibly anxiety producing, and I am so sorry you are going through this and also that you are uncomfortable., In reality, getting in as many tests and appointments as you have had, between the holidays and COVID, is actually moving along pretty well. I think it sounds like you are assuming you have cancer, but that is not the takeaway I get from this. To me it sounds like the specialist is trying to rule out cancer so that the autoimmune disease can be dealt with.

    “Also anyone have bad breast issues with scleroderma before.? My breast are going thru hell right now. So uncomfortable, soar to touch, itchy sometimes. I been sleeping alot and feeling like my bodys been hit by a train. Is this a scleroderma symtoms? Thanks so much for writing to me ."

    I have not had any experience with this, but a few google searches confirm that scleroderma and lupus can indeed cause breast issues, and certainly cause fatigue and a general feeling of unwellness. In contrast, most women with breast cancer, often even advanced cancer, have no symptoms at all.

    Hang in there. This is not an everyday situation, and sometimes all but the common things take time to get to the bottom of

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2021

    Edited to add clarification of interventional radiology vs radiationoncologist

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2021

    To add to MelissaDallas's post, MRIs are notorious for false positives. I've had an MRI in the past where something was seen, and that led to a follow-up ultrasound - where it was confirmed that whatever was seen was not of any concern. So don't assume that the call-back from the MRI means this is cancer. The reason for the ultrasound is to take another look with a different screening modality, and the conclusion from there might be that this isn't anything to worry about.

    Do you have the actual reports from the radiologist from your mammogram and MRI? There may be detail in there that explains what they suspect from the MRI imaging and what they are looking for with the ultrasound.

    It does sound as though you may have two separate issues that's causing this to be more complicated than it otherwise would be. First you have something showing up on your breast imaging, and that needs to be investigated further. Then you have the skin issues, which from the biopsy appear to be related to your scleroderma and tumid lupus.

    Good luck with the follow-up ultrasound and your next appointment with the doctor. Let us know how it goes. Hopefully your breast issues turn out to be nothing serious at all and then you can deal with the scleroderma and tumid lupus.


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