IBC always caught by MRI or not?

Sarah4CC

Hi everyone. I started having pretty pronounced dimpling on my right breast about a month ago. Also skin changes. Red splotchy spots, some places that look like broken capillaires. and then also more visible veins. Some pain in the breast and its swollen. Went to the doc. Had mammo and u/s. Those were clear. Had an MRI. That came back normal. 

 I know my doc and the radiologist who saw it after my u/s were concerned about IBC becuase of the dimpling and swelling. Is IBC always caught on the MRI? And would it be progressing faster if it was IBC? 

 My doc wants to wait a month and see how it goes. If still there in a month, she'll send me to a breast surgeon for possible biopsy.  

Any input is appreciated. Thanks! 

ma111

Get it bx as soon as you can!

I presented with an occult tumor, after MRI, CT, Mammogram, Ultrasound all just showed bulky axillary nodes, pet showed more. However, nothing showed primary tumor location. I ended up progressing to IBC after 8 months NED. I progressed again recently with more IBC on the unaffected side while on treatment.

Hopefully I did not scare you, but would hate to see to see you end up like me. Better to check. It only takes a skin punch in the office to make sure. Dimpliling, itching, swollen, you know the signs.

Sarah4CC

Thanks ma111! I appreciate the response. 

 I have a couple questions. What's an occult tumor? And what were your initial symptoms that prompted the testing? 

 Thanks! 

ma111

Occult tumor means they couldn't find the primary tumor. I showed up with a lump in my arm pit, they bx it and it was breast cancer that had spread to my nodes there. Before bx, I had breast MRI, mammogram, unltrasound and CT. Post Bx even the pet/ct didn't show a tumor in the breast.

I found swelling while I was shaving my arm pit, turned out to be advance stage breast cancer. Do remember that I am a rare case, however, get a punch bx done, just to be safe. It was over a year after bx before the IBC showed up. It does show on CT's as thickened skin. I hope this explains things.

Sarah4CC

Thanks! I appreciate your input. I just was reading on the eraseIBC website that MRIs don't often catch IBC. That freaked me out. I'll email my doc and ask to see a specialist right away. 

 I'm also wondering if my symptoms would be getting worse quicker if its IBC? 

ma111

Sometimes yes, right away it would. Mine took 8 months off treatment to show. Than the other side showed in 3 days on treatment. I would be more comfortable getting a bx, even a punch one done in the office.

Laura_Jean

Punch biopsy on the affected skin would show if cancer is present in the skin. Ibc does nit always show up on an MRI since a tumor may not be present.



Laura Jean

Sarah4CC

Thanks! We have Kaiser and so I have to get referred to a specialist by my doc, who today said that with a clear mammogram, ultrasound and MRI, we're about as close to a 0% chance of cancer as we get. Trying to figure out how to email her back about IBC and it not showing up on the tests without sounding condescending. And then I'm not even sure a Kaiser breast specialist would be versed in what to look for with IBC. Aaarrrggg. 

@Laura_Jean..how fast did your symptoms progress? 

ma111

Try your gyne or a referal to derm. Some PCP;s will even do a punch bx in office.

Laura_Jean

I was fortunate that I was diagnosed almost immediately after seeing some redness on my right breast. A punch biopsy confirmed that the cancer was in the skin. I was on chemo in less than a month and the breast responded quickly to the chemo, so I did not see much worsening of symptoms that were visual. However,unfortunately the cancer did spread into my lymph nodes so it was there underneath even though it was not showing anymore on the surface.

I did have a tumor that could be seen on the MRI, but that's not always the case. My tumor did NOT show on the mammo or the ultrasound. I;m sorry to say that they are not correct to say that with a clear mammo, ultrasound and MRI there is a 0% of cancer; it sounds like you do realize that and now need to communicate it to your doctors.

Is it possible for you to see someone who  is a specialist in IBC? You do not say where you live but there are specialist clinics around the country; there is a site www.ibcsupport.org which has a lot more information about where to find them.

I go to Fox Chase in Philadelphia, but I'm not sure where you live; there is also MD Anderson in Texas.

Best,

Laura Jean 

Sarah4CC

Thanks for the input. I am in Southern California. I'll check that site. I'm just not sure insurance would cover seeing someone outside Kaiser. They subcontract with certian people for things they don't provide (like my breast MRI was external) but I don't know about an IBC specialist. Maybe I'll see if there is someone local and maybe call or email or something. 

 Thanks!!! 

dimdame

Sarah, I have rarely posted on this site.  I have Occult Breast Cancer which was discovered in my right lymph node.  I had 16 nodes removed, but only one had cancer.  There has never been a primary tumor and I have had the works for tests.  I too am Kaiser, Southern Cal desert.  They will not pay for an outside test other than the contract doctors, but I bit the bullet and went to USC.  My recommendations from them was Radiation to the suspect breast and no Chemo.  On thing I have learned is don't have the breast removed, why since there has been no sign of cancer in it.  Also, there is no better chance for survival with or without the breast. I am now over a year out from the Radiation.  Kaiser tests my blood continually and I have Mammograms every 6 months. 

I am now on an AL drug wihich I hate.  I also tried Tamoxafin.  I also am reading the odds for survival and I think I am at the 1% rate of dying from Breast Cancer.  However, it could always raise it's awful head somewhere else.  I had a mother die of Ovarian along with a grandmother.  Who knew the breast would be the one...  I also am 71, and I have a 76, 80 year old sisters, and none of them have ever had cancer