IBC always caught by MRI or not?

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.

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.

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.

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 

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