IBC recurrence AFTER bilateral mastectomies and reconstruction.

So sorry you are experiencing this trauma, again! But I'm not understanding how you can be Stage IV if your bone and cat scans are clear. 

I know nothing about the system they are using, but I think you should get a second opinion, if possible.

wildflowers - where are you being treated?  Im in Ontario and was treated at Sunnybrook  Maybe you should try to get a second opinion at PMH or Sunnybrook?

PM me if you want to talk

Dear Wilflowers123,

I am not a medical professional but T4 N0 M0 means that the tumor size is a "4" but you have 0 involved nodes and 0 distant metastasis.  I am not sure how that makes you Stage IV.  As everyone else chimed in, a second opinion seems to be the best course of action.

I am puzzled too. T4NoMo is what YoungTurk says. THAT is not stage 4. You have a new primary. Not a nice one either. Are they thinking "skin" involvement????

sorry to hear of your new dx wildflower.   I hope you get some answers today that will explain things better.

Cider8 had similar to you...IDC-Bilateral mastectomy/reconstruction & then IBC

it's still not stage. IV I have the same cancer with skin and node involvement and it's a stage 3. The Doc's want us to stay off the interview because they don't want us to ask question. Well goodluck to you !

IBC is always minimally diagnosed IIIB because it is within the skin: cancer cells are growing in the lymphatic vessels (not just traveling) and blocking the lymphatic flow.  This is different than skin mets.  With IBC, the blocked lymph vessels cause the swelling, the puckering, the redness.  There may be some tumors but not usually.  With skin mets the cancer cells are not just contained in the lymph vessels but is invading capillaries too and is causing destruction of the skin layers.  

Now I am curious if you have skin mets that presents with some of the IBC symptoms vs a new primary of IBC they've staged as IV.  In your message above you wrote stage 4b, but there is no 4b, just 4.  In my own experience it would not be a new primary in the same breast as original cancer, especially not having gone a year since first diagnosis.  

My story is that I had BMX with recon.  A second more invasive tumor was found at BMX so I had chemo.  About a year later 2mm of cancer was found in some tissue taken out of the same breast (from recon revision).  So I had the cancer breast radiated.  While I was getting cancer breast radiated, non-cancer breast had a patch of dry red skin that grew.  That turned out to be IBC.  No breast tissue, no previous cancer.  So it was treated as a new primary.  My docs often refer to it as 'new primary vs recurrence' because they technically don't know which it is.  It's said the cancer doesn't spread to the other breast but they certainly can't explain how I got it.  No sign of cancer anywhere else.  So I had chemo again, surgery to remove the flap/breast skin and axillary nodes.  Then aggressive radiation.

A punch biopsy would give more info, if it is IBC or skin mets.  I'm no expert and I don't have skin mets experience.  If they are doing radiation instead of chemo, it sounds more like a skin mets palliative standard of care.  And if they can see little nodules, 'rice grains' it sounds more like skin mets.

Best of luck to you.  There is a Canadian IBC support group on Facebook you might want to check out.

OK, so I asked about this scenario.  It sounds like what you have is referred to as secondary IBC, a recurrence that is behaving as IBC.  Having secondary IBC with skin mets vs a recurrence with inflammatory properties and skin mets all depends on clinical presentation (the redness, swelling, heat, orange peel) AND pathology findings (lymphovascular emboli vs scattering of cells).  This is a complex scenario, as mine was.  

Do you feel confident that your doc is experienced with a complex case of IBC?  Has he told you that you are metastatic due to skin mets?  Do you understand why this is being treated as skin mets instead of secondary IBC if you don't actually have skin mets?  In some cases of secondary IBC, the primary IBC protocol can be followed (chemo, surgery, rads).  Are they radiating your axilla?  IBC is notorious for positive nodes not showing on scans.  

These are just some questions and aspects to consider to better understand your scenario.  Do you have your pathology report from the biopsy?  You are entitled to a copy of all your records.  This helped me understand my diagnosis, as I had time to look up each word or aspect.  Such as T4N0M0 = 3B, not stage 4.  Obviously, this staging confusion is bugging a number of us!  Your radiation oncologist should be explaining exactly what is going on as well, and what he hopes radiation will accomplish.

Wildflowers, thank you for the explanation.  I am so sorry that you have gone through all this.... I can only imagine the shock of this diagnosis, after you had just completed treatment and had the BMX.

It sounds as though all your doctors believe that you have skin mets, which unfortunately is Stage IV.  

While your diagnosis is clear, the part that remains confusing is why your oncologist told you that your cancer is T4 N0 M0, because within TNM staging, that is Stage IIIB.  If your oncologist believes that you have skin mets, then he should have told you T4 N0 M1 - then there would have been none of this confusion. It may seem like a technicality, but I'm sure that for all the women with IBC who are T4 N0 M0 and who are Stage IIIB, it's very significant.  The M0 vs. M1 makes a huge difference in the stage and the prognosis.

You might want to ask your oncologist for his explanation about this the next time you are talking to him.  

Good luck with your treatment.  I hope that the rads continues to work and is successful at containing the cancer.

wildflowers, my heart does go out to you at this very stressful and emotional time.  I'm glad you have done your homework and you are asking your docs the questions!  When my nurse navigator told me my very first biopsy was cancer she told me BC.org was the only place on the internet I should go.  There is good info here.  We're all grilling you because we all want you to get the best care---and you are running informed with it!  Good for you.

I am so sorry you have progressed.  I hope you get some support and info from the Stage 4 boards here.  There is also a closed group on Facebook for IBC mets.  I was first diagnosed at 39, now 42.  My kiddos are now 10 and 13.  You can find some great podcasts regarding metastatic BC on the Living Beyond Breast Cancer website.  While I have not progressed to Stage 4, I have had to undergo a lot of treatment within 3 years.  It is rough.  Take it one day at a time and be gentle with yourself.  

Wildflower I am moved by your story, we were dx at almost the same time, surgery same time. I am so sorry for this cancer. I am glad you are finding comfort leaning on God during this time. My prayers are definitely for you. Keep fighting!