IBC recurrence AFTER bilateral mastectomies and reconstruction.

Wildflowers123

just wondering if anyone is in this same boat. I had stage 2 grade 3 triple neg BC last July. Completed 5 months of chemo, and then surgery in January of this year for bilateral mastectomies and reconstruction. I was given the "all clear" after recovering, but then noticed a "bruise" on the same breast (thought it was a broken blood vessel" only to be told that it was in fact, cancer (again), and this time stage 4 inflammatory cancer. Prognosis is palliative. I'm 39!!!! Just trying to wrap my brain around this! I have a family, and I'm scared shitless. Please tell me I'm not the only one! They are doing 30 rounds of intense radiation to control pain, and to try and contain it. Chemo has not been offered. Both my bone scan and cat scan are clear for now???? 

pupmom

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. 

Wildflowers123

They are using the TNM system, and have staged this as a stage 4b. I've scratched my head at this as well, and after reading doc's online it seems the seer method would classify it as a 3. However, my onc stated it is a T4 N0 M0 for the time being. (?) 

pupmom

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

Moderators

(((HUGS)))). No, you are not alone. You may want to also consider posting in this forum, to find other women with a Stage IV diagnosis. https://community.breastcancer.org/forum/8 or for young women https://community.breastcancer.org/forum/27

We are here for you!

rozem

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

Moderators

Also, agree with yorkiemom, that perhaps you should get a second opinion to best guide your course of treatment. 

YoungTurkNYC

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.

Akevia

stage IV how is tha possible with clear scans. You need to get a second opinion fast, so sorry to hear about the diagnosis. Goodluck

bluepearl

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????

Kicks

What was your original DX?  If it wasn't IBC then this is a new primary not a recurrance of another type.  A second opinion is in order, or at the least, answers to many questions.  Get a little note pad and write down all the questions and take it with you to next appt and to be sure you don't forget to ask any/all of them.  If you don't get an answer that you understand, then do not let it go before you get an answer you understand.  Take notes on what is said so you can go back later and review.  Another idea is to take a tape recorder (your smart phone) and record what you are told so there can be no mistakes in notes.

Wildflowers123

Thank you to everyone who responded. I see my onc today. I will take all of this info with me! Thank you for taking the time to read my post! Xo

Beesie

Were you specifically told that this is Stage IV?  Or were you told that it is T4, as in "T4 N0 M0"?

T4 refers to the classification of the tumor; it is not the same as the stage.  A T4 tumor is a "Tumor of any size with direct extension to the chest wall and/or to the skin (ulceration or skin nodules)".  Those who have T4 tumor may be either Stage III or Stage IV, depending on the nodal status and presence of mets.

"T4 N0 M0" is Stage IIIB.

Definitions of TNM

Dejaboo

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

Wildflowers123

The staging is based on tumour size, and it is also in surrounding skin. Makes sense to me now that I've researched the heck out of it.  I went in with all of your questions The answers I was given is that this began as triple neg again, then developed into inflammatory. The cancer has spread into the surrounding skin, with nodules present (visually). 

Funny, my oncologist was a bit perturbed and said "please stay off the internet! - especially those breast cancer sites"! I chuckled and said "no! Where do you think I'm getting my questions? Valid questions!" 

Thanks again to all who responded. 

Akevia

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 !

Beesie

Akevia, I agree.  If there is no mets, then the diagnosis cannot be Stage IV.

Wildflowers, where you specifically told that this is Stage IV? Or were you told that it is T4, as in "T4 N0 M0"?

T4 refers to the classification of the tumor; it is not the same as the stage. A T4 tumor is a "Tumor of any size with direct extension to the chest wall and/or to the skin (ulceration or skin nodules)". Those who have T4 tumor may be either Stage III or Stage IV, depending on the nodal status and presence of mets.

"T4 N0 M0" is Stage IIIB.

Definitions of TNM

Staging is based on a combination of tumor size (T), nodal status (N) and whether or not there is mets (M).  Staging is not based on tumor size or tumor characteristics alone. That's the TNM staging system.  Although it was not always the case, today staging standards are universal; they are not subjective and should not be altered or adjusted by an individual doctor. 

According to the staging standards, Stage IV breast cancer always includes the presence of mets.  That is an M1 classification for mets.  (See the link above.)  

A T4 tumor - a tumor that is in the surrounding skin - is not Stage IV if there is no mets.  The "M0" in T4 N0 M0 means that there is no evidence of mets, which means that this diagnosis is not considered Stage IV.

Wildflowers, could it be that your oncologist believes that you have mets, even though it has not been found in screening?  Although if he does, he should have told you that your TNM status was T4 N0 M1 or maybe T4 N0 MX (MX means not mets status is not yet determined).  That would explain his saying that you are Stage IV.  But T4 N0 M0 makes no sense if he is saying you are Stage IV. 

Edited to combine my earlier post with this post so that all the staging info is in one place and it's more clear.

cider8

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.

Kicks

Triple Negative is not the type of BC - it is a modifier for all types.  All the different types can be TN, TP or any combination.  What was your original DX? (DCIS, IDC, ILC, IBC)  Your Dr biopsied your small red area and the biopsy came back IBC?  'Look' cannot DX cancer - pathology reports do.  Are you sure your Dr is saying 'inflammatory' and not 'invasive' or infiltrating'?

No one here is an Oncologist that is seeing you - we can only say what our experiences with IBC have been for those of us who are IBC.  Personally - I'd be getting at least a second opinion.

cider8

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.

Wildflowers123

Ok, again thank you to all of you. I will try to better explain my story here. So, last July (2013) I was diagnosed with stage 2b invasive ductile carcinoma. Triple negative. In left breast. I underwent 5 months of chemo (every 3 weeks), and finished beginning of December. In January, (2014) I had BMX and reconstruction - latissimus dorsi procedure. Everything was going great. Towards the end of my recovery from this procedure I noticed what looked like a bruise - about the size of a quarter, and I thought I had pulled something - it was right next to my sternum. Within 3 weeks it "blew up!" And covered 1/3 of my breast. Deep purple, dimpled, grainy (grains of rice? Yes!), and I immediately went into the emerg. All along thinking I was having some sort of reaction to the implant or surgery - never ever thought it was cancer again. Never. The emerg doctor sent me to my surgeon the next day. She told me that she had only seen this twice in her medical profession, and she was fairly sure it was cancer. She biopsiedthe tumour   (?) that had originally started which at this point had grown into the size of a golf ball. It wasn't round per se, but a definite lump. She called me 2 days later and referred me to a radiation oncologist, who I was going to see during the first bout of cancer, but didn't because I had BMX. From there I went for a bone scan and cat scan. During this time I also saw my original oncologist who was responsible for the chemo cocktail through the first round of cancer. At this point both scans had come back clear. He told me that they normally don't throw the book at you with both rads and chemo at the same time unless they were hoping for a cure. Since I was palliative, they would do rads first and possibly meet after rads to discuss whether or not chemo would be an option for me. He said that should I be a candidate for chemo after rads, it wouldn't be the gruelling chemo I had before. Just mainly to enhance what the rads has done thus far. My family doctor had called during all of this and explained that yes I fact, I was palliative and that this was a stage 4 cancer because it has inflammatory properties and has invaded the skin. I was devastated, and honestly did not hear much after that. The palliative word alone nearly knocked me out. 

I am in the process obtaining my medical record. I will read some more. I really appreciate all of the input I have received here. I really do! 

This has been the most difficult time in my life. I have a family. Trying to process this news is such a roller coaster. I have a husband and we have a 15 year old son. We are so close, and currently so scared. 

Wildflowers123

oh, and on a further note. My radiation oncologist has told me that her goal is to contain the cancer, and control pain from this point forward. (" because this can get quite miserable" - her words) and that I was dealing with "quality of life over quantity at this point". She believes the rads is working as the nodules were "flattening down" in the breast. 

Akevia

okay goodluck to you wildflower !!! 

Beesie

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.

bluepearl

Often mistakes can and do occur with staging information, but given all your medical team is saying you have stage 4, then it is best to accept that it is stage 4. This is a terrible blow to you. We who have early stages fear this the most. But, you have clear scans...this is good....and you may very well have years ahead. No one knows how much time they have, so it is best to assume that today is the best day, and live like that no MATTER who you are. I am sorry that you got this diagnosis because the stress is, I would think, beyond words. I am hoping as genetic research progresses, a better handle on this disease can be had, perhaps even a cure. Have you considered trials?

cider8

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.  

Wildflowers123

Thank you! I have really learned to take this one day at a time and have basically surrendered to God. He will decide when it's my time to go. I've never been a religious person, but this frame of mind (surrendering) is the ONLY thing bringing me peace at this moment. Prayers to all of you through your journey. I really mean that...I hope you all get well and have a clean bill of health. 

Xo

Meadow

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!

Wildflowers123

Thank you Meadow. I've just read your story as well, and boy oh boy there are definite similarities. I would love to chat with you some time. It's difficult finding someone else in this position to bounce things off of. 

Prayers and best wishes to you all.