What stage am I?

Donna2012 · December 2013

Not exactly sure what stage I am (was). I had a 6" tumor in left breast. When I had a PET scan done, the oncologist said that 1 or 2 lymphnodes lit up "slightly", but it could very likely be from my breast biopsy about 1 1/2 weeks prior. I did not have any lymphnodes that could be felt. After 6 mos of chemo, I had a mastectomy & 15 nodes removed - all were negative. Clear margins were obtained. My breast surgeon said that all the lyphnodes looked 100% normal - and she could usually tell if they had been cancerous, but the chemo killed it. They would look different, but mine didn't. I then had 6 weeks of rads, but not to my underarm lymphnodes, since they were all negative.

So, what stage cancer did I have? I know IBC is usually stage 3, but again, not 100% sure if lymphnodes were involved. ???

ibcmets · December 2013

Donna,

From what I heard ibc starts at stage 3 because it's found in the lymph system. If metastasis occurs, like cancer found in other organs or bones, then it's stage IV. Looks like you have stage 3.

Terri

sbelizabeth · December 2013

Without evidence of distant metastasis, IBC is staged at 3B. BUT...many oncologists don't even bring up staging to the patient because it's something that tends to freak us out and it's an impersonal number that's not very significant to our individual circumstances. It doesn't take into account hormone receptor status, Her-2, grading, etc.

Clear margins and negative nodes is GREAT! Outstanding news for you! Forget what stage you might have been...on with life!

Donna2012 · December 2013

Bon -

Not sure why my info is not coming up in my signature area. But here are my stats:

6 cm+ IBC breast tumor. Er- Pr+ Her2+

Completed 12 weekly cycles taxol + herceptin

Completed 4 cycles (every 3 weeks) FEC + herceptin

Left modified radical mastectomy - at least 1 cm clear margins obtained with 15 nodes taken, none positive, small amount of original tumor was left - but not much

Pathology after surgery - Er- Pr- Her2- (this changed from original)

5 weeks of rads & 1 week of boost.

Finished 1 yr of herceptin

Now on tamoxifen

So, could it have been IBC with no node involvement? My breast was heavy, red, warm & swollen and it all appeared quickly. I did not have the orange peel skin, nor any changes to the nipple.

Donna2012 · December 2013

Bon,

I thought that IBC was a clinical diagnosis. I do not think my final mastectomy report said anything about IBC. I was under the impression that it is not diagnosed from a biopsy, but from the observation of the dr. at time of examination.

My dr. said that sometimes parts of a tumor can be ER, PR, or Her2 negative or positive, but other parts could be the other. Also, chemo could have changed it. Since I was originally Her2 +, he continued with the year of herceptin. And since I was originally PR+, he is continuing with tamoxifen.

Since I was missing some of the symptoms that others have had, I wonder if it truly was IBC - or was it caught just so darn fast??

I could feel a large "cyst" in my breast. It was squishy and could be easily moved around & would hurt a little if pressed on. All the signs of a typical cyst. Went for mammo & ultrasound. It could be easily seen as a dark round fluid filled mass with clearly defined edges. Everyone seemed to agree - a benign cyst. The next week I went in to have it aspirated. They said that the walls will stick together, and that will be the end of it, or it could fill again & need to be aspirated again. The dr. pulled out syringes of tan colored fluid (again the color of fluid in a benign cyst). Then, she took 5 samples of tissues in the cyst wall. I should mention that at this point - there was no redness or warmth or swelling to my breast. Within 2 days, the path report came back as cancer & within 3 days I was in my surgeon's office to discuss my options. From biopsy to surgeon's office (5 days), my breast swelled and became warm and red, almost bruised looking. This is why IBC was diagnosed.

So, was it just caught extremely early & is that why I did not have node involvement?

Kicks · December 2013

Inflammatory Breast Cancer does not form in fluid filled 'lumps' - it forms in nests or bands with no clear cut margins/edges.

According to what I was told by my PA, she was sure that it was IBC but could not say it was without confirmation. Saw her at 11 and was at Radiology at 1 for a new mammo, followed rapidly by a sono and the Radiologist coming in saying had to do biopsies then as he was sure it was IBC but without pathology confirmation he could not say it was IBC. He called me the next morning (Friday) at 8 with the path. report - IBC.

IBC is Inflammatory Breast Cancer - not Invasive or Infilltrating Breast Cancers (Ductal/IDC or Lobular/ILC). Huge differences - only between 1% and 5% of all breast cancers are IBC.

Donna2012 · December 2013

I think the cyst & IBC were possibly 2 separate things?? Not sure....

I went to a big city hospital and had it confirmed by a few drs. that it was IBC, so I am fairly certain, but still am not sure what role the benign cyst played & why it did not seem to spread to my lymphnodes.

cider8 · December 2013

since IBC by definition is in the dermal lymphatics (in the skin) it is automatically stage IIIB. IBC is never less than IIIB. If you have 10 or more positive nodes it is upstaged to IIIC. IBC stage IIIB or IIIC also means cancer is locally advanced, not early stage, not advance stage (metastatic). IBC with no positive lymph nodes would be IIIB. Pretty awesome pathology result to me! IBC is pretty sneaky in my experience; I don't know if you can find an answer as to why no cancer showed up in your nodes.

lintrollerderby · December 2013

From all I have read, IBC staging starts at IIIB because it involves the skin and IIIB is the lowest stage that can have skin involvement. IBC does not necessarily have lymph node involvement, though it certainly can.

IBC can be a clinical diagnosis, but skin and needle biopsies are usually performed and clinical diagnosis is made if the biopsies are negative, but the symptoms of IBC continue to persist and the physician no longer suspects mastitis or other conditions.

mammalou · December 2013

I hear so many different things on thus issue. I had cancer in my skin lymphatics and clinical symptoms. A red breast was what alerted me and I had skin thickening. My docs argued the IBC thing because not over 1/3 of my breast was red. I feel like I don't know what I have, IIB or 3B, and I wish I had a definitive answer. Thanks for listening.

sbelizabeth · December 2013

Me too, mammalou! We've talked about this before, I think. The physicians in my "team"--surgeon, oncologist, radiation oncologist, plastics--have argued back and forth about whether they could tag me with an IBC diagnosis. I first presented with a pinkish "spot" about 2 1/2 inches around, with peau d'orange texture within it. There was a tiny tic-tac lump directly beneath it. The tic-tac was biopsied as IDC, and eventually the pink spot was biopsied as IDC in the dermal lymphatics.

But the pink spot was small, and there was no generalized swelling or skin thickening on clinical exam, an none of the imaging (ultrasound, MRI, mammo) demonstrated any skin thickening or other signs of IBC. It was just a small lump of IDC with an "umbrella" of pink skin above it. Eventually they concluded the factors of my circumstances didn't add up to IBC.

In the final wash, I think, it's all semantics anyway. I was treated VERY aggressively--no differently than if "IBC" was in my signature line. Maybe if we took ourselves to the IBC clinic at MD Anderson we'd get a definitive pronouncement, but again...it doesn't matter much, except to the statistician.

Donna2012 · December 2013

Agreed... I too was treated aggressively and am happy that I was. I want to maximize my chance of not having to deal with this again in the future.

Donna2012 · December 2013

Bon,

Just was looking at my pathology report after surgery. Can you please help me to interpret it? There is more information on the report, but below is what I thought was important. Don't see any mention of IBC.

Thanks!

HISTOLOGIC TYPE: infiltrating ducal carcinoma, medullary type with squamous differentiation

VENOUS LYPHATIC INVOLVEMENT: absent

MICROCALCIFICATION: absent

NECROSIS: present

DUCT CARCINOMA IN SITU: absent

LOBULAR CARCINOMA IN SITU: absent

SKIN: present, not involved

NIPPLE, present, not involved

OTHER FINDINGS: atypical hyperplasia

PATHOLOGICAL TNM STAGE (pTNM)

PRIMARY TUMOR: pT2

LYMPH NODES: pNO (15 lymph nodes, negative)

Donna2012 · December 2013

Does anyone have any comments about my above pathology report & what it all means? I am trying to understand it. I was diagnosed with IBC, but it is not on this final surgery report.

Thanks

ibcmets · December 2013

Donna,

It's a good idea to go over your pathology report with your doctor. I did notice you were diagnosed with invasive ductal carcinoma & your lymph nodes showed up negative for cancer. If you have ibc you may be at stage III. Mine mentioned inflammatory & invasive ductal carcinoma.

Terri

mammalou · December 2013

my patholghy had idc and dermal lymphatic carcinoma

Donna2012 · December 2013

Thanks for all of your information. I guess the big question that I have is - I know that I had no skin, nipple or lymph node involvement, however, this was all after 6 mos of chemo. Wouldn't that be the case for most people? I can't say it was never in the skin, nipple or lymph nodes - maybe it was, and the chemo just got rid of it. (Never had a skin biopsy done before chemo) That is why I am confused about what stage I really am, and if it actually was IBC. It just seems with the heavy, swollen, warm, red breast - all signs pointed to IBC, at the time. And, the drs. that I saw were knowledgeable about IBC.

I went over my pathology with my dr. 6 mos ago, but there was so much going on then. Now that things have settled down, I am starting to further investigate everything and dug it back out to look at.

Wouldn't everyone's stage be different before chemo, than after? (Assuming chemo did something)

Also, I did have a PET scan done, immediately after diagnosis & before starting chemo. It did not show any mets, just possibly 1 or 2 lymph nodes, but again my dr. said that they could light up from the breast biopsy done the week before. So, it was never actually known if it was in my lymph nodes at all.

Thanks

Donna2012 · December 2013

bump

sbelizabeth · December 2013

Donna, as far as I know, re-staging isn't done after chemo. If there's no cancer found in the specimens submitted from surgery, it would indicate a complete response to the chemo, which is a great thing.

What stage am I?

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