Diagnosis disputed!!

MsBliss · April 2009

I originally was told I had IDC with medullary features. Triple neg, grade 3. I showed my biopsy and surgical pathology to someone who said, "wait a minute--this reads as True Medullary. You need to confirm." He told me diagnosis of true medullary is very difficult and has become controversial because of the risk of undertreatment, so pathologists are reluctant to do so. The mention of "medullary features" (AMC) is common, while "True Medullary" (TMC) is very rare. My tumor has a very defined border, slightly firm, lobulated, invisible on mammogram, prominent lymphoid follicles and intratumoral lymphocytes, pushes on margins, no scarring, no ducts or glands. I have been told that clinicians would rather TMC be overtreated as opposed to undertreating an AMC. I feel I may have an option to avoid chemo--I have a complicating intestinal condition that would become dangerous if I take Taxotere, so I am trying to see if any of you have been told that you are TMC and what type of treatment you received.

chumfry · April 2009

Well, I'm pretty sure my first tumor (2005) was true medullary. But my oncologist (at the Mayo Clinic) said the treatment wouldn't really differ much from triple-neg IDC. They went after both varieties very aggressively with chemo. My second tumor (2007) was triple-neg IDC.

The tipping point on whether chemo causes more harm than good appears to lie with the size of the tumor. Anything over 1 cm usually is treated with chemo. Since we triple-negs have no other treatments (such as hormones) available, we usually try to hit them hard with chemo. Since triple-neg tumors tend to grow fast, chemo is extra attracted to them and works extra well.

I got taxol both times. I think it's related to Taxotere, but has fewer side effects. Carboplatin also appears to be especially effective for triple-neg BC.

--Cindy MN

MsBliss · April 2009

Hi Cindy! Thanks for your thoughts. Interesting. My oncologist said I could opt out of chemo if I chose to should my tumor prove TMC. She said the atypical cannot opt out--it is agressive IDC. The chemo otherwise would be Taxotere/Cytoxan or Abraxane/Cytoxan and then radiation. I just learned about CMF, 6 month, which is milder with fewer side effects. Have you heard of this? Also, did your doctors at Mayo say your medullary had the white blood cell infitrate and circumscription when you were diagnosed? It is so difficult to get a concensus and clear diagnosis with this type of cancer. I am thinking of going to a different cancer center, like Sloan Kettering or MD Anderson.

MsBliss · April 2009

Also, I noticed your avatar states you were stage 2, but your details look like stage 1. Can you tell me why?

chumfry · April 2009

I think I'm Stage 2 because my 2005 tumor was 4.5 cm. I can't figure out how to get both sets of my info into my signature line.

As I recall, the breast surgeon told me the 2005 tumor was encapsulated by white cells. That meant it would be less likely to spread. However, my body came up with a triple-neg IDC tumor in my other breast just 13 months after I finished chemo. I was shocked, to say the least.

I also tested negative for both BRCA-1 and BRCA-2, but I wonder if I may have some genetic component that hasn't been discovered yet.

I chose to have mastectomy in 2005 because I worried about the effects of the radiation that would be needed if I got a lumpectomy. I had DDD breasts, so that's a lot of real estate to radiate, which upped the risks a bit. It also could have affected my heart since that tumor was on left side.

I've now had two mastectomies, which makes me feel a lot safer since my body apparently is really good at creating breast cancer!

--CindyMN

chumfry · April 2009

I've heard MD Anderson has someone who actually specializes in triple-neg BC, but I don't know the doc's name. Everyone needs to make their own decisions re treatment, but my recommendation would be to bring out the big guns now and do the chemo.

Frankly, I wasn't given any choice about treatment, but I'm glad we went at it aggressively. It helps a little to know that I've done everything possible to kill it. I'll never have to look back and think, "Well, if only I'd done this or that." My husband says we nuked it from orbit! LOL

It would be hard to have to decide on a borderline case like yours, because chemo is hard on your body. In 2007, I had 12 weekly treatments of Taxol and Carboplatin (three weeks on, one week off, repeat) and it was LOTS easier on me than the dose-dense AC and Taxol. In fact, I think weekly Taxol is supposed to be most effective on triple-neg BC.

--CindyMN

MsBliss · April 2009

The pathology report done after the first surgery would probably answer the question on whether it was TMC. The hallmark of TMC is the skin of white blood cells, but there has to be a wbc infiltrate as well--apparently that means the body has recognized "the intruder" and the doors are locked! My tumor is over 1cm, but just barely. It has all the markers of TMC but the oncologists I have met with still recommend chemo--except for one. She said if it is "true", and that is doubtful, I can opt out. It is def rolling the dice.

Shirlann · April 2009

Hi gals, I am a "True Medullary", but it took Paul Peter Rosen, MD, in White Plains, New York, to confirm the diagnosis. My docs sent my slides to him, he is an expert on Medullary. I am sure you can find his addy by Googling his name.

I am in my 11h year post treatment and so far, so good.

Gentle hugs, Shirlann

Wink333 · April 2009

Hello,

Can someone explain medullary and medullary features? Does this have anything to do with the term "basal"? I'm confused. Thank you for any information.

Wink

MsBliss · April 2009

What kind of treatment did you have? Did you have chemo and rads? What was the size of the tumor? Are you all clear for 11 years?

MsBliss · April 2009

I am still learning and so I hope I get this right. Medullary features means it has the features of medullary without satisfying all of the criteria. The criteria are varied from what I have read. They are well defined with rounded borders that push out. The cells form "sheets"called synctial growth patterns. The cells run together with no border between them. There are lymphocytes around at least 75% of the border and diffused within the stroma of the tumor. There is no scar tissue around the tumor, which is very rounded and defined with no microscopic infiltration of the border. They are by nature high grade and triple negative. They are usually tan to gray with no ducts, tubules or glands. They are a paradox, because they are histologically as bad as it gets--triple negative and often 9 out of 9 on the Bloom Richardson scale. But the tumor is rarely found to have spread to the nodes. The cell is a bad behaving one, but the tumor as a unit is not bad behaving. Some stop treatment after surgery and just monitor. It tends to have a good prognosis. Medullary features can be found with IDC; when you have IDC with medullary features they are basically IDC and are treated as such. IDC with a few of the features does not usually have a well behaving tumor--they are usually treated more aggressively.

Diagnosis disputed!!

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