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How Important Is Your Type Of Cancer ??
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lucky View Drop Down
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    Posted: Jun 25 2007 at 3:39pm
Hi everyone,
 
Because my cancer is very rare -  I am wondering what everyone's opinion is about how important is the type of cancer you have -  other than it being triple negative  and/or  brca  ??
 
In other words,  does the type of  breast cancer such as - lobular, ductile, medullar ..... etc.  have alot to do with what the outcome is going to be - besides the fact that it is triple negative ???
 
Hope my question makes sense - and thanks for answering!
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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momtopebbles View Drop Down
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Well, they say medullary is the best type-yeah like bc has a best type- to have. It tends not to spread as much or as fast as other kinds. I am counting on that...LOL
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lucky View Drop Down
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Thanks for answering momtopebbles!
 
What does everyone else think ????
 
Please share what you know.  
 
Thanks everyone!
 
Originally posted by momtopebbles momtopebbles wrote:

Well, they say medullary is the best type-yeah like bc has a best type- to have. It tends not to spread as much or as fast as other kinds. I am counting on that...LOL
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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CalGal View Drop Down
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Hi Lucky -

Interesting question.

For me, due to the particulars of my dx, the areas that are important to me and the ones I've done a ton of research on, are:

BRCA1
Triple Negative
Mets to the Liver

For me, those three areas related to bc are of more importance than the type (invasive on the left, DCIS on the right) of bc that I have or had (and I know that most BRCA1's are trip neg and that most trip neg is high grade) ...  I've also gone to conferences - FORCE (for BRCA & high risk) and the Metastatic Breast Cancer Network Conference in NY last year, which will be held at MD Anderson this year in Nov. 

But, if I had the rare type of bc that you have, that would be one of my priorities.

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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lucky View Drop Down
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Hi CalGal,
 
Thanks for answering my question.
 
Do you know if the pathology of the cells are being studied as well as the addition of it being triple negative at these conferences ??
Maybe if they knew that it seems to be more prominent in Invasive ductile and medullary,  they could figure out why so few if any cases of triple negative are Lobular ??  
Ductile and lobular are the most common forms of breast cancer.  Yet, triple negative seems to be more popular in Ductile.   What is in Lobular to give it more positives - allowing it to be treated easier ???
 
 
Originally posted by CalGal CalGal wrote:

Hi Lucky -

Interesting question.

For me, due to the particulars of my dx, the areas that are important to me and the ones I've done a ton of research on, are:

BRCA1
Triple Negative
Mets to the Liver

For me, those three areas related to bc are of more importance than the type (invasive on the left, DCIS on the right) of bc that I have or had (and I know that most BRCA1's are trip neg and that most trip neg is high grade) ...  I've also gone to conferences - FORCE (for BRCA & high risk) and the Metastatic Breast Cancer Network Conference in NY last year, which will be held at MD Anderson this year in Nov. 

But, if I had the rare type of bc that you have, that would be one of my priorities.

CalGal
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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cas145 View Drop Down
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Hi lucky, I have just been re diagnosed with DCIS on my right side I had right mast last April and have now had old scar where 16 negative nodes were taken in 06 that has now grown a tumor which was also DCIS. Had frist round of chemo Monday on Taxatere and Carboplatin hope this works. I had FAC last year didnt work. Cas
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trip2 View Drop Down
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Cas fingers crossed the Taxotere and Carboplatin will work for you.
 
Can I ask how you found your new tumor?  Was it by mammo or other screening or did you find it yourself?
 
I am currently on Taxotere for my 2nd diagnosis this year so if I can help w/that just give me a yell.  I have not had the Carboplatin.  The first time diagnosed 4 yrs ago I had ACT, guess that didn't work for me either.
 
Will they give this to you together or how is your treatment plan set up?
 
Sorry, lots of questions here but just trying to learn,
 
Good luck on your first day, hope it goes smoothly and keep us posted on how you are doing,
Stage 2 2003
Stage 1 2007
BRCA 1+
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lucky View Drop Down
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Hi cas,
 
Please forgive me but I don't understand alot of the abbreviations that are used on here.  What is  FAC ??
Am I understanding that you had a right mastectomy last April that was
DCIS  and Now the cancer has returned in the area where the 16 nodes were taken out ????   Does this mean that the cancer is NOW in the right lymph node area ????
 
I was first diagnosed this past September and then had  adriamycin and cyclophosphamide ( cytoxan )  for three months  and then only one dose of taxotere.   After that experience I had a double mastectomy even though the cancer was only on my left side and in some of the lymph nodes.
I had both breasts removed because I think it's a good idea.
One month after the surgery, which was in March of this year,  I then had
25 doses of level 4 radiation.   My skin on the left side, under my arm and up to my neck looks like I've been grilled well done on the  bar b.
I look like I've been sawed in half by a magician and in certain areas of the incision, my skin is as hard as wood.   When friends say something and they want to knock on wood ..........  I just tell them to knock on my left side of the chest wall.  LOL
It's from all the nerves they had to cut and the surgeon cut right down to the bone.    But -  I am glad that I had both breasts removed.
When they did the pathology on my breast from the surgery,  they realized that for me -  the chemo didn't even shrink the tumor. 
 
You have a common form of breast cancer which I noticed most everyone one here has.  That's a good thing -  because it means that whatever research is being done -  is aimed at the kind of cancer you have -DCIS.
 
I hope the Taxotere and Carboplatin really" kick your cancer to the curb."
Thumbs%20Up
 
Thank you for letting me know what kind of cancer you have.
 
 
Originally posted by cas145 cas145 wrote:

Hi lucky, I have just been re diagnosed with DCIS on my right side I had right mast last April and have now had old scar where 16 negative nodes were taken in 06 that has now grown a tumor which was also DCIS. Had frist round of chemo Monday on Taxatere and Carboplatin hope this works. I had FAC last year didnt work. Cas
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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