Could Everyone Please Post What They Hav |
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lucky 
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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 Topic: Could Everyone Please Post What They HavPosted: Jun 18 2007 at 8:47pm |
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Hi,
I only came onboard here yesterday and posted about the rare form of breast cancer I have.
I need everyone's help, Please!
Could everyone please post what Kind of breast cancer they have Other than it being triple negative ??
In other words, do you have ductile, lobular, or some other kind of breast cancer that is triple negative ???
I am asking this of you because I have a very rare form of breast cancer called "glycogen rich Clear Cell Carcinoma Of The Breast" and it is triple negative.
Thanks to this group, I found out that triple negative is NOT the name of the breast cancer, but only the hormonal and her2neu status of it.
So, Please help me out, by posting the name of your particular type of breast cancer that is triple negative.
I really appreciate it because I am trying to figure out just how many, if any - has my kind of breast cancer.
Thank you so much!!
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Jules
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Joined: Jun 06 2007 Location: United Kingdom Status: Offline Points: 25 |
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Posted: Jun 18 2007 at 9:31pm |
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Hello Lucky
I've read your posts and I'm really sorry to hear that there is so little information available on glycogen rich clear cell carcinoma of the breast... I even did a sweep of the search engines to see what I could find 4u but couldn't find anything more than what you've already discovered.
 One site listed it under 'lobular' breast cancer as if it is a sub-type. If you want to know which site just let me know and I'll post it (I've forgotten at the mo) but I suspect you've probably already looked at it. Anyway, here's my dx. Hope it helps. Invasive Ductal Carcinoma of the Breast:
Grade 3 (poorly differentiated)
Stage 1 (tumour 17mm, clear margins, clear nodes)
ER-/PR-/HER2- (triple neg).
Best wishes
Jules
x
Update!
Found that site it's the WHO Classification of Tumours - just a long list!
But check out this PubMed page re study of 21 cases - describes GRCC as a feature of some very different types of breast cancer.
Hope I haven't confused things more. Edited by Jules - Jun 18 2007 at 9:57pm |
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yowyow
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Joined: Jun 13 2007 Location: Australia Status: Offline Points: 17 |
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Posted: Jun 18 2007 at 11:08pm |
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Hi Lucky, Invasive Ductual Carcinoma & DCIS (ductal carcinoma in situ) Hope you find information and others with your type of Breast Cancer
it sure will help to have someone else to chat about it with
Take care
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jun 19 2007 at 3:38am |
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Hi Lucky, both times I have had Invasive Ductal Carcinoma or sometimes they call it infiltrating ductal carcinoma, IDC.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Raine
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Joined: Jun 14 2007 Location: New Zealand Status: Offline Points: 34 |
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Posted: Jun 19 2007 at 3:17pm |
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Hi Lucky
I have had this twice now 1st time Left breast was Stage II medullary tumor Grade III 6 + nodes Triple Neg 2nd dx right breast Stage III IDC and DCIS Grade III 29+ nodes Triple Neg Take care and hope you met someone esle with your tumor type Lorraine |
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*Kristi
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Joined: Jun 12 2007 Location: United States Status: Offline Points: 5 |
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Posted: Jun 19 2007 at 4:57pm |
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Mine is IDC, stage IIB, grade 2, 3.9cm tumor, 2+ nodes and 15- nodes.
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Kristi
My caner blog |
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lucky
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Joined: Jun 17 2007 Status: Offline Points: 107 |
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Posted: Jun 19 2007 at 7:21pm |
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Hello Jules,
Thanks so much for finding those websites for me. Yes, I did see the one from Pub Med, but never even thought to check out WHO.
It's just incredible to know that hardly any research has been done on
glycogen rich clear cell carcinoma of the breast. Because of this, my overall chances of surviving are pretty slim. However, I am the eternal optimist and am extremely thankful that this group exists.
I notice that you are in the UK. The drug called clodronate IS available where you are. It's primarily used to protect the bones once it has already gone there. BUT, there is research going on now, with the results coming out in 2008. The research is on this drug is to see if it will PREVENT cancer from spreading to the bones. My oncologist says it's definitely worth trying it even before the results of the research come out.
My oncologist is from the UK and is involved in this research.
Would everyone else PLEASE post what the name of their cancer is besides it being triple negative ? Thank YOU !!!
Best wishes to you also and thanks again for the info.
lucky
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lucky
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Posted: Jun 19 2007 at 7:27pm |
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Thank you Kristi! It looks like I'm the only one so far who has the rare glycogen rich clear cell carcinoma of the breast,
 so I hope everyone else would be kind enough to post the Name of their cancer besides it being triple negative. It's important for me to know if there is anyone else around who has what I have.I hope everyone on here always gets a clean bill of health!
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lucky
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Posted: Jun 19 2007 at 7:33pm |
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Hi Lorraine,
Thanks so much for posting Your type of breast cancer. Even if I don't meet up with someone else who has what I have, I still am glad to chat and share info with everyone on here.
I guess I am " lucky" to have found this group!
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lucky
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Posted: Jun 19 2007 at 7:40pm |
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Thank you yowyow! I appreciate your answering my post!
I think it's going to be hard to find anyone who has my type of breast cancer. Stats indicate that only 1.4% of the population get what I have which is why I am anxious to know what kind of breast cancer everyone else has on here.
And - I am extremely greatful to everyone who is posting the name of their cancer for me - hope floats!
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lucky
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Posted: Jun 19 2007 at 7:47pm |
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Thank You trip! It seems that the majority so far have the Invasive Ductile Carcinoma.
Everyone, please don't let me down. If you are reading this - Please post the name of your cancer. Thank You!
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caz39
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Posted: Jun 20 2007 at 1:03am |
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Invasive ductal carcinoma Stage 3, Grade 3. (18mm lump)
Triple negative.
Carol.
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Jules
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Posted: Jun 20 2007 at 4:42am |
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Thankyou, Lucky, for mentioning about the Clodronate. I'm definitely going to look into that and talk to my Oncologist. I didn't realise that it's being given as a preventative measure after treatment has finished. I finished my treatment (mastectomy & chemo) in Feb07 so now would be a good time to get it started
Many many thanks & wishing you all the best
 Jules |
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2kidzmom
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Joined: Jun 20 2007 Location: United States Status: Offline Points: 22 |
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Posted: Jun 20 2007 at 9:34am |
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Hi everyone,
Well, mine is Stage 1, Grade 3 IDC, triple neg (1.2 cm, no nodes). I had 6 x FEC and 33 rads. I'll be going back in September for my first mammography since finishing treatment in March...but have the summer FREE! This seems like a nice site. Wishing the best to everyone here!!
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lucky
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Posted: Jun 20 2007 at 9:34am |
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Thanks Carol!
It's very much appreciated!
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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lucky
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Posted: Jun 20 2007 at 9:38am |
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Hi 2kidzmom,
Thank you for posting Your type of cancer for me. I think you are in good hands on here.
Wish you and everyone the best also!
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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lucky
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Posted: Jun 20 2007 at 10:03am |
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You're welcome Jules.
Yes, clodronate is usually given After all the other treatments are over with. My oncologist explained that is to make certain Nothing interferes with the chemo, radiation etc.
It is a possible Preventative against the cancer spreading to the Bones - not anywhere else in the body. Considering that there is nothing else triple negatives have as any kind of cancer inhibitor - it's definitely worth talking to your oncologist about. They have the oral kind and the iv kind. You wouldn't want the iv kind because it is too harsh on the body.
My dosage is going to be 1600 mg. per day. Over here, it only comes in 400 mg. pills - so that means I will be taking 4 of them per day.
Please check it out thoroughly on google and type in
clodronate breast cancer
You may also want to check out Bonefos, Ostac, and Clasteno. (sp?) They are all clodronate but just different names that different pharmaceutical companies use for this very same drug. Clodronate is the generic name of it. There is a drug in the States called Pamidronate but, that is Not the same as clodronate. Only clodronate is the one being used as a possible preventative.
I am always glad to help anyone who has cancer.
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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Bunnysmama
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Joined: Jun 19 2007 Location: Newburyport, MA Status: Offline Points: 254 |
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Posted: Jun 21 2007 at 3:47pm |
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Hi all, I had Invasive Ductal Carcinoma, Grade 3, Stage 1 (1.2 cm, clear margins, clear nodes). Had 4 rounds of dose dense AC and am now in my last week of rads. I'm getting 30 total rads, 5 boosts. Is it true that most triple negs are Grade 3? Hugs to all! |
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lucky
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Posted: Jun 21 2007 at 7:58pm |
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Hi Bunny,
Thanks for posting your type of cancer for me.
That's a good question you are asking about the Grade.
I wonder also if Most triple negatives are Invasive Ductal Carcinoma ?
Just by reading the posts, it does seem that way. I haven't yet read if anyone has lobular triple negative ?? Anyone ???
I've seen the unusual medullary and - the rare one I have.
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I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???
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Jules
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Joined: Jun 06 2007 Location: United Kingdom Status: Offline Points: 25 |
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Posted: Jun 21 2007 at 8:22pm |
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Another thought...
Does anyone know what proportion of triple negs are BRCA1 ?
Seeing as 80% of BRCA1 are triple negative, how likely is it that if you are triple negative that you would carry this gene?
Jules Edited by Jules - Jun 22 2007 at 2:54pm |
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IDC, Stage1, 17mm - clear nodes & margins, Grade3, 3neg, NED
 ! BC post-Hodgkin's rads to mantle field, family history of BC & OC
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