Could Everyone Please Post What They Hav
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Topic: Could Everyone Please Post What They Hav
Posted By: lucky
Subject: Could Everyone Please Post What They Hav
Date Posted: 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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Replies:
Posted By: Jules
Date 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!
http://www.iarc.fr/WHO-BlueBooks/pdffiles/contentsb5.pdf - http://www.iarc.fr/WHO-BlueBooks/pdffiles/contentsb5.pdf
But check out this PubMed page re study of 21 cases - describes GRCC as a feature of some very different types of breast cancer.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7611537&ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum - http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7611537&ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Hope I haven't confused things more.
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Posted By: yowyow
Date 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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Posted By: trip2
Date 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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Raine
Date 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 |
Posted By: *Kristi
Date 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. ------------- Kristi http://www.kristi-thepinkpages.blogspot.com - My caner blog |
Posted By: lucky
Date 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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Jules wrote:Posted By: lucky
Date 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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Posted By: lucky
Date 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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Posted By: lucky
Date 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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Posted By: lucky
Date 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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Posted By: caz39
Date 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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Posted By: Jules
Date 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 |
Posted By: 2kidzmom
Date 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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Posted By: lucky
Date Posted: Jun 20 2007 at 9:34am
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Thanks Carol!
It's very much appreciated! ------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date 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!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date 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.
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: Bunnysmama
Date 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! |
Posted By: lucky
Date 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.
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: Jules
Date 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 ------------- 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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Posted By: peach
Date Posted: Jun 22 2007 at 3:46am
| I have Invasive Ductile Carcinoma Stage IIA, Grade 2, (2.1 cm clear node, and clean margins) triple neg. When you talk about aggressiveness are you going by the grade? I'll be starting chemo next month, still trying to figure out this triple neg thing it sure is confusing. Even when I questioned the doctors about mine being grade 2, they didn't have answers for me. Makes me wonder if anybody really understands this stuff. |
Posted By: Bunnysmama
Date Posted: Jun 22 2007 at 6:51am
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Peach,
The grade tells you how abnormal or mutated the cancer cells are compared to normal cells. Generally, the more abnormal they are, the higher the grade, and therefore the more aggressive the cancer. Here's a link to a site that explains it pretty well:
http://www.cancerfacts.com/GeneralContent/Breast/Gen_GradingTheTumor.asp?CB=10 - http://www.cancerfacts.com/GeneralContent/Breast/Gen_GradingTheTumor.asp?CB=10
Do you know what your chemo treatment will be yet? Good luck!!
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Posted By: peach
Date Posted: Jun 22 2007 at 8:34am
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Bunnysmama,
Thanks for the site link it does explain it. I just got back from visit to my oncologist and she wants me to do TAC every three weeks for 6 weeks, then my radation. I questioned her about 4 AC and 4 T double dose every two weeks, she said she would do which ever I wanted and there were no studies that showed one better than the other. I've noticed alot of triple negs seem to get the later treatment. Does anyone know if one treatment is prefered over the other? I go back next week to finalize my treatment plan then start chemo in July.
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Posted By: CalGal
Date Posted: Jun 22 2007 at 12:50pm
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Hi Lucky - On my initial dx, I had infiltrating ductal carcinoma (also called invasive) on my left breast and DCIS on my right. I also was a Grade 3 for everything. 15 mos later, I had a recurrence of the invasive, mets to liver and unrelated kindey cancer. After that I found out I'm positive for the BRCA1 mutation. But, I've been NED for bc for 1 year and NED for kidney cancer for 3+ months! I can imagine your frustration with having such a rare type of bc ... I felt that way being BRCA1, triple negative with mets ... but I've found others with that ... and I have to say that your posting of your specific type of bc is the first I've heard of it. As someone else asked (and forgive me if I missed your response), is it a sub-type of one of the more common bc's? Just want to correct some info that was posted: BRCA1 - approx 80% triple negative BRCA2 - approx 80% hormone receptor positive and only 20% triple neg 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 |
Posted By: Bunnysmama
Date Posted: Jun 22 2007 at 2:16pm
CalGal, you've been through a LOT! You are one tough cookie! 
How was it determined that the liver was due to mets but the kidney was unrelated?
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Posted By: momtopebbles
Date Posted: Jun 22 2007 at 2:54pm
I was diagnosed with atypical medullary breast cancer. I haven't heard of your type but I do wish you much success in your battle.
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Posted By: Jules
Date Posted: Jun 22 2007 at 2:57pm
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Sorry,CalGal
 ... it was me who gave the wrong figure for BRCA2. I've edited my post to read as below.
------------- 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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Posted By: CalGal
Date Posted: Jun 22 2007 at 4:03pm
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Hi Bunnysmama - Here's the (long) answer to your question, "How was it determined that the liver was due to mets but the kidney was unrelated?" - Oct 2005 - Mamm allegedly fine (6 mos later, after the "lost" mamm's are found, even I can see the 2 cm lump that the radiologist missed). - Dec 2005 - I found a lump ... a few days later determined to be recurr bc. I had to ASK for a CT scan (never got one on my initial dx and later denied due to the allegedly fine mamm) ... that showed uptake in the breast, liver and kidneys. A later PET scan showed the same. My breast surgeon initially offered a liver biopsy, but then reneged after the PET scan. I did a ton of research and it was quickly evident that that there was no overlap in treatments for breast cancer, liver cancer and kidney cancer (just in case I had three primary cancers, which I later learned I did not, only two). Of the three, the liver was the most serious and needed to be addressed first. While the tumors on my liver were most likely bc mets, I needed to be sure before starting chemo ... and with the kidney cancer, it could also be kidney mets - although unlikely. I had two outside consultations (USC and City of Hope). Both doctors were shocked that my HMO wasn't going to do a liver biopsy and said that it was "mandatory". I took that back to my HMO and got the liver biopsy, the pathology of which confirmed that it was met bc. Of course, all of this took time, getting records, getting appts and then later the liver biopsy and the results. Believe me, I was calling as much as I could w/o being obnoxious. In that month delay, the breast tumor grew from 2 cm to 3 cm to where it was a visible lump protruding that was extremelly unnerving and distressing for me ... I knew the cancer was growing unchecked. I was thrilled to start chemo on 2/1/06. I guess the doc's went on probability re: the kidney cancer ... as it is NOT a location that bc metastisizes to ... and believing that it was kidney cancer (of which I have NONE of the risk factors for), it tends to be slow growing, so we needed to go after the bc and bc mets to the liver first. To complicate matters, the kidney cancer was in a very tricky, difficult location. The normal treatment for kidney cancer is the removal of 1/2 or all of one's kidney; most of the time thru laprascopic surgery. Due to the location near my aorta, I was not a candidate for lap and really didn't want to lose half or all of my left kidney anyways. I ended up getting RFA (radio-frequency ablation) of the kidney cancer in March this year through my new PPO! (Last year, the RFA finished off the chemo-reduced liver mets). 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 |
Posted By: Bunnysmama
Date Posted: Jun 22 2007 at 5:37pm
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CalGal, forgive me if I'm being dense (chemo brain??), but I'm trying to work out how this all happened to you. Your initial diagnosis was IDC on the left breast and DCIS on the right. When were you diagnosed? What was your initial treatment? And then once you finished treatment for that, it was 15 months later that you went for your mammo and was told it was clear, only to find the 2 cm lump 2 months after that? Were you aware at that point of the mets, or did that become apparent only through the CT scan? And the kidney was picked up at the same time? How were you treated for the recurrence of bc and liver mets? You mentioned it was chemo...how was treatment different the second time around? Was anything being done for your kidney during treatment for the bc and mets or did they treat one and then the other?
Sorry for the million questions. I think you're an inspirational success story for beating it all, and I'm sure we can all learn from your experiences. Thank you for sharing them with us! |
Posted By: CalGal
Date Posted: Jun 23 2007 at 8:20am
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Hi Bunnysmama - No apologies needed ... as both my onc have said, I have a very unusual and complicated dx ... 9/04 - 2.2 cm IDC on the left; DCIS on the right 10/04 - Bi-lat lump's, SNB - all clear! 11/04-12/04 - 38x rad'tn on the invasive side 10/05 - Mamm (showed lump, but rad missed it). When I met with my surgeon I asked to see it, but he had not seen it and said it was fine but he would look at it. 12/05 - I found the lump, determined to be recurr bc. I again asked to see the mamm and now it was "lost" after being in my surgeon's office. I again asked for a CT Scan and got one ... I only figured I had more bc and really the correct thing would have been to ask for a MRI ... but I also kind of thought that I should have had a CT on my initial dx. CT scan and then later, a PET scan both lit up in the liver and kidneys. The kidney cancer was referred to as an "incidental find" ... The real advantage was that both my liver mets and kidney cancer were found early, while asymptomatic. 2/06-4/06 - 6 dose dense AC. Tumor responded immed. After 3, it was gone, but I pushed it to 6. Positive for BRCA1. 6/06 - Radio-frequency ablation (RFA) of liver mets. The liver mets were the most critical part of my dx ... We had all agreed to "watch" my kidney ... 8/06-11/06 - Despite being NED for bc, I did 5 Taxotere & Carboplatin. 3/07 - RFA of my kidney. Again, I did a ton of research and my treatment was not what was proposed by my HMO. It would have been 4 AC, then 4 Taxol. Plus, I had to fight to get RFA of my liver mets ... and they would have never done it for the kidney cancer. But, due to my emplyer's annual "open enrollment" I was very fortunate to be able to change insurance, effective 1/1/07. 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 |
Posted By: lucky
Date Posted: Jun 23 2007 at 11:25am
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Hi Peach,
Thanks for posting your type of breast cancer for me.
If I'm not mistaken, the grade is also referred to as Nottinghill Grade.
Mine is Nottinghill Grade II/III
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date Posted: Jun 23 2007 at 12:07pm
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Hi CalGal,
Gosh you've been thru alot. My prayers are for you and everyone on here and anyone who goes thru what we are going thru.
For me, it's extremely frustrating because my cancer is sort of like the ignored, or forgotten cancer that affects 1 - 1.4% of the population.
Pharmaceutical companies don't feel it's worth putting any money into research for this 1 - 1.4% of the population.
I am triple negative and that accounts for 10-15% of the population. BUT,
the fact remains that my cancer is clear cell of the breast which is only
the 1 - 1.4% of the population. I am glad companies are finally getting on the ball with researching triple negatives because it will save thousands of lives. However, the research is being done on the triple negatives that are the more common forms of cancer like Invasive ductile and even medullary.
So there will be no way to determine if my "glycogen rich clear cell carcinoma of breast" ( clear cell of the breast - for short ) will even respond to whatever drug they create for triple negatives.
Clear cell cancer is Usually found in the kidneys. They scanned my kidneys, and every single other part of my body and, there was no evidence of it there. So when this type of cancer show's up in the breast and some lymph nodes - it's like - where did this come from ?
They are surmising that it then has originated in the breast which is just about unheard of.
No one is even sure if it is a subtype of anything because no one is looking into it anymore. It was first detected in 1981 and a sort of hit and miss reseach was done on it for a while - and then it was just abandoned.
Given the number of cases of breast cancer diagnosed each year - and if you multiply it by 1 - 1.4% - you wind up with thousands of people who have clear cell of the breast.
However, because No statistics are being kept, and no studies are being done on the people who have it - what chance do any of us clear cells have to survive. It's pretty slim.
But, I am happy whenever I hear good news about all the members on here!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date Posted: Jun 23 2007 at 12:17pm
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Thank you momtopebbles!
I wish you well also!
 Wouldn't it be great if they had a triple negative convention that we all could go to - at their expense ?
 Everyone else - Please post your type of breast cancer. I've seen mostly invasive ductile and medullary.
What other kinds of triple negatives are around here ???
I really think it's worth knowing what other breast cancers are triple negative.
Thanks everyone!!!!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: liven42day
Date Posted: Jun 27 2007 at 4:13am
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Hi, I was diagnosed with IDC Stage II, trip neg, 2.4 cm tumor, on June 12, 2007. I had excisional biopsy on June 5, 2007 with positive margins. I have sentinel node surgery on July 2, 2007 and they are going after clear margins, then I start chemo, then 6 weeks of rads. Because I am trip neg, the Dr's said there is no further treatment after chemo and rads., this is correct? Thank you for any responses Charlene ------------- Diagnosed 6/12/07 IDC Stage II, grade 3, trip negative, 7 negative nodes, 8 rounds of chemo 4xA/C done, 4x Taxol, almost done with chemo, then onto 35 rads |
Posted By: trip2
Date Posted: Jun 27 2007 at 7:36am
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Hi Charlene, what a pretty name. I am so sorry to hear you've been diagnosed with breast cancer, it is such a scary time when this happens but things will soon fall into place for you, right now you have alot of doc visits I'm sure, stress and worry, info whirling in your head. Do you have a good support system close to you? Are you recovering well from your biopsy?
We will be right here to help you if we can with any questions you may have or to vent or cry or hopefully steer you in the right direction w/links or advice.
As of now there is only chemo and radiation for triple negative breast cancer tumors but the good side is that they have some great chemo meds out there and our kind of tumors respond well to these meds. Also they are starting to pay more attention, I think, I hope, to us triple negs and looking at more chemos to offer for treatment.
Let us know how your sentinel node surgery goes, hope it is a smooth one for you,
hugs,
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Bunnysmama
Date Posted: Jun 27 2007 at 9:48am
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Hi Charlene,
Welcome to the dark sorority. Being diagnosed with cancer is one of the most life-changing experiences you can encounter, but you can go forward knowing that you now have legions of women (starting with us!) whom you can count on and trust for support unconditionally, constantly, and completely. We are here for you. I have met more wonderful people through my experience with breast cancer than I ever could have imagined and never would have met otherwise. I also found strength and belief in myself that I never knew existed.
Good luck with your sentinel node and margin surgery. I went through the same process. My first surgery was to remove a lump that my doctor throught was benign, and it wasn't until a pathologist examined it that it was determined to be cancerous. I had to go back for a second surgery to remove additional margin tissue and lymph nodes. I recovered quickly from the first surgery, but I wasn't prepared for the lymph node surgery. I don't mean to scare you, but the lymph node surgery can be more difficult in terms of recovery. There are far more nerve endings under your arm which makes the area much more sensitive. If you go into the surgery knowing that, you can give yourself more of a break during your recovery period. Get plenty of rest and don't try to take on too much too soon.
Please let us know how you're doing. You're in my thoughts.
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Posted By: lucky
Date Posted: Jun 27 2007 at 6:02pm
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Hi there,
Thanks for posting your type of cancer.
For the most part it's correct.
My situation is different in that my oncologist is part of a research team that is trying out a drug called clodronate on me.
My cancer is so rare - and with a very high rate of re-occurance- that they want to try any possible thing that may prevent or delay cancer from metastasizing to my bones.
Here is a link about it
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17062718&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum - http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17062718&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: trish
Date Posted: Jun 27 2007 at 7:06pm
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Hi,
Invasive ductile, Stage IIA, Grade 3, Triple Neg.
(4.5 cm, negative sentinal node, plus two additional neg. nodes/ clear margins)
BRCA 1 and 2 negative
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Posted By: lucky
Date Posted: Jun 28 2007 at 8:28am
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Thanks for posting that Trish.
It's just incredible that most triple negatives seem to be Invasive Ductile and medullary.
I haven't yet seen one post about a person's triple negative being Lobular or the kind I have.
I hope doctors are being made aware of this because if there is some unusual reason for this - then perhaps it would help them find a new drug to help all of us.
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: annw
Date Posted: Jun 29 2007 at 6:01pm
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Back in 1992, when I was diagnosed with breast cancer at the age of 37, no one knew anything about triple negative breast cancer (or even taxol!). My cancer was triple negative, invasive ductal, Stage II, Grade 3, 1.6cm and 7 positive lymph nodes. All of my prognostic indicators but one were negative (they didn't know about HER 2 neu status then either). I had a mastectomy, 6 months of chemo (adriamycin, cytoxan, vincristine, methotrexate, and 5-FU), and 6 weeks of radiation. I chose to have a prophylactic mastectomy on the other side three years later.
I'm now 53 and my children, who were 4 1/2 and not quite 8 when I was diagnosed, are now a junior in college and a college graduate.
Keep hoping and working for a cure and better treatments.
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Posted By: lucky
Date Posted: Jun 29 2007 at 9:41pm
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Hi annw,
I love hearing this kind of good news! I think it gives all of us a renewed faith in the doctors choices of chemo, surgery and radiation.
Your children must be so proud of you - as you are of them !
 Hope floats!
Thanks so much for posting the name of your breast cancer.
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: Suzanne
Date Posted: Jun 30 2007 at 7:18am
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Hi. In January, I was diagnosed with IDC, Grade 3, Stage 1, triple negative, no nodes but a lymphatic invasion, clear margins, 1.56 cm. I had a sentinel node biopsy and lumpectomy, 4 rounds of AC dose dense, and 4 rounds of Taxol dose dense. I'm now half-way through 30 radiation treatments (25 plus 5 boosts). I'm 56 and Caucasian with no history of cancer in my family.
I usually don't post but am happy to do so if there is any chance this information can be useful to others.
It seems as though the medical community doesn't really know what to do with the triple negatives. I just read that anthracyclines (which includes adriamycin, the "A" chemo drug in "AC") only help 8% of breast cancer patients. (You can ready about that and see a TV clip at http://www.msnbc.msn.com/id/19048185/ - http://www.msnbc.msn.com/id/19048185/ .) Is there any good news out there anyone can share?
Suzanne
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Posted By: cas145
Date Posted: Jul 01 2007 at 1:59am
| Hi this is my first post on this forum I was first diagnosed in March 06 with DCIS to right breast had a radical mast 16 nodes all neg Grade 3 Stage 2 Trip neg I had 6 rounds of FAC. I have just been diagnosed in May 07 again on right side in node scar with DCIS Grade 3 Stage 2B Neg/Pos still being tested. I will start chemo again on Monday with Carboplatin and Docetaxel followed by rads. Cas |
Posted By: jmkearns
Date Posted: Jul 01 2007 at 6:01am
 Hi,I have a rare type of TNBC called adenoid cystic carcinoma. My 2005 mammogram showed a cyst that the radiologist thought was just a cyst. (If I knew then what I know now I would have insisted on having it drained or tested with a needle biopsy.) My 2006 mammogram showed that the cyst changed shape and after a surgical biopsy proved to be cancer. The lesions turned out to be 4CM in size even though the mammogram showed it was about 1.4CM. Lumpectomy sentinel node biopsy showed the lymph nodes were clear. I finished my chemo on March 7, 2007. I finished my radiation on May 18, 2007. This weekend I am gardening and living as full a life as I can. My energy is back and I am full of gratitude. Peace to you. Janine |
Posted By: CalGal
Date Posted: Jul 01 2007 at 11:24am
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Ann - It's so great to hear that you, a triple negative, have been cancer-free for 15 years!! That is wonderful! I wish my mother had been so fortunate ... she was dx'd in 1987 at age 46 and then had a new primary in the other breast in 1992, and a recurr of the orig bc in 1997, passing from bc mets in 2000. She had bi-lat mast (5 yrs apart) and did a ton of chemo ...and had a much worse time of it than me. (Much better meds now!) Although no one referred to "double negatives" at that time, I remember her being very disappointed that "her cancer wasn't the right type for Tamoxifen" (the wonder drug at the time). As I'm BRCA1, I'm certain she also was as well as being a trip neg. Did you consider the BRCA test? Best to you, 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 |
Posted By: annw
Date Posted: Jul 01 2007 at 11:31am
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CalGal,
I did have the BRCA1 and 2 test since I have two daughters although no one in my family (going back 200 years on both sides!) had ever been diagnosed with breast cancer before me. I was negative for both BRCA genes. However, my older sister was diagnosed with breast cancer last year--two different primaries (and two different types of cancer--invasive ductal and invasive lobular) in the same breast. Our 85-year-old mother once had a biopsy (many years ago) but it was benign.
I worry for my girls, and tell them to be vigilant.
|
Posted By: lucky
Date Posted: Jul 01 2007 at 9:56pm
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Hi,
Thanks for posting your breast cancer type. I've done a number of posts on why I think the name of the breast cancer is extremely important in addition to it being triple negative.
Yes, I believe whatever info anyone shares on here has a way of helping all of us.
Thanks everyone !
I think the good news lies in exactly what researchers are researching.
Are they only looking at the triple negative status, or are they also looking at the type of cancer in occurs in.
Interesting to note is that most triple negatives seem to have Invasive ductile. Haven't yet seen anyone who has lobular triple negative, or clear cell breast cancer.
-----------------------------------------------------------------------------
QUOTE=Suzanne]Hi. In January, I was diagnosed with IDC, Grade 3, Stage 1, triple negative, no nodes but a lymphatic invasion, clear margins, 1.56 cm. I had a sentinel node biopsy and lumpectomy, 4 rounds of AC dose dense, and 4 rounds of Taxol dose dense. I'm now half-way through 30 radiation treatments (25 plus 5 boosts). I'm 56 and Caucasian with no history of cancer in my family.
I usually don't post but am happy to do so if there is any chance this information can be useful to others.
It seems as though the medical community doesn't really know what to do with the triple negatives. I just read that anthracyclines (which includes adriamycin, the "A" chemo drug in "AC") only help 8% of breast cancer patients. (You can ready about that and see a TV clip at http://www.msnbc.msn.com/id/19048185/ - http://www.msnbc.msn.com/id/19048185/ .) Is there any good news out there anyone can share?
Suzanne [/QUOTE] ------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date Posted: Jul 01 2007 at 10:04pm
|
Hi,
When all your treatments are done with - please consider having the other breast removed.
I had a double mastectomy even though the cancer was only in One breast. I also had 26 nodes removed from the side where the cancer was ( Left side )
Wish you very well with your next round of treatments and thanks for mentioning your specific type of breast cancer!
Please let us know how it all goes!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: lucky
Date Posted: Jul 01 2007 at 10:13pm
|
Hi,
There is another member or members on here with your type of rare cancer. Mine is rare also.
I agree - everyone should insist on having a cyst or any lump in the breast removed before it can change into something else.
Hope everyone is using a high strength of suntan lotion when they are outside once the radiation has Stopped !
Using suntan lotion before the radiation stops and your skin is clear - causes the radiation not to work properly.
And - to have the maximum protection from the sun's harmful rays - please make sure your suntan lotion contains the ingredient called
Parasol, or Avenbenzone.
Happy gardening !!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: trip2
Date Posted: Jul 02 2007 at 8:13am
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Welcome cas145 to our group and that sure stinks you've been diagnosed again on the same side. Are they calling it a recurrence or a new primary? Let us know what your test results are, will you?Just makes me shake my head, here you are headed back to chemo today, I so understand.
 I too am going thru my second dx and halfway thru Taxotere treatments.My very best wishes for a smooth treatment time for you. Please keep posting and let us know how you are doing, we will just have to do some more fighting, that all!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 02 2007 at 8:21am
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Welcome Janine! I believe this is the first time I have heard of your type of TNBC. Congratulations on finishing your chemo and rads, what a relief huh?
 It is refreshing to hear you are gardening and living life as full as you can, you deserve some enjoyment now, you've been thru alot.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 02 2007 at 8:25am
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Wow Ann it that is fantastic.
Congratulations and thank you so much for sharing some good news. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: jmkearns
Date Posted: Jul 02 2007 at 3:02pm
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Thank you for the encouragement. Thankfully I am young (46) and otherwise healthy. I was able to bounce back and for that I am grateful.
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Posted By: Griffin
Date Posted: Jul 04 2007 at 8:51pm
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Hi everyone I had a lymph node at the bottom of a duct which was a mixture of primary and metastases, 8 out 20 +ve nodes, nearly five years ago. 8 FEC 30 rads. Recurrance ductal, non invasive, caught early, same duct but higher up, last summer, mastectomy, no further treatment. The recurrence was assessed as radiotherapy failure. |
Posted By: trip2
Date Posted: Jul 05 2007 at 2:29am
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Hi Griffin and welcome!
It's really good to see you here.
Sorry to hear you had a recurrence but glad to hear they caught it early.
I'm so happy to hear things are ok now, you've been thru alot.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: JaneRA
Date Posted: Jul 05 2007 at 3:23am
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Mine is ductal. Grade 3, Stage 3, 23/25 nodes at diagnosis Oct 2003.
April 2007: regional stage 4 recurrence in chest wall and supraclavicular nodes.
Jane ------------- Jane |
Posted By: trip2
Date Posted: Jul 05 2007 at 4:24am
|
Hello Jane and welcome.
It is so crappy that you have had a recurrence, how are you doing with your treatments?
Warm hugs and best wishes to nip this in the bud this time.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: JaneRA
Date Posted: Jul 05 2007 at 5:05am
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Hi Trip
Thanks for yur good wishes
Yes its crappy...and I'm hoping for remission though been told only partial remission expected. ..for who knows how long???? This is according to my oncologist 'the good end of stage 4' ie. not curable...but hope for 'management' for as long as possible.
I am having a combination of 6 cycles of navelbine and xeloda, the idea being to keep me on xeloda afterwards for as long as it works. Just done 2 cycles but had very bad diarrhoea this time with xeloda so had to stop...waiting for oncologist's view on whether to resume (see her Monday.) Doing the two together is a bit of a gamble...better trial results than singly but when it fails you've lost 2 options together.
My remaining options are limited when/if this combo stops working (assuming it is at least a bit as one lump shrinking)...one of the platinum based chemos...cisplatin or carboplatin, gemzar, and possibly a revisit to taxotere or taxol (had taxotere already.)
Avasitin which is used for secondary bc in USA is not licensed here in UK.
I'm hoping to live long enough to see more spotlight on triple negatives but utterly realistic that there's pretty nil chance of 'nipping it in the bud' for good. C'est la cancer. C'est la triple neg cancer.
very best wishes
Jane
------------- Jane |
Posted By: trip2
Date Posted: Jul 05 2007 at 6:14am
|
Well we will be praying for remission for you to have a long and healthy life. They are already calling breast cancer chronic so there isn't really a cure, all we can hope for is remission and I feel so bad for those who have had it go onto other major organs or bones as this must be very stressful but hopeful as there are more meds available now than before so we've got to hang onto hope and drive ahead to see if we can get answers.
Is Xeloda a pill? We have a product here called Imodium AD which works great for diarrhea, do you have something like that in the UK?
Let us know what you find out from your Onc Monday after your visit, ok?
Hopefully doing the two meds together will work for you. That is good that the trial results proved better to do them together.
Try not to worry about the what if's, I know it isn't easy, we all do it, nearly impossible sometimes and take it a day at a time if you have to.
Sometimes when I read someone saying that I want to scream at the puter, lol, I feel like I'm pretty realistic and know that we have a hard fight and you are going thru a even tougher fight right now but let's get out the boxing gloves and go for it!
Hugs, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: JaneRA
Date Posted: Jul 05 2007 at 6:35am
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Hi Trip
Yes xeloda is a tablet (oral chemotherapy) and yes we do have immodium here! but sadly it didn't touch my diarrhoea for 24 hours.
As to 'what ifs' well....by realistic I mean just that..I'm 58 and am not going to get a long life now but I'll be pretty happy right now if I get a year in remission and then we'll take it from there. I know that new tretaments are not going to come along in time to save my life unless I have unusual and exceptional and unlikely good luck. I consider myself very lucky to have lived well for 3.5 years past diagnosis. And I'm doing my best to live as well as I can in the shortened time I inevitably have left.
Those who know me from UK forums know I call a spade a spade...I expect to die from breast cancer (wow I've said it) but I don't think saying it means that I'll get a shorter life or a more miserable life, or that saying its means I've 'given up'..it just helps me to be straightforward rather than euphemistic....oh and I don't do prayer or fighting cancer either.
very very best wishes Jane
------------- Jane |
Posted By: lucky
Date Posted: Jul 05 2007 at 12:13pm
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Hi,
I sure know what you mean about the "what if" factor. I have one of the rarest and most "sneaky" breast cancers known. Most people never even heard of it and some doctors say "whaaat ....... kind do you have ??
They're actually in disbelief. As you may have noticed in my posts -
it's called "glycogen rich clear cell carcinoma of the breast." Rare is one thing - but to have it also known to be an aggressive one that suddenly
sneaks up on you AND - no one is even researching anymore - well,
That is really distressing to me and whoever else develops this kind of breast cancer. I contacted several cancer organizations trying to find out more info on this type - but always got the same answer: " because it is rare, we are not keeping stats on it." How illogical is that now ?
AND - there is little info on it on the Internet because of that.
Some of my friends tell me " you never know because what if a miracle happens and suddenly they know how to treat it." My answer is "how can they ever figure out how to treat it - if they are not researching it and no one is keeping stats on it?" A catch 22 situatation for me.
I also hear "what if" a miracle happens and it never comes back."
Well, the incidence of re-occurence in my type of cancer is alot higher than in the more common forms of cancer and because the chemo had no effect on the cancer at all, and in fact, the taxotere had to be stopped on me because of an extreme reaction to it - well, if it does re-occur in me somewhere - they've told me that the only thing they would be able to do is give me a very, very low dose of chemo but not taxotere, and then I would be considered to be a palliative patient which is also known as
hospice, depending on where one lives. This means that all they would be able to do for me - is to make me feel comfortable.
I'm 57 and I used to think that when I turned 60, I would have some major kind of party blow-out. Now - who knows if I'll even reach that age. I'm trying to make people aware of my kind of cancer AND
the triple negative factor because it's not only about me - but about all of us who have triple negative components, a rare cancer, or a high stage or grade.
People always will tell me they know of someone who beat breast cancer.
Then I ask them what kind they had - and it's always the same answer - the most common kinds.
I print stuff off of my pc on clear cell AND on triple negatives. Whenever someone tells me they know of someone who has or had breast cancer, I give them what I printed out about US. I'm hoping that the more it's talked about - the more people will become aware of our plight.
About your stage 4, I can only tell you what happened to a friend of my Mom's. She was at a stage 4+ ! and in and out of hospitals and
hospice facilities.
THAT was 10 years ago!! She's still with us!! It turned into a chronic cancer for her and she's still kicking and is living alone and doing really well. She lives in Florida and whenever I am well enough to travel, I've seen this woman. It's unbelievable but true! So now, none of my family even ask how her case is possible because it doesn't matter - it just IS.
I agree in calling a spade a spade, and what I've been told by my oncologist ( who is from the UK ) is that the longer you live after being diagnosed, no matter at what stage, the better chance you have at living even longer. I believe him.
Best to you!
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: JaneRA
Date Posted: Jul 05 2007 at 10:13pm
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Hi Lucky
I have heard of a woman in the UK with glycogen rich clear cell carcinoma but can't remember where. If I do will put you in touch with each other. Though there may not be stats some oncologists must keep case studies at least so you could get some idea of possibilities, prognoses etc. When something is rare it is hard to keep meaningful stats.
Thanks too for your thoughtful remarks on the what ifs.
The lack of ordinary conversation about the facts that breast cancer can end up in premature death is one of the things which bugs me about having the bloody disease. I am interested in the language which is used about cancer, in the myths and fantasies and fears it engenders, and this is why I take issue when people (with the best of intentions) appear to deny my reality with calls to 'think positive' , 'fight hard' or 'pray for a remisson.'
I too know the unusual and remakable miracle stories and know they happen. I know that people can live many years with much more advanced disase than I currently have. I also know that aggressve cancers can kill quickly.
I would like a cancer community in which it was possible to talk ordinarily about these two sides of the coin so to talk about how to live life knowing its almost certainly shortened without having a ton of bricks come down on my head for somehow lowering the tone of the conversation.
I don't know what is going to happen to me and if I live till I'm 80 against all the odds then thats a bonus, but I refuse to shut up about the possibility I might be dead this time next year or more likely the year after that. In the meantime I am living as well as I can and ticking off the essential things I want to do before I die.
hope this makes sense. To talk of dying is as taboo as talk about sex was in Victorian times. Why?
Jane ------------- Jane |
Posted By: lucky
Date Posted: Jul 05 2007 at 11:02pm
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Thanks Jane.
What is happening here in Canada and the US is that while clear cell of the breast is in the doctor's notes - the cancer registries in the US and Canada receive the info from the doctor's but the registry doesn't feel it is obligated to document it as clear cell. In other words - it is clumped together with all the other breast cancers.
Because everything is computerized, if the cancer registry is Not distinguishing a rare cancer from the other types of breast cancers, then
whenever any researcher or doctor in the world comes across a patient who has clear cell - they have No way of finding out who else in the world has it.
I also contacted the American Cancer Society, and received an email back from them Also saying that they are not keeping stats on this rare form of cancer. Because of this - they replied that they do not know how many cases of it even exist in the States. I also wrote to the Susan G. Komen Cancer Foundation about it and they replied back which put me back at square one so to speak. They said they never even heard of it - it's not even in Their data base - and that I should contact the American Cancer Society. I told them I already did that and all they could say to me was - "we wish you the best of luck in your fight against your particular type of breast cancer." I saved all the emails and phone messages from all these organizations in case anyone else ever agrees with me that this is a sort of forgotten cancer.
However, Jane, if you do come across that other woman who has glycogen rich clear cell carcinoma of the breast, I would really appreciate being put in touch with her. She's probably also finding hard to locate someone else with it.
Yes, I too always hear about thinking positive. I always did - even when I was first diagnosed. I couldn't wait to get into treatment and even managed to keep a sense of humor while I suffered thru chemo, a double mastectomy and 26 lymph node removal, and then 25 rounds of radiation.
The treatment technicians actually told me that I made them feel better whenever I came in for my treatments. Well, I figured that at least I was making Someone happy during those treatment days.
I often think about not making it. I'm a positive person but I'm also human. When my sister came to visit me from the States, I took her to meet my oncologist. After a lengthy discussion of what I have - she asked him when I will finally be out of the woods. He answered with
" she will never be out of the woods with this kind of cancer."
After we left his office - I couldn't help but repeat those words to my sister. She's got a great sense of humor also, and said " well, you always liked going to the country woods." LOL
I actually laughed about it also. We are all positive thinkers and at the same time we are also very realistic. That's why I always emphasize in my posts that my chances of surviving are quite slim ( which they are) - and also at the same time - joke about almost anything that's going on in my life.
Sort of what is referred to as comedie noir. - a dark comedy of my life.
------------- I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ??? |
Posted By: trip2
Date Posted: Jul 06 2007 at 3:47am
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Jane I too am realistic and don't react like many do but we all as individuals have to find our spot in our minds on how we wish to handle this disease so comments vary and each person has their way of handling and responding to others. I know you from one of the UK boards, think alot of you and really want you to get well or atleast in remission so that you can have a good quality life, I wish that for you.
I'm with you and not so sure on the fighter attitude although I have been trying to find other words that feel right to me, a thing I am going thru right now. I have my issues also with the word survivor and processing that one as well. Not that I am sure I won't survive for awhile or hopefully a few more years but I figure cancer will probably be what gets me. I'm 60 and have had bc twice. My oldest daughter has been diagnosed w/bc, we are both positive for BRCA 1, I'm the oldest living relative left in our tiny family, other than a sis and our families they are all gone from cancer and at very young ages.
My mind was telling me last fall in subtle ways that cancer was coming back,I knew it and it did. I also feel it will be back again and if I'm right then I'll deal with it at that time but it is all starting to sink in this head of mine.
A little sidenote on the Immodium AD, my Onc nurse had told me to take it at the first sign and continue.
I suppose you did that and that's a bummer it didn't work for you. Maybe there is something else on the market that might work or they can write a script for you??
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sstefano
Date Posted: Jul 06 2007 at 4:02am
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Hi, I was diagnosed in 1997 with stage 3 invasive ductal, grade 3, 4 lymph nodes - 4 AC, mastectomy. Then again I was diagnosed in 2004 in the other breast with stage 2, grade 3, only lumpectomy. I had local recurrence in 2006, grade 3 - mastectomy, xeloda. Stef
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Posted By: trip2
Date Posted: Jul 06 2007 at 4:09am
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Hi Stef and welcome to our community.
My goodness you have had a time of it in the last few years, I am so sorry to hear this. How are you doing now?
Please feel free to write in with any comment, news, vents, whatever is on your mind. This is a great place for us to come together and create a voice. This a great group of trip negs.
Don't forget to vote in our polls!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: JaneRA
Date Posted: Jul 06 2007 at 7:27am
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Thanks Pam
I feel I kindof may have sounded a bit sharp...some words just get my 'crumple butttons' going. Sorry.
I talk about 'living with cancer' and for what I'm going through now its 'enduring treatments', 'struggling with treatments', 'putting up with treatments' I really try not to talk about 'fighting the cancer' cause I don't like military metaphors for dealing with cancer. Also I don't want to give cancer power it doesn't have. The problem with fighting is that it implies winning and losing, and if/when cancer kills me I just see it as that: the disease killing me.
And of course I hope so much that my cancer goes into remission, that I get as much more life as I can.
I'll be talking to onc about other diarrhoea remedies. I imagine she will probably reduce the xeloda dose, though I think she thinks my extrem reaction might have been a stomach bug.
I'm so sorry your daughter has bc too. I think my own cancer is probably a genetic one but no females to test theroy out on. May not be brca1..but something as yet undiscovered...but that's for another thread.
------------- Jane |
Posted By: trip2
Date Posted: Jul 06 2007 at 7:45am
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Jane, no need to say sorry. Heck we all get our "crumble buttons" going sometimes and it's good that we speak honest.
You can write here anytime w/whatever is on your mind.
You are right too Jane, I think there are possibly loads of mutations or genes yet to be discovered.
Take care, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: jazhuzz
Date Posted: Jul 06 2007 at 9:12am
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Hello One and All!
My dx is my signature. (makes it easier to have it on hand for replies!)
I have had the lumpectomy with clear margins and am beginning a clinical chemo trial on Thursday July 12th. Radiation to follow chemo.
CTSU/SWOG S0221: Phase III trial of continuous schedule AC + G VS. Q 2 week schedule AC, followed by Paclitaxel given either every 2 weeks or weekly for 12 weeks as post-operative adjuvant therapy in node-positive or high-risk node negative breast cancer.
(phew...couldnt they come up with a shorter title?) This clinical is from the National Cancer Institute and more info can be found there if you are interested.
♥Julie
------------- 46 YO Michigan diagnosed 6-1-07 lumpectomy 6-11-07 IDC 3.9cm tumor right breast T2, grade 3 no node involvement (12 nodes removed) triple negative carepage: juliesprogress |
Posted By: Lisa L
Date Posted: Jul 06 2007 at 12:53pm
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New here, heard about this site on Komen boards. My dx is in my signature below. ------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: trip2
Date Posted: Jul 06 2007 at 1:15pm
|
Hello jazhuzz and welcome!
Your clinical trial sounds very interesting, I hope you'll keep us posted on how it is going for you and what you think about it. Best of luck on the 12th and I hope everything goes as smoothly as possible for you.
I'm currently doing Taxotere for my second round of BC.
So glad you posted and please jump in anytime when you want to visit or ask a question, this is a great group of ladies.
Oh and jazhuzz, please vote in our new polls we just set up and if you can think of another poll that would help us collect info on triple negs please feel free to start your own.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 06 2007 at 1:21pm
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Hi Lisa and welcome. I'm so glad you have joined up. This is a great group and we are trying to gather up as much information as we can,
sharing w/others and trying in our own way to come up w/some thoughts on our triple neg dilemna.
Hope you'll vote in our polls and if you can think of a new one please feel free to start a poll of your own. This is helping us gather our stats here in the group, a good starting point.
Congratulations on being NED!
Have a good evening, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: liven42day
Date Posted: Jul 06 2007 at 4:34pm
|
Well, Node surgery went well as it could, I guess. They couldn't do the sentinel lymph node, they said the radioactive dye didn't move....? So they did an axillary lymph node removal (7 nodes and preliminary reports show them all clear) the surgeon told me they still have to screen the nodes.......I don't know what she is talking about. But she got clean margins around the original tumor also, so I think I am pretty happy with those results . I want the best chemo treatment to fight this horrible monster, I have an Oncology appt July 13 (Oh joy Friday the 13 th) I hope to find out then what kind of mixture I am getting. I am staying upbeat and waiting to get the ball rolling. ------------- Diagnosed 6/12/07 IDC Stage II, grade 3, trip negative, 7 negative nodes, 8 rounds of chemo 4xA/C done, 4x Taxol, almost done with chemo, then onto 35 rads |
Posted By: Bunnysmama
Date Posted: Jul 06 2007 at 5:00pm
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liven,
I'm so glad the surgery went well and, at least for now, your nodes seem to be clear. Was it the frozen section or "quick look" that showed them to be clear? If so, that may be why they still have to do the screen and give you a final report. So far, though, that is excellent news.
Keep us posted. Best wishes for an easy recovery from the axillary node surgery. Who knew the armpit could be so sensitive???
|
Posted By: trip2
Date Posted: Jul 07 2007 at 5:20am
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Hi Liven, I'm so glad your node surgery went well and the prelim reports show the nodes were clear.
Let us know what you learn when they screen them. I am not sure what that means, is it a second look I wonder of some type?
Also congrats on the clean margins, that is great!
It's so good to hear you are upbeat and ready to get the ball rolling.
Waiting for all of this to fall into place can really be a stressy time but once we hit the treatment chair we feel like we're doing something.
Keep us posted on what you find out from your Onc!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: deb522
Date Posted: Jul 08 2007 at 12:17am
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I was diagnosed in September with
Invasive Ductal Carcinoma of the left Breast: Grade 3 - Stage 2 Insitu was found in my right breast after the Bi-Lateral mastectomy was done. I am also a 20+ year survivor of Hodgkins Disease. I was treated with radiation to the chest wall in the Eighties. This increased my chances of breast cancer I am told. I had complications (Congestive Heart Failure)due to the chemotherapy, so I was taken off it about 2/3 of the way through treatment. I am doing much better now and my heart function is coming back. Glad to be part of the forum 
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Posted By: trip2
Date Posted: Jul 08 2007 at 3:26am
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Welcome Deb, we're so glad you've joined our community.
This is a great group of ladies so jump in with any information
you might have, questions, vents, whatever is on your mind.
Boy I am so sorry to hear of your complications of congestive heart failure and due to chemo! How scary for you, you've sure been thru alot and I'm so glad you are doing better now.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Kaybe
Date Posted: Jul 09 2007 at 3:05am
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Hi Everyone, This is my first post here and I'm from Melbourne, Australia. It's good to see some of the other Melbourne girls I've met also on this site. I've added my details to my signature below. Just also wanted to say that Ann, you really lifted my spirits tonight with your inspirational post. I have two small children, 3 and 5 1/2 and I only hope that my bc does not return so that I can be here for them. I lost my mum to bc when I was 8. She was only 36. There better be a cure by the time my daughter grows up! Looking forward to learning more about triple neg issues. Kaye. x PS - Can someone tell me what NED means? ------------- At age 40, Dx Sept 2006, Family history Bilat Mast, Grade 3 IDC, 55mm + 2mm found same breast. Axil Clearance 1/24 nodes pos. 4 x AC, 4 x Taxol, 25+5 rads BRCA neg |
Posted By: trip2
Date Posted: Jul 09 2007 at 3:11am
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Hello and welcome Kaybe to our community!
NED means "no evidence of disease".
That is so very sad that you lost your mom at the age of 8 to bc at the young age of 36.
I'm so sorry.
I lost my mom when she was 46 to ovca back in 71, I was grown but my sister was only 13 at the time.
We're gonna find that cause and cure one way or another!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Vicki G
Date Posted: Jul 09 2007 at 2:15pm
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Hi girls,
Well, I guess I've lurked long enough! I only joined last week and am thrilled there is a special place for us special girls! I was diagnosed (at 45) on 11/17/04 and had a lumpectomy a few days later, on 11/24/04. Tumor was 1.8cm on left side. IDC, 1 lymph node out of 10 was positive. In January of 2005 I started Tx with 4 AC and 4 Taxol, dose dense, followed by 33 rads. I am happy to say that I am quickly approaching 3 years NED. (Forgive me if all that info is on my signature, I still have some left-over-chemo-brain...!!) I recognize a few names from the Komen boards which is where I heard about you. I still lurk there occasionally too! I've been divorced for 5 years now and am a single Mother of 2 kids. A son 16 and a daughter 13. Yes, they are making me crazy - between their teenage hormones and my lack of hormones due to early menopause - I could scream!! No history of BC in my family but my Mother died of colon cancer in 1972 when I was 12 years old. The nurse at my surgery says there is a possible link...anyone else hear that? Born and raised in Southern California, San Fernando Valley. Good to know there are others like me out there. Take care, Vicki ------------- Lb Lumpectomy, IDC, Stage 2, Grade 3, 1+ node, 4 x A/C, 4 x Taxol, 33 x Rads. NED almost 4 yrs. Los Angeles, Ca. |
Posted By: Bunnysmama
Date Posted: Jul 09 2007 at 4:06pm
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Hi Vicki, Welcome! Happy to have you join us. Congrats on being almost 3 years NED - that news is always so encouraging. I'm curious about your early menopause. I'm assuming you were thrown into it through chemo? Has it been three years, meaning you're considered in permanent menopause? There's another post about this topic, but as long as we're on the subject here, could you tell me your experience with it? I just finished treatment about 2 weeks ago and haven't had my period in about 3 months. I turned 38 last week, so I have a feeling mine won't be permanent and I'll end up going through it twice.
And don't worry about the chemo brain. I recently read that it can last up to 10 years!
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Posted By: deboraha
Date Posted: Jul 09 2007 at 4:29pm
| I am a 58 year old white female. I was diagnosed with a poorly differentiated and invasive carcinoma that is triple negative. In early June I had a mastectomy. I am lucky, the cancer was not in the lymph nodes and I am in stage 1. I will be starting Chemo in the next week or so (depending on the time it takes the insurance to send the approval). I will be having a medi-port inserted before the chemo starts. |
Posted By: trip2
Date Posted: Jul 10 2007 at 1:41am
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Good morning Vicki G and welcome to our board!
We've got a great group of women here.
Congratulations on approaching 3 yrs of NED!
That is wonderful.
I had 2 teens when I had bc the first time and it's an interesting situation, lol but we made it thru.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Vicki G
Date Posted: Jul 10 2007 at 8:15am
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Hi Bunnysmama (and all),
Thank you for the warm welcome. Well, just before I was diagnosed I was having strange periods that would last forever, then no period for months. We're not sure if I was beginning menopause OR if my body was trying to tell me that something was terribly wrong...I believe it was a warning sign. Anyway, I had my last period in January of 2005 (!) just after my first AC treatment. Nothing since! My gyno said that if it has been more than a year to consider myself in full-blown menopause. After 2 1/2 years, if it hasn't come back, it won't! Fine with me really since I wasn't planning on more kids anyway. But the biggest drag is/was the severity of the hot flashes. They have gotten SO much better in the last month though. Before that, I was miserable. I was put on Effexor and that did help a little. Now I'm off of them and I only have a few night sweats and little tiny hot flashes in the late afternoon. Nothing like it used to be. I'm still grumpy though!!! You're very young and I have another friend who is your age and triple negative and her periods came back within 6 months of her last chemo. I'd give it a few months and see what happens. Good luck! Take care, Vicki ------------- Lb Lumpectomy, IDC, Stage 2, Grade 3, 1+ node, 4 x A/C, 4 x Taxol, 33 x Rads. NED almost 4 yrs. Los Angeles, Ca. |
Posted By: marathonmom
Date Posted: Jul 10 2007 at 9:22am
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Hi all,
I also just found out about this site.
Here is my bio:
I am a 39 y.o. mother of 2, dx in march 2006.
Initial tumor 4.8cm. Opted for chemo prior to sx and had
6 rounds of FEC (popular here in Canada), followed by a lumpectomy.
Sentinel node with 0 infected.
Following sx, 4 rounds of Taxotere (that was tough!!!!) and rads.
I had a scare last week after discovering another lump in the treated brest. Turnes out it is a cyst....
Good luck to all of you out there....
Oana
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Posted By: trip2
Date Posted: Jul 10 2007 at 11:53am
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Hi Oana and welcome.
Boy you did have a scare last week but that's wonderful the lump was a cyst!
Welcome to our group, there are lots of nice ladies on this board.
My daughter just turned 39 and was dx last January, she has two boys.
You are right that Taxotere is nasty stuff. I am currently half way thru my treatments of Taxotere.
Nice to have you, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 10 2007 at 11:59am
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Welcome Deboraha, it's so nice to have you join our group.
I hope you are healing ok from yor mastectomy. I had a bilateral in April and it can take awhile, hope you are doing ok.
What kind of chemo will you be taking?
Keep us posted on how things go w/having your port inserted and chemo starting for you next week. I know this can be a jittery time for you.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: deboraha
Date Posted: Jul 10 2007 at 1:54pm
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Hi Pam,
Thanks for your kind words
I'm doing remarketly well. I think I recovered quicker from this surgery than any before and I've had 6 other surgeries. Of course I still have numbness and some discomfort, but really I haven't had any really bad pain.
I will be 3 drugs: Cytaxan, Flourouracil and Ellence. There is some concern because I am post-polio and spend most of my time in a scooter. The doctor doesn't want to give me drugs that could affect my nervous system. They will be testing my heart to make sure it can tolerate the drugs. I know my heart is strong so I guess it will be full steam ahead.
Have you had or or you going to have Chemo?
Deboraha
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Posted By: Lisa L
Date Posted: Jul 10 2007 at 3:15pm
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Just wanted to say be careful about thinking you are in menopause. I thought I was because i had no period for 15 months, then out of the blue I had one, 3 months later another. I am 44. my gyno thought mine would probably not come back. I guess this is good news for those who are hoping to have children after BC, but with a 20 and 17 year old, I dont want to start over! There is a blood test you can get to see if you are in menopause or not. I think you have to wait a year after your last period to get one. My best to everyone. ------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: trip2
Date Posted: Jul 11 2007 at 2:04am
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Lisa, you just sound great, that will help you get thru your treatments as sometimes they can be hard on us and other times people breeze thru w/not too many problems. I hope you don't have too many issues with your chemo.
I haven't had the meds that you will be taking. 4 years ago I had Adriamycin, Cytoxin and Taxol. Then when I was diagnosed last Februrary, I had my bilateral mastectomy and am currently doing Taxotere. Two to go! Well I think, they said in the beginning maybe 4 or maybe a couple more so we will see. I'll do whatever it takes.
I'm sure they will watch you closely.
Best wishes to you Lisa and I hope you'll keep posting and let us know how it's going.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: victoria
Date Posted: Jul 11 2007 at 4:11pm
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I was diagnosed 9/19/2006 with triple negative infiltrating ductal cancer. At the time I was diagnosed I was 30 years old. I found my lump early so I was stage IIa. Tumor size 4cm, grade 3, no lymph nodes. I finished chemo in March and radiation in May. |
Posted By: trip2
Date Posted: Jul 12 2007 at 2:04am
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Good morning Victoria, it is so nice to have you join us. You'll find a great group of ladies here all working towards the same goal. This foundation is so exciting and gives us hope. We're trying to work on finding information for triple negs and gather some information here on our board too, so please vote in our polls when you get a chance. Jump in and post whatever is on your mind or if you have something to share or just want to vent.
My goodness you are so young to have breast cancer. My daughter was diagnosed this year at 38, this just has to be stopped. Did you have a good support system when you went thru your cancer treatments? It's good to see you've finished yor chemo and rads,what chemo did you have and how are you doing?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: teresa carter
Date Posted: Jul 12 2007 at 5:24am
| Hello, I have triple negative-Basil like(spelling) type cancer(lobular). It started as breast cancer. I was 4 years into remission and then it came back in my lungs and lymph nodes around my throat. It has affected my vocal chords (left vocal chord paralzed). I'm in the process of taking chemo. I'm doing well with a positive attitude. Teresa |
Posted By: Molennium
Date Posted: Jul 12 2007 at 10:59am
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I've answered your survey but I have oestrogen and progesterone positive glycogen-rich clear cell carcinoma of the breast.
I've found the odd articles about it but apparently it has the same prognosis as other non specific kinds of ductal cancer when matched by grade, size and stage.
I didn't think so when I was diagnosed as there was virtually nothing about it on the net and all the cases I read about were all doom and gloom
Mole
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Posted By: victoria
Date Posted: Jul 12 2007 at 5:28pm
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Hi Pam, I have been blessed to have a wonderful family and friends who have been with me through everything. I have 4 rounds of AC and 4 rounds of Taxol. The AC was a piece of cake. The taxol was another story. I had a lot of the bone and neuropathy. The neuropathy has finally subsided so I am able to be active again. Most times I am still in a fog that I have even have had breast cancer. So I have made it my mission to talk about having cancer as much as I can. I have decided to make meaning of being diagnosed with breast cancer. My hope is that my ripple effect in life is to help people with early detection. I found my own lump which is a huge blessing. I hope that the more people I tell the more people will give themselves breast exams. I wish cancer upon no one, but since I am now a survivor I hope to help save other lives.
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Posted By: trip2
Date Posted: Jul 13 2007 at 3:33am
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Hi Molennium, look for posts from Lucky, I believe she has the same kind of bc as you, I wasn't sure if I had answered this to you in another post somewhere. She's been trying really hard to find others who might have had this particular kind since there is so little information.
She may be negative though, I haven't had enough coffee yet.
Thanks so much for joining our joining our community,
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 13 2007 at 3:38am
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Victoria you have such a wonderful attitude about wanting to help others be aware and learn about breast exams and telling them about breast self exams will help too. I get the feeling there are still alot of women who are clueless even after all the bc diagnosis.
You will help save lives, we need more advocates out there doing the same.
I'm so glad you had a good support system during your treatment, that makes such a difference.
My first time I had ACT too and had a pretty rough time and yes the Taxol was nasty on the bones.
Now I'm on Taxotere and it's knocking the socks off me but I'm gonna do what I can to keep the beast at bay.
Keep up the good work!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 13 2007 at 3:42am
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Teresa, bless your heart, I'm so sorry to hear after 4 years that you bc came back to your lungs and lymph nodes. They seem to be coming up w/so many new meds to try now I really hope you are finding something that works for you. You've sure been thru alot.
What are you currently taking?
That heavens for that positive attitude and to hear you are doing well.
Do you have a good support system?
Keep us posted
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: teresa carter
Date Posted: Jul 13 2007 at 3:56am
| I am taking Abraxin(spelling) and Avastin right now. The Abraxin is affecting my vocal chords, irritating them, so when I go next week for treatment the doctor is going to change my chemo. I do have a wonderful support group that keeps me in high spirits. I noticed I misspelled Basal, it's not a spice Basil!ha Thanks for your sweet comments. Teresa |
Posted By: trip2
Date Posted: Jul 13 2007 at 4:08am
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Teresa, I'm so glad you wrote back and don't worry about that spelling, we know what you mean. I can't spell or type very well right now either w/this chemo running thru me!
With the Abraxin (sp) is this a usual side effect affecting your vocal chords so that is why the Onc will change your chemo? I'm glad he/she is doing that for you. How often do you go for treatments?
Let us know what meds he changes you too. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |