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Loricarol 
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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 Posted: May 29 2009 at 4:12pm |
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Hi Glenine
I am getting my slides over to Huntsman as soon as i get home from a brief trip to see my 84 year olf grandma. The aftet they read them i may consider Mayo or another research hospital out of Utah to give me a read as well. I would like to know exactly what im dealing with.
Thanks Lori
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: May 29 2009 at 4:15pm |
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Glenine
I cant thank you enough for that referral to the MD from Duke. I will certainly try and contact him by phone ASAP while im in Tennessee this next week. God Bless you!
Lori
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: May 29 2009 at 4:22pm |
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Glenine
have had two chest CT's but no PET. they say i dont need a PET because Im a stage 1. Is this true? My Pulmonologist will order anything i want though so i could ask him. He has been followng me for the pulm nodule for 8 months. It is only 4mm in size so he said doubtful it would be caught on PET. He even offered me to have it removed last year by a cardio thoracic surgeon but i backed out thinking i was being overly aggressive about a apparent "benign pulm nodule" which i guess are quite common. So thus we opted to watch it and no change in 8 months. I plan to see him again by July thats (4mo) since my last visit for another either CT or PET. If the ONC wont order what i want HE WILL.
THANK YOU SO MUCH
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: May 29 2009 at 4:24pm |
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Glenine
How did you know the cytoxan wasnt working for you? I will be getting dose dense AC X4 followed by Taxol for 12 weeks every week and a clinical trial of Avastin.
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: May 29 2009 at 4:26pm |
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Pam
I appreciate the reliable sources that you have posted for me. Im reading everything i can get my hands on. thank you so very much! You are always on here helping out us new ladies. God Bless
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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glenine
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Joined: Aug 29 2007 Location: United States Status: Offline Points: 21 |
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Posted: May 30 2009 at 3:49pm |
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Hi Loricarol,
Cytoxin was never on the table for me .They felt it usually has minal benefit in my type of TN cancer
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glenine
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Joined: Aug 29 2007 Location: United States Status: Offline Points: 21 |
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Posted: May 30 2009 at 3:50pm |
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Hi Lori......
Sounds like a PLAN!!!.........Keep us posted.
glenine
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: May 30 2009 at 3:59pm |
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Glenine
Is your type of TN BC different than mine? I would like to ask my ONc why they are using Cytoxan on me. Is that because of stage?
I appreciate all your help and answers it really helps alleviate more anxiety.
Thanks Glenine!
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: May 30 2009 at 6:40pm |
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Dear Loricarol,
Below you will find a few options - Dr. Rosen literally wrote the book on breast cancer pathology and two doctors who have a specialist interest in metaplastic.
I found other women on the breastcancer.org site who have metaplastic breast cancer.
Dr. Rosen is available to consult with patients, oncologists, and pathologists concerning the diagnosis and management of breast disease.
To contact Dr. Rosen directly (212) 746-6482 Here are two doctors also you may contact. First Dr. Christopher Pezzi, Abington Memorial Hospital, Pennsylvania, Surgical Oncology. Here is a link to a study he was principle author of recently on metaplastic BC
http://www.annalssurgicaloncology.org/cgi/content/abstract/14/1/166 There is also at MD Anderson in Texas, Dr. Bryan Hennesey...who by his web page as you will see has an avid interest in metapastic BC...Might be worth a consult... I haven't dated them but I went through many blurbs and found these 3 little blurbettes. I hope you will find them helpful.
Cytoxan (cyclophosphamide) is the drug that others have taken for metaplastic and Taxotere (docetaxel) - this is how you will find them spelled.
Connie
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: Jun 05 2009 at 5:18am |
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Connie
I want to thank you for the information and contacts you sent me. I have spoken with Dr Rosen's office staff and am in the process of having my pathology sent to him for a overread (another expert opinion).
THANKS AGAIN
God Bless You!
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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KatieMarie
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Joined: Jun 05 2009 Location: Missouri Status: Offline Points: 80 |
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Posted: Jun 05 2009 at 10:55am |
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To Loricarol and Chrissie D,
This is off topic, but I am new to this and I see you both look like you may have similar diagnosis as mine in April.
Would you mind commenting on the choice of mastectomy over lumpectomy? I think it was ChrissieD, why did you have chemo before mastectomy?
They found two more lumps near my original 1.4cm IDC while at my 2nd opinion appt. I'm starting to get more uptight, I still don't know my lymph status, and now with more possible cancer tumors found, I'm starting to want a PET.
So I guess I am looking for two answers: the mastectomy decision and who out there demanded a PET and when.
If you need to divert me elsewhere for being off-topic, SORRY.
Thanks!!
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jun 05 2009 at 11:27am |
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Dear KatieMarie,
I hesitated replying to your post as I want Lori and Chrissie to see it and reply, but I just wanted to welcome you to the site, and give you a link for the neoadjuvant chemo. Many are having the neoadjuvant chemo, as then they can determine if the chemo is actually shrinking your tumor(s). If it is not, then they can switch chemo regimens.
You can ask your doctor to order a PET scan.
I will now send you a private message so that I can give you directions for all the resources here on the site.
Many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: Jun 05 2009 at 1:43pm |
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Katie
GET A MASTECTOMY if you have multiple tumors (as i did) i had an immediate mastecomy to remove the breast and with it the cancer. Sometimes if the cancers are larger the ONC's will do chemo first for a few weeks to shrink the tumors. Mine were 1cm and 2cm and the first thing that they did was a mastectomy. This will tell you your node status too. The opinion of my surgeon was that multifocal tumors meant lumpectomy was not an option any longer. Hope that this information helps.
Pets are used for staging metastatic disease ( i think). I wasnt offered a PET as of yet either. Because Im a stage 1. But you need your surgery to probably determine your stage.
God Bless Katie
Lori
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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KatieMarie
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Joined: Jun 05 2009 Location: Missouri Status: Offline Points: 80 |
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Posted: Jun 05 2009 at 2:27pm |
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Thanks Lori!
My surgeon says that these two new lumps are like peas in pod next to the original lump, so he thinks it's still okay for the lumpectomy. Interesting that your lumps weren't that much bigger than mine though. Were they far enough apart that it would leave your breast too damaged, or was it the fact that you had multifocal put it directly to mastectomy?
I think I have a good surgeon, and apparently my case went before a tumor board to verify a lumpectomy was still okay....
I guess I can't get my head around how to determine if we are dealing with mets without a PET. Waiting for symptoms will make it too late. I'm getting worked up about that one month of surgery recuperation before chemo. If there is anything else brewing, it will have a whole month to party in there until chemo.
Thanks so much for your reply, Katie.
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Loricarol
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Joined: May 24 2009 Location: Utah Status: Offline Points: 85 |
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Posted: Jun 05 2009 at 3:00pm |
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Katie
I had the smae worries as you about METS. I spoke with everal ONC's including one at Duke university who was a personal friend of one of the ladies on this site (Glenine). The standard of care (they say) is to only order PET if a patient has stage 2 or 3 and nodal involvement. Dont quote me because this is just my understanding. Even after chemo they just watch you and do blood work and physical exams. They say that studies show that doing PET etc to detect METS earlier made no difference in overall survival. Although Im with you and i dont like their approach. waiting for symptoms sees ridiculous to me too.
My tumors were 2cm apart. The surgeon did a breast MRI and after that he made the determination to do mastectomy. Ask your surgeon about breast MRI.
I have had to wait 6 weeks post op to get my chemo surgery was 5/5 chemo is starting 6/17.
More later hope this helps!
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DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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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 06 2009 at 1:17pm |
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Hello KatieMarie and welcome.
I can see you are in the middle of many thoughts of confusion over what or what not to do. For some odd reason this is the way this seems to work.
You are diagnosed and then faced with so many things to think about it is a whirl.
I would suggest you slow down a bit, take a few deep breaths and over the week-end do some research. Look around our forum, ask questions, google, get a bit of a grip on what is going on and try to focus on now and not worry about later down the road.
We are all different and no one knows what is ahead for us.
Also remember as you take a deep breath that we all have different situations, different bodies, pathology. This will all calm down and become more settled as a bit more time has passed and you understand a bit more what will be happening.
I would also suggest getting a mild sedative and many of us have used anti-depressants during this dificult time.
Do you have a good support system around you? Friends? Family?
Another thing you must think about is do you have a history of cancer in your family? You may want to do some research in this area on
http://www.facingourrisk.org which is a very informative website/forum full of information on familial cancer.
When do you go back to the doctor and whom will you be seeing?
Near the top right side of the page look for the word Resources, click on that then there will be a drop down, then click on Taking Charge of your care, this you will very helpful in getting you started.
Feel free to ask us any questions and we will do our best to help.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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glenine
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Joined: Aug 29 2007 Location: United States Status: Offline Points: 21 |
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Posted: Jun 12 2009 at 4:19pm |
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Hi There,
Cytoxin they thought would not be as effective on the sarcoma=like cells
So they went with just highdose Adriamycin..Keep me posted
glenine
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glenine
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Joined: Aug 29 2007 Location: United States Status: Offline Points: 21 |
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Posted: Jun 12 2009 at 4:30pm |
I never recieved Cytoxin.just high dose Adriamycin followed by Taxatere
hugs,g
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glenine
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Posted: Jun 12 2009 at 4:44pm |
Wonderful..Please let us know what Dr.Rosen said.
hugs,g
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