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vickyann
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Joined: Sep 25 2008
Location: Texas USA
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Points: 127
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Posted: Jul 20 2009 at 3:39am |
Susan,
I have not scheduled my breast reconstruction. That is my next step, I am thinking about going to see the doctor the end of august. Will you let me/us know how that goes. Do you have an expander?
Did you have both breast removed at the same time?
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Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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sberger
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Joined: Apr 30 2008
Location: United States
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Points: 26
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Posted: Jul 20 2009 at 7:01am |
There was a big study that breascancer.org used for survial rates for TNBC and it was 77%. That was using all stages and grades, everyone. This study was a little old. They may not have a targeted drug yet but the care has changed a lot for tnbc. I doubt there are many onc's that are not treating this very aggressively, and therefore the survival rates if they were done today would be even higher.
Susan
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DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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Posted: Jul 20 2009 at 7:08am |
Dear Susan (sydonashae)-
what a lovely, important message...
and second Susan (sberger) thanks for study info..do you have specific details?
best wishes to all,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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sberger
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Joined: Apr 30 2008
Location: United States
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Points: 26
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Posted: Jul 20 2009 at 7:22am |
http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior.jsp
I think that fact that they grouped in all stages also up the survial rates for early breast cancer.
Dr. Susan Love also writes very optimistically about tnbc. Also check "Our Blog" to the right of this artical for very good updates.
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DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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sberger
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Joined: Apr 30 2008
Location: United States
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Points: 26
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Posted: Jul 20 2009 at 7:25am |
Sorry the blog is to the left of the TNBC description.
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DX 10/06
Stage 2-3,Grade 3,3.5cm
2 nodes +, lymphvascular invasion, 2 Avastin + Cisplatin, Mastectomy, clear lymphvascular, AC+Avastin * 4,Taxol + Avastin just once because of toxicity, Rads 5 wks.
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Tabatha00
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Joined: Jun 03 2009
Location: Alabama
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Points: 115
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Posted: Jul 20 2009 at 8:43am |
You have every right to feel exactly how you are feeling but my prayer for you is that you make peace with what is going on even though it's the crappiest thing!!!!!
I was diagnosed with breast cancer on May 22 (1 month shy of my 38th birthday). I had an excisional biopsy where they removed the whole tumor cause I wanted that bugger OUT. I decided I wanted to go to a large breast health clinic for treatment and so I underwent ct scans, bone scans, mammo's, ultrasounds and all my scans came back clear EXCEPT there was this "thing" on the lower pole of my kidney the Dr's wanted checked out first. I met with the Urologist, he told me it was probably cancer (WHAT????) and so I had a kidney biopsy so they could determine if it was related to the breast cancer. The results........grade 1 renal cell carcinoma (kidney cancer) but the SILVER LINING.......it is NOT related to the breast cancer.
Does it suck to have 2 types of cancer at 1 time? Ohhhhhhhh well you bet it does. I didn't sign up for this!!!!! So, on July 30 I will be having surgery to remove the tumor laproscopically or if it's attached to my ureter they will remove my whole kidney. (CRAPVILLE). Of course my prayer is they remove it laproscopically (he won't know until he gets in there) because then I'll be able to FINALLY after 2 months be able to start chemo 2 weeks from surgery.
If they have to remove my entire kidney I'm sure the gameplan will change (AGAIN) but I have to realize that I am EXACTLY where I am supposed to be RIGHT THIS VERY MINUTE because this is where God wants me. I sure do wish I know what his plan was for me but it's not for me to know. I have to walk in faith that things will work out for me in the end. I just have to lean on the Lord, my family, my friends to get me through. God has put messengers in my path EVERY step of the way and that's how I KNOW things will be o.k.
All we can do is do what our Dr's tell us to do and pray. I don't want kidney cancer and breast cancer..........most especially not at the SAME time. I have 2 kids at home, I have a wonderful husband......I have a GREAT life and I REFUSE, REFUSE I tell you to let cancer stand in the way of that.
I'm sure my attitude might change a little once I start chemo cause I'm sure that won't be pleasant but I CAN DO IT........I WILL DO IT. I will do it because that is God's plan for me and that's what I have to do in order to see my kids grow up. Bring it baby!!!!!
I'll keep you in my prayers. Have yourself a pity party every now again because we all do. It's the fear of the unknown. The "what ifs"..........FOCUS on the important things because we can't predict what the future will be like.........we aren't promised tomorrow.........we are here TODAY.........take it one day at a time. Baby steps as my husband has had to remind me SEVERAL times.
You can do this. We ALL can do this!!!!
Tabatha
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Pam M
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Joined: Jul 20 2009
Location: South Carolina
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Points: 7
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Posted: Jul 20 2009 at 10:58am |
There is a great article that really gave me a lot of hope at breastcancer.org. It's an article dated July 2008: Triple Negative Breast Cancer. I love the part about "living to a ripe old age."
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Tabatha00
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Joined: Jun 03 2009
Location: Alabama
Status: Offline
Points: 115
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Posted: Jul 20 2009 at 11:22am |
Do you have the link to the article?
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dconnolly
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Joined: Jul 20 2009
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Posted: Jul 20 2009 at 3:34pm |
Ok
Just when I am having my pity party, which lets face it we all have and need at times,because we are scared and tired and don't quiet know what life has in store for us. I read these posts and think oh my lord, I think I am dealing with a mess. Well it just goes to show we can all do it. I am thinking and praying for for you. You will beat this.
Dx 5/09 IDC STAGE 2/GRADE 3
lumpectomy 6/09 margins clear 2 of 5 nodes +
3/4 rounds ac done with 4 round taxol and radiation to go
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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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Posted: Jul 20 2009 at 4:59pm |
Dear Tabatha and all,
this may be the article?
http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/
from the above link-
"George Sledge, M.D.: A good place to start is what's a common misconception in that triple-negative breast cancer has a truly awful prognosis. But in fact, that's not really the truth. Factors such as size of tumor and lymph node status are still very important. For a Stage I breast cancer patient, even with a triple-negative breast cancer, most patients live to a ripe old age. In addition, if the patient received adjuvant chemotherapy, there are significant reductions in the risk of recurrence and death due to breast cancer. So I would not consider this a matter of gloom and doom."
Pam M....does the above look familiar?
all the best,
Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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shoyle
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Joined: Jul 18 2009
Location: South Carolina
Status: Offline
Points: 3
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Posted: Jul 20 2009 at 5:16pm |
While I was in chemo treatment, I made sherbert and gingerale floats, they were very soothing, it did not matter if I used organge, raspberry or rainbow sherbert they tasted delicious, I also made smoothies, with fruit juices and frozen yogart.
Sharon
Stage 2
Non-lymphnodes
chemo, lumpectomy, radiation
2005 dx
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sydonashae
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Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 5:37pm |
Green Smoothie Recipe!!
1 scoop green powder (you can buy at healthfood stores)
1 scoop whey protein (vanilla)
1/4 cup ground flaxseeds (brand - spectrum)
1 tsp probiotic powder
1 cup blueberries (frozen)
I use either a little organic fat free milk or cold water to make it smoother and I sometimes play around with ingredients to make it taste better. The first four ingredients are a must though. I have even replaced the whey protein with an EAS AdvantEGE low carb vanilla shake - yum. You can always add a banana or strawberries. A regular household blender works great - no need to go buy a juicer or anything!! Let me know how you like it! Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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sydonashae
Newbie
Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 5:41pm |
OH and I almost forgot! Very important to drink at least 40 oz of green tea day - the real thing, not decaf. A lot of the antioxidants are lost during the decaffination process. Buy quality green tea from a health food store not lipton - it isn't potent enough. xoxo Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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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: Jul 20 2009 at 5:41pm |
Susan,
I will copy and paste your post in to the chemo tips, as this sounds like a winner and something that will be easy to make.
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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sydonashae
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Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 5:43pm |
One more thing!! This shake is to be used everyday as your breakfast - not just during chemo but after and for as long as you can stand to do it! I also use a product called JUS (the most concentrated antioxidant on the market right now) I take 4 oz of this everyday and often mix it in with my shake! Ok that's all now! Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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sydonashae
Newbie
Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 5:45pm |
That would be great! Thank you! Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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sydonashae
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Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 5:49pm |
Also please note on the post Nancy that they should always notify their doctor for anything new they are taking. I think this shake is harmless - I was prescribed this shake by a naturepath AFTER chemo was over. Some of the ingredients may interfere with chemo - but not sure. I think the goal after chemo is to enrich your body with healthy things and this is one healthy shake! Thanks so much! Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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kirby
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Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
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Posted: Jul 20 2009 at 5:51pm |
I keep chopped up fruit, especially that, that is too soft/ripe for eating in the freezer to add to my smoothies.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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sydonashae
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Joined: Jan 14 2009
Location: Boise, Idaho
Status: Offline
Points: 37
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Posted: Jul 20 2009 at 6:12pm |
Not sure if you are directing this at me, Susan (sydonashae) or the other Susan. My reconstruction is scheduled for September 8th (a little later than I wanted) and I will have the expanders "installed" at that time. I will for sure keep you all posted on how that is going!! xoxo Susan
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Susan (age 33 at dx)
Dx: 6/13/08
Triple Neg
Stage II, Grade III
2/3 SNODE 0/13 NODES/BRCA NEG
4 rounds AC/12 Rounds Taxol/
30 Rads
Reconstruction process
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newalex
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Joined: Jun 29 2009
Status: Offline
Points: 41
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Posted: Jul 21 2009 at 2:34am |
Hi, all
I am a newbie and like to hear success stories. My stats is that I had 1 cm tumor (TN) and 1 microspic node. Is 1mm microspic node considered as node positive or does it have same prognosis as node negative?
Anyone had similar stats and long term survivor?
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