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TNBC_in_NS View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 8:34am

An update of my progress.

The Geneticist called me on Monday to say that the lab in ON moved from point A to point B and when they did the machines that they use broke down... This is the reason she was given for the six month delay in my BRCA testing.  They should be available next week.  I will then know what is going on and will be able to make a more informed decision for followup. 
 
I had a bone scan on Tuesday and I must say it was grueling!  My hands and feet fell asleep from laying so still and it took more time to get the blood flowing again than I ever felt... My ankles were held together with a strap, a V-shaped cushion under my knees and my arms stuck to my sides with boards shaped in a curve.  It took 35 minutes of being still in the position they put you in.  I felt like I was crooked but they said I was straight??? It will be a few days probably next week before I get the results of it! I asked what else besides bones would be shown and the major organs will show, not sure about the breast lump?  I am optimistic about this test although the ribs are still paining especially when bending over, so not sure what is happening there either?
 
Pam:  I am waiting on the BRCA before I see Dr. Dent.  Thanks for asking!
Hugs to all,
Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 8:41am
Hi Helen  my fellow Canadian- I am crossing my fingers for a good result for you!!

It is so difficult to be still in that position!

I got my BRCA results on Tues night - Negative - yeah!! Hope you get the same. I am waiting on my p53 results

love from Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 9:35am
Oh Tracy thanks for sharing your AWESOME NEWS with me!
I never thought NEGATIVE WOULD SOUND SO GOOD! Star
 
Bless you as you wait on the p53.....
I hope I will dancing with you next week!
Hugs,
Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 10:05am
Donna, rule of non scientific thumb that so far hasn't failed. . .
     Our pets know us better than we think. If you find your new puppy is licking you all the time, they will do that if you have signs of cancer. Normal licking, excited to see you puppy licking is no bother, but if a dog or cat curls up next to you and obsessively licks that is different.
     So try it out!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 10:18am
Donna, I am sorry for your news, but will pray it is benign.. Blessings to you.. Susie
dx 10/08,age 56,.75 cm. Stage1 Grade3,lumpectomy,SN neg..,AC 12/08-02/09,35rads,03/09-05/09,BRCA2+(E1415X),06/09,oophorectomy 10/09,
Zometa - IV/mo.,07/09-08/10, lumpectomy #2 10/20/10 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 10:25am
Donna, despite what seems like scary news, I think you are likely still inhabiting false positive land.  Really.  They are going to torture you to biopsy that damn thing and it is probably going to be NOTHING.   Try not to panic because right now you just DON'T KNOW.  If there is really a problem, there will be time to be scared.  Try not to be like me and do your suffering up front, in advance.  It is a waste.  If, as I am guessing, this turns out to be nothing I want you to promise me to never again have a PET scan unless you have symptoms you want to check out.

Where was your tumor located, by the way - outer or inner part of the breast?   If outer, that makes it even less likely that it would spread to an IM rather than to a node under your arm.

One final note:  if by chance it is a positive node (which I doubt), this still counts as a local/regional recurrence. 

We love you, and are here for you!!!

love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 10:29am
One final note:  you have had multiple reconstructive surgeries.  This is a huge stress on your lymphatic system.  That node is probably swollen because it is handling some surgery-related trauma or infection.  Infection and wound healing lights up too, not just cancer.  Anything metabolically active. 
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 11:15am
Helen, let us know when you hear your results

I am also going on the North American wide 5 year Metformin study with over 30,000 women- will drive me crazy not knowing if I get the real deal or the placebo!  I was on a small pre-surgery Metformin study where I knew I got the actual drug.

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 11:44am
Tracy,

What's this p53 test for?  Is this a normal test or something you have to request?

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 11:46am
Mainy,

The lab pup isn't licking excessively, but she jumps up on her hind legs and likes to put her paws on my chest.  At first I thought it might be bruising from her.  I'm trying to prevent her from jumping on me when she's excited.  However, she does this to everybody she greats, just not me so I guess that's a good sign!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 11:59am
Denise,

I'm trying desperately not to worry up front.  I've got some ativan to help with that.  What you said makes so much sense my friend.  I had my breast reconstruction surgery just a year ago this month.

My tumor was in the outer side, upper quadrant of my right breast, about 11:00 position.  The IM node is around the 4:00 position on the inside of my chest, right under the lower edge of my implant.  The node does not hurt and it is not palpable.  She said I'm asymptomatic.

My onc called me first thing this morning.  She talked to the radiologist that specializes in this type of biopsy.  I'm having it done on Mon, Nov 15th.  It was the earliest appt I could get and she said he was the only doc she wanted doing this procedure.  It will be a needle biopsy guided by a CT.  She said he feels he can definitely get to the node area.  I'll know the results in a couple of days after that.  I asked her if it could still be something else besides C and she said definitely.  We're just doing the biopsy to know exactly.  She said she has a plan either way.  If it is a recurrence, then it is still considered a regional recurrence.  It's small enough and we're acting on it now.  I also asked her if it showed up on my MRI and CT scans I had right before my bi-mx, and she said those were clean.

I'm feeling much better today, calmer.  Knowing we have a game plan somehow calms me.

Donna

                                    

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 12:04pm
Oh Donna! I am praying for a false positive and as others have recommended just focus on doing the biopsy and knowing for sure and then if there is anything to worry about do so.

Did you tell your doctor about the other supplements you are taking? I know you follow Edge's CAM and that is why I'm asking. When I had my sinus surgery back in June they took me off the aspirin, the Selenium and all the antinflamatories (sp.?)(Curcumin, Boswellia, Reservatrol and DHA) as all these can interfere with the healing process during surgery (that is what my doctor said). They made me stop them like a week before surgery and allowed me to resume them a week after.

Plese keep us updated.

Hugs,

Natalia

Edited by nmunoz - Nov 04 2010 at 12:04pm
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 12:08pm
Hi Donna - the p53  seems to be more broad based in terms of protecting humans from negative type cell action and a variety of cancers. It difficult to explain but I have attached a link to an article that does a pretty good job explaining it how it relates to BC and some of the latest research on it. I think I saw this link posted by someone else on this site too. I actually had this test done in my 20's after bone cancer and it came out -ve for the mutation but my onc. wants it done again as time has past and the technology has changed for this test.   I didn't have rads but my onc. said if I was positive for the p53 test and needed rads. that would have created an "unstable environment" - I assume meaning high risk of more cancer from the rads.  The outcome of my p53 may influence weather or not I have more surgery such as ovaries out. Hope this info does not worry you but you might want to ask about it esp.  if you are considering rads. or would just like to know your p53 status.

Tracy in Toronto


http://www.sciencedaily.com/releases/2009/04/090419170022.htm


TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 12:12pm
P.S. Donna -sorry, I didn't actually answer your question! My onc. brought it up given my history with a prior (different) cancer. In Canada the test is paid for by the health system if your onc. requests it. I don't believe it is routine for all here. Still considered a fairly new area of genetic testing. The guru in Canada for this is based at Sick Children's Hospital in Toronto - the same fellow is there now who did my test in my 20's!

Tracy
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 1:41pm
Donna,
I'm sorry you have to wait so long.  Having to wait 24 hrs would be too long!  We are going to pray whatever this is out of your body! Labs love to jump up and love on their people!
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 5:27pm

There has been conversation and articles, studies posted here in the past regarding p53 and tnbc.

 
Here are a couple of links,
 
 
 
 
Try staying busy if you can Donna over the week-end, we know the wait is so hard.  Sending hugs,


Edited by trip2 - Nov 04 2010 at 5:33pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 7:42pm
Sending hugs and love, Donna.  This is the worst part - the dang waiting for the biopsy.  We are here for you - each day and night until it's done.  Hang in there and love on that pup!
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 7:49pm
Thanks Pam for the additional articles

Donna, stay strong. As you say you now have a game plan! You are making your own luck be being proactive

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 7:56pm
Natalia,

Thanks for the heads up on the supplements.  I've stopped everything except the Vitamin D3 and Calcium.   I've got some ativan for the anxiety which seems to be helping.

Thanks everyone for all your caring and loving support. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2010 at 8:16pm
Donna, I'd be needing a big bottle of Ativan!  I hope you have plenty!
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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