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Had PCR...but its back.

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amylynn View Drop Down
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    Posted: Jul 02 2012 at 6:36pm

Hi all,

  So I had a lymph node biopsy of an enlarged lymph node in the groin. Got the results back and it is cancer. At this point still waiting on a more detailed pathology report to determine what type of cancer it is. I guess there is a chance that it is not breast cancer, but a new cancer. Anyway, will have PET/CT on Thurs and then meet with surgeon for new port next Monday. I will go back to see Oncologist on Mon afternoon for results and treatment plan, though chemo will be involved. 
  Its been a little over 2 years since I finished treatment. I was on a clinical trial and had neo-adjuvant chemo and then had surgery and did get a complete response (had 31 nodes removed). After surgery, I had to do 10 Avastin treatments to finish up the clinical trial and after the strong recommendation of my breast surgeon, I did 28 radiation treatments.  I am a little shocked it is back, but I guess it is and I have to deal with it.
 
 Anyway,  Im a little nervous for what the PET/CT will show. 
 
Amy
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2012 at 7:55pm
Oh Amy, I am so sorry.  PCR makes that so unlikely, but I guess not impossible.  Maybe it'll turn out to be a new primary of some sort, maybe lymphoma. 

Anyways, I'm here for you, ready to help out any way I can.  

Much love,
Denise
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2012 at 9:14pm
Amy,

I'm so sorry.  You did everything possible to treat it aggressively.  It may possibly be a different type of cancer and not a recurrence.  Hoping the scans give you good results.  You sound strong and ready to battle this again.  We are here for you and will be with you every step of the way.

Hugs,
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 BethP Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2012 at 3:53pm
Amy,

I posted on the other thread and then 123Donna alerted me to this one. I'm sorry about the results, but I too am hopeful about the results of a scan. A friend of mine who has lived with lymphoma for many years was diagnosed with a second lymphoma in his groin, which was taken care of by surgery. He's about 3 years out now.

Beth
Dx November 21, 2011: IDC, not staged; Gr. 2 nodes, largest 2.6 cm; Gr. 3 breast 1.2 cm; neo-adjuvant TAC; lump. + 16 nodes PCR
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2012 at 5:25pm
Amy,
 
I am so very, very sorry you have gotten this news.  This disease is disgustingly unfair and cruel.  I am sending prayers that this fight will be a gentle one on you and that this is kicked to the curb forever. 
 
Hugs,
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 nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2012 at 10:38pm
Oh Amy! I'm sorry about these news. I hope you get some answers soon and also a plan to fight this. I will keep you in my prayers.

Hugs,

Natalia
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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 03 2012 at 11:41pm
Amy,

Sending lots of love and caring thoughts to you as you are awaiting the final path report and
the upcoming Thursday PET/CT.

At this point, you are still dealing with incomplete info.
Anything that has an unknown element with it is so, so hard to deal with.
Once you get all the information and have a definite plan of care with your physician,
will join you in the hopes for good results.

Grateful for today.........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 04 2012 at 8:47pm
  Thanks everyone.  The one thing I do know is that is not lymphoma.  The base pathology is Poorly differentiated carcinoma of unknown origin, which I think means grade 3 (which is what my breast cancer was).  The one thing I was thinking about is that I have mild lymphedema and I have had therapy to treat it since about July 2010.  Part of the treatment is manual lymph drainage and the fluid is manually moved to the inguinal nodes.  I am wondering if it also moved cancer cells? 
 The good thing is I have no symptoms besides the lump in my groin and so I am thankful for that.  All blood work is normal.  Chemo for me last time was very tolerable and so I hope for the same this round.   
 Hopefully, between the PET/CT and more pathology, there will be more conclusive information on what I am dealing with.  
 
Amy
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 04 2012 at 9:23pm
Amy,

I am at such a loss as to what to say. I read this with disbelief the other day and had to come back to it because I just didn't have the words. Two days later, I still dont have the words to express my sadness, disbelief, and shock, but wanted to tell you that I am thinking about you. Your path report is exactly what my original path report read also. Hopefully, you will get more information soon and get a plan in place to kick some cancer butt again. Hang in there...

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2012 at 10:28pm
Thanks Deb,
   I am really shocked about it myself and almost had an anxiety attack while I was having the PET scan today.  It will be a long weekend waiting for the results on Monday, but then again I really am in no hurry to start chemo again.  Though it always feels better when there is a treatment plan.  Going to try to stay busy with friends and family over the weekend.
 
Amy


Edited by amylynn - Jul 05 2012 at 10:37pm
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2012 at 10:48pm

Amy,

Sounds like you have a good plan to try to stay busy with friends and family over the weekend.
You certainly have a lot of inner strength which shines thru your words.
As you said things feel better when there is an actual treatment plan.

Sending you lots of love and caring thoughts.

Grateful for today...........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2012 at 11:15pm
Dear Amy,

I, of course, do not know where you are going for treatment but if it is not Johns Hopkins I would like to suggest you consider a second opinion there. Hopkins has a  'second opinion' clinic and there is a wonderful Breast Medical Oncologist there. Her name is Dr. Tanya Prowell.

http://www.hopkinsmedicine.org/doctors/results/directory/profile/0012228/tanya-prowell?vip_doc=false&lastName=Prowell&nameSearch=Go&hch_doc=no&gs_doc=yes&jh_doc=yes&CLEARPAGECACHE=false&cp_doc=yes

Dr. Prowell, unusually, practices at Hopkins, has a particular interest in TNBC and also works at the FDA.

I will send you my contact info if you would like to talk.

warmly,

Steve






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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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2012 at 2:27pm
Amy,
I am so sorry to hear this news I am at loss what to say, I will be praying for you that they come up with a plan to kick this awful cancer to the curb. I am here for you.
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote miffyjones Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2012 at 8:22pm
Hi Amy - thinking about you this weekend. You know with the support of the amazing women on this site and the great doctors you have in the USA, there is real hope and belief coming from my camp that you can beat this thing again. I just got my scan results yesterday via the post and I'm stable"ish" at the moment, but have to wait until Monday to talk to my oncologist to see what's next. The anxiety stinks. I could hardly open the letter - but when I get back onto this website and talk to all the amazing women here, my hope is lifted again, and I settle myself to go on another day ... one at a time. Sending you love and peace. M 
11/10 TN Multi Focal Tumor RBreast DCIS left. 2/7 Nodes. BRCA2+ 3 x FEC 9 x Taxol 5wks rads. Nov '11 Multiple Mets lungs, liver, sternum, mamary nodes. Cis/Avastin/Gem 3 wk cycle. Jun12 stable disease
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2012 at 1:31am
Amy,

Sending caring and supporting thoughts as you await your PET scan results on Monday 7/9.

Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2012 at 7:56am
Amy,

Thinking of you today.

Hugs,
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 majjers Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2012 at 2:55pm
Hi Amy,
Hoping everything goes well for you and whether you have to fight again or not, please know we are all here for you.
 
Hug  for you today,
 
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2012 at 9:42pm
  Thanks so much for the support everyone, I really appreciate it.
 
  I got the PET scan results and what I do know is that its in some odd spots.  There is a large spot in the soft tissue of my back.  There is a spot on my spine.  It is in my adrenal glands.  It is in a lymph node near my liver and in 2 inguinal lymph nodes (one left and one right). 
 
 There is still not a definite conformation that it is breast cancer, but my oncologist's office was able to track down my biopsy 3 years ago so that the pathologist can compare the 2.  They tested for hormone receptors,which are still all negative.  So, everything points to it being a spread of the breast cancer, but may never know.
 
 At this point, the plan is to get me on a PARP trial at NIH (National Institute of Health).  My current oncologist office is smaller and doesnt have access to the PARP drugs, though they work closely with NIH.  I may also try to get to Johns Hopkins for a second opinion (Steve, hope to talk to you soon), though with being BRCA positive, trying a PARP maybe the way to go. 
 
 I also went to the see the surgeon to schedule my port placement, which is scheduled in 2 weeks, but the oncologist wants to see if it can be moved up and done as quickly as possible.  They are going to call and see if they can move it up. 
 
 Honestly,  I am still kind of shocked.  Its really amazing and scary how quickly this grows.  I hope to get on treatment quickly and maybe will be lucky to have a similar response as I did with my original treatment.
 
 Amy
 
 
 
 
 
 
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2012 at 9:50pm

Amylynn,

Attached is a link of clinical trials in Maryland.  If you want to refine the search and change the state you can to see what trial are available in other locations.

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 amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2012 at 10:29pm
Hi all,
  Im still in waiting mode and its really frustrating.  I am waiting to see if NCI at NIH in Bethesda, MD will accept me and get me on a PARP trial.  Im sure for them a week is nothing, but to me it seems like an eternity.  My port surgery will be Mon, July 23rd and then I really just want to get started on something soon.  I feel like my life is on hold.  Im trying to do the day by day thing, but its not working for me at the moment.
  Anyway, just whinning because it makes me feel better and I know you understand.
 
Amy
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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