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    Posted: Mar 21 2014 at 1:35pm
Hi! I was diagnosed and began chemo Dec 30 for TN. I have no primary site, despite mammograms, ultrasound and MRIs. my chemo ends in three weeks, and I need to make a decision about surgery, as in full mastectomy or lumpectomy. Surgeon says take all, oncologist says take the tail of the breast, since the primary site is probably hiding there. Has anyone here have the experience of not having a primary site, or some wisdom or thoughts to share?
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   Hi,   I was wondering from what pathology did they base your TN diagnosis. This would shed more light on your situation. Have you had more than one opinion on the matter from another oncologist?   I have heard of a primary site not found in certain cases of cancer although it is usually more rare. Further testing down the road often determines where it originates.
          Please let us know if you can add any more facts. Take care...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 6:53pm
I'm confused.  How could they diagnose if there was no primary?  What did they biopsy?  This is the first time I've heard of a diagnosis without a primary site or tumor.

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 (1) Thanks(1)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 9:12pm
i am sure i've seen in someone's signature here, that they found their TN in the axillary nodes and never found a primary site.  it's the only time i've heard of such a thing.   my surgeon once told me it's not possible for breast cancer to start in the axillary nodes.   i never say never, and don't necessarily believe the "we know everything" views.   i think there's a LOT about the human body that is not known.

and what would i do?  that's a tough one and i can't answer that just now.  i THINK i'd have the double, but i'm not sure.   is the risk of recurrence greater in the breasts than say, the lungs, at this point?   unfortunately, we can't remove all the targets...     i might get another opinion too, from someone that has a lot of experience with TN.   it's not something to fool around with.   i send you many good wishes as you deal with this choice.   it's not easy being an exception, i know.    
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NoPrimarySite Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 10:05pm
Hi guys! 

You have no idea how thrilled I am to hear from anyone on this!!!

I'm receiving tx st St. Michael's Hospital, Toronto, Ontario, Canada. I found a golfball-sized lumo under my right arm Oct 21, raced to my doctor, and the tests started right away: 
  • bloodwork 6+ times
  • chest x-ray (Oct. 21)
  • breast ultrasound (Oct. 21)
  • mammogram (Oct. 21)
  • fine-needle biopsy (Oct. 31)
  • core-needle biopsy (Nov. 14)
  • US-guided core-needle biopsy (Nov. 28)
  • CT pelvis, abdomen, chest
  • full-body bone scan (Dec. 6)
  • EKG (Dec. 10)
  • MUGA scan (Dec. 10)
  • MRI bilateral breast (Dec. 11)
  • excisional biopsy (Dec. 18)
  • upper GI endoscopy (Dec. 24)
  • colonoscopy (Dec. 24)
  • head and neck CT (Dec. 27)
So, the diagnosis was adenocarcinoma from the guided ultrasound core-needle biopsy, then all the other tests were to find out where it was coming from. In the end, I was clean everywhere, I had five large right axilla lymph nodes, and from the sentinel node excision, the cells had no markers.

My case was presented at Tumour Board three times, consulted on with other cancer hospitals, and my diagnosis was made. They have seen two other women like me, right lymph nodes, but no primary site found, and they got the same tx I'm getting: four rounds of doxorubicin-cyclophosphamide, then four rounds of paclitaxel. I still have two of those to go. 

I'm facing the lymph node removal and what surgery I'll have on the breast/s. That is what I was hoping for some help with here. Like I said in my first question, the surgeon thinks he should take both breasts. My oncologist (Dr. Christina Brezden-Masley) says she will consult her research list serve with my next MRI and case study, and see what they think too. Tu,our Board and my onc think the primary site is tucked up high in the tail of the right breast, close to and possibly obscured by the lymph nodes. 

To tell the truth, I feel like a very unfortunate freak—first, it's triple-negative, then they don't even know where it is. What do I do? How to hope to find a recurrence if they would never have found the first one, save for the lymph nodes?

Anyway, if anyone wants to meet on a more in-depth level, I'm writing a blog, so feel free to come by , read and say hi: http://itsbecauseisaidso.wordpress.com 

Anything anyone to share to help me with this decision, please share!

Thank you in advance, so much!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 10:41pm
Thanks for educating us!  This seems to be a rare diagnosis.  We can't give you medical advice but if it was me, I'd probably have a mastectomy and hope they find the primary hiding somewhere in the breast tissue.  It's a tough decision for sure.  I think a member Lotusblossum also had a dx of unknown origin.  

I found a couple of links discussing this rare type of cancer:






Edited by 123Donna - Mar 22 2014 at 12:34pm
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 NoPrimarySite Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2014 at 10:49pm
Thank you so much! I'm going to look now. And I feel, in the back of my mind, that the bilateral is probably the way to go...
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2014 at 9:23am



Hi,   Thank You for the information on the site of the pathology.

        Having lived in the GTA for over 27 years St. Mikes is an excellent hospital and you are in very very good hands as I am sure you know.

        The surgeon says, take both breasts and the onc. wants to review a little more, that is good...It is a difficult decision to make. The next MRI may help a great deal in your decision quite possibly. Your gut feel is often a good thing to go with when the time comes for decision making after the Oncs review.

        Do not feel like a freak...Cancer is a tricky business. I will keep you in my prayers for the right decision.

        Take care and let us know if possible what you decide...God Bless. Love, Annie

       
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2014 at 11:55am
If you have the ability to travel and insurance to cover it...MD Anderson Cancer Center has a special unit for Cancer of Uncertain Primary (CUP).

xhttp://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/cup/index.html

warmly,

Steve

p.s. I can walk you through how to register there and there is a physician that I would suggest you consider seeing. I am sending you my contact info if you would like to talk. I am a volunteer patient advocate so no medical advice and no cost. 


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 debtm Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2014 at 5:02pm
Hi!!
Just wanted to let you know you are not alone. I was diagnosed with breast cancer with an occult primary and started chemo in October. I have four more treatments and should finish them by the end of April!
After that, the next thing for me will also be surgery, and we are looking at our options.
Praying for wisdom in your own decision. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2014 at 10:07am
my cancer was mostly invisible and i recently specifically asked how they would find metastasized cancer when they couldn't see the original and i was told that metastasized tumors are different, even though they're still TN, and that they do show up.  
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CAfree12 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2014 at 4:37pm
First of all - so sorry that you are having to deal with all this without a clear target! 
As someone who has sat in breast tumor conference on a weekly basis for years, I believe I would go ahead and have the bilateral mastectomy.  I'm basing this on the fact that breast conserving surgery only works when there is a way to follow the remaining breast tissue for recurrence.  Since your breast cancer only presented itself in your lymph nodes, then confidence in monitoring your breast after a lumpectomy and XRT is zilch!!
 
However, bilateral mastectomy is a big surgery.  I was very fortunate that I breezed through with no significant healing issues or treatment delays. (and I am heavier then I should be!!)  I know too many people that didn't have such an easy time.  That being said, I am very happy with my smaller, perkier boobs and after two years I am really begining to feel sexy again! 
 
Good luck and do whatever gives you peace of mind!


Edited by CAfree12 - Mar 25 2014 at 10:51am
Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2014 at 6:29pm
Are they sure it's breast cancer, and not from some other tissue?
If breast cancer for sure, is it lobular or ductal?  If lobular, I'd have the breast removed, since it is sometimes not visible in scans.  If ductal, I wouldn't have either breast removed.  Odds are, if MRI was negative they won't find anything on pathology, right?     So, maybe leave the breasts alone and do rads? 
Good luck deciding! 
-d


Edited by dmwolf - Mar 24 2014 at 6:30pm
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 CAfree12 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2014 at 10:48am
I'm responding to dmwolf's question.  When there is cancer present in a lymph node the pathologist can tell by the physical appearance of the cancer cells and how it responds to various stains whether or not it is breast cancer.  I am not sure that the staining that is done to verify if the cancer is lobular or ductal woks as well in the lymph node.  (There is a a specific stain that if it is present, it is ductal.)   It's not really an unknown primary because they know it's breast, they just don't know the location in the breast.   That's what makes the decision about what to do so difficult because there isn't a target to do radiation on or to monitor on MRI or mammogram.
Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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