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First time user

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Category: TNBC Forums
Forum Name: TNBC Polls & Surveys
Forum Description: A place to ask questions and survey the community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=8112
Printed Date: Mar 26 2026 at 4:52pm
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Topic: First time user
Posted By: Craig76
Subject: First time user
Date Posted: Mar 06 2011 at 2:36pm
Hi All
 
First time user here.  My name is Craig.  I have a friend that was diagnosed with Triple Negative Breast Cancer.  They took out a tumor that was 4.5cm and removed one of her breasts.  She was stage 2.  At the time she had clear margins and went through chemo.  They do not think they got all of the cancer so they tried radiation which seemed to work really well.  Most all of the caner was wiped out thank goodness.  She does have "cancer spots" popping up on her lungs and on a bone on her spinal cord which she did not have before.  I have read on sites where this would be considered stage four now.  Most of what was in her cancer wise is gone but these "spots"concern all of us (family, friends, and so forth). 
 
I guess my first question is a cancer spot the same as a cancer cell?  I have not been able to find that information online. I think they are one in the same though.  I do not believe the "spots" have taken over her lungs.  I have read that when that happens you become short of breath and such but I am still a little nervous about her upcoming doctor visit.  I know I can not get a specific answer for this next question because every case is different.  But I guess my second question is what can we expect for her upcoming doctor visit this week?  They are going to go over her pet scans.  When cancer spots are found on the lungs and in her bones, is she still in the treatable area or is this going to be a rough doctor visit?  I am just really concerned for her right now and I sort of want to prepare myself for what could take place so that I can continue to be the rock that she needs right now.  Thanks for any info you guys can provide and God bless each of you for what you do on this site.



Replies:
Posted By: 123Donna
Date Posted: Mar 06 2011 at 2:47pm
Hi Craig,

Were the "spots" found by a PET scan only?  If so, they may do further testing to determine why there is increased metabolic uptake.  Sometimes PET scans give false positives.  I had a PET scan that showed a hot spot.  We confirmed the recurrence through an MRI, then a needle biopsy.  Your friend's onc may order additional tests to confirm any diagnosis.  If it is a recurrence, then I'd ask what treatment plans are recommended.  Ask about any clinical trials that may be available.  Also consider a second opinion from a NCI or NCCN facility.

Wishing you and your friend the best and hoping these are only false alarms.

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



Posted By: trip2
Date Posted: Mar 06 2011 at 4:40pm
Hi Craig,
 
All my best wishes the spots prove to be nothing. 
 
Your friend is lucky to have you as her rock.  I imagine she is pretty nervous so having someone who cares there for her will mean the world.  It's hard to know what if anything is going on until you speak with her Oncologist.
 
Let us know what you find out and hopefully we can help if you need it.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: zoomommy2
Date Posted: Mar 06 2011 at 4:53pm
Craig,
You being a rock for your friend is invaluable!  Hopefully, some further confirmation of what those spots are will be done.  Praying that those spots don't turn out to be anything serious.   There's always something new to try.  Thank you for being there for her.
Lee in Denver


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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


Posted By: Craig76
Date Posted: Mar 06 2011 at 8:32pm
Thank you all for your comments and good wishes. 
 
Thank you Donna.  Yes these spots were found after just a pet scan.  She waited four weeks is all.  I have read up on that and it seems like sites are split as to what sort of time frame a person should wait after radiation.  Most of them are saying you should wait longer than a month though.  Thanks again for your input everyone.  This site has really helped us out through this ordeal.


Posted By: 123Donna
Date Posted: Mar 06 2011 at 10:31pm
Craig,

I found this link and info about the wait times before a PET scan.  Maybe it was done too soon and just a false positive?  Hoping for the best.

http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=2416 - http://www.oncolink.org/experts/article.cfm?c=4&s=36&ss=116&id=2416

A PET scan should be performed at least 4-6 weeks after surgery and 4-6 months after radiation therapy. If performed earlier, inflammation secondary to surgery and radiation can be seen as false positive findings on the PET scan as these are FDG avid or tend to "light up" on the scan.



-------------
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



Posted By: Craig76
Date Posted: Mar 08 2011 at 11:15am
Thanks Donna.  She had a pet scan I believe four or five weeks from her radiation treatment so maybe some of the spots that they found could very well be false positives.  She is showing symptoms of an eflamed lung so I am hoping at the least that the lung spot is a false positive.  She is going to start chemo tomorrow.   Good news though for her is the place that was radiated destroyed all the cancer....nothing left at all...she had spots that they did not think the radiation would help with and those are all gone as well.  Her Onc had told her last time she could test any spot on her right side and she would have found cancer but now it is all gone.  Just so amazing to me. :)  We just have a spot on her left side that is above her chest wall but not quite in her chest.  She has a couple spots on a lung but I am hoping those are false positives...and there is a spot on he T-12 bone.  So most of the cancer is gone and I am so thankful for that.  Going to go see the onc tomorrow to see what her chemo treatment will be like and go over any other options.


Posted By: 123Donna
Date Posted: Mar 08 2011 at 11:44am
Craig,

Sounds like the radiation was a success.  Please keep us posted.  I'll keep my fingers crossed that the areas are just false positives.

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



Posted By: Craig76
Date Posted: Mar 09 2011 at 7:30pm
Well went to visit the onc for a follow up to the pet scan.  Basically she said my friend was going to die from breast cancer and there was nothing she could do.  She did not give us a time frame though so I know there is some time to put this cancer into remission. She showed us the pet scans, well I peaked over her shoulder, and the side that she had the cancer on was almost clear.  She had a fairly big spot on the other side of her chest, it was not on her chest wall though.  She said it was in a few bones, she mentioned some lymph nodes in the middle of her chest were infected and there was a spot on her lung.  She is going to be put on a chemo combo of Gemzar/Carboplatin.  Also she is getting a fluid that makes her bones stronger every few weeks.  The only good news that onc had for us is she has a lot less cancer than she had before.  The onc said some cells just escaped out the back door when they did radiation.  A couple of questions I guess has anybody had this combination of chemo and did it work for them.   Also, I asked the onc if we could do radiation as well since it worked so well the first time but she said the mixture of the chemo and radiation has some bad side effects and does not work well together anybody heard of that?  She just really sucked the hope right out of us today.  I know stage four cancer is terminal but the onc just sort of laughed at us when I suggested she might live a long time even with this disease but I read about people living fairly long lives all the time on the internet.  Today was just so hard because it seems like things have worked for her they just missed some cells that have raised some havoc.  We do have a second opinion Monday at a fairly reputable hospital so hopefully there we can get on a trial or something or at least get some ideas about other treatment options.   Thanks for your support everybody. :)


Posted By: dmwolf
Date Posted: Mar 09 2011 at 7:50pm
Craig, I'm really sorry.   What terrible news for your friend and all who love her.  How old is she?
Please tell her we are here to support both of you as she navigates her way through treatment decisions and such.
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.


Posted By: 123Donna
Date Posted: Mar 09 2011 at 8:17pm
Craig76,

What a terrible way to talk to you and your friend.  I'd consider looking for a new onc.  I think it's a good idea to get a second opinion.  Dr. Lisa Carey is very knowledgeable about TNBC and she's at UNC.  Have you considered meeting with her?

I had a recurrence in an internal mammary node that was found through a PET scan back in October.  I started the Carbo/Gemzar/Iniparib trial (BSI-201) on December 6, 2010.  I had a follow-up MRI in February after 3 cycles of treatment and it showed no evidence of disease.  I still understand there could be some stray cells that aren't picked up by the MRI, so we're continuing with 2 more cycles of treatment.  Since I'm BRCA negative, I don't know how much the Iniparib helped or if it was all 3 drugs or just the chemo that helped me.  This chemo seems to work for some and not for others.  I hope it does for your friend.

Keep us posted.  We're here for you and your friend.

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



Posted By: monely
Date Posted: Mar 09 2011 at 9:26pm
Craig,
 
My name is Monely, I am a first time user too, in fact the reason I joined this website is because I was drawn to your story.  My Mom was diagnosed with the same exact thing.  She had stage 2 TNBC, she had surgery, aggressive chemo and radiation and was kept under diagnosis for about a year.  About a month ago she had a tender spot on her sternum so we went to the doctor for tests: CT scan, MRI and etc.  Well we were then told her cancer was back in her sternum, a lymph node near her underarm, her lungs, and a spot in her liver. Her oncologist who in my opinion had very poor bed side manner, told her she was going to die and that there was not much any of us could do. Well we spent a week or 2 crying as if life was over. Then we decided we had to change her doctor. 
 
We met with her new oncologist who although was in agreement about her cancer being back, told us that there was nothing indicating how long she had to live.  He did mention that he could prolong her life however he could not provide us with anything definite as to how long she would live or how soon she would feel better.  The most important thing he has done is to give her hope., unlike her previous doctor he is both honest about the seriousness of her condition and  hopeful that treatment can help her live longer.
 
Either way I am not ready to give up on my mom, I think it is important to not give up hope, I don't know about your friend but my mom looks healthy and full of energy, how can we possibly just assume someone who is walking and full of energy is supposed to just give up and accept death.
 
Please please please encourage your friend to get 2nd and 3rd opinion.  It is very important for her to emotionally trust her doctor and feel hopeful and have someone on her side who will help her fight all the way.
 
Please keep me posted I would love to hear more about your friend's treatment.
 


Posted By: Craig76
Date Posted: Mar 10 2011 at 1:36pm
Monely 

Welcome to this site.  This site has been such a blessing, so much information and support here.  I am very sorry to hear about your mom.  We are getting a second opinion from a pretty good hospital next week on Monday.  At the very least I am hoping this visit does what your second opinion does and that is give her hope.  Like you are with your mom, I am not going to give up on my friend.  I have been there for every day of this ordeal and I will be there to see her become cancer free.  I know there are so many treatments out there, we just need to find the right one.  People can live with stage IV for years, even decades so do not give up hope.  It is just amazing the power that oncologists have.  I believe for the most part they do not understand how much power they have.  I am glad you found a good doctor and I hope your treatment works for your mom.  I will keep you posted on my friend, she is a fighter, I have no doubt she will put this cancer into remission. 


Posted By: Falcon
Date Posted: Mar 10 2011 at 7:46pm
Graig76,
 
Wow I am sadden for the news you received, but I want to say the power of prayer is so wonderful and he hear's them I know this for sure! Please pray for her and ask for the wonderful gift of healing. I too will be keeping your friend in prayer may I ask her name?
 
 
 


-------------
My daughter Jessica
Treated and Healed!!!!!


Posted By: monely
Date Posted: Mar 10 2011 at 10:43pm
I agree Craig, they will both beat this because they are just amzing fighters...best of luck and good wishes to your friend. You are both in my thoughts!


Posted By: 123Donna
Date Posted: Mar 11 2011 at 7:39am
Craig or Monely,

Welcome.  You both are wonderful caregivers to your loved ones and that makes all the difference in the world.  Never give up hope.  A new drug or treatment may just be around the corner for us TNBC.  There are some wonderful and caring oncs out there in this world.  If I had one that had a horrible bedside manner or wasn't responsive to my questions or needs, I'd immediately fire that one and look for another one. 

Second and third opinions are great, especially when determining the next treatment plan.    Dr. Ana Maria Gonzalez, at MD Anderson in Houston is a highly recommended oncologist specializing in rare and aggressive breast cancers like TNBC.

http://faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111 - http://faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111


-------------
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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