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Am I in the right place?

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Tohsren View Drop Down
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    Posted: May 10 2010 at 8:25pm
I'm not sure if I am in the right place or not.
 
I was diagnosed last Tuesday with "infiltrating ductal carcinoma grade 3."
 
I found out Friday that I am ER-negative, PR-negative, and HER-2 negative.
 
Is this what the triple negative breast cancer means?  All she told me was that it meant it was a "very aggressive cancer."
 
I am 34 years old, and found the lump about 11 months ago, but everyone told me that cancer doesn't hurt, so it can't be cancer.  So I postponed going to the doctor, since it was most likely a cyst, and I can handle pain somewhat.
 
About a month ago, the pain got so bad that I could not sleep at night, and my arm started going numb at times, I started to lose feeling, and I couldn't always control my movements.  I finally went to the doctor.
 
Now I am in constant pain, and I can't sleep.  I have been diagnosed, but because of insurance issues, the MRI and lumpectomy surgery (I think that's right?) have been postponed, so I still don't even know what stage I am in.
 
The tumor is somewhere between 3 cm and 5 cm in size.
 
I am completely bewildered, and confused about my diagnosis.  Any help or advice would be greatly appreciated.
 
Thanks,
 
Tohsren
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 9:14pm
Tohsren,
Am I reading this right? They have postponed your surgery to remove the tumor???? Surely Not!
Usually with a tumor that size, they do what's called neo-adjuvant chemo...that simple means they try to shrink it before they remove it. Makes it easier to get clear margins.
We have discussed here many times, that breast cancer CAN hurt. My recurrence tumor hurt.
You have come to the right place. We have many loving, caring, knowledgeable people here. I'm not up on all the treatments like some are and they will get here soon and help you understand this more. Until then go to this site and read the brochure on TNBC.
 
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 9:23pm
Tohsren,

Yes, you have come to the right place.  Why did they postpone the surgery?  Are they going to do neo adjuvant chemo first to try and shrink it?

I'm sorry they aren't moving faster on your care.  It doesn't sound right and maybe you can find a patient advocate that can help you navigate through the insurance issues.  One thing we've learned from the smart women on this site is we have to be our own advocate for our care and speak up when we feel we're being ignored.

We're here for you and will help you in anyway we can.  Please keep us posted and ask questions.

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 CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 9:49pm
Oh Tohsren,  I'm so sorry you are going through this, but you have definitely come to the right place.  Darn the insurance; you go get the treatment you need.  It has been shown that getting chemo before surgery in order to shrink the tumor is quite effective.  They can also get an idea of which chemo works on your tumor. 
 
I agree with Donna that you need a patient advocate and start to advocate for yourself.   What many of us learned in our  triple negative breast cancer journeys is that few general oncologists know a lot about TNBC.  You need to find the best; the ones that are on the leading edge.  You can get a lot of help here.  If the doctor that you went to is not moving fast enough or if you need another opinion, go where you need to in order to get satisfaction and confidence.
 
TNBC is a sucker and if not treated aggressively, quickly, it may return. 
 
I know this is a lot of information all at once, but I need to ask you if anyone as spoken to you about genetic testing.  Many who are positive for a specific genetic mutation (called BRCA) tend to get TNBC.  If you are BRCA mutation + there are other treatments that have shown much promise. 
 
If you would like to call me, just email me your phone number and I'd be happy to talk with you. 
CarynRoseataoldotcom.
Sincerest hugs,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Tohsren View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tohsren Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 10:55pm
You guys have been amazing, and I want to say thank you so much.
 
I didn't have insurance at all, so I was paying out of pocket for all the tests, lab work, and biopsies.  (Let me tell you, that was over $5k and I haven't even gotten all the bills).  Once I was diagnosed with breast cancer, I was eligible for our state medicaid, which will take care of all of the rest of the bills.  Unfortunately, the surgeon I was seeing doesn't accept medicaid.  So I had to wait a week in order to get the temporary insurance in order to see another surgeon, who will schedule my MRI, and the surgery to examine my lymph nodes, in order to see what stage I am.
 
So I have been waiting a week for answers, and it has been tough.  I finally got a call late today and the new surgeon agreed to squeeze me in tomorrow.  I doubt she will be able to do much tomorrow, but I am hoping we can get the MRI and surgery at least scheduled.  My family and I would feel a lot better about it.
 
They told me without the insurance, I simply could not afford treatment.  It's not pretty, but it is true.  So we played the phone tag and pray waiting game.  I do have the temporary insurance now, and have applied for the permanent medicaid.  Now it is back to the waiting game.
 
Everyone desperately wants and needs to know what stage it is, so that we can at least start some type of treatment.
 
They do want to do the try to shrink the tumor route, they said even with my sizable breasts, the tumor is so large that they would take most of it, so a lumpectomy isn't really an option at the moment.  I am confused on how big it is, though.  The radiologist told me it was about 5 cm, but the surgeon said it was 3 cm (after she said the actual mass under my breast was about 5 in x 5 in) so I'm not sure what to believe on size.
 
I guess I am just massively confused, lol.
 
Again, thank you all for the information, I am one of those people that I need to know it ALL.  I even look up every drug information sheet before I will take a pill.  I am glad I found this community, and I hope to be able to be a part of it.
 
Tohsren
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 5:56am
Dear Tohsren,

Welcome to TNBCF, a wonderful resource...

Don't worry about hoping to be a part of this community...you already are...

Also, if you speak to your providers you may find that because you are on Medicaid you may not have to pay every penny of the $5000- you already owe (with as you say more to come). If you explain your financial circumstances and the fact that you cannot pay fully you MAY be able to get some of your providers to reduce the amount that you owe. Many time hospitals will settle for less in circumstances like this. They don't advertise that they do, but they do. And if they come to some kind of agreement with you, please make sure that you get some paperwork that a settlement has been reached and the matter is closed so that they don't hassle you in the future..

good luck with your medical treatment and of course, that is the most important part of this journey but the financial part can be very stressful as well and I wanted to suggest a way to lighten your load..If you can this may help you to focus just on your health and worry less about the $.

all the best,

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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outnumbered View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 10:26am

Dear Tohsren,

 

Welcome and I am sorry you have reason to be here.  You sound a lot like me in that knowledge is power.  This site is a valuable resource.  Please browse through the resources and tips page. 

 

This all may seem overwhelming, however, it is especially important for you to know what to ask for.  I have a few friends that were on Medicaid when dx with bc, and let me tell you, if you do not ask, you will not get!!!!  Even with insurance you need to be your own advocate, but even more-so without. 

 

Also, to reiterate what Caryn said, ask about BRCA testing.  You should do this in conjunction with a genetic counselor.  Not only can it affect surgical decisions, but as Caryn said, there are some other treatment options that may also be available.   And to reiterate what Steve said, try to make sure your dr is triple negative savvy.  I know you don't have carte blanche regarding drs, but do your best.  Sometimes drs don't know what they don't know. 

 

If you ever need anything, this is the place.  We are providers of information, cyber hugs, prayers, and strength. 

 

Best wishes!

 



Edited by outnumbered - May 11 2010 at 10:34am
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 1:19pm
Tohsren Dear,
I am so happy to see all our "experts" have showed up. You can ALWAYS count them to help you through this. Ask any questions you have. They will do their best to get them answered.
I am here to encourage, sympathize, and sometimes make you smile. I also want to invite you to join us on the Spiritual Support thread where we do a daily devotional and request specific prayers. We have a group of pray warriors there and if it's something you'd be interested in , we'd be happy for you to participate.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 4:37am
Tohsren, you mentioned you have an appointment with a surgeon. Do you also have an appointment with an oncologist? If not, you should get one ASAP.

The surgeon won't necessarily give you the information you need to decide whether to do chemo before surgery. (Mine didn't, and I had to fight to get approval to see an oncologist, and it's a good thing I did.)

With a tumor that's the size of yours, and that's been symptomatic for a while, I would guess that an oncologist would advise starting chemo very soon. If you can't get the scans done for staging right away, I'd ask the oncologist whether to start chemo even before the scans.


Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.

4xAC-->dd Taxol. Dbl mast, 6/10. Radiation, 8/10. NED since June 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 10:47am
I agree with Nina, Toshren.  Treatment-wise, it doesn't really matter at this point whether your axillary nodes are positive.  The whole staging thing is pretty useless unless you have a very small breast tumor and there is some chance you can avoid chemo altogether (or if you have extensive stage IV mets and might want to do a less toxic weekly chemo).  In your situation, with a large breast tumor and nothing obvious going on elsewhere other than possibly some nodes, you are doing the big-guns chemo either way.   Neoadjuvant (chemo before surgery) is better because you'll get information on whether the drugs are working, and if not you'll have the opportunity to switch drugs mid-stream (what I did).  

Good luck, and keep us posted!  We are here for you.
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 Sandra Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 11:48am
Toshren,
You sound just like my story.  I had pain first and then noticed a lump.  I went to ob/gyn and he referred to surgeon who did biopsy and said it wasn't cancer.  Then the pain got worse, so I went back to surgeon and he did chest xray and said everything is Ok.  Then I had to go back to ob/gyn to get referrel to a different surgeon and he diagnosed me in Jan 10 with Stage 3 triple neg bc with lymph node involvement.  I am at this point doing diet and supplements to assist my body in fighting this cancer off.  I don't know if what I am doing is the right thing, but after you read the many blogs, what the dr's are doing is not working either, re-occurence is so prevalent.  If you want to discuss more, contact me.
Keep Believing,
Sandra
DX 1/14/10 TNB IIIC with one lymph 8 taxol 3 cisplatin 4/7 Dr cant feel tumor
occ in same breast and chest wall on 10/10 other breast and lymph Gemzar/Carboplatin lotto for Parp
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 1:11pm
Sandra, what are you taking supplement wise and what are you doign with your diet.. Thanks for the info.. Autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sandra Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 10:47am
Autumn,
I am using in Integrated doc in Kentucky, I live in Alabama, and following his protocol of supplements.  I don't think it would take me a very long time to list everything that I currently take.  I will be happy to discuss more with you if you would like to pm me I will give you my phone number.  I am also eating all organic and gluten free. 
Sandra
DX 1/14/10 TNB IIIC with one lymph 8 taxol 3 cisplatin 4/7 Dr cant feel tumor
occ in same breast and chest wall on 10/10 other breast and lymph Gemzar/Carboplatin lotto for Parp
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tohsren Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 11:47am
Everyone has been wonderful here, and I want to thank you again.  I finally got approved for medicaid, and since then everything has been a whirlwind.  I think I had 6 doctors appointments last week, and surgery Friday to put in my port a cath.  I am in a lot of pain.  My lump is on the right side, and I can barely move my arm because of the location, and it's pressing on all the nerves in my arm.  Of course, they put the port a cath on the left side, since it always has to be on the opposite side, so since Friday evening, I haven't been able to move my left arm, either.
 
I feel rather pathetic, and helpless.  I can't even pick up a cup of coffee.  I am lucky if I can get a sip before I have to put it down before I drop it.  It's rather frustrating.  I can't shower by myself, or barely even eat.  My fiance and/or my daughter have to help me get dressed.
 
I am still in good spirits other than the feeling like a retard who can't do anything.  I just hope the port a cath pain goes away soon.
 
I have a PET scan and CT scan scheduled for Tuesday.  Hopefully then we will know what stage I am in.  I also have to be tested for the BRCA genes.  The oncologist said that will have an affect on my treatment.  I start chemotherapy this week too.  I am quite terrified of the PET scan and the chemo.
 
I am trying to stay connected when I can, so please bear with me while I try to get the use of my arms back, lol.
 
Thank  you again for all of your support and advice.
 
~toh
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 12:05pm
Hi toh, I'm a little concerned that you have issues and pain with your left side with the port. The port should, at most, be an annoyance but shouldn't cause pain or make it hard to use that left side. Perplexing.
 
On the PET scan and CT scan, they will ask you to drink something hours before the scans. For me, who is allergic to all the fake sugars I found myself sickened by the drink as they use the fake sugar to add taste to the drink. So, not to worry, if you also suffer from that allergy, just tell them and they will have another drink for you.
 
My first CT scan and MRI I was terrified. Someone here told me to take a minute or two before actually laying down to walk over to the machine and whisper into it's big cavity, "I own you sucker!". Then the techs asked what music I wanted to hear in the ear phones, they put a nice warm cloth over my eyes, rolled me in and I wiggled my toes to the beat of John Mayer. I was almost embarassed at how easy it turned out to be!
 
The big thing for me about the chemo was participating. I couldn't bear to turn my life over to strangers and large plastic bottles of battery acid stuff they were going to pump into me. So I set up this routine, the nurses would come over with the tray of all their tools and I would make sure they had the right name on them, noted any allergies I had (I don't do Lydocaine or plastic bandages), told the nurses which side (even though they already knew) etc etc.
 
I asked the doctor to cut my doseage of the Dex in half after the first time and kept track of my responses. It may not sound like much, but stepping up to the plate to supervise your treatment makes things way more bearable. Remember to ask and if necessary re ask for copies of your tests and you can take the time while you're having infusion to organize them in a 3 ring binder.
 
The fact that you're being tested for the BRCA and that your oncologist says the results will impact your treatment means to me that you definitely have what I call an enlightened doctor. Congratulations!
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 zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2010 at 3:53pm
Tohs,
I was glad to start my chemo.  I felt like I was finally doing something to kill the beast.  I felt empowered.  I never had nausea during AC or Taxol.  Yes, my hair fell out, but it's only hair, and will grow back.  I'm more nervous not being on chemo since I couldn't finish the 12 weekly Taxol treatments due to a complicated gall bladder surgery after 7 Taxol treatments.  I've had CT scans and MRI's but no PET scan.  I didn't have a problem with them.  You will do fine!
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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