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dorothee View Drop Down
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    Posted: Nov 07 2019 at 10:44am
Hi everybody,

First I apologized about my english but I'm French so it's not easy for me

I'm Dorothťe, i'm 45 years old. In June, I have diagnosed stage 4 grade 4. at the beginning, it was difficult to accept because i'm not so old, i'm marathoner, I ran all the time and suddenly i can't run a mile. Nobody in my family have never had a breast cancer... But i have no choice and i decided to face the disease. I would like to have informations and I want to know the treatments you have, in France I created my association and I fight to have immunotherapy. is it to use in the USA?
thks you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote WEIMMOM Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2019 at 7:39pm
 Hi:  I have recently been diagnosed with stage 1, grade 3 TNBC.  I was fortunate to discover a 1.5cm lump just 4 months after a mammogram.  I had tests done, biopsy and mastectomy on right breast within 3 weeks of finding the lump.  I became septic 12 days post operative.  I have kidney disease (FSGS) and nephrotic syndrome, Rheumatoid arthritis as well as MGUS.  I see on most posts and articles that Chemo is recommended, however, my kidneys are already compromised.  I am also extremely anemic at 72.  Any one else ventured this road with the existing complications I have?  I just turned 63 (day of my results).  Through all this, no one checked my left breast and I kept pushing for an ultra-sound.  Finally my family doctor arranged one and today, I just received the results that I have an elliptical circumscribed solid hypoechoic nodule measuring 4 x 2 x 5 mm with mildly dilated retroareola ducts which there was no indication previously.  Since this cancer is quite aggressive and I have heard that there is a 30-40% risk of it occurring in the other breast, I am concerned.  Any suggestions?  Thanks and my best to all of you who are on this journey!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2019 at 12:46am
Welcome Linda! It's true, no body scanning is usually done unless she has something unusual going on. With TNBC and lumpectomy they usually do mammograms every 6 months for at least two years. If she has dense breasts or lots of scar tissue from surgery or necrosis from radiation she could get a breast MRI once a year - mammogram once a year, MRI once a year, staggered every six months. If she does have any new weird body pain that persists for more than a week she could get some kind of scan. A year ago I got sciatica in my lower back. It was horrible and it didn't go away after a few weeks. My oncologist ordered a bone scan.Luckily it was all clear, further MRI showed it was just a screwed up couple of discs (surgery in February gave me much relief). I gotta say, I was right at my 2 year post treatment  mark and it was awesome to have that full body bone scan come up clear. I wish there was a test they could do for our peace of mind if nothing else. But with them costing like $5000, that's not gonna happen. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote llkehm Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2019 at 2:21pm
I am new to the forum and am writing on behalf of a 72 y/o friend treated with lumpectomy, chemo and radiation for HER-2 neg grade 3 invasive ductal cancer. Insurance refused to pay for an annual CT of chest, abdomen, pelvis because she exhibited no new signs/symptoms of breast cancer-this based on the Medicare National Coverage Determination. Is this standard ? Is it worth appealing?

thanks so much, Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 4:35pm
Yes, doctor recommended it.  I was on board to get the bilateral mastectomy from the beginning.   I'm BRCA negative as well.  I'm fighting for my right to choose the treatment I want.   Thank you for support and your story.  Your story gives me hope.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 4:33pm
Doctor is fighting for me too.  They said they did not have all the information.   I know that did.  An ER doctor made the decision.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 9:38am
Hi,  Sorry to hear that your insurance isn't on board with the double mastectomy.  Did your Dr. suggest that this is what you should do?  I'm surprised that if this is what you desire to do that they wouldn't allow it.   I do not have the BRCA gene, I had tnbc Stage 3c with 3 underarm lymph nodes as well as my chest wall lymph nodes with cancer.  My Dr. told me that a lumpectomy was the way to go.  I had chemo first and then the lumpectomy.  I am now 7 years from diagnosis and doing great.  This is a very personal decision and you should be able to have the double mastectomy if you want.  When you get this diagnosis you should not be under this stress on top of it all.  Good luck.  
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2019 at 11:26am
Hi Deanna,

I'm so sorry you are dealing with insurance issues.  It's not right, but many of us have had to battle them.  What is their justification of denying the bilateral mastectomy?  I was stage 1 and had no problem with insurance approving a bilateral mastectomy.  Hope you get the results you want and your surgeon is fighting the battle for you.

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 dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2019 at 11:15am

Hi All!  My name is Deanna and I was diagnosed in September with TNBC.  My BRCA is negative for mutations.  I am waiting to have surgery depending on insurance approval.  They have denied a bilateral mastectomy and will only do the affected breast.  I am in the middle of a battle with them right now for approval and a peer to peer will take place Monday, My surgery is supposed to be Tuesday.

Will follow surgery with chemo.

IDC grade 3 Stage 1b, 15mm lump.

My emotions run wild all the time.  I'm ready to get treatment started and the insurance company to approve the double mastectomy.

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Judi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 8:20pm
Hi everyone, my name is Judi and I am a newbie here.  I was diagnosed last September with THBC. I started chemo right away. the first round of AC went well, never got sick just tired and no appetite.  By the second treatment my hair fell out by the handful, so I had my head shaved.  Didn't know that your hair kept you so warm, about froze till I found ski caps to wear, 
Then I was 1/2 through the 2nd type of chemo Taxal (?) when I got chemical inducted pneumonia, hospitalize for 2 weeks,  I was pretty much over the pneumonia when I had to go the ER for 18 hours as it came back. I am doing better, but still on oxygen most of the day. I need to rebuild my energy level.
I know all though I have had set backs, that I have had it far less than most, and for that I feel both grateful and sad for the others.
Hopefully I can have surgery soon to get this beast out of me forever.  My prayers and best wishes to all of you
Judi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 11:29am
Dear Deb, I had some emotional unravelling after chemo - panic attacks, depression, some obsessive/compulsive behavior very uncharacteristic of me. It was the fallout of my body and psyche being assaulted over a period of a year with chemo, multiple surgeries, and fears about dying. I found a great therapist who helped me through it. Steve's suggestion is right on the mark. Please do reach out as he suggests, and I think you will find a caring person who can help.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 10:11am
Dear Deb,

Welcome to our wonderful, supportive family.

I am glad you wrote and have a suggestion. Please contact the hospital where you were treated and see if they have a Supportive Care unit. They should be able to make a referral to a professional who can give you some psycho/social support to help you with what you are dealing with. Ideally, someone who is an expert in cancer and the anxiety it can cause.

Please seek some professional help. There is no 'easy' here, from my experience but a good therapist should help.

with warmest wishes for as good a Thanksgiving for you as possible.

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 James123 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 10:11am
Hi I am new to site. I was dx with TNBCstage II B in June 2018. At time officials I had a 2.2 CM tumor in my breast and a 3.4 CM in a lymph node. I received 4 A/c followed by 11 Taxol. I didnít receive Car k eve though I requested it. I was advised it could be used after surgery. I met with my surgeon yesterday and received latest results of my MRI which showed breast tumor shrunk to 1.6cm and lymph node to 3.0 cm. I was disheartened when I received the results. She advised me she was moving ahead with surgery later this month with plans to remove all of my lymph nodes in my right stem and a lumpectomy of right breast.

My oncologist says she is not sure that the lymph node is is still infected despite the size of the tumor. She wants me to have the surgery and if there is still cancer there then she will add Carbo after surgery.. I only got 11 Taxol due to neuropathy setting in. Has anyone out there experienced this ? And if so can you give me feedback on if this is standard protocol or should I seek a second opinion?

Thank you

CJ
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debstrong Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 9:59am
i am falling apart after chemo. terrible anxiety , panic, fear and mild depression. fighting to get out of the house. what the heck? 

Edited by debstrong - Nov 22 2018 at 10:00am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2018 at 11:45am
Dear Emoser17,  I am a 12 year survivor of TNBC.  I am not a doctor, but I have done a lot of research since having TNBC.  Also, I volunteered for 8 years at the oncology clinic where I received my treatment.  I never remember a single patient diagnosed with TNBC, not get chemotherapy.  Since the cells travel through the vascular system they can escape into the bloodstream even with a early stage diagnoses.  The reason for chemo is to seek out those rogue cell and kill them before they hide somewhere in the body and lead to recurrence at a later date.  Also, not all oncologist are up to par in their knowledge of how to treat TNBC.  It is a different animal from other kinds of breast cancer. ie ER, PR, Her2.  The oncologist I had believed aggressive treatment from the initial diagnoses gave the best outcome overall.  We only have 1 time to treat it aggressively and that is when we are first diagnosed. 
I will say that the emotional  effects of the diagnoses and treatment become more pronounced as time goes by after treatment.  My worst time was the first 5 years after I finished treatment.  Some family and friends keep their distance when you need them most.  I know now that they were afraid of what I would say if they asked questions.  Even my own daughter did not know how to deal with the fact that I had cancer.  In my case, my husband was such a strong support person for me that it made up for some of the others.  It was a lonely time and I have been forever changed since having cancer.  I am the new me, but it took time to fine the new me.  After 5 years I began to be able to relax and believe that I was going to live. 
Dear, keep posting and let us share with you and support you through this journey.  I will not sugar coat TNBC cancer, but with the help of supporters and God you can make it.
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 7:11pm
You said:
< I spoke at great length to my oncologist but she said that because of the size, aggressive surgery and no node involvement that chemo would cause more harm than good. She even showed me the stats from the NCCN Guidelines that backed her opinion. I am curious to hear from anyone else who also didn't need further treatment? >

My wife had lymph nodes cancerous, so there wasn't any choice but to have chemo. I think you should trust your oncologist, and ask him/her what percentage in 5-year survival-without-recurrance is improved by having chemo.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2018 at 5:07pm
Emoser, I noticed I was much more emotional after treatment had finished for me (first time around) than when I was going through it. Many ladies Iíve talked to have said the same. I think we just bunker down and put our game face on, but when the game is over and you look back you see what youíve just gone through in a different light. Especially when you start to feel good and normal again realizing just how low treatments took you. Many people think BC is so easy because itís a common cancer and you hear about so many successful stories, but cancer stays with you mentally and emotionally NED or not. Many people come out of treatment with PTSD or another mood disorder actually. What you are going through is normal and might take some time to sort through.
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Emoser17 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2018 at 5:17pm
Hi,  I am new to this site.
I was diagnosed 6/21/18 with stage 1 IDC, triple negative breast cancer.  I found out soon after that I was also BRCA 2 positive.  I had a bilateral mastectomy 7/25/18 with no lymph node involvement and the beginnings of reconstruction.  I had a hysterectomy (prophylactic because of BRCA 2) and further reconstruction on 9/21/18.  It has been a medical whirlwind the past few months.  
I was told that I did not need any further treatments (radiation or chemotherapy).  This news pleased me, but also worried and still worries me.  I spoke at great length to my oncologist but she said that because of the size, aggressive surgery and no node involvement that chemo would cause more harm than good.  She even showed me the stats from the NCCN Guidelines that backed her opinion.  I am curious to hear from anyone else who also didn't need further treatment?  
The BRCA 2 confirmation for me was not too traumatic, but my daughters (26 & 24) were also tested.  One tested positive and one negative.  That is harder for me to deal with for my daughter to have to deal with some bad genetics.
I am still trying to understand as much as I can about my diagnosis. There is a steep learning curve with a diagnosis.  
I was told early on that I was triple negative.  I understood that my cancer did not have hormone receptors and therefore could not be treated with hormone based meds.  I did not understand the seriousness of triple negative.  I am still learning. 
I have been very lucky to have a loving and supportive husband, daughters, family and friends through out my surgeries.  I know I still have their love and support but now that the surgeries are done and I am not undergoing treatment I feel that my people feel my cancer scare is fine and over.  Although I am feeling well physically, I am only now really grasping the emotional part of everything.  I don't feel that anyone wants to hear about it.  I am hoping to get to know people who understand not only the physical but also the emotional parts of this diagnosis.
Thanks for "listening".
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shanghaiedsherry Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2018 at 7:57pm
123Donna,

I am at reconstruction stage, but 1st visit to plastic surgeon was disappointing. His only recommendation was a breast lift and reduction in size of the healthy breast due to radiation and supposedly because the oncologists don't like fat grafts due to calcifications. Am due to see original breast surgeon and 2nd opinion.

What was your experience?

Shanghaiedsherry
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shanghaiedsherry Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2018 at 7:51pm
Hi Everyone,

I'm Sherry from Wylie, TX, suburb of Dallas. I was DX with TNBC December 2017. Dissection 1/2018. Stage IIB, Grade 3, 1.2 cm with satellite tumor .5 cm. 1 of 3 nodes positive. 4 cycles of Taxotere/Cytoxan and 33 cycles of radiation.

Prognosis was not great. Chemo and radiation gave me 72% survival rate. I'm white, 65 yrs, relatively healthy, slightly overweight, no history of breast cancer in family. BRAC 1 & 2 negative. Daughter, 39, diagnosed with DCIS in October 2017 & sister, 63, diagnosed with ALH in January 2018.

Glad to find this group.
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