Support Groups
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=5540
Printed Date: Mar 26 2026 at 11:25pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: Support Groups
Posted By: arleneb
Subject: Support Groups
Date Posted: Jan 15 2010 at 11:29am
| In partnership with CancerCare, we are very excited to offer online and telephone support groups for those diagnosed with Triple Negative Breast Cancer. Each group will be moderated by a professional oncology social worker and will be 12 weeks in duration. Please email us your contact information and your group preference (online or telephone) at mailto:moderator@cancercare.org - moderator@cancercare.org . |
Replies:
Posted By: mainsailset
Date Posted: Jan 16 2010 at 11:24am
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Hi Arlene, I just signed up but I'm wondering how this will work. Are you trying to set up conference calls where members can call in with questions or are you planning on the social worker working off topics each time with a discussion then opening up for questions?
------------- 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 |
Posted By: arleneb
Date Posted: Jan 16 2010 at 5:14pm
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Hi! CancerCare is managing the support groups and they will contact you soon with more information. - Arlene |
Posted By: cubby
Date Posted: Jan 22 2010 at 8:05pm
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Hello Arlene B. I was diagnosed with breast cancer in Nov 2009. On December 14 2009 I had a modified radical mastectomy on my left breast. My oncologist told me on Jan 21, 2010 I had triple negative breast cancer and had a 6.5 mil. nodule in my lower lobe. I am going for a needle biopsy on Monday Jan 25. I have not been staged or told what chemo I am going to receive. I do know that it will be once every 3 weeks for 6 monts.
I am really scared and confused. It seems that every time I turn around I am given bad news (worst case scenaro) My husband researches everything even mentioned in the reports and the tells me even worse news. He thinks I should know everything he researched so I will be prepared to receive bad news.
I have post traumatic stress disorder and suffer from major depression. I have been treated for 10 years and still take 5 antidepressents and 2 anti anxiety meds. So, I get freaked ou in the doctors office. My husband trys to talk to the doctor and explain to me simply in the office. However, he and I hear different things. So I am living with a man who prepares for the worst but is happy when everthing holds out. I am feeling desparate, sad and alone.\
I have a strong relationship with God. He encourages me. I feel relaxed and great after church, prayer, devotional time and in my ladies bible study group. Then I come home and he starts the same bad news again. I need some hope and help in dealing with my husband. He was very hurt when I told him how I felt.
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Posted By: 123Donna
Date Posted: Jan 22 2010 at 8:45pm
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Hi Cubby, Glad you joined and you'll find some great support from this forum. I'd like to make one suggestion. Can you repeat your post under TNBC Forums - Welcome From TNBC Foundation? You can copy and paste it. More of the members will see that post and reply to you. It's very difficult to tell others, especially your husband, how much information you really can handle. Some people want to know every little detail and news and others prefer not to know. There is nothing wrong in either scenario. It's how we cope with the situation. It's OK if your husband is researching as much information on your disease, but he needs to understand the limits of what you want to know. It's OK to say you don't want to hear anything at this time and you'll let him know when you're ready to talk about it. He may be hurt at first, but hopefully when he understands that the information is doing you more harm than good, he'll keep things to himself. 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: pmg1959
Date Posted: Jan 22 2010 at 10:24pm
| hi i have triple negative breast cancer and having a very difficult time i have been taking kemo and still am i can't eat anything i have loss 2 ilbs which i could not afford and in the hosptial every 2 weeks getting blood. i am at loss for not one i know has this. what are my chances with this. |
Posted By: Carol (Tenn)
Date Posted: Jan 22 2010 at 10:45pm
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Dear Cubby and Pmg,
Welcome to you both. You will both be surprised by the loving care and understanding and encouragement that you will receive here.
Go to this website and look at the brochure that's there explaining all this. You can even order your own...it's..... http://www.lbbc.org - www.lbbc.org
Also, on the main page of this site is an explanation of the type of bc we have.
This sub/type of breast cancer is comparatively rare. That's why you haven't heard of it. The foundation and each one of us here are trying to get our story out. Most doc's don't even share the diagnosis. Mine didin't. Just said I was er- pr- her2- and very aggressive. I found out myself that it had a name!
Everyone is different as far as side effects. One will have a terrible time while other breeze through. No set pattern. As far as longevith is concerned, again we are all different. Some here are 4, 5, 10 years out and longer. I think there is someone here at 20 yrs. But don't think about that...just keep focused on today.
Please join us at our Spiritual Support thread as well.
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 |
Posted By: arleneb
Date Posted: Jan 23 2010 at 9:52am
| Cubby and PMG, Welcome! We're glad you found us but sorry you had to look for us to begin with. You have found the most supportive community available for people battling TNBC. As Donna mentioned, we encourage you to re-post your comments under the "Welcome to TNBC Forum" section or TNBC Talk where more people are likely to read your comments and reply to your questions. Also, please visit the "Resources, News and Tips" area for a wealth of information on TNBC. |
Posted By: trip2
Date Posted: Jan 23 2010 at 6:15pm
Hello and welcome to you both.
We look forward to hearing more about you as you learn. This forum has been like a miracle handed to us in itself.
Please check out the other forums to post as suggested and if either of you have family history you might consider visiting with a certified genetic counselor to see if you qualify for genetic testing for the brca 1/2 mutations. Many brca 1 women have TNBC but most TNBC do not.
Best wishes to you both, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 23 2010 at 6:17pm
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Arlene,
This is wonderful that Cancercare is offering this to patients. Thanks so much for letting us know. Some need this in dealing with this disease. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lillie
Date Posted: Feb 03 2010 at 12:05pm
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Hello Cubby and pmg1959,
I have started a thread in the "Welcome New Members" forum of this site. It is titled ?Calling Cubby and PMG1959. Please go onto that thread and post your messages. We will be waiting to help in any way we can. I guarantee you that many ladies on this site will identify with you totally. Love in Christ, 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 |
Posted By: TNBC Advocate Texas
Date Posted: Mar 01 2010 at 11:33pm
Are you taking Zofran 8 mg pills every 6-8 hours? Zofran is wonderful as it does not cause drowsiness or side effects. Also, Protonix or Nexium 40mg acid reducer when you first wake up works well in combination with the Zofran to keep the nausea down so that you can eat. Biotene toothpaste helps to keep mouth sores away and make the taste in your mouth better. 
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Posted By: kristy
Date Posted: Mar 11 2010 at 1:39pm
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Hi, I just found this site and am so excited! I am 44 and was diagnosed with TNBC on Oct. 8, 2009. I do not know one other person with TNBC. It is so nice to feel like there are others out there with the same thing. I have had lumpectomy, mammo-site radiation, and am currently doing chemo. I finished 4 cycles and thought I was done, but my oncologist said she went to a conference and they recommended 6. I have one more to go. My tumor was 1.2cm and they removed it with clear margins, lymph nodes clear. So, after I finish chemo, I cant wait to sprout some hair. I have heard there are some things that will make it grow faster. When? Ovation? and even a supplement. Anybody tried any of these products? Had any luck? By the way, I have a 15 year old son, and 10 year old daughter. So for the person questioning chemo, that was my reason..s. I will do everything I can to make sure I am here for my wonderful children. My husband is pretty cool too!
Kristy
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Posted By: Carol (Tenn)
Date Posted: Mar 11 2010 at 4:23pm
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Welcome Kristy,
It's always good to welcome new members. It's sad that you need us though. But we are all in this together. You are not alone. We are in varying stages of treatment, of varying ages, (I'm 68), varying side effects. If we can help in anyway, just let us know. If you feel you might need some Spiritual Support, we have that too. There are so many loving, caring, knowledgeable people here. Sometimes we vent, sometimes we praise, sometimes we just share. Again, welcome
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 |
Posted By: wendywoo
Date Posted: Mar 15 2010 at 6:06am
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ADVICE NEEDED PLEASE Dec 09 i had a lumpectomy left breast and all nodes removed whiuch were clear, tumour was 25mm so quite small, it was a grade 3 and had vascular spread but it hadnt spread out of itself (it that makes sense). I have only recently found iot was TNBC although I was told by oncologist it wasnt receptive to the 3 hormones, she didnt expand and i initially declined chemo thinking i had had a lucky escape!!! I also had my genes trested for BRAC1 and 2 because sister had breast cancer at 28, died at 38 and aunt had ovarian cancer died at 59. Have spoken to sisters husband whi said she was given pills and he thinks she was hormone receptive, but this was the 90s so i am not so sure - she had double mastectomy but no node removal (they didnt then), then it came back in her nodes, then came secondary in her bones. Genes test says i DONT have the BRAC1 or 2 gene but i do have TNBC - what does this mean? Am i still in danger or does this put me as a unlucky person but i am ok for the future? Am off to oncologist today and she is going to get it from me, cos all of their publications is all about Hormone Receptive Cancer and she doesnt even tell you wat TNBC is or what it means - i am expecting a row today. but i need to lknow what it all means for me in the bigger scheme of things - also i have a dfaughter who is nealry 18, does she need to be worried as well.
thanks - love n light to you all xx
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Posted By: Carol (Tenn)
Date Posted: Mar 15 2010 at 6:16am
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Wendy,
Breathe...you will be fine....and my doc did the same thing....
go to http://www.lbbc.org - www.lbbc.org
You will find a brochure there that you can download and take it with you today or just read it on the site. It a wonderful source to answer your questions...
I know you tumor was small but you also have TNBC and it is aggressive. You will probably be asked if you want to do chemo or just radiation. I would go for the whole bit. That way you know that you did all you could to keep from having a recurrence. The recurrence factor is the biggy with tn. And it's random, there's no criteria for whether you will have one or not.
There will others that are more knowledgeable than I, but I think on this we all agree.
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 |
Posted By: 123Donna
Date Posted: Mar 15 2010 at 6:47am
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Wendy, When I convert 25mm, I get 2.5 cm. If this is correct, I'd definitely talk to your doc about chemo. You may need to see if you can find a specialist who knows more about TNBC. http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf - http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf I don't know what it means for testing negative for the BRCA gene, but have a family history of breast/ovarian cancer. There could be other genes we're not aware of when you see a higher occurrence in certain families. The good news is your negative for the BRCA gene. Please let us know what your doctor recommends. ------------- 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: Carol (Tenn)
Date Posted: Mar 15 2010 at 6:51am
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Thanks Donna, I don't do metrics well.....but the advice is the same...Go For It!! ------------- 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 |
Posted By: Ranee
Date Posted: Apr 06 2010 at 6:14pm
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Hi,
My name is Ranee. I am 54 yrs old and found out January 12th I had a highly suspicious mass in my right breast. I am now post lumpectomy and lymph node dissection. Pathology has show two positive nodes-the sentinal and one other (20 were removed). Yesterday I received the information I have Triple Negative breast cancer. I was in shock yesterday--will never forget the doctor saying -prognosis poor-.
I work in the medical field and began searching the web about this and hysteria soon began to grow. Being told you have breast cancer puts you in your own little world. TNBC takes the air out of that world. Holy crap I am scared. I am numb one moment, tearful the next. I feel alone in this even though my support staff is in red alert. I see the onc. next week but until then (and probably even after then) I will be in total overwhelm. What can I do today to quiet the screaming voices in my mind that are saying you are going to die--soon!!! I am white, middle age....how did this happen???
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Posted By: Carol (Tenn)
Date Posted: Apr 06 2010 at 6:36pm
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Hello Ranee,
Welcome to our community of loving caring knowledgeable people.
First, you are not going to die soon. So relax...breathe deep...clear your mind of all unsettling thoughts and focus on your treatment.
Second, tell us how big your tumor was.
When is your appt with onc? In the resource section there is a list of question you can ask.
Also, tnbc is treatable. Chemo works best on tnbc followed by radiation.
There are some members here who are a lot better equipped to answer your questions. They do a lot of research and know a lot. I am not good at that. I feel my calling here is to add spiritual support to the mix.
You might want to move this post to the New Members forum or to the TNBC Talk forum. It might get read quicker.
If there is anything I can do to help you just let me know. I will have my 2nd year as a survivor on the 17th of June.
I am 68 years old and that is out of the norm as well.
TNBC is a random devil....but just remember, we are all in this together and we will beat it down.
You are with friends, you are not alone!! This is the place to vent, to cry, to laugh, to shout victory after victory.
Love and many 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 |
Posted By: trip2
Date Posted: Apr 09 2010 at 10:33am
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Hello Ranee and welcome to our forum.
Many of us are white, middle aged or even older.
We sure know that overwhelming feeling of being diagnosed, so many questions, thoughts running thru your mind. Many of us use mild sedatives and or anti-depressants which helps calm us down.
Try not to look ahead, you want to focus on one day or one hour at a time. Once you see your Oncologist and get a treatment plan laid out then things will fall into place.
We have several long time survivors who post on this site, many women survive this disease so don't let "poor prognosis" cause you to think you are doomed! TNBC responds very well to chemotherapy.
Also in the last few years they have been working hard to find treatments for us so we have to have hope that answers are just around the corner.
Come here and talk to us, we understand. Cry, Vent, ask questions. Check out our TNBC News/Resource section of the forum and also near the top is a Resource link. Click on that and a drop down menu may have some links you'll find helpful.
Post anytime and let us know how you are doing.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ranee
Date Posted: Apr 09 2010 at 5:22pm
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Hi Pam,
Thankyou for your words of encouragement. You are right; it seems like every waking moment is spent with this disease floating around in my head. The nights are the worst-I sleep with the tv on so my mind picks up that noise instead of what is roaming through my mind. I am so tired right now; my consultation the the onc is Monday and I've compiled a full page of questions. Some days I cope with the uncertainty OK but others (like today) I am emotional and raw.
Did you opt for mastectomy(s) before tx? I had a lumpectomy but am thinking I will request to go back to surgery for the full removal of both breasts. That in it's self is overwhelming. Then more recoop time...can you start chemo before wounds are completely healed? Panic city!
Someone told me this is happening because of karma.....that kicked me in the gut. Could that be true? Being on disabilty limits the finances so I don't do much in spending money, going for a drive (thinking, how long will I be able to witness nature's best?) or much else. I enjoy reading so I try to stay off the internet topic of TNCA, figuring I don't need to borrow scenarios.
I share a house with a girlfriend of mine who's boyfriend is on hospice. He too has cancer so it's all around me. I want to sleep but can't seem to do so as long as I'd like. I know Monday will take care of alot of my issues, but new ones will be put in place.
How was your treatment? Did you have any medical issues that affected the treatment you got? Any bumps in the road along the way?
For years I dealt with patients that faced the same issues, but a clinical state of mind is a much easier place to be. I am not thinking clinical about this and I hate it.
Help me gather the tools to cope Pam. I need help.
Thanks,
Ranee
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Posted By: Ranee
Date Posted: Apr 09 2010 at 5:40pm
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Hi Carol,
My tumor was 1.8cm Grade II, I don't know the stage.
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Posted By: trip2
Date Posted: Apr 09 2010 at 8:55pm
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Hi Ranee,
First of all I would like to suggest you get copies of your pathology report, any scan results, bloodwork, x-rays so that you can begin your own file at home. Sometimes it helps to look at these things, first to learn what is going on with our bodies and also some women have found questions they want to ask about say a scan or they could even make a mistake and give you the wrong result so always read the name.
Night time can be awful. I have taken a sleeping pill for years. I was diagnosed the first time at 56 and the second time I was 60. Having two diagnoses with alot of family history of cancer was the deciding factor to have a bilat the second time around. Soon after the surgery I learned I also had a brca 1 mutation which both of my daughters also have, one has been diagnosed and the other is 23 so being vigilent for now.
I would also suggest you see a Certified Genetic Counselor to see if you qualify for testing of the brca 1/2 mutations. In a recent study I posted in the TNBC News/Resource section it suggested all women with TNBC family history or not should be tested. http://www.facingourrisk.org - http://www.facingourrisk.org is a great website/forum explaining about brca 1/2.
You would need to be healed from your mastectomy should you choose to go that route. You could always do it after treatment too. Deciding on a mastectomy is an extremely difficult thing to think about, do your research and be sure as you can be. Would you also consider reconstruction? That also could be done after treatment.
You really have to be careful hearing some of the remarks people will make. Sometimes they just don't know what to say.
Go to the TNBC News/Resource section and check out all of the information. Also near the top is a link called Resources. Click on that and you'll get a drop down menu where you might find something to help you.
I'm glad you are going Monday to see your Onc. The waiting for things to happen or learn of results is such a very difficult time.
We all vary in our reponse to chemotherapy. Let us know after you speak with your Onc what they are suggesting and also consider a second opinion.
When you learn what they are suggesting we will help you as we've all been down that road. The thing to remember is we are all different so how one woman responds may not be the case for you. They give you good meds to help with side effects.
I have some great links for assistance and headwear so just give us a yell.
I had Adriamycin/Cytoxin the first time for 4 treatments then had 4 Taxol. The second time I had Taxotere x 6. Each of the meds seems to have their own issues.
If you go to http://www.chemocare.com - http://www.chemocare.com they have lots of info on chemo drugs, side effects, etc..
We're right here, remember that. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ranee
Date Posted: Apr 10 2010 at 12:41am
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thanks for the info. I will consider all and will be in touch with you after the consult. Thank you again for caring for me even though you don't know me. It's the purest form of service isn't it? He is so wise!!
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Posted By: Lillie
Date Posted: Apr 10 2010 at 10:42am
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Hello Ranee,
I am so sorry you are having to go through this waiting, worrying, wondering, frightening time. Pam has given you some wonderful and truthful information, so try to draw strength from that. I am white, 69 years old and certainly not in the category of women most likely to be triple negative, but I am. There are many of us on this site that fall into this category. I don't believe karma has anything to do with your breast cancer. You indicate that you put your trust in God. God and karma don't mix. Also, Pam is correct about the night time fears. Take something to aid you in sleeping. You need your rest. Please keep us informed as you progress with your treatment plan. YOU ARE NOT ALONE and WE LOVE YOU... Love in Christ, 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 |
Posted By: trip2
Date Posted: Apr 10 2010 at 11:14am
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Hi Ranee,
Thinking of you and hoping you'll have a busy week-end to pass the time. I would suggest when you post about your Onc consult to go to the Talk forum where more people will see your post. You'll get more response that way.
We are a family here, we care about you and will be here thru out your treatments. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: 123Donna
Date Posted: Apr 10 2010 at 12:46pm
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Hi Ranees and welcome. We've all experienced the same feelings you're going through right now. It can be overwhelming. Definitely ask the doctor to give you something to help you sleep. Sleeping problems is the one constant I've had in this journey. I can stay busy in the daytime to keep my mind from wandering, but night time is when all the terrifying thoughts return. I know part of the problem is the menopause brought on by the chemo, but knowing we have tnbc is the other. Please keep us posted. 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: EyesOTex
Date Posted: May 11 2010 at 7:10pm
| I, too, am sorry you're having all these issues. I second and third all of the above, and multiply by a zillionth all the love and hugs and hopes being sent your way. It's been a while since the last post, so I hope some things have been resolved or at least treated for you. much love to you, dana |
Posted By: 123Donna
Date Posted: May 11 2010 at 7:46pm
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Ranee, How are you doing? 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: cubby
Date Posted: May 25 2010 at 1:05pm
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Donna
I am doing quite well. My chemo is called ACT. I have had the first course the AC. Now I am going to be taking Taxol once a week for 12 weeks and I hope I am well and finished with treatment.
My 1st Taxol is being given to me tomorrow Wed 26,10.
Thank you so much for asking. I am slow to check my messages SORRY. I will also get the results of my second chest CT trest. I am hoping for good news.
Renee' ------------- 54yr Fem.Diag. 11/09 3.0cm IDC TNBC w/Second mass L/Breast.Mast. 12/09, 18 nodes neg. StageII, Grade II. Unknown 6.5 mass Left Lung |
Posted By: Janrr6
Date Posted: Jun 05 2010 at 3:47pm
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Hi Ranee. I am also new to this journey. I was DX on 01/30/2010 also at the age of 54. I have all the same feelings. Fear, disbelief and overwhelming shock at the TNBC. When I speak to other people with breast cancer, unless they have TN I don't think they really understand. I have also searched the web and found that I really need to stay away as all I come away with is more bad news and fear. I have now put my faith in my oncologist, radiologist and God. I will survive. My chemo hasn't been bad at all. Some side effects, but not too bad. I still think - how did this happen to me? I have no family history of breast cancer, I have had all my screenings done and just last July had a clear mammo. I found the lump myself and it was already 5.2 when removed. I also had 20 nodes removed with 2 pos. I too am middle aged, white and in otherwise excellent health. How does this sort of thing happen? I'll never know, but please try to wait until you see your oncologist. You will have all the answers then and feel more secure about your treatment and outcome. At this point, I am confident I will beat this. When I started, like you, I could only think that I was going to die soon. I wondered if I should stop at the funeral home and make the arrangements. Please know that I wish you strength and pray that you will get through. Hugs to you. Be strong. We're in this together. You are not alone. ------------- DX 01/30/2010, 54 yrs., lump. 02/12/10, 5.2 tumor, 2 pos of 20 lymph nodes, TNBC stage IIIA, grade 3, BRAC 1/2 neg. |
Posted By: Carol (Tenn)
Date Posted: Jun 06 2010 at 8:58am
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Welcome Jan... I'm happy you found this site. Yep, we are all in this together. I have to leave for church soon, so I don't have much time but may I suggest you post on Welcome New Members forum. You will get more responses there. I also, welcome you to the Spiritual Support thread. I will chat more later...have a good day..
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 |
Posted By: suzie
Date Posted: Jul 04 2010 at 10:41pm
| could someone contact me just been diagnosed and would love support |
Posted By: Allison
Date Posted: Jul 04 2010 at 11:39pm
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Suzie, Welcome to the site. I'm sure you are beside yourself with fear, grief and anger. We have all been there. I can tell you however that you have found a great place to ask questions and get support. What are your treatment plans? have you started yet? ------------- 9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08. |
Posted By: LauraT
Date Posted: Jul 04 2010 at 11:44pm
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Hi Suzie,
I recently joined the forum here, but I was diagnosed last October and just finished all treatment and surgeries. From what I've experienced so far on this site, there are so many wonderful people who are knowledgable and supportive.
I'm really sorry that you are in this boat, but please know that I am so willing to help you paddle! When I first learned of my TNBC diagnosis, it was hard and the amount of information and decisions to be made seemed overwhelming. Please let us know how we can help in answering questions. Know that I care and understand and will support you in any way I possibly can.
You're in my prayers,
Laura ------------- DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva |
Posted By: 123Donna
Date Posted: Jul 04 2010 at 11:45pm
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Hi Suzie,
I'm sorry to hear about your diagnosis. This is one club no one wants to join. However the people on this forum are wonderful and will be there for you. Can you tell us a little more about your diagnosis? Do you know the tumor size or what type of chemo? Please keep us posted and let us know how you're doing. 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: Carol (Tenn)
Date Posted: Jul 04 2010 at 11:51pm
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Hi Suzie,
Welcome to the best community on the net. You meet a great array of people here who are all going through the same things you are or have already gone through it.
Tell us all about your dx, what were you told about your tumor, has surgery and treatment been discussed yet?
As you can from my stats, I've already been through treatment the had a recurrence. I'm also older than the average.
So ask any questions you have and someone here will have answers for you. If I can in any way help you, just ask. We're here to support you in any way we can. We are also here to listen to you vent, when you feel the need. We're here to encourage you, share with you etc.
Hope to talk again soon.
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 |
Posted By: suzie
Date Posted: Jul 05 2010 at 2:26am
| well i am 61 and was suppose to have chemo but pulled out on friday as dont believe in all the chemicals going into the body will do radiotherapy though and it was in one node and all nodes were removed would love some email contacts so I can contact personally thanks |
Posted By: suzie
Date Posted: Jul 05 2010 at 2:33am
| also was 3cm tumour stage 2 lumpectomy and all nodes removed ......... just feel bewildered but spiritually strong .............. |
Posted By: Carol (Tenn)
Date Posted: Jul 05 2010 at 7:27am
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Suzie,
I know it's your decision to make. We will honor that decision. In my opinion, chemo is our only real chance to iliminate the cancer. It is standard, along with radiation. I had both, and still had a recurrence. I often wonder if I would still be here if I hadn't taken chemo at all.
No one likes the idea of putting those poisons into our systems but it's the lesser of two evils in my opinion. It's been said, "the lesser of two evils is still evil." But that is the nature of this beast.
But as I have said, these decisions are very personal and you are the one who has to feel confident in your choices.
There is a lot of into in the Resource section of this site.
There is also a great brochure that will describe tnbc in much detail and answer a lot of questions that are easy to understand. http://www.lbbc.org - www.lbbc.org
Also, there are others here that are much more qualified than I am about treatment etc. They do tons of research and are very knowledgable. Members such as Steve, Donna, Pam, Denise. I am certain others will come along as well.
I am with you all the way.
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 |
Posted By: trip2
Date Posted: Jul 05 2010 at 9:21am
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Hi Susie and welcome,
If you click on a member's name at the left of their post, there will be a drop down menu and one will say
"send private message".
Click on that and you can write privately to a member and I am sure anyone would respond. I hope you will also feel comfortable enough to post in our forum. We would love to help give support and answer questions.
We totally understand what this diagnosis feels like and how it turns your life upside down.
As Carol said, TNBC responds very well to chemo, better than some er+ breast cancer but we do
respect your feelings here.
I will send you a private message, best wishes
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: Jul 05 2010 at 10:08am
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Dear Suzie, Welcome to TNBC Foundation. I believe it is a wonderful site filled with marvelous folks. You are now in our family. I wish you did not have reason to join but we are glad you found us. You wrote "just feel bewildered" and that is totally understandable... I think it is extremely important that you meed with a Breast Medical Oncologist who can patiently explain TNBC to you. From what you have described your Stage is IIb. http://www.breastcancer.org/symptoms/diagnosis/staging.jsp - http://www.breastcancer.org/symptoms/diagnosis/staging.jsp From what you have described you had a 3 cm. tumor with one lymph node affected. from the link above
As Carol mentioned the standard treatment is for a woman with TNBC to have chemotherapy and then most often radiotherapy. I am not a doctor and will not give you medical advice but I believe you have chosen a dangerous path if you want to fight your cancer. You suggested that you would like to speak to us via email. I am sending you a PM with my email address.. Suzie, basically your cancer has spread from the original site and therefore maybe in your bloodstream as indicated by your positive lymph node. That is why the chemo is given so that it can travel throughout your body and kill the cancer. Radiation therapy targets a specific area around your breast and under your arm where your positive lymph node is......It doesn't do the systemic job that chemo would hopefully do. TNBC can be an aggressive cancer and the medical community's view is that it be battled aggresively i.e. surgery, chemo and radiation therapy. Suzie, you are 1000 per cent correct that chemo is poison. If the women here had a viable choice that worked I believe they would opt for that treatment and not do chemo. Unfortunately it is my understanding that a viable choice does not exist. Right now in situations like yours where you are Stage IIB you, in my unprofessional opinion are taking a huge risk, by foregoing chemo, that should be explained to you by a competent Breast Medical Oncologist (BMO) who understands TNBC. That is a job for a medical professional not me. I am happy to start an email back and forth and I will give you my phone number as well but you ideally need to have your 'bewilderment' addressed by a good oncologist. I believe that if you truly understand what you are up against without chemo you might reconsider your decision. It is is imperative that you have the conversation I am suggesting soon. It is not a workable plan to do radiation therapy now and then decide to do chemo e.g. a year from now. I apologize for writing so bluntly about your decision. What is also 1000 per cent clear is that the no chemo decision is yours to make, solely, and we will be here for you no matter what you decide. The other thing that is clear is that there are no guarantees with any of this. I genuinely wish you good luck no matter what treatment plan you decide and you shall be in my prayers. 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 |
Posted By: Carol (Tenn)
Date Posted: Jul 05 2010 at 10:30am
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Steve,
Thank you so much for validating my opinion. I sometimes hesitate to respond as strongly as I did in this case because I am not good at research and all. You, my dear friend are.
You said all I intended to say but in a much clearer and concise way.
Love you Steve, you are a blessing here on this site.
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 |
Posted By: TNBC Advocate Texas
Date Posted: Jul 05 2010 at 10:52am
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My mother was diagnosed with Stage 1, 1.3 cm, Grade 3, No sentinel node activity at Age 60, triple negative.
Local Arkansas oncologist recommended Mammosite radiation and no chemo. Reoccurrence to brain and lungs at age 62. Metastatic Breast Cancer treatment at University of Texas M.D. Anderson Cancer Center (Nellie B. Connally Breast Center). The medical oncologist spread out all chemo options over 9 month period along with full brain radiation. The metastatic TNBC changes DNA each time it spreads and becomes immune to the different chemos. I would highly recommend chemotherapy with the original diagnosis because of personal experience with TNBC. I would love to share Oncologist information with anyone looking for help. My love to all those affected by cancer. May GOD bless you, comfort you, "HEAL" you and fill you with peace and strength. His, Samantha (Bobbie's daughter) |
Posted By: trip2
Date Posted: Jul 05 2010 at 11:12am
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Samantha,
Thank you so much for sharing your mother's story. How is she doing? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: 123Donna
Date Posted: Jul 05 2010 at 12:06pm
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Suzie,
I understand how you feel. I hated the idea of chemo, every part of it. I respect your decision whatever you decide and will be here for you in this journey. I must tell you my friend's story so that you can make an informed decision. My best friend since 7th grade was dx a little over 2 years ago with TNBC Stage 0 DCIS, lobular. The SNB found 35 isolated cells in the lymph node. She had a mastectomy and no chemo. Now 26 months later she has mets to the liver. She regrets her decision terribly and wishes she would have done the chemo. She has 2 young children, 3 and 9. TNBC responds well to chemo. Sure it doesn't always work, but it's the only treatment available to us. Please see an oncologist who specializes in TNBC. I don't want to scare you but with this disease we have to be agressive in treatment. 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: Lillie
Date Posted: Jul 05 2010 at 12:15pm
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Dear Suzie,
I sent you a PM. I look forward to hearing from you. 61 is so young. I am 69 and I am still young at heart. Don't they call us the new 50's or something like that. You will see from my signature that my stage, grade, etc is almost identical to yours. I understand your hesitation and possibly fear of the unknown and I totally respect it. Love in Christ, 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 |
Posted By: Shelly Rae
Date Posted: Jul 05 2010 at 2:22pm
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Suzie, I hated the thought of Chemo, but with the help of family and great friends I got through it. I thought in my mind it would be much worse than it was. Mind you it was not a picnic in the park at all. I understand it works different for everyone, but for me it was very doable. I have a great support system around me that helped. I find it sad in a way that there is so many things to help cover up the effects of this harsh treatment. By doing this I sometimes wonder if it hinders finding a gentler treatment. On the other hand I was glad to not loose my cookies once while going through treatment. I hope this makes since. I have so much to live for, I will do what I have to to kick this bump in the road of life down flat. ------------- 4/09 age 47 Stage 3a, Gr 3,1 node micro ACx4 Tx4 Rads x 33, done Dec.1,2009 NED |
Posted By: Ranee
Date Posted: Jul 05 2010 at 4:09pm
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Hi Jan,
Thanks for your post. I'm going in for Taxol #2 tomorrow...if it's anything like #1 I'm scared. Saw my oncologist on Friday. Showed him some lumps I found at the surgery site. I thought they might be scar tissue and he agreed. But the lump in my stomach is unforgettable. I am finding a new relationship with God. Seems He's the one that's there when I want to talk=no matter what time it is. At last a sense of peace I can grab hold of. This path is lonely, scary and bumpy. I don't like it. I try each day to begin with a positive mind. I think right now it's working somewhat. I look forward to everyone's messages. They keep me going. thanks. Ranee ------------- Dx 1/10; Surg 3/10; 2.5cm tumor rt breast +2 lymph nodes. Lumpectomy w/dissection. Stage II Gr III |
Posted By: TNBC Advocate Texas
Date Posted: Jul 05 2010 at 6:09pm
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Ranee,
My thoughts and prayers are with you during this difficult and sometimes near unbearable journey. GOD is the only answer. GOD will never leave you nor forsake you. Philippians 4:6-7 (New International Version) 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 1 Thessalonians 5:17 (King James Version) 17 Pray without ceasing. James 1:6 (King James Version) 6 But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed. James 5:14 (New International Version) 14 Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. Please call on me any time to pray. You can send a request on forum or privately. I would be honoured to serve. GOD bless, Samantha |
Posted By: MammaVic
Date Posted: Jul 17 2010 at 11:16am
I was diagnosed with BC. Chose to have a bilateral simple mastectomy with immediate reconstruction. NOW they tell me I have TNBC and need very aggressive Chemo AC+T. I have already had the expanders put in place and they are VERY uncomfortable. (3 weeks post surgery) I'm wondering if I should have the expanders taken out before I start the Chemo. Have enough to think about without worrying about that right now. Don't know if they will continue with expansion while doing Chemo anyway, anyone been thru this or have any thoughts as to my best option at this point? Any and all info would be helpful, as I was really thinking about NOT doing Chemo at all, but after reading this site, I believe it would be my only Chance For Hope.  Thank you for your help and hope to hear from someone SOON ... Vicki G |
Posted By: CTB
Date Posted: Jul 17 2010 at 11:33am
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Suzie: Like you I was 61 when I was diagnosed with TNBC in 12/09. Like you I was adamant about not getting chemo. My Surgeon and Oncologist were blunt about the importance of taking chemo with TNBC but made it clear that the decision was mine. I did much independent research (I really was not on this site at that time) but I made the decsion to go with the chemo based on what I was reading and the advice of a dear physician friend who assured me it was the best choice with this type of cancer. I reluctantly decided to go forward with the chemo. I finshed all treatments just 2 weeks ago and turned 62 last week. As others have said it was no picnic but I manged to continue to work and maintain my life as normal as possible. I had a wig dyed to my color and styled like I usually wear and no one knew it was not my hair, unless I told them so. Now that I am finshed treatments I am starting to tell people what I have been through and all are amazed since they could not tell anything was going on with me. Bottom line is it is your choice but I am so glad I took the chemo and can look forward without regret knowing I did all i could do fight this off. Good luck to you as you move forward. ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: 123Donna
Date Posted: Jul 17 2010 at 11:40am
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Hello! There's a thread called welcome new members that you might want to post and introduce yourself. More people will see your post and respond.
What was the size of your tumor and did you have any nodes involved? With tnbc chemo is our only weapon. I agree about the expanders being uncomfortable. I had them while going thru chemo and had the fills usually the day before chemo. It was doable. Once I was done with chemo I was able to get the implant exchange. 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: Judy Britton
Date Posted: Jul 21 2010 at 10:18am
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Carol, I think we are the same age.....not in the usual demographic for this diagnosis. ??? Wish I had some answers......
I would really like to hear more about your experience. It has only been 6 weeks for me. I am seeing the Medical Oncologist tomorrow (07/22/2010). Have been told that I will have 6 months of chemo and 33 radiation treatments. What about recurrance? Was your brain involved?
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Posted By: Ranee
Date Posted: Jul 21 2010 at 2:20pm
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Hi Samantha,
Thankyou for your supporting words. In the end God never fails does he? I am comforted by your message. I had a chest ct done last week to follow a 3mm lesion in my left lower lung. No change from three months ago. They will still watch it. I wonder if the chemo has it in suspension and after my last treatment in two weeks it will take off. Nope, I refuse to look for trouble. Ah... here we go again. I have one more tx of Taxol. This has actually been more difficult than the A/C. I am waiting to see the Radiation Oncologist to see what he wants to do and am dying to go back to work. Hopefully I can return during the radiation and do ok. I pray for strength and decernment. I want my life back!! Thankyou again Samantha. ------------- Dx 1/10; Surg 3/10; 2.5cm tumor rt breast +2 lymph nodes. Lumpectomy w/dissection. Stage II Gr III |
Posted By: Carol (Tenn)
Date Posted: Jul 21 2010 at 2:21pm
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Dear Judy,
Yes, are different in that most of the time it's younger women who are faced with this disease.
There are several women our age on this forum but the majority are younger.
My treatment was the standard protocol for tnbc. I had 4 rounds of Andriamycin and Cytoxon, dose dense. They were infused every 2 weeks for 8 weeks. Then I had Taxotere with the same regimen.
Now some have Taxol, once a week for 12 weeks. But mine was dose dense, so therefore it was every 2 weeks just like the a/c. Taxotere seems to be less harsh on the neuropathy. Since I am a diabetic and already have neuropathy, my onc preferred Taxotere. I didn't have to much trouble with it...just seemed like I was walking on golf balls for awhile. It went away after treatment. I did have some trouble with my fingernails and toenails. They were brittle and eventually came off toes, not fingers. My advice would be to keep them cut short so you don't snag them on anything.
I also had thrush but there are mouth washes to use that will help that situation.
Now these are my experiences and may not match your at all. Just something to be aware of so if it happens you won't be taken unaware.
But all in all Judy, it's doable....very doable....Years ago it was more monstrous than it is now. I remembered hearing the horror stories. It's much better now. A lot of women go to work through their treatment. And that it great. Helps keep your mind off of you!
My craniotomy was not a met. It showed up as a "hot spot" on my brain scan and bone scan. It was cause for concern due to my dx of b/c. My neuro-oncologist thought is was a met. But thankfully he was wrong. It was a hemangioma, which is a cluster of blood vessels. They were removed and he put my head back together with screws and titanium. Now when someone asks if I have a screw loose, I check before I answer...haha
I did have a recurrence exactly one year after dx. It came back on the incision. My surgeon took it out tested it...positive results...then went back in to try to get clear margins. Which he did.
I found another lump a couple of months ago, we watched it for awhile and then decided to have peace of mind and take it out, which we did this morning. He thought it wasn't anything to worry about. We will see when the results come back but I feel good about the outcome.
I know you didn't need me to write a book. But it looks like I have. Sorry.
My best wishes and prayers for you as you start your journey. If you'd like to email me please do.
mailto:happycamper@beasleywireless.net - happycamper@beasleywireless.net
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 |
Posted By: TNBC_in_NS
Date Posted: Jul 21 2010 at 3:32pm
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Carol:
I hope you are feeling ok after having your biopsy done!!
Sending love and prayers your way! Take care my dear friend and have a restful evening.
Your sister on the journey, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: susanbrooks
Date Posted: Jul 22 2010 at 10:00am
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Hi - I am new here. I had BRCA1 and 2 testing done and it came back negative. I was diagnosed in December of 2008. I had a bilateral done in January of 2009 - clear margins and sentinel node was clear - but it was TN stage 1 grade 3. I had chemo until June of 2009. This last month I went back for my 18 month check up and they found two nodules - 1.3 and 1.9 cm - one in each lung. The biopsy says it is metastatic triple negative. We are hoping to get into the trial for the PARP inhibitor drug that has been so successful. I am looking for a local support group in my area - Jacksonville, FL - does anyone know of one specifically for TN? |
Posted By: dmwolf
Date Posted: Jul 22 2010 at 11:00am
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Susan, I'm so sorry about the nodules. You must be reeling. Good luck with your treatments, and know that we are here to support you every step of the way. 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: abcmom
Date Posted: Jul 22 2010 at 11:14am
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Praying for you as I do for all of us here. ------------- Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice) Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11 |
Posted By: trip2
Date Posted: Jul 22 2010 at 7:43pm
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Hi Susan and welcome to our community,
I am so very sorry you have to deal with this again, my heart goes out to you.
I would suggest you try a post with your question about TN support groups in the "Talk" section where more might see your post.
You might also check out our "Recurrence/Metastasis" section where you will find others who have had TN come back.
Also the Resource section has alot of information. We have http://www.emergingmed.com/networks/tnbcf/ - http://www.emergingmed.com/networks/tnbcf/
which helps you find a trial matching your situation. Also http://www.breastcancertrials.org - http://www.breastcancertrials.org is a good place.
I hope you are able to get in a Parp trial, please keep us updated on things. Look forward to hearing from you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jul 22 2010 at 7:51pm
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Carol,
I just read that you had a biopsy, have you learned anything yet?
Honey I tell ya the waiting is awful as you know, sending extra strength your way.
Let us know.. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Carol (Tenn)
Date Posted: Jul 22 2010 at 8:28pm
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Hi Pam,
The surgeon told my husband that he didn't think it was anything to be concerned about. I don't think he would have said that if he didn't think it was so. He sure didn't commit himself when I had the last recurrence. So I feel assured I'm still dancing with NED! I bet he wishes I would sit down and stay off his feet...
------------- 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 |
Posted By: trip2
Date Posted: Jul 23 2010 at 11:09am
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Keep on dancing sweetie, makes for happy people! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lorene
Date Posted: Jul 27 2010 at 11:45am
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Pam,
Switching between the various posts, I think I may have left messages for you on the wrong one. Maybe I'll eventually learn where I am relative to who I'm addressing. Hope you're having a good day!
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: lavadava
Date Posted: Aug 26 2010 at 2:35pm
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Im assuming Im too late for this! Shucks! ------------- Age - 48 Dx TNBC, stage IIb, high grade, high proliferation rate Left Tumor - 8cm Taxotere,A/C,- 5/07 - 9/07 Partial Mastectomy - 9/07 Rads - 1/08 - 2/08 Reconstruct - 1/09 |
Posted By: briestarr
Date Posted: Aug 28 2010 at 11:12pm
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Okay... I have a question myself. On return of the cancer, does a triple negative patient go through Chemo again? and radiation again? Or is that out of the question?
Brie ------------- DX TNBC Feb 2010 age 48 Lumpectomy 2cm 6 nodes removed, all clear Chemo A/C and Taxol 8 sessions Radiation 33x BRCA 1 and 2 negative |
Posted By: 123Donna
Date Posted: Aug 28 2010 at 11:28pm
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Brie, If there are mets, it is usually treated with chemo and possibly radiation. ------------- 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: briestarr
Date Posted: Aug 28 2010 at 11:32pm
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Mets?? dumb question. ------------- DX TNBC Feb 2010 age 48 Lumpectomy 2cm 6 nodes removed, all clear Chemo A/C and Taxol 8 sessions Radiation 33x BRCA 1 and 2 negative |
Posted By: SagePatientAdvocates
Date Posted: Aug 29 2010 at 12:04am
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Brie, there are no dumb questions here...just an awful disease. mets=metastatic disease=spread of the cancer... 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 |
Posted By: briestarr
Date Posted: Aug 29 2010 at 12:18am
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so, if the cancer comes back in other places in the body, that is when they use the chemo again??
wonder if it is just in the breast? ------------- DX TNBC Feb 2010 age 48 Lumpectomy 2cm 6 nodes removed, all clear Chemo A/C and Taxol 8 sessions Radiation 33x BRCA 1 and 2 negative |
Posted By: Lillie
Date Posted: Aug 29 2010 at 2:14pm
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Dear Brie,
If there is a recurrence in the breast (especially if 1st surgery was a lumpectomy) there can be more surgery (possibily mastectomy or double mastectomy), also, radiation is used in some instances if the 1st surgery was a (mastectomy). Sometimes, surgery, chemo and radiation if recurrence is in the breast. It depends on the individual situation. 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 |
Posted By: 123Donna
Date Posted: Aug 29 2010 at 2:28pm
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Brie, Yes there are no dumb questions. It took me a while to understand all the abbreviations when I joined. There are 2 types of recurrences we worry about, local and distant. If it's local, it's associated with the first tumor. Maybe it came back in the same breast area as the original tumor. This usually happens when there are cancer stem cells that remain and grow again. The other recurrence we fear is distal to another organ. They say if it spreads it is usually to the liver, lung, bone or brain. There are a few people on this site that have it spread to the skin also. Besides spreading through the lymphatic system, my onc told me that tnbc has a higher chance of spreading through the vascular (blood) system than other bc. 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 |
Posted By: trip2
Date Posted: Aug 29 2010 at 3:44pm
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Brie, Steve and Donna beat me to it, no dumb questions in this forum! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: ksassin
Date Posted: Aug 30 2010 at 2:30pm
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I was diagnosed Jan 31 2008 stage 2/ 1.6cm left breast, chemo Paxitaxal 3 mos then FEC 3 mos then left breast mast. Surgery on 8/08/2008. No lymph involvement so no radiation needed. I was moving on until Nov 2009, got cough went to dr. took chest x-ray sent be back to MD Anderson. They did lung biospy decided it had spread from my original Cancer. So back in treatment was taking Ixempra & Xeloda until I broke my leg was off chemo for 6 wks, Chemo stopped working. Changed me to Gemzar & Carboplatin. Those have been extremely hard on me cells, I have been in the hospital most weekends getting blood & platelets. My last chemo on 7/22/10 none since because my platelets just keep dropping to danderous levels. Now I am see a Hemotologist. I am pretty scared myself> Not to sound negative but most suriviors I hear about have only been out less than a year, and I know how well that worked out for me. I live in Kingwood Tx (north of Houston) and haven't been able to find many people with or who even know what TNBC is. My personal email is mailto:ksassin123@yahoo.com - ksassin123@yahoo.com . Thanks for listening :) |
Posted By: Lillie
Date Posted: Aug 30 2010 at 3:12pm
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Dear Ksassin,
I am so sorry to hear about all your troubles. Most of us never heard of triple negative until we had it. We are definitely in a minority of breast cancer cases (approx. 15%). How did you break your leg? Did you have any lung problems prior to January 2008? I am sorry you are having so much trouble with gemzar & carboplatin. I'm sure someone who can better identify with your situation will be along to post shortly. Anyway, welcome to the site and we are here for each other. You can ask questions, vent, whatever. We are here for you. 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 |
Posted By: MammaVic
Date Posted: Aug 31 2010 at 2:59am
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Hi Donna: Sorry it took so long to get back on here, been reading, but not responding lately. Just had my 3rd round of Chemo yesterday. I'm not sure HOW anyone works while going thru this ... I know I couldn't have done my job, anyway, had a couple more questions ... about how long after your last chemo treatment before you were feeling "normal" again? The expanders are getting Better!! but still Uncomfortable. You seem to have a great deal of knowledge about this ... below is my full diagnosis, next week I'm going to start asking a lot more questions to my oncologist, but in the meantime, maybe you could shed a little light on some things that they didn't make very clear to me, (the microscopic description is VERY long) would be a great help ... God bless all on this site, it's a battle worth fighting, there is no doubt about that, but just knowing there are others out there and you are NOT ALONE is a great comfort. Hope to hear from you soon ... Vicki __________________________________________________________________________________________ Negative in two sentinal lymph nodes, 2.7 cm tumor in left breast, Grade 3, stage IIB, Margins free of tumor; tumor is 0.1 cm from closest anterior margin. (Officially tumor classified as: pT2, pN2mi and pMX stage IIB)  6/10 Bilateral Simple Mastectomy w/immediate expander reconstruction, Chemo started 8/10, ACx4 and taxol x4 treatments every other week. Also says: One intraparenchymal lymph node 1.0 mm was identified and it is positive for metastatic carcinoma ... Not EXACTLY sure what this means either!! |
Posted By: 123Donna
Date Posted: Aug 31 2010 at 8:13am
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Vicki, Hi! It took several weeks after my last chemo before I began feeling better. I don't know if I've reached normal yet, but feeling closer all the time. I started walking and at first, I could barely make a lap. Slowly each day got better. It was probably several months before I felt closer to my old self. Aren't those expanders uncomfortable? You'll feel so relieved when you can get the replacements. Here's what I found for you. I don't know if this answers your question. I'd definitely ask your onc or surgeon to explain the path report to you. http://www.everydayhealth.com/cancer/breast-cancer/surgical-treatments-for-breast-cancer.aspx?p=6 - http://www.everydayhealth.com/cancer/breast-cancer/surgical-treatments-for-breast-cancer.aspx?p=6 http://findarticles.com/p/articles/mi_6802/is_4_15/ai_n28132751/ - http://findarticles.com/p/articles/mi_6802/is_4_15/ai_n28132751/ http://www.answers.com/topic/intraparenchymal - http://www.answers.com/topic/intraparenchymal http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1276638/ - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1276638/ http://www.answers.com/topic/intraparenchymal - ------------- 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: Aug 31 2010 at 12:26pm
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Hi MammaVic, absolutely a battle worth fighting, best wishes with all that you are going thru... ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Carol (Tenn)
Date Posted: Aug 31 2010 at 1:16pm
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Brie, I had a recurrence one year after my original dx. It came back in the same area as my primary tumor so therefore it isn't considered a met. My onc said I had taken the strongest and dose dense treatment available so with my recurrence I had surgery to make sure I had clear margins once the recurring tumor was removed for biopsy. No more chemo unless I do develope mets in the future. So far so good. Thank you, Jesus.
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 |
Posted By: hdeall
Date Posted: Sep 06 2010 at 9:09am
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i have a question that i need to ask as i get further into treatment that we are hoping is working but with our cancer- who knows. do we have any ideas on timelines for tn women? how long is a longtime member in the group? when this cancer comes back do we have members who have had it for 5 years? just trying to get a picture and get my things in order. thanks. ------------- 54 yrs, TN, Brca+, Stage 1-right side only in Nov 08, BiLateral mast. immediate reconstruction Jan 09, Chemo, Oopherectomy Dec 09, Now bi-lat lymph nodes-Mar 10,Stage IV. BiLat lymph surgery Apr10. |
Posted By: SagePatientAdvocates
Date Posted: Sep 06 2010 at 9:58am
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Dear hdeall, I am afraid there is no precision to any of this but a rough rule of thumb I have hard mentioned by researchers/oncologists is that survival past 3-5 years is considered significant. I know that is a wide range but I listened as two oncologists discussed this a few years ago at a conference. A woman posted yesterday that her first cancer was in 1994 and now it is back. My aunt was dx 40 years ago and now it is back. A dear friend on the board was dx 20 years ago with 22+ lymph nodes and she is NED and healthy. I am sorry, but again there is no precision in all of this..Just a general feeling, and then exceptions at times. What I have been told many times is that the survival rates for women with TNBC who make it past five years can be better than women with other types of breast cancer and also that sometimes TNBC is very sensitive to chemotherapy and alas, sometimes it is not. There has been an ongoing post called "six year survivor"...I hope you will find it inspiring. My daughter is now 6 years NED as are many others. You may have posted this information before, but I have been unable to find it...sorry about that.. but after your surgery in April what treatment are you on? I see that you are BRCA+. Has your oncologist suggested a parp inhibitor? good luck to you.. in your corner, 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 |
Posted By: hdeall
Date Posted: Sep 06 2010 at 10:03am
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i'm currently in the bi-par study- almost done and then we can see it's success-hopefully.
on the survival in years question- i was just wondering...been concentrating on celebrating every day since my cancer recurred in less than a year after the first round of chemo. it's still in the breast/lymph area so we are more hopeful. was just trying to grasp the limits based on our facts- since that's all we have.
thanks. ------------- 54 yrs, TN, Brca+, Stage 1-right side only in Nov 08, BiLateral mast. immediate reconstruction Jan 09, Chemo, Oopherectomy Dec 09, Now bi-lat lymph nodes-Mar 10,Stage IV. BiLat lymph surgery Apr10. |
Posted By: SagePatientAdvocates
Date Posted: Sep 06 2010 at 10:28am
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ok thanks I understand.. my suggestion would be to try to take this day by day and try to find the "beauty in each day"...and from what you wrote you seem to be "celebrating each day" and I think that is wonderful. At the same time I feel, with your oncologist's guidance, you need to remain vigilant. my daughter was told to actively pursue surveillance..first every 3 months, then every six and now every year...we feel that is important, others disagree.. one of the problems with all this is that many women would like "statistics" about this so that they can get their arms around what "complete recovery" looks like. Statistics are statistics and you are you so it makes it very difficult. I know the above is unhelpful..sorry about that, hdeall..I just feel it is hard to answer your question as it specifically pertains to you...if generalizations are helpful than the 3-5 year survival range seems to be significant. Perhaps, hopefully, your oncologist can do a better job than my inept explanation. I hope so and please share it with us. I understand what you are trying to do.."grasp the limits, based on our facts" and again, I am afraid, there are no studies specific to what you are seeking to know. No precision to this awful disease. Just please keep fighting and trying your best and hopefully the time will take care of itself as the years go by. 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 |
Posted By: Lora
Date Posted: Sep 08 2010 at 12:13am
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Hi Cubby;
Wow, very similar stories. I was diagnosed with invasive ductal carcinoma, 5cm" tumor, triple negative. Because of the size, I needed chemo first. Followed protocol and did A/C and Taxol. Then after those 10 rounds of chemo, I chose to have a double mastectomy. Followed by 37 days of radiation. Here's where it's important and I want you to be aware. Make sure your doctors are communicating with each other. I mentioned in passing to my oncologist that the surgeon/pathology during surgery found some suspicious cells still remaining in the area of the tumor. She had not read my report. She grabbed the file and had my tissue sent to Arizona for a metabolic study. They found that the chemo protocol for my cells did not respond very well to the drugs. They did find that those cells responded significantly well to a group of drugs called Platinum drugs. Carboplatin was one. It is actually used for Ovarian Cancer. So I decided to be proactive and did 4 rounds of this chemo. She strongly recommended it. I'm not saying that this is what you need.. I'm saying, you need to stay on top of things and don't assume that your doctors are talking to each other. Provide more information than less. They see a lot of patients. Since my treatment is atypical, they really can't give me an exact prognosis. Yes, it's scary, but the key things to remember... You are in God's hands always, no matter what. He showed himself to me and intervened so many times, I don't have time here to mention. Suffice it to say, God is good and he is fighting right there along side you. I'm on anti-depressants and anti-anxiety drugs as well. I had been for 5 years prior. Had a nervous breakdown after my second child. No one has been able to explain it. I'm doing much better now. It's important that you manage this, since stress if not good for you. My husband was the opposite. He didn't want to talk about it and he was not that affectionate throughout. We've had some problems because of that. You are not alone in all that you are experiencing. I go in for my reconstructive surgery in 2 weeks. I've had a PET scan and Bone scan earlier in the year right after treatment, and both were clear. God willing, they will continue that way. When I got a negative thought or heard one, I would immediately go to God and ask for his shield to keep me strong AND positive. I feel like it's Satan just spewing lies at us. Don't let him. Ask for God to intervene. God gave me so much peace during so many nights that I felt so alone, He would just fill me with peace. Sorry this is so long... but we have such similar experiences... I so wanted you to have this information, encouragement and support. It's fine to educate yourself and for your husband to do the same. But don't go on every website and obsessing. It does no one any good and it doesn't change anything. God bless. Lora |
Posted By: Carol (Tenn)
Date Posted: Sep 08 2010 at 7:37am
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Dear Lora,
What a wonderful post to Cubby. It's so full of information and encouragement. I applaud you.
I would like to invite you to share your faith on the Spiritual Support thread. It's always encouraging to hear others speak of their faith in God.
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 |
Posted By: Carol (Tenn)
Date Posted: Sep 08 2010 at 7:44am
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Dear hdeall,
There are several long term survivors here....Lillie is 4 yrs and going strong...and I know there are more but my little brain won't let me remember them. I'm sure they will respond shortly. ------------- 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 |
Posted By: 123Donna
Date Posted: Sep 08 2010 at 8:00am
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Carol, Kirby and Rena are long term survivors. ------------- 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: Carol (Tenn)
Date Posted: Sep 08 2010 at 9:17am
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Thanks Donna,
Maybe some others will chime in...  ------------- 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 |
Posted By: Lora
Date Posted: Sep 08 2010 at 10:29am
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Hi there;
I agree with the others. if need be, take a sleeping pill. You need your sleep. I listened to Bernie Siegel on my iPod. He would do meditations for various things, like during chemo, etc. Your faith is going to be the most important thing to you now. Nighttime is hard, but that's when God came out fighting for me. I would just fall at his feet and He just filled me with peace. it's something that is difficult to explain. Make sure your doctors are communicating well with each too. I had a 5 cm" tumor, stage 3b, 7+ nodes. It sucks. But I did everything I could and now am just on a wait and see basis. I did chemo, bi-lateral mastectomy, 37 day of radiation. In two week, I head to the hospital to complete my reconstruction with a DIEP tissue flap. I have a 7 year old and 5 year old... my 5 year old has Down Syndrome. It's difficult to explain, but at some point, you realize that worrying is not going to help your situation. In fact, it will potentially make it worse. I've educated myself and have changed my lifestyle quite a bit. I cut out caffeine, alcohol and trying to lose some weight. But, my dr said stress is really important to manage. I'm on some anti-anxiety Rx that do help. Plus, I stay busy. I still stay informed about TNBC to see what research is going on. But, I try not to focus and think about it too much. I also pay close attention to my body and how I am feeling. Stay strong. God is right there alongside you, fighting with you. Whenever I got scared, I'd yell out, "that's a lie" "I'm going to fight"... things like that. it helped me. Lora |
Posted By: Lora
Date Posted: Sep 08 2010 at 10:55am
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Hi Carol;
How do I get on that thread? I can't find it. |
Posted By: Carol (Tenn)
Date Posted: Sep 08 2010 at 11:39am
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See at the bottom of this screen....FORUM JUMP....Clk there and then clk on Support Groups....then scroll down and clk on Spiritual Support...and there it is... ------------- 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 |
Posted By: briestarr
Date Posted: Sep 09 2010 at 1:11am
 Hello Ladies..
Well, I had my 5th radiation treatment today... out of 33! Got a long way to go... but I have come along way!! I am a little tired today. I want to forget I am suppose to be tired, so I don't feel this way... that isn't working. My dog has more energy than I do! and he is a pug!
I did have a little chat with my radiation tech today while they were taking extra pictures after radiation. I asked her, "how do I know this is working?" Tough question I guess. She referred me to talk to my doctor. I still haven't met anyone that is triple negative yet here in Reno. But, I am sure there is.
I am keeping my mind busy by planning my mom's 70th Birthday... and my grandma will be 100 this month! I hope I make it to at least 50!!
I just want to know more... and I think I have read everything there is on triple negative.. but, still don't feel knowledgable on the subject. I am just going to have faith and try to relax...
I ate steak tonight, and it didn't settle well... maybe I should stay away from beef...
Brie  ------------- DX TNBC Feb 2010 age 48 Lumpectomy 2cm 6 nodes removed, all clear Chemo A/C and Taxol 8 sessions Radiation 33x BRCA 1 and 2 negative |
Posted By: TNBC_in_NS
Date Posted: Sep 09 2010 at 7:46am
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Lora:
Life does not seem to be fair at times does it? We wonder why, but really we should be saying "what is it that Jesus is teaching me at this moment in my life? "What is Jesus teaching others in my life at this moment?" That is what it is all about and we will survive this horrible disease. Worry is not good for us at any time, for if we trust in the Lord, who can be against us?
Brie:
Be gentle with yourself at this time in your treatment. That is so important. Keep your energy for the uphill climb to the top of the mountain because that is how it will feel when you are done treatments. As for the beef, I stopped all red meat and have very little now in my diet. Pork was my favorite meat, but now I try not to eat it but when my daughter makes a roast or chops, it is difficult to say no! Eat what you can and begin making changes in small ways until you are finished treatments. Keep your strength up!
A blessed birthday wish goes out to your mom and grandmother! What inspirations they are for you... Enjoy! Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: TNBC_in_NS
Date Posted: Sep 09 2010 at 7:49am
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Lora:
Bernie Segal's book, Love, Laughter and Medicine is what got me through my first bout in 1989! He is marvelous and puts things in perspective for us and enriches our lives for his wisdom is profound. I am sure he has a hotline to the Great One! Bless you & yours, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: LynnBaker
Date Posted: Sep 13 2010 at 12:21am
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Hello!!! My name is Lynn Baker, 69, Information Technology professional. I've battled TNBC for the past two years 3 months sincemy original diagnosis. I just want someone to talk to although I have three cousins who also had breast cancer but they have all recovered. I'm currently taking 10 mg Hydrocodone & 10 neurontin,(gababentin) 4 times a day to manage the pain. I'm also on a morphine pump 10 ? 4x per hour. I take phenergan or zofran to combat the nausea although I've been extremely fortunate and haven't had ANY vomiting since beginn ing chemo treatment in July 08. I've recently been handed a six month death sentence but have appealed my sentence to a higher power, namely Jesus, the Great Physician. I'm experiencing swallowing difficulties and wanted to know if this is typical for TNBC that has metastasized to the lymph nodes at the base of my throat. It has not metastasized outside the lymph system. I thank God for that. Pls someone talk to me about this. I do have a tremendous support team but they don't understand dealing with the symptoms. I'm also taking 30 750 mg shark cartilage daily because an acquaintance in this city recovered from an inoperable brain tumor by particpating in a clinical trial in Atlanta, GA. The clinical trial consisted of shark cartilage in massive doses daily which caused the tumor to decrease in size. That was 16 years ago. Initially he was told he might live 4-6 months. 
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Posted By: abcmom
Date Posted: Sep 13 2010 at 9:01am
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Welcome. I am not sure about the swallowing because of nodes, but I am sure someone will be along soon who can help you. What are your stats? ------------- Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice) Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11 |
Posted By: dmwolf
Date Posted: Sep 13 2010 at 11:29am
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Hi, Lynn. Welcome to our community. Congratulations for maintaining your spirits while walking around with this beast on your shoulders for more than two years. Very inspiring. Congratulations also for the cancer staying in your nodes where they can't do much harm. That is rare for TNBC that has spread. I don't know much about swallowing difficulties and neck nodes, but can imagine that having swollen nodes near the base of your tongue or pressing on a nerve could do exactly that. Might they be able to irradiate the node causing the problem? That might really help. The other thing you might want to check for if you haven't already is a brain MRI. I know there is a place in the brain, I think low down somewhere around the cerebellum, that also contributes to swallowing. If by chance (hopefully not, of course) you had a small tumor there, they could zap it with gamma knife which should clear up the problem. Gamma knife is great, by all accounts. Why would your docs be giving you six months if all you have is lymph node mets? Lymph node mets shouldn't interfere with any vital bodily function, right? That sounds totally wrong to me. For that matter, even if you did have something that *might* get you in six months, nobody knows what will happen to any individual. Tons of people outlive their 'expiration date' by many years. There are lots of women on the Inspire website for women with advanced breast cancer who have had that exact experience. Anyways, I'm blathering. I just wanted to say hello and welcome and of course that we are here with you to help and care and just listen no matter what happens. 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: Carol (Tenn)
Date Posted: Sep 13 2010 at 11:42am
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Welcome Lynn (fellow Tennessean where is Georgetown)
I'm with Denise all the way...In fact in irritates me to no end why anyone would want to give you a time line. I'm two years out and had a recurrence and I'm not planning on going anywhere any time soon. And when that happens it will be God's decision, not anyone else's.
I hope you will visit the Spiritual Support thread.
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 |