SURVIVAL ODDS IMPROVED AFTER 2 TO 3 YEARS MARK???
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Topic: SURVIVAL ODDS IMPROVED AFTER 2 TO 3 YEARS MARK???
Posted By: buckeye
Subject: SURVIVAL ODDS IMPROVED AFTER 2 TO 3 YEARS MARK???
Date Posted: Feb 25 2009 at 2:56am
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I started this on another discussion - sorry new to the forum and don't really know how it all works, but my question to all of those of us blessed with the tnbc - anyone else been told that after we reach the year 2 and 3 marks our odds of survival are the same as all other types of breast cancer. Am I the only one hearing this from my onc and surgeon becaue I really had a very rough time with chemo and 2 surgeries so do they want to placate me - please repsond sometimes I feel like I am going crazy with all the information I hear or the stuff I think I don't hear
thanks ------------- dx 11/05 IIC GRADE 3 4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
Replies:
Posted By: Joan2844
Date Posted: Feb 25 2009 at 5:15am
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Hi Buckeye.... Your oncologist has the information correct. It is a "glass half full, half empty" situation, though. Trip-neg cancer has a different pattern of recurrence -- it is a more aggressive cancer that usually comes back within 3 years. After the three years, the pattern of recurrence "rapidly declines" in comparison to other cancers. http://%20clincancerres.aacrjournals.org/cgi/content/abstract/13/15/4429 - This was found by one researcher who studied 180/1600 breast cancer patients (180 of the 1600 were trip-neg) . Other studies also exist. So... it is good news. That is the "glass half full" part. The "half empty part" is that this is a tough cancer to beat -- it is sneaky and it does NOT play by the rules. It is more likely to come back within those first three years. You cannot turn your back on it, so to speak. Doctors don't know enough about this cancer, but they are studying it more and more. That is good news, and good reason to search for doctors who are up on research in this field of cancer. So.... be vigilant and aggressive with your treatment. Our cancer does respond well to chemotherapy. Some others do not. Good news for us. Get second opinions, decide on a treatment plan, do it to the best of your ability, and eat/exercise well. God willing, we'll be chatting three years from now, cancer free!  Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: Joan2844
Date Posted: Feb 25 2009 at 5:19am
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Hey! I just took a closer look @ your profile -- you've passed the three year mark!!!!! You go girl!! ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: buckeye
Date Posted: Feb 25 2009 at 6:55am
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Joan - yes I have but still see my oncologist every three months and my surgeon every six so the worry is still there, through every mri, every ct scan, plus I developed blood clots in my leg and lung during chemo and was on coumadin for 6 months back in 06 (the year of chemo) and I just had a setback with another blood clot in my leg (same leg) so it seems like it never ends. ------------- dx 11/05 IIC GRADE 3 4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
Posted By: cduvall1
Date Posted: Feb 25 2009 at 7:39am
Here's something else that may never end. You are a message of hope to those of us who are new to TNBC and hoping we too will pass the 3 year mark. Please continue to post as a survivor. By doing this, others can keep their hopes high.  Carol from sunny Palm Desert, CA. I'm not actually from Palm Desert...only here for 5 weeks of radiation. My home is in sunny Blythe, CA.------------- Carol dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09 |
Posted By: Nancy
Date Posted: Feb 25 2009 at 8:04am
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Joan,
Is that a link to an article or just a quote from it? Nothing comes up, and if you can get the link in a post, then I will post it in the news forum where it won't get "lost".
Thanks,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Joan2844
Date Posted: Feb 25 2009 at 9:51am
Here is http://www.thecancerblog.com/2007/08/26/recurrence-patterns-different-for-women-with-triple-negative-bre/ - a better link to the article I described.... it is from the cancerblog, and is written in "English." The first link was written for doctors!  ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: Nancy
Date Posted: Feb 25 2009 at 10:38am
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Joan,
I just posted the link in the news forum, and that way it will not get "lost". Thank you very much.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Bagle
Date Posted: Feb 25 2009 at 11:13am
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Carol from sunny Palm Desert, I too have invasive metaplastic, with probable lung mets. We are waiting for results from biopsy done yesterday. Metaplastic is such a rare dx so I was tickled to read your note(not that you have ca of course, but MC). Trip neg is also rare but I am trying to educate my docs. They just look at me with 'that look' and say 'I know about that' and all the time they don't really know, Rae from the snowy San Bernardino mts ------------- Tripneg RBC Metaplastic 2/08 R Mast.2/08 reconst. 4/08 6wks rad.12/08 CT/PET lung lesions.Waiting.. |
Posted By: walk4cure
Date Posted: Feb 26 2009 at 6:15pm
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Buckeye, I am a 6 year tnbc survivor. (March 2003). I go through my phases of worry, but try to stay on the positive side and keep living...  ------------- Mary-CA TNBC 3/2003, Rt Mast,16node-neg,Stage I,Grade III, BRCA-I&II neg,Chemo ACTx16,Taxol 6 txs,No rads, Reconstruct5/07, Latissimus Muscle. 12/2010-Lt Mast. ER/PR+ HER2-GradeI,Stage? Path-pending |
Posted By: Nancy
Date Posted: Feb 26 2009 at 6:52pm
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Dear Mary,
We are so glad that you have joined!!
 Please tell us more Six years is just absolutely wonderful!! You say that you had 16 chemo treatments. Was that 16 weeks? It is my daughter Lori who was dx with TNBC June, 2007. She will be 47 in April. Where did you receive your treatments? Lori had surgery at Magee Women's in Pittsburgh and her chemo and rads here in Altoona, Pa.
Hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Suzanne
Date Posted: Feb 26 2009 at 8:03pm
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Since the posted article states, "...risk of distant recurrence peaked at 3 years then rapidly declined", this sounds to me as though we need to be extra vigilant and wary at the three-year mark. After that, we can start to breathe a little easier. And here I was glad to reach the two-year mark in January! I guess I should put off my happiness until I'm well past three years.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: CarynRose
Date Posted: Feb 27 2009 at 2:06am
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Breathe easier at 4.... my mets were found then. ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Joan2844
Date Posted: Feb 27 2009 at 10:34am
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Ladies, I'll be darned if I'm going to wait until the "three year mark" to start "enjoying" my life! I have had trip-neg two times within the last three years.... but I make a point to FIND ways to BE HAPPY! I don't want to eventually reach my deathbed (which all of us will do, cancer or not) and realize that I did great job of worrying and being bitter. I want to look back and remember happy times. So, in spite of this disease hitting me twice, I still make an EFFORT to look for something good in every day. I hope that each of you will be able to, also.... whether at the 2 year "mark," or beyond. We are each blessed. Aspects of our lives may really stink, but we are alive and life is grand! At least, when compared to the alternative.... Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: Bagle
Date Posted: Feb 27 2009 at 10:59am
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YEahhh!! Joan, I agree 100%. Not always easy, but what the heck. You sound wonderful. Blessings Rae ------------- Tripneg RBC Metaplastic 2/08 R Mast.2/08 reconst. 4/08 6wks rad.12/08 CT/PET lung lesions.Waiting.. |
Posted By: trip2
Date Posted: Mar 11 2009 at 4:19pm
Hi Rae and welcome.
You know mine came back at 4 1/2 yrs.
They used to say 5 years, now they say the peak is 3 then levels out a bit and starts to decrease but from the charts I have seen it is a slow descent so I wouldn't let me guard down for awhile that is for sure.
Of course we don't want to focus on this issue all of the time but we do need to know where we stand to remain vigilant. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cduvall1
Date Posted: Mar 11 2009 at 6:23pm
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I have a question. From what date do we count the years of survival? Is it the date of diagnosis, the date of surgery, the date chemo and radiation are finished?
Let's enjoy life while remaining vigilant.
Carol ------------- Carol dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09 |
Posted By: trip2
Date Posted: Mar 12 2009 at 3:15am
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Carol,
That is a good question. Some count from the day of diagnosis. Some count from the last day of treatment, surgery removal. I am not aware if there is a correct time really, just when we feel like we can start counting.
My last Onc went by the diagnosis date. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: majjers
Date Posted: Mar 12 2009 at 8:19am
I count from diagnosis because that's when I went into "fighter/survivor" mode. I can see the light of the 2 year mark coming in May and I will have my first grandchild (a girl) to celebrate with! I am also happy to report that I found out today I am BRCA- so that's helped me breathe another little sigh of relief. Girls, life has handed us a lapful of lemons, what are we going to do with them? I say make margaritas and smile! 
------------- dx 5/25/07, Stage 2A,TNGr3 DD 4 AC,4 Taxol 32 rads BRCA 1&2 (-) 7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days! |
Posted By: cduvall1
Date Posted: Mar 12 2009 at 9:44am
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March 28, 2008 was the date of my diagnosis, so I've got a one year anniversary coming up! I'll count from that date until I learn differently. ------------- Carol dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09 |
Posted By: Linda S
Date Posted: Mar 12 2009 at 5:24pm
| This is my first posting. Have been into the site many times, but finally registered. Diagnosed May 2008, six months of chemo (the tumor had been shrinking, but then grew like crazy)!, bi-lat mast November, 5 wks of rad. My onc says he is certain this has met and seems he was right. Current PET scan shows lungs now involved. He has said he may be able to keep me alive for a year after mets. Maybe because of tumor size (4") or lymph node involvement (21). I refuse to think of what time I have left. I live each day as if it's the last. God's in control and I am at peace with this learning experience. I happened on this site and see there are other very strong women out there dealing with this awful disease. |
Posted By: Bagle
Date Posted: Mar 12 2009 at 5:40pm
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Hi Linda, I am impressed by your courage and strength. And I am encouraged. I also have Lung mets, and will start chemo next week. Most of the time I am at peace with this situation, but today seems I am not quite as up as usual. Reading about you and other womens stories here give me encouragement. You are ALL so beautiful, it brings tears to my eyes. I also have lurked and don't post much.But had to say this. Thanks for sharing your story. It meant a lot to me. Blessings Rae I love you all!! ------------- Tripneg RBC Metaplastic 2/08 R Mast.2/08 reconst. 4/08 6wks rad.12/08 CT/PET lung lesions.Waiting.. |
Posted By: Linda S
Date Posted: Mar 12 2009 at 5:57pm
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Hi Rae:
When you say you are having Chemo for your lung mets, (and this may sound like a stupid question), are they trying new ones, or retrying the ones you had in the past. My onc says anything else he can give me will be experimental and not covered by my insurance. He originally left my tumor in so that he could see how it reacted to the chemo. It shrank over the first 4 mons, but then started growing, fast. Just curious. I meet with him on Monday to discuss my options. I guess I'm like everyone. Don't know when that clock starts ticking on my 'one year.'
Linda
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Posted By: NancyJane
Date Posted: Mar 12 2009 at 6:13pm
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Linda:
Just curious if you have gone for a second opinion. You just never know. Something to think about...
Much love and light to you, and thank you for sharing your story. We are all family here. Each of us grows and learns from the one another. We are each other's strenght.
Sending lots of cyber love to you
 Nancy Jane ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: Linda S
Date Posted: Mar 12 2009 at 6:25pm
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Nancy:
Maybe I'm silly but I trust my oncologist with all my heart. (Same goes for my surgeon). He has taken my file to the BC conferences he attends and staffs my case with the other doctors, so I do think he's accessing all the finest minds he can :). This thing just grew so fast in the beginning. From my detecting it until my mammo about 10 days later, it went from the size of a small grape to about 3". After4 mons of chemo it shrunk until it was barely detectable, even on the ultrasound. We were sooooo excited. Then, the week I was to start my final (3) treatments, it grew, literally over night. When they took it out (within days) it was about four inches. By then 21 of 22 nodes were positive, too. I really started to realize then how nasty this triple neg thing is!
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Posted By: cg---
Date Posted: Mar 12 2009 at 7:04pm
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Dear Linda,
Unless the guy in the sky lost his job in this economy...we will just let God take care of the life and death punch cards.
What we definitely know is that there are other chemotherapy options available and it just may be a matter of getting a fresh set of eyes to look at your treatment. You did not mention which chemotherapy you did have first.
Regarding whether your insurance will cover other chemotherapy or not - you find out what would be best for you to have for the next chemotherapy - if the insurance refuses, then we will find plan B and C. (approach the drug company directly, or there are foundations available that will cover chemotherapy not covered by some insurances)....Linda - when one door closes - you find a window and open it - If you need help researching anything - we will see what we can find, and see what is available.
Connie
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Posted By: Suzanne
Date Posted: Mar 12 2009 at 7:26pm
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Linda, you also might want to look into clinical trials.
I'm rooting for you.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Nancy
Date Posted: Mar 12 2009 at 7:35pm
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Linda,
Our daughter Lori had 3 opinions, gathered all the information she could on TNBC, had every test in the books, researched all the doctors in every hospital in PA and then made her decisions. Please seek a second and even third opinion. Evidently the chemo regimen that you were given did not did not kill the cancer cells. Many women have reported that. One was on the taxol and it did nothing.
Lori had ACT,,,Adriamyicin, Cytoxan and Taxotere..all 3 every 3 weeks for 6 treatments. She could not be offered neoadjuvant chemo due to a royal screw up by a highly regarded surgeon here in Altoona. They told her it was a "cyst". Operated, and then cut in to the "cyst", did not get clean margins, and then she went a month later for a mastectomy. The radiologist read the ultrasound incorrectly. It has happened to 3 more women here. Thay all make mistakes. Unfortunately, this was Lori's life that was in jeopardy. So, perhaps they read your ultrasound incorrectly also? It does happen.
TNBC is a nasty cancer, and that is why the women on this site will tell you of their experiences, so that you may benefit from their triumphs and their doctors mistakes. Not their mistakes, the medical professions mistakes.
Please reconsider getting those opinions.
Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Bagle
Date Posted: Mar 12 2009 at 10:17pm
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Linda, I have Metaplastic carcinoma, which, in my case is a combination of a carcinoma and a sarcoma, a soft tissue cancer and a mixture of cells that can change. It really is a monster( as is all cancer) that is not very responsive to chemo of any kind. This is my first try at chemo and my doc is doing research on what will work best for this type of ca. My onco says he will focus on the MCA because that is the hardest to find a chemo for. I am really in Gods Hands and I am ok with that. I am at Loma Linda University Hosp. and the docs are up on the latest research. It helps that I was in nursing for many years(altho retired now) and usually know what they are talking about, and my experience is always saying ....Hmmmm. I am open to any suggestions because of the narrow options. I respect the experiences of everyone here on this list and treasure my lurking moments. But I am out of the closet now. The thing about the ticking clock is this: I could be in a car accident tonight - tomorrow and my clock would stop. When the docs told me - 'spots on your lungs' I thought, I'm dying. My next thought was, but I was always dying, since birth, I've been dying, and so is everyone else. God Bless you all and I hold you in my thoughts at all times. I hope I answered your question. I seem to have gotten on the soap box, but it had my name on it. ------------- Tripneg RBC Metaplastic 2/08 R Mast.2/08 reconst. 4/08 6wks rad.12/08 CT/PET lung lesions.Waiting.. |
Posted By: trip2
Date Posted: Mar 13 2009 at 6:54am
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Hi majjers,
Congratulations on being brca negative!
Have a margarita for me will ya? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Linda S
Date Posted: Mar 13 2009 at 10:47am
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Hi Rae: Sorry to hear about the 'twist' your cancer has. I had never heard of it. I do wish you well. You sound like me: God's in control. It sure makes life easier when you turn things over to Him. And I agree with the whole issue of what time we have left. My husband is so panicked and I keep telling him that this doesn't necessarily mean I'll go first!
I can't believe all the courage the women display!
Take care, Linda
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Posted By: Linda S
Date Posted: Mar 13 2009 at 10:54am
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Nancy:
my chemo was A/C for 12 weeks (tx every 3rd week), then abraxane and carboplatin for 12 weeks, once a week for 3 weeks with one week off between cycles. It was during the final 12 week period that my tumor grew. I went in for the 1st of the last three tx and in the two weeks since my onc had seen me the tumor grew so rapidly. My husband immediately felt the onc had made a mistake in leaving the tumor to begin with, but I don' t do shoulda couldas. I know he staffed the case w/other drs as well as my surgeon, so am confident he did the right thing. I do think you're right about 2nd opinions, though. Never hurts I guess. I have had people recommend several good hospitals, one near me in Seattle. It may come to that. I am so sorry about your daughter. Is she young? I've heard this usually affects younger women. I was smack in the middle of menopause.
Linda
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Posted By: Nancy
Date Posted: Mar 13 2009 at 11:15am
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Linda,
Lori will be 47 in April, 45 at dx. So, perhaps the AC was working, and then the abraxane and carboplatin did not? Very puzzling. You had the AC 4 times and Lori had it 6 times, along with the Taxotere. Please seek another opinion Linda. What can you lose?
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Linda S
Date Posted: Mar 13 2009 at 11:23am
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Interesting. I asked my onc why he was switching chemos when it did appear the A/C was working. He said the risk outweighed the potential benefit and that the most benefit is gained by the 4 txs. Ii am finding that there are as many different answers as there are questions. The more I read here the more I think I will ask for a 2nd opinion. Linda |
Posted By: Linda S
Date Posted: Mar 13 2009 at 11:26am
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Nancy: My prayers to you as a mother. My son died 23 years ago. He was 3 and a half. I know the anguish that comes with a sick child, no matter their age. I also feel bad for my daughter as she is herself a new mother and I know I am keeping her distracted.
Linda
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Posted By: Nancy
Date Posted: Mar 13 2009 at 11:32am
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Linda,
Our grandson...soon to be 21 in a week, was dx with leukemia at age 3, and the heart stopping moments when he was dx and for 3 years following were sheer torture. My heart aches for you, as I can never imagine my life without my daughters or grandchildren. He is our youngest daughters' son.
It seems that every woman dx has these feelings of guilt,and that she is somehow causing a distraction in their family's lives. You are not my dear. This is not a journey you have chosen...it chose you. Your daughter will be just fine.
Much love Linda,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Crystal
Date Posted: Mar 13 2009 at 7:12pm
| My mom had taxotere every other week for a total of 4 treatments then had A/C for 12 weeks. Her last treatment was in Oct 08 and then they found her 2 lesions on her liver Dec 08. The onc told us he was hitting her hard with chemo so it wouldn't spread but then you know as we all do this stuff has a mind of its own. in jan 09 we started with avastin, gemzar, and carboplatin. this week he stopped gemzar and carbo to start Ixempra. He believes teh others had quit working. doesn't know what we will us next we are running out of options. Pray this works for a while and gets us in remission. He keeps telling us that is the goal remission, but I can't find anything out there that tells me once the tnbc has mets you can go in remission is it possible? Has anyone had their cancer spread to other organs then got in remission? |
Posted By: trip2
Date Posted: Mar 14 2009 at 8:37am
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Crystal hon you might post your question in the Recurrence/Metastasis forum and get a quicker response.
All my prayers that your mother does find remission. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Crystal
Date Posted: Mar 14 2009 at 8:47am
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Thanks Pam Ihope so too. ------------- Crystal, Mom has TNBC DX 3/08, Mast and 3+nodes 4tax 5/08 12A/C 7/08 finished 10/08 Mets liver 12/08 Avastin/Gemzar/Carboplatin 1/09 Ixempra/Avastin 3/09 Lost the Fight 6/09 |
Posted By: cweed
Date Posted: Mar 14 2009 at 11:21am
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Pam,
Did yours come back as a second primary or a distant recurrance (mets) of the original cancer? ------------- Cathy, Winter Park FL Dx 12/05 3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b Double mast AC+T, dose dense radiation NED!! |
Posted By: trip2
Date Posted: Mar 14 2009 at 12:24pm
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Hi Cathy,
Mine came back in the other breast and was considered a new primary they call it having nothing to do with the first one.
How are you doing? I see you have NED in your signature, that is good to hear. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Suzanne
Date Posted: Mar 14 2009 at 3:08pm
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I just want to point out that the topic for this thread is a little off. The title should read "Survival Odds IMPROVED After 2 to 3 Years". I'd change the topic line if I could, but I think we're stuck with it.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Nancy
Date Posted: Mar 14 2009 at 5:45pm
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Suzanne,
I just sent a pm to buckeye and suggested what you said.You are right.
Hugs,
Nancy
ps...only the person or administration can edit a post. ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Suzanne
Date Posted: Mar 14 2009 at 6:02pm
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Now why didn't I think of that! Thanks, Nancy.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Nancy
Date Posted: Mar 14 2009 at 6:06pm
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Suzanne,
You are not as old as me?
 With age comes wisdom?  Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: cweed
Date Posted: Mar 15 2009 at 2:52am
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Thanks Pam ... yes, nearing 3 years NED (counting from the end of chemo) and am very blessed.
Sorry to hear you had a second primary. I think (and I'm no doctor) that it is very different than the three year mark the researchers are talking about in the research Joan posted. In that, they are talking about a distant recurrence of the first cancer.
My doctor has been cheering for me all along, but has felt for about a year now that I was past the high risk recurrence window. I was also blessed to be BRCA negative. That said, I did (and continue) to do everything I can to improve my body's chance of fighting this off (very little alcohol, lots of exercise, good diet and brassica tea -- http://www.brassica.com - www.brassica.com and http://www.brassicatea.com - www.brassicatea.com . -- I promise I have no "tie" to them, but the research is compelling ... I order online). I'm not sure how much this all has helped, but it has given me the feeling that I continue to be active in my treatment so it has definitely given me a mental edge. Who knows why some people recur and some don't ... the mystery of cancer and one of the many things we still have to learn. In the meantime, just do all you can to enjoy life and take care of your body. -- [One note: Not assuming everyone is going to run off and order tea, but anyone in active treatment should check with your doc before you do... I know mine wanted me to stay away from antioxidants until I finished radiation.]
And I agree that the title of this string is opposite of what it should be. Our survival odds increase at the three year mark.
Best,
Cathy ------------- Cathy, Winter Park FL Dx 12/05 3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b Double mast AC+T, dose dense radiation NED!! |
Posted By: sharon C Herber
Date Posted: Mar 15 2009 at 9:26am
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Dear all--Just to add another positive note to this thread. My own onc,, who has been in the business a long time, says that in her experience TN recurrence peaks at 18 mos post dx, and that she has never seen a recurrence after 4 yrs post dx in women who have had aggressive chemo and bil mastectomy. She has never been one for false optimism. In fact I sobbed hysterically after my first meeting her and her no holds barred outline of the grim prognosis for a multifocal TN with node involvement like mine. She only scheduled me for 2 chemo sessions in the beginning, because she said I should go straight to surgery if it didn't respond in that time. It did respond with a total clinical and pathological remission. I am now 2 weeks from the magic 4 yrs number and am planning to celebrate.
I wish the same for all of you newbies and beyond. Sharon |
Posted By: Nancy
Date Posted: Mar 15 2009 at 12:12pm
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Sharon,
I think you just wrote the "magic sentence"...
"My own onc,, who has been in the business a long time, says that in her experience TN recurrence peaks at 18 mos post dx, and that she has never seen a recurrence after 4 yrs post dx in women who have had aggressive chemo and bil mastectomy.
I give her much creidit for saying that if she did not see a response to the chemo in that time that she would recommend going for surgery. Give us her name!!
 We have a member who has completed chemo and almost finished with rads, and has a lump behind the nipple on the other breast. "They" are telling her that it is just a cyst. She will have a bilateral after rads. But...what if this is not a cyst? If it is a new primary, then she will begin chemo all over again? I am somewhat confused by what they will recommend.
Two weeks from the 4 year number...sweetie...you should be having the biggest celebration ever!!
 Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: NINASUZIE
Date Posted: Mar 15 2009 at 1:55pm
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Hey Joan,
How effective did you find your chemo regiment? And how were the side effects? I keep seeing Taxanes/arthomycin/cyctoxin (TAC) as dense dose (every 2 weeks AC then T)...and it's good to see some other chemo.
Goood work, girl!
Hugs,
Suzie ------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |
Posted By: Eileen
Date Posted: Mar 16 2009 at 2:52pm
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Nancy:
Does it reoccurance peak 18 months post dx or post end of treatment? Also the 4 years post dx or post end of treatment? A little confused I thought the count was once all treatment was completed. Thanks for any info. I am post dx 12 months now.
Eileen ------------- DX:2/08,3/08 lumpectomy with SNB, clear margins, no lymph node involvement, 4 cycles A/C (dose dense) every 2 weeks, 4 cycles Taxol (dose dense) every 2 weeks, 33 rads finished 9/08, BRCA 1 and 2 neg |
Posted By: Nancy
Date Posted: Mar 16 2009 at 3:39pm
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Eileen,
Many count the date of dx as the date, while others count from end of treatment This article says from date of dx. Take your arrow key and go down 17 times. I cannot find a date on this but the TNBC foundation is at the very end. It also has a graph I think near the end as to the years.
This recurrence issue comes up quite often. I had read 19 1/2 months for another primary or another recurrence. What I find interesting is that it says...much lower of proportion of breast cancers detected by mammography/ultrasound. Sure sounds like my Lori.
Hugs,
Nancy
found a date...2007
http://www.si.mahidol.ac.th/th/department/surgery/postgrad/file/SLGuestLecture/Triple_negative_breast_cancer.pdf - http://www.si.mahidol.ac.th/th/department/surgery/postgrad/file/SLGuestLecture/Triple_negative_breast_cancer.pdf ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Linda S
Date Posted: Mar 16 2009 at 5:52pm
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Just got home from a visit with my onc. CT scan showed a spot on the left lung and the PET showed two hot lymph nodes in my chest. (I didn't even know I had lymph nodes there)! Anyway, they aren't where he can do a needle biopsy so he's staffing with a thoracic surgeon. If the surgery is too hard for me to handle, he is going to wait 6 weeks for another CT. He's opting for what's behind door #1 since he wants to treat aggressively and thinks 6 weeks is wasting time. In any case, I asked when the clock starts ticking as he told me in January that if the cancer showed up again, the most he could give me is a year. He says the clock starts ticking when he starts tx. I think I will just avoid any more treatment in that case! Looks like more chemo in my future. I am not sure I can deal with that again.
Linda ------------- Linda S DX 5/08, A/Cx4,carboplatin, abraxane,bi-lateral mast 11/2008, 9 cm,21/22node positive.rad 5 wks; mets to mediastinum/lungs 4/09. Xeloda/Navilbine w/pending biopsy for skin mets. |
Posted By: Suzanne
Date Posted: Mar 16 2009 at 6:49pm
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Nancy, thanks for the link. I was particularly interested in the graph "Rates of Distant Recurrence Following Surgery". It showed the highest rate of recurrence at one year after surgery, with a rapid drop at three years. Yippee!
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Nancy
Date Posted: Mar 16 2009 at 7:59pm
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Linda,
Sweetie, I would bet that your mind is just racing right now. I cannot begin to imagine what you are thinking, and....Lori feels the same way you do Linda. She has said that she will never go through the chemo again, as there are no guarantees. She does not want to live that way.
Linda, when she had the scare about 6 weeks ago, she said and I quote "Mom, I will just throw myself under a train, as I will be paralyzed if the cancer is in the neck, and I will not live that way".
Will you not go for another opinion? Most docs expect you to do that, and if they are really good docs....which you said yours is...then they are never offended. Did you have a CT scan when you were first dx? They would have that as a baseline and could compare it with this one. There are many lymph nodes in the body, but I think the majority are under the arms...around the breast.
Once the thoracic surgeon takes a look, then you will have a better idea of what to expect. Please get a second opinion...it cannot hurt, and we will all be pulling for you. Please let us know what the thoracic surgeon finds.
Much love and light your way Linda...and I will have you wrapped in a blanket of love,
 Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sharon C Herber
Date Posted: Mar 17 2009 at 4:22am
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Thanks Nancy--my onc is Elaine Chottiner who works with a Clinic called Ann Arbor Hematology and Oncology out of St. Jo's hospital in Ypislianti. She is one of the most caring physicians I have ever encountered. She gave me office samples of neulasta so that a nurse friend could inject me at home after the 24 post chemo and I didn't have to come back to the hospital for that. When she sees a line up of folk waiting to check out at the clinic, she actually looks at everyone's paperwork and sends us home if all we have to do is the co-pay rather than get an appointment.
Sharon |
Posted By: Nancy
Date Posted: Mar 17 2009 at 6:39am
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Sharon,
I know that the Neulasta is anywhere from $2000 to $7000 a shot, and the oncs can giv out samples, so you definitetly have winner with Dr. Chottiner. Not just for the Neulasta...but for being a caring human being. Many are caring, it is just the ones who allow people to endure suffering who need to get another carreer.
The oncologists have you life in their hands, and when they go that extra mile, they make the journey of chemo so much more bearable. Give her a hug for me
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 17 2009 at 9:38am
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Hi Linda,
That so stinks your scans were not what we would prefer, I am so sorry. Has to be a real smack to the tummy, well I know it is, I have heard it a second time.
"there are about 100 nodes scattered throughout the body". This is a quote from http://health.howstuffworks.com/question138.htm - http://health.howstuffworks.com/question138.htm
Is there any way you can try to calm a bit and not look down the long road and wait and see what this thoracic surgeon has to say? Maybe taking this in bits and pieces might be easier than all in one gulp?
Of course this cannot be done easily but if you can it might help take the edge off the anxiety until you learn more.
Have you discussed with him your concerns over what he said in January and if he has now possibly altered his opinion? I am hoping for your sake that after you speak with him again and things become a bit more clear than you can go from there. You have certainly had your rough times.
I agree a second opinion sounds terrific!
I have gone thru the chemo route two different times. After the first time I really didn't think about whether I would or wouldn't if it came back. I didn't think it would come back so that was that. But of course it did and I did go with the chemo. I am now very aware I could be looking at it again and soon but would I do chemo or not? For me personally I would have to wait and see what the whole picture is, probably yes because that is me.
We all make our own choices as is our right.
Best of luck and hope you will keep us updated on what you find out.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Linda S
Date Posted: Mar 17 2009 at 11:37am
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Pam, I am doing okay with the info I guess. My biggest problem is my husband. He is not very strong and gets upset with every bit of news. I still haven't heard from my dr yet. I'll be patient thru today, but will call him tomorrow. He is great about moving fast. I also have several questions that I spaced asking about yesterday. Funny how that happens. I am just so glad I finally found a place where I can talk openly without upsetting someone. I am also grateful for my girlfriends. They are always there. One has already volunteered her in-house services if I end up with the surgery biopsy. She stayed with me after the bi-lateral and I was treated to the best care ever! ------------- Linda S DX 5/08, A/Cx4,carboplatin, abraxane,bi-lateral mast 11/2008, 9 cm,21/22node positive.rad 5 wks; mets to mediastinum/lungs 4/09. Xeloda/Navilbine w/pending biopsy for skin mets. |
Posted By: NINASUZIE
Date Posted: Mar 17 2009 at 11:39am
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Linda,
Turn on OPRAH right now....it's about US! Getting and coping with dx and what to do.....from some very powerful stars, Magic Johnson, Fran Drescher, Montel Williams, etc....and Dr. Oz as moderator
Love,
Suzie ------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |
Posted By: Nancy
Date Posted: Mar 17 2009 at 11:57am
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Linda,
Now that is a true "girfriend" sweetie...and it's not that your hubby is not strong, he is just concerned about you and is worried. These are matters over which you or he have no control. My husband does not like situations like that either.
Love,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: chaya
Date Posted: Mar 17 2009 at 12:47pm
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Nancy - the graphs in that link confuse me. What exactly is "Absence of lymphocytic infiltration?"
Common sense makes it sound like no positive lymph nodes, but they said that means poorer prognosis? That does not make sense ... and scares me because my lymph nodes were clear. |
Posted By: Nancy
Date Posted: Mar 17 2009 at 1:09pm
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Chaya,
I have been searching and I believe that statement refers to within the tumor. Let me get back to you, but perhaps someone else will respond before I post.
Nancy
one...
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=138498 - http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=138498
two..read the abstract..this has to mean within the tumor.
http://www3.interscience.wiley.com/journal/112706958/abstract?CRETRY=1&SRETRY=0 - http://www3.interscience.wiley.com/journal/112706958/abstract?CRETRY=1&SRETRY=0
definition of lymphocytic infiltration
http://www.google.com/search?hl=en&oi=definer&q=define:lymphocytic+infiltration&defl=en - http://www.google.com/search?hl=en&oi=definer&q=define:lymphocytic+infiltration&defl=en
definition of lymphocytic
http://www.medterms.com/script/main/art.asp?articlekey=4221 - http://www.medterms.com/script/main/art.asp?articlekey=4221
lymphocytes
http://www.answers.com/topic/lymphocyte - http://www.answers.com/topic/lymphocyte
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: chaya
Date Posted: Mar 17 2009 at 1:36pm
| thanks!!! I feel much better now! |
Posted By: trip2
Date Posted: Mar 17 2009 at 1:51pm
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I too have been trying to find answers to this question.
I also was looking into interval breast cancer and found this article
http://www.medscape.com/viewarticle/550184 - http://www.medscape.com/viewarticle/550184
Check this out from above article "8] Retrospective review studies on interpretive performance indicate that 15% to 30% of interval cancers appeared on the original screening mammogram initially interpreted as negative,[5-8] which means that the remaining 70% to 85% are generally more aggressive tumors. The sensitivity of screening mammography in the United States is 72.4% to 80.1%[9,10]; thus, approximately 20% to 28% of breast cancers are interval cancers.
Also found it interesting they are still hanging onto the 5 yr mark overall it seems. Even though they are saying our peak is 3 yrs and it begins to descent we are still in high risk according to this article for 5 yrs.
At one point they remark there is a weak relationship betwern node status and tumor size and at another juncture they said these are risk factors.
I have posted studies saying nodes or no nodes, size of tumor, do not matter with this disease. They just cannot make up their minds.
Does anyone else feel like we are going in circles here?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Mar 17 2009 at 2:11pm
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Pam,
Know what I read? ACS has stock in the mammography industry. Gee isn't that a coincidence...them saying that women do not find their "lumps" and is not an effective screening tool. The new thermography or the one that I posted in the resource forum, is supposed to be the best, however, the insurance companies do not want to pay for that?
I have always contended that squishing or sqeezing of my breasts is just inhumane. Mammograms are only 40% accurate. I think it depends on who writes these articles. Seems unjust, but it is the same with all reporting.
Your posting of articles in regards to the size of tumors of TNBC is right on the money. Tiny tumors are sometimes more aggressive, and have to have the same aggressive treatment as large tumors.
They don't have to make up their minds...they just publish the articles, and the belief is that many of the studies are flawed. In fact some are being questioned as to the validity of their findings due to conflict of interests.
Nancy
http://findarticles.com/p/articles/mi_m0ISW/is_256/ai_n6258845 - http://findarticles.com/p/articles/mi_m0ISW/is_256/ai_n6258845
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: NINASUZIE
Date Posted: Mar 17 2009 at 2:37pm
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Oh gosh, yes! I have been reading research on the spread of cancer for TN when a bilateral mastectomy is done....I actually read one dr. response that said no woman has ever died from breast cancer in the breast...it's only if it goes outside somewhere in the body...
Circles? I think figure 8s! Why would they advise us strongly to consider survival rates being better w/bilateral if they are saying this in the next breath??? ------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |
Posted By: Nancy
Date Posted: Mar 17 2009 at 2:46pm
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Suzie,
Where is that article? The truth is just what you wrote. No woman ever died of Bc...just metastsis. Put the link in a poat and I will post it in the news forum. They better start getting this right...these are lives here that are on the line.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: cweed
Date Posted: Mar 18 2009 at 4:23pm
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Suzie, I've always thought that survival rates are better with bi lateral because it almost completely eliminates the risk of a second primary . Some women are advised that a bilateral is not necessary (less aggressive cancers, ER+, or single tumor) but it depends on the status. I was multi-focal in the right breast, lumpy but benign on the left. Surgeon, plastic surgeon and oncologist all agreed that bilateral was the way to go for me. I have to say, it gives me comfort to know I don't have to worry fighting a second primary. I figure, if it grew in one breast, clearly I'm susceptible and I'm not going to leave any nesting place for something else to go awry and start growing. Cathy ------------- Cathy, Winter Park FL Dx 12/05 3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b Double mast AC+T, dose dense radiation NED!! |
Posted By: Nancy
Date Posted: Mar 18 2009 at 4:29pm
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Cathy,
I have always heard the same thing. Breast cancer grows in breasts. If there is no breast tissue...it cannot grow. One is definitely susceptible to another primary.
Suzie said that the article was on breastcancer.org in the metaplastic/triple negative section, but I cannot find it. I searched for over 45 minutes. Maybe it is an article somewhere on the site, but I sure don't know where.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: NINASUZIE
Date Posted: Mar 18 2009 at 6:47pm
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It is in the body of Q and A under metaplastic/triple negative answered by nationwide experts from some of the centers we know treat and research breast cancer. I was concerned that he would make the comment about distant/mat being the villian not being in context with the wisdom of a woman deciding on removing as much breast tissue as she thinks with her team is prudent for her recovery. It is similiar to my conversation with my doc on the decision for my bilateral. He defined another primary and reoccurance, not the root of the problem-the cancer showing up in breast tissue and reducing my risk as much as possible.
I agree with Nancy. These experts need to be responsible to us for what they say. So, I guess we have to "check out " the information with each other in the meantime to know as much as possible. ------------- Suzie ************** Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11 |
Posted By: Nancy
Date Posted: Mar 18 2009 at 7:31pm
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Suzie,
Ok...I give up. I have searched in the Q&A and there are over 2000! yikes!
I typed in metaplastic/triple negative...and nothing. Once you bring it up again, just right click right on your mouse and copy and paste the link here in a post. Make sure you hit the spacer bar so you get a "hot" link. I am really interested as to whom/who made that statement.
I swear...the more articles we read the more confused we become. Dammit! Why can't they agree? Over 44,000 women will die this year alone...not from breast cancer...from metastisis. Breast cancer is not the killer...the medical profession is not agreeing as to what will stop this beast. What are we...experiments? If the treatments work...great...fine...if not... as Connie says...they will just design another product with another damn pink ribbon to sell something! I am dreading October! Bloody October.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Mar 19 2009 at 9:59am
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excuse ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Mar 19 2009 at 9:59am
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I am getting really confused here and not sure what is being said but will re-read the posts.
If you notice when you read these articles, studies, Q & A's, whatever, they put alot of time into explaining what tri neg is, ok we know that, a simpler explanation would do. Or do we? Do they? Is anybody really looking for what the heck it really is??
Then when they get to the heart of what we want to learn there is little to read, more studies need to be done, honest to pete!
They do not know. They are throwing everything at us but the stew pot or that is my feelings anyway. Look at the disaray and confusion in the studies etc., what does that tell us?
Personally at this juncture I feel like I've been treated like a lab rat.
Odd sort of position to be put in when a person is fighting for their life and there is no raft out there to pull them in?
To the new girls, do not let my pratter bother you, you will on occasion see us get frustrated once in awhile but they are getting better at treating triple negs, remember that! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Diamond2Wheels
Date Posted: Mar 19 2009 at 12:05pm
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Hi All, don't no whats going on here...2--3 year mark? whats a mark? Are things to improve after 2-3 years? lol I'm one that is skeptical about that one. I'm goin back n2 chemo..Doxil AGAIN...this thing just does NOT want to gtf out of my body! My left breast is totally embedded with the bad fungus and it seems to want to poke itself out of the last surgical site! a bit ouchy...Oh joy. I'm trying not to take it on (inside me) however, the whole thing is annoying 2 me N would like 2 have it all gone. Doc's want 2 shrink it with chemo first...um, is that a CURE or a Shrinkage drug???? So toxic. I'm not sure I want to do that. What alternatives do I have since there isn't a doctor who will operate. I do no that RAW FOOD diet works somewhat but it is not the immediate answer. I'm so perplexed and stressed over this that I'm not certain what is the answer...ANYONE? Hugs of Love, Tia------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
Posted By: trip2
Date Posted: Mar 19 2009 at 1:28pm
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Tia,
This must be my day to be confused as I am not quite clear what is happening to you. Is it that you've had a recurrence and they want to do neoadjuvant chemotherapy before surgery if necessary? What is your diagnosis?
I'm very sorry this is happening to you and can understand your alarm at doing chemo again.
I am not one to help you with the alternative things but I hope that you find the answers you need for whatever you decide to do. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Mar 19 2009 at 1:34pm
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Tia,
Hi there sweeie...long time no see.
From what you are writing, it sounds as though you and Netterz have/had much in common. She finally got them to remove both breasts just this week. Long time coming believe me. Her breast got hard as a rock, Shrunk up to almost nothing, she had pain into her neck, down her back...you name the pain....she sure had it. She sent us pictures, and it made you want to get the doctors and lead them to the OR in shackles.WTH are they waiting for...as Pam said are they using you all for lab rats? Why will they not operate? If your leg was this bad, would they not amputate?
You should check out her thread....actually one started for her....prayers for netterz. I think it is on the talk forum.
Hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Nancy
Date Posted: Mar 19 2009 at 2:57pm
|
Suzie,
I typed this long post and poof! It was gone. Here goes again.
I now see what you were saying...TN's do benefit from a bilteral. No woman ever dies of breast cancer....they die from metastisis to other parts of the body...lung, brain. The first sentence of your post led me to believe they were saying that TN's got a recurrence WITH A BILATERAL.
What the article states is that they can never get zero cells, there is always a chance that "it" will come back somewhere else. They recommend a bilateral to lessen the chance of recurrence or another primary in the other breast.
Enough before this goes poof!
Hugs,
Nancy
forgot to include the link
the answer to which Suzie was referring is almost to the end http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/index.jsp - http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/index.jsp ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Diamond2Wheels
Date Posted: Apr 08 2009 at 3:17pm
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Hi There!!!
Missed everyone!
I'm on Doxil - once every month, check up 2 weeks after. So far its not affecting me whatsoever! i'VE DECIDED NO MORE STERIODS!!!! Told the Doc I've already gained 50 lbs and I am turning into a beast! so, we're doing without it next treatment. a little vomit never hurt anyone so far, and besides nothing fits me, not even my peacoat or my motorcycle chaps! Those are an expensive proposition. Had to purchase another pair since my other two do not fit above my knees!!! geesh! ( Y ) <- fat butt.
Don't know if this sort of treatment will work!? I sure hope so. I haven't lost hair yet...yet...yes, its suppose to dwindle away! Uggh, again! It'll be worth it if this shrinks the cancer completely! Originally they wanted to perform a latisimus dorsi flap. OUCH! Thats a hairy operation of 9 hours for the first operation and 3 more small ones after that! That is IF I am allowed to have RECONSTRUCTIVE surgery!
I'm not sure what will happen...hopes for the best, whatever that is. My insurance will NOT pay for reconstructive surgery...so I'm sorta upset over that! They tell me I have to find someone IN Network...and will not give me an 'IN for OUT' so I can have reconstructive surgery! (I've a few words for BCBS
 ) their IN Network surgeons are pathetic! I haven't enough skin for just a mast...so, that is WHY they are shrinking my tumors...been since August 08...and I have developed 3 in my quest to get reconstructive after a mast...IMAGINE THAT ONE!!If you have any suggestions, I'm open to them.
Meanwhile, What does it mean Survival Odds improved after 2 to 3 years Mark??????????????????????????
Everyone is different and everyones cancer is different...we all have similarities...Cancer is Cancer. Ours just grows faster! Luckily, it is in the breast...we can cut it out!
 What do these people get when they go to EUROPE for treatment???? They seem to return healthy and cancer free!
Ok, I'm out of here...
HAPPY HOLIDAYS EVERYONE...eat your greens!
HUGS OF LOVE
TIA ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
Posted By: sibu
Date Posted: Apr 08 2009 at 5:20pm
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Hey Tia, Good to "see" you again!! Glad to see that your big butt made the first paragraph of your post, whereas the lighter stuff like cancer is in paragraphs 3-5. lol The two to three year mark thing refers to improved chances for tns if you make it to the 2 or 3 year mark without mets. If we make it to 5 years, we are said to be home free, so to speak. Whereas other bcs have a more steady chance of recurrence throughout their lifetimes. That's my paraphrase--there are articles out there to this effect. I don't know how they'd classify YOU and your world record recurrence rate; you are one in a million. So why don't you go ahead and start counting from first dx. As far as other countries, we have several women on this board from Europe, Japan, Australia, etc. Most of their treatments seem to me to be similar to ours, although many still do the FEC instead of TAC. And one reported that they send you away to a spa-like recovery center after treatment! I'm moving there. What you may be hearing about are European researchers considered far advanced to the type of research they do here. Dr. Hamer is one to Google. www.healingcancernaturally.com/hamer.html . He does cutting edge research on blood markers not done in the U.S., among other things. My sister also worked with sanoviv.com in Mexico, who offer a full range of cutting edge stuff in combination with leading docs in San Diego. Have you read the book Outliers by Malcolm Gladwell? It's not cancer related, but opens with a big study of a community of Italian immigrants who have virtually no heart disease. After running all the usual medical, genetic, dietary, etc. tests, they determined that they were healthier not due to any of that, but because they enjoyed close-knit personal relationships, sense of community, etc. Nobody really knows. Once you open somebody up, cancer can spread like wildfire. Especially if there are multiple locations/mets. Just my personal anectodal "knowledge"--surely some out there would disagree. This may be why they don't want to cut. Much Hog-ridin', hair-in-the-wind love your way, my dear. Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: sharon C Herber
Date Posted: Apr 09 2009 at 5:18am
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Hi all--I'm chipping in on the pollyanna side "time to cure" question. Yes, I know we are never "cured", but there is a point at which the odds of its coming back/metastasizing dwindle to the insignificant. And, yes, I get that a tiny statistical chance is totally significant if you fall into that category. That said, my onc, whom I called Dr. Depresso in the beginning, tells me, and has been telling me from the beginning, that she has never seen a tn come back more than 4 yrs after dx. She's been in practice 25yrs +. Now you might say, how many tns has she seen? They weren't even calling it that until about 3 yrs ago. Well, one of the things that impressed me about her when I was choosing an onc 4 yrs ago was that she called the hormone status from the mammograms and scans, before the pathology report came in. The docs at UM were sitting around proposing a clinical trial, assuming I was hormone positive, since I was 60. She called me and said, "you cannot fool around with this. It is a bad, aggressive cancer. Looking at your scans I am almost positive it is est. and prog. neg and probably her neu pos." Well she got 2 out 3 right, and even though they weren't using the TN label then, she could spot the beast for what it was.
So that's my two cents. I didn't worry daily about getting breast cancer before I got it, when my chances were much higher of a primary they are now of a recurrence. Don't get me wrong, there's not a day that goes by that I don't think about it. I have total sympathy about recurrence anxiety and still have my share of it, but I do believe the odds are very much on my side now. And I think that with the broader recognition of TN's deadly threat that's occurring now, thanks to this forum and the work of many dedicated researchers, and the resulting recognition of the need for aggressive treatment of TN, at whatever stage it first presents, the odds are much better for all of you that are starting out. It's a lousy dx, but hit hard at the beginning it can be survived. keep fighting, never surrender! hugs, Sharon ------------- dx 03/05 multi focal with lymph involvement, stage II/III 4 dense dose A/C, 4 taxol, bil mast 8/05, 38 rads, NED |
Posted By: cgraves3rv
Date Posted: Apr 09 2009 at 11:37am
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Hi Tia, I don't know your history but you mentioned you are having a problem getting approval for reconstruction. If you had a mastectomy, it's a federal law that your insurance company must approve your reconstruction. They can't quibble about it. If it's some other type of reconstruction, then I don't know... Good luck, Connie |
Posted By: trip2
Date Posted: Apr 09 2009 at 11:47am
By any chance since it it is law do they pay 100%? I would love to get recon but can't afford the co-pays. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cgraves3rv
Date Posted: Apr 09 2009 at 12:19pm
| I think you are always stuck with co-pays unless you cap out. I have been somewhat lucky in a bad way. DH is a 100% disabled vet so he gets all of his medical through VA. I get my medical through ChampVA. I have a low annual cap so since I started this nasty little cancer journey I have capped out pretty quickly each year. Especially since everything is so expensive. Check with American Cancer Society to see if they have any grants for something like reconstruction. Maybe some of the other groups do also. Also talk to your hospital to see if they would accept what insurance would pay. Some will do that. And also your doctor. Maybe someone else has an idea? Good luck and thank you for all your good wishes. Connie |
Posted By: trip2
Date Posted: Apr 09 2009 at 12:48pm
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Well you have some good ideas there, thanks! Yes I think they even raised our cap this year. Good grief you don't want so much to go on but once you get capped out you need to do whatever you need done then! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Diamond2Wheels
Date Posted: Aug 05 2009 at 4:03am
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Connie, Sharon and Nancy,
Thanks for the 411...its all good!
As far as the mets...well, I can't make a year without having it return. I've had 5 operations...the first doctor (that is what she calls herself) had given me a lumpectomy with lymphnode removal and LEFT ME OPEN! Yes, she did not sew me shut! HOW I FOUND OUT>>>I had phoned her to tell her that I am allergic to adhesive and my skin was bubbling underneath the clear tape.
She told me to get into the shower and remove it as gently as possible, (which I did just that)...and to my horrifying suprise looked down to see my breast had a hole in it and I was looking at the inside flesh of my breast!
I was mortified...and yes, I had a reoccurance immediately! (lawsuit #1) She was also cold to me when I had 104 temperature and asked me to come in at the END of her day! and if you know Long Island's 495 Expressway traffic....its like a parking lot...this isn't a good time to drive, period! I did drive myself...with quite a few stops along the way to pass out...sat in her waiting room asleep for hours and then they asked me to wake up and get n2 the room and put a gown on!
It took 4ever to walk...by hugging the walls to help me walk to the room, all the while her 'assistant' watched without helping me! and of course I couldn't change into a gown without passing out on a cold hard floor, so I didn't...
When she arrived in the room... she rolled her eyes at me and asked me to inhale after inspecting my drain-she said oh 10 days is enough..."inhale" so she could remove the drain under my arm! I begged her not to...she insisted since she claimed I would get an infection..argued with her about how feeding tubes are in people with no problem...and since I was still draining lots of fluid to please let it stay 3 more days...needless to say, I ended up n the hospital for 7 days with an infection because of this and because she gave me the wrong antibiotics!! Uggh.
NOW...a little FYI
All the Oncs on Long Island...(and I interviewed alot)...all claim the chemo I was givin in NYC was so much and so harsh they are suprised I was still alive! -------- And yes, I am terrified of returning to that deadly poision!
Here is the clincher...AGAIN, I have a reoccurance in the breast...this time it hurts alot...and all the time...it even looks like it wants to come out of my skin! It is by the surgical site and a new one by my nipple...(which one doctor took a biopsy there when I told him it was the implant getting pressured from my tumor and not to biopsy it...he insisted...but used the SAME implement he used to biopsy my surgical site! ) I have terrible luck eh?
Hense... My insurance company will not allow me to have the doctor of MY choice...the two other doctors on their list - one says remove it totally without reconstruction but he warned me I would look totally abnormal since I would be MAMED FOR LIFE and that I should find a good JOB with BETTER INSURANCE!!!
The other doctor on their list...wants to do a latisimus dorsi flap although...looking at his book...uggh! I was HORRIFIED at his surgery! These poor women were mamed for life with scars beyond belief! Some of them the muscle that was moved to the breast, burst out of their skin!!! The breast reconstruction was up near their clavical bone! Now there is another man who never paid any attention to the female body!
So, yes, I am in a panic...tried fighting my insurance company without any yes answers...
In my search for a good surgeon...I did find a wonderful surgeon with hands of gold...they call him the Mistro...his speciality=he reconstructs ears and hands which is, I am told, one of the hardest reconstructions to do. I want him...my insurance company said NO to me!!! What can I do????
I'm in terrible pain and quite frieghtened at this interval of my cancer. My breast is tight and I get twinges of pain along my day. I'm afraid.
Connie look into a 'Supplemental Needs Trust' since you can not afford the co-pays. I am starting one since I can not afford the co-pays either! Apparently, it is a legal document to open an account that all your expenses are taken out of...including your insurance premiums, co-pays and general expenses ie...gas, food, rent/mortgage, car insurance and it deducts this from the 'cap' of other help you can get from the government..ie food stamps, medicade/medicare, rent payment help and a bevy of other things...I'm on Long Island and the Nassau/Suffolk Law Services Committee are helping me set this up. Hope it helps you as I know that awful feeling of expenses when you NEED to see a doctor!
Peace and Hugs of Love
Tia
PS Sorry, I haven't been online = I have moved my residence. I'm in a very amazing, peaceful chalet of a home in the woods donated by a biker friend-I live alone by the beach with song birds and sunshine!...the topper as of recent- I have just met a gentle natured man who is also a biker who has a nature of a Buddah and after an informal introduction from a breast cancer survivor, has turned n2 an angel in my life, who in his arms, lost his mother to cancer!...I am so fortunate to be blessed in my time of need. Namu Myoho Renge Kyo! I have never given up on God. ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
Posted By: ChrissieD
Date Posted: Aug 05 2009 at 4:26am
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Tia,
I am so sorry you are having to go through all of this. Shame on the doctors and nurses who have not shown you compassion! Good golly that is terrible.
As mentioned in an earlier post, it is federal law that you can get reconstruction. My surgeon told me it doesn't matter when you have it either. I am contemplating having tattooing and he said I did not have to have it now, I could decide 5 years from now to do it and it would be covered from my bi-lateral.
If you are considering having any kind of flap procedure you MUST go to a microvascular surgeon who is an expert at the type of procedure you want. This is critical to reduce the liklihood of failure. I would venture to guess the really good ones have folks in their offices who are used to writing to insurance companies on behalf of patients. Find a doctor you like, whose work you like, and have them contact the insurance company. If you are not a candidate for expanders/implants then I would think they would be able to make the case for you. Also, keep in mind you have the breast tissue removed and do the reconstruction later. While not ideal to have multiple surgeries if that would help you to feel better that may be a way to go. I would also encourage you to find a breast surgeon who is kind and compassionate and who thinks you could have a good cosmetic outcome.
Best of luck to you.
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Posted By: Diamond2Wheels
Date Posted: Aug 05 2009 at 4:56am
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ChrissieD
That was a help...I will ask them for a MicroVascular Surgeon then! Maybe then it'll be put into a category that will help me feel safe in surgery. And yes, I know it might be best now to remove the breast before reconstructive surgery but...
how odd I will lQQk with a 34C/D cup and zero on the other side...I love my cleavage and just so attached to those two bumps and my stupendious nipples! I know it sounds silly, but I was always proud of my breasts!
The 411 was helpful. I will let you know what the outcome is! xoxo
Peace and Hugs of Love,
Tia ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
Posted By: Diamond2Wheels
Date Posted: Aug 05 2009 at 5:03am
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Donna
When you make your flight...include me.
I could go for a spa during my recovery as well...
but that doesn't get rid of my ( Y ) big bertha butt!
teeheeeee
Tia ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |