any long time survivors of tnbc?
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Topic: any long time survivors of tnbc?
Posted By: josie
Subject: any long time survivors of tnbc?
Date Posted: Mar 26 2008 at 11:19am
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Please respond and let me know (to give me courage) if you are a long time survivor of TNBC. My grade is3/3 (Very aggressive) in all categories. I am lymph node negative but it was invasive and 2 cm. I was diagnosed in March 2006. I am petrified of a reoccurance because the doctors tell me it would be stage 4 if I have a reoccurance. I had a bi-lateral masetomy, 4 treatments of AC, and 4 treatments of Taxatere. Now I am scared because their is nothing else to take to prevent a reoccurance. |
Replies:
Posted By: kirby
Date Posted: Mar 26 2008 at 4:57pm
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Hi Josie,
I was dx. Feb. 2001. I was reading with interest tonight, the posts that are saying adriamycin isn't effective for TN. I do realize I am a lucky one. I was given 4 rnds of AC for a 2 cm tumor. That is what protocol of the day was. More of my statistics with my signature. Sometimes coming on here and reading is scary because so many are in the throngs of battle now or have finished recently or are dealing with reccurance. I like being aware, which is why I check with this sight occasionally but only found this sight this past Oct. I think you are able to pull up all posts I have written to see how the emotions run up and down and the advice to others asking your same question.
Good luck to you. Let me know if there is anything else I can answer. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: trip2
Date Posted: Mar 27 2008 at 3:30am
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Good morning Josie, we understand what you're feeling. When treatments are done we just go to our check-ups and stay vigilant. Otherwise try to get busy at your own pace trying to put your life back together.
We are all afraid but we try not to let it take over our day. Cancer wins if it keeps you down all the time. If you are having a particularly bad day and thoughts are not good ones or scary try to find something to distract you if only for a few minutes. It will get better as time goes along.
I a 5yr two time survivor. You have to remember too that alot of women do not get bc back.
They are working on some things for triple negatives, hopefully something good will be just around the corner.
Because of this Foundation we are finally getting some attention!
Write anytime,  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: shellieh51
Date Posted: Mar 30 2008 at 10:52am
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Josie, Don't forget what my doctor refers to as the most important tool against recurrence - exercise! He says 3 hours per week cardio - I've discovered that the cardio workout on the treadmill is pretty good and I can do 30 minute increments easier than blocking off three hours. I know it is difficult when you finish treatment and you are 'out there' and you feel helpless. I've never been a huge fan of the 'e' word but if it keeps the monster at bay, it is well worth it. Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: josie
Date Posted: Mar 30 2008 at 2:42pm
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Hello Pam,
Thank-you for all of your encouraging words, advice and for taking the time to send me your thoughts of inspiration.
Take care, Josie
PS: Do you take and special vitamins or anything to help prevent a reoccurance?
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Posted By: billie
Date Posted: Mar 30 2008 at 2:52pm
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Hi,I am writting for my sister.She is 68 and is stage (or should I say was stage 3)I do not know if we are looking at this in the right way (at the present she is cancer free)because of the lumpectomy and no cancer in the lympth nodes.Because my sister does not get on the internet very often I began to search breast cancer to try to find out everything that we possible could..diagnosed in Feb.08.along with a patology report.The surgeon was the first to say that the invasive ductal carcinoma was one of the most common out there.I was really scared,but I thought,ok surely there is standard treatment.Still scared ,but feeling a little better.
I always watch Robin Roberts on GMA and am aware of the fact that she had lost her hair with her bout with bc so she must have had to have chemo.My sister was told that since hers was found so early she would probably have to have radiation only.Anyway back to Robin,I was at my computer searching and listening to the tv when Robin and Chris Rocks Wife mentioned the one called triple negative and Robin said that that hers was called that.And again I knew that Robin had lost her hair.I thought to myself ,I am so glad that my sisters is the most common one.And then I began to look on my copy of her pathology report ,was it possible that I was reading the negative ,negatve, negative.,beside those 3 things.I was so in hope that I was wrong.But of course I wasn't.
Oh my goodness.Now how. do I tell my sister when she is schduled for surgery in 2 more days.What do I do?She felt so blessed that she was only going to have to have radiation only.I tried to mention tn to her and she quite frankly did not want to hear it at that time.Her mind I'm sure was still trying to process all that the surgeon and the oncololist had told her.
She had the lumpectomy and the sentinol lympth node surgery and thank goodness,none in her lympth nodes.When she went back to the surgeon for the follow up ,he at that time told her that she would have to have chemo and radiation and that hers was called tn.
She seems to be accepting this diagnosis better than me.I am scared to death for her
 ,But.I am always very possitive around my sister. I am torn between wanting to know everything about tn and yet I wish that I knew nothing about this tn.,so that we could just let the DR.s do their thing.So guys I hope that I am doing this right.Maybe reading what you guys have to say can help me calm my mind some.Thanks Billie |
Posted By: shellieh51
Date Posted: Mar 30 2008 at 3:52pm
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Welcome Billie and your sister! I know that this is a lot to
digest so try to take your time, don't read too much about cancer at
one time, and stay on national sites whle you are learning. Write
down your questions and ask the professionals at the oncology
office. A diagnosis is so overwhelming that it seems to work very
well to break everything into parts and take one step at a time. This is an excellent site and the participants are very caring and knowledgeable. You and your sister are in our hearts and prayers. Love you. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: trip2
Date Posted: Mar 31 2008 at 3:17am
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Hi Billie, welcome to you and what a wonderful support you will be for your sister.
My goodness, this is all so recent and she is having another surgery in 2 wks?
Write down any questions you might have for the Onc for the next visit.
It is all very confusing.
Let us know your sister is doing, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: paula
Date Posted: Apr 02 2008 at 9:32am
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It seems from several posts and from other friends that if your going to reocurr it seems to happen just after the 5 year mark. Why is that? ------------- DX Feb 4, 2004 Lft NST IDC, 1.1 x 0.5 x 0.4 cm, Stage 1, GR 3, 1 of 17 nodes CEF 2 of 6 cycles 30 Rads w 6 boosts Regina, Sk Canada |
Posted By: kirby
Date Posted: Apr 02 2008 at 7:03pm
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Paula,
From the posts I have read with TN it is most likely to reoccur in the 2-3 year mark. I am sure others will post with statistics on that. Of course, with cancer, we all know it can be many years later. The likelyhood is just much less.
Live life..not with fear ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Raine
Date Posted: Apr 03 2008 at 5:29pm
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Josie I was dx Jan 1997 with 6+ node, so am 11 yrs out from my triple neg dx and now almost 2yrs from my 2nd dx on the other side also triple neg. Hope that seeing that there are long term TNBC people here gives you the encouragement you need raine |
Posted By: josie
Date Posted: Apr 05 2008 at 2:34pm
| Thank-you so much for your encouraging story and repy. Josie |
Posted By: trip2
Date Posted: Apr 06 2008 at 4:10am
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Thank you so much Raine, it really does help. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Joan2844
Date Posted: Apr 06 2008 at 9:57am
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Josie, HOW does your doctor know that a recurrence would automatically be a stage 4 cancer? Forgive me for second guessing your doc, but I don't know how anyone can predict something like that?? I feel better now, knowing that I am watched closely -- any new cancer I might experience will be caught early. My cancer was dx in October 2006. I finished treatment 11 months later. Since then I have focused on getting my energy back. I feel lucky to be triple negative. I do not have to fear the estrogens that are naturally flowing through my body... I do not have to take heart-damaging drugs (Herceptin) and worry about my cancer becoming "resistant." Our trip-neg cancer responds better to chemo than the others, so we've already fought against it. True, no one knows what "triggers" trip-neg. I tend to think of it as divine grace. My life before the cancer was on auto-pilot, and I was putting off so much for "someday." Now, I try to live as much as I can EACH day. That is a gift. (Triple negative breast cancer is one of the most positive things that has happened in my life! ) It is important to keep your follow up appointments with doctors you trust. Get copies of your reports. Ask questions. If your doc will not answer, find a new doc. I drive 2 hours to see an oncologist who I think is the very best in my area. Locally, I have a nurse who I think is an angel on earth. It is important to have good doctors (even if they are far away) as well as local advocates. Also, I started reading the statistics and reports. They can be hard to read, but you have to have perspective. Trip-negs have "poorer prognosis" and etc... But sometimes they are talking about a difference of less than 5 percentage points. That is not information worth ruining my day over. Stay informed. Keep it all in perspective. Look for new information. So much info is rehashed over and over and over again... We bought a treadmill, and walking has become so important to me. I listen to life-affirming songs (Bon Jovi is great, surprisingly!), and I walk 30 minutes each day as much as possible.  My diet still needs ALOT of help. I use my three boys as an excuse not to eat better...  Would welcome useful, practical help from someone on that issue! Helping others is a way to help yourself. I got a part-time job at our local library, and it has been a God-send -- something else to focus on each day instead of my cancer. It affirmed that I am a useful, viable ALIVE person. Not just a cancer victim/patient, like I felt for so long. And, I have a strong faith. I truly believe in Jeremiah 29:11... God has a plan for my life, and he is not a God who wants to harm me. He loves me. Yes, if the cancer comes back He and I will have more heart to heart talks. I will not be happy about a recurrence. But, I will trust Him to see me (and my family) through. Hang in there, and keep your head high. Cancer is so much to get over. I deal with side affects of it every day. Mostly breast tenderness from radiation. Tomorrow I get the results of my annual MRI. I'm nervous, but determined to do whatever might be necessary if something is found. We are stronger because of the cancer. ------------- 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: josie
Date Posted: Apr 06 2008 at 3:26pm
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Hi Joan,
Thank-you so much for taking the time to send all of your wonderful, inspirational words. I can tell you are truly a very special woman and I know God will send you many blessings for your goodness.
I wanted to try to explain to you though, that the reason a reoccurance would be stage 4 in my situation is because I chose to have both breasts removed even though the cancer was not in both breasts. So God forbid, if I were to have a reoccurance it would be in an organ or bone which is considered and staged as stage 4. With you, and many others, you still have breasts and if it came back again in the breast tissue and was not found anywhere else it would not be stage 4. My cancer did not get into the lymph nodes but it was invasive which means it came out of the milk duct gland and into the surrounding breast tisssue. We have blood vessels in our breasts and my understanding is that if any cancer cells made their way into the blood vessels that is how it travels to other areas of our bodies and shows up sooner or later. So you see, this is why I am scared. I also have a little boy who I want to see grow up......... I am catholic and pray quite a bit, attend mass weekly.... and did so before my diagnosis. I love the quotes you sent from the Bible also. I also have difficulty eating the "right foods" because I figure life is too short to deprive yourself of some foods you desire. I do 20 minutes on the treadmill and go to a yoga class that I absolutely love. If any of you survivors have never tried yoga class I so very much reccomend it. Just try to find one like I belong to that is gentle yoga. I guarantee you will find it very helpful in many ways. Please respond back if you can Joan and anyone else about what I have just wrote and tell me your thoughts and feelings. I live in Michigan by the way. God bless all of you!!!! Josie
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Posted By: nikkia131
Date Posted: Apr 15 2008 at 3:46pm
| I am a caregiver for my sister in law and best friend who is triple negative with mets. Her original diagnosis was in August 05, she had an 8cm tumor in her right breast and 20 lymph nodes involved, she chose to do a bilateral mastectomy and the pathology found early cancer in the left breast as well. She is BRCA1 positive. 38 yrs old. She also had a hysterectomy, chemo and radiaition. She was diagnosed with mets in august of 07. She has liver mets and abdominal node involvement. She is currently on a clinical trial which combines abraxane and avastin. She is on a weekly regiment, indefinitely. Those are her stats, but along with those facts here are some more.....She has three young children, 2, 6, and 7. She is a friend, a mom, a wife and an all around inspiration to so many. She gets up everyday and functions like the rest of us, she goes food shopping, takes a walk, celebrates a friends triumph and attends school events, my point? She lives each day, with a smile, happily, showing us "how it is done" I tell her almost daily....."Always remember that every cancer has been beat by someone" Keep the faith and enjoy each moment, her cancer has given me the forsight to use my life. I am proud and amazed of the courage all of you display and want you to know that you teach us more than we could ever hope to learn and we are eternally grateful. Stay strong. |
Posted By: Wendy2
Date Posted: Apr 16 2008 at 1:54am
| If you are interested in the recurrence stats. and chats, go to the recurrence chat room. |
Posted By: Lisa L
Date Posted: Apr 16 2008 at 12:11pm
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Josie,
I am almost to 3 years as a survivor. 4.5 cm tumor, no node involvement, also grade 3, most if not all triples are grade 3. I know of a lady who posts here occsasionally who is a 21 year survivor who had 22 positive lymph nodes and has had no recurrances. There is hope. Hang in there and think positive thoughts. ------------- Dx 8/05 age 43 mast & lat flap 10/05 Triple neg BRCA neg IDC 4.5cm rt br 0/1 sen node 6 A/C 5 Taxol, 25 rads 11/05-6/06 Central Illinois Currently NED |
Posted By: Lesley
Date Posted: Apr 20 2008 at 7:11pm
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[QUOTE=Joan2844]Josie, . My diet still needs ALOT of help. I use my three boys as an excuse not to eat better... Would welcome useful, practical help from someone on that issue! I am certainly no expert on this, having just been diagnosed myself, but I recently read the book The China Study, by T. Colin Campbell, (2006), and it strongly presents a case for going vegan - no meat, no dairy, no eggs and for avoiding simple sugars and white flour. I have not fully committed to becoming a vegan, but I have been eating primarily fruits, veggies, whole grains and lots of beans and legumes (thank goodness for cannned vegetarian chili!) for the past few weeks, and it actually hasn't been as hard as I thought. Since i'm totally addicted to soda, that's my next target, but the caffeine withdrawal is going to be tough! I'm finding that by primarily eating these foods, I don't have to pay too much attention to fat, because my fat has always been mostly in the form of dairy foods or baked goods with white flour. I'm sure it will get harder, and I'll have my ups and downs with it, but so far it hasn't been bad at all (but I do like most vegetables and fruits), and I'm willing to do it if it will keep me alive.
Exercising....that's where I could use the motivational kick right now!
Lesley
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Posted By: Cheryl51
Date Posted: Apr 21 2008 at 6:25am
I just had a clear Pet/CT scan and now don't have to go to my oncologist for 3 months...feels like a real vacation.
So now it's the "wait and see" phase." I wonder how others handle this part of the journey?
I'd be interested in starting a discussion around this. Anyone else?
Cheryl51
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Posted By: cg---
Date Posted: Apr 21 2008 at 7:04am
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Dear Cheryl51, Cyber hugs are being sent your way. I know the relief you feel when you exhale after (almost holding your breath) waiting for the results. I am trying to sort out the myriad of emotions I have experienced since finding out my scan was clear last week...combined with my up and coming 1 year anniversary of my diagnosis. This 1 year mark reminds me of the 18-24 month period of time when it definitely would not be in my best interests to have a recurrence. My next appointment is booked for 3 months and I am dreading it already!
I have never marked time before like this (with the exception of two 9 month periods when I was so excited to see my children born!)
I feel like the sword of Sword of Damocles is hanging over me.
I know I liked the even keel of my old life without the highs and lows of this disease.
I am doing work I love, surrounded by people I love and who love me....and yet I feel this TNBC is almost like a stalker which deprives me of the freedom of letting my guard down.
Sorry, if this is not what you meant....
Connie
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Posted By: Cheryl51
Date Posted: Apr 21 2008 at 4:11pm
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Dear Connie, Thank you for the hugs! I send them back at you. Thanks also for your honest and open response. I just finished treatment on 10/31/07 so I'm just beginning the process. I had some complications and will go to a clinic tomorrow to have my truncal lymphedema evaluated. But, hey, it isn't life threatening. I also have work that I love but am feeling like I would love a break from it all. I have a husband and a 15 year old son and a busy psychotherapy practice. I find myself needing quiet time for reflection and sometimes having trouble giving that to myself. Like you, I feel like TNBC has put a mark on me. Living with the uncertainty of a possible occurance is indeed like a sword over the head. Mostly I live in the present moment and don't think too much about it. Sometimes I feel sad and, unusual for me, don't seem able to access the tears. Again, perhaps the need for space.. By the way, the 9 months I was pregnant were one of the happiest times of my life..particularly with the arrival of that baby boy! How odd to end all these months of treatment with, as you said, such a myriad of feelings and a sense of incompleteness.
Warmly,
Cheryl51
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Posted By: ellenweav
Date Posted: Apr 22 2008 at 1:52pm
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My Dr also said IF it reappears it will reappear within 3 years - after that the chances are quite slim......
Hope & Friendship Ellen TN - |
Posted By: cg---
Date Posted: Apr 22 2008 at 2:50pm
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Dear Cheryl,
I have a therapy that has really allowed helped me "sort things out". Basically, it is pounding the pavement therapy....the weather is beautiful, warm, sunny, and I take my beloved Paco (120 lb German Shepherd) and we walk anywhere we feel like investigating. No walking friends, no typical course we used to travel, no time frame for our adventure. I take water/bowl for him, money, jacket and go. Interestingly, I walk, sit by the water, watch rowers going up and down and I think, as they glide in perfect unison, how I need to regain my momentum and the natural rhythm of my life once again. The nature of my work has me constantly listening to voices coming through my headset.....so I understand the need for personal quiet reflection that is apart from the sounds we love to hear, like "Mom".
Not discounting the positive impact of a human therapist... fur therapy is available 24 hours a day for the princely sum of a kind word, a loving stroke and the occasional biscuit!
Connie
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Posted By: neicybroomer
Date Posted: Apr 22 2008 at 2:55pm
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Josie
thanks for asking your question. I am new to this site and I find myself visiting it quite frequently-to hear straight forward answers as well as comfort. I am stage 4 and I had tumors in both breasts, mostly in the left. I had affected lymph nodes in the axilla area and a couple in the supraclavicular area. No lumps in my breasts. I am scared. I am 43 and was dx 2 years ago. I know my chances are great since it had mets tothe supraclavicular area (per oncologist). Everyday, I wonder if the pain in my head is a brain tumor. right now, I am concerned about my shoulder that has been hurting very badly. I had a MRI on Friday, shoulder and Cspine. When my hip hurts I think bone mets??? It's hard. Being in remission can be great, but your mind is still wondering day in and out. I was given Adriamycin, Cytoxan and Taxol and it worked for me thank the lord. But I will keep checking on this site for more info. take care
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Posted By: Cheryl51
Date Posted: Apr 22 2008 at 7:25pm
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Dear Connie,
One of the things I most enjoy is walking my Australian Shepard,Callie, out by the San Francisco Bay at a dog park where dogs can run free. I can gaze out at the Golden Gate Bridge, little sail boats, gulls. Callie gets to bound through the grass and I get to disappear, too. There's a little cafe that serves dog ice cream and also treats for humans. We often get a table for two and sit together contemplating the beautiful scene...
It's so true...these canine companions are just the best when we need that furry healing.
Be well and enjoy those moments in the sun.
Cheryl
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Posted By: trip2
Date Posted: Apr 24 2008 at 5:39am
Cheryl51 that is wonderful that your scans were clear, that is such a relief to hear isn't it? 
I am approaching my second post treatment check-up and it makes me a bit queasy but I'm glad we have them. In between I try not to think about them but when the card comes in the mail to schedule an appointment then my tummy drops and reminds me of what we all go thru but we need to do it and it's always a relief to hear good news and then whew, as you say a vacation for 3 months.
I was reading your post about you and your dog Callie and I could just picture the two of you by the Golden Gate eating ice cream. Sounds very peaceful, gorgeous and relaxing.
My 21 yr old daughter's name is Kali.
 Big hug, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Cheryl51
Date Posted: Apr 24 2008 at 6:11pm
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Pam,
It's great to have you back
Always a relief to get the good news, for sure. Stomach muscles relax.
When is your next appointment? Stomach muscles tense!
I had my eval at the lymphedema clinic this week. I'll get started on May 5th with the lymphatic massage, which they will teach me to do myself. They'll also order me a sleeve(although it's the breast that is mostly the issue) and I am told that from here to eternity I must wear it on a plane or when I go to higher altitudes. The therapist said she doesn't know why the docs are so reluctant to diagnose lymphedema and get going on it.
So for any of us who have to deal with this...be assertive!
Wish you could join Callie and I for a walk. Your daughter's name is beautiful. Is she a namesake for that powerful Hindu Goddess?
Hugs,
Cheryl51
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Posted By: cg---
Date Posted: Apr 24 2008 at 6:55pm
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Cheryl51 wrote:Posted By: trip2
Date Posted: Apr 25 2008 at 5:21am
Hi Cheryl51, I go in next week for the bloodwork and the following week for check-up. Yes the tummy is tensing.
How interesting about the Hindu Goddess Kali, thank you for bringing it to my attention. No she was named in another way, would you believe hubby made it up only to find after we moved here that there were several Callie's going to school so my daughter got a big kick out of that.
I did read about the Goddess Kali and she scared me.
Hugs to you, Pam ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Cheryl51
Date Posted: Apr 25 2008 at 7:19am
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Pam,
I'll be checking on those results next week!
The Goddess Kali is powerful feminine force. She is known for getting the job done...no nonsense.
 Big hugs to you,
Cheryl51
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Posted By: Sunday22
Date Posted: Aug 15 2009 at 8:13am
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Am I a long term survivor?
First dx in 2005. Second dx in 2009. |
Posted By: trip2
Date Posted: Aug 15 2009 at 10:43am
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Hi Sunday 22.
I am like you and had it come back. I was told you have to start counting all over again. I am sorry, I know this is aggrivating but your years will soon accumulate again. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Aug 15 2009 at 10:46am
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Cheryl,
That fits her personality to a T. lol ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sunday22
Date Posted: Aug 15 2009 at 11:40am
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I thought as long as you were alive you were a survivor.
I had a friend who battled the disease for 7 years. There was never a time when she was not on some kind of treatment. I think she was a survivor for 7 years. |
Posted By: trip2
Date Posted: Aug 16 2009 at 10:02am
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Sunday your friend was a survivor and you are a survivor if you choose to use that word.
There is a debate over using that word. Some are not comfortable using it but if you do then so be it, that is fine!
What I meant was that you, like I had it come back and since they (docs) usually go by diagnosis date, then we would have to start over with our counting of years.
It is admirable you have had bc twice and still NED. Me too, we both were diagnosed and had it come back in about the same amount of years and as long as my feet are on this earth then I am keeping the monster at bay.
A relative had bought me a pink survivor ribbon which I kept on my truck but when it came back, maybe out of anger I took it off. Felt like it hexed me but that is me. We all have our own angle. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: paula
Date Posted: Aug 23 2009 at 7:14am
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I'm a 5 year survivor, diagnosed Feb 2004, so far NED which is amazing since I was only able to have 2 FEC cycles. I can never have chemo again so I'm hoping they come up with something else should I reoccur. ------------- DX Feb 4, 2004 Lft NST IDC, 1.1 x 0.5 x 0.4 cm, Stage 1, GR 3, 1 of 17 nodes CEF 2 of 6 cycles 30 Rads w 6 boosts Regina, Sk Canada |
Posted By: trip2
Date Posted: Aug 23 2009 at 10:48am
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Congrats Paula! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: vdq7015
Date Posted: Aug 23 2009 at 1:27pm
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congrats paula!!! But you are 5 years and 6 mos cancer free. fantastic.
xoxo, vdq7015 ------------- tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006 |
Posted By: Sunday22
Date Posted: Aug 23 2009 at 1:55pm
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I met someone today who told me that surgery and chemo are not the only treatments I should be getting. He said that I should stay off sugar, fat, processed food and fast food. He also said I should look into taking curcumin and other things. I know. Sounds opinionated, right? But it got me to thinking. Those of you who are long term survivors in the way doctors define survivorship, did you embark on a new diet or exercise regime? In your opinion, is there anything that you thought might have contributed to your non-recurrence so far?
------------- Brenda 1st Dx 7/05 TN lumpectomy, chemo rads. 2nd dx 7/09 1st tumor ER+/PR-/Her2-; second tumor ER-/PR+/Her2-, bmx, immediate recon, T/C |
Posted By: Sunday22
Date Posted: Aug 23 2009 at 1:59pm
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Trip: Congrats on having NED. I presently have cancer inside my left breast. BMX on Sep. 2nd and chemo in October. ------------- Brenda 1st Dx 7/05 TN lumpectomy, chemo rads. 2nd dx 7/09 1st tumor ER+/PR-/Her2-; second tumor ER-/PR+/Her2-, bmx, immediate recon, T/C |
Posted By: kirby
Date Posted: Aug 23 2009 at 6:52pm
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Brenda,
I know changing diet and doing all that seems to be a popular mode. Especially for newly dx when the fear is still so high.
I haven't changed my lifestyle at all since my dx. Eating healthy is a regime I have always tried to follow and always needs improvement in my life. [ I guess that makes me a not so good practioner !]. I do love my sweets but try more from weight factor to stay away. I never eat fast food. Never have. I have always excersized although lack of energy after tx and then busyness of life, I don't think I do as much or work as hard at it as I used to. [ Maybe just age too !]. I do run a couple miles 5 mornings a week and try to hit the gym a minimum of 2 days per week for additional cardio and weights. I do read labels on my food. I eat only fresh fruits and vegetable but in Cal. that is pretty easy. I grow my own veggies during summer. I like cooking and rarely have processed foods.
I am not sure how well that may answer your question. I do have vit. D but am not always consistent with taking it. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Roxie
Date Posted: Aug 27 2009 at 9:28pm
| wow, someone else second guessing someone's doctor! where did you get your medical degree from? |
Posted By: Roxie
Date Posted: Aug 27 2009 at 9:30pm
| Do yourself a favor, ask your doctor, these people here think they are doctors, they will upset you and gave false information. |
Posted By: defeatbc
Date Posted: Nov 29 2009 at 3:45pm
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Hi TNBC Sisters. I am back from a long hiatus from this forum, and was sad to see this thread come to an abrupt halt. Long term survivors of TNBC have always been my best source for wisdom and courage. I have learned so much from you ladies. Please, please don't stop posting ("medical degree" or not!). Lets keep cheering each other on! I'll restart the cheers: My mother has been NED from TNBC since 1996. I aspire to be like her. -- Hoa aka defeatbc ------------- Dx 3/08 at 31 yrs. Stage 2, Grade 3, 1/13 Nodes, Bi-Mast adjuvant Taxotere & Carboplatin BRCA1- and BRCA2- Determined to grow old with my spouse and see my toddler son grow up! |
Posted By: 123Donna
Date Posted: Nov 29 2009 at 4:47pm
Congratulations on your mother's NED! It's wonderful to hear long time survivor stories. It give us so much hope. 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: kirby
Date Posted: Nov 29 2009 at 6:24pm
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I think survivors eventually move on, hence not so many posts. Or in my case, being dx before TN was named, it was only a fluke that I came across the name and this forum a few years ago. First it was curiosity about what I had been thru and what was happening now. Now it is mostly encouragement for those just starting this journey. Tx has changed quite a bit since my dx that I don't relate to so much of today's protocol. Which is another part of my encouragement ! I did have half of today's "gold standard" and I am still here. Hoping for positivity for all of you. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: unklez
Date Posted: Nov 29 2009 at 6:37pm
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Thanks Kirby. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: Annie M
Date Posted: Nov 29 2009 at 6:37pm
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Well, I'm not exactly a long time survivor, however when I had a recurrance in October, 2009, I was placed in a Phase III clinical trial that consists of Gemzar, Carboplatin and BSI 201 which is a PARP Inhibitor. The results, after the first cycle of two weeks of treatment with one week off, are phenomenal. The lymph node in which we found cells had gotten as big as a ping pong ball. It is like a pea now! Others in this trial have had similar or better results. Testing is done after the completion of the second cycle.
When a recurrance happens they give us a label of Stage IV. I choose to ignore that since i know this can be managed. I know several women who have Triple negative and have had recurrances and are fine. Going through chemo again is not exactly fun, but we are doing it and with great results.
So, I can't assure you that there will never be a recurrance, but, if it should happen, this particular approach seems to be excellent and is on the fast track with the FDA for approval.
I'm not sure where or how to list my information, but i was diagnosed in March, 2008. 2.5 cm, stage 2B, very agressive. in centinel node. 12 nodes removed. Lumpectomy, TAC for 18 weeks, Radiation for 7 weeks. Recurrance in October this year.
Annie M
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Posted By: unklez
Date Posted: Nov 29 2009 at 11:15pm
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Dear Annie, Thanks for sharing your positive experience with BSI 201. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: Annie M
Date Posted: Nov 30 2009 at 9:17am
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Right now there appear to be few side effects and great results. I'm so encouraged!
Ann
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Posted By: SusanE1104
Date Posted: Nov 30 2009 at 9:45am
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Dear Billie,
First let me say that I know how difficult this is for you. I supported two sisters through ovarian cancer, and I know that it is very difficult for us sisters.
Now, I want to tell you my experience with my own diagnosis back in Jan. of this year. I was so terrified, I really didn't want to know any details. My Reach to Recovery volunteer told me that I should find out all I could about my disease, but I just did not want to know! I couldn't handle it at that time. By April I was ready to find out more. It wasn't until then that I started asking my onc questions and found out I was triple negative. I found these web sites about that time too. Previously I was too frightened to look anything up on the net. I remember telling my daughter at one point, that I would ask questions as I was ready to hear answers. In other words, I didn't want her to ask anything I wasn't prepared to hear the answer to. So you might want to ask your sister's permission before you ask the onc questions.
I think my onc was sensitive to this because he didn't tell me anything until I asked. He did tell me I was stage IV after the first PET scan of course, but we didn't discuss triple negative and what that meant until later. I know everyone is different. Some want to know everything from the get go, and I would have thought I would be one of them, but I wasn't.
Take care of your sister AND yourself.
Good luck,
Susan
 ------------- Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin 8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
Posted By: tasoulla
Date Posted: Nov 30 2009 at 9:51am
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Hi Raine, What was diagnoses and how many nodes were affected in 1997 and what is the 2nd diagnosis? What treatment did you had in 1997 and what at the 2nd? I'm searching on behalf of my mum which has a triple negative and searching a lot round treatments. I wish you all the best and be always with smile!! |
Posted By: tasoulla
Date Posted: Nov 30 2009 at 10:23am
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Hi neicybroomer, how many lymph nodes were affected by cancer and how often were the cycles of your chemo? after chemo what kind of tests did you started and how often? my mother is having chemo now, and i'm searching a lot to help her as for the treatment and for the tests. i know you are worry a lot but you have to think positive and you will see that positive results are always will come in your life. the way we are thinking is affecting out lives. i wish you all the best and always think positive!!! |
Posted By: carbanner1
Date Posted: Dec 08 2009 at 2:15pm
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I come from a long family history of BRCA1 TNBC and only on mortality and that was because she chose not to treat. 8 women so far alive and thriving! Also all of those eight women went with lump ectomies no chemo at first and on re-occurrence they went all our with bi-lateral mastectomies and we have a range or 3 year survivor to 20+ years. They have children, grandchildren long full active and some less active lives but they are happy health women with lifetime to live. I am a BRCA1 (Gene Deletion 9 thru12) Stage 2b 1N, grade 3. Going thru Nonadjacent chemo and getting ready for a full mastectomy and hysterectomy. Yahoo, treatment 10 of 16 start tomorrow. I'm over the 1/2 way mark.
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Posted By: SusanE1104
Date Posted: Dec 08 2009 at 2:24pm
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Welcome, Carbanner1! What wonderful news you brought with you. May I ask if all eight of your family members were diagnosed early?
Susan ------------- Susan 62 1987 Stage 1 1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin 8/09 NED 12/09 liver mets Taxol/Avastin 4/10 liver mets 11/22 Parp Car/gem parp failed 2/2011 Ixempra |
Posted By: brandy
Date Posted: Dec 14 2009 at 12:06am
| I am also on the clinical trial for the PARP inhibitor. I was recently diagnosed with stage 4 tnbc. I am 28 years old and have two daughters 2 yrs old and 6 months old. I thought the lump in my breast was a clogged milk duct. i was just wondering how the parp is working? is it making you sick? |
Posted By: DisneyGirl1956
Date Posted: Dec 14 2009 at 12:21am
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I have had one round of the BSI-201 with no real side effects like I had on TAC this summer. I was a bit tired the 2nd day after treatment but recovered nicely so far. Where is your cancer other than your breast to put you at a stage 4. Have you started the PARP yet and were you chosen for the arm with the PARP to start with.
Pleas keep in touch. There are very few of us on this.
Patty ------------- dx June 2009 Stage 3C 6 rounds of TAC Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda |
Posted By: Annie M
Date Posted: Dec 14 2009 at 9:34am
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Patty,
I was stage 2B in spring, 2008. Had lumpectomy (left side), TAC and radiation. Had a recurrance in fall, 2009 and was selected for the PARP arm to start with. But even those who were not selected and only get the gemzar and carboplatin seem to be doing well, according to the doctors where i'm being treated. I just finished cycle two and have a CT this week. There is no doubt in my mind that this is being controlled and is reducing.
There is a node under my right arm, some bone activity, a small spot on my lung and there was more node activity which we believe is gone now.
Another interesting thing, for anyone who may have a recurrance in multiple sites is that I am told it is relatively easy to control in the bone. When it recurrs in major organs there is more concern. I have been told that I am a candidate for TomoTherapy for the lung if the PARP Inhibitor does not do the trick. That sure makes me feel even more positive.
Do keep me informed on your progress! I think we have lucked out on this treatment! I've heard of NOBODY who has not done well.
Ann
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Posted By: Kellyless
Date Posted: Dec 15 2009 at 2:26pm
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My grandmother had hormone + mets to the bone, diagnosed "terminal", and lived for another 17 years, to 81 years old. She was on the first trials of Tamoxophen, was treated at MD Anderson. I didn't spread beyond the bone in her arm until the last of those 17 years!
FYI - she wasn't my blood grandma, just the woman that raised my mom. ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: carbanner1
Date Posted: Dec 15 2009 at 4:08pm
| We have been diagnosed at many stages. I am the youngest and the earliest stage at stage 2B. |
Posted By: carbanner1
Date Posted: Dec 15 2009 at 4:20pm
| It's not rose everyday. We try out best to be positive but there are those days that sneak up on us and just get us down. You feel how ever you need to feel. One of these days you are slow but surely going to let it stay behind you and before long it will be a distant memory as you live a full and fun life. For all of us! |
Posted By: Terje
Date Posted: Dec 15 2009 at 5:47pm
The way I see this question is, "If someone is diagnosed today, what are their chances of surviving for how long?". If that someone is being diagnosed for the first time, then in this context, "survivor" means, "How long have you survived since your initial diagnosis?" Therefor I believe to correctly answer the question originally asked in this thread, one would not reset the clock when it comes back. I am convinced that if someone diagnosed today survives long enough, they will be cured because technology is advancing at an exponential rate. |