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Anyone refuse chemo

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Topic: Anyone refuse chemo
Posted By: ElsaHope
Subject: Anyone refuse chemo
Date Posted: Dec 16 2017 at 6:53pm
newly diagnosed here, had surgery lump clear margin plus 3 nodes, all clear. Stage 1b. Grade 3
Want to refuse further treatment. Why if tumor removed, it still comes back, and reading other stories they did everything and still it was a crap shoot. I guess I am feeling chemo for TN is ineffective for most.
I'm looking for anyone else who said no. Thank you for reading.



Replies:
Posted By: 123Donna
Date Posted: Dec 16 2017 at 7:16pm
Hi Elsa,

What size was your tumor?  The NCCN Guidelines say for TNBC to consider chemotherapy if tumor was .5 cm to just under 1 cm.  And chemotherapy for any tumor 1 cm or larger.

Here's a link to the guidelines:

https://patients/guidelines/stage_i_ii_breast/index.html#48" rel="nofollow - https://patients/guidelines/stage_i_ii_breast/index.html#48


-------------
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: ElsaHope
Date Posted: Dec 16 2017 at 7:58pm
Tumor. 1.8cm. I read the guidelines and spoke met with oncologist x4. All "recommend" chemo, because there is nothing else they can offer TN. They all agreed 25% distant reaccursnce if no chemo, 15% with chemo. For 10% seams a little steap? To give up health. My worry is I do not want to make things worse, like get another cancer from treatment or do give up my health for something that I might not even need.
I am looking for ANYONE who has said no, and survived this.


Posted By: gordon15
Date Posted: Dec 16 2017 at 8:30pm
Elsa: I think you should think about it. You have no lymph nodes involved. A 10% reduction in possible reaccurance with chemo is a guess, at best.

 Ask them what the error- rate is, if it's 5%, well, that's worthy of the total consideration.


My wife has a possible heart problem, caused by chemo, or radiation,but she was a more advanced stage 3A , so it's a give-and-take , maybe take some time so you are happy with decision...

They're are members and readers here who declined chemo, that could bring some clarity, perhaps...


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: ElsaHope
Date Posted: Dec 16 2017 at 8:36pm
Error-rate? What does that mean?
All my dads family members died of heart problems.
Oh, I do hope someone will post soon.


Posted By: Kellyless
Date Posted: Dec 17 2017 at 10:33am
To say chemo doesn't do much for TN is hugely untrue. It's been the reason for many 1000's of women'survival. TN in your breast will not kill you. TN in any other part of your body most likely will. Most TN is very aggressive and fast growing. If there's undetectable by scan cancer cells anywhere in your body, chemo does a very good job of killing them. We are lucky that way, the more aggressive our TN cancer, the more effective chemo tends to be on it. does it suck that we are stuck with such a harsh treatment? Damn skippy it does... But I'm grateful for it, and I'd do it a third time to have a better chance of a long life with my family.
All of that said, it is 100% your choice. I'd say do the soul searching and ask yourself if you'll have regrets if next year it's spread after declining chemo. If you can be at peace with that then you've probably made the right choice for you. If it's just fear of the chemo side effects, speak with a mental health professional that specializes in cancer patients to work through your feelings. And get a second medical oncologist opinion. I got a lot of clarity with my second opinion doctors both times I was diagnosed. It's a huge horrible decision, seek all the professional help you can in making your decision. And then follow your gut! And please stay in touch here, whatever your decision we support you   

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: Carrie 4
Date Posted: Dec 17 2017 at 12:15pm
Hi , I was diagnosed with stage 3 A 31/2 year ago . Iím now stage 4 . Iíve done chemo twice now . This October I became NEAD ďNo Evidence of Disease ď I wouldnít be NEAD without chemo and it did work for me . Will it come back again ya maybe . I have a family to consider and I want to stay here as long as I can . Even stage 4 has treatment . I think women when diagnosed fear the chemo sometimes more then the cancer . Itís only hair and treatment is for a short time and if you donít do chemo at all to chase down the loose cells you certainly have a higher chance ending up like me .


Posted By: 123Donna
Date Posted: Dec 17 2017 at 1:25pm
Elsa,

I think it will be hard to find someone who refused chemo with a tumor your size.  The cutoff is usually at .5 cm.  You can search the forum for past discussions, but personally I can only think of maybe one or two people who refused chemo.  

I try to think of percentages this way, you'll either be 0% or 100%.  TNBC is more likely to travel through the lymph and vascular system than other types of breast cancer.  Chemo is used to try and catch those cells that may have gotten away.  There's no absolutes that it will work or won't work.  It's just the best choice we have at this time until they come up with targeted therapy.  Ask yourself, if you refuse chemo, how will you feel?  Will you worry you made the wrong decision?  If it returns, how will you feel?

I was given the same percentages as you the first time.  I did chemo and it returned.  I did more chemo with the recurrence and was no evidence of disease after 2 cycles.  I hated the thought of chemo and radiation, but given the choices, it was my only hope for a future.  Chemo can be effective against TNBC.

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: Lucky22
Date Posted: Dec 17 2017 at 2:48pm
Elsa - I know of one woman on another forum who started chemo but had a bad reaction and that was it. She has been ok for about 4 1/2 years. Node negative and her tumor was 1.5 centimeters


Posted By: ElsaHope
Date Posted: Dec 17 2017 at 2:56pm
123Donna,
Thank you for your reply and thinking about my case. I have to agree with you that it is 0% or 100%. One disturbing fact I learned is that chemo does nothing to cancer stem cells. And I just can not get over the fact that some woman do chemo and it still comes back. At the moment my soul questions to myself are, do I want to be sick waiting for it to come back or keep my health waiting for it to come back. I'm young, and have small kids so it makes this extreme difficult. I know if I had no littles I would not think twice to say "no thank you".
Are those that you know who skipped chemo alive?


Posted By: Lucky22
Date Posted: Dec 17 2017 at 3:03pm
Elsa- my last chemo is this week, finishing 20 weeks. Obviously, it wasnít fun and it could be hard, but it was definitely doable. I went camping three times and a week long trip to Universal Studios all during chemo. Once you start treatment you just do it. I have two boys and the thought of not doing everything within my power to be here for them as long as possible is my motivation to do all I can.


Posted By: Penny
Date Posted: Dec 18 2017 at 12:37pm
Chiming in on this.  I would 100% do chemo/radiation over again.  I finished in June 2017 with my treatment and I was diagnosed one year ago (Dec 7, 2016). It was scary for sure.  I do not regret the chemo at all.  It is very doable.  I pray I don't have to face it again, but if I do I will sign up for chemo again.  I hope this helps.  

Penny 


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DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.



Posted By: 1279561
Date Posted: Dec 18 2017 at 2:31pm
My mother was diagnose with TNBC Aug 2011.  She did lumpectomy and after researching more into tnbc, decided to refuse chemo/rads.  All blood work/scans that she has had since have come back clear. 


Posted By: ElsaHope
Date Posted: Dec 18 2017 at 10:16pm
Wow, Thank you for sharing about your mom. These are stories I was hoping to find. May God keep her cancer free rest of her life. it's so hard to find anyone who did not do chemo with TN, I'm overwhelmed with information that doesn't make sense.


Posted By: ElsaHope
Date Posted: Dec 18 2017 at 10:18pm
lucky22, thank you for chimming in. You are so brave, I don't think I have it in me for such strength.


Posted By: ElsaHope
Date Posted: Dec 18 2017 at 10:22pm
Penny, what type of chemo did you do? They want to have me do dose dense AC-T. I can't, after reading about it, I can not sleep or eat or think or anything, how for stage 1 such harsh treatment.


Posted By: Kellyless
Date Posted: Dec 18 2017 at 11:26pm
The majority of the long term survivors here did the exact same treatment they're prescribing for you. I worked straight thru my treatment, took care of my family most of the time as well. It was a blip in my life, because I know it got me to here, to today. I saw my son finish grade school, go to college. My daughter graduated college, she's thinking of making me a grandma. My husband and I are restoring our dream house, building our forever empty nest and having the time of our lives. I've not a single regret - just grateful that science had progressed to know the difference of TNBC, and a treatment was available to save me. It wasn't that far back that we were treated the same as all the other breast cancers...and we were those puzzling cases with bad outcomes.
My mother chose to forgo treatment for her breast cancer....It was 2008 and she wasn't young but I still...I'm haunted that she didn't fight to stay with us longer. It still breaks my heart. So yeah, I'm biased. When I hear of a mom with cancer I always want to say, fight for your kids mom if you don't feel like fighting for yourself! Do it for your kids mom, they need their mom, or at least to know she fought to stay with them!
But yeah, I'm biased...

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: rstar
Date Posted: Dec 19 2017 at 3:59am
Hi there,

Ask them about CMF. It's a lighter chemo regimen


Posted By: Penny
Date Posted: Dec 19 2017 at 10:40am
With my small tumor size (.6) it just pushed me over the line to get chemo/RADS.  I had TC.  I know it's scary but so many people have gone through this successfully.  I would recommend getting a second opinion and listen to what the oncologist says.  Ultimately it is your choice.  I am risk adverse and was petrified.  I am through all the treatment and very glad about my decision to have the treatments.  I wanted the best chance to be here long term and for me it was.  You are at the hardest part now, waiting and worried.  Once you have made a decision and have a solid plan, it truly get's easier.  I hope this helped.

God Bless you, 

Penny 


-------------
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.



Posted By: Lucky22
Date Posted: Dec 19 2017 at 2:19pm
Elsa - if you do opt out of chemo, would you get radiation?


Posted By: ElsaHope
Date Posted: Dec 19 2017 at 2:59pm
Lucky,
No, oncologist are suggesting to avoid radiation due to my braca gene.


Posted By: mainsailset
Date Posted: Dec 19 2017 at 7:58pm
Reading all these thoughtful replies it occurs to me once again (some days I wish I could erase all my Tneg memories and brain cells) that we all have to consider that there are 9 subtypes of Tneg (at least) and among that group there are differing chemos that work or don't. So even if a dozen people replied to tell you they opted out of chemo and were still here to tell their story, they really wouldn't be giving you the whole story because there's a good chance they didn't have the same sub type that you have.

When I first asked the same question as you, I had a very frank conversation with a member here named Connie who told me...Tneg is wicked smart, it's aggressive and it will go all out to getcha. You can't deny yourself every single opportunity you're given to fight back. Most of us don't get 2nd chances on Tneg, if it comes back it generally goes beyond your breast to an organ and so very much harder to fight. Then she said, when you're offered chemo ask them to throw the kitchen sink at you, don't back off.

I've remembered Connie's words for a long time. I did choose to throw the kitchen sink at tumor, going for a clinical trial. Then I followed up with a dbl mast and radiation. All during my treatment Connie kept coaching me to keep at it. I think she got great satisfaction out of encouraging women to fight. You see, Connie didn't make it, she didn't have access to the treatment that's around today. Treatments have come so far in a very short time period and women today that are faced with Tneg have better chances of complete remission than at any other time. I, for one, am truly hopeful that you won't decline the chemo but will give it a go.

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: ElsaHope
Date Posted: Dec 20 2017 at 12:01pm
Thank you for your thoughts and reading my question. I am not getting much responses from anyone who has said no, and it makes me even more nervous and stressed about my decision. Did Connie not have chemo?, I am so sorry she is no longer with us.
I am so afraid to throw the kitchen sink at it because I have a braca gene and am very worried doing chemo may create mutations or make it worse. My oncologist already seams to think that radiation is not a good idea for me because of the gene. This is SOOO hard, I have physical ringing in my ears from all my brain is trying to understan.


Posted By: mainsailset
Date Posted: Dec 20 2017 at 12:41pm
I seem to remember that the box of time before my team and I came up with a plan was by far the most stressful. It didn't seem like the answers arrived and I had to dig for every single piece of information.

Connie had chemo, but back in '09 there weren't that many choices of what to do if it came back, nor did we know that there were actually 9 subtypes that reacted differently to different chemos. She could not access some of the trials or the drugs that were new to the market. Her wonderful onc took a job elsewhere to do research and was not there to fight for her. It was very very sad.

If you take the time to look at postings here, you will probably see that often women are, what I call, 'under treated', particularly when their tumor is small. There seems to be some kind of assumption that a small tumor just won't be as deadly as a big tumor. It's a personal thing I have that I want to argue about because I resent seeing women here who have a recurrence likely because they did not get advice to be aggressive in their choice of treatment. (sorry for rant, but I don't want to lose another member of this family).

There is a definitive reason to have chemo, to have surgery & to have radiation. Early stage (where you're at now) is night and day different in its ability to be treated than if you have a recurrence. The BRCA is something that wasn't even an issue when I had treatment, in fact when Connie brought up a test and I asked, I was declined.

What helped me in making my decisions was to go and get a 2nd opinion. I know it sounds like the opposite of how you want to spend your energy right now but 2nd opinions are wonderful, you will learn something, it will settle your anxiety and give you purpose. I don't know where you are but perhaps if you tell us, someone here can give us the name of a Tneg specialist in your area. Also, your own onc will not be upset if you just ask him/her for the name of a Tneg specialist to refer you to.

Remember to get copies of all your medical information in paper form every time you see a medical professional, put them in a 3 ring binder, read them and study them. Get to know what they say because I can say from first hand knowledge that every once in awhile medical staff screw up and you want to be able to hand them a copy of work done and say, 'no' or 'yes'.

Also, don't think that you have to know everything. Instead of saying, 'I don't know all the questions to ask' maybe start with I want 2 or 3 options, I want to know my quality of life, I want to know what not to do.

I'm so glad you posted, I hope this helps.
   Mainy

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: Kellyless
Date Posted: Dec 20 2017 at 2:49pm
Mainy you're once again able to communicate what so many of us are feeling and thinking about her awful struggle. There have been so many women come here the last nine years facing stage 4 TNBC from obvious poor medical care, especially the young women. It's What keeps many of us survivors coming back, our fight to get the word out about the differences in our disease, and the life saving options available. it's what keeps our guardian angel Steve working desperately around the world helping women with TNBC. My suggestion is that you contact Steve, Elsa. He found out he carries the gene when his daughter was diagnosed with TNBC at around 30 years old. Hes a volunteer patient advocate and has helped so many people, especially women with this disease IN the years since. My husband and I know that he saved my life last year when I had a reccurence. he got me an appointment with one of the best doctors in the world at MD Anderson, which I never wouldve been able to obtain without him. he was even at MDA for most of my appointments. Second options save more lives than any one treatment ever has. I've never heard of anyone that regrets getting a second opinion. Steve is listed as Sage Patient Advocate here in the board. Please at least contact him and have a chat. Information IS power!

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: mainsailset
Date Posted: Dec 20 2017 at 4:35pm
Thank you for kind words Kellyless. I'm so glad to hear that Steve was able to intervene for you so you could get the best care. Wishing you and yours the very best Christmas this year!


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: 123Donna
Date Posted: Dec 20 2017 at 10:20pm
Elsa,

Connie was a very wise person who greeted me and helped me when I was first diagnosed and going through treatment in 2009.  What I've learned through the years is that TNBC is aggressive, doesn't play by the normal rules, some smaller tumors are more aggressive than larger tumors.  We have one member, who was dx stage 4 at the initial diagnosis with only a 1 cm tumor.

I've shared my story, but will tell it again so others can understand how unpredictable TNBC is.  I was dx with a small tumor, stage 1, 1.5 cm, bilateral mastectomy with good margins, clear nodes (0 out of 5).  My KI-67 % was 48%.  By all of these statistics, you'd think my odds were very good.  I still did chemo even though it scared the *@#) out of me.  My odds with chemo gave me about a 12%/13% recurrence rate.  So I had an 87% chance of being cancer free.  

Fast forward about 13 months after finishing chemo.  I'm feeling great, no symptoms, all blood work, tumor markers normal.  My onc orders a routine scan and we find a recurrence to the internal mammary nodes (regional nodes under sternum).  The consensus is those cells had escaped the original tumor by the time of diagnosis but were too few to be detected by the breast MRI.  TNBC is more likely to travel through the lymphatic and vascular system than other types of bc.  Also, did you know that not all tumors drain to the sentinel node(s)?  Most do - about 96%.  I happened to be one of the 4% whose tumors drained to other nodes.

I hope my story doesn't scare you or cause you more anxiety.  I just feel that you should know all the facts to help you make the best decision for you.  Please reach out to Steve and talk to him.  He's helped so many of us.

PS:  Are you taking anything for the anxiety?  Many oncs will prescribe something like Ativan to help during this stressful time.  

Hugs,
Donna




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Kellyless
Date Posted: Dec 21 2017 at 9:11am
I miss Connie :( I should add, even though I've watched Steve help countless people here all these years, I was shy to reach out to him when I had my recurrence last year. I did contact Donna and Mainy via private message and they both encouraged me to reach out to him. So once again, these women and this community changed a life - mine. If you're lurking out there folks, you are not alone! And Elsa, we are here for you No matter what you decide is right for you.
Kelly

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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: ElsaHope
Date Posted: Dec 21 2017 at 1:23pm
I am greatful for the conversation here with you, creates question for my oncologist that I am going to see again. I have seen 4 different oncologist here in Oregon, and all seam to follow the guidelines of over 1cm they have to recommend chemo. The rest is up to me, and believe me I have been asking questions at my visits with them which for some it seams it annoys them especially when I ask about nutrition or what are my other options. I got 4 second opinions but they seam with same information that there is still not much known about Triple Negative so they give us what they got and in my case because I am young ACT is what they all liked to suggest, Carboplatin was in conversation but they said that it gives great neuropathy and they worry that might not be good for me. But I can choose that way if I want to,... So it seams it's basically up to me to choose and research as you can I am doing and reading and the more I am "lurking, reading others stories" on here and breast cancer.org the more I see that just like Mainy said it could be nine different people and it will still not be same as me. I am feeling discouraged.
I see soooo many who did everything in their stage 1 setting throwing the sink at it, and then it still comes back, doesn't that say something about Chemo having NO effect on this beast TN?? It even makes me really question if chemo is actually responsible for these reaccursnce that happen in distant organs by mutating things, this is my question number one for my next visit with oncologist after Holidays, I have actually asked asked that to one and he said, no but we don't know enough urgh.
Here are my current thoughts, I have good mental and physical health, and if I do chemo bases on what I am reading that will be severely disturbed. I do not want to become the next American depended on anxiety and Anti depression medication and seams like that also in line for most after they complete chemo. I am not rich and do not have best insurance to travel around for best oncologist who is still going to follow guidelines or to deal with all the side effects that chemo seams to cause long term like heart problems that were mentioned, Nurapathy etc. And if it comes back anyway, wouldn't it make more sense to researve chemo option for then. And last inside I just can not get over giving up health for just in case, and "we don't knows" and 8-10% when honestly it seams again from lurking and reading that if its meant to come back it does anyway no matter what one does. My heart is so broken right now. I feel as if I've become a fish that keeps beating it's live tail on shore. I guess I have to come to terms with we all have to pass on one day anyway and who is to say we are all going to be 90 plus when we do. I mean just two days ago 6 people died in a train ride. I guess I just am not okay with making myself sick by my own signature to except poison. if it happens then it will not be by me but what life had in store for me.
I am in Oregon by the way.
Thank you again for reading my all over the places worries am I so sorry for all of us especially who have lost their life to cancer, any cancer.


Posted By: 123Donna
Date Posted: Dec 21 2017 at 9:29pm
Elsa,

I hope you know that we will stand beside you no matter what path you choose.  Please continue to post and share your thoughts.  This forum was my sanity.  I don't think I would have made it if not for the wonderful women (and men) in this group.  They understood like no one else could and were so calm and patient when I asked continuous questions.  

Hugs,
Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Kellyless
Date Posted: Dec 22 2017 at 1:36am
The majority of women that have come thru here in the last 9 years - 100s or 1000s or them, survived. This is far from a death sentence. Very few had serious complications from treatment, or lasting effects from the chemo that saved them. With chemo recurrence is not common either. We have had many, many trials on our typical treatment plan that have proven scientifically that the treatment works, it's saved 100,000s of lives. Please hear everyone when they tell you that you are in the absolute worst part of treatment. this time when you have to make decisions is fraught with anxiety. The thought Of DOing chemo is petrifying! This IS the worst time for you. If you do chemo the reality is not anywhere near as bad as the anticipation. And its all over quite quickly - we Are lucky that way At least, our treatment plans are quick compared to other cancers.
In hindsight it's just a blip in my life, even doing it twice was just a blip. I've taken no medication post treatment either time. No anti anxiety or anti depressants - only vitamins.
I'll try one more time to ask you to please talk to Steve. Hes personally known and helped many many cancer patients, especially BRCA positive ones. His whole family has had to deal with it. If anyone can give you peace of mind during this process it's him. And he will not ever tell you what you should do! At least give it some thought...
Whatever your decision going forward, I hope you can accept it and banish the thoughts of it being a "death sentence" , not only because it's actually not, but because it's no way to live. You aren't stage 4, you caught this in time to cure it. This will all be behind you - you are done if you refuse treatment, by summer of you choose to accept the treatment - either way, this will not take up that much more of your life
keep bringing your thoughts and feelings here, it really does help. Most people in our lives cannot grasp how huge and overwhelming this is. It was a huge blessing to have this community to come to, to say out loud my thoughts and feelings and fears. Without judgement, or ugh - pity. This place is _always_ a safe place to land.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: Lucky22
Date Posted: Dec 22 2017 at 8:16am
Elsa - I echo the sentiment that you are in the worst time - all caught up in your head. You have yourself having a recurrence before any treatment. The fact is the majority of women who receive treatment never have a recurrence.
Your doctors may seem frustrated but that is because they know the best course of action for you is the combo of chemo, surgery and maybe rads.
Please remember to that people tend to talk more about negative experiences than positive. Women go through treatment with some issues then go on and live life - they are usually not on forums unless theyíre the lovely ones who like calming down newbies!
I just finished 5 months of chemo. Yes, it was hard, but I truly feel good. Iím so excited to move on. I have a plan in place to lose the 5 pounds I gained and vacations to plan. Moving on to rads with a great attitude.

I truly wish you the best. Youíve got the information and many medical opinions and now you need to decide. I know itís hard - do what you feel is best for you, your family and your future.


Posted By: mainsailset
Date Posted: Dec 22 2017 at 9:09am
ElsaHope...I'm going to be blunt about one thing. You mention that you might hold chemo out in case of a recurrence. That's not how recurrences work and could prove very dangerous for your health.

The reason I originally mentioned 'kitchen sink' is because when dealing with Tneg it's best to give it your best shot the first round because fighting through a recurrence is dicey.

Btw, since you're in Oregon, my original Onc has moved there. He's in Portland and I'm sure you can google to find him. His name is Robert Raisch. He is kind & thoughtful and willing to answer questions as well as being top notch.

Please remember that just as your doctors are leaving things up to you now, it is also your option to opt out of a particular treatment at any time. Not generally advisable, as it's best to stick with it, but you do have that extra control.

Also, most clinics have a social worker attached to the office. It's worthwhile to spend some time with the social worker because they can line you up with various kinds of financial help...everything from someone to help drive you to appointments, to cleaning your house, figuring out billing & financial help.

I googled Dr. Raisch for you
http://www.legacyhealth.org/providers/robert-raish.aspx" rel="nofollow - http://www.legacyhealth.org/providers/robert-raish.aspx

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: 123Donna
Date Posted: Dec 22 2017 at 12:05pm
Elsa,

Chemo definitely works!  Seven years ago when I was diagnosed with my recurrence to the internal mammary nodes, surgery was not an option to remove them.  These nodes are under the sternum in your chest and require major surgery, which was not an option as we needed to start chemo right away.  So my only treatment choices were chemo and radiation.  I wasn't holding out much hope that it would work without surgery, but it did.  I had a scan after 2 cycles and was No Evidence of Disease.  We continued 2 more rounds of treatment and then on to aggressive radiation to mop up any remaining cells that may be lingering around. 

When Mainy talks about throwing the kitchen sink at it, this is exactly what my onc suggested.  She found a clinical trial, Carboplatin, Gemzar and Iniparib, where I received treatment twice a week for two weeks then, off a week.  They then recommended IMRT radiation, 40 treatments to hit all possible regional nodes.  I thank this onc every day for saving my life.  She had a plan, an aggressive one, and because of it, I'm still here 7 years later with no evidence of disease.

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: mainsailset
Date Posted: Dec 22 2017 at 1:54pm
I think of Donna's story often whenever I hear questions about treatment of small tumors. The assumption that a smaller tumor can create less danger than a bigger tumor and hence a lighter choice of treatments worries me. Donna's case was complicated but I always think we should look at every case as complicated!

I'm having a hard time understanding oncs that would not encourage you to have radiation because of a BRCA gene, but then they're the doctors and all I have is an opinion.

Last thought, radiation therapy has made great strides since I had mine. There are now studies out that have investigated radiation of just the area where the cancer cells were as well as studies that are not the standard 6 weeks. If having less radiation is something you would be interested in perhaps your doctors could give you their opinion on the newer strategies.

Please please please understand that your first round of fighting Tneg is your strongest.

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: susanb
Date Posted: Dec 23 2017 at 6:19pm
I had a small stage 1 tumor dx in 2006. I threw the kitchen sink at it because this disease killed both my mother and her mother, both at very young ages. I am most likely BRCA positive (I'm an Ashkenazi Jew) but I've never had the testing as that I followed the treatment protocols for it at the time. Bilateral mastectomy and AC chemo. Chemo was rough and I didn't cope well but I would do it again if I had to. Because it worked. 12 years out this spring. 

-------------
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.


Posted By: atlhoosier
Date Posted: Dec 29 2017 at 2:35am
HI Carrie, are you still on treatment, even though you are NEAD?  I am now stage 4, going through treatment, and striving for NEAD!  My hope is to come off the chemo when that happens.  How did your doctor determine that you are NEAD?  Is it completely gone, or just stable?  I've been back on treatment since the end of June, and the tumor in my lung has shrunk by 30% but at the last scan only showed stable (no shrinking).  What treatment were you most recently on?

-------------
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)


Posted By: HopefulToday
Date Posted: Dec 30 2017 at 6:34pm
I was diagnosed with TNBC in November of 2016 had Lumpectomy in February of 2017. Didn't do Chemo. Within 3 months it was back and in lymph glads under my armpit. I did metronomic Chemo with Dr Ben Chue of Lifespring Cancer Treatment here in Seattle. It was NOT so bad - it was 12 weeks of Carboplatin and Taxel. I also did cold cap therapy and did not loose all my hair. (Only works with certain chemo from what I understand) TNBC is very aggressive and even the slightest cancer left in your body could spread it. Please consider chemo. I also recommend Dr Ben Chue, he has 30 years experience dealing with this. Good luck! Oh and I was stage 2A. Seem to be doing better this time after the chemo. 



Posted By: ElsaHope
Date Posted: Jan 01 2018 at 2:57pm
Metronomic Chemo? Were you a stage 2 when you got first diagnosed in November? I looked him up, Seattle is close enough to drive up for conversation, thank you for sharing. The time has come to make decisions for me and I am still overwhelmed and afraid. It's hard to accept that I need to get sick in order to not be sick when I feel perfectly healthy.


Posted By: HopefulToday
Date Posted: Jan 01 2018 at 4:55pm
Elsa, 

I'm certainly not a doctor SO please ask questions about  chemo and radiation and the order they should be done. What happens if you do radiation first. From what I understand it is very difficult to go back and do chemo after radiation.   

I believe in my body, the TNBC spread REALLY quickly. I was diagnosed at stage 2A but that's just a label. I found that after having cancers removed from my breast and lymph (after it had spread) the sizes were not exactly what they were on the scans or MRIs. 

I have never felt sick because of the cancer but I assure you, I have had breast cancer and it took me 3 months to come to terms. I don't know if in those 3 months it spread to my lymph glands but it did and I have now had 20 removed from under my arm -trying to stay ahead of it. I have also had a double mastectomy.  

Metronomic Chemo is smaller doses of the chemo but with no break in-between. I had it for 12 weeks straight. Part of the theory is that it doesn't give the cancer a chance to become resistant to the chemo. 

I would think anyone who has cancer is afraid but please consider talking to Dr Chue or another Dr about chemo. I didn't believe it when I was diagnosed either but I do now. As much as I hate the idea of the chemo I do believe it may have stopped this from spreading more in my body. Honestly, I saw 6 oncologists before I went with Dr Chue - I kept trying to find someone who would tell me I didn't need chemo. I went with him because he offered me a type of chemo I believed in after researching. We are all going to deal with cancer in our own way but I believe it's very important not to waste precious time, to do research, as well as, be your own advocate. 

I never felt sick from the chemo, it just made me kinda light headed and a little dizzy. Dr Chue was with me every step of the way offering medications to counter the side effects. He will listen to your concerns and hold your hand through the process should you decide. 

BTW, I did Carboplatin and did not have any neuropathy. I'm sure everyone reacts differently and there are no guarantees but I was monitored well. 








Posted By: Kellyless
Date Posted: Jan 03 2018 at 12:28am
The term "aggressive" means fast growing and fast spreading. Its a cancer that rapidly grows And rapidly spreads. The smartest Scientists in the world are searching for alternatives to chemo, but as of now its still what all these same scientists say is what stops and kills this disease. NOBODY wants to do chemo, but read nothing but scientific works on TNBC Treatments for a week and you know thats the truth. Changing your diet will not stop existing TNBC from spreading, nor will vitamins, excercise, meditation or massages. It's an aggressive, fast growing, fast spreading cancer. In your breast it does not make you sick or kill you. If you catch it in your breast YAY! You have a chance to kill it and stop the spread, and survive. Act fast, as fast as medically possible, because remember it spreads and fast. Beyond your breast and adjacent lymph nodes it makes you sick - as in "I feel sick, I'm in pain" sick, and it's very, Very hard to beat once it's spread. These are the realities of it. Ask 3 or 10 or 1568 breast oncologists and they will all say the same basic thing about treating our disease - chemo is your best chance of survival. Full Stop, that's it. The questions are what chemos, what else to add to chemo treatments, what surgeries, etc., But honestly? No responsible Dr. is going to say sure, skip chemo, eat heathy, snort turmeric, hit the gym and you'll be fine. You can certainly choose to forgo chemo, but no doctor is going to agree that's a good decision. If you want to talk about "eating right", see the nutritionist that works with the cancer patients. Your oncologists job is to cure cancer, she can't do that telling what to eat, so yeah - she's not to psyched you're making appointments but don't want to discuss medicine but chat about food.
Radiation should always be after all your surgeries are over. I had surgical complications this time because of 8 year old radiation damage. It was no fun at all.

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: 123Donna
Date Posted: Jan 03 2018 at 8:08am
Kelly,

I agree with your comment 100%.  Eating well and taking care of our bodies should always be our goal to be healthier, but it won't kill cancer, especially something as aggressive as TNBC.  One of the best comments from my oncologist that I still remember when asking her about this - she said it's like trying to stop a steam roller with a thumbtack.  

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: 123Donna
Date Posted: Jan 03 2018 at 8:12am
Please read this thread:

http://forum.tnbcfoundation.org/dont-delay-chemo_topic11759.html" rel="nofollow - http://forum.tnbcfoundation.org/dont-delay-chemo_topic11759.html

Breast Cancer: Don't Delay Chemo

Delaying adjuvant chemotherapy for breast cancer more than 60 days significantly increased the odds of premature death and distant metastasis, a review of almost 7,000 cases showed.

As compared with starting adjuvant therapy within 30 days of surgery, initiating chemotherapy at 61 days or later was associated with a 19% increase in the risk of premature death. In the subgroup of patients with stage III disease, the mortality risk increased by 76%. Relapse-free survival (RFS) and distant relapse-free survival (DRFS) worsened regardless of stage at diagnosis, according to  http://faculty.mdanderson.org/Mariana_ChavezMacGregor/Default.asp" rel="nofollow - Mariana Chavez-MacGregor, MD , of the University of Texas MD Anderson Cancer Center in Houston, and colleagues.

Patients with high-risk breast cancer (triple negative, HER2-positive, or stage III) seemed most susceptible to the adverse effects of delayed chemotherapy, as reported online in the http://jco.ascopubs.org/content/early/recent?home-right" rel="nofollow - "The adverse outcomes occurred when chemotherapy was delayed ≥61 days, which in most circumstances, gives medical oncologists enough time to initiate adjuvant chemotherapy," the authors concluded.

"Among patients with stage II and III breast cancer, triple-negative breast cancer, and HER2-positive tumors, every effort should be made to avoid postponing initiation of adjuvant chemotherapy. This may lead to an improvement in outcomes for these subsets of patients."


Delaying chemotherapy in breast cancer patients reduces overall survival, especially for those with triple-negative breast cancer


Postponing the start of adjuvant chemotherapy for more than 90 days following surgery may significantly increase risk of death for breast cancer patients, particularly those with triple-negative breast cancer (TNBC), according to a new study from The University of Texas MD Anderson Cancer Center. Further, the researchers found that factors such as socio-economic status, insurance coverage and ethnicity were associated with delayed treatment.

According to the study, published in JAMA Oncology, patients who start chemotherapy more than 90 days after surgery are 34 percent more likely to die within five years. Patients with TNBC who delay treatment have a 53 percent increased risk of death.



-------------
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: mainsailset
Date Posted: Jan 03 2018 at 6:40pm
Donna, now I'm going to remember your onc's comment..."It's like trying to stop a steamroller with a tack" !

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: gordon15
Date Posted: Jan 04 2018 at 7:00pm
There is a legitimate situation in which to consider refusing chemo, and that is DCIS/Stage 1, no lymph nodes involved.
There are books written about Stage 1, DCIS (not IDC) with no lymph nodes involved, obviously, because the cancer has not gone outside the duct, where doctors are recommending all sorts of possibly unsubstantiated therapies,

not sure if this includes TNBC, all I know is TNBC is not normally confined to DCIS, I believe, it is usually progressed to IDC...but there are countless articles on this early stage...and how the pharma industry got it re-classified.

They actually did NOT call DCIS cancer, it was called "pre-cancer" until the chemo-pharma-industry got DCIS re-classified as "cancer"

Like I said, this is probably not appropriate for a TNBC/Stage 1/ no lymph nodes invloved, perhaps TNBC requires a more aggressive therapy.



-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: 123Donna
Date Posted: Jan 04 2018 at 7:20pm
Gordon,

I agree with much of what you say, but wanted to clarify.  DCIS and LCIS is actually Stage 0.  Usually Stage 0 is grade 1.  
Most TNBC when diagnosed is grade 3 (fast growing).  

https://www.nccn.org/patients/guidelines/stage_0_breast/index.html#" rel="nofollow - https://www.nccn.org/patients/guidelines/stage_0_breast/index.html#

Stage 1 are tumors 2 cm or smaller and have not spread to the lymph nodes.  Most women at this stage have a grade 3 tumor.  I've only seen a few women, with very small tumors that were grade 2.  I don't believe I've ever seen anyone post on this forum who was Stage 0 or grade 1.  

Here's a link to Stage 1 and 2 breast cancers:

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#" rel="nofollow - https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#






-------------
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: gordon15
Date Posted: Jan 04 2018 at 7:21pm
Sorry, I meant Stage 0, not 1, thank you


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: TNBC NC
Date Posted: Jan 19 2018 at 4:00pm
Hi,
I am not sure if this thread is still rolling active, but I refused Chemo.  I had the Lumpectomy and 11 lymph nodes removed.  Cancer was in 2 or 3 of them.  The tried to get me to do chemo, radiation and actually have both breast removed.  I refused

I have a recurrence 18 months later that Metastasized to my liver, another lymph node plus now suspicion on spine,  I hate typing this. I don't want to feed it any energy

TNBC is not your regular BC.   I did 42 Chemo treatments in 12 months.  It was working for a while, the tumor in my liver reduced itself 70%, then it stopped working

I am now on my second clinical trial, praying it will work.  The first clinical trial didn't

FOLLOW YOUR DOCTOR'S INSTRUCTIONS.   Get 2 opinions, but don't play with this.  This is definitely a different monster.

My sister got the same disease a year later,  she did everything the doctor told her to do and she is not doing fine!  Absolutely no issues at all!


Posted By: Kellyless
Date Posted: Jan 19 2018 at 4:42pm
Thank you for sharing your experience with us TNBC NC, and I'm so very sorry you've been thru all of this. What a terrifying, exhausting time you've had! I do understand not wanting to write, talk etc., That feeling that it's "feeding the beast", I was in that space last year. You coming here and doing it anyway will change lives - save lives - and that's a very brave and selfless thing. Seriously, thank you!
Now - what can we do for you? Is there a doctor or institution you'd like to get in to? clinical trials you'd like more information on? You have our prayers and our gratitude, please let us know if there's _anything_ we can offer to try and help.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: mainsailset
Date Posted: Jan 19 2018 at 5:17pm
Ditto Kellyless, is there anything we can do to help you out?

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: 123Donna
Date Posted: Jan 19 2018 at 6:08pm
TNBC NC,

Ditto what Kellyless and Mainsailset.  It took such courage to share your story.  I truly believe that TNBC is unpredictable, doesn't play by the rules and we should attack it with the big guns.

What can we help you with?  We have lots of warriors who are willing to research clinical trials and other sources for you.  Just let us know.  You are not alone!

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: TNBC NC
Date Posted: Jan 22 2018 at 1:51pm
Kellyless,
Thank you for the reply.  Yes I am seriously interested in a clinical trial that I can explore and have ready ASAP in this one doesn't.  I just received word 10 minutes before typing this text that my Sister-In-Law lost her battle.  She actually had bladder cancer.
My doctor is aware I am exploring other available trials. Please check avenues I can research and contact.

Thank you very much!


Posted By: gordon15
Date Posted: Jan 22 2018 at 8:00pm
Thank you for your story. My wife has had lots of chemo, in 2008 and 2016, but it killed the cancer, hopefully anyone reading this can have a PET scan, according to any insurance, because it shows possible cancer cells growing.

-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: 123Donna
Date Posted: Jan 22 2018 at 8:52pm
TNBC NC,

Are you being treated at Lineberger Comprehensive Cancer Center
Chapel Hill?  Have you been tested for the BRCA mutation or other breast cancer genes?

Here's a link to metastatic TNBC clinical trials.

https://clinicaltrials.gov/ct2/results?cond=MEtastatic+Triple+Negative+Breast+Cancer&cntry=US&recrs=a&age_v=&gndr=Female&type=&rslt=&Search=Apply" rel="nofollow - https://clinicaltrials.gov/ct2/results?cond=MEtastatic+Triple+Negative+Breast+Cancer&cntry=US&recrs=a&age_v=&gndr=Female&type=&rslt=&Search=Apply

Here's a link to metastatic clinical TNBC trials in North Carolina only:

https://clinicaltrials.gov/ct2/results?recrs=a&cond=MEtastatic+Triple+Negative+Breast+Cancer&cntry=US&state=US%3ANC&gndr=Female&phase=0123&map_state=US%3ANC" rel="nofollow - https://clinicaltrials.gov/ct2/results?recrs=a&cond=MEtastatic+Triple+Negative+Breast+Cancer&cntry=US&state=US%3ANC&gndr=Female&phase=0123&map_state=US%3ANC




-------------
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: TNBC NC
Date Posted: Jan 24 2018 at 1:51pm
I got it 123Donna! Thank you very much!!

Is there a forum on this site where TNBC Patients are discussing Clinical Trials? 


Posted By: TNBC NC
Date Posted: Jan 24 2018 at 2:01pm
123 Donna,

No I am being treated at Carolina Bio-Oncology Center located in Huntersville, NC


Posted By: mainsailset
Date Posted: Jan 24 2018 at 4:11pm
Hi TNBC NC, we've had lots of threads here about clinical trials, you may find good info in the search 'archive' section. I was on a clinical trial and am pretty darn sure it saved my life.

You can google "Clinical Trials" and a website for NIH will pop up where you can put Triple Negative bc in their search engine. Lots will come up.

Please note that not all clinical trials are available to all clinics. That's important because maybe the ones that fit your situation might not be available to your doctor or even in your state. If you delve into the NIH search results generally at the bottom of each trial that is accepting patients it will note which clinics are offering the trial or it will give a contact number and email. Don't be afraid to email and ask questions, my experience is that they're generally very good about responding.

Good luck and please post any questions or any good information you find back here to share!!
Mainy

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: clifford1
Date Posted: Jan 24 2018 at 8:36pm
Hi,  I am sorry you are dealing with cancer.  I was diagnosed in May 2012.  Stage 1, Grade 3, 1.5cm tumor. No node involvement. I was diagnosed around the time Robin Roberts was diagnosed with MDS or myelodysplastic syndrome.  And, I know a few women who died after going through chemo and radiation or the cancer recurred soon after treatment.  Also, I know there are women who don't have problems after chemo and radiation. I had a double mastectomy.  I refused chemo after doing a lot of research.  I read medical peer reviewed articles from the New England Journal of Medicine and the Book, 'A World Without Cancer'.  Chemo is the standard treatment for tn.   Treatment is very individual and personal...there is no right or wrong treatment.  Also, all tn tumors are not the same.  There are 6 subtypes; and the research has not been done to ascertain which subtypes respond to chemo.  And, pathologist don't test for the different subtypes. Therefore, you have to do what makes you comfortable.  I have not had a recurrence and I will be 6 years out in May.  I try to eat a plant based diet, limited to no alcohol, and I take curcumin supplements sometimes. Also, I watch my weight. I cook with a lot of spices. And, I add tumeric and black pepper to my meals.  The bottom line for me was: I did a regret matrix.  If I had taken chemo and the cancer had returned, I would have regretted it because I chemo is toxic, success is unpredictable, and the side effects are brutal (short and long term).  And, I was not at Peace.  If the cancer comes back, I am okay because I have been healthy for 6 years, and I may have ended up at the same place either way.  I am not trying not to die...I am trying to live.  If you want to talk offline...inbox me.  Sending Peace in whatever decision you make.  Everyone's journey is different.




Posted By: TNBC NC
Date Posted: Jan 25 2018 at 7:25pm
Mainsailset and Clifford i really appreciate your reply. I had 42 Chemo treatments all using Taxol.  I had metastasis to the a new lymph node near the subject breast and Liver.  The Taxol did reduce the tumor 70% then it stopped working.  I started a clinical trial 2 weeks later, at which point several more small tumors grew in the liver during the interim waiting for the first Clinical trial.  First trial did not work   i'm on a second trial now.  i will know if its working in mid February.  i am aggressively seeking new trials  in case this one doesn't work
i just had an infusion yesterday.  Will type more.  Lately it seems to take all my energy to just type or text.

Yes i would love to connect offline. Please send request


Posted By: clifford1
Date Posted: Jan 25 2018 at 10:04pm
I forgot a very important point.  I asked my Onco to give me odds for survival with and without chemo.  There is a application called Adjuvantonline. Adjuvant online is a suite of online tools that is used by doctors and patients with early cancer to discuss the risks and benefits of getting additional therapy after surgery. The tools estimate the risk of negative outcomes (mortality or relapse) without systemic adjuvant therapy, and forecasts the reduction of these risks afforded by various therapy options.  Without chemo, I had a 75% chance of the cancer NOT coming back.  With chemo, the chances went up to, I think, 87%. Chemo would have given me a 12% gain, along with the other short term and long term chemo side effects.  My Onco explained the short term and long term chemo side effects in detail. Please understand that I totally understand the decision to hammer tnbc with chemo and radiation because it can be aggressive. I am simply sharing my journey.


Posted By: TNBC NC
Date Posted: Jan 31 2018 at 4:02pm
Thank you very much for the info and the reply


Posted By: susanb
Date Posted: Feb 05 2018 at 11:01am
The women that I know that refused chemo are dead or dying. Sorry to be a Debbie downer but that's the truth. Chemo sucks but it beats the alternative.


-------------
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.


Posted By: clifford1
Date Posted: Feb 21 2018 at 9:20pm
ElsaHope...Very eloquently written.  I personally know significantly more women who received chemo and rads who have died from tnbc than who have lived.  This may be because AA women may get the more aggressive subtype and the response to chemo is mixed.  I am so happy that most women in this Forum have had great success and have gotten past the 5 years milestone.  TNBC is complicated and complex and maybe there is not a one size fits all.  To suggests that a person is not fighting as much to live because she refuses chemo is interesting. The only thing that is certain when it comes to tnbc is....nothing is certain.  Maybe there is no wrong or right choice....not taking chemo for a 10 or 15% gain it just is a different approach that may or may not render the same outcome in the end.


Posted By: Susie H
Date Posted: Feb 23 2018 at 1:35pm
Hi Elsa
I just got the same diagnosis you did. Had small tumor, lumpectomy surgery. 3 lymph nodes tested. All clean. Margins clean. They are recommending general chemo and radiation for 5 months. I'm devastated. Thinking of refusing chemo. What did you end up deciding to do?


Posted By: 123Donna
Date Posted: Feb 23 2018 at 1:53pm
Susie H,

These are the NCCN Guidelines for considering chemotherapy.  We only get one shot of trying to stop this beast the first time.  If it returns, our choices are so much more limited.

https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#48" rel="nofollow - https://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#48




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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: gretta58
Date Posted: Jul 17 2018 at 2:50pm
I HAD the mamaprint done, it showed a 94% chance of recurrence without Chemo. Not liking those odds, so i'm giving it a chance.



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