Calling all TNs

simplelife4real

I think this 30% number is confusing people as to what it means.  The number that an MO told me in the beginning is that about 30% of TNBC people getting neoadjuvant therapy will have a pCR (pathologic complete response).  Other people (like me) do respond to chemo, but don't get a full pCR.  I had a small amount of residual cancer left in two nodes after chemo, my primary tumor was completely gone due to chemo.  My MO says I have around an 85-90% chance of survival now.  If I had pCR, she would have put that chance of survival up to 95%.  I hope that clears things up a bit.

Here's an interesting article about a new approach for us TNBC gals.

Molecular Drug for TNBC

gillyone

The decision regarding mastectomy v lumpectomy plus rads (if such a choice exists for a particular individual) goes around and around on various threads. There is no difference in outcome, whichever you choose - ie whether you get a recurrence does not change. I just want to caution us all to do research, talk to our doctors and do what what is best for each one of us, and not be swayed too much by anecdotal information we receive on these discussion boards. None of us are experts, and mostly we are simply talking about ourselves.

Unfortunately, too many people believe that a mastectomy removes all breast tissue - that is not possible. There will always be a few cells left. Many also believe that a mastectomy means there will be no chance of recurrence. That is not so. I hate to think that some of us go through a BMX under "false pretenses" believing we are removing all possibility of a recurrence, be it near or far.

Perhaps Luah will chip in here with her knowledge.

lilyrose53

Hello ladies!  I'm new here, but have been reading this board for a few days.  I'm very new to all this, as I'm only a month out from my surgery.  I chose lumpectomy after careful consideration of all of my options.  I decided I wasn't ready to lose the girls yet.  If I need to later on, well, so be it.  But three different doctors all gave me pretty much the same stats...and all told me I was a good candidate for breast conserving surgery.  But we all need to make our own choices and be comfortable with them. 

Now, I'm facing the start of chemo, which has me a bit nervous.  I had my port put in a few days ago and have picked up all the anti-nausea meds, ect. that my MO ordered for me.  Monday is more blood work and then start my chemo on Wednesday.  My chemo class was helpful, and they told me that the ACS volunteers come in every week to check on new patients.  They offer free wigs-whoopee!    Seriously, everyone at the cancer center where I will receive my treatment, has been super helpful.  I just hope I'm not going to see many side effects.  Wish me luck.

Hugs to all, lilyrose53

Meadow

Lilyrose, Welcome to a group you never wanted to join! You will find support here, and information, laughter, and will never cry alone.

Good luck with Chemo. It affects us all differently, hope not so bad for you. Try not to be nervous, sounds like the staff at your cancer center are caring and they will take good care of you. 

InspiredbyDolce

Im not sure about your conclusion if that is exactly what he meant.  I will try to research for all of us.  I know of people who have gone over 26 years surviving TNBC without chemo (NoniJones) so even without pCR survival is possible.  Ask your Onc what it means if 30% reduction.  I think other factors can influence survival so if someone didn't have a response to chemo they might still not recur and those who do have a pCR could still have a risk factor.

LPBoston

HI DaughterOfaTN - I am so sorry to hear your mom having to go through this but having you around seems like she is in very good hands. 

I actually didn't have a recurrence from the original BC but ended up with a totally different cancer.  In 2003 I had breast biopsies in my right breast that were inconclusive.  My breast were so dense I ended being bruised from my collarbone to my waist from the doc trying to get the biopsies done.  In 2004 I had invasive ductal carcinoma stage 2 (not sure of the correct terms) in my left breast so had a lumpectomy, chemo and rads.  In 2013 after my yearly mammo, they saw something in the right breast so I had an ultrasound, breast mri and biopsies and they still didn't know what it was.  I was given the choice of a lumpectomy to see what the path reports would come back with and if it was anything they said I should go for the mastectomy so I decided why go through a lumpectomy when in the end I may end up with a mastectomy anyways so I decided having both off would make sense seeing I already had BC before.  Well I am glad I did go with the double mastectomy because this time around it was TNBC. I was told that I would not get breast cancer again but there is a very small chance that a few cells could have escaped and may pop up somewhere else in my body.  I am going with that small chance and trying to live my life as normal as possible if having gone through this there is any sense of normalcy afterwards. We are all different and have to make our own decisions and I don't think I made the right decision back in 2004 but I am still here and am thankful for that.  I also had to go through chemo again but no rads.  I had the tram flap reconstruction the same time and after a year I am still not back to normal.  I am in my 50's, feel young and have a busy life so not having reconstruction was not an option for me.  Would I have done the tramp flap again instead of implants I don't know.  It was a personal choice I guess but not realizing how long the recovery was going to be,  not sure it was the right choice.

Good luck with your mom - I am praying she gets through this and kicks it's ass.

LPBoston

Lilyrose53 - praying for you and it really does sound like you are in the right place and they are taking very good care of you.

LPBoston

Hi  -  I too was told that if I went through the chemo there would only be a 7-9% chance of it coming back but if I didn't go through the chemo there was more of a 20% plus chance it would come back.  For me I would recommend doing whatever it takes.  Good luck and I am thinking of you.

simplelife4real

Lilyrose, welcome!  Have you also joined the chemo thread for April 2014?  I joined the chemo thread for the month I started (Sept. 2013) and it has been a wonderful source of support as well.  This TNBC thread and my chemo thread are my two favorite threads here.  Wishing you the best with chemo.  What will you be doing in terms of chemo?

lilyrose53

Meadow - Thanks for the warm welcome!  Ya, I'm still a bit nervous, but everyone tells me the anticipation is worse than the actual treatment.  We'll see. 

LPBoston - Thanks!  I'm hoping for the best and I will take all the prayers I can get!

simplelife4real - Hi!  I think I met you on the TNBCfoundation boards?  I love your name.    Yes, I joined the chemo thread for April 2014.  I am supposed to have A/C DD every two weeks 4 rounds.  Then on to Taxol weekly for 12 weeks.  I will also have rads.  I'm just freakin nervous about the side effects...I have a phobia about throwing up.  Did it every.stinkin.day of my first pregnancy.  ugh.  I'm hoping the meds they give me work! 

I wish all of you ladies the best!  Hugs,  lilyrose53

InspiredbyDolce

Regarding the misclassification of receptor status, GenOptix has the most advanced testing available to date, for the accuracy of receptor status testing regarding ER/PR status.  If anyone is concerned of an inaccurate result with ER/PR, then you might want to consider the GenOptix testing.  I had it done to confirm the TNBC status.  Here is the link to their website:

http://www.genoptix.com/nexcourse_breast_ERPR.php

BanR

simple: i guess you are right. By 30 to 40 percent MDAnderson website meant what we know as Pcr.

30 percent of us will have a complete response to chemo. That is 30 percent will achieve a Pcr who opt for neoadjuvant chemo. 

The ones who just had surgery and didnt do a chemo, depending on the stage etc there is still a small percent of chance of survival ( that is if the cancer never spread and the surgeon did a good job of eliminating the entire thing out)

10 to 20 percent of tnbcs will have no response to chemo ( there are a few subtypes of tnbcs which are highly chemo resistant)

InspiredbyDolce

We were talking about chemotherapy risk reduction, and what does it mean?  I found this Q&A article about Chemotherapy on a health website. This is chemo in general, not specific to TNBC, but I'm posting it here for the general understanding of how chemo can reduce risk:

"Breast Cancer Chemotherapy FAQ"

In regards to if chemo reduces our risk by a certain%, does that mean every person has that same %?  Here is an article that shows how these %s translates.  I think it's beneficial if we know what our recurrence risk is before chemo.  I know Oncotype figures that out for ER+ women, and so perhaps we do need to know what our recurrence risk would have been prior to chemo to understand what our survival rate is increased to with chemo.

"Breast Cancer: Making Sense of the Numbers"

Excerpt from above link:

"How does treatment change the odds of survival?"

"Chemotherapy, radiation, and hormone therapy can help more women survive breast cancer. Because these therapies also involve side effects and additional risks, they are not used in all cases. You may have a chance to decide if you will get certain treatments. It is helpful to understand how these treatments affect your chance of survival.

Let's say you hear that a certain treatment reduces the risk of recurrence by one-third. This means that if 30% of women in your situation were likely to have a recurrence, then of those who took this treatment, only 20% would be likely to have a recurrence (one-third of 30% is 10%; 30% minus 10% is 20%). The greater the chance of recurrence at the start, the greater the benefit of the treatment. If your stage gives you a 95% survival rate (5% recurrence rate), you might decide that treatment does not change your risk enough to make it worthwhile. For instance, in this example, a treatment that reduces recurrence by one-third would change the 95% survival rate to 96.5%."

ksb

@angstap (feb) so amusing...made me laugh outloud!!:):)

ksb

@angstap...made me lol!!!!! Your post in Feb♥️♥️

InspiredbyDolce

Hi everyone! Chiming in regarding the LX vs BMX, this is what my Breast Surgeon told me, and I confirmed the information with my Oncologist.  Before I had any surgery, and when the only thing we knew was the approximate size of the mass, my Breast Surgeon said that with the BMX, the risk of local recurrence goes down from 10% to 2%-4%. He said prognosis is the same with lx or bmx, but risk of local recurrence goes down. After surgery, and after several tests were done to confirm that I was TNBC, I went back to them and asked what my %s were, now that I had been dx'd as TNBC. I was told with TNBC as my diagnosis, that my local recurrence risk was reduced from 15%-18% to 10%. When considering treatment, whether it is surgery, radiation, or chemo, I always recommend asking what % of risk reduction do you gain by a particular treatment. That knowledge can help you make a better informed choice, and one that's best for your particular case.

InspiredbyDolce

Tekwriter - I loved your idea of how you are going to keep articles you come across in a binder to take with you to your next appointment.  That is such an organized way of doing things, and you will know exactly what you want to discuss with your doctor.  Being organized and keeping a list of questions is so helpful.  I still make a list between appointments to ask my Onc - the list is becoming shorter for him (and I'm sure he appreciates that).  

simplelife4real

Lilyrose, I use the same user name on all my "public" threads....so, yes, that is me!

I also make a list of questions before each doctor's visit.  If I have a long list, I actually print two copies of it.  One for me and one for the doc so we can both see all the questions at the same time.  My doc's seem to like that.  I have also brought in copies of pages from clinical trials and articles that I have questions about.  It does help to move the conversation along and keep things focused.  Very rarely do I walk out thinking "oops....I meant to ask about that!"

Meadow

Dolce, I am still learning about TN, so forgive what might seem basic questions. So in reading your explanation do I see that the % chance of re occurrence goes down? 

lilyrose53

Simplelife4real,  What a great idea!  I think I will steal that one from you.  That way my dr and I can be on the same page!  LOL  These boards have been such a great source of good information.  Thanks!

Hugs,  lilyrose53

Allydp

Hi Lilyrose, welcome! I'm pretty new here, too. 

Regarding LX vs BMX, I wanted to contribute this info. I actually just had a conversation with my BS about it yesterday. I took her 3 pieces of literature (below). From my research, the risk of local recurrence might be slightly less with LX because of receiving radiation therapy. So my question to my BS was - even though I'm node negative and having a BMX, should I consider radiation? She said that there is some data out there that shows those with early stage TNBC who have radiation do, in fact, do a little better - but she said it's very slight. The risks of radiation may not be worth the few percentage point drops in recurrence. I'm meeting with a rad onc at the end of the week to discuss the studies and make my final decision. 

I know this isn't exactly what was being discussed, but I thought I'd mention it.  

http://jco.ascopubs.org/content/29/21/2841.full

http://annonc.oxfordjournals.org/content/23/suppl_...

http://ww5.komen.org/KomenNewsArticle.aspx?id=1932...

InspiredbyDolce

Hi Meadow!  Your question is en pointe! It is a learning process and all of us are here ready to help you!

I am referencing this and including a link for you! Excerpt from Cancer.net that explains chemotherapy.  Chemotherapy has different expectations depending on the situation.  In some situations, chemotherapy is used to try and cure a patient or prevent a recurrence.  In other instances, where they have determined that can't be accomplished, chemotherapy is given to control a disease. For your own particular stats, do ask your Oncologist what the goal of your chemotherapy is and what you can expect. Also, I noticed that you have listed IBC down as well?  Try connecting with FierceBluebird, who also had a diagnosis of IBC with TNBC, and she might be able to share information with you on what the particulars are that are associated with IBC. 

"What is Chemotherapy?"

"Uses of traditional chemotherapy

Chemotherapy is often used as an adjuvant treatment (treatment given after surgery or radiation therapy) to kill any cancer cells that remain. It may also be used as neoadjuvant therapy (treatment given before surgery or radiation therapy to shrink tumors). For cancers of the blood or lymph system, such as leukemia and lymphoma, chemotherapy may be the only treatment given. In addition, chemotherapy is used to treat recurrent cancer (cancer that comes back after treatment) or metastatic cancer (cancer that has spread to other parts of the body).

Goals of chemotherapy

The goals of treatment with chemotherapy depend on the type of cancer and how much it has spread. In some situations, the primary goal of chemotherapy is to eliminate cancer cells and prevent recurrence."

What might help you the most, is here is a link to download the TNBC Guide from the TNBC foundation.  It is very information and there is a Q&A of many commonly asked questions.

TNBC Guide Download

simplelife4real

Hi Meadow, I just wrote you a note on the Sept. 2013 chemo thread.  I'm glad you have found this thread as well.  These are my two favorite threads here in terms of information and support.  Good to see you posting here!

Ally, you are doing a great job of asking all the right questions to your docs.  It will be interesting to see what the RO has to say.

slowloris

Prayers to Bluebird. I hope they get the pneumonia under control.

I tolerated the Halaven well, so they went with the full dose for my 2nd tx. I hope it holds the progression. My nodules in my chest actually hurt and itch, so I'm envisioning the chemo eating away at those nasty cells, and hoping that's what is causing the discomfort.

I'm still waiting to hear if I qualify for the PD-L1 trial.

InspiredbyDolce

Here is another article about LX and MX in TNBC patients - it focuses on 'risk factors' in a determination of local recurrence risk. Path reports can very so greatly, even in stage 1 and stage 2 patients, that this information might be really helpful.  

http://www.ncbi.nlm.nih.gov/pubmed/23576181

This post is being modified, to include new information on new post. See new post.  

InspiredbyDolce

SlowLoris:  Continued prayers for you! Sounds like the full dose is doing it's job!  When do you expect to hear an update about trial eligibility?

InspiredbyDolce

I came across this article on another breast cancer website, title is:  "Risk of Residual Disease Up in Triple Negative Breast Cancer".  This is the last paragraph from the article:

"Our study shows that TN phenotype is independently correlated with increased risk of residual disease after lumpectomy," the authors write. "This finding suggests that TN breast cancers harbor more microscopic residual disease after lumpectomy, and thus molecular phenotype should factor into decision-making regarding the extent of initial surgery (generous gross margins) and the need for reexcision."

http://www.pri-med.com/pmo/Medicalnewsdetail.aspx?...

Also, if you are considering lx vs mx or bmx, there is a member by the name of Beesie, who has posted much information about the two.  You might reach out to her or find some of her posts, to see what information she has posted about.  She is not TNBC, but often when I do research on here through a search method, her name comes up and usually she has a very informative post - it may not be directly related to TNBC, but she writes clearly about things things to ask in various parts of the initial bc treatment plan process, other things to take into consideration regarding lx or mx and many of her posts are helpful, regardless if you are TNBC or not. 

slv58

sometimes you can get so overwhelmed with information and studies found on the net. Please note that the above article is dated Aug. 2012. I had a real hard time deciding what to do as far as surgery. I did not have a gut feeling and found myself flipping back and forth depending what I read. In the end, I decided to go with what my surgeon suggested- I had to trust she had much more experience and knowledge than what I could learn reading umpteen studies from varying years. Did I make the right decision? I hope so, I'm at peace with it. 

Meadow

Thank you Simple, very much. and I got a sweet message from Bluebird, sorry she is not feeling well

Meadow

  I think you are right, and today for some reason I feel overwhelmed. I am in a good place, NED, thru treatments as of last Monday. Yet today I feel a bit weary. Maybe just need a good nights' sleep.