Calling all TNs

KooKoo621

luvmydobies - you are thinking exactly the way I did at first, but that's not how he meant what he said. He was saying be prepared for anything, but LIVE LIFE. He always defers to my MO and has even given me questions to ask that I would not have thought of. Sorry I gave the wrong impression.  I have great confidence in all of my docs and believe that is extremely important.  

Cat - I had Taxol weekly x 12.  My greatest struggle was/is with neuropathy in my feet. There was a time when my MO was thinking of stopping Taxol because of the neuropathy, but I refused and quit telling them how bad the neuropathy was .... Nothing was going to stop me from getting my full 12 rounds.  I viewed stopping as not fighting.  So I toughed it out. I also had a lot of body aches and pains. Still have joint stiffness and at times move around as bad as my 89 year old grandmother. But all is better.  I will be praying for you!  

InspiredbyDolce

I too don't understand why the PCP would say to get your affairs in order.  We have several stage 3 survivors several years out now, without a recurrence.  I also have a colleague's wife who is 11 years out, stage 3b (6cm) tumor and 11/14 nodes positives ... who celebrates 11 years this summer.  I have heard of women saying their doctors have told them to get their affairs in order, but in each of those cases, it has only been under very final circumstances, where they had extensive progression and evidence that they were not going to make it for an extended period of time. I do understand what you are saying, I suppose in life we should all live with our affairs in order, you never know what might happen.  We had a big group of sky divers in town preparing for a huge jump to make it into the record books, and on Tuesday they interviewed a 36 year old lady here from Germany, who was part of the sky dive group.  2 days later on the practice jump, her main parachute failed, and her backup chute didn't deploy - she was killed.  The news replayed the interview they had with her from just 2 days earlier.  It was a shock and sad.  But in my opinion, to live under a statement that a doc has made to 'get your affairs in order' when you appear to have things under control with your health management, I feel brings undue fear and anxiety.  

InspiredbyDolce

Oh KooKoo - I just read your updated post.  Thanks for the additional explanation.  I had an experience with choice of words with my Plastic Surgeon.  He said something was "adequate".  Which I over-analyzed, why did he say adequate, because I think of adequate as "meeting the bare minimum"...but his experience with the word adequate, being a doctor, meant 'the right solution'.  Then I understood his statement better!

simplelife4real

All this talk of "getting your affairs in order"  reminded me of the first time I went to Vanderbilt for my initial consultation.  At that point I had only had a diagnostic mammogram and ultrasound, but no biopsy.  It was pretty likely I had cancer but hadn't been confirmed.  One of the first things the nurse practicioner said to me was "it didn't look good."  I thought she was telling me I was going to die!  She only meant that it looked like I had cancer.  Those words still ring in my ears sometimes.  It took several months for me to finally figure out what she was trying to tell me that day.  Someday, I'll tell her how I mistook what she was saying to me.  She is a great resource and sharp as a tack, but she really threw me for a loop with those words.

Cocker_Spaniel

Ladies your cancer fight is far from over and it never will be, it will continue until the day you die.  I am very passionate about this.  Our Onco's and Surgeons have done their bit and given us the best chance that they could now it's time for us to do ours.  You cannot give up. You cannot think about recurrence all the time or what might be. This big beautiful world was given to us to live in and we must take every opportunity to make this happen. If we are not going to fill our lives with meaningful things and only think of recurrence then we might as well give up now.  Navymom's son who is serving your country wouldn't give up, if a mate of his got killed he would continue to fight for his life. If Linda who lost her beloved girl had given up her granddaughter would not have had the loving, stable and complete upbringing that she has had. Cat is doing everything to overcome these further problems but she is not giving up.   No I don't read the stats and they get on my nerves keep showing  up because they pull me down when I am fighting to stay alive without recurrence. I'm not saying it's easy but neither was going through crappy surgery and chemo yet we made it and all the newbies will make it too.  There are lots of people out there with worse things than we have, yep I know that's hard to take but its true. At least we can say we have given it our best shot.  I just cannot continue to read about percentages, how long I have to live or not, what to eat or what not to eat, new treatments that never seen to happen.  I have had the same diet for 65 years so all I can say is,  this frigging cancer took a long time to come.  Yep its a crapshoot but so is a lot of things in life.  Cry when you need to, rant when you need to but push those thoughts of recurrence to the back of your mind every time they come and DON'T GIVE UP.  This is not just my Sunday rant, it's a rant I try to give myself everyday.     

Gramof2boys

Cocker- You've been at this a little longer than some of us, this is very new to me. I guess I need some time for all this to sink in. I've done my chemo, had my LMX, still need rads and then reconstruction. I hope I will have your outlook when these things are behind me. I want to be positive and have been strong for my hubby and kids but there are times when I wonder what will happen. I need to take one day at a time, hope for the best and try to live the life I had before all this started. Thank you for putting it all in perspective. I will learn to put this behind me but it does take time. I am 57 and want to live a long prosperous life, I just hit a little bump in the road.

Titan

Well said Annie!  yes..ladies there will come a time when you get rid of those 50 old sweaters you are never going to wear again...not because you are getting your affairs in order...you are getting rid of the old stuff to buy NEW!

DaughterOfaTN

my mom was just diagnosed at triple negative at 64. We are trying to determine the best treatment option. Chemo seems to be too big of a risk to maybe not even cure her so we are torn on what to do. I have a hard time believing this belief the chemo is the answer all the time, especially when I read all of these articles about cancer being a 60 billion dollar business and there being natural cures.

KooKoo621

Cocker -  I so agree with you, however, like Gramof2boys, I'm still struggling to live every minute of every day with that attitude. I do not dwell on statistics, Use the Google doctor or listen to what "they" say.  It took me months to be able read, much less reply to topics on this discussion board. I knew that, for me, an overload of information from those sources would only work on me mentally in a negative way, so I avoided them like the plague. When my fear creeps in, I don't have those statistics in my head to make me even more afraid. I have found that for me, music is soothing and helps me get in a better frame of mind.  I'm learning and getting better at it everyday, cocker!  

KooKoo621

Amen Titan!  I'm getting my NEW girls on Wednesday!    Looking forward to new beginnings! 

Cocker_Spaniel

Gram you have had your chemo, had LMX and have rads and reconstruction to do but you are overlooking one thing, you didn't give up fighting to live or you wouldn't have done any of it.  You were fighting from the minute you learned you had cancer and treatment was planned.  It's the things you are doing now that you need to take one day at a time ie finishing your treatment, for you, your hubby and your family. Yep there are times when you wonder what will happen, you may be scared, fed up with the whole lot of treatment and feel you have had enough as we all do/did, but I bet you $50,000 you won't give up.  Recurrences may come for some, maybe even me, who knows, but just don't let the thought of recurrence spoil every single day that you do have left. If you feel well embrace and enjoy every minute.  Fill your days with things you can do for yourself, and your family and gradually those bad moments will get less and less.  No I will not read stats or links, nothing against Inspired at all, (love yer Inspired) but they take away the fight in me and make me feel down and try take away my resolve.   The bumps in the road of life will come in many different ways Gram not just through cancer but its learning to banish those thoughts from your mind as much as you can and you will do it.

Titan I've still got a lot of those old sweaters left. I don't know about getting my affairs in order more like my wardrobe but the old feller reckons I have a lot of clothes, yea right.

DaughterOfa only your Mom can make the decision as to whether to have chemo or not, but I believe she has a much better chance if she has it.

InspiredbyDolce

When a fear comes up, have yourself a validation reference - someone that has had a similar diagnosis and is many years out. Seeing that someone else with a similar situation had success, can help to calm the nerves and provide a model for you, that it can be done.  Look for who you want to be that model, and sometimes, when you get into a scary place, send that person a note.  Ask them how they got past a scary thought - or ask them for suggestions on things they did or what they think helped them.  You'll get a lot of support and feedback - it will help!

- management of fear

Cocker_Spaniel

KooKoo you are doing so well just like Gram is. There will be days when you struggle to keep those pesky negative thoughts out of your mind but you have found something, just like I have,  that music helps your frame of mind.  I love soothing music and couldn't do without it.  Others find pleasure in other things and that is so good. Nothing about a cancer journey is easy, it is scary, sometimes you feel like crap and have to drag yourself around but you will find it gets easier and easier as your treatment comes to an end.  Then you may get the 'what if's' which we all have had  and that is just as scary but doing things you enjoy, listening to music, sewing something for yourself, exercise, anything, that will help you through each of these troubling thought days, just don't be tempted to try and look up something on google which may never happen. Little by little it will get better. Inspired is right find yourself a mentor if you feel you can't open up enough on here for any help but everyone of these ladies have been through it and are a wealth of knowledge.  We won't tell you if you are feeling unwell to 'ignore it and you will feel better'  but we will tell you to talk to your Onco or Surgeon and get their advice after all they know you and they know your plan.  But we can help if chemo is making you feel sick or you have constipation or a myriad of other things that one of us on here will have had,  Just remember we have been there and we know what you are going through.  If it wasn't for the fact that I only have one boob, sometimes I would swear it was a dream.  You will get there one day, just keep fighting. 

encyclias

Daughter Of, when I was diagnosed TN in Oct, 2012, it was less than a month before my 64th birthday.  While we all respond differently, I found my A/C chemo to be relatively uneventful except for around the last treatment when I began to feel fatigued and spent time on the couch just reading, watching old movies.   I was my normal 'hyper' self within a few weeks after it ended.  Definitely doable for us seniors.

Sending best wishes to you and your mom.

Carol

Lisaj514

inspired and cocker- such good recommendations regarding support and keeping the fears at bay. I really liked the things you both said. Thanks

CatWhispurrer

KooKoo - yes, I still have some neuropathy from the first time I got taxol in 2012.   My onc wanted to skip the last dose (I got dose dense every two weeks), but I stuck it out too.   Thankfully, so far, the second infusion isn't hitting me as hard.   I am still able to function.

I am getting another biopsy on Tuesday from the nodes in my neck.   I am already scared and having nightmares.   I need to take you all in my pocket again!

tekwriter

Daughter I am 60 and just had a complete pathological response with my chemo so do not understand where you are coming from.  Do some more reading.

I got by best advice on here for living with this stuff.  I will paraphrase for the way I feel about it. Get over myself, live every day to the best of my ability, love my loved ones the best I can every day, enjoy everything I can every day, let go and let God.

InspiredbyDolce

Which of you ladies recently said that you researched a specific chemotherapy drug, and you talked to your Onc and they were going to add it in to your treatment?  What was the name of it? I know someone newly dx'd (friend of friend) and your info might be helpful to her.

On a different topic, for those of you who have just now had a recurrence, I found this article:  "Optimal strategies for the treatment of metastatic triple-negative breast cancer with currently approved agents" Article: Oxford Journals: Annals of Oncology

InspiredbyDolce

DaughterofaTN:  I would consider multiple specialist opinions to further help you and your family decide on the best choice of treatment for your Mother.  Initial treatment is often the best chance for a cure or remission of TNBC, and as Tekwriter (age 60) mentioned, she had a pCR - and studies show that those with a pCR have an increased likelihood of long-term survival. 

InspiredbyDolce

I came across this article, which was interesting.  This is an Excerpt from the Intro on the article:

"To find out how clinicians can discuss and explain the implications of a diagnosis of triple-negative breast cancer with their patients, Sandra A. Finestone, PsyD, a member of the Susan G. Komen for the Cure Steering Committee for the Breast Cancer Curriculum on Medscape, and herself a breast cancer survivor, interviewed Hope S. Rugo, MD, Clinical Professor of Medicine and Director, Breast Cancer Clinical Trials Program at the University of California at San Francisco. Their conversation is both revealing and instructive and is presented to help clinicians communicate more effectively with women who have just received a diagnosis of triple-negative breast cancer."

I have tried to copy the link into a new browser and it doesn't take me directly to the article, but the log in page.  If you can't get to the article, copy and paste the title into your browser, and then click on the link that comes up for it.  

http://www.medscape.org/viewarticle/711773

If you can't access it without logging in, you can get to it this way:

Copy and paste this:  <Talking with Patients about a Diagnosis of Triple-Negative Breast Cancer:  An Expert Interview with Dr. Hope Rugo>

The first result in your search engine should be this article and then if you click there you should be able to access the article without having to log into a site to access it.

Cocker_Spaniel

Cat right there with you in your pocket.  Deep breath, one foot at a time and you will get there.  Is there anything you can take or do  to help calm you.  Karen found an Ativan helped her anxiety, not sure if we have them in NZ.  Keep as busy as you can, watch a funny movie, laugh as much as you can.  When you go in tomorrow I will be right there beside you, I am having a scan on my liver and ovaries.  We will get through this.       

gillyone

Daughter - is your mother competent to make decisions about her own care? 64 is not old for anything and certainly not for chemo. But this should be her decision not yours. If she is interested in the natural route you need to go visit the alternative threads. I think everyone on this thread has had chemo and/or rads and many of us feel we would not be here but for the conventional treatment we received. Yes some have complemented their treatment with other more alternative ideas. But you don't mess around with TN if you want to have the best chance of survival.

slowloris

To those of you with fear of recurrence:

I want to give you some insight. My case, although it happens, is not the "norm". My cancer keeps recurring, basically, I haven't been without it. And my advise to those who fear this is to just continue to live your life, fill it with as many activities as you can, and enjoy.

Yes, there are times that I have had fear. It is like mourning  someone's death. There are stages..... denial, anger, acceptance, and peace. I have had all. Sometimes I go back and forth between these stages, but with all honesty, most of my minutes are at peace.

I've had a few friends die suddenly from accidents, heart attacks, etc. And all were relatively young, my age, 50ish. In a way, it saddens me to know that for some of these people, they were not able to make peace with relationships, and themselves. Cancer has given me a gift of understanding more than I would have ever thought if I was not forced to think of my own mortality. I'm much more forgiving, empathetic, sympathetic, understanding. I'm much less hurried (Conversely to what one would think since I know my life will be shortened), less stressed about the small stuff,less worried about attaining "stuff". 

I am the baby of 7 children. Mom is 86. I have 2 daughters, 16 & 17. I am 51. Married. And I can honestly say I feel more blessed today than ever. My oldest brother tells me he loves me EVERY time he sees me,in fact all of my siblings and mom do (just more surprising about the eldest). My friends and coworkers have been amazing, bringing me food or small tokens of love. I feel their warmth always.

Today, my husband and I took a bike ride down to the park at the river, 7 AM, before the kids were awake. (we all know teens can sleep til noon!!!) It was beautiful, watching the water fowl, the flowing river, the peacefulness of it all. An hour ago we were outside pulling weeds and doing yardwork in this amazing sunshine and fresh air. And I appreciated it so much more.

My point is this: We can only do what we can do to stave off this disease. If it's going to happen it will. Worrying about it beforehand does nothing but eat up your time and energy. If these are the last few days, weeks, months, or years of our lives, do we want to have spent it in that way? Or do we want to look back at our lives and say ," Man, That was one hell of a ride!!!"

InspiredbyDolce

Cocker and Cat - thinking of you both during your checkups and procedures this week.  

Lisaj514

slowloris-amen, that was beautiful! We can all learn something from what you expressed. Thank you!

Cocker_Spaniel

Slowloris I take my hat off to you.  Everything you said is so inspirational.  You are still undergoing treatment but continue to stay as happy and optimistic as possible and get on with life as some are others on this thread.  The aim is to not look back, don't fear recurrence because it may never happen and why waste precious time on what if's. Not saying the what ifs don't come because they do but to get through it like you have is inspirational to us all on here. Plus although you probably were close to your brother it has brought you closer still.  Good luck with your treatment and stay as upbeat as you can.  Keep going girl we are all with you. Work and music has been my saviour and my family.  It really helped me to go to work and able to concentrate on that plus have some wonderful laughs with the girls here. It's a magic formular for me laughing I think you can get through anything if you are able to laugh. 

Inspired thank you for thinking about me tomorrow. 

Cat hope that anxiety is better .  Thinking of you and  keeping fingers crossed.

Titan

Annie....I swear the old fellers always think we have too many clothes...or shoes....what do they know..lol....yesterday I bought 4 shirts and a pair for shoes and my dh was like..you bought all that...yes dear....then he went away like a good old feller...

Daughteroftn...glad you came on here for support and information....64 is not old at all...if your mom is in relatively good health and her onc recommends chemo..maybe she should at least try it...she can always stop..

If I had been stage 1 and er and pr positive and taken the oncotype test and it was low and my doctors said I really didn't need chemo..of course I wouldn't have done it...there would have no need..but TN is a different type....more aggressive, more likely to reoccur without treatments (and no guarantee with treatment either)....there are very few of us that did not do chemo of some sort..some chemo is milder...maybe your mom could do that?  

Please please don't believe everything you read on here...even what we say ok???  we are not doctors..just relating our own experiences...and trying to help...get a 2nd or 3rd opinion.

Yes..chemo is a big $$ business..but I am glad I did it....I don't know if I would have been here without it...I will never know.  I really would like to meet someone with triple negative that went alternative and survived...I would love to hear from that person...but...so far...no one has spoken up.

DaughterOfaTN

I did not mean to upset anyone with my post, it has been a very emotional and trying time. She doesn't know what the best route for her is and I didn't know if there was anyone else in a similar position or who had been through this. She had a lumpectomy and removed a 2.3 cm tumor and it had not spread to her lymph nodes. The options are endless and we are scared. My father just got over prostate cancer and my 29 year old best friend just finished treatment for her breast cancer. 

DaughterOfaTN

we just didn't know if radiation and mastectomy would be enough. We would definitely do that at the least, just torn with introducing chemo or not. I am very appreciative of any input:)

Jianchi

slowloris: thank you, and yes, I really did not want to have more surgery.  I am meeting another BS for a second opinion tomorrow.  She is an TN expert, and I will see what she says.

Regarding chemo or not, it is a very personal choice.  We just hope for the best no matter what.