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spotter
spotter Member Posts: 5
edited June 2014 in Triple-Negative Breast Cancer

Hi, I was diagnosed with triple negative breast cancer in the  last month.  I had a large cyst, which was drained and came right back, even larger.  I then had a lumpectomy, which turned into a "partial mastectomy" (sounds like the same thing, only more expensive).  The pathology report said the tumor was triple negative and very aggressive, grade 3.  Although they got clear margins, it was a very large tumor with "syncytial growth pattern without tubule formation, prominent lymphoplasmacytic infiltrate and high grade nucleilymphocytoplasmic invasion."  I guess that would be the cyst, surrounded by a very nasty cancer.  It now looks as if the cancer is in my lymph nodes, and maybe even liver, with more tests and biopsies to confirm, then chemo in mid-August (ACT for 16 weeks).

I am getting all kinds of gratuitous advice, some very welcome, some a bit annoying, some quite educated and helpful, some obviously well-intentioned but really stunningly off-base.  (I am not in pain.  Telling me what pain meds you like best is not helpful.  I do not have time.  I am spending all my time going to medical appointments and surgery, and winding up my work as best I can.  Telling me what volunteer activities I should now take up is not helpful.)

 It is amazing to me to find how many people have been through this, or have relatives who have been through this.  I welcome their advice and experience.

So, with that in mind, please consider this an open invitation to each of you ladies with triple negative: what is your experience?  What advice do you have?  What would you have done differently, if anything?  What have you learned?  Did you recover and manage to go on?  Is it something you live with every day?  Am I doomed?  Should I have hope?  Should I soldier on as normal?  Should I ditch it all and finally do all the things I meant to do years ago but really can't afford? Or should I continue my usual, boring, but really very comfortable day-to-day life as best I can? Please give me your well-earned advice.  Thanks.

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  • Titan
    Titan Member Posts: 2,956
    edited July 2011

    Welcome newby..to the tn thread..

    To be brief..I was diagnosed in 3/09, had lumpectomy, 8 chemos, 30 some rads, see the BS every 6 months, the onc every 3. I worked through it all..but I work in an office and my employers were the best.  I had all my treatments in the city where I live so no traveling. It wasn't easy but I got through it. I wouldn't have done anything differently.

    Good question about doing things NOW instead of waiting for later.sometimes I would sit and wonder why I was at work when I should be out doing something..but honestly I couldn't afford to quit work....you still have to do what you've got to do.....I try to have as much fun as I can..and be involved with family and friends as much as I can...

    I just try to live FOR NOW...and not worry about the future too much..

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  • Suze35
    Suze35 Member Posts: 1,045
    edited July 2011

    Welcome Spotter, although I hate to see you here.

    My experience - diagnosed 9/10 with two 4cm tumors and 4+ lymph nodes.  Did AC DD x4, then 12 weekly Taxol/Carboplatin.  I was having a great response, until the cancer figured it out in the end, and by surgery, I had enough disease to be Stage IIIc.  I did 9 weeks of radiation, and am currently doing Xeloda with Avastin in the hopes that it will keep the disease at bay - currently my scans are all clear.

    My biggest piece of advice - be your own best advocate with your doctors.  Make sure they address your concerns adequately, and monitor you closely. Don't be afraid to find another doctor if you aren't happy with yours. This is a relationship you will have for many, many years - make sure it is a good one!

    If you do have cancer in your liver, that would make you Stage IV, which is treatable, but incurable. The people on the Stage IV forum can provide you lots of advice and support.  It does mean you would likely be on some form of treatment/chemo for the rest of your life, although some Stage IV TNs do go into remission for long periods of time. So there is hope, but tempered with realism.

    I am not Stage IV, but my odds of getting there are unfortunately good. Because of that, I am doing some things that I would have put off before, but I'm not in a mad rush. We are taking more trips, targeting areas I truly want to visit. I did go and buy my "bucket-list" car - a 1973 MG Midget, and am having so much fun with it. Totally worth it.  We are not bankrupting ourselves, but we have put our aggressive saving on hold to enjoy it.  I can always go back to that in a few years if need be.

    Do you have children? I am writing in journals for each of my three, doing a cross stitch piece for each of them, and working on photo albums.  The best case scenario, they read them in 30 years.

    In the end we all have to travel the road that best suits us.  If staying in your routine brings you stability and peace of mind, then it is worth it.  If the idea of grabbing the bull by the horns sounds appealing, then go for it!  I've tried to have a balance of the two, for the sake of my family. 

    Best of luck, and keep us posted on your scans!

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2011

    Hi sister, people can drive you crazy, but just turn them off and come here.  I too am Tri-Neg, but am 13 years post treatment.  Don't worry too much about the aggresive part, ALL cancers are aggresive.

    The good news for us is after 2 to 3 years, Tri-Negs almost NEVER recur or metastasize.  This is great news.

    Gentle hugs, Shirlann 

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  • spotter
    spotter Member Posts: 5
    edited August 2011

    Thanks, ladies, I will take all of your advice to heart.  My kids are 21 and 24, thank God. They still need me, occasionally, but it's not like some of the women I have met in chemo classes who have little kids -- it breaks my heart, and scares me for them  -- they must be frantic.  I am more fatalistic than anything and will accept whatever happens, good or bad.  I am just trying to study and understand things.  It is good to hear from somebody who's triple negative and 13 years out.

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  • livinglarge
    livinglarge Member Posts: 161
    edited August 2011

    I agree... Always good to hear from a 13 yr survivor.  

    Being TN is a little different than other BC but it is treatable and we can survivor.  My daughter is still in high school and I can't afford to really quit work right now BUT I still try to keep everything in perspective and enjoy every minute.  I don't get as mad or intense over little things.  I take the time to walk with my daughter and spend quality time.  None of us no how long we have (even if you don't have cancer) so this experience has given me the opportunity to slow down and digest life to the fullest.  Something I would not have done prior to being DX given I am a type A personality that runs on full speed all the time (well not anymore)...  Enjoy life and visit the site anytime you have any questions or want to talk to others that might also be scared and filled with uncertainty.  There are some great women on the site.

    I am truly sorry to welcome you to the TN BC site. 

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  • tninalabama
    tninalabama Member Posts: 64
    edited August 2011

    Well now... hopefully you don't have any mets. Chances are much better for non recurrence if you don't ( lymph node negatives have good a prognosis). Chemo works, just find your right combo. Taxotere (that will tear you up) is good and standard. Feel sorry for yourself every now and then, live your life as you want. You are not doomed yet.

    Pam 

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  • christina1961
    christina1961 Member Posts: 736
    edited August 2011

    Spotter,

    I am really sorry you are going through this.  You will find a tremendous amount of support and information here.

    People told me to stay off the internet and not do so much research, that it would scare me.  I ignored that advice because I knew I couldn't follow it anyway.  I read every study I could get my hands on, borrowed a friend's university log in so I could access more journals - and I learned things that helped me - then, putting advice like Suze's into play, I became an advocate for myself.  I tried to educate myself about everything as best I could. 

    I don't let little things bother me like I used to, either - it just doesn't matter.  Hang in there, and please let us know how you are doing.

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  • Maria_Malta
    Maria_Malta Member Posts: 961
    edited August 2011

    Hello Spotter,

    By the time you read this you'll probably know a lot more than you did when you first started this thread...you'll find that you'll be learning something new every day, and that's good as you will feel more prepared to speak to your doctors and better able to understand the proposed treatment.

    I was diagnosed in March and am coming to the end of 8 chemo cycles, my last being tomorrow week.  I can't say chemo has been a picnic, but I've managed to get through it, and crucially my 5cm tumour has shrunk virtually to nothing.  Surgery and radiotherapy follow, but I'm feeling a lot better than I did 5 months ago...GOOD LUCK!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    I am 2+ years out from finding my cancer. My life is not the same. At first I suffered dark depression but now I have come terms with it. I am a different person from it. I am no longer shy and quiet and a loner. I am forcing myself to get out and meet people and have fun. I wish I would have done this years ago. I am 47 years old and feel like I have been given another chance. I have put myself into situations that I would have never done and having the time of my life. Even my friends notice the change. I have put toxic people behind me with their nasty remaks. I try to enjoy something everyday even if its just watching the rain.

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  • livinglarge
    livinglarge Member Posts: 161
    edited August 2011

    Newby - How are you doing?  I noticed you have not posted since your original post.  

    Just want to let you know we are here for you and we all understand how overwhelming BC can be.  Especially the early stages of the process with all the tests and starting treatments and stuff.

    Take care 

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  • spotter
    spotter Member Posts: 5
    edited August 2011

    Thanks, ladies!  I just started chemo last Friday. (ACT for 16 weeks, then "we'll see.")  They cancelled my liver biopsy at the last minute, and then cancelled my lymph node biopsy at the last minute, then decided to just do port surgery.  The doctor explained that he didn't want healing, etc. to delay the chemo, and didn't want the risk of the liver biopsy 'til the chemo had a chance to work.  So now I'm on "liver watch," I guess, and will have lymph node surgery and perhaps more later.

     I thought chemo was a picnic until day 3 -- no picnic!!!!  Now 4 days later I can finally think about food.  The Neulasta shot has also swelled my arm up and made it kinda purple.   Thanks so much for your advice and help -- it means a lot to me!

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  • livinglarge
    livinglarge Member Posts: 161
    edited August 2011

    Are they giving you anything for nausea?  I had finagrin (sure that's not how to spell it) and I ate thru the chemo treatments (I gained weight from chemo).  The neulasta can have some side effects but you can get thru it.  Make sure to check with your onc regarding pain meds during chemo.  I forget which ones you can and can not take.  It's either tylenol or advil but check with onc if you need pain meds.  You might get a little sore in your hips from neulasta.

    Hang in there you will get thru it, but please make sure you eat.   The 16 weeks will go by quickly.  We are all here for you. 

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2011

    Spotter: how are you holding up?? Sending well wishes your way.

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  • spotter
    spotter Member Posts: 5
    edited January 2012

    Thanks, ladies! Please forgive me for not posting; this has been my life for the last few months, and it's just a little much sometimes to read about it, too.

    I'm done with chemo, finally, and had scans that showed DVT in my axillary, subclavian, and jugular veins (that last does not sound good at all).  So now I'm on Lovenox.

    I have surgery scheduled for 1/27 for the lymph nodes (finally) and to take out the port, since that's the site of the DVT.

    My current quandary, such as it is, is that the doctor has not told me whether I'm stage 3 or 4.  The larger of two spots in the liver cleared up.  (They thought the smaller was just fatty tissue.) Before chemo, the oncologist said that if the liver cleared up, we would know that it was cancer.  Now that the liver HAS cleared up, he said that maybe it was cancer, and the chemo killed it, or maybe it was not cancer, and it just "coincidentally cleared up."

     Don't get me wrong; it's good that it cleared up! Not to sound ungrateful, but I feel that I really need to know if it's stage 4 or not.  I just can't imagine making plans and going on with work if I have stage 4. I would rather do other things with my time. I think he's trying to reassure me, which really is not necessary. I can handle it if it's stage 4; what I really can't handle, after all this time, is not knowing what stage this is.

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  • naturalhorse
    naturalhorse Member Posts: 33
    edited January 2012

    Hi Spotter,

    I don't know if this will help you or not.  After being with my current oncologist since the first diagnosis in July 2009, I recently asked for my medical records from him.  This is truly the first time I knew/understood my diagnosis and how his perspective of this journey is entirely different than mine.

    After my mastectomy I asked if that meant I was now NED.  His reply was that I was cancer-free.  Come to find out from the records that my status was listed as "no evidence of disease".  WTF!!!!

     The moral of the story......Get copies of your medical records and you will then have, in writing, what your staging is.

     kc

    BTW I'm now in the process of interviewing new oncologists. 

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  • overwhelmedmom
    overwhelmedmom Member Posts: 13
    edited February 2012

    naturalhorse,

    please excuse my ignorance, but what does NED (no evidence of disease?) vs. 'cancer-free' mean..are they not the same? I am meeting with my onc at the end of the month to determine my prognosis after surgery and chemo, so want to ensure I know the right terminology.  

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  • hydeskate
    hydeskate Member Posts: 297
    edited February 2012

    I am Stage IV and NED the way my doctor explained it was the cancer is still there just not multiplying or big enough to show up on scans.  My tumor marker has been at 17 to 24 for the last 2.5 years.  That being said "cancer free" in my mind means for those with Stage 1 to 3 that treatment has erradicated the cancer, but like everything it could come back.

     But like everything each doctor has his/her on defintion of both, from I have read on the forums. 

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  • naturalhorse
    naturalhorse Member Posts: 33
    edited February 2012

    overwhelmedmom,

    hydeskate stated what I was thinking in a fairly good way.  To me NED meant that I was still 'on watch' and cancer free meant that I was done with the battle, enemy eradicated :-).   

    My biggest problem with this is that when I said NED he said "No, you are considered cancer free" while at the same time he was putting in my file that I was NED.  Why the correction?  Why give me that false sense of security?  In his defense, according to LifeMath.net (?) my chance of recurrance was about 4%.  Once again, I beat the odds (sarcastic)

     kc

    P.S. Just found out this week that I have additional mets in left kidney, liver and brain. Perfectly healthy in October to cancer in most major organs in February.  Cancer sucks!!!!!

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