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Metastasized TNBC - what was your treatment option?

Metastasized TNBC - what was your treatment option?

Posted by Lyne on Nov 16, 2019 9:47 am

Hi! 
TNBC has now spread to pleura and lung.  Current plan of "treatment" is for maintenance:  Pleural catheter drain and low dose of capecitabine.
I meet with my MO on Tuesday and wondering if others with similar experience have received a different treatment?
I'm in southwest Ontario, attending at JCC.
Thanks
 

Re: Metastasized TNBC - what was your treatment option?

Posted by Cynthia Mac on Nov 17, 2019 7:56 am

Hi, Lyne‍ , Have you tried using the search function here on the site? I did a search on “TNBC” so I’m going to tag ashcon‍ Because she is someone who came up in one of the posts.

She may know others on the site who have advanced stage TNBC.

Re: Metastasized TNBC - what was your treatment option?

Posted by ashcon on Nov 17, 2019 10:08 am

Hi Lyne

Hello again! It's good to hear from you again, though I wish it was not for this reason. 
When did you discover this mets? 

I am currently NED still (I hope!) so can't share any personal insights on mets, but I found the information from Triple Negative Foundation (out of the US) very helpful on almost any topic related to TNBC. 
They have a community forum,  just like this one on Cancerconnections, but exclusively for women with TNBC. 
I found this discussion forum. I'm going to plow through this myself  but thought I'd share with you. 
TNBC Metastasis /Recurrence

​​​​​​I'm in SW Ontario as well... Being treated at Grand River Cancer Centre.
It's crappy that we share a similar type of breast cancer, but there's something comforting about knowing we share a geographic area. 

Reach out anytime, and I hope it's ok if I reach out to you as well. I dread this aggressive disease. When I had a prophylactic double mastectomy 2 years ago, my MO said "why bother?" She said she was more concerned with mets than recurrence or new occurrence. Those words haunt me every morning when I wake up.
Do you have any advice for me on symptoms to watch out for, or to mention to my MO? 

Ann (ashcon) 

Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Nov 18, 2019 8:17 am

Thank you both Cynthia Mac‍ and ashcon‍ . 
I will look up the link provided.

In response to your question ashcon, I found out last Monday, the 7th, when I went to my GP thinking that I had bronchitis or pneumonia because I could not breathe.
As for the real answer, I, like you, kept wondering when the other shoe would fall, when I would be told that it was back, and how the hell would I know - given that they do not test after treatment of TNBC.
It is a difficult balance, I found that talking to my support people, my friends, hubby, some family members, helped because they allowed me to voice my fears.  
For others, I adopted the "Fake it til you make it" approach.  There is no easy answer, it is difficult to bounce back after being knocked out of the park with the diagnosis.  
But you know what?  Many do not have recurrences, no mets, no nothing.  That's what you need to concentrate on, and hope for.  I can't believe your MO said Why Bother...  We don't all die of this frikkin disease, people with TNBC do survive.  If you make it 3 years without recurrence, you have a good chance, 5 years, the probability of you getting cancer again are nil.  That is something to look at.  My MO said "We treat to cure" and that's how I was moving forward.
As for symptoms, I'm a very bad one to ask as I don't know.  The fatigue and the coughing were definitely my clue this time, but then, I thought it was just bronchitis and/or pneumonia.  
I think that denial is great 😁
I'm here, if you want to reach out.  I'm not often online, but I'll get the email if you tag me.  
PS: Did you read the book that Lacey talked about: Picking up the piece and moving forward?  It did help a bit. 
 

Re: Metastasized TNBC - what was your treatment option?

Posted by ashcon on Nov 18, 2019 4:55 pm

Hi Lyne

Thank you for a little more background on when and how you discovered your mets. 
It does help me, in that it confirms what my MO has told me so far. 
I sincerely hope they discover a post-treatment soluttion for TNBC patients someday (as they have for hormone receptor + and HER2 + patients).

Did you find out anymore info on your original question about the treatment proposed for you (pleural catheter drain and capecitabine)? 

Yes, I have that book, Picking Up The Pieces. I love it and recommend it to anyone who will listen to me rant about it. Though I get it that it may not be for everyone; it seems to cater to people who have gotten the "all clear" after their treatment is done, versus those who are living with advanced /metastasized cancer. 

Good luck with your MO visit tomorrow - I'll be thinking of you. Let me know what happens. Information is power, especially when shared with others! 

Ann 

Re: Metastasized TNBC - what was your treatment option?

Posted by Treepeo on Nov 18, 2019 6:01 pm

Hi Lyne‍,

I have TNBC with mets in both of my lungs.  Initially, my oncologist seemed to be leaning towards maintenance only, that being more chemo.  But I asked to see a radiologist.  After meeting with her, she met with my oncologist.  Now, the plan may have changed.  I have another CT scan scheduled for the end of this month.  If the mets in my lungs have not grown or multiplied, then we will proceed with my double mastectomy and then radiation to my lymph nodes and my lungs.  If my lungs are not stable, then he will put me back on chemo.

While I can understand why they are reluctant to operate on those of us with mets, because the cancer has already spread throughout our bodies, my feeling is this.  I know I have tumours in both my breasts and my left lymph nodes.  Why would I not want someone to get rid of them?  Yes, the cancer might raise its ugly head somewhere else, but right now, shouldn't I get rid of the obvious culprits?  Ditto for the tumours in my lungs.

My oncologist was devastated when we discovered my mets, and I think we were both in a state of shock.  I agonised about what to do, because I didn't want to put myself through the pain and inconvenience of surgery and radiation if it was all going to be for naught.  But the more I thought about it, the more I realized that I can't just roll over.  I have to fight.  It's in my nature not to give up.  So this CT scan is going to be crucial.  I am trying to keep calm and not obsess about it, but I must admit, I can't help but think about it from time to time, and I even dreamed about it.  I am eating lots of fruit and veggies to boost my antioxidants!

Re: Metastasized TNBC - what was your treatment option?

Posted by Lyne on Dec 1, 2019 8:34 pm

Hello @Treepeo,

Unfortunately, I have already gone through chemo, mastectomy and radiation.  The mets are not so much the issue as the malignant pleural effusion.  
I wish you the best of  luck with your treatment and hope that they can fo more than msintain. 😁 There is always hope! For now, mine is to spend quality time with my family and friends and consider any option that may help with this. ❤