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Metastatic triple negative breast cancer

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Kerene View Drop Down
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    Posted: Oct 21 2008 at 9:46pm
My mum had stage IV metastatic ER+PR- breast cancer. The doctors are now saying that it has changed to triple negative breast cancer. They said that because of the hormone medication for the ER+PR- which stops the cancer from 'feeding' on the oestrogen, the cancer changed itself into triple negative. I have looked at quite a few websites on triple negative and I know that it is far more aggressive than ER+PR- but less aggressive than HER2. We found out earlier this year that the cancer had spread to Mum's lungs, spine and brain. She finished chemo a month or so ago and now only has 1 lump, which has shrunk, on her lung, but the cancer in her spine has spread to 3 vertebrae rather than just 1. The doc said chemo takes longer to get to the bones and that it will catch up and she is also on chemo pills specifically for the bones. She had radiation to her brain which the doc said 'will get it' but doesn't have her MRI till Nov so we are yet to know if that worked or not. The brain tumours are extremely small and cause her no problems at all. While there are 10+ they were found by sheer luck and the doc said it is rare to find brain tumours so early.

Now I know the prognosis is not that great for triple negative cancer. I know it doesnt respond to hormone therapy and only to chemo. I read that it responds better to chemo than the other cancers. The doc has mentioned something about third generation platinum chemo that they can try if the chemo pills don't work but Mum says this is extremely bad as it messes with your DNA. She said she will do it if she has to of course. Does anyone know anything about it?

Do you think there is any chance that Mum's cancer could be halted and she could live for years to come? Or is triple negative a death sentence? Will I be saying goodbye to my beautiful wonderful mum within the next year? Or is triple negative not so bad? Things I read on the net said the prognosis for triple negative was 13 months on average and only 3 once diagnosed with brain tumours. Mum has had her tumours for longer than that and the cancer doesn't affect her.

Sorry this question is all over the place, I just kept thinking of things so put them in. Thanks so much for helping
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ilovemysweetmom View Drop Down
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Hey there, hope you and your mom are doing well.  I unfortuantely do not know anything about platinum chemo.  They origianlly told my mom she had one of her hormone receptors as positive also, but then when it reoccured in 2005, the biospy showed it was triple negative.  We went to a new doctor and she said she wanted to retest the pathologies because she said a cancer rarely "switches" to triple negative, and that it was most likely a mistake from the original pathology report.  ANyways, I think your mom sounds like she has lots of options..that's really good.  Don't forgot to check out clinical trials as an option too.  I foudn this really good one on clinicaltrials.gov for cancer that has gone to the brain, and triple negative people are eligable.  It's the Reata trial, and it's drug RTA 744.  You might want to check that out..it's good to have as many options as possible.  Sometimes you need to make your doctor aware of them too, because my doctor was stupid and didn't know about any of the trials.  Errrghh. In terms of the statistics you listed, I dont' think those are accurate at all.  Maybe your doctors can give you a more accurate estimation.  Just spend every moment with her like it's your last, not that it will be, just saying I think that's a good motto to follow.  Just love her, love her, and love her somemore. HOpe this was somewhat helpful.  good luck to you both.  : )

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kerw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kerw Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2008 at 10:30am
I am triple negative and sure plan on living more than 13 months!!!
DX IDC 1/08, lumpectomy 2-08, re-excision 2-08;
1.2 cm, random cell in 1 lymph node
Stage 1, Grade 2
AC-T chemo (8 dense doses), 33 rads
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Galina2W View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2W Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2008 at 10:44am
We never give up, Kerene! There are people around after many many years! We just have to fight!
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Kerene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerene Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2008 at 3:20am
Oh my mum sure is a fighter! As I'm sure everyone else is too. I just can't bare the thought of my mum not being here. Sorry to be so depressing. I hope I haven't upset anyone
xoxo
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Sunny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2008 at 8:22pm
My mom was also diagnosed with triple neg breast cancer in Jan07.  She went through 8 months of dose dense chemotherapy followed by radiation for 5 weeks.  Now, 21 months later, we found out she has a small (0.5cm) lesion on her brain.  The neurosurgeon is assuming this is a brain met and has suggested she watch and wait 2 months before her next MRI to confirm it is growing since there is no swelling on the MRI and she has no symptoms.
 
Is it common for a neurosurgeon to watch and wait with a brain met.  We are not sure of this so my mom is going for a second opinion next week.
 
Like you all, I am extremely worried about my mom and her prognosis and don't know what I would do without her.  However, she is a fighter and has no intentions of giving up just yet. 
 
My prayers are with you all!
 
 
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ilovemysweetmom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ilovemysweetmom Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2008 at 10:02am

I would get a second opinion.  Also, besides surgery there is also some chemo they could try, whole brain radiation, clinical trials, and stereotactic radiosurgery (which is not actually surgery, just a very high dose radiation to the tumor and no other area).  But yeah, I would go for a second opinion.  With my sweet mom, they always would make us wait to see growth, I thought it was a dumb idea. 

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Kerene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerene Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2008 at 6:57pm
My mum contacted her original doctor and it turns out the doc she saw who told her she was triple negative got her confused with someone else. Mum isn't triple negative at all. We are very relieved
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2008 at 7:42pm
Kerene,
 
How in the world could they have confused you mum with someone else? Oh that is unbelievable, and yet we hear that form time to time. I am happy for you and her, but please don't feel that you have to leave us. If you need any help with anything...please post, and we will be here for you.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Kerene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kerene Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2008 at 1:49pm
Oh Nancy thankyou so much that really means a lot. What a beautiful person you must be. I know, it is absolutely incredible that the doctor would confuse Mum with someone else and cause her mass amounts of unneeded stress. It's not good enough but at least we know now 100% which cancer she has. Which is the one we originally thought.
Thanks so much and I will keep stopping by
xoxoxoxox
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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2008 at 2:30pm
And also think about the poor woman who was given your mum's diagnosis and now is to find out that she is triple negative.
 
My best to you all.
 
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2008 at 2:40pm
Caryn,
 
One can only hope that dear woman finds this site and all the wonderful, loving caring women like you who will guide her through this part of her life.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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