Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
2301

Sorry, Di,
I can’t give you any more advice either but bumping again.
Perhaps worth phoning the Helpline? I don’t know if a second opinion is called for here or not. Some people are much more informed on trials etc for TN than I am so hope bumping this again may help you.
(The place the nodes are in is called the mediastinum - it is just behind the sternum which is why you heard that-don’t know why it’s called that)
Hope you get abetter answer
Lavender
xx

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2302

Just got into this thread. How are you doing ? I wish you well. I think we are all very different in the way we respond to chemo and radio. In 18 months I have had 3 operations chemo twice radio twice. TNBC first time Grade 3 Stage 3. Chemo X6 FEC, followed by radio for 3 weeks. 5weeks after treatment upper chest recurrence Metaplastic TNBC grade3 Stage 3. Operation Chemo Docetaxel and Carboplatin X4, radio for 4 weeks. Nearly 4 months later recurrence under left arm in lymph gland and on chest both areas had radio previously. Metaplastic TNBC. Had operation and 15 lymph nodes removed. Dr thinks chemo and radio have not helped. I am positive and not sure what to do. I just wish there was a targeted therapy for TNBC. Mentally I am coping but physically it is hard.

Keep positive and take one day at a time. Today is so important and is good.

Best wishes

2303

Hello ladies, it’s been a long time since i’ve posted on the forum, so i’ll give a quick update. Stage IV, triple neg diagnosed with secondaries in May last year. Had Carboplatin which nuked the cancer and i’ve been well since October 2012. Hi to you all. Just thought i’d drop by because there’s a promising new TN treatment called copper depletion therapy, i’ve asked thew girls at BCC about it and will raise it my next onc appointment, but i thought this article may make you smile, 5 1/2 years!! http://weill.cornell.edu/news/releases/wcmc/wcmc\_2013/02\_13\_13.shtml

2304

Just bumpIng this for some of the new ladies with TNBC secondaries or recurrence

2305

Thanks Moondog! X

2306

Would be good to start this thread up again. I’m in desperate need of support.initial diagnosis jan 2007. TN, lumpectomy & radiotherapy only. Recovered great and got onwith life then Diagnosed with bone mets 3 yrs ago then last April had secondaries in lungs and ? tiny spot in liver. Had months of chemo then had scan in December 20012, liver clear lungs only tiny mets,bones stable. All good, scan in April even better! So happy!
Then scan last week showed although lungs ok two 2cm mets have grown on liver. So shocked as feel better than ever. Starting on oral chemo Xeloda on 7th aug. so fed up and scared. Is this a downward spiral?would be good to chat to ladies in similar situation. Much love to you all who are struggling with this awful disease. X x

2307

Hi moondog I was told negative but just found out in was progestrone positive. So double negative ?? Don’t know what difference this makes am I still higher risk like triple negative ? I’ve never been offered any drugs 3 n half years after diagnosis lumpectomy auxiliary clearance chemo n rads was told aggressive but very interested in the link about copper is it available i don’t get to see oncologist only gp now so don’t know what power they would have rozita x

2308

hello everyone found out 3 weeks ago i have triple negative secondaries in my liver, lung, nodes in my neck and in the breast bone aso have a mass on my chest wall but there not sure what that is at the moment, i would just like to ask a question my first primary and 1st recurrance was ER+ but with this recurrance they say it is triple negative so can cancer cells change or would this be classed as a new cancer thanks claire xx

2309

Hi Clare I have only just found my way to this thread
Your case sounds very similar to my own.I was first dx in 2007 with small lump in left breast I had WLE and rads and it was ER+ 5/8. In 2012 dx with secondaries to the sternum bone and soft tissue mass to chest wall and now it is weakly pos 2/8 so classed as TN so it would seem that receptors can change all the time.
I wish you well with your treatment
Linda x

2310

I was hoping to not join your club but here I am almost exactly a year since first diagnosis.  I start GemCarbo chemo for local recurrence in neck lymphs.  Onc says this should be easier than FEC-T (which completely floored me) but any tips/comments gratefully received.  

Thanks!

TJ x

2311

Hi Cressida

 

I have been trawling through the site hoping to find someone who has gone through the GemCarbo chemo. Unfortunately I have just been diagnosed with secondary breast cancer of the lymph nodes- 1 node affected even though I had been told I had clear margins :frowning: I am due to start Gemcarbo this Wednesday and I have tried reading up on it- I had FEC x6 and it didnt work- was just about to start radiotheraphy when they found the lump on my collarbone-I also suffered badly with low blood counts and ended up in hospital many times but what Im concerned about is that my onc has said that I wont need the injections??.. I have mentioned this to my macmillian nurse and she is going to chase it up for me- considering Ive only just been told today what is exactly wrong with me…by the way this secondary was a blood blister on 1st examination by onc- then my liver had lesions ( which I didnt- liver clear) so now shes telling me that it can be “controlled” by this new chemo

 

So the news has devastated the family and have been through 2 weeks of hell- up to now I feel as they have got everything wrong with me- lump found after surgery was scar tissue ( I had Grade 3 IDC stage 3- WLE & SNB)- was told I was clear etc- sorry just having a rant cos I vowed I wouldnt google any information and as it is I cant find any info directly aimed at what Ive got so have emailed the mods on here

 

Please keep in touch as Ive gone from being given a few months etc to god knows what timescale now

 

Love n Hugs

 

Sandra xx

2312

Hi,

I have been trawling through many pages of this threat to look for references of Internal Mammary nodes and Gemcitabine and Carboplatin chemo and on the last page I read ( as i started pages down :slight_smile: ) - I find both!! 

 

After my primary diagnosis in May 2011 ( TNBC, 4EC + 4Tax, Lumpectomy, full Anx clearance, 35radiotherapy), I was again diagnosed in Nov 2013 with a local recurrence in two lymphnodes. One interpectoral and the other one in the internal mammary lymphnodes. 

I had surgery on 2nd Dec 2013 to remove both.

The internal mammary node - had started growing into the rib and a piece had to be removed and was apparently the easier one. Unfortunately the one under the pectoral muscle had grown towards blood vessels / nerves and a nerv by my arm had to be cut. This was much harder and i get the impression - although they have removed everything visible, they were not happy about the margins.

 

Suze, I can imagine that a weird position of the node is difficult to remove. For me, i am glad its out. i was in pain before the op and the fact that it had started to invade into the bone was not going to be getting better soon. the operation however was also much more involved that i anticipated. 

Can i ask - how did they find this internal node? in my case it was only found on a PET CT scan, which was initiated due to the interpectoral lymphnode they found on the ultrasound! I was in discomfort for months, but they couldnt find anything ( u-sound, mammogram, feeling, etc), so it was always put down to longterm radio therapy pains.

 

Anyway, I am starting tomorrow, 9/1/14, ( today, i suppose now ) the first 3-week cycle gem/carbo combo. After reading the most recent posts, I am glad I decided not to go to work during this chemo - unlike last time - simply due to infection risk ( ta, Cressida!) !   

 

Rexi 

 

 

 

2313

Hi all
I was originally dx in 2009 with tnbc, had lumpectomy, FEC and 25 radio. Got on with life…i then had a local recurrence in dec 2012, followed by full mastectomy, reconstruction and 5 (I gave up) docetaxel, just before Christmas I was dx with lung mets, it has taken a while to get my head together, I fact I still don’t think it is, I have just had my first round of gemcarbo, my phobia of needles is worse than ever but trying to manage the new drug without a line, at the moment I am feeling very negative about it all, hope I can find some positivity here, or at least some mutual support.
Caroline x

2314

Hi Caroline and welcome to the BCC forums

Along with the support and shared experiences you will find here please feel free to call our helpliners on 0808 800 6000, lines are open weekdays 9-5 and Saturday 10-2 for practical and emotional support

You may find some of our other support services such as ‘One to one support’ and secondary ‘Live chat’ helpful and you can read more about these via the following link which also contains information about secondary breast cancer:

breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=secondaries

Take care
Lucy BCC

2315

hi Caroline,
very sorry to hear you are here, too. this thread has gone a bit quiet compared to a few months ago, not sure where they are all hiding.

did you have chemo after your recurrence in 2012, too? which one?
How are you doing on gem/carbo? i had my first dose last Thurday and some nausea since, but nothing serious, and mainly exhaustion.
I cannot imagine how stressful the treatment must be when phobic of needles, too. i certainly dont like them, but even less since they have more and more issues finding good enough veins - so i gladly opted for a port. which - since the insertion last week - is looking very good compared to the first time - i was black and blue then - nothing at all to see this time.

Regine x

2316

Hi Regine,

Just found this thread, fairly new to the forums. I posted earlier today on the Bone mets thread as onc. has just written it on letter to GP - but did not tell me last week where he thinks they are!! I was dx last October, 13 years after primary triple neg - mas, fec & rads. My GP spent the summer trying to find out what was causing fatigue & odd blood test results. Tumour in abdomen causing slight stress to right kidney.Done 8 cycles of capecitabine with sore hands & feet - but no blisters for over a month!! Now being changed to Paclitaxol in a few weeks as onc said disease had progressed, he was not very helpful as I left feeling I had been interogated as to why I was not on Denosumab.

I will see GP tomorrow for bp check, he has always been supportive. I will definitely keep an eye on this thread.

Monica

 

2317

Hi Lulu,

Thankyou for your reply & I hope your treatment goes well. Saw GP yesterday & BP normal - at least something is!! He agreed that letter from onc. is lacking in detail & he noted the inaccuracies - I did not ‘deny back pain’ I have no back pain!! Luckily I have a good, communicative GP - he asked if I had been avoiding him as not needed to see him for 6 months!! 

I feel better in myself - could be down to chocolate!!

Hugs to you,

Monica

2318

Thank you Truddles,

I am very grateful for your explanation there is so much terminology to understand!!

Monica

2319

Hi Lulu,

He did say to try not to worry too much!!

I had already told him that I had written a letter to the Cancer Centre requesting to see my original onc. & he said I needed clarification of their previous findings.

Hugs to you,

Monica xx

2320

Well writing the letter worked!! I had a call today from one of the oncologist’s secretaries to say that I will be seen by my usual onc. next Friday. So, will get the answers I need in a caring way.

Meanwhile I am enjoying the ‘chemo break’ by travelling around visiting friends.:smileyhappy: