Triple neg, BRCA1 - recurrence

Hi everyone, I was diagnosed in March 2009 aged 29 with grade 3, triple neg BC. Had lumpectomy, chemo and rads which finished in November.

Was rediagnosed last month with same type of cancer, same breast but in completely different area, and had mastectomy two weeks ago. Coincidentally I have also discovered I’m BRCA1 (had the test in April, results came back 3 days after rediagnosis) so am provisionally booked in to have the other breast removed in September.

I am waiting to see my oncologist but have already decided against any further chemo if that’s what she says. My surgeon says there is some evidence that BRCA1 cancers don’t respond well to chemotherapy (which would obviously have been more helpful to know last year!) and I wondered if anyone else had heard the same thing? Or have any other insight into BRCA1/ triple neg treatments? I know it’s a bit of a grey area.

havent heard that one before francesca what i do know is that grade 3 tumours respond much better to chemo as do triple negative tumours and in terms of options being triple negative is very limited in the treatment you can have.

i know if i was in your shoes i would be having the chemo but i know it is your own decision to make.

have you spoken to your onc about the possibility of having PARP inhibitors which are showing very good results in research trials for people with gene mutations and also TNBC.

your onc should be able to discuss with you how effective chemo is in brca1 mutations… as far as i am aware is chemo would be the gold standard treatment for somebody with your diagnosis.

take care

Lxx

Aren’t parp inhibitors still being trialled? Do you know when they will likely become available to all?. I have tnbc secondaries, and private medical insurance, in case that helps! Also do u have any links that tnbc responds better to chemo? I’ve never found any evidence of that and mine doesn’t seem to be responding much! Neither for poor Lovely Hayz, RIP xxx

PARP is indeed still at the trial stage-phase 2. I was lucky enough to participate for 6 months, and we had some reduction, stability-and then progression, which meant that I had to come off the trial and revert to conventional chemo.

Entrance criteria is tough-and they are having difficulty recruiting, in part because of this. You can only have tried 2 chemos before, or would be excluded-so if you have tried several (which sounds as if it’s the case), you would not be accepted.Private cover makes no difference-all you need to be is BRCA1/2+ have secondaries, and have only had 2 chemo types maximum in the past.It looks like it will be a long time before they become widely available, as they still have another phase of trialling-at the moment, the trialling is simply examining the optimal dose, so there is still a lot of work to be done before (“if”?), it ever becomes available.

I am triple negative and went to the Marsden last week for a second opinion as not happy with inconsistency in my onc’s. They recommended what chemo I should go on next which was what I was wanting to know but they are also considering me for two trials. There is only a 10 - 20% chance that I meet the criteria so I am not getting up hopes up. They have to get a sample from your hospital and check it so will take about two weeks until I know. I have had 4 chemo’s so far so that’s meets the criteria for these ones.

I haven’t got the info on the trials with me at the moment but will post later if anyone interested. Perhaps a referral to the Marasden for trials would be worth thinking about Scaryfox particularly if like me you have not responded to the chemo’s so far. I certainly will give it serious thought if I am accepted.

Love Anne x x

I was diagnosed with Grade 3 Triple Neg Breast Cancer in 2007. Had Neo Tango trial, mastectomy and radiotherapy.

Went to onc as worried about a lump in neck - she thought it was because I had a cold and told to come back in three months. Went back and another lump - much larger - has appeared on other side of neck. Her reaction was wow!! Next day CT scan and today aspiration. CT scan shows many lymph nodes involved. Awaiting results next Wednesday.

Her suggestion was to go for chemo but unaware of any new developments re: chemo. Had taxol and gemicidibine combination which reduced the tumour, then cys and epi combination but they didn’t seem to work.

As far as I know triple negative cancers react better to chemo as the cells are aggressive little buggers.

Still in shock - scarred and worried about the future. Am I right in saying that spread to lymph nodes in neck is referred to as regional recurrence and not considered to be secondaries?

Exhausted about it all - happening very quickly, which is good - but not liking the outcome.

Regards
BaxterandNemo

God it’s all very complicated isn’t it? I’m seeing onc next week, I’ll know more then. I’ve had chemo once, I really don’t want it again. Perhaps you can understand my reluctance to have it when it was less than a year after I finished that the cancer came back. My surgeon said it was probably always there, just microscopic. Am hoping once I’ve had the other mastectomy then that should be it. I’ve got all the headache of ovary scanning/removal to come in a few years, I’d quite like to just have the next few years worry-free to be honest!

Baxterandnemo, I have a recurrence in my neck and chest lymph nodes, mostly on the same side as my primary bc. But I have one lump on the opposite side of my neck, which makes it secondary (stage 4) apparently. If it weren’t for that it would be considered stage 3 (regional recurrence) I believe, and still potentially curable. As it stands I am having chemo to try and control things, not sure if it’s working yet. X

Well, have had it confirmed. I have four lymph nodes in the neck - both sides - and two in the chest.

She didn’t mentioned mets or secondaries but she basically said it is not curable and we need to look at treatment now and for the future. But good news is that it has not spread to any major organs - and hopefully not for sometime!!!

Have decided to go on the TNT trial for carboplatin and doxetaxal(?). Start next week.

Quite numb at the moment - very scared of the future. Frustrated as well because I feel I should be doing something special with my life, do things I have always wanted to do - but I don’t know what I want and I especially can’t afford it or practically do travelling as I have a 13 year old son.

Just can’t get my head around it yet - bad enough with the primary.

Love to all
Kelly

Dear Scaryfox

How long have you been on treatment? Can you feel the nodes in your neck to see if they are reducing in size?

Hope all goes well. X

Kelly really sorry to hear that… i hope the new chemo kicks it into touch for a very long time.

Lulu xxx

Dear Kelly & all on this thread, not quite sure I fit this forum exactly, but as I have secondaries in neck lymphs (opp side to primary BC) plus in lung pleural, both sides, I sort of do.
I was diagnosed in March this year, 14 years after initial BC and was also told it isn’t curable, but is controllable. My onc likened it to the control that diabetics and asthma suffers have to have…this lightened my heart let me tell you!
I had my chest drained, both sides as I was very breathless. I think a couple of litres each side was removed…this made me feel sooooooo much better!
I had 6 x docetaxol and the neck lumps & nodules started reducing after the first dose, which my onc was pleased about as she wasn’t expecting it quite as soon.The lymphs in neck are almost back to “normal”.The gradual reduction of these lumps is what kept me going thro’ the chemo, but must admit to being a bit paraniod about keeping an eye on them and on bad days I’m convinced they are growing!!
I had a scan after treatment ended (July) and all was well re lymphs.There is still some fluid round lungs and I was told my lungs wont ever be as good as they were and breathing will always be a bit laboured.
I’m not on any other treatment at the mo,waiting for my first 3 month check up and keeping everything crossed that things are ok.
How are you doing, are you on docetaxol? I found once treatment started I felt a bit more in control, think it’s because I felt something positive was being done, also my onc was very matter of fact about things which reassured me somewhat.
It is very, very scarey tho!!
My youngest daughter is expecting a baby any day now,my eldest is getting married in April, so lots to look forward to…

Hope you are all doing well, let me know,supporting each other helps so much,
Sandra x x

Hi all, Sandra your thread has just caught me, I think I may have the same thing. Was dx Oct 08, WLE, Chemo and the works and triple neg. Couple of months after chemo, nodes appeared in neck/shoulder, only on same side as primary. I have been on Capecitabine for 7 cycles and they said they were shrinking moderately so I was really pleased. We went to USA in July and I picked up chest infection, all sorts of infections actually, but that one wouldnt shake of no matter how many more courses of antibiotics they gave me, it eased but never actually went away. Week before last I had awful sudden pain under ribs, really sharp. I let it go for 4 days or so but was becoming bit breathless so they arranged a chest x ray and blood test on Monday last week. I ended up in hospital last week for 5 days. They drained some fluid off lung pleural and am awaiting the results to see if its cancer or infection, think I already know the answer. It has made me really breathless since the drain although the pain has gone, apart from the bruising where it took 9 attempts to get the fluid. I have a terrible cough, usually at night when I move. So its a waiting game again to see what the results say, they did say they would ring today, but havent heard anything and to be honest Im too scared to ring them! Are you breathless at all or do you have a cough? I have appt on Thurs to get repeat chemo but I guess that may be halted and will be put on something else, oh the joy! Hope all goes okay for you at your 3 mnth check up. Debs x

Hi Kelly, in answer to your question I had 4 cycles of capecitabine, which seemed to keep my lumps more or less stable, now I have had one cycle of carboplatin, (the plan is for 3 more then reassess) and just in the last week or so my largest lump has dramatically shrunk to about half the size, but strangely, the smaller lumps on the opposite side seem to have grown! Very confusing.

As they are lymph nodes they can grow or shrink daily I know, but it does seem strange that the two sides are behaving differently. Maybe I have 2 types of bc! Or maybe cos I focussed my visualization exercises (at penny brohn) only on the bigger lump… Perhaps I need to do the other side now!! Anyway 3 more carbos to go so here’s hoping.

Smiley/debs so sorry to hear about the infections and have fingers crossed for you xx

Hi Debs, I did have a cough before the drain was done, it got better a couple of weeks after. The Doc who did the aspiration warned me the actual draining process would irritate the lungs, making me cough…that could be the same with you…? (I had my fluid drained by aspiration from my back because they couldn’t get the tube in thro’ the side due to scar tissue and yes there were cancer cells in the fluid, but not in the lungs.)

Did you have an xray after drainage to check lungs had re-inflated ok?

I slept sitting up for quite a while as laying down made me breathless & cough. The breathlesness gradually improved during chemo, till I could lay down ok. (I bought a V pillow which made sitting / sleep more comfortable.)

I’m still breathless in comparison to how I used to be, but better than I was…if that makes sense!!
Good luck with your test results, I’ll be thinking of you, let us know how you get on…Sandra x

Hi everyone

Thank you so much for replying - so excited that someone listened and posted a comment - does that make me a sad person!?

Anyway - start chemo Thursday (tomorrow). Saw Trial Nurse and am told I will be on the carboplatin for 6 cycles.

Have decided not to work through chemo this time - but a little worried as to what to do with myself - I don’t want to think too much about it.

Good to hear that the carboplatin seem to work well - even though slightly lobsided. What is this Brohn? Will need to search the net for this one.

Let’s keep fingers crossed for check up Sandra - you are right - I am happier (if that is the right word) that chemo is starting as I feel that I have waited too long for it to start. Any news on the baby yet?

Debs - sorry to hear what a bad time you have had - have you heard yet?

I have read that you can have the nodes removed from the neck and chest, but when I asked the nurse she said they would not consider it. Has anyone else heard of this?

All the best - Love Kelly

Hi Kelly,

Penny Brohn is a complementary cancer centre in Bristol. I have posted a thread elsewhere on this forum, they help you with diet, counselling, relaxation methods etc… It’s very good.

Good luck with carboplatin, I have my second one tomorrow. The main side effect of the last one seemed to be wanting to sleep loads… Didn’t have any sickness etc. I think my shrinkage maybe started before this though… Seemed too quick, maybe from the 4 cycles of xeloda/capecitabine. Bit worried about the lumps on the other side though… Hope they respond to something! I guess there are lots of chemos to try but don’t want to exhaust all my options too soon.

Can’t believe anyone manages to work through chemo - hats off!

X

Hi everyone,
Kelly, how has your treatment gone today? Hope SEs no worse than sleepiness (same as scareyfox), that way the time will fly by!!

scareyfox, have you been to the Penny Brohn centre for any of their courses? I’ve had some of the literature and thought it looked good, just can’t seem to fit a visit in though!Good luck for Fridays treatment, hope it’s ok.

Debs, how are you, what news? ( My fingers, toes, etc. are crossed).

Lulu, francescap29, hope you are well?

BABY UPDATE…contractions started midnight Wed, stopped 2pm Wed, started again 5am Thurs, but still nothing!!! They seem to get to 10 min intervals, but no further than that.I think Emily (my daughter) is going to call the midwife to ask her advise…will keep you posted!

Love, Sandra. x x

Hi everyone. It is done. New system in the chemo ward. I have to visit the Dr on a Tuesday and have chemo on a thursday. Two days I know but it saves hanging around.

It went OK. Just very tired now. I think it is because I have not slept well for some time now. I have night sweats still, have radiotherapy damage to my ribs/sternum (Trieze) but this may have been aggrevated or triggered by a body surfing accident!!! So am in a lot of pain if I don’t get the painkillers at the right time and wake up in the middle of the night in pain and then have to wait for the painkillers to work. Ho hum!!

See how we go. Looked at the Bristol website - we have a local Coping with Cancer centre, but it doesn’t do as much as Bristol. Will definitely do some massage, joga this time.

I did work through chemo last time, but I think I paid the price later on - couldn’t cope at work. My brain doesn’t seem to function like it used to.

Give the chemo time - express your concerns to the onc - push for answers - I am always afraid of waiting for them or sounding off to them my concerns but what the heck, it is my life!

Speak to you again. Let us know about the baby Sandra.

Love
Kelly

Hi ladies may I join u on this thread please? I’m another triple neg lady and I’d like some advice if poss. Brief history- dx in January + had mx followed by fec-tax chemo. No rads as clear margins. Within weeks of my last chemo in early July, I developed a rash on my recon. Docs weren’t concerned but it turns out it’s the cancer back- it’s obviously resisted the chemo…
I’m having major surgery to remove the skin mets on 31st- followed by rads. I’ve had allsortsof scans + a few small anomolies have been picked up that they want to monitor. I’m nrvously awaiting results of my brain scan coz I’ve been having dizzy spells for about 2wks + also dome strange sensations in left cheek. Doc assures me this us all normal after taxotere.
Anyway, I’m after some advice about trials please ladies. I’ve read about parp inhibitors on here- can any1 tell me about them please? Also is it only the royal marsden that does them?(I’m in Liverpool). I am keen to go the marsden if it is likely benefit me in some way. I’m only 32 with a 15mth old son so I’m desperate to stick around for as long as poss.
Any advice from you lovely ladies would be appreciated :slight_smile:
thanks
tina xx