I’m another TN lady (and sadly another one with very young children - seems to be quite a few of us around).
I had chemo first, but they have halted it after 4 cycles of FEC as I am in complete clinical and radiological remission (ie no tumour visible on scan anymore - just the little metal clip sat there). So operation on the 7th June, and probably Tax after that.
My oncologist also described TN as a ‘mixed bag’ in terms of how well behaved these tumours are.
I think the main thing to remember is that TN or not, the majority of us start out with potentially curative disease. Sadly some does progress - but that of course is true for the other types of tumours as well.
I haven’t had a period in a while - but i did have to shave me legs recently - quite frankly an insult to a poor bald women!
I am very interested in dietary and lifestyle modifications that may help reduce my risk of recurrence as well. Obviously all of the oestrogen type theories are not relevant to us, and ironically I was diagnosed after 9 mths dairy and soy free due to breastfeeding my intolerant baby girl.
Hi Joanne,
I would be interest to hear what supplents you are taking, one of my bosses sent me a copy of a write up about breast cancer (not sure of the source) but it has a section on what to take if you have cancer and what to take to ward cancer off. There seems quite a few things they recommend but yesterday I went out and bought Co-Q-10 and Selenium with Zinc & Vits A,C & E. One of them (cant remember which is supposed to boost your immune system. I went to hospital for my 3rd chemo yesterday and was told my white blood cell level was too long but they took another blood sample while I was then and hey ho it had gone back up overnight so I could have it - I dont want a repeat of this so think I’ll take anything that may help. Would welcome anyones comments on what they are taking.
Jo x
Dear Jo
I started off taking so many supplements I cant remember how many. I have read a lot since then and now take iscador ( from homeopathic hospital in London on NHS), Vit D3, kelp, brewers yeast, selenium, cod liver oil or fish oil, flax oil, Beta glucan. astralagus tincture, maitake mushroom extract. I am not advocating as there are so many things to take think is a personal decision.
Hope helps
Joanna
Hi Jo
Iscador is available from Homeopathic Hospitals - I get mine from RoyAL london Homeoathic Hospital, part of UCLH Trust but am sure are other Homeopathic hospitals or homeopaths who can supply. I asked my GP to refer me.
Hope helpful
Joanna
Iwas also prescribed iscador before Xmas after a gp referral (I’m in liverpooll). However my onc wouldn’t let me use it as she insists there is evidence it weakens the potency of chemo (a claim strongly rejected by my homeopath). It’s still in the fridge + I intend to start it soon now I’ve had my last carboplatin. I’m just awaiting a ct scan this wk to check I don’t need more chemo straight away, before I start.
I’ve heard that with all the government cuts, homeopathy has been seriously affected with funding being stopped in some areas. Not sure if it’s a blanket ban or whether cancer treatments like iscador are still covered??
There’s some very promisng reseach on iscador + it’s used widely in europe alongside conventional treatments like chemo + survival stats are better than ours. Worth a shot if you can get a referral 
tina x
Re prognosis etc
Most people with tnbc are offered chemo whatever the grade because if tnbc metastasises it is much harder to treat than the +ve cancers.
However tnbc does tend to respond well to chemo especially the ‘3rd generation’ chemos like taxotere and possibly Avastin.The aim is to arrest the tnbc quickly before it spreads beyond the lymph nodes.
It is true that tnbc tends to be more aggressive in the first 3 years.
It is also true that after a period of between 5 and 8 yrs[divided opinions on this]it becomes much less likely to recur than other types of bc.
Unlike other bc the prognosis for tnbc changes as time passes-the longer you go without recurrence[after 3 years] the more chance there is that you wont have one.
As with so much it is swings and roundabouts.
Take care all of you.
Valx
Hi,
just read what you said Val and I still cant understand why some hositals give Tax and some don’t (like mine). Lets hope that one day there’ll be no need for treatment as they’ll discover something to protect all women against this dreaded disease (sorry just feeling like having a rant today!)
Sod off cancer!!!
Jo x
Hi girls
thought Id pop in & say hi, im also TN although my PR was not tested ? when I asked about it doesn’t make any difference if it was which im still not sure about heard so many different things.
When I see my onc the 1st time I was shocked he came in sat down & I started talking about chemo & rads & how I was dreading chemo he said I wasn’t even considering you for chemo that threw me totally & forgot to ask some of the questions I had written down which I got to go through with my BN 2 days later, although im relieved I do feel a bit out of place as I only know 2 ladies in this position who are TN. I did come home from the hospital that day so happy but my bubble was soon burst when I was on another site for TN & a few commented in a round-a-bout way that I was a dead woman walking because of the TN. Ive calmed down alot now after having long conversations with my BN & another consultant & GP about my case & my onc conclusion who all re assured me how good he was & if he had any doubt I would have had benefit he would have said so.
Ive got my pre Rad appointment next tuesday & got my knickers in a twist again last week as I had little lump in side toward back of my neck & was having visions of everything being put on hold. My GP said its a tendent he checked all my glands which where ok he has mailed my onc to tell him I was worried about this so hoping next week all will be ok & rads will go on as planned. Think its just my mind putting things out of context as we do with this BC worrying over every pain, then another part of me thinks ive been to lucky just to be having rads & perhaps its a twist of fate & I shouldn’t think like this cos Ive been quite happy considering for the past 2 weeks bit like my old self
Mekala X
Hi Mekalar I think the reason u won’t be having chemo is because grade 1 I was grade 3 then but mine as spread to lungs so on chemo again I’m not that up on it all so I cld be wrong more will be on later to update u gd luck with rads my flew by and I was fine tn is worse in the first 2/3 yrs then no so bad but we have to get to the stage tc Laura
Hi Laura mines grade 3 too my lump was tiny 7mm all clean nodes & wide margin but then this has been the same for others who had chemo. It was pointed out that my lump had smooth edges & no blood vessels attatched which is also uncommon even with clean margins … it was also what he called ‘free’ moved about. When I had my mammo & scan I was sent home & told not to worry as my surgeon was convinced it was a fibro cyst but the needle biopsy showed some abnormal cells so I was called back for a biopsy I felt cross at the time & said to the consultant doing the biopsy why didn’t they do this instead of needle biopsy leaving it 3 weeks thinking I was OK, he told me it is so tiny they usually have trouble taking biopsy from these tiny ones & they did it took the nurse to hold it still with both her hands as it kept moving around each time he went in with the biopsy gun … thank God I was numb & couldn’t feel anything
Im also going through menopause been having symtoms past 2 years but now missed 2 months & having bad night sweats my mum was my age when she went through it too my BN said this also makes a difference to which I cant see how as the BC is not hormone positive ? I dont get that
Hi oh ok didn’t no y grade god nos I’m still learning I get flushes sweats they sd chemo does that it’s lucky u don’t have to have I wonder why my lump was 2mm but I had 2 had chemo rads 2 yrs on and back again so back to chemo every hos does diff stuff w u from Laura
Wow that is a tiny lump Laura I hope all goes well for you
XXX
Thanks I cld be wrong I need to get my paper out
yeah would be interesting to know that size is almost microscopic
Think got it wrong one was about inch and one half inch I think get conf with new measure lol
Its easy done oh you had two how are you feeling with this lot of chemo ?
hi mekelar
at our hosp we would only offer chemo if there was a clinical need… they usually use adjuvant online to help assess the risk of recurrence… although this doesnt specifically look at TN BCs as its quite old now its more helpful than guesswork.
they look at your age, size and grade of tumour and node involvement… chemo tends to work better on younger women.
as for your Q about PR status… my hosp doesnt routinely check PR but generally if zero for ER and Her2 they will normally check it but if neg for ER and Her2 but not zero eg ER of 2 and Her2 of 1+ they wouldnt normally check it… the statistical occurrence of ER-/PR+ cancer is variable from less than 1% - about 15%… at out unit from the 750 BCs diagnosed each year only 1 will be found to be ER-/PR+
hormone neg cancers are more common in pre menopausal women but they do still occur in post menopausal women… they are doing research to find out what these hormone neg cancers feed on if its not hormones and this is how they are managing to develop targetted therapies like PARP inhibitors… triple negative cancers are often found to be positive for (cytokeratin) CK 5/6 and for EGFR1, those that are negative are new sub group of 5 neg cancers.
Lx
Thank you for that Lulu for explaining this, my onc said the same. I was classed as pre- menopausal before diag, had symptoms of menopause last 2 years but now menopausal nearly 2 months of missed monthly & hot flushes & night sweats have been getting worse. Dread to think how I would have coped with chemo now that this has happened ss I know it causes these symtoms as well as the other nasty side affects.
thanks again
Mekala x