Triple Negative - chemo before and after mastectomy?

[Guest user]

Parischloe hi,

I dont have any experience of tn tumours but wanted to let you knw there is a very active thread used by ladies taking capecitabine. This is under living with secondary breast cancer. secondaries treatments and medical issues. you may have already found it! Most people find capecitabine an easier option than IV chemotherapy. Its less likely to affect blood counts etc. Many people find it causes very dry and sore hands and feet. I have been fortunate and capecitabine has held things stable for me for nearly a year and counting! I really hope it is as sucessful for you. pamx

[Cressida]

ParisChloe - what a sad story. I wish I could say something more useful to you. I had my Mx in the hope of minimising any spread. Maybe they are advising you against it as they don't think you need the extra hassle of more invasive treatment? I am having the GemCarbo - but no way to evaluate it's effectiveness until I have scans for secondaries after I finish as the main lump is gone. I am happy to wait till then as I think it is the only way for me to get through this extra chemo, but you don't have the luxery of denial. I know there is a thread called triple negative secondaries on here in the TN section but I have not looked at it for a while, so I am not sure how active it is - maybe try there for some support? I know a lot of ladies on there have perservered with secondary chemo for many years and have had reasonable success. Please feel free to message me, or write on here - I check most days at the moment whilst I am having chemo. Sending you hugs, doesn't seem enough, but sending them anyway, xxx

[Cressida]

I just checked - the TN secondaries thread is in Living With Secondary Breast Cancer, not TN.

[Louise_BCC]

Hi parischloe5

Welcome to the forums, I hope you get lots of support here. Whilst you're waiting for others to come along, I just throught I'd drop you a line with a link to our factsheet on Capecitabine which you might find helpful to read:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121

Hope you find this useful.

Kind regards.

Louise, Facilitator

[Guest user]

hiya cressida i just stumbled apon this website and thought i would drop you a line....as far as im aware you can have more chemo of a different drug. I empathise with you and understand i to have very agressive, ever groing tumour measuring 12 + cm. Im a thirty year old who was diagnosed last september with grade 3tn and positive node involvment within weeks i was diagnosed with bone mets.....as the cancer is so aggressive I had no option of a masectomy and instead commenced me on fec-t. This didnt work and i developed a third tumour and the others grew. So they decided to comence me on paclitaxel Which I took two very scary and life threatening reactions. So as it stands i im five months into treatment and it has not even made a dent or stopped any progression. They sent me to see the breast surgeon last week and she clearly told me if they were to remove the breast it would be purley for symptom control!! so now i find myself from what i can gather trying a last shot chemotherapy tablet called capecitabine! can anyone shed any light on my situation the understanding im getting is im not going to get good few years i hoped for as in my oncologists words my cancer is not behaving the way it should! when asked if i was to stop the treatment as it has been awful they gave me a year!

[Cressida]

Mandy - really pleased you have good results. Everything crossed for you that CT scan will be good news too, xxx

[mandyp]

Hi Cressida
I'm also triple neg grade 3 ( showed as 5cm) and was given option of chemo first with the hope that it would shrink and I'd get away with lumpectomy or mx first and then chemo. Despite being told that the aggressive types often respond well to chemo I went for the latter and
Had mx first. I wanted it gone. As you know, now on December thread chemo and having 3 FEC and 3 t. Incidentally when tumour removed it was only 26mm so almost half the estimated size! And no lymph involvement. Just need results from ct scan now as back has been really painful - am hoping and praying it is just post op and tension.
Lots of love
Mxxx

[Cressida]

Meerkat, I have pm'd you. Hope you are focusing on recovering from op. Let me know your treatment plan when you are ready, xxx

[Guest user]

Hope you had a god Christmas and New Year Cressida. Sorry not been in touch, Been so busy trying to get prepared for Xmas, daughters bday and ready for today's op. Is your next chemo around now?

[Cressida]

Meerkat - I am so sorry you now need a mastectomy on top of the surgery you have already had. I never had any other other option due to the prize winning size of lumpy, but it is a nightmare to be given hope and then have it taken away. It sounds a bit trite, but the op is not so bad compared to the other stuff they do to you. Be nice to yourself and try to enjoy Christmas. Denial is now my new friend and I do anything I can to aviod thinking beyond what I have to deal with next. Really hope they get it all this time, will be thinking of you, xxx

[Guest user]

Hope your chemo went ok today Hun, and hopefully it means you will be feeling ok for Christmas. I found out today that my surgery is planned for the 8 Jan, so am gonna try n enjoy Christmas. Xxx

[Cressida]

Looks like we have a similar nightmare. I am so sorry you find yourself in this situation. I have not had any scans for secondaries cos it would not make a difference to the treatment apparently. So I am just keeping my fingers crossed. Maybe they will suggest GemCarbo to you too. I have just been for my chemo induction and am due to start tomorrow but they have lost my notes. How we laughed. I have managed to pull myself together a bit and only needed 2 tissues today so far. I would say focus on the surgery first then find out about the chemo. I try not to look too far ahead these days, which is very different from my previous approach to life. I didn't even read the GemCarbo leaflet until I was in the waiting room today. I did enjoy my break and would recommend fitting one in whenever you can. Lets keep in touch. Good luck, xxx

[Guest user]

Hi Cressida, Rattles pointed me in the direction of your thread As although my situation isnt completely the same, I can understand your situation.
My situation is that I had my first diagnosis of TNBC in March, unlike you I had surgery including ancilliary clearance first followed by adjuvant chemo FEC-T 3 of Each. I finished chemo in September and finished 23 rads on 8 November. During rads I found a new lump which was confirmed as cancer 29 Nov. Couldn't believe that I could get a recurrence whilst on treatment! Like you it loks as though the chemo didnt stop a tumor growing, so the next step for me is a mastectomy, had WLE first time, followed by more chemo, although wont find out my regime until after surgery.
So I can completely understand your feelings of feeling unusual, and also that feeling of pure dread having to have more chemo when we havent properly recovered from the first lot.
I really hope you enjoy your break, I've just had one myself I and it was the perfect aversion therapy xx

[Cressida]

Hi Rattles and Lulu,

Think I have gone round a complete circle of hysteria and depression. Working myself up so much more than last time, because now I have some idea what I have signed up for. It does help that you have taken the time to think about me and to post encouragement. Only people who have had chemo could appreciate the horror of having it again.

At the moment I am feeling a bit better, I have been to GP for anti depressants (although I have not taken them yet...) and I am off to see MacMillan psychotherapist today. I have arranged to visit the chemo suite again, like a newby, so they realise that I still need looking after and that I am not some old hand who they don't have to worry about. Then I am going away to try and enjoy what is left of my health. Christmas market in Bruges. As the chemo fairy is coming for Christmas I thought I should have an early one. Organising myself seems to have helped - at least I have done what I can. Probably crash again when I get back from Bruges. Look out for hysterical posts next week...

Thanks again for thinking of me, xxx

[Lulu34]

Cressida

i kniw that feeling its almost like you dont quite fit in anywhere... Not serious enough to have secondaries but bud enough to have to go theough treatment again.... I had E-CMF first time around and carboTax last time same as rattles and found it pretty hard going but my onc thinks most of that was down to the tax rather than the carbo so hope you dont find it too bad... Not sure what the SEs of gemcitabine are.

i was just finishing my chemo when rattles was going through it and although i wish she didnt have to go through it i found it very helpful having somebody having a similar experience.

good luck
lulu xx

[Rattles]

Hello Cressida,
I am not surprsied you feel bad. It is a terrible blow and you have barely finished the last lot of chemo........
The way I coped was to take it one cycle at a time and to say to myself (not family), I could stop at any point I wanted. My way of trying to maintain some control. In fact I did stop at 5 and did not have number 6.
I did 4 ec and 4 taxol the first time, and then 2nd time carboplatin/docetaxol. Platinum-based chemos meant to be good for triple negative. You won't find many women with primaries on this regimen or yours and you are right you feel like a lone sailor. It was not even 6 months ago that I was (almost) where you are and I remember how bad I felt (which is why I want to offer you support)! Ive told you how bad I felt. I came across a few other ladies on the thread titled 'new primaries/local recurrence' andspoke to a one-to-one volunteer, who in fact had a similar issue to you so why not get in touch with the BCC helpline. I would seriously reccommend it. Try and hold on to the fact that chemo is not for ever and this is a short period of awfulness to invest in the best possible chance of a healthy future.
I promise you will get through this!
Rattles

[Cressida]

Thanks Rattles. I really do feel quite bad but it does help that people are thinking of me.

I have posted a new thread about GemCarbo. I am not sure where I fit at the moment as I have no evidence of secondaries but my treatment is different to those ladies starting treatment for the first time. Floating about in a boat all by myself. To be honest - having second thoughts about going along with the plan but I am sure I will pull myself together and get on with it in the end. Keeping in reserve the fact that they can't actually make me do it and I could stop it half way through if I want to. Can't tell my family/friends this though. I am really glad you managed to do it and I will have a go.

x

[Rattles]

hello cressida,
came on to see if you had posted and sending you as much cyber support as I can muster. i dont know exactly how you feel, but sure know how i felt when i was told needed chemo again, and i had had a longer gap - in shock, alone, afraid. You will get through this. Like I said, I really did not believe I could do chemo again - I had had 3 lots of surgery in the preceding 8 weeks, 3 stints in intensive care. I honestly thought it would finish me off, and here I am. just returning to work. What helped me was knowing that others had been down a similar road. For what its worth, carboplatin should be far easier to tolerate than docetaxol.
thinking of you. Rattles x

[Cressida]

Well, I am due to start gemcarbo in 2 weeks. Gemcitabine and Carboplatin. Can't really take it in yet, but my Onc said she would give it to her sister if she had the same cancer. I did ask if she actually likes her sister and she assured me she does. First I have to pee in a plastic pot for 24 hours and have some blood tests, then an ultrasound of my arm to see if I need another line.

I honestly could have cried all the way home but there were no taxis so I had to get the bus.

[doggirl]

I'm tn, but had WLE before chemo. Have nothing useful to add but good luck for tomorrow x

[Cressida]

Hi,

Rattles - thanks for being honest enough to say that the chemo is about as scary as the cancer. Maybe the cancer is harder to imagine but, when I was expecting more taxotere I thought I would have to be tied to the chair in order to go through with it. You are right that it is all about the risk of spread/recurrence. If I could understand the risk then I would find it easier to make a decision. Lets hope my Onc has something useful to say tomorrow.

Lulu - thanks for the link to the protocol. I had an older version so that is really helpful. Regarding the clear nodes - I can't help thinking it is a bit too good to be true and a little gremlin in my head says that it must have leaked out somewhere - maybe not through my armpit. I have gone slightly bonkers over the course of this year and don't have too much faith in the likehood of the NHS being thorough. Do you know if there are any scans or tests that I could ask for that would check again for spread? I realise that any rougue cells may be very small after the chemo and that there is no way to be absolutely sure but I keep finding out that there are things they could have done that I did not know about. You don't know what you don't know.

Thanks both of you, I will post the outcome.

C, xx

[Lulu34]

hi Cressida

sorry to hear of your situation.... i havent come across anything similar over the years.

traditional treatment is surgery followed by adjuvant chemo... the neoadjuvant chemo is a new development over the past 5-10 years.... but it is usually given instead of adjuvant chemo not aswell as it.

i think one of the things in your favour are the fact that your nodes were negative which is very surprising given the size of the primary so thats a real positive and the fact that your margins were clear.

i had hormone pos bc grade 1 in 2006 in right breast and then TNBC in left in 2009 and a recurrence in chest wall in 2011.... only had chemo with no 2 and no 3.... both times was adjuvant following WLE. the first lot of chemo was E-CMF x 8 and then i had taxotere and carboplatin x 6. i was found to be a brca2 carrier after no2.

you should be able to get tested for the BRCA genes based on the insitute of cancer research guidelines having TNBC under 50, but some places will only test people with TNBC under 40.... but if you direct your team to this guideline they miht be able to do it....
http://www.icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/22778.pdf

Rattles.... im surprised yoru team werent able to let you know whether it was anew primary or not... basically for a cancer to be in bothe breast its has to be two primaries unless you have had positive nodes and spread through your system to the otehr breast which is very unusual without any system mets so i would say its almost 100% cetrain to be a new primary... most places will class cancer in both breast as two primaries particularly for assessing risk in genetics etc... bilateral BC = two cancers.... in women with a brca 1 or 2 mutation the chance of getting a second BC in the other breats is around 50%.

Cress good luck with your appointment.... write down your list of questions for your doc.... im sure you will do anyway.
best wishes
lulu x

[Rattles]

Hi Cressida,
My situation is a bit different to your, but similar enough that I thought I would share it in case it helps.
I had triple neagtive b/c diagnosed in left breast in June 2009. Had chemo (4 EC and 4 Taxol (NOT taxotere), then a WLE and then rads. Then a year later found I had a brca1 mutation, so this year had bilateral mastecomies. A tumour was found, this time in righ breast. As the tumour was exactly the same (grade 3, triple negative with lymph involvement) no-one sure whether this is a 'new' primary or a recurrence and question about whether it was even there when I last had chemo (too complicated to explain), so had chemo again - this time taxotere and carboplatin. I had 5. Couldn't do 6.
I was told there are lots of chemos out there and you are right its is really scarey when you know that is all there is. I really suffered on chemo. I did not think I could possibly do it again this year, but I did. So if I did, you can too - if it comes to that. Another lady said you could have rads more than once. I was told this was not advisable as I had already had it to the right side of chest wall.
I spoke to a lady through breast cancer care who had a triple neagtive b/c which reoccurred only a couple of months after she finished rads. She had more chemo (same regimen as me) and a number of years on, she is fine.
Like you, I worried about long term effects of extra chemo. We discussed this alot. I know what they are but don't want to scare you. I think its fair to say I was/am as afraid of the chemo effects as the cancer.
This is all really garbled and quick as have to go and get daughter, so do ask if you want to know more. You are never alone!
Rattles xx
PS with me, it wasn't about margins etc, but the risk of spread

[Cressida]

I am responding to myself now as I have not found anyone in a similar position, but I know that people "lurk". I certainly did.

I have read every research paper I can on the topic of chemo after surgery for TNBC. There are quite a few and I won't link them, but if you like to read research papers then a simple search using "adjuvant chemotherapy triple negative breast cancer" will get you a lot of them without needing medline access or needing to sign up to medical websites. I am a health professional but I am not a doctor and I do not specialise in cancer but I am used to doing this kind of research in a different area. If you do not like to read this sort of detail I would suggest not doing the search. I think whatever method of coping gets you through is fine. I like to know, but it is not for everybody.

Basically I have learned that there is no clear answer! It does seem that size, node involvement and response to neo-adjuvant chemo all matter but this would seem to belong to the stating the bl**ding obvious school of research. If you have a TNBC smaller than 1cm with no node involvment that responds well to neo-adjuvant chemo than you are in the lowest risk group for whom adjuvant chemo is probably over doing it. After that it all becomes unclear. (neo-adjuvant chemo is before surgery and adjuvant is after). There is no equation to work out sizexnodesxreponse to neo-adjuvant. I had a very large TNBC, clear nodes and a poor response to neo-adjuvant chemo but I cannot work out the significance of this.

There are a possible 6 sub types of TNBC identified so far and some research suggests they respond differenty to different types of chemo, but this is very limited research and I do not know if I can find out what group I belong to without being in a trial specifically about this. My Onc is going to hate this question when I see her next week.

The stat I do not like is that a poor response to neo-adjuvant chemo puts me at the highest risk of relapse within two years and having such a relapse drops my 3 year survival chances down to 68%. In some, ways this stat is actually not as bad as I thought it might be but it is not something to crack open the champers over.

So, my current plan is to drive my onc crazy with my well researched questions and then follow her advice. I will do it if she thinks it is worth it but I will need help.

I will check this post over the next few days if anyone has anything to say but I am going to try and enjoy my weekend and not obsess about cancer.

x

Ooops - forgot that there is also evidence that stage is part of the equation. Stage 2 seems to have a better response to adjuvant chemo than stage 1 or 3.

Now I will stop talking to myself.

[Cressida]

Hi all,

Just bumping myself as the chemo or no chemo appointment letter has arrived. I have until Tuesday 20th to be prepared.

I really appreciate those of you who have commented - any more? or any good ideas about questions? I have been in so many appointments where I have been overwhelmed. I really want to be prepared with my list of questions that must be answered before I can be hurried out the door this time.

Thanks in advance, x

[Cressida]

Hi Pamela,

My one and only sentinel node was clear. I think it is the prize winning size of the lump and it's aggressive growth that is the problem.

Thanks everyone for being so quick to reasssure me that I am not the only one. Hard to keep perspective sometimes.

Keep it coming

x

[pamelap]

Hi Cressida
I'm TNBC, 10 years post first diagnosis. I'm wondering how many if, any, nodes were +ve. That would be very likely to get them suggesting post-op chemo. In any case, with a tumour that did not shrink, it doesn't sound so surprising they might want to try a different chemo post surgery. (I don't know for sure, as each case different). It sounds like your main worry at present is how awful chemo is so you really need to have a good chat with your oncologist and find out enough about it all so you can make an informed decision. Take a list of questions. They are quite used to it. Good luck.

[Cressida]

Hi CK,

Do you mean you are just about to start 15 rads or chemo? 15 Chemos sounds a bit scary.

[Guest user]

Hi like yourself I had chemo first to shrink my tumours. I had 3 tumours largest 3.5cm and a large area of dcsi. After surgery I was told largest tumour had shrunk to 2cm. I am also having rads as I had 6/18 nodes affected (however were clear when removed, chemo blasted them!). My onc told me that as I am tn they throw everything g at it to reduce the risk of it coming back. As she but it "its an agressive cancer so we treat it agressively". Also from what I understand is they can give rads again, just not in the same area. As someone else said on here they are very precise nowadays at ensuring they keep any lung/ heart damage to a minimum.
Im due to go in today for my first session out of 15, I have just put myself in hands of the professionals and take it that they wouldn't be doing it if they felt it wasn't necessary.

[Cressida]

Hi Jan,

Margins were clear but I need to ask if any further scans will help check on this. As for BRCA - I only recently realised this could be relevant due to being under 45 and having TN. I intend to ask for screening but I understand that it takes about 2 months to get results so I am not sure it will help me decide. There isn't a significant history on my mother's side but we don't really know about my father's side.

I think the reasons for more chemo are the large size and the aggresively growing during taxotere bit. It's hard to get to grips with the idea that it does not seem to have spread but she obviously thinks there is a significant risk it still will.

Thanks for getting back, x

[BrainyBlonde]

Hi, I'm sorry but I'm not able to help much either except to say I way very similar to you in first diagnosis i.e. 2 5cm Grade 3 Triple negative tumours and had chemo prior to mx. However, the chemo did shrink the tumours prior to the mx after which I had 4 weeks Rads. My only contribution is that any advice about the need for more treatement, one assumes, is based on a) the results of the biopsy after your mx. Did they achieve clear margins and are they confident that they removed all malignant cells? and b)You have now had radiotherapy which should in theory mop up any problems left behind but are they going to do more scans to ascertain the success of the rads in this respect?

Sorry I have given more questions than answers. Thinking of you. Please PM me if you want to. I take lots of other stuff in the absence of anything else I can do that I can share if you are interested in this stuff. Is there possibility of a genetic link as some TN BCs are linked to this as is the case with me?

Jan
x

[Cressida]

Hi Elm,

Bit worried that you are the only one getting back to me - makes me feel that my situation is very unusual. Now I don't know if my Doc is radical, up to date with all the trials and wants to try something that is just emerging to save me or if she is some kind of chemo nut who wants to kill me with over treatment.

Your comment suggests you thought post surgery chemo might be a good idea - can I ask how long ago it was and why you were asking your doc about it? I need to try and find ways of thinking about this issue so it might help me to hear how you were thinking about it.

Come on other TN people - the stats say it should be one in ten of people on this site. Please send me any thoughts. I can't sleep for thinking about this.

[Guest user]

Hi There

i had triple negative and chemo before surgery. I asked 2 oncologists about doing more chemo after surgery and both said they wouldn't .... I also posted on the American site triple negative foundation and the users there told me even in the US more chemo is not given unless you're in a trial. But that may or may not be relevant to your situation and what you / your medical team think what may be best for you.
Hope you reach a good decision !

[Cressida]

Hi,

I have Triple Neg, grade 3, 10cm, 1 sentinel node showed no involvement, diagnosed Feb 2012. I have had FEC-T, 3 of each. Unfortunatly the tumor grew during chemo. My doc was going to do more Taxotere but stopped when she saw the MRI and we went straight to Mastectomy. I had such a hard time with tax that it made mastectomy suddenly seem like a good idea. She did mention that more chemo might be needed but I got through treatment by only focusing on one thing at a time so I put that away somewhere. When I finished my rads last week I did not even have a follow up appointment. I felt cast into limbo and that is why I joined this site. However, I phoned my BC nurse trying to get my follow up - now they want to see me to discuss having more chemo. Oh Joy.

I have had a long discussion with one of the nurses on this site (very helpful - thanks Lesley) but I would also like to hear from you wonderful people. I understand that they don't have anything for TN except chemo and I know that my lump was large and didn't shrink during chemo. I am also aware that there is no proper evidence either way for extra chemo for TN so there is no way to really know what decision is the right one. I want to give myself the best chance of killing the beast but I am also worried about the effects of chemo - both short and long term. I don't know yet what chemo but I know it is not tax.

Has anyone had TN treatment like this? I have 2 weeks before the appointment so - any thoughts?