So it turns out I have Triple Negative

[nellie2099]

Hi new to this forum today.  I am in a similar place to you but 46 when diagnosed this Jan .  I thought I would be offered the genetic test as I am triple negative and younger than 50 but been told I dont qualify (could be a welsh NHS thing)  I am especially worried as I have two daughters. 

I am half way through chemo but had never thought that getting the test could help to decide on further preventative surgery /mastectomy, only that it was relevant to my daughters future. It is terribly expensive (£2,000 ish) but if it may help all of us could be worth trying to scrape up the cash.

Can you elaborate on the advice you were given if possible.

Thanks

[Lulu34]

Hi carole

sorry not replied for a while.... how did you get on? have you seen chemo doc? glad the surgeon is backing you up.

Lxxxxxx

[Kalo]

Hi Roxie,
Thank you for your reply, very helpful.
That's how I feel, what if they've missed something! I should get a phone call tomorrow from my BCN with an appointment to see chemo doctor. Will let you know.
Carole x

[Roxie65]

Hi Kalo

I was in the same predicament as you.  I only had a 7mm cancer no nodes affected but was triple negative, I am 49 but 48 when I saw the oncologist.  My surgeon had said I was to have chemo  because I was uner 50 but when I later spoke to the oncologist the decision was very firmly in my hands.  I had a 3% increase by having chemo but I also went along the lines of if its starting anywhere else I want to zap those odd cells before any problems.  My oncologist said that where there is a small margin your only offered chemo with triple negative and this is because they have nothing else drug wise to suppress it.  She said her team had discussed my case and she had even thought what would she do, but she never told me until after my decision what that was and she said she would probably want to throw everything at it too.  She is also having my cancer cells genomically tested to see if I have one of the mutated genes as she said if this proves to be the case when chemo is finished it may be rather than have radiotherapy I will be offered a complete mastectomy and my ovaries removed as it would make me high risk.  I will cross that bridge when it comes to it.  For now I am awaiting chemo 9 weeks since my operation but should be any time now.  She  did explain that due to Easter and bank holidays they were running behind and I was not an urgent case as my cancer is currently not there!!

Let us know how you get on with your chemo as we will probably be going through it at about the same time!!

[Kalo]

Hi Ladies,
So I had my appointment today, and got the percentage benefit from the Prediction which is about 6% for me. I asked the surgeon what he would recommend if his wife was in my situation and more or less agreed with me (tho he wouldn't commit himself). He said he would support my decision, so I will get an appointment for next Thursday to see chemo doctor. Chemo has to start within 3 months of surgery so I should think it will be soon.
Carole x

[Gymnut]

Hi Sue

I've had my radiotherapy now - and coped fine, couple of weepy days and a very short fuse for a while lol x now trying to put it behind me and get on with life. Some days I worry but I suppose that will never go away. Glad to hear you are getting through your treatment - as you say, it does get easier once you come to terms with the diagnosis and allow yourself to be steered by the professionals x

[Sue123]

Hi Lulu, I have been thinking of you and so pleased your treatment is making improvements for you, take care and as you said to me before, 'love and light' xx

Hi Gymnut, nice to see you on the forums again. I agree that if you have all the options re treatment then the informed decision you make is the right one. Can I ask did you have readiotherapy? I have a couple of months left of my chemo and not nice but getting there

Take care girls xx

[Kalo]

Hi Lulu,
Yes my BCN phoned me so she arranged an appointment for me on Thursday. (I'll be at hospital a while as I've an app with the endocrinology dept to see about my parathyroid)
I also had a phone call about an hour later from one of the other surgeons asking how I was and if I knew what was happening as my notes had ended up on his desk, he was very good and explained a bit more. He said I should get an app with the oncologist soon to talk things over about my treatment, so should get that arranged on Thursday.
Thanks for your reply Gymnut,
I do appreciate what you are saying but I would go for any treatment given to me. I would worry I'm not giving it enough zapping!

Wishing you all well.
Carole x

[Lulu34]

Hi Carole

sorry if i have worried you.... i just want to make sure you have had all the options available to you and were given time to decide what you actually want and not just have somebody make those choices for you. did you manage to get an appt?

and like gymnut it might be that you wouldnt feel it was worth it to have chemo.... but it may well be that you would.

Jane DCIS doesnt tend to show up on ultrasound.... it tends to show up as calcium flecks on mammo but cant always be seen hence they do sometimes even have to do extra surgery. have a great holiday.

thanks Wyn my treatment does seem to be working and my typing is much improved just seem to have a yukky tongue, tiredness and indigestion which i can cope with.

love Lulu xxx

[Gymnut]

Hello Ladies

Just to add to everyone's confusion!!  I was diagnosed with TNBC, Stage 1, Grade 3 with no nodes involved in December 2013.  I had a WLE in January where they removed a 1.3cm tumour and also discovered some DCIS.  The margins weren't clear enough of DCIS at first op so had a second 2 weeks later and surgeon was happy everything had been removed.  I was offered chemo but it was only going to increase my chances by 2.9% - and for me that just wasn't enough to put myself through the treatment.  I had lengthy discussions with my surgeon, oncologist, GP and breast care nurse and they were all very supportive - they certainly didn't 'push' chemo.  In fact my oncologist said they usually only offer it if the chances are >4%.  The one thing I have learnt from this horrible process is that EVERYONE is different.  Every treatment plan is different and there is just no 'one size fits all' even when it would appear that you have the same cancer type/situation to others.

I am a fit and healthy 53 year old no family history or other risk factors.

I had the usual 3 weeks of RT and now I am trying to put the whole thing out of my mind and get on with life.  My oncologist discharged me last week with the advice "live life to the full, don't worry about every little ache and pain but if something unusual for you personally persists for more than 2 weeks, see your GP".  I intend to try and do this. 

If it comes back, I will deal with it then.  I know of ladies who have spent months going through chemo and the cancer has still returned - there are no guarantees.  My decision has been very personal to me so this is definitely NOT advice to anyone else, but I figured that chemo = 6 months of feeling pretty bad so to put myself through it 'just in case' was not something I was not prepared to do.  I did worry a lot initially as almost every other TNBC lady I have come across had chemo and I was frightened I was being stupid refusing, but all the health care professionals I have spoken to agreed with my decision - drastic treatment for so little gain is a risk in itself.

Good luck to you all x keep strong

[Jbf57]

Thanks Carole

I hope you get an appointment this week and get a better idea about the best treatment for you.

Take care

Best wishes

Janex

[Kalo]

Hey Jane, have a lovely holiday,
Hope you can put things to the back of your mind for a wee while.
Carole x

[Jbf57]

Hi Carole

Hope you're enjoying the remainder of the Bank Holiday. The sun's shining here, so what a treat!

Like you, I really hoped I would not have to go down the chemo route, but once all my results were known I actually felt it was the way to go because of the information I was given. Hope you get an appointment this week. I'm off for a week in Greece tomorrow and hope that a change of scene and good weather will prepare me for what's coming up.  Take care, keep me posted.

Best wishes

Janex

[Kalo]

Thanks for your reply Jane,
I am phoning my BCN on Tuesday to get a clinic appointment soon, last week she offered my an appointment that week so shouldn't be a problem. I really don't want to have to go through chemo but if it gives me a better outlook obviously I will take it.
Carole x

[Jbf57]

Hi

Just to throw another fellow sufferer into the mix here, I'm a few months from turning 57, had my results on the 16th May. Turns out IDC tumour is triple negative, they also found DCIS (not so bothered about that but its a mystery as to why nothing showed on ultrasound). The IDC tumour was grade 3. I was simply told the plan for my treatment was chemo. Saw oncologist last Wednesday, and start my treatment on 11 June. Following chemo will need more surgery and then radio to follow that. Kalo, I think you need to discuss this further for your own peace of mind.

Take care, thinking of you

Janex

[Kalo]

Thanks for your reply Wyn, I too am confused now !
I think I will get another appointment at the clinic.
Yes I agree with you Lulu is very well informed.
Carole x

[wyn]

Hi Kalo and Lulu,

I was diagnosed Nov 13 with triple neg, idc grade 2 with no nodes involved, I am 51 and I was not given an option re chemo. I was told because it was triple neg then I would need chemo !!!!!.

sorry to interupt your thread but it seems confusing now.

Lulu I have been reading a lot of your posts and find your knowledge and most importantly your strength amazing, hope you are doing well with your current treatment.

Take care

Wyn x

[Kalo]

Thanks,
It was decided at the MDT meeting what my plan was to be. I will be getting radio after the six week scan.
My GP agreed with what they had planned, (you hit me worried a bit now lol ).
Carole x

[Lulu34]

That it probably why they are not suggesting chemo but It might still be a good idea to get a second opinion.... Think it can be arranged theough your GP.

I know ladies with grade 2 who had chemo even with negative nodes and in in their 60s.

This was a few years ago and i cant remember much now.... But it wouldn't do any harm to make sure that would be the best plan.....

They will be planning to give rads as they always do after a lumpectomy but normally if you were going to need chemo you would have that before rads.

Not saying they will but if you were needing it they will normally want to crack on with it.

Good luck xxx

[Kalo]

Hi Lulu,
It was grade 2, the surgeon said he got it all out and no lymphs were involved.
I got antibiotics as I've got an infection.
Thanks Carole x

[Lulu34]

Do you know if it was grade 2 or grade 3.... I know ladies in their 50s are more likely to be grade 2 but it might be worth seeking a second opinion. Even if they say the same thing then youll know your on the right plan....

Sorry i didnt get back to you yesterday. Hope the gp appt went well

Love Lulu xxxx

[Kalo]

Hi Lulu,
I am 57, gone through menopause. The cancer wasn't very big (2cms)but was harder to find as I had a cyst on top originally. They've said no chemo just now but I'm worried as I'm not getting anything just now, and I'm worried if something has been missed.
Going to see my GP later today as I think I've got an infection, feel cr@p.
thanks for your reply. Carole x

[Lulu34]

At the moment it is.... What age are you if you dont mind me asking as if you are young then they can do a gene test to find out if your a BRCA carrier (which most people arent) but they are more likely to get TNBC and at a younger age.

Sometimes they will wanna do chemo first if its a larger tumour but not any benefit if its small.

Hope your other tests come back ok.... They will normally want to give chemo as there isnt any other options treatment wise.... But def will need rads to the rest of the breast as that is done as standard after a lumpectomy. Xxxx

[Kalo]

So I now have TNBC, I have no treatment plan as yet.
After WLE and SNB, the team think they got it all out. I've to wait about 6 weeks to let things settle down
then have more tests. Is this the usual way for this type of BC?
Carole x