Triple Negative and FIVE years on!!!!!

[Lulu34]

Hi sarah

When you say you have a small lung met can you give me more details? I know im very nosey, but i have recently been found to have a 23mm cancerous nodule in my right lung which ONc is sure is TNBC mets but BS thinks looks like lung primary (very doubtful in 45 yr old non smoker with past History of TNBC and TNBC recurrence).

My onc thinks id be a good candidate for the triple neg trial.... Carboplatin or taxotere for 6 cycles and then swap to the opposite one when there is progress.... This might be something you could look at ill try and find a link.

lulu xxx

[sarah66]

Hi I did not quite make the 5 years! First Tnbc in 2008 and recurrance and small lung met in oct 2012.
Had wle , chemo and rads in 2008 , this time had taxol for 6 cycles and avastin , avastin stopped as it caused me to have a perforated septum! Lung met responded well to taxol but breast recurrance stopped responding after first 3 months on taxol.

Seen by breast surgeon and have decided to opt for double mastectomy at end of sept as I have large breasts and did not want to be lopsided! Also applying for ill health retirement from the nhs , I am a mental health nurse.

Have not been told prognosis and time scales , do not really want to know , will fight this thing as long as I can . Have an 11 and 17 year old and husband to stay around for.

Best wishes all


Sarah x

[Lulu34]

Hey jinxy how are you getting on?

Iv now been diagnosed with lung mets too... What procedure did you have for the biopy think im having an EBUS-TBNA... Just waiting on a date.... I have one 23mm lung lesion and three smaller mediastinal nodes.

Onc thinks like to be TNBC And suggested i join the TNTrial. What chemo are you doing and when do you start?

Love Lulu xxx

[Lulu34]

Jinxy what a blow for you.... hope the treatment goes well.... and your risght the current statistics are looking at the last 5 or 10 years not 5 or 10years into the future and things could be very very different.

hugs xx

[Jinxy12]

Hi ladies

Lovely to read so many positive sotries and well done to all you five year plus survivors !!

I had TNBC two years ago, had MX and recently had reconstruction but and i see it as a blessing whilst having surgery my surgeon spotted a tiny node that didnt look right and sent it off, came back as cancer and after CT and Bone scan it was confirmed as TN lung mets, one obviously a small tumour and three that could be scar tissue as so tiny and not the same look etc as the other one. Anyway when given the prognosis of probably five years with treatment i felt empty, shell shocked, terrified even, but i picked myself up and am fighting already. Due to start chemo shortly and a little reality is kicking back in about it all. Hope to well and truly outlive this by a long way and hopefully this forum will give me the boosts i need and support.
Again well done ladies you are amazing !
Sue x

[June22]

I hope your first chemo session went well kas1961.
Let us know how you are when you feel up to posting.
All best wishes,
June22

[mandyp]

Thanks Horace and Fengirl for your lovely posts. It means so much to me to what what i am feeling is normaL. Xx

[kaz1961]

Thanks for that horace, I am actually seeing the top ONC next week as the first one I saw scared the life out of me when she said was quiet high risk of recurrence, at least give me something positive after that!!!! Was scared out of my wits. Am due to start my chemo soon and even asked her if it was worth me having treatment at all. x

[horace]

No secret mandy just lucky but it is important for all tnbc people to know that it is not a death sentence.Remember that triple/double positive bc can recur after many many years [20+ sometimes] whereas current thinking is that if tnbc does not recur in the first 5 years post dx then recurrence is much less likely than for a similar stage positive bc.If tnbc does not recur in 8 years then there is research that says it is cured! [I used to be able to link to the study which is Canadian].
Tnbc usually responds well to chemo and it is an area where the taxols-taxotere etc have been particularly beneficial.Like with all cancers the fewer lymph nodes involved the better though I know ladies with multiple node involvement still well 4/5 years down the line.It is more aggressive than +++ bc for the first 2/3 years but get past that and there is an excellent chance of complete recovery.
Good Luck all of you x

[Jo_BCC]

Hi fenngirl

I'm glad to hear that you've started to post here as I am sure you will get lots of good, honest support from the many informed users of this site. If there's anything you need to ask don't be afraid, nothing is a silly question.

Take care,

Jo, Moderator

[fenngirl]

Hi everyone,
I remember how frightened I was when I first used to come to these forums. I used to read everything but was too scared to post. I was diagnosed at 33 with Grade 3 Stage 2 TNBC on 7 November 2007. Nearly six years later, I am NED. I had WLE, chemo and rads and came our of treatment feeling terrible both physically and mentally. I am still dealing with the mental health aspects of what happened to me (PTSD and anxiety) but I am alive and here.
I will always be looking over my shoulder and will never truly leave my fear behind, but life is good. I hope my story helps those of you who are back where I was in 2007-08.
Much love,
fenngirl x

[Lavenderlassie]

And ring your chemo nurses if you are worried about ANYTHING-my team were very hot on this.
I felt very spaced after my first chemo and looking back I am sure it was all from hyperventilation!

[June22]

kaz1961,
Wishing you all the best for your first chemo session.

You will probably feel fine during and after it, and the nurses will talk you through everything you need to know. Please try not to worry about it over the weekend.

I expect you will have some steroid tablets to boost you before the chemo, and they keep you going. A few days later you might feel a little unwell, but the hospital will give you everything you need to combat any side effects as you experience them. You will end up with a bag load of medication at home!
The chemo builds up in your body over the sessions so the last ones can feel a bit slower to bounce back from.
Each session there will be a time when you feel at your worst for several days and then you will rally back into feeling better but possibly a bit tired and achey.
Let your body dictate your activities, but don't let chemo get in the way of doing things if you can manage them... rest when you need to, sleep plenty, drink lots of fluids to flush out the toxins and keep hydrated, and monitor your temperature. Try to avoid people with colds or other bugs as your immune system will be compromised. Allow family and friends to help you when things are exhausting you.

Keep a note pad to record side-effect symptoms so that when you next see your oncologist you can mention them, as you may find you forget them by the time of your appointment otherwise. (My thinking became very wooly and I needed to write things down! They call this side effect 'chemo brain' or 'chemo fog'.)

You may yet surprise yourself with how well you cope with chemo. Just decide to 'get on' with it, and look forward to the end of the treatment. It is all manageable as you will discover. You CAN do this 🙂

Well done for getting through your busy week of appointments. Just take the rest of it one appointment at a time.

Best wishes,
June22

[kaz1961]

Thanks Lulu34 for all your postiveness. All scans done now for this week. Please Mr Postman no letters in brown envelopes anymore am sick of hospital letters. Blood check and prothesis Monday then first chemo Wednesday. Wish I knew how I was going to feel after it so can plan ahead.

[mandyp]

What's the secret Horace? Great of you to come and share with us anxious TN'ers. Xxxx

[horace]

Congrats Crystal 🙂 I will be 7 years from dx next month and so far NED has been with me.I wish the same for all of you xx

[Lulu34]

hi again Kaz

do you have a BCN? usually there is one with you at diagnosis to tell you what the doctor really means.... to them a high risk of recurrence can mean anything over 10%. i have seen some surgeons who forget that we as patienst are individuals and they can even get a bit knarky.

maybe a chat with your BCN or the lovely ladies on the BCC helpline or other support helplines or organisations.... i found maggies centre excellent.

its hard when its the wee small hours and your mind can go into over drive especially when you arent working.

good luck with all those appts and scans you have this week.

hey lavender lovely to see you... its been a while xx

Hugs Lulu xx

[Lavenderlassie]

Sing along to the tune of High Society (you are possibly too young to know it LOL)
High high, high high,
High Scanxiety!
Laughing and singing helps a little bit to shrink the natural anxiety for me, not pretending that I have found scanxiety easy.
This bit is tough, you're right, it is all packed in,
it is honestly easier once you have done this lot and have started chemo
You are doing well.
Lavender
Edited after posting in case I sounded too csual about scanxiety

[kaz1961]

Morning ladies, thanks June22 I got up yesterday and did some housework just to keep my mind busy. I think not working and leading a normal life doesnt help because you have too much time on your hand. Have nearly a week of appointments, today to get my seroma drained. Tomorrow heart check and pre chemo assessment, Thursday ct scan its never ending. Worried about my CT scan but is it best to know these things? When I had my mascetomy it does feel like yes its gone and it was a relief and now just dealing with whats left behind. Am determined to be here and enjoy being a pensioner. xx

[June22]

Kaz, I hope you managed to get up and do something nice today... despite the weather!
Even if it was a very small nice thing... pat yourself on the back for doing something 🙂

I found it easier to come to terms with having cancer by accepting it was part of me that had gone wrong. Not a part I wanted, but a part I was dealing with, and if it returns, I will deal with it again.

Once my tumour was removed I remember going to the supermarket for some groceries and thinking "ha, I'm not taking that sneaky tumour shopping any more!" Then I wondered how it was amusing itself without me to tag on to 😄

A silly idea I know, but it made me feel more in control. I fully appreciate I am still possibly carrying other mutating cells, but with every dose of chemo, and every zap of radiotherapy, I imagined cancer cells being removed.
It was just my way of visualising the cancer being destroyed. A way for me to deal with it all, as I am a visual person, and you can't see the chemo actually working! (Though you can sort of feel it working through your body.)


Anyway, everyone has their own way of feeling positive through treatments, but maybe this will help you find a way that suits you! Even silly ways like mine are fine as long as they work for you.
You are at the start of your treatments journey, and at times you may feel very tired and wonder if you can manage the next dose, but youCAN and you WILL make it to the end of treatments and then you can look back and tell cancer not to mess with you again, as you mean business, and will attack its every move.

You are back in control now, not the cancer. Go kick cancer's a**!

June22

[Lavenderlassie]

Kaz,
June is right, we probably both remember the awful feeling of "Have I gone through all this and it will come back?
I didn't have rads but at the end of chemo was just so tired and dispirited, at the beginning you are getting lots of cheer from other people and you are Ha!well even though just diagnosed with cancer so you have enough energy to be positive minded about it all.
Do you have any Cancer Support Centre near you? Usually it is charity funded but attached to a hospital, I was given a leaflet about ours on the day I was diagnosed. At the time I didn't think I hadthe time to make an appointment but eventually got round to it a year perhaps after completing chemo to learn some relaxation technique.
I had Reiki from a lovely volunteer therapist then Reflexology-none of this is my sort of thing usually at all but I found it soothing and relaxing. Then I joined a choir with an inspirational teacher and now I am doing a Cancer Survivorship Programme, also very inspiring. Every where is different but I would say go and try, it may give you the uplift you need and the feeling of other people in the same boat and people who care.
Keep going, sweetheart!
Lavender
xx

[kaz1961]

Thank you June22. You are right my spirit is so tired of dealing with this and trying to accept it. everytime I have a positive I am hit down with a negative which is soul destroying. I will get up and get myself out today I really do want to lead a normal life and just deal with this as an inconvenience. xx

[June22]

kaz1961, be kinder to yourself. This is a big issue in your life so it is no wonder it has hit you hard.
I don't know how far along you are with treatments, but I am still feeling the effects of chemo and rads, and I completed rads back in March!
Everyone heals at their own rate, and it isn't just physical healing, but the mental stuff too. We are pretty much left to our own devices to sort out our life after all the treatments, and there are other issues that make it difficult too, such as financial problems, family concerns,etc.
It isn't a simple case of pick yourself up and get on with living, so much as do what you can each day to make life more fun, and slowly things will improve with your/our/my outlook and energy, so that life finds a new 'normal'.

We cannot change what might yet happen, but we can be positive about what is NOW, and do what we can to recover after this energy sapping treatment.

I too worry about the cancer returning.
I used to worry about getting cancer in the first place, but now I have dealt with that issue and I am fortunate to still be here. The experience has changed the way I look at things.
You are doing great but your body and spirit is tired. Allow yourself plenty of rest, and plan lots of things to look forward to.
If you can get up out of bed and go for a short walk, or do something slightly energising, you will feel so much brighter to face the day, and gain control of your life again.

Take care,
June22

[kaz1961]

Thanks everyone I am trying to be positive but at the moment my head is just filled with "its coming back after treatment". I know i need to block this out and not be so negative and stop moping in bed. x

[June22]

It is so good to hear all this positive news.
I am one year on, and it seems quite a lonely time returning to 'normality' after so much support and regular hospital appointments. You can't help your mind wandering and wondering...

These messages leave me feeling far more positive about getting on with life, and I am sure they give us all a lift of spirits.

Thanks everyone, for sharing the positive part of being TN.

June

[Lavenderlassie]

Kaz,
It is scary when people talk about the increase in recurrence early on but we do get to balance it with less recurrence later on.
A lot of women with Breast Cancer are Triple Negative, 15 to 20% which is a lot of women, and we don't all die of it. My surgeon did not like to talk about it as TN and said it was good I didn't need herceptin or hormone therapy, and also that he felt there were different types within TN to be discovered. Perhaps a bit of positive spin but I was fed up with the negative spin!
After mastectomy and axillary clearance and FEC6 for Stage 1 Grade 3 I have just passed my 3 year anni with no recurrence and hope to carry on this way.
Wave, Lulu, haven't seen you for a bit
Lavender
xx

[kaz1961]

Hi ladies, I am so happy to have found you was beginning to think I was the only one affected with this. Two days ago my onc told me that this cancer was aggressive and had high chance of returning after treatment and I have been in meltdown ever since. I am expecting to be around for a couple of years and really wanted to connect with people who were similar diagnosed. You all seem to have done really well and I just hope I can do the same. xx

[Lulu34]

Good to read these stories ladies.... I was diagnosed with grade 3 tnbc in may2009 and had wle, chemo and rads, i got a recurrence in aug 2011 and had a wle, chemo and rads.... All A-OK at the mo.

i previously had hormone pos bc in april 2006 so unfortunately do still have to do the hormone tablets although havent found them too bad.

march in answer to your question if they arent planning to give you hormones they are treating you as TNBC.

the hormone level is a score out of 8 and 0 or 2 normally is classed as negative as less than 1% of the cells biopsied have hormone receptors..... In some units 3 or even 4 is treated as negative although really are oestrogen low rather than negative and pptentially could benefit from hormones but most ons will base treatment on their previous clinical experience as there isnt actually much research in ths area.... You may feel that you want to give the anti hormone treatment a try so its good to know what the actual score is as 0 is a true tnbc.... However a consultant pathologist at my unit said if you recheck every er score under 5 they will normally all turn out to be negative.

i have a friend who had tnbc but is also on tamoxifen as shes a brca gene carrier and takes as a prevention of a new primary breast cancer which gene carriers are more prone to. I have a brca2 mutation.

lulu x

[mandyp]

Great news and an inspiration.
Thank you for coming back to tell us
another fellow TN x

[chicita]

My onc told me that chemo plus rads put us TN ladies ladies who didn't have any infected nodes back on a level playing field as the hormone positive ladies with regards to prognosis. We may not have the benefit of 5-10 years of hormone tablets but neither do we have to put up with their side effects. Personally I'd much rather take my chances than suffer another load of side effects. He told me to finish rads and then go and get on with my life life and not to worry about recurrence as stress and worry are the worst things for your health
X Yvonne

[June22]

Hi March13,
I had WLE, 4 FEC followed by 3 Docetaxel and Carboplatin. Then 20 Rads. Mine was a 2cm tumour of grade 3 too, but it had not spread into the outer tissues or lymphs (though 2 sentinal nodes were removed).
I was told mine was TN right from the start, and it was a fast growing blighter!

I would suggest you ask your Oncologist or Breast Cancer nurse to explain it to you some more - they really don't mind you asking for more info - as it sounds like there was a slight positive reading from your tumour, but maybe not enough to put you through the treatments after chemo if the result is going to be so slight.
It sounds like they feel the chemo and rads will be enough to zap it away 🙂 Chemo is powerful stuff, and the Rads just finish things off!

My treatment was also a 'belt and braces' exercise, as they say.

Good luck with it all, and don't apologise for getting confused... what with all we suddenly have to learn, pills and treatments to schedule, along with chemo-brain.... it is amazing how we function at all!

[41334]

May I ask a question please.
I have had WLE and am half way through 6 FEC, radiation to follow. I was told I am 'weakly positive' and would not be having hormone treatment. Does that mean I am triple negative ?

The doctors told me the surgery was a success, I had a 2cm lump, grade 3 and found very early on routine screening, and the follow treatment was 'an insurance policy/belt and braces' exercise. I am getting a bit confused with it all.

[June22]

Thank you for letting us share in this good news.
I am TN and one year on from diagnosis... still not feeling fully healed from the effects of WLE, chemo and rads yet, but getting better day by day.
I look forward to celebrating my 5 year date 🙂

[jaxw]

Hi girls,
just to add to positive stories, I was diagnosed with stage three triple neg in February 2007! I was warned that it was a very poor prognosis, and even refused reconstruction several times, on account of this! Thankfully, a new female surgeon joined the team. I now have six years under my belt, and have reconstruction to boot!
I have to admit that I had never dreamt I would be writing this in 2013. I used to listen to news of the Olympics that were due to happen in 2012 and think that I would probably not be here to see them. I feel so thankful, I can't tell you. Keep going, ladies. I wish you all the best. I don't come on here very often now, but forum used to be a real lifeline in the early, scary days.
Bedt wishes,
jax

[Downbutnotout]

Dear CrystalT

Thanks for sharing your great news. I'll be 2 years on from diagnosis in September. The fear really kicks in once treatment finishes and there's no backup. Can't wait to get to 5 years.
From another fellow TN.
X

[Tuppence]

Thanks for sharing. It helps a lot to know there can be a future! I have just finished chemo and waiting to start rads and it is really starting to hit me now that others are beginning their hormone therapies that there is nothing to protect me in same way. So BIG thank you CrystalT for proving we can get through it.
Tup

[PrimroseHill]

We all need stories like yours to keep us strong. Thank you. Well done. Lv & Hugs. Sandy. x

[debbie_t]

Crystal,
That is fantastic news. Can't wait to get to that point. . I'm just one year on at the mo.Stay clear, good luck to you.
Deb
X

[Morwenna]

Thank you for sharing!

I can't wait to hit that five year target. Then I think I will be able to move on.

Have a long and happy life!! xxx

[carrie35]

Fab news and inspiration for all of us!

[Jo_BCC]

Thanks for sharing CrystalT. Well done and I hope you continue to keep well.

Best wishes,

Jo, Facilitator

[CrystalT]

Just had to share with you all.
I was diagnosed with grade 3 triple negatice breast cancer on Friday 13th June 2008.
I had chemo and radio, and now I am FIVE years on. It is amazing, and I just want any other triple negative ladies to know that it can be done.
I don't come onto this site very often at all now, but I do know that during my tough days, and months this site has been an amazing support.
I hope this gives encouragement to those ladies out there going through tough times.

xx