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Triple Negative, Scared & due for last chemo...

38 REPLIES 38
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Re: Triple Negative, Scared & due for last chemo...

Emma what you are feeling is I believe the way we all feel. There is that feeling of security during the treatment and for me there was that feeling of being abandoned after. All I can say is contact your breast care nurse whenever you feel the need no matter how small your concern. I have to tell myself that all the time, I am a nurse and I make myself follow the advice I would give to others.

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

hi somerset lady

its best to be referred as often what we think somebody has isnt exactly what they had through the cancer registry or on their death cert.... especially when you see things like stomach cancer where it could perhaps be ovarian.

the genetics team can look into these things and get confirmations of the type of cancer and age of onset.

its pretty unusual for a family not to have a few breast and ovarian cancers, but it can happen although the cancers in the family would all normally occur at a younger age.

if you dont have enough relevant cancers in the family then its normally thought not to be genetic which is a reassuring thing for your family especially your daughters.... if you were under 40 at diagnosis they would automatically get early screening.

cervical changes are not related to breast cancer but are related to smoking, but pre cancerous cervical changes have an excellent prognosis and after treatment its almost 100% cured.

in some families there can be a bit of a hotchpotch of cancers.... eg in mine i am the only breast cancer but have had it twice at 37 and 40, i originally got tested as mum also had bc at 57 and great granny in her 60s (granny had her ovaries out at 36 so we could exclude her)..... however the genetic change i have did not come from my mum but through my dads family and have since researched it.... mostly men which makes things more difficult as men do not tend to get BC and no ovarian.... however dads uncle died of pancreatic at 43 and his cousin from ovarian at 45.

relevant cancers are male and female breast ca, ovarian ca, pancreatic and prostate ca but a genetic appointment would be a good place to start and see if your family is at an increased risk and if not it would hopefully help to reassure you if your family are found not to be at a higher risk.

Lx

somerset_lady
Member

Re: Triple Negative, Scared & due for last chemo...

hi ladies,
you all seem so knowledgable i though who better to ask my concerns than you!
I too am trip neg, stage 3 2.5cm tumour, senitel node involved but all others clear. Had wle, chemo, rads, all done and dusted since May. My mum died from lung cancer, it started in her throat, then stomache, and i know of at least 3 female members on my mothers side who have had cancer, but im the only one with breast. Is it poss I might have the brac gene? I have two daughters and one had pre cancerous cells in her cervix a few years ago so im quiet worried. have asked onc to refer me, still waiting to hear anything.
Mandy

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

Jill your fears arent irrational they are very valid....

for me i was more afraid of the ovarian cancer as i know its so difficult to detect and could be quite advanced when its discovered so was keen to have my ovaries out first.... but my breasts are another matter completely.

i know that i probably should have them lobbed off but at the moment i dont have cancer so it seems so radical to remove them.... part of me thinks i would rather just wait and see if i get breast cancer again and if i did then i would have the bilateral Mx so the decision would be kinda made for me.

however my plastic surgeon says if id consider have mastectomy after cancer why not consider it before cancer.... still currently have it all bubbling about in my head and not sure what to do.... but have more intensive screening as brca 2 so get annual mri as well as mammo so that it quite reassuring in the meantime that if something was there they could find it fairly early on.

sorry im sure i have been absolutely no help what so ever but just wanted you to know that your not alone with your dilemma.

love Lulu xx

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Re: Triple Negative, Scared & due for last chemo...

Hi Emma
This all sounds so familiar but i am new to all this forum/posting stuff!
Am 42 and was diagnosed in April with 6.5cm triple negative and it had spread to 2/17 lymphnodes. Had Mastectomy , 6 chem( 3 feC 3 docetaxel) and 20 Radio sessions. I also had a genetic test as lost my sister 10 yrs ago at 44. after 10 wks have just heard i also have Brac1 and am waiting for consult on next step.
I am separated and have a 9 yr old (his dad is no help to either of us so i am alos sole financial provider.) so knew i had to be strong and beat this. All the time you have appts to keep and treatment it easy to think you are doing something.

Once it ended i felt very scared - i just want them to tell me it was all ok and of course they cant. Am considering both preventative masectomy and ovarian surgery - but its hard - i want to live as long as possible but i dont want to have general anasthetic and not wake up - its irrational but how i feel.

The lasting effect of cancer on me is an ever present feeling that something bad is going to happen - but you have to just live with it and take enjoyment from the little things. It has effected my confidence and i am fed up of crying over the smallest things, the night sweats and feeling tired - but i am still here and thats all that matters. Thank goodness I have some amazing friends and family and they keep me sane.

Everyones experince is different and i believe you know whats right for you - so be true to your inner self and you wont go wrong

Fingers crossed for us both
JillX

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Re: Triple Negative, Scared & due for last chemo...

Hiya Tina, thanks for remembering! well my results were positive.. I have the BRCA1 gene... got to arrange appts now to get things taken off 😕 I know I have to do it, its scary though!
How are you doing now? I've not been on here much, to catch up with everyone, I've been spending loads of time researching BRCA1! tell you what I'm like a fully qualified oncologist haha
Emma xxx

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Re: Triple Negative, Scared & due for last chemo...

Hi emma how did u get on with ur genetic results on tues? Hope you are ok whatever the results 🙂
tina x

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Re: Triple Negative, Scared & due for last chemo...

Hi Tina, sorry I missed your reply, I get my results on Tuesday 😕
I think it's only taken about 4 weeks (could have had them last week but my mother in law passed away)You are right though I MUST get everything taken away that I don't need. Stupid Triple Negative Grrr!
Emma xxx

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Re: Triple Negative, Scared & due for last chemo...

Hey Emma
Hope you are ok. How long did they say you would wait for results? I would imagine it would be pretty quick as they will be ooking for the specific fault that your aunt had. Fingers X'd they dont leave you sweating too long!!
I have got to say that anything you can do to stay well and to be there for your kids, then you have to go with. Before my recurence problems, I was booked in for a mx on the other side to rduce my risks (in spite of no known family history). I just felt it was something I had to do to be proactive. If I got a positive genetic result, I would not hesitate to have the boobs and ovaries removed- especially since you already have a family etc. Just my opinion of course...
Let us know how you get on and what you decide. Take care hun,
Tina x

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

Hi again Emma

that was good they managed to extract the dna from your aunts sample it very rarely works.... i hope you had appropriate counselling before your test... it can a bit of a shock to the system even if you are kinda expecting the result to be positive.

i dont think your daft wanting prophylactic surgery at all... it almost feels like that is the only option at times... particularly in relation to ovarian due to the limited screening... your aunt was also very young for ov ca as they normally recommend getting your ovaries out between 3-5 to 40 but that looks like your aunt developed it around that age.... my relative died from ovarian cancer at 45 15 years ago and im now 42 so was kinda worried before i went for my op but have had the path results and they are normal.

still to decide about the mastectomies... im on the waiting list but think i want to give my body a bit of time to recover before it gets zapped with something else.

i replied to a couple of threads in the genetics section which maybe of some use to you if you can track them down.

Lxxx

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Re: Triple Negative, Scared & due for last chemo...

Hi everyone, I've now had 7 radio's and all going well..however my aunt who died 11 years ago from ovarian cancer at 39 had her blood sample 'reactivated' and it has been found that she had BRCA1 I was tested yesterday, 4 goes to get blood from me (ouch!!)as they said its a high possibility I will be a carrier too.
Everyone's saying they are sorry and it will be awful if I am.... but I dont feel scared about the result, I've told myself I'll have a mastectomy and ovaries removed asap if I am.... I weigh it up by saying menopause & losing boobs versus cancer..... the first wins every time... Am I being stupid?
Emma xxx

dancingqueen
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Re: Triple Negative, Scared & due for last chemo...

Hi Tina,

Im in Wigan but looking for place in Manchester for university. I had my reduction surgery in Liverpool Royal in May,to reduce the size of my remaining breast which was too large for me to deal with.
Whereabouts are you in your treatment or have you finished?

mandy

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Re: Triple Negative, Scared & due for last chemo...

Hi mandy 🙂
I'm in Liverpool where abouts in theNW are you?
Tina x

dancingqueen
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Re: Triple Negative, Scared & due for last chemo...

Hi,

I am 37 and a triple negative.I finished all my treatment including chemo(4xdoc & 4x tax)mastectomy,node clearance and radio in April this year.I was ok for a few months just so happy treatment was over but then the seeds of doubt and worry started to take over.I had a pain in my ribs which i was convinced was cancer but had a bone scan last week and was completely clear. I try to keep busy and being back at uni studying is helping and organising a party to raise money for BCC has helped too. Some days thou i just feel like it is all gonna go wrong and my life will be cut short and my fertility will never come back but mostly i just try to enjoy life as much as possible now.Meeting up reguarly with others in same boat helps alot.I am a little more fearless now about some things in my life because i feel like what the hell dont put anything off anymore!!
Anybody in the north-west area?
Be good to yourself when you feel down we have been through hell,like a battle it will take time to adjust but we deserve a huge hug after what we have been through.
mandy xx

josyemarie
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Re: Triple Negative, Scared & due for last chemo...

Ive suffered with ibs since chemo and that was 6yrs ago. I often get pains under my ribs on the right hand side and a dull stomach ache that can last for months on end!! I know worrying doesnt help but who can blame us. We can't help worrying about seccondaries after a bc diagnosis. I think its part and parcel of life for most of us.

yellow
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Re: Triple Negative, Scared & due for last chemo...

Thanks to you all for your encouraging comments. I am seeing my gp tomorrow. Still have a nagging ache in left side of abdomen but everything else oK. I know it has been two years since my diagnosis but I cannot help yearning for the life I had before bc. I am sure we all think the same. Cheers

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

sorry emma i think i may have confused you in my last pots.

grade is how quickly the cells change but stage is how big the tumour is and how far it has spread.

you can have a 2.5cm grade 1 tumour but it would be a stage 2 as its over 2 cms.

as i said most TNBC tends to be grade 3 so yours is likely to be grade 3 stage 2 as you have suggested yourself.... your team will be able to confirm the grade though.

yes my op was bigger and longer recovery instead of 2 weeks of work ill prob be off about 2 months but still glad i went for the full hysterectomy... have no regrets about it whatsoever.

dawn lovely to hear your story... like you i was always fairly sensible in terms of lifestyle and diet but im not going to ban myself from things i enjoy in the hope i may get an extra couple of months... i tend to follow the everything in moderation code to life.... well most of the time.

Lxx

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Re: Triple Negative, Scared & due for last chemo...

Hi Lulu, wow that sounds a much bigger op than first expected, I hope you're ok & comfortable! Thanks for the info about grades etc, my lump was 2.5cm, so I think that will be Grade 3, stage 2 then.

Thank you so much for writing Dawn, I love hearing stories like yours, but I feel like I'm already wishing my life away to get to the 'magic 8 years' I will have such a party! I'm the same as you, I eat 'good' food, I walk a lot, very rarely go out and don't smoke so goodness knows why I got it either! I'm starting Radiotherapy next week and then... well nothing, just fingers and toes crossed!
Emma xxx

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Re: Triple Negative, Scared & due for last chemo...

Hi Emma,

I too am triple negative 1.8cm grade 3 no lymph node involvement and have just had my 5 year check with no evidence of the cancer returning take heart. I was 40 when I was first diagnosed.

I do remember that panic as treatment came to an end it is so reassuring to have the hospital constantly there but you will still have your breast cancer nurse to phone and your GP if there are any problems. I have had a few negative scares over the years and was seen just as quickly as when I developed a cyst in the other breast during chemo. The help is there if you need it.

I can assure you that eventually you go many days without thinking about breast cancer, infact now I have a monthly reminder set because otherwise I could easily forget my check. I made few changes to my lifestyle as I had been vegetarian for years and ate a low fat diet, I can't exercise due to other health problems so the only thing I did was cut down on the use of chemical cleaning products in my home. Other than that I have grasped life as much as possible, I no longer eat vegetarian and if I want to eat or do something I do.

Good luck

Dawn

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

Hi Emma

i ended up having a full open hysterectomy instead of a laproscopic BSO... as my scan showed some endometrial thickening which is a side effect of the tamoxifen... one good thing about being TN you dont need hormones.

the majority of TNBCs are grade 3... just means the cells change more quickly than with a grade 1 or 2.

if it wasnt in your nodes (mine wasnt either) and it was under 2cm (mine was 1.9cm) then its a stage 1 cnacer which has a very good prognosis.... even in a TNBC tumour that is over 5cm with no affected nodes you still have a much higher chance of surviving 10 years than not.

yellow do they have national bowel screening programme where you are? you can ask your gp if you get a smaple sent off for testing if you are too young... think it normally starts at 60... but your GP should be able to give you info... and hopefully be able to reassure you.

Lxx

horace
Member

Re: Triple Negative, Scared & due for last chemo...

Your liver is high on the right side of your abdomen just under the rib cage and partly protected by it.!What you describe sounds more like IBS or diverticulitis possibly caused by chemo.Most cancers are 'silent' or pain free for a very long time.The most significant sign of bowel cancer is blood when you go to the loo though diverticulitis can cause that too.These are stressful times for you-just ask for help from your doctors and try not to panic.
Love Valxx

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Re: Triple Negative, Scared & due for last chemo...

sorry about all the typing errors earlier- I was posting on my iphone! I also had pain in my left side during chemo- convinced myself I had liver mets but doc said unlikely as liver mets tend to have no symptoms until advanced. She said I would be yellow (jaundiced), off my food and losing weight by the time I noticed liver pain. Im sureyour symptoms are harmless especially with such a good prognosis early on. lets know how you get on.
Good luck
Tina x

yellow
Member

Re: Triple Negative, Scared & due for last chemo...

Hi gingerbud

Thankyou so much for your response. Sooo scared so very scared that I may have another unrelated cancer developing in my body. I will return to the GP on Friday, he did seem to be concerned when he examined me which made me feel even more anxious. Thanks again Tina for your response it was most appreciated.

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Re: Triple Negative, Scared & due for last chemo...

Hi yellow
sorry tohear abut yur concerns. If you are really worried maybe ask for an ultrasound of your over as that is also left side of your abdomen. Liver mets tend to have few r no symptoms though but it mght be worth ruling out? I'm sure it's possible to develop a new primary unrelated to your bc diagnosis but chances are your symptoms are unrelatd. Maybe it's IBS? I have suffered for years + bowels have been all over tge place!
Best of luck really hope your fears are unfounded
tina x

yellow
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Re: Triple Negative, Scared & due for last chemo...

Hi

I would be so greatful for any comments on my current situation. I am 57 and into my second year of diagnosis for tnbc. For the past couple of weeks I have developed pain in left side of abdomen with bowel habits ranging from normal to constipation. Have been to gp who examined me and prescribed medication but said he would like to see me in one week. My immediate concern was that my bc had spread to my bowel, but gp said that this would be an unlikey site for bc mets. While trying hard to put fear of return of bc to back of my mind, a dreadful thought has come into my head. My symptoms are so likened to bowel cancer. Could I be so unlucky to have developed another cancer in my body? I am absolutely stressing out.
PS I had small tumour no nodes etc., surgery and radio, chemo considered over treatment by the oncologist.

horace
Member

Re: Triple Negative, Scared & due for last chemo...

Dear Emma yes I have been cancer free for 4 years now-had a couple of scares but one was a cyst and one was normal tissue which felt different because I have been trying to lose weight[using Weight Watchers].I had my 4 year mammo and check up a couple of weeks ago and it was clear.I made no major diet changes though I have cut down on fats and sugars as part of weight loss regime.I try to exercise more but in a rather desultory way.As far as grades go the most important factor is that you had no lymph nodes involved.All grade3 means is that you had more clearly defined cancer cells and it is faster growing but once its out its out.The chemo should have mopped up any strays in your body and rads will make sure that the rest of your breast is ok.You will have regular checks and if you have symptoms you will get scans etc[I have never had any].The best thing you can do is live as happily and healthily as you can for the rest of your[hopefully long]life.Remember that, though tnbc is more likely to return in the first 2 years than +++,the risk decreases till after 8 years you are much less likely than them to have it come back.Also tnbc tends to be more responsive to chemo[especially tax].Its not pleasant I know but it needn't be all gloom and doom either.There is no magic formula for any of us.We are all here for you whenever you need help,reassurance or advice as you move on.
Lots of love and all the best,
Valxxxx

sylvias_star
Member

Re: Triple Negative, Scared & due for last chemo...

hello emma i was diagnosed with tnbc in oct 07 i know how scary it feels but im still here 4cm tumor with 2 lymphnodes involved the way i look at it is go and enjoy yourself grasp everything wioth both hands i have 3 kids and i know its hard but you will get there take care xxx

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Re: Triple Negative, Scared & due for last chemo...

Thanks Val, I've just come to the end of chemo and I'm more worried now than ever before! I'm starting radiotherapy soon.
I get confused with my grading will you be able to help? My lymph nodes were clear, and it was 2.5 cm but I'm sure my surgeon said grade 3?
Have you been trouble free for four years and did you do anything radical with your diet / exercise or anything else? I've read all sorts about soya/red meat and lots more, but unsure what kids of things to avoid! I so wish I could take something for five years to try and help stop it coming back 😞
Emma x

horace
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Re: Triple Negative, Scared & due for last chemo...

Hi Emma-there are quite a few tn ladies here.I am 4 years post dx and had a 2cm tumour grade 2 with no nodes involved.It is scary but as time passes your prognosis comes level with receptor +++ people and after 8 yrs your outlook is better-take heart-you can do it.Good Luck.
Valxxx

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Re: Triple Negative, Scared & due for last chemo...

Hi Lulu just a note to say I hope all went ok with your op xxx

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Re: Triple Negative, Scared & due for last chemo...

Thankyou Lulu for writing to me tonight, I love my life so much and dont want any of it to change, none of us do though do we!
I hope all goes ok for you on Tuesday, thanks again, Emma xx

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

obviously we cannot say it will def not spread but its not the same horror story they used to give.

you have more chance of it not spreading or getting a recurrence than you do of it spreading or coming back.... and you have more chance of still being here in 10 years time than not being here.

i try and look on the bright side and make the most of what i have cos you never know whats around the corner and i dont want to waste all my energy worrying about getting sick or dying when i could be enjoying living my life to best of my ability.

take care hunny xxxx

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Re: Triple Negative, Scared & due for last chemo...

Thats great info thankyou so much, will I still be high risk of getting it in my brain/lungs/liver/bones as thats where they said BC prefers to go next? I;m sorry for all these questions, my brain is like spaghetti at the mo!

I think I should go ahead with the two further ops then.. I'd have my arm removed if it gave me a chance!

Thanks again Lulu x

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

Emma

i was found to be a brca 2 carrier about 2 months after finishing chemo... my lumps had both been small so i had a WLE on each side, but going into hosp to get my ovaries out next tuesday and due to have bilateral mx in about 3-4 months time.

having your ovaries out reduces the risk of ovarian ca by over 90% and reduces the risk of breast cancer by 50%.

the prophylactic Mx reduces the risk of bc by over 90%.

generally speaking the risk of recurrence from BC is 3% so if you reduce that 3% risk by a further 90% it is a very small risk but can never say 100% no risk.

your BCN will be your BCN for the long term so dont be afraid to contact her.

Awadan its very reassuring to read stories like yours... thanks for sharing.

Lxxx

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Re: Triple Negative, Scared & due for last chemo...

Thankyou Awadan, wow 12 years clear, that's my dream! my daughter will be 17 by then, and my son 22! I'm struggling to see past easter, feel like im tempting fate by thinking of summer holidays for next year... I don't like to talk like this, because the ladies on here are so brave, I feel like such a wimp at the mo.

I had Reiki this morning and the lady suggested I start Tai-chi classes with my husband, a bit different than ballroom dancing but still! it will be nice to have a hobby to enjoy together!

Thanks again, Emma x

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Re: Triple Negative, Scared & due for last chemo...

Hi Emma
I too had a negative receptor tumour and I can remember feeling just the same as you at the end of my chemo in 1998. I hope it makes you feel a little better to know that it is possible to get through this and have a positive outcome. I'm just considering reconstruction after all these years - now my kids are all grown up and independent, it's time for me.
Try not to panic about the end of your treatment, it's a natural reaction to be concerned. Remember that you know your own body better than anyone. Be aware of what feels right and discuss any concerns with your GP or breastcare nurse. They will understand that you feel like this at first. It will get easier and as time goes on, although you will remain aware, you will begin to live your life again and will worry less.
My husband and I took up ballroom dancing shortly after my treatment finished and it has brought us a great deal of pleasure, new friends and experiences. The breastcancer experience has never left me totally but I don't let it rule my life.
Best wishes,
Awadan

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Re: Triple Negative, Scared & due for last chemo...

Hi Lulu, thankyou so much for taking the time to reply.
I'm waiting for the results of BRCA1 to come back (my aunt died age 38 of ovarian cancer) Then I think I should push for ovaries removed and breasts, whatever the outcome? a lady at my support group has had that done and seems to think she will only have a 6% chance of it returning?

They said mine was grade 3 but I cant make sense of that anywhere?
I'm so confused at the moment my head has been filled with chemo, now i'm left thinking 'what now!'

Poor you having to go through this twice, so unfair! I hope one day I wont be as scared of it!
Emma x

Lulu34
Member

Re: Triple Negative, Scared & due for last chemo...

Emma its understandable to be concerned.

but the fact there was no cancer in your nodes is a really positive part of your diagnosis.

i also had TNBC.... 3 years before that i had hormone positive cancer... so had two different primaries.

the TNBC was grade 3, but it wasnt in the nodes although i did have lymphovascular invasion.

it was diagnosed in may 2009 and had chemo last year.... now im back to work and working in breast cancer genetics... for me finding out everything i can has made me not so scared of it.

i did scare myself stupid at first because the literature would say things like TNBC is more likely to be aggressive and have poorer prognosis etc... however more and more is being researched in this area and there was a recent study which says that people with TNBC and negative nodes do not have any poorer prognosis than those with non-TNBC types of cancer with negative nodes.

obviously we cannot say with 100% certainty that we will be ok but TNBC doesnt mean you will get a recurrence or secondaries.

Lulu x

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Triple Negative, Scared & due for last chemo...

Hi everyone, I'm so sorry to post on here because I know we are all worried, but I could really do with some help!...
My info is on my profile, but my lump was 2.5cm, no lymph nodes, WLE followed by 6xEC chemo (1 to go) then radio, I'm 30...
My last chemo is this Wed and instead of being happy about it being the end, I am petrified of being left out there for the c@ncer to return (cant even type that word!).
I'm as down and upset as I was at the very beginning, I have coped really good throughout and now this has all hit me like a tonne of bricks 😞
How will they keep an eye on me? are there any of you out there with positive stories to tell? what if it comes back,then what?
I want to stay here to watch my children grow up 😞
Emma xxxx