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.
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
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.
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
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.
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
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?
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
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.
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
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
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
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
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.
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
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.
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.
