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