Really new

Hi, it is reassuring to find people who have the same diagnosis as myself. I was also diagnosed with triple neg BC in Nov 2010. I had no idea what that meant so spent lots of time researching. My initial reaction was horror, that 5-10 year stat was certainly frightening. I was angry that nobody had explained the implications to me. When I rang my BC Nurse she was very helpful and I have since accepted that is my challenge, to beat TNBC. I have begun chemo but have been very ill requiring a day in casualty being rehydrated and some lovely new (very expensive) anti nausea drugs that did the trick. I am now day 13 and still having trouble eating! Thanks for listening, I am new at this whole experience and hope to contribute and learn. Happy New Year everyone...Jacqui

Hi Suemcivor  My chemo has been delayed til Thursday the 23rd.  I had an Infusa Port put in (under the skin, chest wall) last monday.   The wound needed to be restiched on Tuesday as the stitches had fallen out.  The port wound had not healed enough to start chemo, and the nurses could't find veins in my arm.  I was slightly relieved about chemo being delayed as the doctor told me about all the terrible side effects that could happen.  I think I cried all the way home, but al least I now have a week to try and get my mind round all this.  While all this was going on the oncologist told me that I had a cyst on my liver and that I needed to have an ultrasound.  Fortunately the ultrasound was negative.  Well at least that is something less to worry about..  I was told about a clinical trial for tnbc when chemo is finished.  I dont know the name of the drug but I think you take 1/2 tablet a day.  I cant be sure about this.  As I feel like I am walking around in a fog all the time and cant think straight.

Karen xx 

Hello Karen,i was diagnosed with TNBC on 23.12.2008.I started my chemo in feb 2009(6mths) & radiotherpy straight after.I was given some good advice going into my chemo & that was to count down the rounds of chemo & try not to look at how many were left.The other tip was to take a small snack with me(sandwich or vitawheats).I snacked while i was getting chemo.Everyone is different  & reacts differently so i would like to share with you my first day of chemo & i hope it gives you a giggle.My beautiful sister & my wonderful man came with me(they both came to each round of chemo with me),so the nurse is injecting me with my lovely medicine & i think it was the anti- nausa one when all of a sudden i lean over to my sister & whisper to her that i am very itchy(down below)i felt like i needed to do what dogs do & that was to sit on the ground & drag my self.Of cause my sister found this to be hilarious & said to let the nurse know.Now you see i am a very private person & was not sure how to let the nurse know that my pants felt like they were on fire.So i took a deep breath & said"excuse me but i'm very itchy down below" in which the nurse replied "oops i forgot to tell you that some people react to this medicine & we call it  ANTS IN YOUR PANTS"well we all had a good laugh and each time i had the anti-nausa they had to slowly inject it so it was not as intense.I would still riggle around which really got my sister laughing.To be honest i think this was the only reason she came along , to watch my facial expressions & my little dance.As serious as this journey is that you are on it is nice to try & find a little humour in it.I know i'm a bit late as yesterday was your first time but i do hope it was not too scary or bad for you.I wish you all the best Karen and i know that you must have a lot of people to talk to but if you need to talk or have a little laugh please dont hesitate i will be here.So now that i have written an essay i will go and leave you in peace.  Khali

Hi Karen

I was also diagnosed with TNBC in January 2009, and have undergone surgery, chemo, radiotherapy and a trial drug called Avastin. From my understanding of it, there are good and bad things about triple negative. There are no taregetted therapies (like herceptin), that is why they are trialling things like Avastin, otherwise chemo and radio are it.  TNBC apparently reacts very well to chemo, so that's good. It is a more aggressive form so by the time it is found, it is often larger than other tumours and is usually grade 3 - that sounds scary but again my understandingg is that the grade is about the pathology of the tumour ie how quickly the cells change, not necessarily a prognosis. My oncologist has told me that while most breast cancers can come back over a number of years into the future, with triple negative, they have a higher reoccurence rate within the first 3 years after diagnosis, but that if you make it to 3 years (and preferably 5 years) they rarely reoccur (they are loathe to use the term 'cured' but I have heard that too). The fact is though, that even with triple negaitve a majority of people survive it and that's what you have to focus on. I used to hate the way that doctors spoke about survival in terms of '5 years', '10 years' etc as if that is all there is, but that it just 'science-speak' and eventually you DO start to think less and less about having had cancer and getting back to your old life, except that you can take away a lot of positive lessons from the experience you had no choice about - and you will meet a whole lot of people you otherwise wouldn't have while on the journey...baby steps

Hello and thanks to all you lovely ladies who have given me some very welcome support.  I have just  been diagnosed with triple negative breast cancer.  I start chemo on the 16th December.  I am very confused about triple negative cancer and what it all means.  The little bit of research I have done, it doesn't sound very positive.  Hopefully someone out there in bcna land can shed a bit of light on the subject for me. Thanks

Karen

Hi Karen

Reading your description of your arm takes me back to my surgery which was in July and when I think how my arm is now I know you'll get a lot more movement in it and the pain will go. After my surgery (mastectomy and axillary node clearance) no-one could touch my arm it was so sensitive and I even resorted to a sling after my surgeon recommended giving it more support. Now I have just one area of numbness at the top of the arm. The tightness feel like if you do your exercises too much it might snap my physio reasssured me that it wouldn't snap but to not over do the exercises. I was completely paranoid about lymphoedema but so far no problem. I use my arm just like before the surgery and can stretch it as high as the other. Strength wise it's as strong as the other arm now. A tip is listen to the physio and do your exercises religiously, I was lucky and had a great lady who had loads of experience with breast patients and gave me great tips and advice. I am seeing her again after the chemo is over and before radiation begins.

Good luck I am sure it will improve for you too.

Sarah

Hi karen, thanks for finding your way here, it is a great bunch of people with loads of support and information, we have people on here, who like you, have just started the journey, to ones who are many years on, so you couldnt have come to a better place for support, it is great that we have family and friends from support, but nothing like being able to sprout off to others who have walked your path, and not feel like its something you should get on with, so feel free to chat, shout, laugh or cry to us, I did have problems after i had my lymph nodes removed, and am still numb under my arms, living in a rural area, even the physio in the hospital was new and admitted she didnt know anything about it, so it was a bit scary, but another woman in town happened to visit me,(she had gone through it), and showed my husband and i what to do, which really helped a lot. Anyway once again welcome to our club and please keep in touch.. Regards Moira

Hi Tanya

My upper arm underneath is quite numb, which I understand is nerve damage from surgery.  The main problem I guess is that it feels like there is a tight band round the top of my arm.  I have spoken to the Doctor about it and it is still nerve damage.  It is over 2 weeks since sugery and it certainly feels better than what it did.  I do have a physio appointment on Tuesday where Jeff and I will learn about lymphatic massage. 

Thanks for the info and quick reply

Karen