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Triple Negative Diagnosis

11 REPLIES 11
Member

Re: Triple Negative Diagnosis

Hi Ann

Thanks very much for your calm and calming response .... 

I am 'reguating' my Googling, not going on every day, looking for certain information only and then having a 'cut off' time... 4.00pm. Plus making sure I do a lot of 'cancer free' things, when we don't talk about cancer .... ! 

Feel a lot better at the moment,

But I appreciated your message, 

Thank you !

Chloe 

Community Champion

Re: Triple Negative Diagnosis

Hi Chloe,

As Shi says...

Getting a diagnosis is a shock & so scary, so it’s quite usual to feel as you do at the mo, but this stage does move on & settle down. 

As Shi says, do step away from google. As well as the risk of disinformation, a lot of what you find is not up to date or relevant to you personally. There is a time & place for it when you have a bit more distance & can sift through it more objectively. I remember feeling too scared to google in the early days & I’m glad I didn’t. I just relied on what the team told me. 

Although it doesn’t feel like it, the important thing is, now you’ve been diagnosed, it can now be treated. 

Sending hugs

ann x

Shi Community Champion
Community Champion

Re: Triple Negative Diagnosis

Hi Chloe, I’m sorry you find yourself on this journey 😘😘you feel like you’ve just been chucked out of a plane with no parachute to start with flapping your arms frantically trying to stop yourself from hitting the ground, you have found the bccf which will help you step by step of the journey, also your Macmillan will give you amazing support, pop in for a coffee, they will give you strength, also your teams are experts and will take the very best care if you. Everyone has their own journey but without the amazing people on these threads it would not have been a journey filled with much ❤️❤️❤️And 🤣😂🤣😂and 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Through the 😳😳💩💩🤪🤪🤪I hope you use the threads and please step away from google unless you are looking at positives I’ve mentioned already 💪💪💪 do speak to your teams about your anxiety as they really can help, don’t worry about having a wobble or anything, we’ve all had a 😳moment (especially when the chemo steroids block your bum up and you end up with anosol and senokot and movicol shares because you become their best customer) 🙄 hope this helps you a bit and do phone the someone like me through bccf, im sure it will help you ❤️❤️💕💕✨✨Shi xx

Member

Re: Triple Negative Diagnosis

Hi Shi

Just read your reply to Katjack, which was soothing to me as well... I have triple negative , with positive nodes ( though Dr said not triple - as HER2 + is 'borderline' and will get Herceptin ) from what I am reading, it is very similar either way...

Anyway, been reading things on line and got myself very scared ( believing all the negative stuff and ignoring anything else probably ) just feeling on my own and in a PANIC !!!! 

Don't know where to turn for help or how I am going to remain sane .... 

what do you do when fear gets the better of you ? 

Chloe 

Highlighted
Member

Re: Triple Negative Diagnosis

Hi katjack
I’m 37 and was diagnosed August last year
TN grade three no lymph node involvement I had a lumpectomy as didn’t k ow at the time I was tn
I’m half way through chemo the Internet scared the life out of me so now I stay away
Plus as mentioned it’s old stats
Xx
Community Champion

Re: Triple Negative Diagnosis

Hi Katjack, just wanted to say hi and welcome you to the forum.  Its is a very scary time but it gets easier once your treatment plan is agreed and you get into it.  As Shi has said this forum is amazing with lots of support for every aspect of your treatment.   Here is my blog which you may find some comfort from:  lifeafterlola.com.  Sending hugs. xxx

Shi Community Champion
Community Champion

Re: Triple Negative Diagnosis

Hi katjack, sorry you find yourself on this journey but very glad you’ve found bccf. There is the someone like me facility with bccf which could help if you wanted to speak to someone who had tnbc diagnosis too. There are a lot of us, so you are not alone. A good book that helped me was Patricia prijatel - surviving triple negative breast cancer. Also there are lots of tn survivors out there, robin Roberts, Joan lunden, Shannon Doherty to name some high profile ones in USA. Remember there are breakthroughs with treatments all the time and your treatments will be tailored to you specifically, your teams will look after you and throw the full arsenal at you and look at chemo as an extra doctor giving it a good 🥊🥊🥊🥊🥊on the inside too. If you’ve got long hair think about donating it to little princess trust wigs for kids, you could turn loosing hair into a positive? Now we’ve got you sandwiched safely between us on the rollercoaster, use the threads as much or as little as you need, there are surgery threads, chemo threads, rads threads and you will never be alone support is 24/7 on here with lots of ❤️❤️❤️And 👭👭👭and many 🤪🤪🤪🤪moments but always ❤️❤️❤️💕💕💕✨✨✨Shi xx
Member

Re: Triple Negative Diagnosis

hi,

if its any helpI've had TNBCfor the past 28 years,and it only became stage4 mets 3 years ago

xx

Member

Re: Triple Negative Diagnosis

Thank you for your kind words the thing about stats really helps as well didn't know they were so old.  I also have a condition called Neurofibromatis type 1 where you develop lumps and birth marks which could be a factor in this but ĺittle is known but hopefully it means I will get the other boob off later on even though it's healthy due to genetics just hoping the sentinel biopsy is ok as well always looking on the bleak side 

Community Champion

Re: Triple Negative Diagnosis

Hi Katjack,
Thankfully, it looks like it’s been picked up early & it’s good the nodes are clear, so there’s every reason to be positive about this.
There are others here with TN bc who will be along shortly & others here have done well & are fine years down the line. From what I’ve read here, the longer you remain cancer free after treatment, then recurrance becomes even less likely with TN.
It also helps to remember that the stats are based on those treated 10-20 years ago, so are not necessarily representative now. For many of us, stats are just best ignored really, because they are not specific to us individually.
Although it doesn’t feel like it, thank goodness it’s been picked up & can now be dealt with.
There’s loads of support here, so do come & chat or vent whenever you need to.
ann x
Community Champion

Re: Triple Negative Diagnosis

katjack

 

Hello and welcome to the forum although it is not somewhere you would willingly want to be, however you will get lots of help and support from the wonderful ladies on here, some of which have had the same diagnosis as you and I am sure they will be able to give you support

 

Sending you hugs

 

Helena xxx

Member

Triple Negative Diagnosis

I have just been told I have TNBC and i am terrified I'm scheduled a mastectomy at end of month my choice as opposed to lumpectomy tumour is 12mm so is small and nodes were clear on scan, just need some positivity as all the stuff you read is such a poor prognosis and all you read is there no treatment apart from chemo. 

 

Not sleeping or eating Dr has just prescribed sleeping tablets.