Just wanted to say hi Cheza and say that you've had some wonderful advice.. the biggest being staying off Google.. its so hard not to look but as the others have said, its out of date and everyone is different. I've done my fair share of Googling and worrying particularly over survival rates but as I was told .. to have a percentage of a 10 year survival rate now, means those were diagnosed 10 years ago, so look how much things have changed.
2nd best piece of advice I had - ask questions - write them down if need be.. and don't every feel you shouldn't call your team and ask things.. .if you don't you worry... its their job so they won't mind.
And biggest bit of advice... STAY ON THE FORUM... we are the best placed people to understand exactly how you feel... I wouldn't have got thought it without the support of this forum and the wonderful people on it.
Take care, one step at a time.
Thank you so much for your reply. Its good to hear that you managed to work from home during your treatment as this is something that I want to try and do as I find that keeping busy, even since my diagnosis has been invaluable.
I am a complete control freak so the fact that I am in a current state of the unknown is my biggest challenge at the moment. I want to get in, get the tests done and get started with the chemo as that will help me no end.
Defo also trying to stay away from Dr Google and trying not to panic about other aches and pains (woke up with an aching back this morning and straight away started to panic!!!) but I guess talking to other lovely people on here that is quite normal xx
Thank you again fro reaching out xxxxx
i just wanted reach out to you as I can fully understand how you are feeling and with everything thrown at you all at once it’s a scary place. You will be caught up a few weeks of scans appts. It does seem standard so try not to worry, I had them all too.
Back in Jan I was diagnosed with tnbc and also had genetic testing. I had the 6 rounds of chemo and managed to work at home some of the time, it did and still does help keep the mind from wandering, the chemo is very doable, your friends and family will get you through it and you will learn to understand which days are your good or bad days on each cycle. However you will feel settled when you start, it’s odd but the panic and worry does ease when you start treatment. The oncologist will run through all the possible side effects of chemo and it’s does scare you but keep it in your mind that they have to list every possibility even if it’s one in a million.
My gene test came back with an alteration so I did make that informed decision about surgery and found it all ok, just taking a day at a time.
I am now three days off finishing radiotherapy and feeling great. It is a bit of a whirlwind but you are looked after so well and your support network will be invaluable to you. As everyone says please stay off google as much as you can. I did go there a few times and seriously it’s full of nonsense. Remember there are no stats for survival rates today as that’s us!
Good luck for Monday xx
thank you so much for your message.
I am definitely trying to stay as positive and strong as I can but acknowledge that Dr Google did not help that last night and through the early hours of the morning where I had worked myself up into a state looking at survival rates for triple negative 🙈
going to take this journey one day at a time and my work have already said they will support me with home working if I feel up to it and if not that’s ok too so I am very lucky to have such a great support network around me!
First challenge getting through the additional tests and scans and meeting my oncologist on Monday to talk about next steps xxxx
Thank you so much for taking the time to reply it means so much.
i am trying to keep to normality as much as I can until I have to make adjustments as I do not want cancer to define me. I will stay away from Dr google as those blood stats sent me into a meltdown last night 🙈.
I’m sad to hear you too have found yourself in that awful place where you don’t yet know exactly what’s wrong and what’s going to happen. You are going to need a lot of patience but you are now in safe hands. I was reading a bit of my blog tonight about my fear around what my MRI might reveal (I had it at the end of all the treatments and it revealed that everything was fine). The tests you are having aren’t because they suspect anything but routine, to eliminate possibilities. If you’ve been told they don’t think it’s spread to your lymph nodes, they are probably pretty sure of their initial diagnosis and all Dr Google will do is feed your fear so avoid him like the plague. He doesn’t know your specific diagnosis and he cannot care about your feelings (you can get excellent, informative leaflets from here and from Macmillan). However, even if it had spread to your lymph nodes, as mine had, it’s not as bad as it sounds. Very little is. I am still trying to fathom why our society encourages such fear around cancer - the survival rates for breast cancer today are very high.
There’s undeniably a long haul ahead for you BUT every one of us responds differently so don’t get panicked by what you read and hear. Wait and see what happens to you. You’ll deal with it. We all do, despite all our misgivings. There’s no measurement of success except being cancer-free, no rights and wrongs, no good or bad... I was flattened by some of my chemo while my friend carried on working part-time. I don’t consider myself a failure. It was just bad luck. Then I had radiotherapy and it was a doddle. I’m not a great fan of the fighting the battle analogy. There’s a tremendous amount of negative language around cancer and it fuels fear. I found going with the flow took me through it all; no Google, no leaflets, no questions; just ok, get on with it - that’s not to say I wasn’t terrified at times but I got through it and have emerged with a new outlook on life.
I wish you well in what lies ahead. It’s unpredictable so one step at a time is my advice - that and create a network of good friends and family who will take their lead from you. Take care,
Oh yes the scans etc are routine, but again it’s easy to think 😳😳😳😳😳what 😳😳😳, speak to the bc nurse you’ve been assigned, or use the ask the nurse facility on here and the someone like me option too. Hope this helps 💕💕✨✨Shi xx
Hi cheza, sorry you find yourself on here. Having BRAC test will help make informed surgery decision when you have to. Being tn does not automatically make you have BRAC gene, I didn’t have it, but I had the test so I could take preventative action if I did. Please join the chemo threads when you start chemo, if you read August 2019 chemo starters, sept chemo starters etc, there are lots of tips on them to help you for when you start. Please keep off dr google it will send you into orbit. A good book I had was surviving triple negative breast cancer by Patricia prijatel. There are lots of tnbc survivors, Patricia prijatel, Shannon Doherty, robin Roberts, me. Your teams have seen it all before and you will be in safe hands. Keep 👍👍💪💪💪hope this helps 💕💕✨✨Shi xx
So yesterday I was given the news that I have Grade 3 Triple negative cancer and also DCIS in my left breast. I found my lump 3 weeks ago and got in to see my GP really quick as there is a history of breast cancer in my family. I check myself quite often so the lump they have found is 14mm by 9mm and at the moment from what they have seen in the mammogram and ultrasound they don’t think it has gone to my lymph nodes.
I have been told I will need Chemo first and then surgery plus radiotherapy but they have also recommended being tested for the BRAC gene so I am able to make an informed choice when it comes to the surgery. I have also been told today that I also need to have a CT, MRI and Bone scan so I am now freaking out and panicking this is because they think it is elsewhere in my body and are not telling me!
i had a full hysterectomy 18 months ago as I had severe endometriosis, adenomyosis and fibroids and have recently being having some aching and twinges in my abdomen which I am now panicking about and fearing the worst.
I am determined to fight this with all my might but have consulted Google on my condition (stupid I know) I am now feeling less positive about the prospects of recovery etc so would love to hear from anyone who has experience of fighting this and what to realistically expect.
Sorry for the essay xxxx