67371members
354934posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Recently diagnosed triple negative and terrified

12 REPLIES 12
Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Sharon - what amazing sisters you have 😊, really thoughtful. You have the best support team around you.

I think it’s best not to think about all the scans and tests too much, just go with it if you can. I seem to remember with one of those tests/scans they told me I would feel like I needed to pee - but they assured me I wouldn’t!! It was the weirdest feeling so watch out for it if you have that scan!!

I’ll keep everything crossed for you. 🤗🤗

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Ct and MRI next monday so fingers and toes crossed for that. Pg wont be spread too bad. Just here thinking, I got all clear with mammogram and ultrasound. Both said sist. How are we to trust follow up appointments at that rate. It's a game of chance really and dont think I want to think about it anymore. It's not good for the head. Well my sisters moved in yesterday like Kim and Aggie with rubber gloves and bin bags. They were brutal and declutter the house from top to bottom. It was amazing!!! I didnt realise how much **bleep**e 6 people could accumulate. Theve given me money and me and the kids were to go out for the day today while cleaners came in to do a deep clean, skirting, walls, tiles, EVERYTHING!!! It's nearly worth getting sick😂 I'm totally joking but it's so great to see it. It's like a new house. The positive in having lots of sisters😁

I'll let ye know how monday goes. I've to drink some stuff first apparently. Everyone prob does the same. Keep well everybody and Evie thanks for the reply 

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Hi Sharon - thank you for coming back on here to let me/us know your good news, and also for your kind words. I’m very pleased to read that 😊. Did you have mri and ct this past Monday or is it next Monday? How lovely to have got out to the beach for a picnic, I love doing that but don’t live close enough to the sea to do it often. Hugs, Evie xx

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Thanks a million Evie-S. You are so right. We brought a picnic to the beach over the weekend and it was great to just relax. I got a call today to say biopsy of lymph nodes was negative for cancer cells. Woohoo a little positive. My bloods showed 9 for tumour markers which they said is low. I've no idea what that means but I'm happy if they are happy. Ct and MRI Monday and then at least I'll have full picture and a plan. Thanks for your support and that of everyone on here. It's great to meet people who understand. 

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Evie thanks so much. I bought a few books recommended on here so that's the plan, bit of positive reading and some  time with my boys

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Try to keep yourself occupied during this waiting time, lots of nice treats and looking after yourself. And definitely take Jaybro's advice and stay away from Dr Google. There is a book I have that reminds us that "thoughts are NOT facts" - it's easier said than done, but try not to let your mind run away with you. Your team didn't see any spread to the nodes from what they could see at this stage and that's good. My team could already see node involvement on the ultrasound.

Also take one day at a time. I'm happy to answer any questions about chemo as and when you get to that stage, or if you want info sooner. But just remember that it is doable. Also do join the monthly chemo thread on here where you will be able to chat to others going through chemo at the same time.

I will also keep fingers and toes crossed for you. Any time you have a wobble and need a chat just come back on here - or private message if that feels easier too. Hugs, Evie xx

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Oh really? God that would be great. Got a date today for ct and mri. July 20th. Fingers & toes crossed and many many prayers that it hasn't spread or if it has that is not to bad places

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Good news that you got your much needed 10 hour sleep! I don't think the medical teams give false hope to stop people worrying, so do believe what they tell you.  Do come back and let us know what they say - if you want to of course. Hugs, Evie xx

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Thanks a million for your lovely reply. Yes I'm lucky I have great sisters and friends thank god. That's just great to hear about your friend. I got some kind of positive news yesterday. Am afraid to get too excited because maybe they say this to everyone but yesterday I had to go back to have a metal clip inserted into the tumour, apparently they normally do this during the biopsies but because they genuinely thought it was a sist they didnt. Well anyway the radiographer said that at the weekly meeting they had all discussed me and I has surprised them all as mammogram and ultrasound looked like sist. Everyone agreed and so she asked my permission to redo the biopsies as to her it still looked like a sist and so perhaps it's a tumour within a sist and so not a big or whatever. She also did ultrasound on lymph nodes and said to her they looked normal but because I had surprised them all she would do biopsy of them to be safe but she was not concerned. Perhaps they tell everyone that so they wont worry but I slept 10 badly need hours last night with the little bit of maybe positive news. I'll take it no matter how small. Has that every happened to anyone else?

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Hi Sharon - a big hug from me too, it's such a dreadful shock isn't it. During treatment (about 3 years ago) a wise friend told me to make sure I surrounded myself with people who "topped up my batteries" rather than drain them. It sounds as if you have some lovely friends around to support you, ones who will top up your batteries when you most need them.

I'd agree with everything Jaybro said, great advice and wise words. In case you are looking for positive stories, I would just add that a close friend of mine was diagnosed with triple negative about 14 years ago and thankfully is doing well.

I'm happy to listen any time you want to offload, or if you have any questions. My very best wishes to you, Evie xx

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Jan thank you soo much for replying. I really needed that right now. Great idea to tell the boys not to google, wouldn't have thought of that. People have been so good, I've gotten flowers and even an incredible letter from an acquaintance which was so strengthening I'm putting in in my bedside table as I fear I will need to read it over and over in the next few months. I'm so glad you are 18 months in. How are you doing? 

 

Highlighted
Member

Re: Recently diagnosed triple negative and terrified

Hi Sharon

I’m so sorry you’ve had this diagnosis. You must be reeling from the shock. This is quite normal. Unfortunately at the moment, you can’t get what you most need - a big hug from a trusted friend. The language of cancer is very frightening. Words like aggressive and invasive get bandied around and we’re stuck in the middle. Personally, I decided to leave it all to ‘them’ and, 19 months on, I can’t tell you off the top of my head what I had. What difference does it make to me, except to send my imagination into top gear?

It’s not too late to advise you to put a ban on Dr Google, as it tends to be known as here. Search engines really cannot be relied on and self-diagnosis can be disastrous. Each cancer diagnosis is unique so, even though you now know what implications there MIGHT be in having a triple negative diagnosis, you don’t know if it applies to your unique circumstances. Google generalises, is often outdated or is couched in specialist language almost guaranteed to send our blood pressure soaring. It doesn’t take into account that we’re vulnerable human beings and doesn’t care either. If you’ve been assigned a breast care nurse, she is your first port of call for any information you need. The nurses at the number above are incredibly supportive and understanding and I’d recommend that, if you can’t get hold of your bc nurse, you ring. You need to get things put into context, something Google can’t do. As my bc nurse said when I confessed I’d googled something that terrified me (the only time I did it and it proved I’d been right all along to avoid it) what’s read cannot be unread!

So from now on, make a pact with yourself to avoid searching for answers online. Ring the nurses, ring your bc nurse, ask in the forums - we all understand there’s a human being with emotions behind the questions, unlike Google. It’s great that you’ve been able to tell the boys so early but it might be an idea to suggest they avoid google as well. Instinct is to want to know more and the answers are usually at their fingertips but this is one time when it’s a bad idea.

As regards the trips out, chemotherapy can be a difficult time and you want to make the most of the days before it starts and the time you have (temporarily) to put them first because, believe me, once you start chemo, you have to put yourself first. The last few months of lockdown will be a good preparation for you. Personally, I’d ring the nurses (or your bc nurse) and get a medical opinion rather than rely on what we in the forum think. We have personal experience but we are not a medical resource. 

I can tell you that, again, each person’s experience of chemo is unique. I was laid flat by it and some days could barely get out of bed. I have a friend who carried on with her part-time job and only had the occasional day off and another who has rarely taken to her bed. You wont know till you’ve had your first treatment. You have to be on the alert for any source of infection all the time and the best indicator is your temperature, so you’ll be advised to take your temperature daily and follow the advice your hospital gives you. I’d go further and say get two thermometers, one as a back up, and check they are accurate. My new thermometer gave false readings and so I delayed contacting the hospital when I had a streaming ‘cold’ and ended up being admitted with infection. It turned out my 37C was above 40C.

You have your scans to deal with first so your team won’t yet know exactly what your treatment plan is. Once you know, you can ask us what to expect - but we’re all different. We’ll be great on practical tips though! Meantime, look for ways to get some reassurance. A phone call today to someone who KNOWS would be very helpful. Think too about methods of relaxing, whether you can go for a run, meditate or, like me, rely on YouTube videos. I plugged in to Progressive Hypnosis’s Manifest Healing repeatedly and it helped me tremendously.

Recovery rates from breast cancer are getting better by the year. Ignore the tv ads that tell us how desperate things are. You’re embarking on a very thorough and intensive investigation and treatment plan so trust your team - they’ll get you through it. It’s all manageable, honest. I wish you all the best for the future. Take very good care of yourself and go with the flow as far as you can.

Jan x

Highlighted
Member

Recently diagnosed triple negative and terrified

Hi all, I was diagnosed 2 days ago with triple negative breast cancer. I found a large lump on the upper side of my left breast and went to doc, I was in the hospital within 8 days having mammogram and biopsy. They expected it to be a sist as that's what it looked like and it wiggled so apparently that is not usually what they feel. Unfortunately for me it's not and its 3.5cm. I am having a metal clip inserted into lump today and they are checking lymph nodes. Next is mri and ct. They say I will begin chemo asap with surgery later.  Like most people I was so shocked I couldnt take in what he was saying.. I heard negative estrogen, negative something else and negative hormone. I like a thick thought this was good, like negative is good. Well jesus I got on to dr google and that was the end of it. Had myself dead and buried. I have 4 boys from 18 to 10. The hardest thing was telling them. They've been great but my teenagers are taking it bad understandably and boys are more difficult to get talking. I find the car is best because they dont have to make eye contact so they always chat better in the car. They are not used to seeing me sensitive and crying and I'm a complete mess, cant help it. Thinking, should I be going on days out with them now before I start chemo? Would appreciate advise on this as I dont really know what to expect from chemo or are u able for things while having treatment. So grateful to have found this site.