Just diagnosed and joining the club

[wren8]

Hello everyone,

Not a club I wanted to join but here I am with newly diagnosed triple negative breast cancer at 38. I am feeling so overwhelmed with all the info and appointments and the reality that the next phase of my life is now just to focus on battling this. I feel lucky that I’ve found it (hoping early as no lymph node biopsy was done and nothing in them on the ultrasound) but everything seems to be moving so quickly. I am just sad and angry and scared to be in this position. I feel too young to be dealing with this and just want to go back to my old life. I was only at the GP 3 weeks ago so my head is spinning with the speed that they are dealing with it. I know speed is good and I am grateful for it but it is honestly so overwhelming.

Got an MRI and ECG and genetic test coming up and they will decide next week on the chemo plan going forward pre surgery. I’m quite scared that it has spread and they’ve just not detected it but I assume that the MRI will give more information on that.

Sending thoughts and love to others here in a similar situation. I wouldn’t wish this shit on anyone.

[lynnc123]

Welcome to the Forum, the one place where we all understand but don’t want to be!

Although not triple negative, I was diagnosed with bilateral breast cancer last year and totally understand the feeling that you want to return to that life - before diagnosis and scans and biopsies - even six months on, I sometimes think back to the moments before I found my lump and how life was like another world!

But you’re here now and you will get through it - I got some diazepam and sleeping tablets from my GP which helped hugely in those frightening early days. I also called the breast care nurses here who were so supportive and talked me ‘off the ledge’ when I was so overwhelmed.

It’s early days for you but you will feel more in control once your treatment plan is under way and you get to know what you’re doing!

It’s such a hard place for you to be right now but you will see that it gets better, even if it doesn’t feel like it now.
Sending lots of love xx

[Shi]

Hi wren, sorry you find yourself here, I was diagnosed tnbc at 45, had op, 6 round chemo and 20 rads from 2017-2018. Take it a day at a time a treatment at a time, ask away on here there are quite a few currently being treated for tnbc and treatments have changed since 2017-2018. Everything will be tailored to you. My genetic test was negative so no brca gene. If you do have brca gene you should be offered other preventative treatments too ask away when your ready as your treatment plan is put in place everyone will offer tips and support as much or little as you need. Do it your own way in your own time there’s no right or wrongs to getting through, join the threads if you want to or dip in and out whatever you need for you bcn has got you and do have all of us Shi xx

[wren8]

Thanks. It is lovely to hear from people who have experienced similar and there is a way through it. Good to know especially in these early dark days. It all just seems too much to deal with but one day at a time!

[kellya]

Hi Wren, Sorry to hear about your diagnoses. I have no experience to share I’m afraid towards advice as I got diagnosed just yesterday but invasive BC for me. The good thing is for you things are moving forward fast ito treatment so fingers crossed.x

[kayb26]

Hi Wren

I’m recently diagnosed TNBC as well …

I feel exactly the same!! Like the rug has been pulled from under me and I’m free falling

I’m waiting for oncology appointment and treatment plan and am hoping that once I get that I can start to process?

It’s really scary isn’t it?

[wren8]

It really is terrifying thinking of all we have to go through. Sorry to hear that you are also tnbc. I hope you have a treatment plan soon. At the moment my thoughts range from acceptance to extreme fear and everything in between. Am feeling almost calm today. Went to work but mainly just stared into space so not sure that was worth it. My next appointment is in a few days so am hoping I can get some dates to start chemo and feel like things are progressing again.

[kayb26]

Completely agree, all of it is terrifying and overwhelming.

I’ll be keeping everything crossed you get a date to start I’m sure that at each milestone we will feel better in our minds, like we are taking baby steps forward? I know there will be setbacks but hopefully with each baby step we will gain strength

I’m the same, move in between acceptance and fear almost on an hourly basis life feels so surreal at times with too much to process.

I’m glad you’re feeling calm today, enjoy every second of it.

I’m looking at wigs and fake eyelashes, wondering if I could get microbladed eyebrows squeezed in in time

I can’t face work at the moment, well done to you for showing up even if you did just stare into space, you were there!! Well done

[wren8]

No start date yet unfortunately. Probably March. They have confirmed it’ll be 6 months of chemotherapy though which is just gruelling to think about. Then a bit of a break and then surgery and then whatever else. I honestly am just in awe of all the ladies I’ve been reading about on the forums here going through it all.

Unfortunately they had an issue with booking my MRI so that was not scheduled properly so more waiting and possibly more biopsies after that before I start. I just really want to get going and get this thing on it’s way out.

Told today that I need to stop work and just focus on this and managing the nhs as I need to call them when they drop the ball and appointments aren’t going as expected. How on earth am I supposed to know how it all works. Frustrating really as I just want to progress. I guess battling cancer is a full time job.

[kayb26]

So sorry to hear you haven’t got your start date yet @Wren, it will come. Easier said than done I know, try to focus on just the MRI at the moment.

There’s just so much to process, think about and worry about I think it’s only natural for our brain to become overwhelmed especially if like me you are used to looking at ‘the bigger picture’ most of the time. I can focus on detail, but with this I’m finding it really hard as one thought tends to lead to another and before I know it - I’ve spiralled into a hole and cannot see the wood for the trees

The positive about more biopsies is that they will get your treatment just right. And that’s the most important.

I was also told that it will and DOES become a full time job. For a period of time. Like you though I’m finding it hard to adapt, manage and learn this ‘new job’ when I don’t know how it all works, fits together and with zero training or preparation.

I don’t think expectations or timelines are managed very well at all, but I appreciate that is almost impossible to achieve with the complex nature of what is being dealt with and how different everyone is. It’s really hard to remember that though when your nervous and parasympathetic system is in over drive and you are waiting

It was only Wednesday when I rang clinic to ask a question about beauty treatments pre chemo treatment they told me that they wouldn’t start any treatment for me until I was at least 6 to 8 weeks post op and that was standard. I’m 3 weeks post op this week and I was so grateful for that info because it’s allowed me to focus and plan things to make life easier and me feel better later down the line. Like having a wig fitting, my eyebrows done and donating my hair etc.

I don’t know why they didn’t mention it earlier. It was so helpful to have just that tiny but crucial bit of info. I understand they can’t give me exact dates but a rough idea / guide just meant so much to me, as I’m able to use this window of opportunity to plan and it has had such a positive affect on my MH as I feel like I have a little bit of control.

You will progress to treatment, you are in the system and they are working towards a date and getting you started, those are facts. I’m finding that there will always be something to worry / stress / get anxious about and so am working hard on controlling the controllable and letting go of the rest or at least parking it at the back of my mind for now. Again easier said than done, I know.

I’m also reaching out more and more something that I’ve not found easy but I’ve been encouraged to do it and so you do the same - if you’re not sure about something, or are worried about something contact someone, I’m finding it’s helping me calm down a bit and then I’m able too refocus.

It’s all so bloody hard though…… thinking of you and sending you a massive hug

We’ve got this

[wren8]

Thanks @kayb26. Sounds like you are moving forward in your recovery and great that you are reaching out more and feeling supported and better. Interesting about the beauty treatments. I’ll have to investigate that down the line. Just accepting I am going to lose my hair and look Ill etc for a while. A shame they had to tell you more info on the timelines. I agree any info and certainly around dates really is helpful to try and plan in some life around everything but am trying to embrace the chaos and hope things are happening properly behind the scenes.

MRI is now booked in this week so looking onwards and upwards. I have a friend who has come to stay who I haven’t seen in some time so that has really uplifted my spirits and kept me distracted from all the waiting.

Been to the GP and they were really great calming me down and gave me some anxiety meds if I need them.

Sending my best wishes to you and hope your surgery recovery is going well and we can pass this time quickly until treatments.

[kayb26]

I am beyond pleased for you your MRI has been booked. Best of luck with it.

I hope you had a nice time with your friend.

I’m doing okay, starting to process it all and moving forwards …. Still having a couple of wobbles a day though, sometimes they can be hard to get through.

I’ve been referred for genetic testing, and my appointment is a week today. I hope the tests are done quickly to inform best pathway. More waiting though which is just really hard when all you want to do is get your life back on track!!

Lots of love

[wren8]

All the tests and things are happening. No treatment start date officially but have a plan and am having a session about what to expect with my first cycle next week. MRI was expedited and showed no further biopsies needed and lymph nodes clear which was great news. Lump was found to be much bigger though when including surrounding cells compared to the original scans but they’ve assured me this is just due to the better nature of the MR imaging over US and mammogram and not growth. Hope not anyway.

Have had so many blood tests and next up the nuclear medicine kidney function test. Have to have a port fitted and then can hopefully start treatment after that. Very anxious about it all as I am not good with medical procedures but will have to deal with it I guess with this forced exposure therapy!

I have also had my genetic blood test @kayb26. They’ve said the results can take some time and in my area the other genes besides brca1 and brca2 can be slow but they will chase the results and let me know. I think I will be starting treatment before the results come through so not sure how that informs treatment down the line.

My treatment plan is weekly for 12 weeks with pembro thrown in every 3 weeks. Then after that every 3 weeks for the following 12 weeks. The weekly treatment is brutal. Crossing everything the side effects are manageable and I don’t have many delays to the treatment regime. I have been reading lots of women on here having a rough time with the pembro so am getting very nervous. Only time will tell. One week and treatment at a time as they say.

[kayb26]

Even though it’s super scary I’m glad things are starting to move for you. Each step forward is a step closer to finishing treatment

I feel like I’m in the eye of the storm at the moment whilst waiting for my oncology appointment. It seems so far away, so am going to try and return to work next week to occupy my mind and make the time go a bit quicker.

Totally hear you about people’s experiences of Pembro… but everyone is different and no one knows how any of us will handle it I suppose, same as chemo.

Did you read the BCN post of the lady with TNBC who trained & ran the London marathon soon after treatment!?! Very inspiring and positive, worth a read

I’m trying to focus on all the positive TNBC outcomes and people who’ve come through the other side. We’ve just got to get our heads down and get on as best we can, one day at a time, listening to our bodies.

Genetics testing results take so long don’t they!?! I know they’ve got a lot quicker but still feels like too long. I didn’t realise the process was so drawn out. At least I can park the potential results and what they mean for now and just focus on whatever recommendations are made to me in my treatment plan

We’ve got this @wren8 xx I hope you have a lovely weekend. Thinking of you.

[wren8]

Thanks @kayb26. Treatment starting tomorrow all going well with blood tests today. Very nervous. Still sore from port insertion but the sooner we start the sooner it’ll all be over I guess.

Did you manage to have your oncology appointment. Hope so as the waiting on everything and feeling so out of control is just unbearable. I hope work was an ok distraction for you and you are keeping busy.

Great recommendation for the marathon runner. We all need the positive stories to see the light at the end of the tunnel.

As you say we got this. So tough but all the ladies on this website are really making me feel like it can be done.