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New TNBC Diagnosis Disbelief

16 REPLIES 16
chriszg
Member

Re: New TNBC Diagnosis Disbelief

Thank you for replying.  Everyone is so kind, their stories fill me with hope. I have my pre-op assessment this morning, so hopefully I will be given an op date. I just need to get on with it now. 

thacker99
Member

Re: New TNBC Diagnosis Disbelief

Take one day at a time. Focus on one thing at a time. You’re going to be absolutely fine. I’ve just finished all my treatment at the end of August for TNBC.  Pretty much the same plan as yourself but I had the chemotherapy first as it was quite a big tumour. Ask questions  - Write them down if you feel you have to before you go in for appointments. Trust me. You have got this. x

chriszg
Member

Re: New TNBC Diagnosis Disbelief

Hi there,

I have suddenly found myself in the same position.  I’m 57.  About three weeks ago I was diagnosed with tnbc and in my lymph nodes.  I’ve just had a ct scan which is, thankfully, clear. I am now waiting for an op date. I’ve been told I will need a lumpectomy followed by chemo and then radiotherapy.  I feel like a walking ticking time bomb.  The wait is excruciating.  I’m struggling to stay positive, feeling like every day that passes this thing is misbehaving!  I just want it out!

thacker99
Member

Re: New TNBC Diagnosis Disbelief

Hi there.  I am just out the other end and finished treatment three weeks ago. I did a few hours here and there at work through my chemo. Apart from a bit of energy loss I felt okay to be able to do it. I guess it depends on what type of job you have. Happy to help and answer any questions that you have about the treatment. xx

thacker99
Member

Re: New TNBC Diagnosis Disbelief

Hi there.  Happy to answer any questions. I have just finished my treatment three weeks ago for grade 3 triple negative. Please get in touch xx

Angelface45
Member

Re: New TNBC Diagnosis Disbelief

I was also diagnosed with TNBC 6 years ago, aged 50, and felt exactly the same as you. I felt as fit as a fiddle, couldn't believe it, thought they'd misdiagnosed me!!

I had local wide excision, followed by FEC-T chemo, 3 weeks of radiotherapy and finally 3 years of Zoledronic Acid infusions. I am now absolutely fine, no lasting side effect, back to how I was before really 🙂.

Regarding working through treament, I think maybe it depends which chemo regime you having. For me personally there was no way I could have gone to work. I work on a hospital ward and during chemo you're more likely to pick up infections etc, and after the second cycle of chemo I wasn't fit for work. That was me, people are react differently.

Let me know how you are getting on, and whether you have your treatment plan. 

Take care of yourself ❤️.

 

Julie 💕

 

TeeCass
Member

Re: New TNBC Diagnosis Disbelief

Thank u so much this fills me with positivity xx

and hope

Was this ur first breast cancer ? This is my second 😬

my chemo is 9 months ! 
 The things that has spooked me the most ( and I know I am guilty for reading this online ) is that by the time the lump is found it probably has spread because it is so aggressive?? 
indont want to say out loud what my worst fear is because all my worst fears seem to be becoming true at the moment but I’m sure u can imagine x

thank u for ur time and positive vibes it has meant a lot and I can almost face a bit of breakfast

chemo start a Monday 

bumblebee63
Member

Re: New TNBC Diagnosis Disbelief

Hi, just a brief word to let you know I’m over 9 years post triple neg grade 3 with 3 node involvement. Had lumpectomy, 3 rounds of chemo, 4 weeks radiotherapy. Then that was that! No ongoing drugs, treatments or anything, I was actually sad when treatment finished and felt abandoned. At least while in treatment there is always someone to ask questions to. Never had any help or communication from a breast cancer nurse either. However, here I am, all subsequent mammograms have been fine, I just wish they could be done every year rather than 3 which seems such a long gap for something to start growing. I rarely worry about it now, only when I hear of friends or family losing their battle but none of them were From breast cancer. I do feel thankful for the last 9 years, recently had our ruby wedding anniversary which I may not have reached. I met a lovely lady during radiotherapy and we had some right giggles together at the hospital. She is also fine. So although it is devasting, there is hope and life can go on. I still work full time ( can’t afford not to haha). Love to you all x

 

 

Jaybro
Member

Re: New TNBC Diagnosis Disbelief

Hi

Yes of course you can message me. Just click on jaybro and you’ll find my profile page. On the right is an option to send a message. A TN diagnosis is scary and it’s useful to pick someone’s brains.

Chemo for me is lifelong - which is why I was still awake at 7am this morning!! I just adapt me life around it, get as much help as I can and keep on going lol xx

 

TeeCass
Member

Re: New TNBC Diagnosis Disbelief

thank you so much for taking the time to write such a long and detailed reply. 
inam shaking as I am trying to type .

are U still taking chemo ? 
injust can’t get my head around this

is there a way I can message u ? 

Jaybro
Member

Re: New TNBC Diagnosis Disbelief

Hi TeeCass

I’m TN. There are a lot of preconceptions and old tropes surrounding the condition which is why it’s essential to stay off Google, which has no filters, doesn’t scrutinise content for accuracy and never takes into account our emotions. You and I both could write something about TN and, with the right titles and a bit of manipulation, get it high up the Google list - it’s ridiculous! The important thing is to recognise how much information you want or can cope with and stick with that (example, do you really want your prognosis or will that increase your depression?? Do you really think you can clue yourself up and arm yourself with information to challenge the decisions of a whole team of specialists?).

You would have to be superhuman not to feel shocked, even devastated - there is such uncertainty in what lies ahead for you and your safe world no longer feels safe. But you are in good hands. You have a team of experts who do know what they are doing and are up to date on new drugs, new treatments, especially for TNBC, hence the delays in starting treatment. They need as much information as possible to ensure you start with the most effective drug possible but, at the same time, ensure that nothing precludes you from future treatments. There seem to be different protocols around TNBC. I know of many women who are living comfortably with it or are NED. 

My TNBC is actually Stage 4. I was diagnosed in March 2021 and the prognosis was poor (I didn;task,I unfortunately saw it online in someone’s post). 19 months on, I’m still on my first line treatment and the cancer is under control. Now what does that say about a poor prognosis! Though I completely agree with you - all that time on chemo, for what!! But please don’t identify with the old idea that death is just round the corner. That is so last century.

How do we keep positive? It depends what you mean by positive. There is no clinical evidence that shows that positivity cures cancer! Cancer has a will of its own- that’s why 9 months of chemo didn’t do the job! Changes in lifestyle, vigorous exercise (good luck with that one), dietary changes (good luck with that too) may make some people feel better physically or psychologically but it will not prolong their life! So don’t worry about not feeling great, not choosing to don a pink tutu and run a marathon, not choosing to get out of those pjs. The only risk there is that it gives you too much time to ruminate and that can spiral downwards. Find a balance and challenge anyone who suggests you should be more positive!

As regards spread, yes, TN cells are aggressive - they move fast BUT they get felled by the right treatment. So don’t worry about delay. Also, consider what you can do while you wait for your CT scan results. Anxiety will not change the results, so do something about the anxiety - mindfulness, meditation, running, baking, whatever keeps your head clear. I listen daily to Progressive Hypnosis’s meditation and healing videos on YouTube, a guaranteed stint of peacefulness. Once you have your treatment plan and have got through the early weeks of unwanted side effects, you’ll find it easier to accept that this has happened and there is nothing you can do to put the clock back. Accept that, accept the life limitations (they might not be major) and allow yourself to feel down when you feel down- just don't turn it into lifestyle choice!

I hope your scan results are good (don’t get distracted by the strange things identified - chances are they’ll never get mentioned again. Apparently I have 4 cysts on one ovary - I might never have known that and Gynaecology aren’t bothered so why should I?) and your treatment plan gets those nasty b***gers sorted. Take care - and be kind to yourself (lots of treats NOW)

Jan x

NickyC75
Member

Re: New TNBC Diagnosis Disbelief

Hi @TeeCass , I have realised I have posted in a TNBC group when I am HER2+. I suppose the feelings about BC are still the same. 

I am sincerely sorry you are back in this position. I am sending you all my love. 

I am not sure I am the person to reply to speak to about feeling positive. I have been I. Such dark places - certainly when I was first diagnosed and going through all the testing and waiting. I just look for coping and distracting strategies. I certainly find reading the internet and trying to find answers on there the worst thing to do for anxiety. Have you asked for a referral to a psychologist or counsellor? As I have said, they have given me lots of practical suggestions on how to cope. 

As I said in my previous post that using mindfulness (app), exercise and signing up for support groups all help. I bought myself a journal to write down my fears but also the facts I know to be true, which are often very different to the fears. 

Remember feelings are not facts. You do not know what the CT scans will show but thinking the worst is how your mind if preparing you in case you hear bad news. The treatments for BC are improving all the time. From what I understand, people with secondaries can live for years with a good quality life. Do not just read statistics as many are out of date. Your consultants will come up with a plan, if needed, for the best possible course of treatment. 

Be kind to yourself and give yourself a break - you have been through and are now going through a trauma. Your feelings and fears are completely understandable.

Sending you my best wishes. Xxx

TeeCass
Member

Re: New TNBC Diagnosis Disbelief

these messages have been a great help alreadyx

i was diagnosed on Friday with triple negative breast cancer 11 years after my first breast cancer diagnosis. 
Inshare the devastation and shock x

i am unfortunately having very morbid thoughts from what I have read. I am convinced it has spread but have to wait for CT scan .

9 months of chemo !! And for what ? When it doesn’t look good 🥲

how do you keep so positive? 
thanks 🙏🏼 

NickyC75
Member

Re: New TNBC Diagnosis Disbelief

I hope I have helped in some small way. You will find a great community on here of women going through exactly the same. I had never spoken on a chat room ever and I am not into social media but this has helped immeasurably. 

As I am sure you have worked out, Breast Cancer Now, Macmillan and Cancer Research has all of the info you need on the surgery and medication. 

I think when you like being in control, which I have to be for my job too, it is hard to hand that over and it can be frustrating, especially when you just want to get started with the treatment.  It took me nearly 8 weeks before they had properly identified the type of cancer I had and the treatment plan, which was hard. It had to go back to MDT meetings again and again. My diagnosis kept changing too. I like definite answers but for something like this, that is not always possible. 

Your strong, determined and resilient spirit shines through. You have got this 💪🏼 🦸‍♀️ xxx

Starr1
Member

Re: New TNBC Diagnosis Disbelief

Thank you so much NIcky,  I appreciate your response.  I'm nervous and excited about my appointment tomorrow to get a better understanding of what happens next.  It feels like time is moving in slow motion and this disease gets to do whatever it wants in my body.   I want my ammunition to fight back!!!   I don't know what to eat or avoid, what to do or stop doing.  I know everyone tells you to stay off of google.   When you're told you have a disease that could kill you and get a piece a paper for an appointment a week away,  It's pretty hard to just twiddle your thumbs through the week.  Your response was helpful.  I'm still counting down to my appointment with the Chemo team in the morning.

 

 

NickyC75
Member

Re: New TNBC Diagnosis Disbelief

Dear @Starr1 , I am so sorry you have found yourself in this situation. I understand the utter devastation and shock. There seems to be no rhyme nor reason to this terrible disease. My friend is a consultant and she said people get it who are fit, unfit, healthy, and unhealthy…. It does not discriminate.

 

Like you, I have no family history at all of breast cancer and discovered my lump by chance (mine is HER2+ and wide spread DCIS). I was 45 when diagnosed in Nov last year. I have had a mastectomy and 12 weeks of chemotherapy - I finished 6 weeks ago.  I have a 7 year old son and husband and am an Assistant Headteacher in a secondary. Words simply cannot describe my utter shock, terror, fear and panic when I was diagnosed.

I am no expert but I found my breast unit nurse to be an amazing support. She rang me regularly and I could phone to ask her any questions. I also asked to be referred for help at the hospital, so had six sessions of reflexology and mindfulness at our local cancer care unit. I see a counsellor, I pay for privately, and a clinical psychologist at the hospital. I have found once I started chemo that joining the monthly group of others starting chemo at the same time was extremely helpful and supportive. Breast Cancer Now and Macmillan have helplines.  I think it is so important to look after your mental health when going through this, as I am sure someone in your line of work can understand. 

Everyone’s journey and treatment plan is individual. I suppose you won’t know if you can work until you are going through it. My work were very supportive and I went off work from the day I was diagnosed. Mentally, I just could not cope. I get 6 months full pay and 6 months half pay. Yet, I sat with a lady at chemo, who was a bank manager, who worked right the way through. She said work were very understanding and flexible. She could work from home and if she was not well she could go and rest. I managed to play tennis quite a lot through chemo on my good days but it will depend on your treatment plan. I had weekly Paclitaxol, which, I understand, reduces the side effects. Other treatments seem to have a lot more. 

When I heard I had to have chemo I was devastated and fearful but from my experience it was manageable. 

When I was panicking about work when I was fist diagnosed, my breast nurse took my hand and said to me, ‘You are now in a fight for your life and you and your health have to be a priority.’ She did not say it to scare me but to make me put work on the back burner for a while.  


You will also find you have a lot of appointments coming up. I can’t imagine how worried you are about telling your Mum. When you have the full picture you may find it slightly easier to explain. She may be your biggest support and will just be concerned for you. 


Use all the help and support you can get and look after yourself. I hope you get a full treatment plan soon. Take one step at a time, stay off Google (easier said than done) and listen to the professionals and your body. My friend warned me that a lot of data out there on Google is outdated, as there have been so many new developments in breast cancer treatment, or based on American statistics.  

I am sending you lots of strength, support and love. Nicky xxx

 

Starr1
Member

New TNBC Diagnosis Disbelief

I am newly diagnosed last week and just met with a breast surgeon who referred me to start with Chemo.  I have an appointment scheduled Monday Aug 16th.  First , let me say that no one in my family has ever been diagnosed with breast cancer.  When they told me last week my biopsy was positive for Triple neg breast cancer,  I really felt like they made a mistake and mixed up my results with someone else.  Not that I wish this on someone else, it just seem unreal to me.   I'm a planner.  I had everything figured out as I plan to live a healthy life (mind, body and spirit).   Even as I write post, I feel like I'm talking about someone else.  I've been reading everything I find and trying to plan things out before I even meet with the chemo team.  All I know thus far is what I've read and Chemo sounds very scary.  

I'm 57 years young, Clinical Director of a Behavioral Health team and the sole caretaker of my 80 year old mother who lives with me.   I haven't told my mom because she will freak out!!  I plan to tell her after I meet with the Chemo team on Monday, so I have a better idea of how to move forward, keep working to pay the bills and take care of us both.  I've heard that many people are able to work while getting Chemo.  Can anyone attest to that???