Feeling hopeless

[19star19]

Hi,

I’m 37, have recently been diagnosed with TNBC and really struggling to find some positivity.

I have some small node involvement so had to go through MRI / CT / bone scan which was an excruciating 2 weeks! Thankfully found out this week all were clear. The surgeon and BCN i’ve been meeting with throughout are great! The overwhelming relief of finding it hadn’t spread combined with their optimism left me feeling somewhat positive earlier this week.

However, I then met with my oncologist for the first time 2 days later and got pulled back down to earth with a bang. He was a lot less reassuring than my surgeon and BCN. He seemed to reinforce my fears around some of the online stigma associated with TNBC where the surgeon and BCN had otherwise reassured me.

I have 6 months chemo & immuno, surgery, rads and then more immuno.
He told me I can’t try the cold cap due to weekly chemo and there’s no time to freeze my eggs, so it all felt bad news.

I know the next 6 months especially will be tough, but I’m now struggling to feel positive. I’m so worried at the end of all of this it will just come back, which is making me feel hopeless and as though i’m just delaying things. I can’t imagine feeling ‘free’ at the end of treatment if that makes sense and not sure how I will ever move forward.

I have a beautiful 11month old daughter and am so worried I won’t see her grow up and be part of her life.
We were trying for a second baby when this happened. By the time i’d be able to think about trying again (assuming ovary suppression works), i’ll be around 40, so it feels that dream is gone.
I long so much to have my old life back and feel ‘normal’ it physically hurts. I just feel so angry and bitter this has happened.

I know the next 6months to year will be tough and the drive to get cancer free and my life back should be motivating me. But I feel the risk of recurrence will make me never have those things and therefore I’m struggling to find the hope and motivation.

I’m not really sure if there’s a question in any of this, but I suppose I am just looking for a safe space to offload. Sorry it’s such a gloomy post!

[Tigress]

I am so sorry @19star19 that this thing has been visited on you and your young family. It seems so unfair. There will be women along to give you hope from their own experience of getting out the other side of TNBC but in the meantime you may also want to post in this category Younger women - Breast Cancer Now forum too. There is also a helpful initiative called Someone Like Me | Breast Cancer Now which would put you in contact with a younger woman who has faced the challenges that you are facing now. It has proved to be extremely helpful in many cases.

Keep posting, there doesn’t need to be a question, just download when you need to. If it would help to talk through how you’re feeling, call the nurses here on 0808 800 6000 from 9am tomorrow. They are lovely women who don’t rush you and, once again, there doesn’t need to be a question. I would also speak to your own BC nurse who gave you some positivity and tell her how the meeting with the oncologist made you feel. They need to know this stuff. I found the two oncologists that I had appointments with to be less than supportive and rather blunt and dismissive myself, I think it may come with the territory of having to give people bad news. Anyway, I am sending you big old virtual hugs and hope that further interactions with your team bring back the positivity.

[sooz1]

Hi @19star19 ,

I’m so sorry you’re going through this. I don’t have TNBC but your story is very similar to mine - I’m 36, have a young daughter and also didn’t have time to freeze my eggs before starting treatment. The feelings that you are having are totally normal for your circumstance even though it’s awful to be feeling this way. The waiting and unknown is the hardest part. I can’t promise that these feelings will go away but it does get a little easier to manage and you will have some normality in between treatments.

I’ve found speaking to the cancer psychologist helpful so it may be helpful for you to be referred? This forum is also full of friendly people going through it all if you need to offload!

Just take it a day at a time, do things that make you happy, focus on beating this for your little one! Sending you hugs 🫶🏻

[Yasmeink]

Hi @19star19
Sorry you have to be here, but we are all here for you

There are a few of us on here who were diagnosed when pregnant or just after, I myself was diagnosed with TNBC 6 weeks postpartum with my second.

I relied a lot on the charity Mummy’s Star when I was diagnosed, I believe they support parents diagnosed with cancer up to 1 year postpartum, so you would be within that.

Do you have a MacMillan nurse? I found them to be a huge help too, they gave me soft toys and flash cards for my kids. There’s also the Osborne Trust, and the Willow Trust, both helping families. It might not be something you can look into straight away, but if you’re able to note them down and get in touch with them when you can. There are so many wonderful charities offering support, so please don’t feel like you need to go through this alone.

I too wasn’t able to cold cap because of weekly chemo and wasn’t offered fertility options, but as I had just given birth I wasn’t pushing for this. I know that they have put pressure on you to start chemo straight away, but there fertility options available - hopefully someone else will be able to help with this? And ask your BCN for guidance on this. The Breast Cancer Now nurses are also available for any questions.

The other thing I would say is, you can change your oncologist and ask for a second opinion if you feel uncomfortable. I changed hospital completely and went elsewhere, I had zero confidence in my original team. Again, it might not be something you feel up to doing, my partner made a lot of my phone calls for me during that time, do you have someone who can help?

RE risk of recurrence, I’m not a huge help as I worry about this a lot, but there are courses you can do to help manage anxiety around recurrence, I find talking to people on here and in person events really helps. I attend Shine meet ups now and then, which is for young adults with cancer (20-40 years old, another great charity!) and I’ve met some lovely women through them.

Sorry I know that this is a lot of info at this time! You have this thread to look back whenever you need to, and please do reach out if you need us

[Coddfish]

Is the immunotherapy Pembrolizumab? I had TNBC which had spread to my liver. Pembro plus chemo has given me a so far sustained remission. With drugs like this, TNBC isn’t the miserable situation people might have had in the past.

[Shi]

sorry you find yourself here over here he years there have been lots of us diagnosed tnbc, everyone responds differently to treatment but hang onto the fact treatments are changing all the time and research is taking place in the background for now take it a treatment at a time, step by step you will get through you are still fabulous you think of it as going into a chrysalis for a bit and when your through treatment you will come out a fresh butterfly and unfurl your wings do it your way, there are no right or wrongs treatments can change during the course, everything is tailored specifically to you remember your team have seen it all before a good book that helped me when I was diagnosed tnbc in 2017 is surviving triple negative breast cancer by Patricia prijatel. Breast cancer now and all of us are here as much or as little as you need don’t let it take your joy, it will try and you have to dig deep but try giving yourself a treat after each treatment anything things you enjoy, things you want to do keep looking forward, it’s hard to when your first dealing with diagnosis and treatment everything happens at lightning pace, but you will settle into a routine sending big Shi xx

[Shi]

Mountain lion by strawberry blonde on here in hope and inspiration has helped a lot of us too Shi xx

[19star19]

Thank you so much everyone for taking the time to send such supportive replies. I really do appreciate it. Family and friends try to be supportive but I guess it’s hard to really understand the emotions.

I’m going to speak to my BCN tomorrow to try and get some positive reassurance again…remind myself I’m hopefully not the lost cause my oncologist made me feel!

[19star19]

It is that immunotherapy yes - I’m really grateful to be able to try it. That’s fantastic news about how well it has worked for you!

[naughty_boob]

Mountain Lion

“What’s it like to go through cancer treatment? It’s something like this: One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE. Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST! So you take off running, and the mountain lion is right behind you. You know the only thing that ca…

This is what @Shi mentioned

Take care

[Shi]

Thanks naughty boob hopefully you can find it and hopefully it helps like it has so many of us over the years Shi xx

[filibuster64]

I was diagnosed with TNBC in January, multiple tumours and biopsy confirmed node involvement. I’m on the same treatment pathway as you. It’s a lot to take in and google definitely isn’t helpful! Everyone else has said it so well that I won’t repeat, but fertility treatment was discussed with me (I have no details as I’ve completed my family), and I’ve cold capped weekly (13 times so far) and successfully, so perhaps clarify that with the nurses if it’s something you’re interested in. It does get easier in some ways once you get started with treatment and into a routine with things, but some days it’s hard not to dwell too much on the negatives. Be kind to yourself and take it one step at a time xx

[Nat1984]

I would push for the cold cap. I wore mine 16 times and kept 60% of my hair, was really pleased, didn’t need a wig/head cover. I had 4XEC every two weeks, followed by 12xPaclitaxel WEEKLY and 4xCarboplating every 3 weeks, so an intense regimen. It added a lot to my treatment times, but I didn’t find it too uncomfortable, and it helped me a lot mentally (my kids were 3 and 1 at the time, and apart from “mummy needs to go to the hospital sometimes” and “mummy is a bit tired”, life went on as usual for them). I know a few other people in the same situation. Hair looked really thin, but no obvious bald spots. I would try a few times and see how you get on. Push for it. I know a lot of people who were discouraged, but you don’t know until you try. Good luck <3

[mrs_p1]

Oh sweetheart , I’m so sorry that you find yourself in this place . Your post really resonated with me because I too felt completely hopeless when I had my TNBC diagnosis .

I wanted to share some messages that I learned along the way .

Many of the statistics you are reading on the internet are outdated and don’t take into account the newer drugs like immunotherapy . The reoccurrence rates are improving but the internet hasn’t caught up yet .

I spent a lot of time looking at online content about Tnbc on instagram etc … big mistake . These reels are designed to get hits … they don’t show you all the normal days that you will have during your treatment … feeling ok… enjoying your family etc . Try to avoid them

Cold capping … ask again if it’s important to you … it should be possible . I know ladies who were having weekly treatment at the same time as me and they did cold cap with success. If you can’t do it … don’t despair there are amazing wigs , false eyelashes and brows out there . I used all of the above and felt fantastic about the way I looked

My oncologist was also very very negative …I had asked if chemo was really necessary and I think he was trying to labour the point and make me feel happier about the treatment . It just made me feel hopeless

You can always ask for a new oncologist if he/ she is making you feel uncomfortable

You are stronger than you think … you have got this!!! The treatment will go faster than you think . You are in great hands and they will get you sorted .

I now that you won’t feel it right now … but better days are coming . Things will get easier. Sending so much love xxx

[naughty_boob]

For coldcapping info
Paxman’s own website

Welcome to the home of scalp cooling

Cancer Hair Care UK's leading hair loss support charity

Some great workshops online and in person

A leading cancer support charity - Look Good Feel Better

[jessica1]

My friend had the same as you and sounds similar treatment she has one child too but older, shes doing ok 9 months since treatment ended , hard but have faith, stay positive, im near 10 months post surgery, i always say no reason why i got it but no reason why i cant get over it, i wisg u all the best xx

[usuallyhappyme]

My daughter last year (at 32 years old) had tnbc diagnosed at the time with a young 12mth old baby. She went through, chemo & immunotherapy, EC chemo and a bilateral mastectomy (BRCA1 gene). Once all her results came back after her awful year she is now cancer free. A complete pathalogical response. She is having further immunotherapy but this has been straightforward enough. Stay strong. You’ll get through it

[gerry22]

19star19
There is a fabulous TNBC facebook group forum that is very active and supportive for anyone diagnosed with TNBC. I would strongly recommend requesting to join. I was diagnosed Oct ‘23 and underwent the 12 weekly chemo with 3 weekly chemo + Pembrolizumab followed by 12 weeks of 3 weekly chemo + Pembro. After this I had a mastectomy and radiotherapy. I am now a year out from from surgery/treatment and really do feel I’ve got my life back. The treatment regime for TNBC is quite harsh but because of this the treatment results can be very good. I learned to take one week at a time and didn’t suffer too many bad side effects. It may seem insurmountable at the moment but you’ll be surprised how the weeks quickly fly by! Please check out the Facebook group xx

[adwillo24]

Hi 19star19, I’m so sorry you’re going through this, it really sucks!

If it’s any consolation I’m just finishing my treatment for TNBC, which sounds the same as what’s been planned for you (6 mnths chemo with immuno, surgery, radiotherapy followed by more immuno).

I just want to reassure you that although it is a bit of a marathon getting through everything, the treatment isn’t actually as bad as you think it is. Lots of the side effects can be managed really well medically. I found that hearing all the worst case scenarios and things that could go wrong was really tough, and I’m guessing maybe that’s partly where you are now? But the reality is that for the majority of people in treatment, those horrible things don’t happen, they’re just things you need to be aware of. I had complete response to the chemo, which I know I’m not the only person on this treatment plan to have the same result.

I’m a little bit older than you (44) and my kids are older, so I didn’t have to worry about fertility. That must be really hurtful for you right now and I’m so so sorry, I can only imagine how you must feel getting used to the idea of how your future may now look. But trust you will have a future and you will be around for your little one.

With respect to the cold cap I can’t see any reason why you wouldn’t be allowed this, and if it’s what you want, definitely push for it. I tried it and didn’t like it and lost my hair in the end, but silver linings and all that, it was very quick getting ready in the morning

The most important thing I found personally is just to take a day at a time. Don’t look too far ahead as it’s quite a long road which can appear daunting at the beginning. Focus on each day as it comes and you will see, even if you feel a bit rough, that there still good things happening.

Sending you lots of love and positivity xx

[neet88]

Hi, I’m so sorry you are going through this. I felt compelled to reply as I was in exactly the same position 8 months ago. I was diagnosed just before my 36th birthday with TNBC, my son was 23 months old and we were trying for a second baby. Cancer was definitely not in our plans!

The first few weeks after diagnosis are probably the worst of your life. As everyone has already said, you have to take it an appointment at a time and not think too far ahead. This was the best advice my BCN gave me. Its the only way to get through it. Once you start treatment it is a strangely comforting routine though. I had the same treatment plan and did scalp cooling throughout, so would check on this.

Everyone’s experience and response to treatment is different, and I actively avoided stories of other people going through the same thing. But in case it helps to give you hope, last week I received my pathology report post-surgery and was told I had a complete response and am now cancer free. Totally surreal and will take a long time to process, but the long journey back to some kind of new normal has started (interspersed with immunotherapy for another year!)

You are stronger than you know, and you will get through it for your little girl. Be kind to yourself and cherish those good days (which you will have!) sending love and strength xx