TNBC - recently diagnosed

Hi Jess, I was diagnosed in June. Totally unexpected and I felt I was on a whirlwind. I too did not want to look like a “cancer” patient by losing my hair. I am 11 treatments in with 4 to go. I lost my hair, it had to be shaved, due to scalp irritation during cycle 2. The NHS gives £200 towards a wig. I have 2 amazing wigs from Natural Image at John Lewis. You can’t tell they’re wigs at all. This gives me confidence. I’ve been lucky and have managed to take each treatment at a time and have kept positive. It really helps if you can do this. I have a mixture of Immunotherapy and Chemo therapy. By touch the tumour has shrunk and I’m due a scan to check soon. I see my Breast surgeon in 2 weeks. I will have to have lymph nodes removed as 4 looked to be involved at my first MRI breast scan. Again the oncologist thinks they have shrunk. After what I hope will be a breast conservation operation, I will have Radiotherapy. To end apparently it will be a year of immunotherapy as prevention. I wasn’t told that at my first meeting, but now I know. There are so many of us with positive outcomes. Please hold on to that. Your family will be great. Mine have stepped up and helped physically and mentally. 

Thanks Jo. It really helps to hear from people who have been through this. Sometimes I feel really positive, but then I google something and then it seems that tnbc is so tough and I don’t know if people are able to beat it. I’m too scared to ask my dr about the odds of beating this. I just want to start the treatment now as all of this uncertainty is getting to me. I’m glad to hear your treatment appears to be working. It gives me hope. X

Hi Jess, I was the same. Fear that I read it was the worse breast cancer to have and difficult to treat. It is treatable. I’ll have a 4% chance of it returning after all the treatment. They give us 5 years of regular annual mammograms afterwards and GPs have to respond immediately if we have any concerns going forward. Google can be your enemy. Best to stick to good online information like Macmillian and Breast cancer now. I couldn’t wait to start treatment and to be honest it’s flown by. Side effects have been kept low. A couple of days I get a bit woozy mid week after treatment. You just have to try to rest. Otherwise it’s normal routine. I work from home when I can. I had a couple of episodes of upset tummy but Imodium stops it. I’ve become a bit anaemic and have symptoms from that too. Everyone is different though but on speaking to some other ladies who I see at treatment, they confirm the same. You will get through this. 

Thank you so much, this has really lifted me today. I am willing to do what it takes to get better, I just need a realistic chance. My work is being very flexible and told me I can work when I can from home and they will take care of the rest. Best of luck with the rest of tour treatment. Let me know how it all goes. 

The thought of chemo and its side effects is scary, but you will get through it. There’s a long list of side effects, but it doesn’t mean you get them all, or that they affect you all the time. You could try cold cap, although it didn’t work for me. In the end, I think the loss of eyebrows and eyelashes probably bothered me more than the hair. 

I have been through chemo twice, my hair grew back well both times. I have been on this journey since Jan 22 with metastatic TNBC, currently in remission.

It is hard on family too. I find being open about how I feel and what I need is the best way forward. Wishing you all the best. 

Thank you for the reply. It’s good to hear from others and their experiences. I do fear getting really nauseous as I had a terrible time during my pregnancies years ago, but I guess then the problem was I couldn’t take any medications. We are trying to be honest with our children (14 and 17) without scaring them. I need to get through this for their sake. I’m happy to hear you are currently in remission. Long may it continue. 

Hi Jess I’m almost out the other side. I was diagnosed in December 23. Had chemo then a lumpectomy and starting radiotherapy in a couple of weeks. I finished chemo on 28th June and now have a good covering of hair, nearly a pixie cut. I was more upset about losing my hair (which was fine and drove me mad) than anything. I went shorter before I shaved it. I didn’t cold cap (have you considered that?). 

I bought 2 wigs, one for The Christie who I was under. The other from a company called Simply wigs which I ordered online. They were really good. I ended up getting it cut so it looked more like my own hair. But most of the time I wore hats (beanies). 

Good luck xx

Thank you for your message. I’m just sitting here looking at wigs online this morning and thinking that none of it would look natural on me! I know I should stop being so obsessed with how I look and focus on fighting this disease, but it’s so hard. I’m in two minds about cold capping and will wait for my treatment plan to see whether it would be an option. Part of me feels that I should just accept the hair loss and wear beanies and scarfs, but the thought of seeing myself in the mirror without hair is scaring me more than anything else at the moment. I hope your radiotherapy goes well, you are almost at the end. X

I am currently undergoing treatment for TNBC. 
I have done the cold cap for 13 weeks consistently and my hair has thinned. The nurses on chemo ward will be able to advise whether it could be successful or not. 
I looked at getting a wig but I only got a voucher for £80.10 which meant I had to put too quite a bit. 

I was worried about hair loss but have accepted that I will do anything to get through this for my daughter. She’s 12. 

They will list all potential side effects but everyone is different and most of the time, there is something to be prescribed to help. Like Imodium for loose stools. 

The beginning is the hardest part as there is a lot going on and a lot to take in. When you get your first chemo under your belt - you’ll be okay!

Your treatment plan will outline your journey but most seem to be doing the same and this will hopefully ease some anxieties. 

Keep the post updated with plan. Good luck xx

Thanks Missy. I think I will ask for some advice from the nurses once I know what my treatment plan is. Is the cold cap uncomfortable and/or painful? I just feel a bit exhausted tonight and just want to start the treatment now. I will let you all know after Tuesday what the plan ahead will be for me. Thanks for all the support. X