I need hope

Hi Emma/Embuffyfan10363b 

You wanted a positive story, so here's one

I was diagnosed with TNBC in April 2022. I had a lumpectomy, followed by chemotherapy (because there were microdeposits in one sentinel lymph node) and radiotherapy and here I am completely recovered and living life to the full.

Anne

PS. Happy to share any specific experiences with treatment that you'd like to know

((hugs))

Thank you so so much. I really do appreciate this. If we could follow each other on here and keep in touch that would be amazing. 

If you could tell me some specific experiences that would be amazing and how best to monitor after remission. Thank you again so much. Your message means everything to me. 

When I was diagnosed immunotherapy wasn't given alongside chemotherapy. What chemotherapy will you be having and, if it's the same as mine, I can tell you my experience with it.

Will you be having a lumpectomy or mastectomy and have they mentioned whether you'll be having radiotherapy or not?

After my main treatments I then had six-monthly infusions of Zometa, which is a bisphosphonate, for three years and didn't have any side effects from that.

I have a yearly mammogram and a yearly physical check-up with my oncologist, six months apart, so I feel happy with being checked every 6 months. Apart from that, if I'm concerned about anything I can speak to one of the breast cancer nurses.

Right now you'll probably feel that you have a long road of treatment ahead but it's amazing how quickly it passes and then you can get back on with your life.

Hi Embuffyfan. It’s horrible being diagnosed and waiting for treatment. Even if your cancer has spread, it doesn’t necessarily mean it is over. I have stage 4 TNBC; it had spread through my blood stream to my liver. I was treated with pembrolizumab and nab-Paclitaxel and have been in remission with no evidence of disease since stopping that treatment in September 23 and having a clean up ablation on my liver a few months later.

Also please don’t blame yourself. You almost certainly haven’t done anything to cause it other than being a woman with breasts. Cells divide all the time and sometimes something goes wrong. The fact that you have been offered immunotherapy means that your cancer, like mine, had the ability to hide from your immune system so your immune system couldn’t just clear it up. The immunotherapy works by allowing your immune system to ‘see’ the cancer. If it works well for you it will clear it up, as it did mine. 

if you click on my name you can see my story. There’s also a link to the blog I kept as I went through treatment. If you do read it, beware it wasn’t an easy journey but I came out the other side and am in a good place now. 

Thank you so so much for your lovely message. I have triple negative cancer in one breast. At the time of Pet scan and other tests two weeks ago it hasn't spread to lymph nodes but what if it has by now?? There feels like such a long wait between test and treatment and I don't know if I will ever know if it got to my lymph nodes or bloodstream

This is my treatment plan:.

1. Carboplatin/paclitaxel, EC + pembrolizumab for 5 months 

2. Surgery lumpectomy or cells. My tumour is 3/4 cm long so depending on if it shrinks it or not they might need to remove quite a big mass I don't know if this would be a mastectomy 

3. Immunotherapy after surgery for long I'm not sure. 

I start chemo on Friday and I am pretty terrified. I don't know what to expect and there are times of panic where I feel like I want to go to sleep and not wake up. 

Will I be able to work? 

If it's weekly will the effects wear off my day three? 

Thanks x

Thank you for your lovely message. I really do appreciate it. I have put my treatment plan on this thread. 

I honestly have no idea what to expect. I am in a panic 

Hi Emma,  it’s so hard to get your head round it mentally when we are young.  All I keep hearing is about this 5 year or 10 years but when your young that’s still doesn’t feel long enough. But what i’ve learned over this journey is to not google too, much trust in your doctors and just concentrate on week by week. I still have odd moments where I panic but it went by very quick for me.  I’m the same as you and the same treatment accEpt I had very large tumour 7.5cm so had full mastectomy. I was certain it had gone to my lymph nodes because of how big it was even though they said they couldn’t see any evidence of that.  I had to wait till my treatment was over and I had surgery to find out for sure.  And it hadn’t spread. So trust what what say.  I’m heading off for my first radiotherapy session and hope that i don’t have  many side effects from that.   Then onto the immuno for 6 months.  I copped well with all the different chemo drugs Pembroze pax and EC alongside immuno too. And had a complete response to them which is great for a large tumour.  Recovery from the surgery was harder as I had mastectomy and reconstruction and reduction on the other side to match and diep flap and tummy tuck so I literally couldn’t move for weeks.  You will get through it cos you have to and you will realise that it’s worth it because it’s fighting the cancer, the drugs are amazing now.  I’m clear now and obviously worried about reoccurrence but have to just try enjoy life rather than worrying about what I eat or drink.  Good luck with your treatment and keep smiling honestly it helps xxx

Thank you so so much for this. Could I ask how the chemo made you feel? 

I am weekly for 12 weeks then three weekly for 11 weeks. Could you do anything during chemo? Any occasional nights out? I am finding it hard knowing these me my last normal days before I become a sick zombie for 6 months. 

Thank you sorry I know I'm asking a lot. You are amazing! Xx

Hi Embuffyfan10363b 

I had a lumpectomy followed by chemotherapy and radiotherapy. The lumpectomy was just day surgery so I didn't need to stay in overnight. 

My chemotherapy was 3 cycles of epirubicin and cyclophospamide (EC) followed by 12 cycles of paclitaxel. 

The EC was given once every 3 weeks and my main side effect was losing my hair. I found that for about the first 10 days each cycle I just felt a bit lethargic but after that I'd feel fine. I had paclitaxel weekly and didn't get any side effects while on that.

I had already retired when I was diagnosed so didn't need to worry about work. You won't really know whether you're likely to be able to carry on working while having treatment until you have it as it affects everyone differently. One thing you do need to bear in mind though, is that you need to be able to keep away from people who are ill with colds, etc as your immune system will be seriously affected by the chemo. So working might depend on how closely you work with other people.

Try not to worry about having chemo as you'll be well looked after and given contact numbers to contact afterwards if you're worried about any side effects, etc.

((hugs))

Ofcourse, yes I had the same treatment plan.  The first 3 months were worse having it every week.  As as soon as I felt better I had to go again.  But once it switched to the 3 weekly sessions that Was much better so just think by the spring you’ll be able to do more. Also I still went out for walks and played tennis on the third week.  I was tired in the evenings and I didn’t feel like going out much anyway.  You won’t want alchohol as your tastes change so much lol    But everyone is different so just go with it and do what you feel you can.  The more you do the better you cope I feel.  If you just stay in you’ll feel worse.  Go out and get exercise and fresh air.  X