Welcome to Cancer Chat Nanuk.

I'm sorry about your mum's diagnosis and for the impact the wait for treatment is having. We have some information on our website about chemotherapy and radiotherapy including their side effects which I hope will put your mum's fears at ease slightly but if you or your mum would like to talk this through with someone then do give our cancer nurses a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

I also wanted to put in touch with [@Anxciouslady]‍, [@mumof3angels]‍ and [@Dondon0808]‍ as they have both had triple negative breast cancer so hopefully they'll share their advice and experiences with you when they can now I've mentioned them in this post.

I really hope your mum doesn't have too much longer to wait and wish her all the best with her treatment if she decides to go ahead.

Best wishes to you both, 

Steph, Cancer Chat Moderator

Hi Nanuk

I'm sorry to hear about your mums diagnosis and the dilemma she finds herself in.

I was  diagnosed  with triple negative  breast  cancer  grade 3 in October last year. I had a 5cm tumour in my left breast and lymph node involvement  too.

 Because of the size of my lumps my oncologist  wanted to shrink them first with chemotherapy to make surgery less invasive later on.

I started  my chemotherapy  in November  and  finished  6 weeks ago, and I am now just recovering  from a lumpectomy  and full axillary  node clearance.

The chemotherapy was very gruelling  but I was lucky in that I didn't  experience some of the  side effects that some people do.

It mainly  caused me fatigue and being short of breath and also mouth ulcers and sore  gums.

I had some hair loss too but this was minimal as I used the scalp cooling cap.

I had my biopsy follow up from my surgery last week and I am now cancer free, and all the pain and suffering  has been worth every minute  to still be here and watch my 3 children 4, 5 and 12 grow up.

I would advise your mum to go with the chemotherapy as it's needed to mop up any c cells that have stayed elsewhere  in the body

It really is a small sacrifice  for staying well and fighting  this disease.

I am just waiting  for a date to start my radiotherapy  now and I feel so blessed to have come this far with the outcome I have had as I have had  a lot of setbacks along the way  but it was positive  thinking and my children that got me through this and learning to live from day to day.

I wish  your mum all the best and suggest you follow up as to why the chemotherapy  referral  is taking so long.

Best wishes 

Hi , I’m sorry about your moms diagnosis, I was diagnosed with TNBC 19/12/2018 .. 1.5 cm Tumour, no lymph node involvement... I had a lumpectomy on the 4/01/2019 and started chemo 5/3/2019 it’s my last one on Friday (24/5/2019) that will be 6 in total , Then I start radiation on the 24/6/2019 for 20 sessions . The chemo hasn’t been too bad really , I’ve kept a full time job going , the fatigue gets worse as you go along , i was bouncing back quite quickly after 1-3 but after no 4 it was harder , I lost all my hair before my 2nd treatment, and the taste in my mouth is gross ! Which lasts about 10days .  Very dizzy after treatment and eyesight suffers a bit but get to the 5,6 ,7th day after she will start to perk up . Do keep her active , housework , gardening ,walking , as it’s better for the side effects they don’t seem so bad for some reason . I hope this helps you & she isn’t on her own in this ... oh sorry this reply is meant for [@Nanuk]‍ . 

Hi, we have a similar breast cancer. Could I ask how long after you had surgery did you have radiotherapy? Did you have an oral chemo after surgery too? Hope you're doing well now x

Hi, ok thanks for your message x

Hi, I'm sorry you are going through all of this and finding yourself here.

My journey began in October 2018.

I had six rounds of chemotherapy, a lumpectomy and then after 3 months after that I had 21 sessions of radiotherapy where I attended on a daily basis at the hospital.

I wasn't offered oral chemo like some other patients as I had a complete response to treatment and nothing further was mentioned.

In December 2020 I had a double bilateral masectomy and LD reconstruction as a preventative measure due to me being a carrier of the Brca 1 gene.

I've recently had my 4 year check and everything was fine but I still get very anxious beforehand and do worry about recurrence but I try hard to put it to the back of my mind.

My main issue still is mobility because of the surgery on my back, I find certain things difficult which weren't so before but mentally it does get easier once you have a treatment plan in place and focus on that.

I wish you all the best in your journey.

I do still come on here now and again but not the way I did before when going through treatment.

If you require any other information, I'm more than happy to help.

Take care & look after yourself 

Karyn x

Thanks for replying Karyn. I've had 6 months chemo , mastectomy of left breast. Pathology says partial response to chemo, from 5cm to 11mm and 4 lymph nodes to 2.

My surgeon said I'll be having radiotherapy and oral chemo but oncologist just said he only wanted to do radiotherapy ‍♀️ I've said as I've now braced myself for both I think that's what I'd like to do as a belt and braces which he said we can do. But he seemed concerned about delaying radiotherapy to have chemo. I'm going to call breast care nurse on Monday to say I think I'd like to do radiotherapy first.
I just struggle with these appointments because I think I know what they're going to say and then there's a change which completely wrong foots me and puts my head in a spin. I leave the appointment and an hour later I have more questions and I kick myself for not thinking of them at the time.
Im so pleased to hear you're doing well all these years later. It gives me hope which I need some of at the moment x

HI becfindinghope,

We all tend to forget important questions during our consultations. I have had 2 bouts of breast cancer in the past 13 years and find that the easiest way to avoid this happening, is to write down a list of questions prior to your appointment. It can be helpful to ask someone else to add any questions that you may have omitted too.

I usually bring my hubby with me. I give him a copy of my list and he usually writes down the answers, as I ask them. It is all too easy to forget answers too, before we leave the hospital gates. Your surgeon should be used to this, as many of us do this.

I hope that all goes well with your treatment.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thanks so much for your reply. I'm calling my breast care nurses tomorrow morning so hopefully I'll feel better after that and my further treatment is definitely agreed and planned. 
I will, just knowing there's other women out there who just "get it" is a huge comfort and support x