Newly Diagnosed

Really sorry you’ve joined this club, but on the plus side everyone here is friendly and helpful. 

i can’t help with your specific type of breast cancer, or chemo, but am happy to share my experience of starting radiotherapy in case it helps reassure you.

When I met the consultant oncologist it was very businesslike, unlike my previous experience with my breast surgeon who took time to talk everything through and covered the pros and cons. This was very different. I was told all the possible side effects of the radiotherapy and asked to sign a consent form. It wasn’t a balanced discussion and could easily have made me change my mind, which I didn’t do, as the much more considered discussion with the surgeon had convinced me it was the best option for me. 

I know they have to make sure we give informed consent, but sometimes the way it’s done is unhelpful. 

I know from reading the forums that chemo affects people differently, and whilst no one describes it as something they would do if they didn’t have to many describe it as tolerable. I’m sure someone with more experience than me will reply soon.

good luck and sending hugs

Thanks for replying - I can cope with tolerable (I think). I know I have to be made aware of all the side effects but it sounds terrifying 

Hi Marg06 sorry you are in this situation. As Carrie December said chemo isn't something I would have chosen to go through but it was a no brainer for me even though I'm cancer free. If it reduces the risk of recurrence it was a no brainer. Yes it's scary and yes there are lots of potential side effects but you may or may not get them. I had 4 cycles of ec and three cycles of docetaxel. I tried cold capping but gave up as it was too uncomfortable. I have lost about 80 percent of hair on my head and all body hair but the head hair is already growing back. I have ongoing constipation issues. However apart from that I have done pretty well and been able to work from home throughout. I also had one lot of sepsis that put me in hospital overnight. 

As you are signing a consent form your oncologist has to be very thorough and go through every potential side effect before you sign. 

Keeping everything crossed for you xxx

Receiving a cancer diagnosis is always a terrible shock  to the system. I myself went through that a couple of days ago. Now I am waiting for all the scans and additional tests that will determine if the cancer had spread or not and as you can easily imagine the waiting is brutal. I'm trying to think about what's next in terms of days not weeks or months and also thinking how I can cope with what's coming as best as I possibly can which sometimes helps a little bit. Just trying to take a step at a time. I still don't have all the answers cancer stage and prognosis wise which is extremely frustrating but there really isn't much I can do about it - the wait will be over at some point in time and I somehow will have to cope with the situation. In your case it doesn't have to be as terrible as many people describe it - some people don't have all the terrible side effects of chemo and other treatments so fingers crossed and good luck! Big hug, xx 

Thank you for replying. I’m amazed that you managed to work throughout it all! That in itself makes me a little less scared. I know I’m having 6 cycles each 3 weeks apart and I’ve been given leaflets on docetaxel, carboplatin, trastuzumab and pertuzumab. It’s all very new at the moment and I’m struggling to keep up with it all. I know it’s chemo first, then surgery, then radiotherapy. I’ve had a number of scans already, next week I’ve got a pet ct scan and tests to make sure my heart and kidneys can cope with the treatment. I’m trying to prepare myself for losing my hair, I think I’ll find that very difficult. The doctor mentioned I would probably get stomach issues like diarrhoea and nausea oh and my nails might fall off. 
Thank you so much for reaching out it’s really good to know I’m not alone 

Hi Lana65

Thanks for replying. It sounds as if I’m a couple of days ahead of you as I’ve had some tests done and I’m waiting for others. Yes the 2 weeks wait from biopsy to results was just awful though I was kind of expecting the worst by the way they responded to my mammogram and ultrasound. I don’t have the cancer stage yet either and I’m not sure I want to know. I hope all your scans and tests go well and I’m sending you back a big hug too!

I was told wearing black nail varnish can help with the nails. And your chemo drugs may not be a tough as ec for the hairloss. Mine actually started growing back during docetaxel

Oh wow That’ll be like going back to the 80s! I wonder why that works? Thanks for the advice 

Not a clue why that works

It’s because chemo makes us very sensitive to UV sunlight, and the black nail varnish helps to protect the nails. My nails didn’t fall out, I know only a couple of people that happened to. Most of us have discoloured nails though, a bit bruised looking, but they grow out. . It’s sounds like you have been told many worst case scenarios re: chemo, but not everyone gets side effects - some sail through. I did find Docetaxal tougher than EC (I didn’t feel like I was on chemo with EC) but I’m still glad I had it, and I did get through it by resting, changing my diet to more tasty foods (I lost my sense of taste during the last two cycles), taking gentle walks when I could, staying in touch with support groups, and listening to audio books and plays on the radio. And it’s common for hair to start growing back during Docetaxal. This can be a frightening time for some people, so stay with us if you need to. Xx