hi just recently diagnosed with stage 3 breast cancer has marker clip in and got mri and ct scan wed then awaiting chemo. all scary stuff and still in shock. cold cap worth it or not? can you take someone in while you having chemo etc thanks
Hi madd,
it might be worth posting this in the January starters thread. (Under the monthly starters heading). There are quite a few of us who have started this month and it’s great to share information and experiences. I’m on there too.
There’s some discussion on there about cold capping. I’m not, but I know some people are.
There shouldn’t be any problem with taking someone in with you for chemo. I did my first one last Monday and about 2/3 of people had soneone with them. Try not to worry about the actual chemo process too much. I know it’s easy to say, but it was actually the most relaxing thing I’ve been through since diagnosis!
I’I’ve had a marker coil in too, MRI and CT, and expecting results sometime. (Christmas has been a bit of an issue for the NHS in London. Apparently no one told them it was happening).
I hope that helps as a starter and hope to see you over in Chemo Jan 2017
Ali x
thanks for the reply and reassurance new to this site so not up on how it works may I ask why you chose not to use cold cap as few people saying don’t bother as is painful etc. good to talk to people in the same boat x
I have long thick hair (until tomorrow anyway). I heard that you always lose some even with the cold cap. A (real life) friend of mine said that she lost about half. I’d honestly rather be bald all over than have this or patchy hair. Plus I don’t really like cold on my head, and I figured that I don’t care that much. Hair/boobs seem less important than they did.
But I know others will have a different view.
ok I’m going to say hello in the other thread.
Ali x
thanks for info mine is down my back. think I’m in agreement would rather take it off than some cone out and wake up to it on my pillow etc. are you planning on wearing a wig? I’m thinking of donating my hair and getting one x
I think it’s a good idea. I have got a wig. I’m in London and Giys organised a fitting for me. It’s quite nice, a choppy bob and I think I’ll wear it for public facing work. But when I’m working from home I’ll probably stick to scarves.
I don’t think I’ll donate mine, but mainly because I was growing out the dye and it’s a bit streaky. I’ll keep it in a drawer and frighten small children with it. (Only joking).
Sorry you’re here & it’s crap that you have a two year old while you’re going through it. Everyone is really good, lots of people in different situations so there is always someone who can empathise.
Ali x
can i ask did you buy the wig yourself and is it easy to put on etc? have you just had 1 lot of chemo so far? x
Sorry, also worth asking if they have a support group. This place is great but I think it can be good to meet people who are in the local system too.
I live in Durham so probably different here I’ve heard you can get a free one but it’s synthetic & not sure if I should invest in a better one. not sure i know they said most cancers live off oestrogen but mine doesn’t and something about double negative but waiting for last result. they are wanting to shrink the lump with chemo before surgery as it’s 33mm x
can i ask what happens when you go for first chemo x
Mine is synthetic, but it’s fine. If I’d bought her the price was £165. I’d say get the free one and see how you feel.
ok so you’re either ER-/HER+ or you’re triple negative. They may be doing more tests, I didn’t find out I was HER+ until a week after my first results.
Happy to run through it, but I’m off to bed now.
Have a a look at this leaflet. breastcancercare.org.uk/information-support/publication/chemotherapy-breast-cancer-bcc17
and I’ll catch up with you tomorrow. Try not to stress, the actual chemo isn’t too bad at all.
Ali x
thanks for the link will have a read… just daunting your first time not knowing what is going to happen will I get oncology app before chemo? not sure what the triple negative thing means really. how long did you feel poorly for after I know everyone is different x
I understand. The best advice I have (apart from yesterday’s link) is to read the Jan and maybe December chemo threads. People say what they’ve had happen so it gives a flavour. But don’t worry, you will see an oncologist before you have chemo and she/he will talk you through it. You will probably then meet the chemo nurses before the actual appointment and they will talk you through the practical stuff.
So you don’t know yet if you are triple negative for certain. You could be either hormone negative and HER postive or triple negative. It’s about what the tumour responds to, and your type will determin what treatment you get. Try not to worry until you know.
I’m not sure if you are posting on other threads, but have a look around anyway. You won’t know everything very quickly so it’s often really good to read a few.
Let me know when you have an appointment and what it is.
Ali x
hi i just know my consultant said most cancers live off oestrogen but mine doesnt & should hopefully respond well to chemo. had mri scan yesterday and hated the cannula ? couldn’t do ct scan same day as needed injecting with the dye both times. ct & results hopefully friday x
Yup it’s not very nice. When you see the oncologist get them to write down your treatment for you. Mine did and it meant I could ask people about it afterwards.
i had my CT last week and they’ve found it in my lymph nodes, which isn’t great. But at least they didn’t find it anywhere else. They checked my lungs, liver, bowel and bones. So I’ve got a long treatment in front of me. But hopefully I can beat it.
ill be thinking of you tomorrow. Take care
Ali x
Hi Ali and madd
Just noticed you guys on your own on here sorry I must have missed your message madd .
Ali has given you some good advice - and the chemo threads are really good … I’m s2 Er positive with lymph too . No treatment plan yet so I can’t help with information stuff sorry ,but I can be here if you need a virtual friend and ear to talk too .
Ali what an a amazing relief… I can the feel it from here ( rural Herefordshire) … I’m so scared it’s in my bones and other places so I can imagine what a game changer that news is for you - I can’t wait to breath for the first time in a while … and never mind the nodes ? as we all know ?nodes or no nodes … they get them out and they’ve gone xxxxx
Thanks, Zena.
i think most of us stress about secondaries, but I really feel like I’m incredibly lucky. Which is ironic giving what we are all going through.
You know I’ve got everything crossed for you, So when’s your next appointment!
Ali x
Hey ladies ,
Sadly not Helena ( or so my kids think ) although a sprinkling of snow would be delightful…im not into driving in bad weather… but over the weekend would be lovely actually…, a snowy wAlk fills me with memories of childhood aww I’m getting sentimental about snow lol…
It’s Monday Ali - long time , 10 days since MRI so I hope it’s a good appt , I want a ct scan now too ; asap to catch your good luck Hun xxxx
thanks ali had results and its nowhere else. got to wait for oncology app next then chemo start date. im triple negative think i have to have six sessions of chemo. tried wigs onto and i felt like crying didnt look as natural as i had hoped. we can beat this stay strong x
Hey you,
So brilliant, brilliant news that it’s nowhere else. Triple negative does respond well to chemo, so you’re getting exactly the right treatment. I know what you mean about wigs, but it’s short term pain to get your life back, so yes we can do this. Do you know when you start?
Ali x