Hi,
I live in Middlesbrough and had a mastectomy on 21st Dec 09 and yesterday was given the results. I will be having the lot, Chemo, Radiotherapy and Tamoxifen. Waiting to go and arrange when Chemo will start. Even though everything has been explained to me by nurses would love to talk to anyone who can advise what I can expect and what I could do to make myself as strong as possible to cope with this.
Do ice caps work?? Should I get my hair cut short in preparation of losing it??
Hi Richo
Welcome to the BCC discussion forums, you’ve come to the right place for support as the many informed users of this site have a wealth of information between them.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
best wishes
June, moderator
Hi Richo
Sorry you had to join us but we all understand what you are going through. I had lumpectormy in Oct 09 and am currently half way through chemo. I will also be having rads and tamoxifen. Everyone reacts differently to the chemo; some are lucky enough to have very few side effects and some have the lot. Although i dont know how you will react, I can say that it is do able, but then again, what choice do we have. You are more than likely to lose your hair; they may offer you the cold cap which can reduce this, but its personal choice. I would recommend looking for a wig and stocking up on beanies and bandanas. If you havent had the flu and swine flu jab, I would suggest that you consider this; your immunity will drop about 10 days after each chemo, making you vunerable to infection. There is so much I could tell you. Just post us if there’s anything specific you would like to know about, we’ve all been there.
Take care
Julia xx
Hi Richo,
Sorry you’ve had to join us here but you’ll find lots of advice and support.
I’m currently having chemo before surgery and will be having my third cycle of FEC tomorrow (providing the roads are passable!). Do you know which chemo you will be having? If it’s FEC then you might find the thread at breastcancercare.org.uk/forum/1st-chemo-17th-dec-doing-okay-so-far-t24642.html useful as there’s a few of us there who have been talking about how the first few cycles have been for us.
I’ve been using the cold cap and it seems to be working, my hair has thinned a lot but I still have enough not to need to cover up in any way. I had my hair cut shorter but not short before my second chemo - went from just below shoulder length to ‘mid neck’, needed a cut to tidy it up and thought it might help to reduce the weight on the roots.
Good luck with your treatment, it’s daunting but do-able, just take it one step at a time.
Linda
xxx
Linda,
Thanks for your reply, not sure what form of chemo, to tell you the truth did’nt even know there were different types. Will hopefully find out when I get to go back for my weigh in etc. This is wonderful being able to talk to women going through the same thing.
Good luck tomorrow and thanks again xx
Hi Richo
Just wanted to reiterate everyone elses comments that there is always someone for you to ‘sound off’ to should you need to and say that despite what you hear about chemo and generally its all the negatives, it will be okay and dont make too many expectations about it. Read up on the ‘top tips for chemo’ thread especially the first 10 pages - loads of really helpful tips. For a chuckle about some of our experiences when you are feeling down about it - try ‘and on a brighter note’ and ‘not what to say’.
Due my 2nd chemo tomorrow and I opted to shave my head to a number 2 when it started to come out in small tufts last week - did consider the cold cap but freezing my head intentionally to save my hair was not for me! bit of a chicken when it comes to the cold:) And being bald has been quite a liberating experience but you do get a free wig. My only advice would be use these forums - there are lots of lovely ladies to ask anything of.
Best wishes - stay in touch Leigh xx
Hi Richo
I have now had 4 cycles of Fec Chemo, have used the cold cap and can report that I have had excellent results using it, I dont think I have had any thinning at all, when I started I decided not to have my hair cut at all as I wanted to see what would happen, nothing has, and I honestly think that I havent even had the normal amount of loss I would have had without the chemo! It has been great as I was really worried about losing my hair - I just hope it doesnt all decide to drop out on the last cycle ha ha!
It is not the nicest thing I have ever done in my life, but it is doable, you just have to get on with it really and if you have any side effects make sure you talk to the hospital so they can help you deal with them at the time.
Waffling - sorry! I would say just try the cold cap, it isnt pleasant for the first 15 minutes and it does extend your stay on the ward as you have to have it for about 40 mins before the chemo and then 2 hours after, but once your head goes numb it really isnt that bad! and I dont think it matters if you have your hair cut or not, mine is now below my shoulders and is naturaly very thick so the volume does not seem to have made that much difference. - one of the best benefits of chemo is not having excess hair anywhere else though, its great not to have to shave legs and underarms etc!
Dena x
Hi,
Yesterday had to tell friends and family that my treatment involved having chemo. Almost everyone comes back saying “so sorry” its as if once the chemo word is mentioned you are at deaths door. I am trying so hard to stay positive but I feel at the moment I am spending most of my time trying to help everyone else come to terms with it and cheer them up! I’ve got the nervous tummy back and feel quite scared now. I am quite thin, only way 8st 8 and worried about keeping up my strength.
Sorry just feeling down today xx
Hi Richo, its natural to be feeling anxious - my anxiety didnt go til I had my 1st chemo and discovered it wasnt as bad as I thought - I had 6 lots of FEC and was able to work pretty much the whole time - would feel rough for about 4 days after but then pick up. I tried and found the cold cap ok but sadly it didnt work for me. I wore a wig throughout treatment and my hair started to return almost immediately after chemo no 6 and am sporting a very short (but all mine) sytle! Am now on Tamoxifen and again find it ok - hot flushes dealt with by sticking head out of window day or night.One little tip - if they give you steroids after chemo - take them before 3pm or else you will be awake in the wee small hours - they also pile on the pounds so enjoy your svelte like figure !! Keep in touch and the very best of luck x Debbie x
Hi Richo
I think its important to remember that chemo is your friend. Its whizzing around, mopping up any stray cells that might have escaped.
It gives us the best chance of beating this disease, or keeping it in check.
Julia xx
Julia,
That was a great way of putting it, thanks xxx
Hi there
I was recommended to have chemo just before Christmas. I had 2 WLE and 3 nodes removed. The original plan was just radiotherapy as none of the nodes were affected. This changed at Christmas wen the team recommended chemo and then radiotherapy. This decision came totally out of the blue and i was completely gutted. So when friends and family asked “why?” i just couldn’t get my head round it - it wasn’t on the move and they had got it all out - so why?
Julia is spot on with what she has written it took me a few days to realise that it was being given for a positive reason. My first EPI is next Tuesday - i can honesty say i was dreading it - having chemo is my really my worst nightmare. But the thing i fear most is the fear of it. Reading all the comments on many of these threads all i can say now is Bring it On. I am still worried ( i am a worrier ) but i don;t fear it anymore. I have learned so much and i am now so much more informed about it all i do feel that i am in a better place. The support given by everyone (and this is only my second post) to everyone with practical help, advice, and just a listening ear is fantastic. It has really really helped me for which i will be eternally grateful as they have helped me get thro some dark times.
Love and hugs XX
Hi there pearlysox,
I agree, this website is a godsend, I have not started treatment yet, have appointment with oncologist on Thursday 14th Jan. Once I know what kind of chemo I am getting I am sure I will be back on here asking for advice/hints/tips to get through it, and I feel so much better knowing that wonderful people who I have never met are out there offering support and comfort.
One thing I struggle with is all the abrievations.
Hope all goes well with your EPI (??) next Tuesday.
Best wishes
Anne
Hi Anne
good luck with your appointment on Thurs. i know what you mean about the abbreviations, they had me stumped for ages. Some are bc (breast cancer) specific, like EPI which is Epirubicin the ‘E’ in FEC chemotherapy and others are more general online language, like LMAO (laughed my ass off) which I struggled with for a bit as I’m clearly a bit of an old fogie. I just asked what people meant in the end and then got the hang of it.
You should get a prescription for a wig from your oncologist or chemo unit and you will need to check if the cold cap is available where you are being treated, if you want to use it, then make sure the chemo staff know so they can get everything set up.
It’s so very daunting a thing to face, but amazingly doable. Seeing chemo as your friend is really useful and also just getting your head down, psychologically and doing it. There is a lot of information from chemo units and from this site about all the different chemo combinations and the thread ‘top tips for chemo’ is a cracker.
I’ve just started looking at the radiotherapy tips, as thats next for me (just finished FECx6) and finding the info for that really useful and helpful.
Talk about a learning curve!
Hope it goes well on thurs and in the weeks to follow - also for you pearlysox and all chemo starters
love
monica
I live in Sunderland, not that far from you