Breast Cancer Now Forum

Hi Di, Very sorry to hear this news and hope that the treatment you'll get will eliminate the hotspots. I had a CT scan last week which showed up what could have been a problem under my arm but which was deemed to be scar tissue from the op, however, it gave me some concern and I'm still not sure whether a nurse was qualified to decide exactly what it was. The best thing about your situation is that this has been discovered now and treatment can be targeted, particularly rads in exactly the right spot and chemo seems very effective in mopping up rogue cells so hope it will do that as it goes for the other bc. I remember my oncologist saying that if the bc cells went to another part of the body they were still bc cells and should respond to the chemo I was getting. Thinking of you. Love KC ... View more

Hi everyone, Hope side effects haven't been too hard today, I'm now on day 7 of my first EC90 and maybe because I've been busy it's seemed a bit of an easier day. I noticed that quite a few people have been mentioning scarves and I'd like to say you don't need to spend a lot on these. Primark have some fantastic spring and summer colours and they are about £3 each. I made a bit of a mistake of sending off for some quite expensive scarves, which are fantastic btw, from r and r confidence, but if I hadn't panicked myself into thinking I needed ready made ones I could have created some very stylish ones myself. I've been out twice wearing the Primark creations and had lots of lovely compliments. Today I got a beautiful wig in a copper colour, my husband says it's exactly the colour my hair was when we got married, he's obviously got a much better memory than me, but it is hugely flattering and I've decided much better than the dark colour my hair had become. When the chemo is over and my hair finally grows back I shall be keeping the lovely colour, it's made such a difference to me, makes me look years younger. KC ... View more

Didn't have the greatest night unfortunately but think that was because I took the second lot of steroids too late, more like tea time than after lunch so they kept me awake. Going to follow the instructions to the letter today. Think I might have done better without the constant hot flushes all night, if anyone has ideas about coping with those I'd love some tips. I'm fine with them during the day, hardly get any! Hope everyone else has a symptom free Sunday as far as possible and thanks to Choccie Muffin for the advice about the WBC. I want to find out when I will be safest to work in an aircon office so will phone the helpline tomorrow. KC ... View more

Hi everyone, I'm now at the end of day 3 after my first chemo of double EC and haven't even felt queasy so all the meds they have sent me home with have worked very well. I'm drinking at least two litres of water a day as well. I understand that on this regime the side effects can start about days 3/4 so I hope I'm not being over optimistic about it, I'll continue to keep taking the pills as prescribed. I do think I might be getting a cold though so going to keep out of shops etc for the next few days. Hope everyone else who had a treatment this week is OK. KC ... View more

Hi KellC and everyone, Thanks for the info about the steroids. I had my last dose to take at lunchtime but fell asleep so didn't take it until 4pm. I feel very tired so can't see it keeping me awake although if it does I'm OK about it. There are such a lot of tablets to take that I'm finding it difficult to remember what's what. Fortunately they gave me a chart which helps. I must ask my Macmillan nurse if I need to space out the doses to get the best effect as taking some at lunch and tea seems quite close together. I understand the worst of any side effects come on days 3 and 4 which is over the weekend so I haven't planned to do anything except stay at home although if I feel OK in the morning I might go out for a short time to get some fresh air. Until I know more about how I'll be affected I don't want to be more than 10 minutes drive from home. KC ... View more

Hi Carolyn, At my hospital you can get free car parking by getting a chitty from the unit and then presenting it with your ticket at the front desk where they validate the ticket. I sympathise though as nobody mentioned this to me and I must have spent about £20 before I found out. Worth asking. KC ... View more

Hi everyone, Had my first epirubicin and cyclophosphamide yesterday and fine so far although I don't feel great and have woken vey early possibly due to the meds I took last night to top me up. The procedure was fine and the nurse lovely. I took a friend for valuable moral support. I was told to drink plenty and by the time I went to bed my urine was pale as normal but I am going to drink the same 2litres again today and tomorrow as I was told it would help for the first three days. Didn't have any reaction from the steroid going in and don't have any other symptoms yet. Had a good meal last night and the food tasted better than normal. Just going to see what time I should start today's meds. It struck me that there doesn't seem to be any advice about how long to leave between doses. Took my last ones at 9pm and now it's 5.15 so I guess eight hours is a decent interval. Good luck to everyone today and hope nobody is suffering unacceptable problems. KC ... View more

Hi Everyone, Joan.... I'm having my first EC on Thursday, providing the CT scan I had today doesn't show any other problems. Hoping to get the result of that tomorrow. I went into Primark today and they have some great scarves, a huge selection. Also, if you put the words Chemotherapy and scarves or headwear into YouTube you can find lots of videos of people showing you how to use them. I made my first one this afternoon that way and it was pretty easy although I didn't expect it would be. KC ... View more

While I was at the hospital today I was given a copy of the oncologist's report and I'll only be getting chemo next week if the CT scan is clear. I don't know what happens if it isn't clear, the only thing that is said in the report is that if it isn't they will be having other discussions with me. I suppose I assumed that even if there was a problem with the scan that the treatment would still be going ahead as it would be better than nothing. Has anyone else had this issue? Thanks KC ... View more

Carmy, I spoke to someone yesterday who used a cold cap and didn't lose any or much of her hair and there are lots of similar cases I've read on the internet. I was shown the one at my hospital when I went on Monday and although I don't know if I will be able to tolerate it I will definitely give it a go. I tried one for size and it was explained how it worked. However, I was told that sometimes hair does fall out in patches. I wonder if maybe your own hospital doesn't have access to cold caps? I would definitely ask them as soon as you can. On another note, I went back to hospital today and one of the regular phlebotomists took the blood without any trouble so that's another job done. KC ... View more

Hi Everyone, Had my chat with the pharmacist and nurse today. The nurse was unable to get any blood out of my arm, hope she will have more luck with the cannula for the chemo next week. It all sounds OK, they have given me a list of what anti-emetic drugs I will be given together with the doses and a chart for when I have to take them. Also I have been given an emergency number for out of hours help and they promised if the side effects became intolerable there would be a drug to help. So I feel quite a bit more reassured, and not least because my BCC buddy phoned and she also gave me some excellent tips. Over the weekend I spent some time looking for pretty headwear in case the cold cap doesn't work and I came across two websites I liked randrconfidence.co.uk and bohemia fashions headwear. The first one has some beautiful silk creations and, while they're not cheap, I think they will be my first choice should I need them. KC ... View more

So sorry to hear about your cat Patchit, I went through something similar with mine four years ago and it's so upsetting. I've got quite a few hospital appointments before March 1, to see the pharmacist so he can work out the doses, the nurse for something I can't recall, physio, CT scan and something else. Nearly every day will be busy. I suspect I will get a permanent line for the drugs, that was talked about a while ago so I'll need to find time for that. My last appointment was to see the oncologist at 3.15pm and I was well over an hour late going in so incurred £4.20 of car park charges. I've now found that cancer patients at my hospital can get their card stamped so they don't have to pay, I wish someone had told me that before I started treatment, I've paid for lots of visits to this point. Might be worth everyone else asking if their hospitals have any concession. KC ... View more

Hi Everyone, I start my chemo on March 1 and I'm getting what's called "dose intense" where I get two full courses of treatment in the space of one. The first is epirubicin and cyclophosphamide for three sessions and then another three sessions of Taxotere. Essentially I'll be getting double doses so I've been warned it's going to be tough. I'm hoping to be able to work during part of it but I guess much depends on the side effects. Unfortunately I've got lobular invasive cancer and it was a large tumour with seven lymph nodes affected so they have said they are throwing everything at it. After this I get radiotherapy and then Arimidex. Yesterday Breast Cancer Care put me in touch with someone who has already had similar treatment and it was great to hear how she dealt with the side effects, which have been my biggest concern. I'll be talking to her again next week after I've seen the pharmacist. If anyone wants to talk their treatment over like this then just ring the helpline, they fixed me up with someone in just a few hours and I feel very reassured as a result. KC ... View more

Hi to everyone, Saw the oncologist yesterday and I start chemo on March 1. I'm getting two intensive treatments, the first of epirubicin and cyclophosphamide and then the second of Taxotere. Each would normally be given over 18 weeks but I'm getting two full courses in that time so I guess double doses. Was told it is going to be very intensive and tough and that only one of these two treatments will work but they don't know which. Also found out that the tumour was larger than the 70mm I was originally told as it's a type that spreads in tendrils and they gave up trying to measure it. I'm still planning to work during some of this but it depends how well the side effects can be controlled, from what I was told yesterday there should be plenty of drugs to help with that. Also I'm getting a CT scan before chemo starts to make sure it hasn't gone elsewhere as I have other symptoms which started shortly before I was diagnosed and which haven't been discounted yet. Although I'll keep coming back here I think I'll also join the chemo thread as there may be someone there who is having the same cocktail of drugs. Deb, Peanut, Fran, Lelly and Maggie, think we will be starting treatment about the same time. KC ... View more

Hi Deb, I'm also seeing the oncologist on Feb 14 so you're in good company. I'm planning to write down some questions to ask based around how soon I can start treatment and how feasible it will be for me to work during it. I also want to ask them to keep me properly in the loop because I had a call from my doctor yesterday about my holiday insurance claim and it turned out that she had been receiving letters from the hospital telling her something different to what was being told to me. ie. She was told I wasn't getting chemo while I definitely am getting it. It might be too strong to say that I feel like a non-person but I am unhappy that decisions are being made about my health when I am not being kept informed about them. KC ... View more

Jayne, I'd be interested in that wig shop in Leeds if you have the address. I know there are several arcades. Also wondered what sort of cost they are? Fran, good idea about your hair, think I may still have a few weeks before I start my chemo but thinking of getting it cut a couple of days before so it isn't so upsetting when it comes out. Good luck to anyone getting their results this week. I am a bit in limbo now until I see the oncologist in a week's time. KC ... View more

Went to M&S today to be fitted for one of their mastectomy bras. I found a couple I quite liked but unfortunately was told not to get one (possibly for months) due to the swelling under my arm and across the op site. This was checked out last week and I was told it will absorb in time. I found it very uncomfortable and not particularly pleasant, mainly because the lady doing the fitting did it up on the tightest hooks and then didn't bother to let the straps down, on any of them. I decided to give it up as a bad job and just to go to my local store and try some on for myself. I feel if I had been left to do it myself I would probably have found something that fit well enough. I'm worried that if I don't get one sorted out before I see the nurse for the prosthesis that I may have to keep using the softie which I keep having to adjust. Alternatively I am just thinking of using one of my pre-op bras. I'm using a soft sports one at the moment. Anyone got any views? Thanks KC ... View more

Chascat, Try not to panic too much, once you know what the problem is and are told what is happening about it then you will feel more in control. I found the worst time was between the doctor saying there was a problem and the two weeks later when I had the ultrasound and I knew from the radiologist that I had more than a cyst. The vast majority of people even those whose situations are not as good as others, do extremely well as there are so many treatments available and also more are coming along all the time. My eventual test results have turned out to be worse than I expected but even so, because of the great support here, and the fact I know I am going to get the best treatment the NHS can give me, I am not upset or worried, just going to get on with it and try to stay positive. I've surprised myself really, because I was panic stricken at the start of this! KC ... View more

Hi Mollie, We were supposed to be going on a cruise at the end of June but after talking to the consultant today we'll have to cancel it, he said the treatment would take at least six months. We're planning on getting our deposit back and rebooking for September but we'll have to make a late booking. I know from previous experience that insurance is pretty impossible to get if you are still having treatment or tests for something, even something as minor as cholesterol so I suspect that the premium will be bumped up hugely when we do get around to rebooking. Will definitely be earmarking something though, give us something nice to look forward to. KC ... View more

Hi Everyone, I'm in North Yorkshire. Saw the consultant today after the phone call yesterday. He said they weren't expecting to find so many (seven) lymph nodes affected. I pressed him a bit and he said the prognosis was poor. I'm OK about it though, I wouldn't have asked the question if I hadn't been prepared for that sort of answer, it wasn't any surprise. After the chemo I am getting 21 consecutive sessions of rads. Just wish I could get on with it. I don't have an appt with the oncologist until Feb 14 and then won't start chemo for probably another week. Despite that, I am very optimistic of a good outcome. KC ... View more