Breast Cancer Now Forum

Hi, glad that you had some helpful info from the surgeon. Not surprised that you've had lots of pain with all that going on! Sorry to confuse everyone about chemo bit. Whether it is the bone marrow injections or effects of chemo I have found both the areas around the mastectomy and portacath feel really tender the night after chemo and for the next few evenings. Having said that it also feels tender around my jaw and shoulders. Apparently I'm really sensitive to one of the FEC drugs, so just put it down to that. It goes away thankfully within a few days! ... View more

Hi I had one fitted in June, just after my first chemo. I did have discomfort in the beginning and found it really difficult to sleep as couldn't lay on mastectomy side. Although it felt really tender it did get better though. You might find it hurts more after each chemo though as I have found it quite painful then. I don't think it is to do with them accessing it. I'd definitely mention to chemo nurse, as they really know about ports, and helped with the skin/stiches after care. Hope it feels better soon. Alice x ... View more

Hi Loopy, I've been pretty rubbish at posting recently, have had 3 FEC and have my first taxotere on Tuesday. There is a great hints and tips thread which I round really helpful. I found losing my hair a bit of a mixed bag really. I had my hair cut short by a great friend of a friend who is a hairdresser (I had a long curly blond bob), warned my 4 year old that my hair was all going to fall out and then asked my sister-in-laws for help with tying scarves. The falling out was awful, and a real mess, I wore a cap at night to avoid it going everywhere. Now it's gone it's not so bad - doesn't really look like me when I look in the mirrow, but it's not for ever. I have had a bit of bad time on FEC, but this week I feel great! I took all the meds (sickness/steriods) and now also have bone marrow booster injections every cycle. I found it really hard to sleep after the first few days - lots of tossing and turning, my scar really hurt and where they fitted the port really hurt too. Although it can be a real battering, a lot of the side effects are sortable. Keep asking for help from your Onc team if some of the side effects are a problem. I had a really itchy skin rash from FEC for 4 weeks - over my back, chest and face - looked lovely with my newly bald head! I asked 2 doctors what it was and no one knew, the third doctor - bless her, said it was a reaction to FEC - a bacterial infection and prescribed antibiotics. Within days the rash started to calm down and it has now gone. I had a break because my blood count was too low, and whether it was a co-incidence or not some hair on my head grew back. Chemo nurse said taxotere would get rid of it - so short lived, but gives hope about how quickly things can get back to normal. I haven't lost all of my eyebrows (but lost leg hair etc - yippee) but they have thinned. Some lovely ladies mentioned Benefit Browzings - and I have to say it works really well - not cheap, but soooo worth it. I have a place at "look good...feel better" workshop at my hospital in August,supposed to help with make-up etc, not sure what it will be like, but I'll give anything a go that might help (also apparently get a great goody-bag). Sorry, for long rambling post, hope it helps, as some else has said, everyone's experience is so different. I took a lot of comfort from some posts that said FEC was fine for them, it really isn't awful for everyone. Wishing you all the best for Thursday xx ... View more

Hi, I posted some of this on the chemo end of May thread. Have just got out of 7 night hospital stint. Mine dropped to 0.0 for days (Friday to Wednesday). Finally it was the 3 days of gcsf that made the shift. I was allowed home last night. I didn't feel really ill at all. Will call to check things in future as explained away things like getting puffed walking up stairs. Will have gcsf after next chemo - on Tuesday! Very worried now that portacath will cause problems as will be having this fitted on Monday. Didn't even think about getting infections from it! Hospital says everything will be fine, but both my portacath and chemo was on/off all week. Glad I was in hospital and being really looked after -loads of obs, loads of checking blood and doctors round regularly through out the day and night. Having read something since came out can see why they made a fuss. Hope your birthday wasn't too bad. Alice xxx ... View more

Hi all, good to catch up on everyone and how you are all doing. Have been in hospital for 7 nights, finally out last night. Managed to get an infection on first FEC! neutropenic sepsis, count 0.0 from Friday to Wednesday! All under control now, loads of IV antibiotics and then finally I had bone marrow boosters. Unbelievably back in on Monday for port-a-cath operation and then FEC second cycle starts on Tuesday. I will have bone marrow boosters and then loads of antibiotics after that. At the time I didn't even feel really ill, that's the scary part of it. I was even thinking of going back to work!!! Decided not to now. Normally very healthy and have decided to take it very easy now - even though nothing to do with it. Lots of love Alice xx ... View more

Hi end of May gang. Had my first FEC on 26, day 1 and 2 were bad but getting back to normal since then. Even went to a party Friday night with my husband, stayed in a hotel and had my little girl looked after for the night and for most of the rest of the day. I had all the FEC combat tips printed out, and think that lucozade is my new best friend! Hair still in once piece, but being chopped short on Wednesday. Anyone else had funny medium range blurred vision? had my eyes tested recently so don't think it is that. Apart from a small number of minor side effects, it is really not as bad now. Queasiness is like morning sickness, so just following my tummy! What a downside though, it's not good to be out in the sun is it.x Glad to be back posting and catching up! Sending lots of love Alice xx ... View more

Hi, thanks for the posts. I had mastectomy and clearance on 24 April, and it was probably the only option in the end. They found more lumps and other stuff going on in between. Also as it has spread to all the lymphs I'm not sure whether there would have been much of an option to do anything else. My surgeon has done a good job considering, it is a really neat scar, not half as bad as the google images. There is a bit of swelling that goes up and down depending on what I end up doing during the day, but when it is all healed up I'm sure it will be fine. My surgeon was also right not to do reconstruction immediately as in addition to chemo I'll need radiotherapy too. Still I think it is always right to question what they are proposing, as it is your body after all!! Love Alice xxx ... View more

Hi All, sSorry being very nosey, which blog? I start chemo tomorrow. Alice xxx ... View more

Hi everyone, I was on this site so much on Friday and maybe Saturday that I thought I would give it a bit of a rest! Just wanted to wish everyone good luck with their treatment, I start tomorrow, so not sure whether to have quite a few glasses of wine (good thing to do) or drink lots of water (right thing to do). Will keep you posted about effects of FEC tomorrow. Lots of warm wishes Alice xxx ... View more

Hi, not sure this helps the discussion about going back to work but, I've been off since 24 April (mastectomy), and will be starting FEC-T on Tuesday, then rads. My onc said I might be able to do "very part-time work", if I'm lucky as he said the treatment is "punchy". Discussed with my manager today, and his view was for me to make sure that I get better and to really think hard before coming in or working from home. I'm not usually off sick not even odd days. It feels very strange not working, and post-surgery I've been up and about visiting friends. I'm just going to play it by ear. I'm normally a person that goes to work whatever, but this feels at the moment like such a big thing to get over, and I don't want to knock myself out. I have a 3 year old, and I just feel that I'd like to give a bit of my better days to her too. Post mastectomy I thought I'd be able to go back after 3 weeks as I was starting to feel fine, but getting well doesn't always follow a straight path and I've decided not to beat myself up about being off for a bit. I know I'm very lucky to have a very supportive working environment (at the moment at least...) and not everyone is in the same position. ... View more

Hi Mumszy and all, I'm starting FEC-T on 26 May - 6 sessions. Then rads, then herceptin, then tamoxofen. Went to the chemo ward on Tuesday to have some bloods done, at least I know what to expect. Having a port fitted which was described by the oncologist as a bubble under the skin. Barts fit it with a general, but I was told it was a very short op. Not too much to worry about I expect though, after mastectomy! I have posted elsewhere, but have grade 2 stage 3 (in 12/12 lymphs)3.5 cm lump and other smaller lumps. No spread confirmed this week - so that's immediately made me feel more positve about the "punchy" treatment. A friend is a hairdresser and they will be cutting my hair shorter next week, struggling with finding bandanas - or more to the point fitting them - I look a bit odd putting up to my face in all the high street shops! Great to keep in touch to share this really nasty journey. Love AliceB xxx ... View more

Cheers Debs, I'll give it a go. I probably need to boost my skin in prep for chemo and rads. When are you starting chemo? I'm starting FEC-T on 26 May. Have to get results of bone and CT scan tomorrow though, I'm sure my flaky skin is an odd reaction to too much worrying/doing the pretending everything is fine thing. Good luck with your treatment. Thanks once again. Love Alice xxx ... View more

Sorry good luck on 18th xxx ... View more

Hi IOC, I agree it is all so fast, dx on 8 April, I had a mastectomy and clearance on 24 April, lump 3cm and other smaller ones. Grade 2 though, which is a bit of a relief, but 12/12 lymphs are infected, so now having scans for secondaries - scary stuff. Chemo planned for 26 May, FEC-T, then radiotherapy, a year of herceptin and then 5 years of Tamoxifen. So I feel that I've hit the jackpot so far with a full range of treatment. I'm having a portacaf fitted, which is under the skin and fitted under a general, they don't think that veins in only one arm can stand up to loads of injections and drips. I'm nervous about the scan results, not sure what state I'll be in by the time I get to chemo but I've just come off co-codamol and that seems to have had a bit of an effect on my digestive system! While I'm enjoying lots of good company with friends since my op, thinking of going back to work tomorrow as seems a long wait to get to chemo. BTW I have a 3 year old daughter who has been giggling at me only having one nipple and asking when will it grow back - wait until I start losing my hair! Good luck on 19th x ... View more

I was going to start a new thread, but found this one, so am very grateful, and will keep reading to keep my spirits up too. I had mastectomy and clearance on 24 April and just got my results back today - 12/12 nodes have cancer, I have Grade 2, but is positive (oestrogen and HER2 - I think all a bit of a blur), multifocal (spelling?). Not sure why they only removed 12 as it was supposed to be a full clearance. Apparently there are nodes higher up that weren't removed, very confused now. Oncologist felt collarbone and neck and didn't seem alarmed. Have to have a scan next week to see if spread. Oncologist thinks that it hasn't but needs to be sure. One hurdle after another. Have chemo, herceptin, radiology and tamoxifen all planned. Funny that surgery now really feels like a walk in the park compared to all this. Didn't know there were stages and grades, so not sure what stage the cancer is, I suppose I can ask the oncologist when I go back to the clinic. Have a 3 year old, and was staying really positive, but feel a bit shocked today. ... View more

Thanks for the advice, I will check out Asda. A friend bought me loads of secret support tops from Primark this morning, and it works really well - finally I can wear something comfortable, and at £1.50 what a bargain! Thanks everyone, it's the little things that can really help post surgery. ... View more

Thanks Ostrich, that sounds really bad, I hadn't thought about reconstruction, this stage is probably really easy compared with that. I haven't got a clue which size I am at the moment, and don't really want to get re-fitted until I "graduate" to a prosthetic (never know the spelling). Strappy tops might be a good idea once I can move my arm. Might stick to wearing less obvious tops and scarves for a while to avoid too many problems. Will know on Wednesday how the next steps map out anyway when I get my results. ... View more