Breast Cancer Now Forum

Hi Claire2s.....this may be of some help?  Long read, but even now nearly 4 years from diagnosis, I still dip in and out    http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf?openElement   You take care M x ... View more

Hi Dudders......interestingly similar diagnosis to me, although both my Surgeon (an eminent bc researcher) and my Oncologist agreed that chemo would be recommended.  Grade 3,  2.9cm tumour, removed by WLE, no lymph node spread, and ER+3.  They were of the opinion (American research apparently) that any ER+ > 0 is positive!!  Although to be on the 'safe side' prescribed FEC-T rather than FEC.  Take Anastrozole (aromatase inhibitor) for ER+.  Surgeon was very clear that at the time bc diagnosis was a bit of a 'lottery' as other than having breasts, I had no other risk factors! They both also were in agreement that the surgery removes the tumour, and all the follow up treatment is 'belt and braces'....chemo for systemic treatment in case any stray miniscule cells have escaped, RT to 'cleanse' the area around the tumour and AI to help prevent risk of recurrence.  They also said that all the data is (as it has to be by its nature) up to 5 years out of date, and that survival stats are improving all the time; however there is no 'rule' that determines the future, hence why they use the terminology ' no worrying features' or 'no evidence of disease'.   So far so good, although every hospital appointment since end of radiotherapy has caused the stomach churning feeling!!!  All the treatment has caused 'issues'....still have some scar tissue from op which feels uncomfortable at times and affected breast is quite mis-shapen, ribs ache from RT and Anastrozole causes joint pain, ridiculous hot flushes, dry mouth and general feeling of being 90 at times.......HOWEVER I am loving life, still working (plan to retire early in 2 years at 61) and actually doing pretty much everything I was before diagnosis...just a bit slower hehehe.  Am a naturally optimistic person by nature (drives my husband nuts!) and just get on with whatever life throws at me....learnt at a very young age that worry gets you nowhere, just like a rocking chair!!!   I would probably say that the most important things to get you through chemo if you do decide to go that route is 1) keep a diary so that you can record medication, side effects, feelings and plan treats 2) don't suffer ANY side effects in silence, always ask your team for what you need 3) do what you need to retain control of your life 4) accept all offers of genuine help especially from those closest to you.   You look after yourself....M x ... View more

Hi Dudders.......I am 3 years post FEC-T chemo, and although I coped well throughout with the usual side effects - even carried on working in a school for sanity!! - the reality now (for me, as everyone is affected differently) includes:   I was a fit and healthy 55 year old beforehand.....now I still exercise (completed the race for life 2 years ago) but get more tired easily and don't have the same stamina.  This may be general ageing, however feels quite extreme for just 3 years!   Hair is very, very fine and thin (was thick and curly) eyebrows still pretty much non-existent, eyelashes very sparse....although I do take Anastrozole which can impact on hair re-growth.   Lost quite a few finger and toe nails immediately post-chemo, even though I took really good care of them. It's the T (docetaxol) that stops growth at each infusion.  Nails are still quite brittle and flaky, splitting more easily.   Had peripheral neuropathy in feet and fingers.....one foot is almost totally recovered.....other is still not quite there....fingers can be quite temperamental!   Chemo brain (is real according to a recent Canadian study) is the worst long-term effect for me, and very frustrating....it is quite specific and different to general age-related memory issues!  I find it very difficult to concentrate...reading is no longer so  enjoyable.....struggle with finding the right words, remembering where things are, multi-tasking, paying attention, mind-wandering, remembering names, organising thoughts and learning new tasks....all things I was really, really good at pre-chemo.   I have recently taken part in a University PhD study on this subject, so results will be interesting.  Short-term, the activities did improve my cognition and concentration, however this has not been totally sustained!    I hope that helps in some small way......at the end of the day treatment decisions are down to you, and you need to be at peace with whatever you decide to do.  Cannot stress enough that my experience will not be everyone's experience....very sensible to ask about longer term effects now, as during treatment your rational, thinking head does go awry and you are living 'in the moment' rather than necessarily thinking longer term.   I wish you well whatever you decide....take care M x                     ... View more

Hi Jen2_.... You will be able to renew your prescription exemption for cancer drugs for a further 5 years, and should get a reminder from the NHS.  My exemption cert expires after my 60th birthday, when I will be eligible for free prescriptions anyway 🙂 hope that helps, M x ... View more

Hi vic55....I worked all through chemo 6 x FEC-T 3 years ago.....in a school too (not directly with children though). Looking back it was quite tough, I got quite slow and tired, however for me to keep a modicum of control over my life and in touch with normality/reality, work was the best thing I could have done! Not sure I would have coped with dwelling on everything through a prolonged absence or a phased return. I would take the day and next day or so of chemo off, then the 'nadir' low blood count days (7-10 for FEC and 4-7 for TAX...I think) and as some of these fell over a weekend, I only took 4 out of 18 weeks off. Was hospitalised following 1st TAX with an unknown infection....Onc said you are more at risk from yourself i.e. what you eat, cuts, grazes, urinary and chest infections than from others. Aches and pains from TAX were sometimes an issue, although taking painkillers from day 2 helped. My school was very supportive, on occasion I had a late start/early finish and everytime staff went to the shop or MacDonalds they brought me back a treat of ice cream, fruit pastilles, honey or flavoured water....got qute spoilt actually. Never wore a wig (not after it blew off in Morrisons car park!) just chemo beanies and straw hats. See how you go, listen to your body and do what feels right for you.......all the best x ... View more

Hi costagirl.....I had that too, nearly 3 years ago, and got 'accused' of being out in the sun without sunscreen!!!! It turned out to be a reaction to the steroids and diminished after a few days. I tried lots of thngs the hospital prescribed; however my husband bought some good old calamine lotion which took the burn out of it.....you will imagine how attractive that looked?! Hope that helps......if in doubt or anxious, please ask a member of your team.....good luck x ... View more

Hi Delphinium....as Ash66 says try alternating paracetamol and ibuprofen, but remeber to take your temp before taking para. My treatment finished nearly 3 years ago and the switch from FEC to TAX hit me like a truck! After the event, my Onc said the first TAX after FEC is usually the worst as your body needs to accommodate a different treatment when it was just getting over the first....why she didn't tell me before I really don't know. TAX is a really effective treatment and plant based (yew tree) which is what kept me going. A warm bath with good old Radox crystals may help, or one of those wheat bags, you heat up in the microwave, applied where the pain is worse. For your next TAX start taking painkillers the day after infusion for 5 to 6 days as this should help to mitigate the pain as it turns off the receptors in your brain. If you need stronger painkillers, please ask. From a 12 tablets a year oerson, I took over 300 painkillers in 9 weeks!!! You may also have the 'white blood cell injections' as TAX can cause your immune system to be less effective. These, too, can cause aches, usually around the neck and shoulders ....HOWEVER this is a good thing as it means they are working and stimulating your white blood cells 🙂 I think most find that the worst aches/pains are over in a few days, and do lessen as your body gets used to TAX. The pins and needles may be peripheral neuropathy (PN) again caused by the TAX. I found soaking my feet helped, along with keeping them well moisturised - massage is good - and raised where I could. Please mention this to your Onc if it continues as I didn't and still have a level of PN nearly 3 years later 😞 I hope that your discomfort eases soon......all the best with the rest of your treatment....take care x ... View more

Hi katyrootoo.........can't help you specifically with the return to work, as I chose (Onc thought I was barmy, but supportive) to work in a school all through treatment (with chemo and nadir days off), WLE, FEC-T and 23 rads. On a personal level I felt I needed this level of 'normality', as I didn't think I would cope well with several months off and a phased return to work. After treatment had finished during the summer holidays, I felt that sense of 'loss' almost as no hospital visits planned for months! Also wasn't sure if when I went back to school in Sept, staff would expect me to have miraculously 'recovered'.......luckily they did not! The article below, a bit long, but brilliant, is well worth a read as it helps to put all our feelings in perspective i.e. it's OK to feel like this and it will take time for our physical, mental and emotional wellbeing to heal. It does get better, I promise..three years out for me and life is great....does take time though, small steps, sometimes one forward and two back....hope this helps a little.....you take care x http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf?openElement ... View more

Hi ST1....here is the link to the article mentioned.....long, but well worth a read... http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf?openElement As everyone else says......small steps....breathe.....plan something to look forward to.....it will get better, I promise 🙂 3 years out for me and life is great....take care x ... View more

Hi Lottie....and I thought it was just me (or simply me getting older!!). Finished chemo in July 2012 and my memory, concentration etc. seems to be getting worse. I can write a perfectly good 'strategic' document, but sometimes can't string a sentence together :(. Thought it was the Anastrozole; however a small Canadian study has shown, just this week, that chemo brain does exist! The characteristics are exactly what I'm experiencing! Here's the link if it is of any use http://www.breastcancer.org/research-news/researchers-say-chemo-brain-is-real ... View more

Hi Hay123......I am so pleased you went to the breast clinic. If your surgeon says it's nothing sinister, then it most likely isn't; however good to have an ultrasound for total peace of mind 🙂 let us know how you get on. Take care M x ... View more

Hi Molliana....as a perpetual asker of questions, particularly when it came to chemo treatment, I asked my Onc for an explanation of her rationale for my course of treatment FEC75 + T (docetaxol). She explained (I wrote it down!!) that standard treatment for early breast cancer was FEC100...and FEC75 for less fit/lower risk patients. For FEC75 the F part is higher; E part (the most toxic?) lower and C part higher. I was considered 'low risk' as node-negative, however as only ER+3 she prescribed T as a 'belt and braces' approach as 'close' to triple negative. Hope that helps in some way....such a shame you have no faith in your Onc.....mine was amazing. Have to say it seems weird going back and reading my diary of 2011/12 as it feels like a lifetime ago......:). All the best for the rest of your treatment.....hope it is kind to you....take care M x ... View more

Hi....if you keep an eye on your temperature, especially just before you take any medication for your cold that would be safest. If you are at all concerned, I would ring your emergency number for advice. I had very low neuts and high temperature and was admitted for a few days for IV antibiotics.....I seem to remember (over 3 years out now) that it is more about infection than virus, which a cold is, and that you're more at risk from yourself, i.e. cuts, grazes, urine, chest or throat infections or unhygienic food than colds etc. never did find the cause....I just felt like I had proper flu! Hope that helps a little, and that you feel better really soon...a cold is horrible at the best of times 😞 My only bit of advice is.....if in doubt, ask as nobody will mind and you will feel better for asking. Take care M x ... View more

Hi Hay123......I am over 3 years post diagnosis and at the end of last year had a pale pink, non-itchy, not hot rash on 'good' side. As I had routine surgeon appt ar the time, the senior nurse looked at it, didn't know what it was, said don't put anything on it and watch and wait. Went back 3 weeks later; rash was still there, but fading. Was told again to watch and wait, go back in 3 months. If still there they would biopsy, and if it got worse, go back straight away. Well, it faded slowly and had gone after the 3 months. Went back and all fine. She did say it could possibly be an auto immune reaction to a bruise, as I mentioned I had bruised my breast and had also had something similar on my upper arm a few months previously. She said she'd heard about this, and it was quite rare.....possibly connected to chemo.....!!! I would say, please get it checked out for your own peace of mind. Our medical professionals are there for us, and I am sure never feel bothered by any concerns we may have. Hope you get it sorted soon.....take care M x ... View more

That's brilliant news Marie.....and breathe 🙂 take care M x ... View more

Hi Mazz.....whatever the outcome, at least you will know one way or the other. Don't think BCNs are 'allowed' to tell you biopsy results over the phone as the results and any proposed treatment - sometimes offered for fibroadenoma, or a 'watch and wait' - will have been discussed by a multi-disciplinary team. Sending you a virtual hand hold....take care M x ... View more

Hi Lazydaisy....what a lovely thought. Like others, I just went for comfort during chemo cos it does get boring sitting there for hours! Only slight word of caution is that post chemo (3 years ago) I couldn't bear to wear, smell or eat anything that remotely reminded me of chemo, so chucked loads of things away....and took a while to return to favourite food/drink! On the days I didn't work it was lovely to 'lounge' around in soft, comfy 'lounge' trousers and pretty lacy tops as with no hair, eyebrows or eyelashes, plus dodgy nails it was lovely to feel a bit feminine! A pamper basket would be a good idea....body moisturiser, bath soak and shower gel, hand/foot cream with the little cotton gloves/socks for extra overnight moisturisation, clear nail varnish/nail strengthener, pretty scarves or chemo hats (wigs get hot and itchy in summer), candles, 70% cocoa chocolate, crumbly mints, fizzzy elderflower....little treats you know your daughter will like. I have to say the thoughtfulness of my Mum, husband, son and daughter got me through treatment and out the other side....turning up with little posies of flowers, flowers in pots for the garden, bags of jelly babies, liquorice allsorts and interesting fizzy drinks! All the very best for her treatment......and to you as her lovely Mum...x ... View more

Love your husband descriptions Katt 🙂 Mine is weirdly a combination of A and B. We have to remember that this is just as scary a time for them....after all the person that they love is behaving out of character faced with their current situation and they can't do right for doing wrong! I had several meltdowns and not sure he knew how to handle a whirling dervish in the lounge with a towel over my head....yes really!!!! Just to raise a smile on this Easter Sunday....I call my husband of nearly 38 years (known him for over 40) my 'first' husband just to keep him on his toes...he loves it really:) On my office noticeboard in school (many challenging situations - children and staff hehehe) I have the following strategies for 'calming down' and use them quite often!! Also use it with the children (all have special needs) and get them to take their pulse before and after.....it's amazing to see how well it works. Tell yourself to STOP (I do actually point a finger at myself and give myself a good talking to!) Give your brain thinking time Tell yourself you can handle this Say to yourself....be calm.....be calm.....be calm Walk away Count backwards from 10, 20 or even 100!! Tell someone else how you feel Breathe deeply four or five times Tense and relax your muscles Take a little exercise (lifting a glass doesn't count) Go somewhere and shout Picture yourself dealing with the situation calmly and strongly If nothing else, hopes this makes you smile imagining me doing this several times a week!!! I do actually LOVE my job 🙂 xx ... View more

Hi.....Erinna - you could try taking ginger root capsules from health food shop or wearing an anti travel sickness band which might help. Taking it in the evening works well for me. As others have said, the different brands tend to cause different side effects for different people. I tolerate TEVA quite well (on it for nearly 3 years) and ACCORD very much less so (had it for two months - horrendous for me!). Trial and error...good luck 🙂 MrsGoggins......I started taking Anastrozole 2 weeks post RT as recommended by my Onc to give my battered body a break! Would certainly concur that dealing with all things bc as they occur is a pretty good plan. Found it helpful to keep notes in a diary throughout treatment three years ago, which was useful when Anastrozole brand changed. Couldn't believe the different brand could have such an impact. Seem to remember pharmacist said active ingredient is miniscule...it's what they pack it out with that causes the side effects...one step at a time 🙂 ... View more

Hi Mazz....same as kittkatt, have everything crossed for you :). From what I have researched, read, absorbed and learnt over the past three years, unless whatever is presenting in a breast can be aspirated (and fluid drawn out) which confirms a cyst, then breast services will almost always carry out a biopsy to confirm,deny, reassure and generally be on the safe side. If you hadn't had the biopsy you would be forever wondering 'what if..' I guess; I know I would! The sneaky nature of bc is that it can (rarely) hide behind something that presents on an image as non-sinister. Please try not to generally google; use trusted sites like this one, cancer research and macmillan which are genuine. There is some scary, out of date stuff out there. We are here to virtually 'hold your hand'....please keep in touch and do let us know how you get on.... Take care M x ... View more