Breast Cancer Now Forum

Hi flower......that's the spirit 🙂   Predict is a mathematical model intended to help oncologists determine and recommend the best course of treatment.  Without wanting to make you wobble(!!!!) the MATHS on the tool suggests:   If a 45 year old discovers a 30mm grade 3 lump that is ER/HER2 positive, has 4 positive lymph nodes removed and they have NO treatment (other than WLE or mastectomy), the stats say that 23 people are likely to be alive after 10 years.  However if they have ALL recommended treatment i.e. chemo (e.g. FEC-T), hormone treatment (e.g. Tamoxifen) and targeted biological therapy (e.g. Herceptin) then a further 43 people (66 in total) are alive at the end of 10 years.   Does that make sense?     Anyways.....pop that insensitive oncologist remark back where it where belongs 'in the delete/recycle bin'.....onwards and upwards my lovely......and listen to your Mum hehe x ... View more

Hi again....as many others have said the prediction is based on data collected from thousands of women up to 10 years previously.  It is best interpreted as xx people of a similar age with a similar diagnosis are alive 10 years later, whereas this doubles when people take advantage of the whole range of treatment available to them. It is only a general guide to possible outcomes, and I seem to remember reading somewhere that the % who didn't survive were not necessarily due to bc.   Treatments have moved on even in the nearly 5 years since my diagnosis, and research is moving on apace. I'm not sure that was a very helpful thing for your Oncologist to tell you, as it was bound to make you worry.  My Onc didn't ever mention stats, only said she was committed to giving me the best possible treatment to prevent a recurrence!   Hope that helps a little.....hugs x ... View more

Hi Flower2016.....predict is just what it says 'a prediction based on people of a similar age with a similar diagnosis' based on historical data....that's how it 'predicts'.  Easy to say but not so easy to do, please don't get hung up on statistics. In my profession we say there are 'lies, da**ed lies and statistics'. Although it can be a helpful tool in deciding treatment options and likely benefits. You will see on the forum many people who have similar diagnoses with different outcomes.  My colleague had an almost identical diagnosis to me nearly 5 years ago...she chose not to have chemo, I did and we are both still here, happy and healthy, to tell the tale, although predict gave her a much poorer prognosis than me.  Although difficult, please try to live in the moment....use your energy to deal with chemo and resist worrying about the future, which you can't accurately predict. I have learnt mindfulness, use complementary therapies such as Reiki since diagnosis and only allow myself a maximum '10 minute worry window' every day where I can think about the 'what ifs'. Then I get back to, and on with life.   All the best for the rest of your treatment.....be gentle on yourself.....take care xo ... View more

Hi Angie......I think it differs for many reasons.  In my area (south coast) it's Oncologist (chemo and hormone therapy) for 2 years; radiotherapy 1 year; surgeon 5 years and mammograms 10 years, although I do believe it is 'individualised'!!  Probably lots of variations nationally.....x     ... View more

Hi chilik......can empthasise with you and I have discovered that most people just really don't know what to say, and are probably tryng to show care and concern for you.  There is quite an interesting thread somewhere on here about 'the things people say'.   Not sure if you have ever seen this article http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf if not then it is an interesting read that I still dip in and out of over 4 years post diagnosis.  Page 19 has a section about returning to work. Hope that helps a little.....take care M x     ... View more

Hi Tina......each infusion of TAX stops nail growth, so there is the potential for your nails to lift from the nail bed. Kept mine short, well moisturised and unpainted for several reasons.  1) no evidence to prove that painting dark colours works, other than to mask discolouration and possible infection 2) removing nail polish, especially dark colour, can impact on nail condition of already fragile nails 3) if you're going to lose your nails, it's going to happen, regardless of what you do!   I have read that if you immerse your nails in iced water during infusion that may help.....didn't try that nearly 4 years ago when I had my treatment though!  Some of my nails lifted, felt sore, broke, fell off....a couple up to three times.....however within 4/5 months of finishing chemo, they were long and strong again.  Lost a couple of toenails as well, sadly those haven't recovered so well :(. Still just kept nails well moisturised and used a dressing on the odd occasions nails hurt.   Hope that helps a little....hope the rest of your treatment is kind to you and your nails don't suffer too much. X   Found this on another thread which is interesting......   My cousin, a Consultant Dermatologist, offers this advice "You may notice nail discolouration (particularly on taxanes) as the nail root cells are killed by the chemotherapy. These dead cells push out as new cells are produced, leaving the discolouration. The effect of chemotherapy affects keratin production, the protein that gives nails their strength and rigidity, which can cause brittle nails. sometimes the nail may separate from the nail bed. There is growing evidence that wearing 'ice gloves' or immersing finger tips in iced water during infusion may help to limit damage, as the chemotherapy is the most 'toxic' to cells during administration." Not sure if ice gloves are available in the UK; however you could ask to immerse your fingers in iced water at the start of treatment? Maybe worth investigating?   ... View more

Hi......this article may be of some help?  I still dip into it when I get wobbly......like now when 4th year post diagnosis follow up mammo and surgeon appt due! Xx   http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf ... View more

Hi tat4tit.....I had 33 rads in 2012 following WLE and sentinel node removal and 6 x FEC-T.  Reason given was that tumour was on the large side (2.7cm) for a WLE, and the clear margin was <1mm.  25 was recommended for me, along with a further 4 (boosters, but not strictly rads - can't remember name), however as tumour was so close to chest wall they changed to a further 8 deep rads!  My skin did suffer a lot, not everyone's does, and it is still very thin under breast, which has not yet returned to 'normal'!!!!  Used lots of aqueous cream, bathed skin with warm, salted water (after rads had finished), wore a cotton support vest top, and some prescribed cream when skin got a bit infected.  Found it quite useful to wear a soft 'burns dressing' underneath where worst effects were. A cold fan was a lifesaver!  All cleared up after 3 months, as apparently rads keep on working for a while.  My ribs have been a bit affected, and I get a sort of stretchy rib pain sometimes..... consultant says this can take up to 7 years to disappear......deep joy!  The positive is that WLE + rads is a very effective treatment.   Hope that helps a little, and all the best for the rest of your treatment.....hope it is kind to you.  Usual mantra is ask for what you need.....xx ... View more

Hi Thelou.....pleased for you that your treatment has finished....at such a young age.....hope you are doing well?  My understanding is that cells can break away from the tumour and move into the lymphatic system or bloodstream.  Your surgeon or oncologist should have told you if you had 'vascular invasion'.  Sure you can double check by asking for your pathology report to be looked at.   It is very natural and actually OK to feel as you do.....it takes time to regain the balance in your life and to trust in your body again....I have learnt to think of it as acceptance, adapatability and reassessment of my life.....allowing myself just ten minutes a day to worry about the future...although 4 years post diagnosis, I rarely need those 10 minutes on most days 🙂     Hope you get the reassurance you need.......take care.....x ... View more

Hi Nannalou....it is torturous waiting for results, and I don't think it gets any better with time.....those two weeks feel like an eternity, and all sorts of scenarios can run through your mind!   We need to accept that worrrying is OK, and part of our natural survival mechanism.  It is easy to blow our fears out of proportion, so it's important to put our worries back into perspective....easier said than done, I know.   One tip I try is to only allow myself a max 10 minute 'worry window' each day, where I can think about the 'future me'. Outside of this 'window' worries are only about the 'present me'!  Does that make sense?   Hope your results letter arrives soon 😃 ......take care, J x ... View more

Hi Rob em....I finished FEC-T over 3 years ago, and worked all through chemo (some say I was stupid....for me it retained control and sanity!!!). Suffered lots of side effects...all manageable with medication, and I only took the chemo day, plus a few 'nadir' days off. Often on forums you will find the 'horror' stories, as people ask questions about their treatment and side effects that sometimes their medical teams are not great at answering! Mine were a bit rubbish, so although I never actually posted during treatment, I did read lots and learnt some useful tips. Best one was to keep a comprehensive diary, with medication (so you never forget) side-effects (so you know what to expect) and to plan little treats 🙂 For me the worst side effects were the loss of taste so I just ate what I fancied and what would slip down easily!  Plus the cumulative woolly headedness and tiredness.....I got so slow by the end of treatment I was walking around school like a 90 year old!  However, amongst all this I was putting the finishing touches to my daughter's wedding, and the week after her wedding and the end of RT went on a 10 day walking (very slowly to start with haha) holiday.....!   I do practise mindfulness, which was very helpful during treatment....kind of living in the moment, being really aware (if a little fuzzy headed at times!) of what was going on, putting the past where it belonged and trying very hard not to worry about the future.   I hope that the treatment is kind to you and the side effects are manageable.......you take care, J x         ... View more

Hi Wiffle......my heart goes out to you. The pain of first TAX can be horrendous......however it should improve for the final two rounds.  You are right that you should adhere to the maximum dosage of paracetamol and ibuprofen over 24 hours.  You could exchange paracetamol for co-codamol, or ask your medical team for something stronger, i.e. tramadol......however that might 'space' you out and with two boys to care for that might not be too helpful for you. Is there anyone who can help with your boys?     I know it's really hard, and if you can try and stick with the treatment.  If you talk to your Onc before next infusion, they might be able to suggest something to help i.e. perhaps a return to FEC, weekly TAXOL, reduced dose, more saline flushing between each TAX infusion or different approach with steroids?   We are more resilient than we think, and hopefully the impact of side effects will lessen.  For many the pain and some side effects do subside, however the tiredness can be cumulative. It is so difficult to offer any advice on how to deal with the side effects other than pankillers (try taking them starting day before TAX next time), warm 'radox' baths, heat wrap (microwave), hot water bottle, mouthwash, lots of pineapple in all guises, jellies, ice cream, crumbly mints, flavoured drinks, manuka honey tea etc. etc. If you can, try and keep a diary for medication, side effects etc. and include how you're feeling.....plan little treats.   I wish I could wrap a cloak around you to take away the pain (over 3 years on I can still recall it)......hang in there.......hope you feel more positive over the next few days, and that future treatment is kinder to you 🙂   You take care x     ... View more

Oh Curlykaren......that's not good :(. TAX is rubbish indeed (even if it is very effective) on your body.  I do feel for you.....virtual hug 🙂  Worth mentioning when you have final TAX as they may be able to reduce dosage slightly, or what worked for me for last dose as I was pretty spaced by then(!) was to have a saline flush between each 'bag' of TAX (had an electronic IV pump) which lessened the impact and after effects.   Really hope things improve for you soon x   Piglet.......numbness in fingers and toes (peripheral neuropathy) is a side effect of TAX.  Mostly it should be temporary; however it can be more long-term.  I finished FEC-T over 3 years ago and still have a little numbness in some toes and a few finger tips......much improved, albeit alowly, over time.  Worth mentioning to your Onc to see whay they say.  Take care J x     ... View more

Hiya......quick check in!  Just wondered how you're doing?  Pain eased at all?  Better sleep?  Take care x ... View more

Hiya.....just a quickie....2nd day back after half-term and exhausted!!!! One week off in a 15 week term is not enough  😞   You can take co-codamol instead of paracetamol and alongside ibuprofen.....they spaced me out too, which was probably a good thing hehehe.   Best wishes to all......x ... View more

Hiya......that's really great news from your surgeon. Glad someone in your team is brilliant and that she is trying to arrange a second oncology opinion.....hopefully you will get some clarity which will put your mind at rest.   Hang on in there....you really do start to feel much better around 3 weeks after last chemo as your body starts to recover 🙂   Not a teacher......Community Manager, so I develop all the community links, and bids for funding etc. Thankfully as I don't have much day to day contact with the young people, my Onc allowed me to work through chemo, although I did get VERY slow 😞 Upside was that staff looked after me buying me treats when they went to the shop and the MacDonalds ice creams were a great relief for my sore mouth :). There is something so special working in school, so I bet you can't wait to get back....please make sure you're really well enough though.....!!   Hope the rest of the week is kind to you.....x         ... View more

Hi Boodles...think most of us feel/felt like that at the end of treatment.....have a look at this article, quite long but worth a read to see that it's OK to feel like this and maybe help to put your feelings in perspective.   http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%20What.pdf   Do you have a MacMillan or similar attached to your hospital...can they offer some complementary therapies or counselling if that would be helpful?  Otherwise, if you can, share your feelings with the person in your team, Onc, GP, BCN who you trust and respect the most.  The BCC helpline is also fab...they are very good at listening 🙂   if it helps, the way my Surgeon and Onc deacribed the treatment, was that the operation removed the cancer, the chemo is systemic to remove any sneaky cells that may be lurking, and the radiotherapy is local to treat the area around the surgery.    You take care and try to access the help that you need......J x         ... View more

Hiya.....how are you doing?  Tis a long journey indeed, but one we can deal with and then live with 🙂 My diagnosis was different to yours...had a WLE (lumpectomy) and no nodes affected. Radiotherapy (RT) for me was automatic!   Ouch to the foot cannula...they did threaten me with that as they said I didn't have good enough veins to cannulate (hence the PICC bullying), but the ward nurses, when I was admitted once, had no problem!   RT usually starts around 5-6 weeks after last chemo.  You should have a planning session, where they stick you in a 'donut' and look at the area like a cucumber....well that's how it was explained to me!!!  Hopefully that department  may be more efficient, and you should have a radiologist oversee your treatment, rather than an oncologist....you can live in hope 🙂  They should explain to you what is being radiated.....area around scar, nodes etc, and the worst case scenario side effects, which can include rib, heart and lung damage!  However, the beams are SO precise...marked by fetching little black tattoo dots....that they will do everything they can to minimise that risk.  The actual procedure is quite quick....longest bits as usual the waiting, and the shifting you around to get you in the right position. I got royally cheesed off by looking at the cherry blossom on the ceiling, so I asked them to change it every few days (had 23 rads) as I'm sure I wasn't the only one! They also only had one CD playing naff music, so I treated the department to a few more relaxing discs once treatment had finished!   Main side effect for me (not for everyone) was  very sore and peeling skin...let air get to it as much as possible and use whatever cream they recommend...usually aqueous cream, which you can also use in shower. They should review you throughout and can prescribe special gels or pads that will help if your skin is sore.  Some people say they get very tired...I didn't but maybe because hospital is very close, and my daughter got married in the middle of RT so she didn't give me time to be tired hehe.     After effects were areas of very thickened skin (softening now), some very thin skin and quite a bit of tissue damage, which is sometimes uncomfortable.  My lovely surgeon said this could flare up for around 7 years...deep joy!!!   Hope some of this helps to reassure.....just re-read one of your original posts, and see that you only have one TAX to go.....yay 🙂   Hope you have a better week.....back to school for me tomorrow - one week off in a term of 15 weeks is not good.   Look after yourself x   ... View more

Hiya.......the headaches/other localised aches and pains are a good sign after the injections as it means they are working - your bone marrow is producing the immune cells your body needs.  I went from a 12 paracetamol a year gal to 300 over 12 weeks!!!  From my own experience, the 2nd and 3rd doses were kinder pain wise, as I knew what to expect and could pre-empt....plus my body was getting used to it!  Some of the other side effects also improved; however the tiredness and fuzzy headedness got worse 😞 I was one of those bonkers people who worked through chemo!  Docetaxol apparently weakens the immune system more than FEC, so be careful about what you eat (pregnancy type diet), and getting cuts/grazes....drink loads and loads too to keep your kidneys flushed through and help to avoid water infections.  May have said previously to keep your mouth scrupulously clean to prevent mouth ulcers and oral thrush.  Try and keep away from people who have viruses...although my Onc said that you're more at risk of infection from yourself than others!   How irritating that your chemo unit are a bit rubbish.....mine were OK, although they did try to 'force' me to have things I didn't want like a picc line.  Always come on here and ask, there will usually be someone who can help you out.....the helpline are also fab.   I am pretty good, thanks 🙂 still very thin hair, few eyebrows, general aches and pains from Anastrozole, and some scar tissue/rib damage from radiotherapy but generally life is good.  I very much live in the here and now and enjoy every day.....As my name says 'same old me'!!!!!   You take care.....hope you feel more like you for the rest of the weekend.....onwards and upwards.  You will get through this   🙂 x   ... View more

Hi curlykaren....my Onc (over 3 years ago) advised to take max doses of paracetamol and ibuprofen over the day from day 2 post TAX until around day 5 or 6 to help mitigate the pain, which can feel like you've done 10 rounds with a champion boxer!!!!  This apparently turns off the pain receptors in your brain.  Pain from TAX is usually worse after first infusion, as your body has learned to 'tolerate' FEC, and then gets assaulted by another powerful drug....which has shown to be very effective.   Remember to take your temperature pre-paracetamol to ensure it's not raised, which can indicate an infection. I found it helpful to keep a TAX diary so I knew what to expect!     Some of the more common side effects include sore/swollen hands/feet, nose bleeds, diarrhoea, oral thrush and almost complete loss of taste.  You may suffer from all, some or none of these....no-one can predict. Take good care of your hands and nails, which can be particularly affected....keep your nails short and hands well moisturised.     Hope the treatment is kind to you......two to go 🙂 Take care x     ... View more