Breast Cancer Now Forum

Hi Hilsy, many thanks for your reply. I'm so sorry your met is so aggressive and the impact this must have on you, as if having the bloody Cancer is not bad enough, I know we all get to a different "normal" but upsetting all the same. I have not had any seizures, visual disturbance etc, but I guess it's the maybe risk following surgery as well, although it does look like mine is in a good place to operate. I'm in Dublin and a meeting was held yesterday to discuss my case, I so wanted a date yesterday but it didn't happen, I have plans to fly to Florida on the 19th October as part of a Team Ireland dragon boat team, for the international championships. I won't be able to paddle but desperately want to go, I set is as my goal last year when diagnosed with a secondary tumour on liver. Sorry to ramble. I wish you well and hope that even if it does return there are more options for treatment. Thanks again I have a feeling I'll be coming onto BCC site to ask more questions once my treatments is planned. I used the forums constantly (obsessively) with primary diagnosis in 2008, but life moved on, when I got recurrence in 2010, liver mets in 2013 - I didn't feel the need for further support, but now this is a whle new ball game to me, so if you pardon the pun, I'll be coming on to pick brains re recovery etc. Sorry for the steroid induced essay! Thanks again Hilsy, advice much appreciated. Sue x ... View more

I was diagnosed last Friday with a 2.9x2.1cm tumour on my cerebellum, hoping to get surgery next week. I have been encouraged by all the positive posts regarding the op and recovery, many thanks for taking the time to share. My symptoms wee severe headaches, vomiting and dizziness. 30 mins after I was put onto iv steroids all symptoms disappeared and now on oral steroids I remain symptom free. Just wondering about the driving thing, does it depend on how the tumour affected you whether you should drive or not or is it set in stone - brain met, don't drive. Btw some hangover/virus I thought I had! Bit like the gallstones I decided I had last year - no 6.7x4.5cm Liver tumour - now mere pimple on Herceptin and Perjeta. Thanks for listening. Sue xx ... View more

Thought I would join in as I am also getting Pertuzemab, Taxotere and Herceptin. Elliedog think I might have posted on liver mets thread but I don't come on often and cant find it.. I am being treated in Ireland and have to pay for the Pertuzemab, my onc is hoping it will be available "through the system" before the end of the year. I too get a rash on my face which lasts about 5 days but last time the rash was really bad so I have been put on oral antibiotics Minocycline and a cream Rozex and so far this cycle (12 days in) not one spot! Had Ct scan after treatment no 3 and the tumour on my liver had shrunk from 6.7 x 4.5cm to 4.6 x 2.5cm, so heading in the right direction! Just like Elliedog the side effects are minimal, other than the rash some tiredness which is probably the chemo. I hope that the powers that be make Pertuzemab available soon for everybody. I realise that I'm very very lucky that we have some savings to pay for it, but if we don't get it free by next year we won't be able to pay for any more and then it might have been a waste of money! Maybe we should have blown the lot on a holiday instead! To be honest I'm not sure how effective the Perjeta will be if chemo doesn't get rid of the tumour, also some lymph nodes around the liver are also affected. Anyone know the answer? wishing you all the best with treatment. Sue x ... View more

Great, thanks for posting! Love the reply about driving the bus! I was diagnosed with bc in 2008, localised recurrence in 2010 and bc tumour on liver with affected nodes in February this year. I've had my 4th chemo, wear a very realistic wig and to be honest most of the time look the picture of health so get the constant comment "your looking really well" so thanks Dawn for giving me an idea of how to answer! My friend who is a nurse very kindly sent me a thinking of you card, but then spoilt it by putting inside "wishing you a speedy recovery" - wishing a speedy cure might have been more apt! Looking forward to getting more tips on how to reply to the well meaning but insensitive comments! Xxxx ... View more

Hi Geordiex and all the other liver met ladies. well Geordiex I was diagnosed in February with a bc secondary tumour on my liver. Today I am starting on Taxotere and Herceptin with the addition of Perjeta (pertuzemab) just as soon as my onc can get hold of it. i am in Dublin and it hasn't been licenced here yet so will have to pay for it Until its available through the system. So looks like you and I are on exactly the same treatment! Fortunately my bone scan was clear. it would be really great if we could help each other along the way. I'm slightly ahead in treatment so could hopefully give a few tips. if you would like to pm me please feel free. I'm only just getting unused to the web site, used a lot in 2008/09 when original diagnosed, had a wee blip of localised recurrence in 2010, but since the too busy to post. best wishes to everyone and thanks for all the really great information you give yes newbie secondaries. Sue xx ... View more

Oh and just to say Sue have a fab time in Amsterdam, might not be a trip to celebrate 5years cancer free but sure you will have a blast anyway - a bit of R&R before the treatment. Enjoy! Xxxx ... View more

Hi Sue and other ladies, Im also Sue and was originally diagnosed in 2008. Had a localised recurrence in 2010 (mastectomy & recon), now joining you with secondary breast cancer - tumour on liver. I'm starting Taxotere and Herceptin tomorrow and will be introducing pertuzemab once my oncologist gets hold of it as it is not yet licenced here in Ireland and so we will have to pay for it until we can get it through the "system". By the way, live in Ireland since 2011, lived in Scotland for 25 years but originally from North Wales! like you Sue would love to hear the encouraging stories from other secondary ladies. Have taken steroids and sleeping tablet so off to bed! wishing you Sue and all she other lovely ladies many years of successful treatment. sue xx ... View more

Hi Marian, I had a portacath for my chemo and herceptin. I had it taken out last year under sedation and I felt nothing at all. Regards Sue ... View more

Keeping my finger's crossed for your results today. x ... View more

To be quite honest - putting "I hope this helps" at the end of saying "There is also some evidence that patients with breast implants are more likely to develop some kind of cancers (e.g. brain, lung). Well actually NO it does not help!! I have a LD reconstruction with an implant - I did not have enough of a tummy to have anything other than this. I'm not a worrier and so will take the comment with a pinch of salt - but you may certainly have given other ladies something to worry about! ... View more

So glad you have managed to get a box. I am also on Femara/Letrozole, my next prescription is due end of June so I might just pop into the chemist and ask if they have been having problems. I had a recurrance after two years and my Onc decided that the Tamoxifen hadn't worked, so had a BSO and now on Femara - so I think its quite important that I get my supply! Don't want to scare anyone on Tamoxifen that they are going to get a recurrance - it took 3 ops before I got clear margins so there is a possibility that there was a cancer cell just hanging around till the chemo, rads and herceptin had finished! Sue ... View more

Go for it! I went on holiday to Spain a week after finishing rads, previous to that I'd had five months of chemotherapy. You can get total sunblock on prescription from you GP - I did and put it on my affected breast, just used my usual sunblock everywhere else. xx ... View more

I think it is better to buy your wig before you loose your hair as the shop can match style and colour to your own. I did buy a wig but never wore it - used buffs instead. I think it will depend on how you feel about hair loss - I wasn't bothered as it is temporary and as it was winter got away with wearing beanies as well. One thing I would recommend is having your hair cut really short (I had a number 4 shave) because when the hair does start to come out I think it is less traumatic if it is short. I wish you all the best with your treatment. xxxx ... View more

Hi Femara ladies Can I please join in, have read the posts with interest as I started Femara one week ago - so far so good with no obvious side effects - probably too soon to tell. I was taken off Tamoxifen in October 2010 when my BC diagnosed in 2008 recurred - Onc decided that Tamoxifen had not worked (glad he thinks 5 lumpectomies, Chemo, rads and Herceptin did lol!). I had a mx and recon 10 weeks ago. Hi Val - long time no see - hope to see you soon, glad to hear that all was well with MRI scan and hope all goes well with your appt this month. Sue xxx ... View more

Hi Debbie and all you other lovely ladies, I had a mx and LD recon 10 weeks ago and I'm delighted with the results, so much so that I have been showing it off to anyone with a vague interest - even my 22 and 23 year old sons have been subjected to a "viewing" and they were impressed. Cut a long story short, I was diagnosed in 2008 and had lumpectomy and two more ops for clear margins. Then in 2010 had a "tidy up" op and they found there was a recurrence in same place so another lumpectomy. Then it was decided that I should have a mx. My op took 7 hours and with help from two nurses I was sitting in a chair the next day having breakfast! I should have got home day 3 but developed an inflammation and rash down my back so had to be put on iv antibiotics. I can honestly say that I had virtually no pain, I was hooked onto a morphine drip that you press a button when you need it - I only pressed it twice so they took it off me. I did have paracetamol and I think co-codamol, but when I got home on day 5 didn't take anything. Like the other ladies say its important to do the physio - personally I didn't have any problems with arm movement and also I didn't have any drains. I wish you well with the op - do take it easy though when you get out - even if you are feeling great its important not to lift or pull with the affected side. I have been putting Bio-oil on the scars and they look amazing after just 10 weeks - so although expensive well worth the money. Oh and I got post surgery bras from Matalan for £6.00 - get a size bigger than you usually take (ie 36 instead of 34 but cup size same) and I also used an expander, you will have to fasten in the front and then twist round. Can I also say how brave you ladies are - I was too much of a woose to have a mx straight away. Sue xxx ... View more

Sharon, the girl with the beautiful smile, so sorry that you were taken far too soon. My thoughts are with your family at this sad time. Rest in peace. Love Sue xx ... View more

Hi, I used Nioxin - I think it was called root boost - Im not at home at the moment so will check when I'm back at the weekend. I rubbed it into my bald head every day, I had also been told to brush your bald head with a baby brush to remove any dead skin and keep the folicles open. My hair came back thicker than it was before. On my hairdressers advice, I did shave the first regrowth which was fluffy and grey - its quite hard to do this as after being bald for months you just want to hang onto it! I don't know if it was the Nioxin or if my hair would have grown back as thick without it but I would certainly give it a go. Hope this helps. xxx ... View more

Hi Penny & Cathy - that's me joined the mx ladies! I had my op last Saturday all was well until Monday evening when the nurses noticed that all down one side of my back (ld flap side) was red and inflammed so I was started on oral antibiotics then iv antibiotics when my plastic surgeon saw it. I'm back on oral now and he is keeping an eye on me just incase it doesn't improve and they have to take the implant out for things to settle down. I'm soooo pleased with the results - the top half looks exactly like it did before! Havent seen the scar yet and I know there will be a dent where I had so much scar tissue. The hardest thing is trying to remember not to lift, push and pull with my right hand. I hope you ladies are feeling better by the day - we should give ourselves a pat on the back - good side of course!! Take care, Sue xxx ... View more

DGW as Dot said, it was great to meet you today and hopefully we didn't put you off coming along to our next lunch!! x ... View more

Next date is tomorrow, 22nd January, 1.30pm Vittorios on the Bridge, Edinburgh. New ladies very welcome to join our wee group. ... View more