Breast Cancer Care Forum

Jenanne I have pm'd you. Pamx ... View more

Laura I have messaged you! Pam ... View more

Horsie...just noticed your comments about SIRT on the liver mets thread. I had a theotetical discuusion with my onc in Velindre re SIRT should the need arrise and was assured it was available in Velindre. Pamx ... View more

Hi all. I live between Cardiff and Newport and have bone secondaries (for the last 21/2 years) which were diagbosed 5years to the week after primary diagnosis. I didnt post initially cos didnt want to spook the primary ladies! there were a group of ladies meeting monthly in cardiff but I think the meetings are now intermittent. BCC organises a monthly meeting for secondary ladies in Cathedral Rd...but I rarely go cos thurs (the day of the meeting) I go to Bristol to look after my elderly mother. After secondary diagnosis i had emergency radiotherapy, followed by hormonr treatment and when there was some progression by capecitabine...an oral chemo....for the last 18months. Im currently pretty well ....Ive just returned from a week in Scotland....took my mum and did all the driving!.....Incidently mema, my mum was diagnosed with a boney secondary 13 years after primary....she has been on hormone treatment for the last seven years and is now 90!...its a worrying journey but easier when you see some sucess on treatment! Good luck with your onc appt. Pamx ... View more

With deepest sympathy. Best wishes Pam ... View more

Sarah...within the NHs there is also the possibility of taking all your pension as a lump sum.....I did this last year......its worth about 7 years of pension when you take into account its tax free...its only available if youare are considered "terminal" but I was able to do this with bone mets only.....it doesnt affect survivor benefits/pension....worth getting financial advice and also getting this option included in the pension statement! ... View more

Thank you for raising this Angelfalls...it was my thoughts exactly when reading BCCs response on my mobile last night but to difficult to respond on that! BCC provide services in Wales and also raise money in Wales...and Im sure in Scotland and Ireland but, like many other organizations are very quiet when it comes to making statements appropriate to areas other than England........It would be interesting to see what the current situation is with regards to funding of drugs not approved by NICE. Im almost certain that access is already much poorer in Wales....similarly to treatments such as cyberknife....But are they kicking up a fuss with regards to that.?......That is not to take away the issue of the drugs fund in England....... edit....Ive just read the daily mail article!......Indeed to quote them Access to new, non approved drugs in wales five times poorer than in england!.......Has BCC issued a statement on that? ... View more

Julsie....I have been on capecitabine for approx 18months........I have had probs with both hands and feet....at the moment hands have been most bothersome and 2 cycles ago I had a cycle off to let my hands settle....they are better but not perfect. I use flexitol at tnight on both hands and feet and use occlusive covers....clingfilm on feet nad plastic gloves on hands. Each day i wake with normal feeling hands and feet although they do get dry quite quickly after....only thing I would say is if you have open blisters you would ned to be careful cos my feet get boggy under the clingfilm which may increase risk of infection if you have broken skin. best wishes Pamx ... View more

Hi Julsie...so sorry to hear your news.....I thught i would tell you my story! Initial diagnosis grade and stage 2 2005...no nodes. treated with WLE, chemo and radiotherapy. In Dec 2010 sudden onset back pain whilst exercising which improved but never disappeared. Feb 2011 MRI showed collapsed T4, CT clear. emergency radiotherapy , zometa and exsemestane. Gradual progression and in Feb 2012 started capecitabine. Since then have been stable on capecitabine and am now on cycle 23. For a long time I had virtually nothing in the way of side effects but since nov I have had gradually oincreasing probs with sore hands and feet. .........At the end of the last cycle I had a cycle off....during which markers went down! Anyway feet recovered completely and hands were a lot better so restarted 2 weeks ago.....hands are dry butstill a lot better than before the break..although I suppose will deteriorate as I have future cycles....im thinking i may need a cycle off occassionally but for now am hoping it will continue to work......other have been on it longer but 17 months feels good!....hope you have similar sucess. Pamx ... View more

Hi Passthetea. Im not sure how to advize you re insurance ...I have secondary concer and insurance is always difficult without the additional difficulties you face. I have only tavelled in europe with cover from MIA but dont think they would cover the Maldives....Secondary ladies have been using eurotunnel insurance....if you are not having active treatment and your doctor says you are fit to travel it may be a possibility. Otherwise I think I might try approaching some of the charities which offer trips abroad to terminally ill children to ask who they use?....cant think of any names at the moment .......how about approaching macmillan direct by telephone to get advice. Good luck and let us know how you get on ...ther will be a lot of others interested in this! Pamx ... View more

Just to say my mum was diagnosed with quite an advanced BC in her 70s some 21years ago. She developed a hip secondary seven years ago and has been on arimidex since. We are due to go on hols to Scotland at the end of July. she will be 92 in sept! ... View more

Lemongrove....just a note of caution when interpreting papers.......the paper you quote has my consultant as one of the lead authors.....which doesn't make my interpretation any more valid!...but its a statistical paper which looks at survival in different countries and stage of presentation. One of the conclusions amoung others is that Uk women present at the same stage of disease as other countries ie disease is not more advanced here. Another conclusion is that patients who present with stage3/4 have worse survival in the UK. they raise the possibility that this is due to fewer women at this stage of disease receiving best treatment for their circumstances and that this needs further investigation........Many of us may believe that this is due to the variation in treatments in different places and the limits on access to expensive radiological and chemotherapeutic treatments...but the paper does not show this. ... View more

Hi there. Invasive means it is cancer. 1e the cancer cells are invading and spreading into normal cells. Sometimes DCIS has an area of cancer within it. Usually you couldn't tell with certainty from an MRI scan that the cells are invasive although it may give strong indications that this is the case. Normally that information and also the grade of the tumour would be found out from the biopsy or when the tumour is removed and looked at under the microscope, so maybe the report is commenting on the information given by the biopsy before reporting its own findings...ie extent, other areas involved etc. Pamx ... View more

Milo, just remember if you get/accept the job and you accepted tier 2 ill health nhs retirement you should discuss with nhs pensions....there are limits to what you are allowed to earn and you need their approval because tier 2 retirement means you are unfit to do any other job and the pension is enhanced to take this into account........I doubt you will be earning enough for them to refuse permission but its important to get their approval because survivor and dependant payouts could be affected as could your pension! sorry to add a slight complication! Pamx ... View more

Well the dry cracked hands and feet have finally won and so im going to take 3 weeks off capecitabine...hoping they will settle and maybe I can restart again then without the big C having a chance to escape control.......Ive got a hol in Northumbria/glasgow to look foward to and then Ruby Wax at Hay-on Wye so plenty to keep me busy! Pamx ... View more

hi Lemongrove...what a frightening turn of events for you. glad you are feeling so much better today. Well done Charing Cross! Take care. Pamx ... View more

Idon't think that the timing of vertebral collapse indicates the stage of disease necessarily but only the extent of disease in the vertebra that has collapsed.......So my secondary disease presented with collapse of T4 which was impinging on but not compromising my spinal cord.......I had emergency radiotherapy which commenced within 3 hours of the MRI! But at that stage I only had disease in T4 with very small amounts in T3 and T5........2 years later i have small amounts in several other vertebrae which are being held stable with capecitabine....and remain essentially asymptomatic...long may it continue! ... View more

Many hugs ...the situation we all dread...and good luck with your current treatment.......If this doesn't help Is this a situation where it woild be worth discussing the possibility of a biopsy.....just incase this may guide an alternative treatment option? pamx ... View more

Why not ask oncologist to sign....he is much less likely to charge. GPs are essentially a small business. they get paid to offer basic services to each of their patients but for most additional and private services they can make additional charges....a bit like solicitors but probably a smaller charge! Pamx ... View more

Glad to hear things are going in the right direction for you Scottish lass and you know your treatment plan. Hopefully the blood will perk you up and help with the tiredness. Looking foward to your chatty posts re charity shop shopping!...today bought a (fake!) cut glass vase for flowers £3! last week a nice wool mix 3/4 length zipped coat for £5.99. Catching you up! Pamx ... View more