Breast Cancer Care Forum

PS - remember you have rights at work under The Disability Discrimination Act. ... View more

Hi Kay I started Xeloda in December 07 for mets in the liver, bones and lymph nodes of the chest. Back then I couldn't walk more than 15 steps without becoming out of breath. Things gradually improved and my latest scans showed significant shrinkage of the tumours. My greatest problem with Xeloda is that initially it made me lose my appetite and I lost a stone in weight. I've gained half of what I lost now and feel much better. I have level 1 hand and foot syndrome (redness but no pain or peeling) but I've been applying aqueous cream faithfully every night and morning. Keep a note of all side-effects and mention them each time you go to the clinic. There are lots of medications that can help and your oncology team really do want to make you as comfortable as possible. As regards work, I think it's an individual thing. I haven't been working since my mets diagnosis but that's because I still get tired and need my afternoon nap! Make sure you apply for Disability Living Allowance under the special rules. You get the care component automatically as long as your GP agrees to give you a DS 1500 report and you can even get it if you work. Other than this all can say is good luck. It does get easier, I promise. You just find your way of coping. Hugs, Lolax ... View more

Hi Tracy My oncologist actually recommended a few drinks as a way to boost my appetite even though my liver function is slightly reduced. I have been told by several medical people that even a heavily diseased liver can function fully - in fact, when they do liver transplants nowadays one liver is split between two patients - so I would double-check with your doctor/nurse and then just enjoy without guilt. Goodness knows we have little enough pleasure as it is! Lola x ... View more

Hi Bimbo Sorry to hear about your diagnosis. I know exactly how you feel. I was diagnosed in November with mets to bones, liver and lungs too and my consultant gave me only 'months'. I have a two-year-old daughter and I refuse to believe I won't be around to see her at least start school. So I ignore what he said and concentrate on all the stories I hear of women who have been told the same years ago and are still here. A woman I know through an American website has been living with the same mets as us for almost 8 years. She hasn't done anything special - she has just taken the treatment options available to her and been lucky. She feels well and can do most things. When I feel helpless I think of her. Love Lola x ... View more

Hi Pontentilla Congratulations. That has cheered me up. I was only diagnosed 4 weeks ago and so far I've been feeling pretty rotten. I was due to start my second round of Xeloda yesterday but my blood counts were too low so I needed a blood transfusion today and will have to wait a week to restart chemo. Do you remember having similar problems at the start of your treatment? I've been feeling rather depressed today, convinced I'm going to be one of the unlucky ones. Thanks Lola x ... View more

Hi Jim So sorry to hear about your mum. I just wanted to add that in a small number of cases of even primary breast cancer no primary tumour is ever found and the condition has been diagnosed by other symptoms such as underarm swelling. This happened to a friend of mine but they were able to tell by looking at the characteristics of the cancer that it definitely orginated in the breast. You may want to ask your mum's consultant exactly what he meant by 'secondary' breast cancer. As the other girls have said the term is normally reserved for cancer that has metastacised (spread) to other organs. However in your mum's case he may have meant that, although it was found in her lymph nodes, it is actually breast cancer that has moved there rather than a condition such as lymphoma which originated in the lymphatic system. From a completely layman's point of view I would say it is likely your mum has had undetected/undetectable breast cancer for some time and it has not been caused by her treatment. If you want me to ask my friend a bit more about her situation and diagnosis please feel free to ask here or send a personal message. All the best and I hope your mum tolerates the chemo well. Lola ... View more

Hi Liane Tumour size is not a direct indicator of aggression - it is an indicator of stage or how long the tumour has been growing. However, staging has fallen out of favour in the UK because, as Jane says, there are many aspects that make up your pathology report and each is looked at individually. I am in touch with young breast cancer survivors in the US and they are moving away from staging there too as they think the importance of the size of tumour has been over-estimated. It is now being thought that as all cancers behave differently the individual characteristics of your particular tumour will determine outcome regardless of how long it has been around. My tumour was only 3cm and I had no lymph nodes involved but I still got secondaries, yet I know women with far larger tumours and all lymph nodes involved who are cancer-free ten years down the line. So big lump and high grade does not necessarily equal poor prognosis. I know it's hard but you have to tell yourself you have as much chance as the next person of beating this and leading a long and happy life. The shock will lessen with time and you will find strength you never knew you had. Keeping my fingers crossed for you. Love Lola x ... View more

potentilla I started on Xeloda two and a half weeks ago and am already experiencing anorexia. I have lost 10lbs already and am considering Complan or something similar as all I can eat is soup or anything very liquidy. I have the additional problem of paralysis in the right side of my face and a very dry mouth which makes eating even more difficult. I must say I've been very heartened by this thread. My breast surgeon told me I had weeks without treatment and months with it (I have mets to bones, liver and lungs) but I now realise this is worst-case scenario and there is hope that I may do a lot better. I read recently that a breast cancer vaccine has been developed in the USA and the first women to benefit from it will be stage IV women who have had a good response to treatment and are considered NED (no evidence of disease). So there's hope for all of us. Lola x ... View more

Thank you so much for all your words of encouragement. It helps enormously. Heatherlou - they have me on hormone treatment initially (zoladex, celebrex and ethemestane) but the plan is to do chemo too. I have paralysis of the right side of my face and am waiting for the results of my bone scan to see if it is a bone met that is causing it. If so my oncologist wants to do radiotherapy on that area so I can't start chemo until that is done. I see him again tomorrow. For the past week I feel I have been waiting to die but I can see now that there may be hope and I am ready to fight. Love Lola x ... View more

Cb102 The website I read this on is www.youngsurvival.org I'm afraid I don't know any more than I've said about these cases. Love to you all Lola x ... View more

Hi Kelly I sympathise. I finished treatment for breast cancer in April and was doing great. Then about six weeks ago I developed excruciating rib pain which at its worst left me unable to even lift a cup of tea. No-one can tell me what caused it - they just say it's muscular and 'caused by my treatment'. I'm on painkillers and anti-inflammatories which help a little but I'm miserable. Being in constant pain really wears you down. Your symptoms do not sound typical of breast cancer (although you can never be sure) and that is probably why you are being 'dismissed'. If I were you I would pursue this as a painful condition that requires investigation rather than possible breast cancer, at least initially. Go and see a different GP, stress how much this pain is affecting your life and get some decent analgesics for a kick off. Insist on seeing someone who will take your concerns seriously. There must be breast specialists out there who specialise in breast conditions other than cancer. Maybe they can do some scans to find out what is wrong and then you'll hopefully get reassurance that it isn't cancer. I know it can be hard to be assertive but no-one should have to live in pain. Just keep telling yourself that. Love Lola x ... View more

Hi Pam I haven't had a bone scan but I have had just about every other type and the hardest bit about them is lying still! Seriously, I never felt a thing through any of them. Many of the ladies on the Secondary breast cancer board will have had bone scans if you want a specific account. Good luck. Hoping everything is clear. Lola x ... View more

I have just heard about a 20 year mets survivor (that's where it has spread to other organs in the body). She is a lawyer and is still practicing. If you have primary breast cancer - ie it is contained within the breast, surrounding tissue or lymph nodes - there is every chance it is completely treatable and you will live to be an old lady. ... View more

Hi Denie Just wanted to add that it is common for core biopsy results to take a week as they watch the cells under a microscope over a number of days to see how they behave. I had my breast cancer confirmed by a fine needle aspiration and the core biopsy was just done to learn more about the cancer. If your core biopsy was used as a diagnostic tool it could be that they are satisfied by looking at it that it isn't cancer and there is therefore no need to continue to watch it. That would certainly make sense. If it was cancer I would imagine they would want to keep watching it for the week. I certainly hope I'm right. Good luck on Monday. Lola x ... View more

Hi Rizzo Aching joints can be a legacy of chemo or can be caused by Tamoxifen or chemo-induced menopause. I've been using supplements which contain both fish oils and glucosamine and they have worked wonders. Joints feel great now and, as a bonus, I'm hopefully more intelligent! I noticed a difference within a couple of weeks. Good luck Lola x ... View more

Woohoo for cysts! Glad you didn't have to join the club. Lola x ... View more

Hi Alison I know the waiting can be extremely difficult but I just wanted to reassure you that waiting a further 5 weeks would have no impact on your prognosis in the unlikely event that you have breast cancer. The general rule of thumb is that periods of 3 months or less (from finding the lump to diagnosis) make no difference and this is for women who haven't previously had any scans. The fact that you had a clear mammo and ultrasound just over a year ago is even more reassuring as they can pick up tumours that can't yet be felt. I have my next three month check also in five weeks and, even though I have three tiny lumps and have had breast cancer, I'm happy to wait to see my consultant. If you can bear it I would go with what the bc nurse says and trust your consultant. And don't feel embarrassed about having contacted her. It's not that she wouldn't have wanted to help; it's just that she is not allowed to. Her job is to deal with the physical and emotional fallout of a breast cancer diagnosis and she is only permitted to re-refer ladies who fit into this category. It is a real shame they can't have someone for patients like you but I guess it all comes down to money! Good luck and let us know how things turn out. Lola x ... View more

Hi kilbeyrat Pain on its own is not normally a sign of breast cancer (although it can be) so it seems sensible for your doctor to treat a painful lump as an infection in the first instance. Given that you have been producing milk for two years a blocked milk duct definitely sounds like a possibility. The bottom line however is that even a GP cannot know for sure so please make sure you make an appointment for two weeks' time. If the lump hasn't gone away or reduced in size by then urge your doctor to make a referral to a breast clinic so you can at least put your mind at rest. The reason I say this is that my lump was dismissed as 'probably pregnancy related' as I discovered it five months after having my daughter. The doctor told me to go away and come back if it 'started bothering me'. 8 months later it felt noticeably bigger, I got an urgent referral and it was cancer. I'll never forgive myself - or my GP - for allowing that to happen. I hope the antibiotics kick in and you notice a difference soon. If not it doesn't mean it is cancer. There are lots of benign breast conditions that can cause pain/lumps. Best of luck and please let us know what happens. Lola x ... View more