Breast Cancer Now Forum

Hi everyone, Sorry I have not been on a while ......Family has been hectic as usual with Hospital visits and tests for my youngest and preparing my eldest for High School. Oh and my Dad fractured his hip last week but unfortunately hewis in not our local Hospital as he fell whilst in Bakewell and there nearest Hospital is Chesterfield which is a 2 hour drive to visit. So we are having a bit of fun but it keeps me going. I had a ct scan in May as my tumour markings in blood results had been gradually going higher over the last 12 months. I went to see my Oncologist in June and was told that Tamoxifen and ibandronic acid are not working as they should. This means that there is still cancer active in my bones. He said there has been deterioration in some bones especially my back. That is probably why my back went a few weeks ago and could not straighten up for a week. Anyway he could change my tablets but we agreed to do another test....urine which was sent away and are waiting for results before we decide next step. He would have changed med straightaway however once I have I can't go back on tamoxifen so I just want to keep as many options as I can for as long as I can.The Oncologist made some suggestions of alternative meds but can't remember. Anyway not good news but not bad news either. Just keep on going and assess each day what I can and can't do . I am thinking of using a mobilty scooter for longer trips. My husband says I will be like Madge off Benidorm ! Cheeky devil! I will get him when he is not expecting it lol! Take care everyone and keep your chins up! Racer ... View more

Thanks Val I appreciate your comments which have made me feel not as worried. I will let you know results from ct scan. I had ct scan last week and have not heard anything so hoping this is positive. I see onc on 28th, May so should know what the plan is. I think I had got use to everything being stable so was a bit of a shock. However, I had been told that tamoxifen would stop working at some point but they were not sure when but they had a back-up plan. Just have to put my trust in the Docs. How are you doing ? Take care everyone and keep your chin up xxxx ... View more

I am finding site a bit difficult too Suppose I will get use to it.......I don't like changes lol ! Just read Claire's comments regarding her situation. I was diagnosed in June/July 2010 with bc and bone mets in spine, pelvis and hips. I was put on Tamoxifen and ibandronic acid. I had a really good response however, my tumour markings started to go up in March last year so I had my ovaries removed and 5 weeks later a mastectomy as it was felt that this would reduce the oestrogen so that meds would work more effectively. I saw my Oncologist a couple of weeks ago who told me that my tumour markings have been gradually increasing over the last 12 months. They had not told me beforehand and I was a bit shocked as I expected everything to be stable . So I had a ct scan yesterday to check if there is any spread of cancer and they will decide what treatment I will need whether it is a change of hormonal med or other. Trying not to worry but cannot help it and have felt really down about it. Sorry I tried to keep it short. I have made many plans and we are hoping to go to Orlando later in the year as this is one of my wishes off my wish list. I will keep my fingers crossed and everything for you xxx ... View more

Thanks Val. Collectewd my youngest today so we are all happy. I am walking a bit better don't know whether it is due to the mst. Spoke to gp on phone yesterday and still wants me to have ct scan. Fingers crossed. Take care everyone xxx ... View more

Hi everyone, not posted for a while. My thoughts are with everyone that are having a bad time mo. It is hard to stay positive when you are worried about tests. I hope everthing settles for you all. We have had a hard week.....On Tuesday , my back went on Tuesday....it took me 30-40 minutes to get down my stairs I was in agony. In the end my elderly parents had to come and help with me and the kids (3,8 and 11). I went to see the Gp and he wants me to have a ct scan to make sure problems with bone mets in both hips and pelvis are not the reason and he doubled my mst as it was not touching the pain. You can't help to think it is the dreaded C causing problems. Then, my 3 year old who has health problems had to be rushed into hospital Tuesday night due to a gastro bug which puts him in shock. Unfortunately, the whole family caught the bug and not been able to see my youngest as taking it on the ward. On a positive, I have nearly lost a stone ....I wouyld have preferred to have done it the diet route lol! Just waiting for ct scan now....and my back feels a bit better but i felt something click in my left hip so wondering if something had moved. I am trying not to worry. Take care everyone Lisa xx ... View more

Hi everyone, sending my love to you all especially the ladies who ae having a rough time at the moment. Hope things improve for you xxx I saw my onc recently and told him that I am still having some pain in booth my hips and lower back. I recently had rt before Christmas on my right hip and said perhaps I have not given it enough time. The pain is worse at night-time and I get the shakes with it sometimes. The Onc said I should feel some improvement and too soon to consider more rt however, my hips are in a bad state fom the bc and referrred me for a urine test to see if fragments of bone are being passed in my urine as my bloods are ok. Has anyone had a similar experience? The urine test was a challenge as my onc had told me I would have an ordinary sample bottle I started to laugh as it was 5 litre bottle which I had to store all urine over a 24 hour period. I thought that I would never fill that! Sometimes I wish i was a man lol xx ... View more

Hi Rosie I can't answer all your questions as only diagnosed in 2010 so still getting to grips with everything. I am lucky that I have a brill onc who listens to me and never pushes me out if I have been in for a while. That is probably why hi sclinic can run several hours late but you don't mind as you know you are getting the best treatment. My Onc referred me to Macmillan Nurse when I was diagnosed which we were surprised at but he explained they can offer pain relief and other support especially about benefits. I don't have regular contact with her but know she is there if I need it and she will liase with my GP if I need my painkillerschanging/prescriptions arranged. So do push your onc to refer you as you will benefit from their service.Hope you go on ok as you need your pain management sorting to make you more comfortable. Lisa xxxx ... View more

Same as everyone . Clare my thoughts are with you and your family. ... View more

keep my fingers and everything crossed for you Dawn. Keep us posted how you get on! Take care xxxxxx ... View more

Hi LizH Thankyou for telling us about the med you are taking for hot flushes. I will speak to my Onc next time I see him. I will try anything to reduce the sweats .......not very pleasantxx ... View more

It is difficult to say how long. My Onc has told me it will catch up with me at some point but cannot say when. He has a plan and keeps a close eye on me. I take each day as it comes and make the most of the time I have with my Family. I am working part-time but at times find this exhausting so weighing my options up at mo!Think I want to find a small job just to get me out of the House. I have not been on for a while as I had mastectomy in May followed by rt for 3 weeks. I am due to have some more rt as my right hip is aching especially if I walk any distance......start to shuffle! I saw a different Onc which I did have to battle with her as she said it was my meds making me stiff. I finally convinced her last week as she looked at a previous x-ray and agreed that I had some changes in my pelvis and hips.At least I will be sorted for now! I do find this post helpful....and like so many of you have already said have the same experience that people will say I look really well.Hard to believe I am living with an illness. ... View more