Breast Cancer Now Forum

Hi Marial Thank you for your post. I think many will read it now and into the future and though they  may not reply will get comfort from good news posts. When I was diagnosed in 2012 my first question to the consultant was 'Am I going to die?' I had no idae of grades and stages and was just told it could be 'one of two operations'. I was on my own and did not even ask - I think I was in a state of shock. I know I got great comfort from women who posted good news so thank you. I am still here too! I had grade 2 stage 2, chemo/rads and now two and a half years years into letrozole.. Half way. Getting all the usual symptoms including dryness, joint pain etc. But I am still here and on a good day rejoicing! So far so good overall. I do have some down days - mainly because of usual life events alongside the cancer. I have learned many things on this road and made some changes for the good.  I have found mindfulness and tai chi  help me. I hope for continued 'no evidence of disesase' for all of us. Just bought a bike. Gulp. Haven't ridden for nearly 40 years! Going to give it a try....   All the best         ... View more

Hi   I am nearly 3 yrs post diagnosis having had WLE, chemo and rads. I have suffered right sided abdom pain since chemo no.5. It is a burning pain and the GP has prescribed amitripyline for nerve pain. My onc has referred me to a gastro consultant but referred me for an ultrasound scan on liver in meantime. I can really identify with not knowing how to relate to others - I have good days and bad days. The scan has put me right back in that very anxious place. I had a scan 2 years ago and the operator told me it was fine there and then. This time I was told the report would be available to my onc in 7 days. The person did not give any eye contact and sat typing as I left the room. This has added so much to my anxiety...I rang the helpline here which really helped and it seems some people who do US are radiographers and others are US staff - the latter more likely to have expertise in US. Have any of you who have had scans been told at the appt that the results were fine? Is there a policy not to mention results at the appt?  I have dealt with cancer by getting on with it and keeping worries to myself mainly (especially with my children) but would like more support from a few close adults. Trouble is I don't knowhow to get it! I feel upset that they can't empathise with the anxiety of fearing the cancer has spread. Thus I clam up even more. It is like a vicious circle. Waiting is the pits. Hard to be close to someone going through cancer I know but also hard to be the one actually going through it. Would appreciate any thoughts on US   xxx   ... View more

Hi Janet Had to laugh. I'm defo trying the fingers in ears startegy! Love it. Went to GP and he referred me for a liver function blood test. Said it would take a week for results but it takes a week to get the test done so it will be 2 weeks. Hate the waiting.... I think this is one of the worst bits of treatments. He prescribed amitryptiline as he said the pain may be nueropathy in my abdomen from the chemo.Thus, instead of waking up at 4, 5 or 6qam with mind doing overtime at least I am sleeping to about 7am. Went to a solicitor yesterday and was told husband will get half of everything. I took early retirement due to being ill and he will get about a third of my income. Hoping my liver test is OK because I think I need to get a job.  Will need to maintain my sense of humour. At least I will be free of him. Thanks for cheering me up! x   ... View more

Hi Janet Sorry for delay in  replying. Thank you so much for your kind thoughts. The only way to find out if Letrozole is causing the side effects is to come off it but I will try to persevere. It is hr abdominal pain which also gets me down because I don't know what it is and if it anything cancer related. Seeing GP on Fri to discuss... On top of this my ex is being a pain   (verbal abuse) - I am limiting contact as much as possible as I know stress is not good. I am going on a mindfulness day soon so looking forward to that as it always helps. Hope you are OK X  ... View more

Hi Janet Moan away -  please don't apologise. Share it amongst friends! I am in pain most days and keep it bottled in mostly. It is good to have somewhere to let it out. Currently I am having a bout of diverticular pain - never had it until 5th chemo. Had scans etc - my main worry though that the cancer had spread to liver/bones etc so relieved to be told it wasn't this. It is the worry which affects me most. I have started tai chi and have acupuncture (on NHS thank goodness) to help with hip pain but still worry re any aches and pains.  When it was mentioned that I might need Letrozole for 10 yrs it made my heart sink but I am taking it year by year - 2 down 3 to go. I am going through a divorce currently which is alos making me feel vulnerable because I don't know if I have to seel the house, how much of my pension I can keep etc. OK - moan over - thanks for reading! Hope your bones are healing well and visit to fracture clinic is helpful. Take care X   ... View more

Hi Janet Thanks for the update. Sorry you are in pain - my mother broke both her wrists and it was painful band made life so difficult for months.Hope you can get your hip sorted before too long.  I find a hot bath some mornings helps but not sure if this would suit everyone.  Some ladies believe that the brand of letrozole makes a difference to the severity of side effects - trouble is it varies from person to person so you would need to monitor it over many months.I have heard that Femara is better in terms of SE. Not sure I have noticed re brands and haven't had femara myself - it is more expensive so less commonly prescribed.   x ... View more

Hello Janet - would you mind sharing the MRI results with us? I know these can take weeks to come through - I do hope they are OK. I can realy identify with many of your experiences and feelings. I have done such a good job of re-assuring family that they think it is all done and dusted. My ex thinks I am cured. I wish we could say this.  I have hip pain and use acupuncture to control it. Lucklily I have this via the NHS. I was diagnosed with diverticular disease after chemo. I had mainly right side pain so had ultra sound and CT scans about a year ago  (they checked my liver etc) - had no symtoms prior to chemo though I know it is a condition present for years with no symptoms. Cancer made me think hooray - diverticular disease - better than spread. I have been in pain for over 3 weeks this time - on right side. My GP prescribed anti-spasmodics and said to return in a month if still in pain. Like some of you say I am obviously worried. It is the fear of spread that I find the worst. This is casts a dark shadow over me. I do a good job of beng as positive as possible but I find I am waking up every morning at about 5 and am exhausted. I am also on Letrozole so it is hard to know what are side effects and what needs more investigation. The physical and emotional are so closely related but it is the emotional side which really gets to me.  All the best all x ... View more

Hi Apologies in advance if you get 2 replies from me ...clicked post but nowt happened. Just wanted to say thanks for your repy and glad it has improved. Didn't want to take any more pills either. Going to try putting my feet up with me socks on - my mum used to say you can't be beautiful both ends!   x. ... View more

Hi Deelush   Just seen your post - did you get any answers re your feet and ankles. I have had the same (on letrozole). Doctor thinks it is due to hormone therapy. She mentioned possible prescribing diuretic. Hve your swollen feet and ankles got any better?     ... View more

Dear Maria   Thank you so much for taking the time to post this posiive message. It does help. I am 2 years past diagnosis, 18 months into hormone therapy and still have wobbly days.so your words re very welcome! x  ... View more

Hi All Great to read all your updates. My hair is like yours Ribby - my mullet has a habit of flicking up each side of my neck just behind my fuzzy jawline. Fabulous look. I want to grow it but think a trim may be in order. Little Bear - sorry about your rads side effects - does sound sore and hope it is getting better. Have a ct scan on 4th Juy as still got abdominal pain. Glad ultrasound OK but then you think - so what is causing the pain? Having joint pains plus think have frozen shoulder - anyone else got this? Catzoo - I could identify with your reaction to the rads. I have good days/bad days with emotions. Doctors and treatments remind me how vulnerable I have felt. Have been to most appts on my own and have more tests on the horizon including Got mammo booked for July. Continual reminders with all the drugs daily - also taking alendronic acid once a week to help improve bone thinning. A lot of us may be coming up to anniversaries of dx/treatments so may need to be aware this could add to the emotions? Hope all going on holiday have a good time and find some time to relax and chill. I am off today and tired after trip to London - trying to resist doing housework... Love Elaine x ... View more

Hi amd66 I have been back at work for about 5 weeks and am still phasing back. Will be full time in about 2 weeks. By the afternoon I am sooo tired and like you have a different perspective on it now. The letrozole may be adding to the tiredness - hard to say plus I am getting bloating in midriff area. The organisation I work for is offering voluntary severance/early retirement. I have expressed an interest - they may refuse but I have asked for the figues so I can think about it...... xxx ... View more

Hello Thanks all for your kind thoughts re the results. I am counting my blessings. I have also noticed feeling a bit weak - eg opeing bottles and the other day Ihad problems opening a taxi sliding door. I put it down to my need to get fit again and thought chemo had acted like kryptonite. Looking at buying new trainers, have started walking every day and intend to find a gym. Great to hear about holidays and nights out. xxx ... View more

Ha ha - loved this story - how to explain that one? You could say you are a model (or exhibitionist) in your spare time!! Went for the scan today and was told my liver, gallbladder and kidneys were fine so far - what a relief. I went to the park and had a lovely lunch at an outside table cos I had't eaten for about 8 hours. Then I went for a walk in the sunshine and shared my apple with a squirrel. Felt more at peace than I have for ages. Not sure what the soreness is though. I will give it longer and see if it gets better. Maybe if I am less stressed after the results today it will improve. Was nice she told me there and then but I was bit surprised she did. Take care everyone xxx ... View more

Hiya Little Bear thank you for your best wishes for scan tomorrow. Getting bit anxious now in case they find something nasty. Also hate waiting for results - brings back all the worry again. Have to fast for 6 hrs before it with ony sips of water if need them. I am also a fuzzy face - probably had fuzziness before but noticeable now as got used to bald faced feel? With letrozole I have less flushing (at moment) and more sore joints. Hope your rads go well. One day during rads when my breast felt hot I opened the back door and exposed it to the winter air! Bliss. Luckily not overlooked by next door! x ... View more

Hi Ribby Isn't it good when we come out of onc appt and feel better? Lovely to hear about the fundraiser and the modelling. We have been thru a long trip and are further along having faced up to the dx, treatments and all the emotional ups and downs. Haven't made sense of it all yet - may be there isn't any sense to be had but I know I am not the same as I was at the start. Your friend is a star. Once I get fit.... x ... View more

Like Joan my hspt recommended Bionsen as it doesn't contain aluminiun Good luck with rads ... View more

Hi Kay Thanks for asking re bone scan.. The GP next week is going to help me manage whatever the resuts say and andy meds etc. Had post rads follow up yesterday and they had a copy of the dexa results but the nurse I saw first said she couldn't interpret the numbers in the results but she thinks it says there is osteoporosis in the spine. I may be taking a weekly pill though it was best to discuss with the GP. They need to prevent worsening as I am on Letrozole. I was surprised re the results as I used to go to the gym etc and have a good diet before dx. The main anxiety for me has been the pain in the right abdomen (since chemo 5) so she called the onc in to have a feel. She couldn't feel anything but has ordered an ultrasound scan 'to put my mind at rest'. I did feel a bit re-assured but won't know for sure until results - they said the results would soon after the test.The nurse has given me her her number and would be prepared to discuss results over the phone if I was worried or I can come into clinic either the same week or the following week after the test. Re the letrazole - how you getting on little bear? I'm still getting some soreness in joints - when I get out of bed or sit still it is ouchy for little while but does wear off after a bit. Noticed some dark hairs on chin...more than normal as I think oestrogen going down. Has anyone else got this on hormone tabs? I'll have a beard next time I see the onc. Time to get some lovely fresh air. The sun is shining and I am going to sort out my greenhouse, plant some seeds and relax as much as possible. Have a great w/e everyone xxx ... View more