Breast Cancer Now Forum

Hi   I have been prescribed the same thing/ same dose although I am concerned about the  'very common' side effects. One being  sweating , including night sweats ???! This has been prescribed to help with the horrendous hot flushes so I'm confused. It also states that you should avoid alcohol , I don't drink anywhere near what I used to since diagnosis but I don't fancy completly giving up ... seems you can't win. I am going back to doctors to discuss all the side effects as she told me to read the leaflet before I started taking them to make sure I was happy with it. I do know not everyone gets all the side effects stated and maybe if you read all leaflets with medication you wouldn't take anything but I am really not sure.   Any advice would be helpful .. wax    ... View more

Hi...I thought you'd all disappeared too just getting on with life in general. I've had my first mammogram but still waiting results, also waiting for physio to start for my slipped disc.Next for me is mx on right side to keep me sane , hopefully that will be around March time and then I can start looking for a job but at the moment I'm just enjoying ME time . It has been wonderful and helpful having you all by my side during this journey and I thank you all for your support , if I can get my daughter to give me a facebook lesson I will give it a go ..Best wishes , love and luck to you all ...Linda xxx ... View more

Hi Ladies, I have been on tamoxifen for four months now and find I wake every night to go to the toilet it is easing to once or twice but at the start I felt like I was up and down all night ! It also seems to correspond with having a hot flush and this happens during the day too?? Does anyone else have this ? xxx ... View more

Hi Sarah..I've just been through a similar thing, painful hip mine is giving me a sciatica twinge when I lie down or roll over in bed. I had a MRI on my spine and pelvis and was told I had degenerative disc disease where the spongy part of the disc in between the vertebra has worn down and moved slightly pressing on my nerve. I am told it is common and it is an ageing process, I am 46! I have been referred back to my gp for treatment. I would see your gp and ask them due to previous diagnosis if you can have an MRI to check whats going on so you can hopefully put your mind at rest. Let me know how you get on, hope I have helped a little ...Hugs Linda x ... View more

Well glad thats over...got my mri results , I have degeneration to the discs in the lower back which is pressing on my sciatic nerve causing the pain..but No cancer seen thank god ! So I have been referred back to my gp to sort treatment. I asked about my indigestion, the oncologist didn't think that it was the Tamoxifen and has given me a prescription to collect . I'm to see if they help but if I still have symptoms after 3weeks to go back ... Ruth . Yes Tamoxifen is to blame for the joint aches..when I first started on it I was like a cripple , if I sat down I struggled to get up, getting in and out of the car was really difficult. I changed brand from wodchart (spelling !??) to teva and although I still feel like I need 'oiling' to get my joints moving in the morning it is a bit easier. My hubby and daughter had a laugh at my expense at the weekend when I knelt down to get something from a low shelf at B&M and just couldn't get back up ..embarrassing having to ask for help !!! But I suppose a small price to pay...as I keep saying to myself ...a tablet a day keeps the cancer at bay !! Have a good evening ...Linda xx ... View more

Thanks Ruth..I'll ask the oncologist on Monday, I know my minds racing and I'm not thinking rationally but with Lobular bc it tends to spread to the GI tract xxxxx ... View more

Hi ..I wore mine for about a week following mx as I was quite inactive during the first few days following surgery once I was up and about I removed them but I don't remember getting any advice about it. Just a little note ..keep hold of them they come in handy when you travel, my oncologist suggested wearing them when I flew to Lanzarote at Christmas because of increased risk of dvt whilst on Tamoxifen xx ... View more

Morning Ladies....haven't posted for a while as I didn't want to drag the good new year vibes down...I'm waiting results of mri on pelvis and spine following back and hip pain a bit like sciatica and have to admit I'm scared what they may find. I seem to have fallen into the doom and gloom mode, every pain and niggle makes my mind race. I now seem to be having a sensation of indigestion ,burping more than normal and am hoping this is a side effect from the tamoxifen.....will these feelings ever go away?? I have reiki this afternoon at the hospice so I'm hoping that will settle me down, oncologist on Monday and 1st mamogram since diagnosis on my remaining boob on Tuesday....its all go , Ruth hope your portacath removal is not to painful next week and you can tick that stage off towards moving forward. Gill your holiday with the kids sounds fun albiet bound to be a busy one but surrounding yourself with family once you've finished rads will give you a well earned boost. Sheryl ..post some of your wonderful positivity my way . You seem well on the way to your new normal with your job...perhaps thats what I need , find a new job and keep my brain occupied although at the moment with all my appointments how do I fit it in ..lol Enjoy your day ladies..weekend looming with hopefully lots more R & R xxx Linda xxx ... View more

Happy New Year to you all ..here's hoping that 2015 is good to all of us. Its been quiet on here so I am hoping you all enjoyed Christmas and have been too busy relaxing to post ! My Christmas was the best ever, I made sure I joined in where before I might have held back and it felt good. We hired bikes and rode round the coast and I even joined in with my daughter in a Foam Party at the hotel...sad mummy dancing and all !!! the most sureal part was Father Christmas arriving at the Hotel on Christmas Eve on his camel. Christmas day was spent on the beach...strange but wonderful, we enjoyed it so much we are hoping to go again next ..oops sorry 'this year'.... Back to the appointments next week and January's calendar seems to be filling up  , MRI, Yearly check, surgeon appointment, oncologist appointment, physio and councelling.. does it ever end.. Hey ho onwards and upwards, feeling refreshed and ready to face the next stages. I am hoping that all the side effects of treatment that were lingering are easing now for you all , hugs and much love ...Linda xxx ... View more

Hello ladies..its quiet on here so I am assuming all is well? Ruth and Sheryl ..are you both finished with your radiotherapy now? Hope neither of you are too sore? Jan , I hope you can muddle through christmas it will no doubt be a difficult time for you...but remember the smiles and the good times. I'm concentrating on those...remembering my dads smile , his silly faces with his christmas hat on...watching the Two Ronnies earlier made me laugh...Dad loved them. The first Christmas without them ..not good and I'm wimping out, getting on that plane on Thursday and getting the heck out of here.....feel selfish leaving the rest of the family behind but for the first time ever I'm gonna think of me and what I need which is to enjoy the company of my husband and my daughter, recharge and come back ready to face 2015 . Merry Christmas to all of you..lots of love Linda xxxxxx ... View more

Hi Matty, Hope you don't mind but I thought I'd share my experience of surgery and reconstruction not sure if it will help? I had mx and immediate implant reconstruction in March this year followed by chemo and rads. I was made aware that the implant could damage during rads but I went ahead anyway as I couldn't face waking up with only one breast and the thought of just not being me, even if I could only achieve this in my bra (I'm lob sided without it) . My oncologist changed the radiation therapy so I had it at a reduced rate, 25 sessions rather than 15 + boosters in the hope that it would lessen the likely hood of damage.So far so good , I finished about a month ago , it was slightly firmer to begin with but has since softened. I am aware that it could still change in time but if it does then it can be replaced. It's not an easy decision to make it is very personal to you ...not sure if I've helped any? Alison , I hope your surgery goes well, I wish you a speedy recovery. Good luck to all you ladies having scans or receiving results this week...hugs Linda xxx ... View more

Hi Jane, sorry you find yourself here but we will all try and answer your questions to the best of our knowledge. It is true that lobular breast cancer is harder to spot as it grows almost spider like rather than presenting as a lump. I found mine because my nipple started to point to the left slightly and my tumour ended up being 5cm ! I understand why you may want both breasts removed as lobular cancer can have a tendency to be bilateral..I have decided to have a second surgery to remove my right side following my first mx on the left now that I have finished treatment. You may find as I did that they like to do one at a time , this is because of recovery time and not compromising you in case of infection which could delay chemo if needed. I have also read that 5 yr survival rates are slightly better for lobular patients but even out with ductal by the 10 yr maker, but as we all know this disease is unpredictable and these are just statistics. You mentioned about having a bilateral mx because you wouldn't have lymph nodes to mop up the cells? The node clearance would be on your dx cancer side only so the other side would still have nodes present. As for chemo , I too read about it not being as effective but my oncologist wasn't aware of this. If you have positive lymph nodes then I would discuss it with your oncologist as it is likely to be offered and evidence of spread beyond the lymph nodes to other organs would be stage IV and therefore incurable...in my opinion throw everything at it before it gets that far, at least then you'll know you've done your best......hope I haven't rambled too much and been a little help to you ...sending you hugs ...Linda xx ... View more

Sarah, please don't feel alone. You'll find many shoulders to lean on here, I'm finished with active treatment now and starting the tamoxifen journey..its taken almost a year from me but the support on this forum has been invaluable. If you have any questions please ask as I'm only to happy to help you and all the other lobular ladies on this thread if I can xxxxx Linda xxx ... View more

Sheryl, what brilliant news, congrats and enjoy your wine and cheese , sounds lovely. I agree with you Ruth, it starts somewhere! I asked for a test as my hubbys mum died of breast cancer at 29 and now I have been diagnosed so I'm worried for my daughter as its on both sides of her family now, but they said no ? Really not sure how they make their judgements regarding gene testing...... Its nice to hear that you are both coping with the radiotherapy and nearing the end now. I'm busy getting ready for our holiday ..only 11 days and counting !! Really can't wait , we're having Christmas next sunday with my mum and stepson and daughter in law coming for lunch..so my daughter will get her presents early....it made sense as she asked for a kindle, this way she gets to use it on the plane. Were getting up early to go to the German Market in Brum tomoro...always gets us in the christmas spirit...hi to Gill and Jan ...hope you all enjoy the weekend , Linda xxxx ... View more

Flower, your right it is rubbish and my heart goes out to you and your family. I was diagnosed with lobular ,5cm, micromets in nodes,mx,chemo and rads which I ve just finished nearly a year on . I am having a sciatica type pain in my back which is being investigated next by mri..I am worried , even though all my previous scans where clear I know that lobular can lie undetected ...can I ask how your mets were discovered? Hope and hugs to all you lobular ladies xxxxx ... View more

Busy week for me ! Went to oncologist on Monday with a list of questions, looking for some reassurance really now that active treatment is over...but she was not committing herself to anything , which left me feeling quite unsure and apprehensive about the future. The BC nurse did say its normal to feel this way as no one has the answer to the big question ..'will it come back'....it seems we are just left to play a waiting game and hope! I think deep down I knew this but just gave it one last try with the oncologist for that little glimmer .!! Following my nightmare trying a bone scan she has decided to send me for another MRI on my spine instead as I'm still experiencing a sciatica like pain which needs investigation, I can have this at Redditch where I did my chemo and hopefully they can get the cannular in for me . I also had an afternoon at the hospice..lovely place although I was a little unsure about going but don't worry it was for complimentary therapy ...it seems its all done there. I saw a lovely lady who chatted about how I was feeling, what I'd been through , diagnosis and treatment etc a bit like a therapy session in itself . I have now been offered 6 sessions of reiki ....don't know how its spelt but its mind, body and soul massage techniques for relaxation. I can also have physio on my mx arm which has stiffened since rads finished and she also thought I was in need of some counselling as I've not really mourned for my dad with everything thats been going on. So I came out of the session feeling happy in that all this extra help was available and would hopefully help with the moving forward part of this journey. I've also finished my part of the decorating ..I gloss hubby does emulsion ! Only I got the short straw as it was the hall stairs and landing ,10 door frames, skirting and the stairs...I hate the stairs! But its done now so I'm happy and its kept me occupied. I looked at the calender for next week and No appointments ..I have a free week !! Cant remember when I last had one of those! Knowing my luck the appointment for the mri will turn up ! Hope you are all doing well ..hugs and fun to all ....anyone putting their christmas tree up yet or is it to early ????? ... View more

Hi..I too have just finished treatment, mx with implant,chemo and rads and have been told that I don't get any yearly checks done on that side.I have now asked for mx on good side as I had lobular cancer, which didn't show up only as a small area of concern on the ultrasound.The only sign anything was wrong was that my nipple pointed slightly to the left .In the end it turned out that I had a 5cm multifocal mass! I asked the bc nurse why there was no follow up and she said that it was because there is no longer any breast tissue there and the only sign of a reaccurance would be a pimple or small lump on the skin or around the scar. My concern is that lobular doesn't present as a lump but lies flat so how would you notice it or does it all change because there is no tissue left. Its confusing me , does anyone else get any follow up after mx ? Any advice to settle my mind would be appreciated ?....Linda xxx ... View more

Gill so glad you've come through your op ok apart from some discomfort with the cannular ,I can fully understand how that must have felt ...blumin veins !! Ruth hope you are getting into the 'rads' rhythm and your sessions are running a bit more smoothly now ?? I've been to see the surgeon today, MRI was clear... but I've been referred to the lymphodema ( cant spell that one !!) clinic to see what can be done about the swelling of my hand, hopefully its just temporary whilst my veins are recovering from chemo. The surgeon has also agreed to my request for a mastecomy on the good side , its what I want as my cancer was lobular and I couldn't feel it this time round and the mass ended up being 5cm ! I know it will put my mind at rest and help me to move on and I would have had to go through surgery anyway as I am so lobsided. He said he would try and get me in by the end of January ...fingers crossed . Yesterday was hard but Ray was so popular and well loved it seemed the whole of Alcester turned up to say a final goodbye...there must have been at least 400 people there , some couldn't even get in the church ...xxxx ... View more

Sheryl..I wimped out and went to the hairdressers , I was to worried that with all the grey it would turn pink ! She got in touch with the rep they use and asked his advice..he said after 4 months as long as there was enough hair and it was not brittle or damaged it would be ok to use most dyes just avoid peroxide. I had a skin test too just to make sure . I'll have it done again before I go away then start doing it myself with something from boots as it will be cheaper, I'm also having my eyebrows tinted and waxed on Tuesday hoping that I may be able to give more definition to my face as my fringe is soooo short ! and its an excuse to spoil myself ...trying to lift my spirts.. Still waiting results from my MRI but really trying not to worry, I lost a dear friend to Cancer last week and his funerals on Wednesday...so my minds been on that. He was such a positive man right till the end and his support was invaluable to me....its so not fair ..1st Dad now Ray xxxx Linda x ... View more

Gill, when I took my mum for her jab I asked if I was eligable for one this year following the diagnosis and was told that I didn't meet the criteria ! Strange ..... I've taken the plunge I'm now chocolate brown... no grey hair ! It has improved my confidence no end going out now with no hat on for the first time ....wish me luck xxxxxLinda xxxx ... View more