Breast Cancer Now Forum

Not everyone who has breast cancer surgery gets to know their Her2 status - I was told in Leicester they "don't always test" ! Not very reassuring but true. I do have quite a few concerns about the atoryline - Why hasn't Sally shown any angst with regard to disfiguration after surgery? Why isn't she worried about Kevin's reaction to her scars? How did she manage to raise her arm so quicly after surgery? Why isn't she telling everyone about the planning meeting before radiotherapy and the associated tattoos........................I'm getting weary just watching ... View more

I am so sorry to hear about the delays you have all experienced and hope that you do finally get your results- it's now two years since I was diagnosed with DCIS (high grade, extremely active cells) and had a WLE with 25 sessions of radiotherapy. I spent almost a year waiting for the results of the biopsy so that I could make an "informed" decision about taking Tanmoxifen - then they said there were no results as they didn't routinely test!!!!! I'm still choosing to take the Tamoxifen - even though they can't say for sure whether I need it or not - better safe than sorry 🙂 Love to you all Maddy x ... View more

Have to go to your GP or hospital clinic for exemption certificate - still not sure whether Tamoxifen will qualify - after all, they do say that DCIS is "pre-cancer" !!!!!! ... View more

Lisa - hope you don't mind me adding my comments with regard to Tamoxifen. I was diagnosed with DCIS last August and had a lumpectomy (WLE) of an area of 5.5cms. Thankfully I didn't need mastectomy but it was a close run thing. Had 25 sessions of radiotherapy. My surgeon recommended that I take Tamoxifen as the cells were "High Grade" and "angry" - I agreed to take it on the understanding that tests would be made to decide on the er+/- (hormone receptor) status - the results would then prove whether I needed to keep taking it. After a two month wait and endless phone calls to the hospital for the results I was informed that they don't routinely test DCIS !!!!!! So - I'm taking Tamoxifen but I may not need it - I'm having hot flushes (more like cold drenches during the night!!!) but thankfully don't seem to be suffering any other symptoms - my only concern is - in taking Tamoxifen you have to accept that there are side effects which are serious - cervical/ovarian cancer and thrombosis just two which spring to mind. Will leave the questions until September when I meet the surgeon again. But hey - we've survived breast cancer - we can rule the world!!! Good Luck with your future treatment, whatever it may be Maddy xx ... View more

Hi ladies - back after four weeks in Spain to find both good news and bad on this thread. I am sorry to hear that Lisa had died - suppose it happens to us all at some time but I'm quite sure none of us are quite ready to give up yet!!!! Louise - a grandma again - how lucky are you? Jenson is a great name - do I assume that the family follow Formula One? Good Luck for your first rads on the 16th. Dilys - what a relief that someone has finally managed to contact Dyzee - we were all so concerned. I'm sure that all our positive thoughts are winging her way now to help her recover. Hope your first few days at work have gone successfully - I'm sure you have found it a challenge to get back into the routine (and tiring!) Shonagh - Happy Belated Birthday - 40 - wow - I remember that (just!) - I had a day at the local karting track with loads of friends and also a balloon flight over Leicester - think I'd have preferred a trip to see Chicago!!!!! (joking!) I saw it many years ago in Leicester and met the cast afterwards - those lovely McGann brothers (that shows how long ago it was!!!) Haven't seen Ben (hoping to visit on Friday) yet but we've been told he's sitting up, has two teeth and can roll over by himself - he also loves being in the walker we bought before we went on holiday although he tends to go backwards at the moment! Going topless on holiday wasn't a big deal - both breasts have a nice brown tan - I was a little cautious to begin with due to the rads 'damage' and used a high factor sun tan lotion to begin with but it wasn't a problem - I soon reverted to type. I was also careful how I lay to avoid pulling the scar - thankfully I didn't catch anyone giving me sideways glances! They may have been looking at the additional weight I put on over the holiday - half a stone!!!!! - can't understand why because we've been cycling, walking and eating more healthily (ok - we did drink rather more than normal - but Chris has lost weight!!!!) I'm sure it must be the Tamoxifen finally getting it's revenge - still getting the hot flushes ! GGGGRRRRRRRRRR! Must try standing up and walking on the spot when I'm on the computer to up my exercise regime! Lots of love to all of you "Dyzee's BC Babes" Maddy xxxxxxxx ... View more

Thanks for that Liz - I finished rads in January - I did feel that I'd be ok but it's good to know that others are carrying on as before. The weather report for the area we go to in Spain hasn't been too brilliant so far - we're hoping for a rapid improvement ! I've got a variety of high factor lotions just in case. Hope I can control it so I don't end up looking like a patchwork quilt !!! Maddy x ... View more

Louise - I'm sure that after chemo radiotherapy will be a breeze ! Just make sure you moisturise with aqueous cream before and after all treatments and you should be fine. Shonagh - I know exactly what you mean about finding clothes you can't remember - I opened a cupboard the other day .................and closed it very quickly...................the 70s had suddenly sprung back to life ! My stepper is under the stairs - I refuse to admit that I don't use it !!!! We are still doing our long evening walks though - fantastic when the weather is like today - not so great for most of the time in this country though - three years to go and we're off to Catalonia - can't wait. I've texted Dyzee's mobile and emailed her but still no reply - very worrying - let's hope that someone who knows her will be in touch. Fingers crossed that all is well. Ben now has his first tooth - and he knows how to use it - my index finger will never be the same ! He's decidedly "armed and dangerous" Have a good summer Lots of love to all BC Babes Maddy xxxxxx ... View more

Thanks for the advice Tara - but I still have a query - is it ok to sunbathe after radiotherapy treatment - I know the skin is very sensitive to temperature - am I still ok to use high factor cream on that area and continue as before? Thanks, Maddy ... View more

Hi there BC Babes, Sorry I haven't been around for a chat for some time - it's good to see that you are all still keeping this thread going and that your treatments are continuing well. I have been working quite a lot at the museums lately so have not had a lot of time for surfing the internet. Benjamin is now 5months old - how time flies. He's 18lbs, enjoys sitting in his "Bumbo" (whatever happened to supporting them on pillows?) and is "talking scribble". He's also slowly taking pureed vegetables and doesn't seem to spit out too much ! He has visited several times and actually slept in the cot - grandpa was very proud that all his hard work has not gone unrewarded. Louise - how goes it as a grandma. Still not got a splint ! The physio referred me back to my gp as she didn't feel she was helping - I've now got an appointment at the hospital with Orthotics the day before we go on our summer holiday - I only plan to wear it during the night to avoid getting a strange suntan ! It's only been nearly 12 weeks since I was referred ! I have tried to contact Dyzee several times via email but no reply - it may be that she's just exhausted by chemo - but it doesn't bode well that she's so quiet across the web. I did have a mobile number for her on my computer but seem to have lost it - I'm searching hurriedly. Yes - the weather has been better more recently and we have been doing longer walks and gardening - but I can't wait till we move to Spain to get more of the same !!!! Take care all Love Maddy xxxxx ... View more

Oh ladies - I love reading your stories when I return for a top up - sorry I haven't been in touch. I really do feel for those of you who are having chemo, rads or ops - now I'm out the other side it seems like years since I was going through it all ! I have an apology to make 'cos I think I've been wasting your time recently - I went to see the Restructuring team yesterday. Showed both my breasts to the surgeon and he agreed that I can have my left breast reduced to 'match' in three or four months time - HOORAH I hear you say ............................................................................................................... then I drove home..and changed my mind !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He did such a good job explaining the operation and possible associated problems that it gave me second, third and fourth thoughts about the whole process - especially since the operation will result in much more scarring than the two WLE ops did and as a result will probably not match my other breast anyway ! I'm going to wait until after our summer holiday to see if I feel any different - but I think I'm probably NOT going to risk it. I find it hard to believe that he can't just do a WLE type op around my nipple to make it 'match' - the recovery time is much quicker !!!!!!! After watching the Body Shock Elephant Man programme last night I began feeling rather shallow for even considering surgery ! Benjamin is teething (!) and driving mummy and daddy mad waking up screaming in pain - just when he'd got a good nightime routine going. He's also just got a baby bouncer to hang in the doorway which he absolutely loves - can't wait to see him in action at the weekend. Still no sign of a splint!!!! Lots of love to you all, Maddy xxxx ... View more

AAAAAAAAgh !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Easter in the Cotswolds ! The static caravan was great, the site was great, the swimming pool was great, the evening entertainment was great - and then the power went off! We had been out to the pool on Friday afternoon (Ben loved it) and returned to the van at 4pm to discover there was no electricity - instant panic because Ben needs his bottles warm - thankfully Karen had boiled water already in them ready for mixing later and there was enough hot water in the tank to warm them - no showers for anyone though to conserve the hot water for him ! As there was no gas for heating or cooking and the temperature fell very quickly in the van we went out and found a really friendly pub in a nearby village (log fires,light and music!) for an evening meal - unfortunately the power was still off when we returned -so we all slept fully clothed under layers of blankets and duvets! Talk about Third World conditions ! Poor Benjamin - we left him in his car seat (just had to edit this bit because it sounds as if we left him in the car!!!!!) and put that in the cot in their room so as not to disturb him and just added more layers of blankets to keep him warm. He went into mummy and daddy's bed when he woke at 5am but didn't like his bottle because the temperature wasn't right. The power stayed off until 9.15am but then stayed on all day - unfortunately, the next morning, it kept going off again so we all decided to come home because there was no guarantee how long it would stay on (or off.) Oh - and I caught the toe of my boot on the steps leading down from the van, twisted my left foot under me, slipped down three steps and have a beautiful black middle toe which got squashed when I sat back onto the twisted leg !!!!!!! The Good News is - we are all fine - and I'm looking forward to seeing the surgeon on 7th April about the restructuring of my breast. Hope you all had a much better Easter break Lots of love Maddy xxxxx ... View more

Hi BC Babes, Sorry I haven't been in touch - just to let you know I have been thinking of you all. Wrist still hurting (no sign of referral for splint!) - hurt my back last week - lifting shopping out of car without using wrist - went to switch the computer on and couldn't move for the pain!!!!!!!!! then two days ago I went to the hairdresser and fell over the hidden step in their washroom - twisted so I didn't bang my head on the wall, sat on my bottom with a very loud bang, but seem to have cured the back pain!!!!! Foot still hurting but still walking. Caravan at Hoburne Cotswolds (Sth Cerney) this weekend - hope the weather doesn't take the turn for the worse as predicted! - sleeping arrangements sound a little complicated - Benjamin's daddy doesn't feel safe putting him in a room on his own (people could open the window and run off with him) so we'll have to see how big the rooms are to accommodate the sleeping cot (always assuming Benjamin feels like sleeping in it!) Will let you know how things go when I return. Happy Easter to you all Lots of love Maddy xxxxxxx ... View more

Hi Jane, hope the soreness is receding. How wonderful to get the two ops done at the same time - although it must be difficult knowing which parts of your body to move without it hurting! I'm hoping to get a reduction soon - my husband says it makes no difference to him - BUT IT DOES TO ME!!!!! had a really bad day feeling very sorry for myself thinking of all the clothes I can't wear comfortably now so can't wait to get the job done. Best wishes Maddy xxxx ... View more

Hello lovely BC Babes, Sorry I haven't been around for a few days. It's great to read about your adventures with treatment and your busy home and social lives. Long may it last. I think l've got Spring Fever - I've been sorting the back bedroom for our daughter from Dublin who is visiting this weekend - I've been sorting cupboards to fit all the stuff we inherited from her Dundee flat and I use it as an ironing room (so that I can close the door if I don't finish!) Ben's cot was also in there so I've had to move that.(He's visiting on Sunday - hoorah!) I've been spending lots of time on the "ancestry" site tracking our family tree - it's very compulsive - and today I've been scarifying the lawn ! Wrist aching, no sign of splint referral yet. Foot still aching but the doctor says its just a soft tissue injury so we're still walking - I've invested in some insoles with arch support which help - now I only limp after about 2 miles!! Welcome Tricia and Maureen - as you can see from previous messages we are a very friendly and supportive bunch. Good luck and good health to you all Maddy xxxxx ... View more

Hi Ladies, Had a really great day yesterday - Benjamin and his mummy came to visit - he got to sleep in our family cot for a few minutes although his mum was a bit worried about the distance between the bars - he shuffles about a lot and she was worried he would get stuck - strange to think that I slept in it, and so did both our daughters - and we're still here. Shonagh - I felt exactly the same about my armpits whilst having rads - I have always used pink Mum rollette (how dated is that?) and hated not being able to use it - I didn't feel that the wipes and Pit Rok were doing the job at all - I kept visiting the toilets before going into rads just so I could wipe under my arms!!!!! People must have assumed I had a bladder weakness! Louise - hope you haven't read Shonagh's comment about her scab coming off in the bath - it really made me cringe - I know I would have reacted in exactly the same way. Julie - know what you mean about Masterchef - it often has its rewarding moments ! Several years ago we actually knew the winner who came from Newtonhill where my brother in law lives so we watch out of curiosity just to check the standard hasn't slipped !! Does anyone have any information on how Dyzee is ?- she seems to have slipped under the radar recently and it's quite worrying as she initially started this thread. Wishing you all a great Mothering Sunday tomorrow Love to you all Maddy xxxx ... View more

Hi Shonagh, I think you'll find that the underarm feeling is down to the rads - it seems to depend on the specific areas being targeted - as my lymph nodes weren't involved they didn't radiate that area - you should really check it out with the rads staff - they're the experts. Good Luck Love Maddy xxx ... View more

Louise - Congratulations on the "stopping of the leak" - don't pick the scab! (Sorry, that was the mother, grandmother and teacher speaking!) Are you absolutely sure you're not pregnant?????!!!!!!! Sickness and food cravings????!!!! - careful - your new granddaughter could end up with an aunt or uncle younger than them! Now that really would give us something to talk about! Benjamin has been taking his medicine well and has re-established his sleeping pattern so he's only waking once during the night - his mummy and daddy can't believe it - they both feel as if they haven't had any sleep since December. We're all going away to the Cotswolds in a static caravan over Easter weekend - can't wait - I'm trying hard not to get too jealous of our fellow in laws as they are able to see him nearly every day. Went to the physio this morning - she iced my wrist and gave me some more exercises to do - she has discovered she can't refer me for a splint (budget) so has had to get my doctor to refer me (!?!) I don't have to see her again until after Easter and she hopes that I'll have the splint by then so she can see what the pain's like after I've been wearing it. I think I'll just get a stretch bandage for the short term. Hope everyone is keeping well, despite the treatments you are all undertaking. Best wishes Maddy xxxxx ... View more

Hi Spooks, sorry to hear that your surgeon wasn't responsive about a reduction - my surgeon told me that I could consider it even before he did any surgery - at the first consultation when he advised of the two cup size difference. It was after my second op that he suggested, without prompting, a 'tweak' of my right breast " We can do better than that" were his first words on seeing the damage. Sorry also that you won't get anything done until after the summer - I think it's probably wise not to rush into the surgery but know exactly how you feel. Hope we both get what we feel we need before the end of the year. Best wishes Maddy xxxxx ... View more

Hi ladies, hope your treatments are going well and that you are all in 'fine fettle' Wrist still hurting - seeing physio next Tuesday - she had a half-term break so I had exercise homework to do - no improvement though - can't wait to get the splint to stop the movements which cause the pain, but no appointment yet. Think I will have to go to the doctor with my foot now though - we haven't been out for our walks this week as I was limping so much I had to walk sideways with my right foot and developed a big blister on the side of my foot - hope its not bunions ! Hope your leak has finally been plugged Louise and that you don't get too many side effects from the chemo. Shonagh - We too were given a gown to wear for the rads sessions - but as we didn't get changed until we were actually in the room with the machine, and everyone saw you undressing, I ditched it after the first session - lying on your back with both arms above your head they still have to uncover the other half to check the marks so what's the point?!*?! I then felt I had to apologise to every new crew before treatment - even though I know they've seen it all before - but they hadn't seen mine ! I can heartily recommend putting stickers on your breast to break the ice! As half term is different across the counties we don't really get a break from the hordes of children - if they're not on holiday they're at the museum with their school, parents or grandparents (Louise, that will be us in a few years!). But as I'm only employed on a sessional basis I can pick and choose when to work (or not!) Hope none of you were watching last night's Emmerdale. Haven't cried so much in ages - it was possibly quite therapeutic after the past year but I was so pleased that Karen hadn't watched it - Benjamin has not been well for a few days and is now on antibiotics for an ear infection poor little thing - wished we lived nearer so that I could just pop in for the cuddles he needs at the moment. Love to you all Maddy xxxxx ... View more