Breast Cancer Now Forum

Pinkbow47 that's normal as far as I've been told. They have to stretch the nerves when removing the lymph's and sometime it damages them, I've been told that it might come back completely, but it could take time e.g years, but it's def better than it was post surgery. (I'm a year since surgery) I've not taken anything or been recommended to take anything - Sorry can't offer more help, just reassurance that it's fairly normal to have altered sensation. ... View more

Hi Kathy,   That isn't great. I'd still try BCC too, see if they can put you in touch with someone, you never know... You shouldn't have to go through this alone and BCC have one to one peer support so there might be someone in a similar situation to you. I'm sorry I can't be of more support, I had cancer so can't imagine what you went through, being in limbo and I am in awe of you making such a decision, sometimes it's easier to have the doctor say you have to have this operation to survive... Rather than this might happen or you could. I hope the next few months pass quickly for you and that you get the support you need.     Wishing you a speedy recovery.    Lx ... View more

Thanks LadyKarla, I took back control of my life on Friday and I feel a much happier this week, it's amazing what a couple of days and chatting with like minded people who understand you can do! I even managed a trip to the local swimming pool - it felt ace and something I can't wait to do again very soon!   I tried my doctor last week and they were reluctant to give me any tablets, told me to go and speak to my boss... Which to be fair I did do. But I felt they weren't very helpful with regards to my mood. Luckily I've got it back on track for now, but it the fog returns I will definitely go and see another doctor.   Onwards and upwards as they say!   x ... View more

Anytime ladies, sometimes you just need to get it all out and stop putting the 'I'm so happy cause I'm meant to be' face on. KAM80 with the reconstruction, do what's right for you, that's all that matters.    Survivor78 - It's now all about the work/life balance for me, I hope you do take some of your advice and find a balance too.    You guys should def meet up and go to the groups. Strength in numbers and all that! Please let me know how you get on x .  ... View more

Ladies, just wanted to write and thank you all for your support yesterday. Today I have had a tear free happy day! The first in a couple of weeks. I made a big decision today and I have taken up the offer of a part-time job with a friend and plan to tell my boss I'm leaving on Monday (much sooner than he or I expected). My friend owns her own company had been saying to me for months that she could offer me part-time work, today I swallowed my pride, accepted that it's OK to have a life and I met with her and discussed the possibility of starting with her. I start a week on Monday enough time to finish up at my current place and pull together my handover.   I'm going to work part-time for her while I look for a new full time job in the same sector but a different role. Her offices are much closer to my house which means no more commuting in to city centre and more opportunity to actually get to the gym and shift the two stone I gained during chemo. I feel like such a weight has been lifted and that I'm actually doing something to help myself.    I've accepted that it's OK to want a life work balance and that it doesn't mean that I'm not ambitious, it's just that I've got a different type of ambition now. I like, some of you, live in fear that the cancer might come back, and I've made the decision that I'm not prepared to spend anymore of my life (however long or short it may be) apologising or feeling bad about myself for wanting to work less and enjoy more.  I'm not naive enough to think that this will be the end of my dark days completely, I'm sure they will still be there lurking when I least expect them, but at least for today I feel more positive than I have done since I stopped my hospital treatment.   KAM80 gutted that your not closer and can't attend, but please, please sign up for one in your area, I'll write back and let you know how I get on after the 8th March.    Think it's great that you are going to the awareness evening, good for you! I hope you get the support and answers to your concerns there and make the right decision for you. Please keep us posted how you get on.    As for the stress - make sure you keep it at bay, work to live and take time for yourself. I'm learning slowly the hard way.    Please stay in touch and I wish you all every happiness - goodness knows we deserve it after what we've gone through.    Lx        ... View more

Helenbythesea that's awful, do you have a HR department? I don't and that's why I have no support or anyone to protect me. MacMillan have loads of info and they even have a little green box called something like 'managing cancer in the workplace' to give to smaller employers who don't have the resource larger organisations have - you should try and get your hands on it.    Do you mind if I ask when you finished treatment and what treatment you had? I had two sugeries, WLI and node full clearance, then further margin, 6 months of chemo and a month of radio. I finished in Sept and went back to work in october. But it's only now the emtional impact of what's just happened to me that's it me.    You should take a copy of this too!  http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/$FILE/article3.pdf?openElement ... View more

booo I'm in Scotland, near Edinburgh, I've just replied to you on the angry thread. I have had a really bad couple of weeks and was in need of some empathy this afternoon. I also spoke to someone on the services line at BCC, you should try them too, tell them how your feeling and they'll give you information about the services and support groups in your area. x ... View more

Lizalou, thank you so much for such a positive and inspirational story. Congratulations on your miracle boy! It's nice to hear such a positive story. I did IVF in between surgeries and chemo, but hope that if IVF doesn't prove successful that we will be able to adopt (although I've not looked in to the situation having had cancer and 55% chance of it coming back yet... I've got enough stress!).   Surviver78 my work situation is complicated as I was made redundant last year and was taken on by my previous boss in a freelance capacity... If I'm honest my hearts not in the job anymore and I feel like it's time for a change, I just hope the laws which are in place protect me when I apply for new roles. I feel I've changed so much as a result of my diagnosis and I don't want to work 60+ hours a week which is what is expected in my line of work.    KAM80 I'm attending the Scottish forum on 7/8th of March in Edinburgh. I would really encourage you to sign up to one in your area, I went to a focus group a few months ago run by BCC (to provide feedback on how we as young women are treated and the level of support we are given) it was good to speak with like minded women who were experiencing similar issues to me. If you go into the Younger women and families pages there's a thread for peeps who are concerned about signing up. You should have a look.    Agree at what you are saying about no matter what age you go through this makes it any easier, but as we both agree being younger brings additional pressures or stresses.  I wouldn't wish this diagnosis on my worst enemy. Chemo almost killed me last year, I've never been so ill in my life and as for the emotional scars it's left, nothing could have prepared me for this!   I can totally understand being terrified by the op, and understand your concerns. But speak to them and see if they can put you in touch with other patients to ask the questions you might have?    Good Luck Ladies, keep in touch.    Lx ... View more

Thanks June,  I spoke to someon on the helpline and have got signed up for moving forward and I'm booked in to the young womens forum in a couple of weeks - it can't come quick enough! ... View more

Survivor 78, I've replied to KAM 80, but the same goes. I do think being younger adds, my mother in law was diagnosed 3 months before me, she had surgery and radio, and was retired and owned her own house, she's late 60's. She didn't need to worry about how she would pay her mortgage, whether a family would ever be possible, how she was going to go back to work, whether she'll ever get a mortgage again, how future employers will react.... Of course she lives in the same fear that the cancer might come back... but she doesn't share the same pressures I feel. Being younger brings its own issues. x  ... View more

KAM 80, reading your story I can identify massively. I was diagnosed last Jan, 11 months before my wedding and we had planned to have a family this year. Cancer put paid to that plan when I had to undergo surgery chemotherapy and radio. I decided not to take tamoxifen as I was a borderline case for it, so I can't sypthise about the tamoxifen, but my mood swings, hot flashes and weight gain have been awful - as I'm now post meanupasual.    I feel the same dispair and anger your feeling about your life being tipped upside down, only I describe mine as someone took a wrecking ball last year smashed it right through my life and now I'm sitting in the middle of the debrie trying to work out who I am, where I'm going in life and what I'm going to do.... My friends were great while I was 'sick' but peoples perceptions are difficult to manage (I find) they think because youve been discharged your hairs coming back and your back at work your well. They don't realise the scars your experiencing mentally have just shown themselves and so they continue on with their lives (as they should, don't get me wrong I'm not saying they should hault everything for me) not realising the daily pain and suffering you are going through.    I know the feeling about friends having children, my best friend had a baby while I was going on chemo and kept making comments about 'by the time I have children' as if this is a lifestyle choice I've chosen... We already have a dog and I do find him a massive comfort as sometimes the fact I have to walk him forces me to get out of my PJ's and take him out.    People don't get that I've just fought tooth and nail for my life. I've gone back to work and I have no motivation for it, I work in a fast paced, client driven environment working to deadlines - everyone wants a peice of me and I've simply got nothing left to give. Yesterday it came to a head and I sat down with my boss and we both agreed this isn't working. I've decided to look for another role which doesn't require so much of my life and that I don't have to work 60+ hours a week. And while part of me felt relief the other part of me felt like a failure, I was succesful and career driven before Cancer, now I don't seem to have drive for much.    With regards to the ache and pain. I totally understand that. I've had some bad pain in my ribs before Christmas and I was terrified it had spread to my bones, my nurse kept trying to tell me it was nothing and then the anger took over and I demanded an appointment at the breast unit. What gets me is once I'd had the surgery, chemo and radio no-ones done any scans to check that we definetely got it all. If one more nurse says to me, 'your cancer free' I will scream. My response to that was YOU don't know that because I've not had any scans and I've not had my first of my 6 month scans. I also don't understand why they don't scan you post treatment, espeically in my case because the cancer had start to spread and was in 3 of my lymphnodes, I was told that chemo was for the rouge cells, well what if a rouge cell wasn't obliterated by the chemo? I've to just wait and see???   With regards to your appearance - I'm with you on that too,  I put on 2 stone (I just got my wedding pics back 2 stone heavier, most brides loose weight not me). I can't loose anything and am knowingly comfort eating when the depression takes hold, so not even trying to help myself in that department. My hair is less than an inch in length and I have scars under my arms and across my chest (I didnt need a full mastectomy) and now have Lymphodema starting in my arm, my hand is so fat I struggle to hold my pen to write as a result of the swelling.   I wondered have you thought about reconstruction? I don't know if it would help you any? But you are allowed to change your mind and can have it done even a year after, my aunt did it this way.  Also there are other hormone drugs you could potentially try? Have you spoken to your oncologist about the side effects? Have you been to the moving on sessions run by breast cancer care? I've signed up but can't get in till May. I've also registered on the Young womens forum and hoping to meet some like minded women my own age who maybe understand a bit more about what I'm going through.  ... View more

Hi Mrs Angry,    After deciding to leave my job this week (seemingly I'm not coping) I can quite believe the councilling could help. I have signed up with BBC moving forward (although its not till May) requested the folder and going into see MacMillan next week to talk. Good to hear your in a better place and I hope that you consider to find the strength you need to move on and lead a happier life. x  ... View more

It seems this is also a common theme. I went back to work in October (I finished treatment in Aug) on a phased return and after a stressful couple of weeks followed by an even more stressful conversation with my boss have decided to make a move away from my company and start looking for a new job in the same sector but different function.    My wanting a work/life balance has come across as I can't cope in the 'stressy' environment... people despite how many 'laws' don't understand what we have been through. My self-esteem is at an all time low, 32, two stone heavier, 1inch of hair (which was previously long), dodgy looking eyebrows and a body which went to war (surgery, chemo and radio). I feel bad about myself every day without going in to a job which makes me feel like i'm going crazy/having a breakdown and can't cope...   Glad I got the courage to have the meeting with him after 3 days in tears but now worried that the pressure to find something else is really on!      ... View more

Mary, I'm being treated for the onset of Lymphoedema and I'm paying to see a specialist privately (NHS won't treat me as my builds at 12% and their criteria is 20%) she has explained that the aircraft can cause the lymphodema to become worse, the way she described it to me is like a water bottle when you go in the air. During decent the pressure in the bottle changes, and similarly the same could happen in your arm, that's why it's important to wear your compression garment while traveling and her advice was to have a cool shower on arriving at my destination (although I'm off to Iceland so I'm not sure how that will be!) also her advise was that if going to a hot country to use insect repellent all the time as the slightest bite could make the lymphoedema worse and that you should get a precautionary set of anti-biotic from your GP before traveling and a letter so that you can start treatment should you get bitten/scratch as the risks of celuitus (don't know if I've spelt that correctly) is higher in lymphodema patients. Hope that helps, there doesn't seem to be a lot of education out their once your at risk.    Can't help on the tamoxifen as don't take it but I would imagine the risk of dvt is possibly higher because blood clots is one of the side effects of tamoxifen (one of reasons I opted out of taking it) and your oncologist should be able to advise you.   Hope this helps!   ... View more

Leo I am now 6 months out of 'treatment', I say it like that because I don't think I've dealt with the emotional and mental implication of what I've just gone throught. Don't aplogise about 'moaning', your not, everything everyone is going through is relevant. No-one has the monopoly over how you should feel based on your treatment. I've called BBC this morning and am booked in on the Young Women's Forum, in the hope to meet other like minded people who will know what I'm going through. You should see if they have services available in your area. Good luck x ... View more

I Steph, I'm booked in and have put holidays in the diary, I have had really awful couple of weeks post treatment finishing and returning to work and looking forward to meeting other ladies and making new friends who might understand how I'm feeling. x ... View more

Thanks ladies, my husband wants me to go back to Maggie's, they helped when I was first diagnosed... I'm 32 and all my friends are having children or going on fantastic holidays... I think this is where the frustrations lie. My life, for the time being, is on hold. I'm definitely going to go down the support group route, if it doesn't get any better, but it is good to hear that it does get easier in time. Thank you x ... View more

I can sympathise with the PJs bit, although my boss prob wouldn't have been too impressed at me turning up to work in them... I was forced into buying new stuff as I had to go back to work. Believe me I had no desire to shop and when I did it wasn't a happy experience. Mainly because like you I didn't recognise the person staring back in the mirror. It's great that you've got some support and taken comfort from the friends you've made here... And the depression isn't as black. I'm on the mind I'll try without drugs for now but if things don't improve I fully intend on going to the gp for help. Mainly because I don't need to add sectioned to my horrific year... I think it's still important to say to people just because the treatment has ended doesn't mean the mental scars have. I'm coming to terms with the fact bc has changed me, and I won't ever be the person I was before, right now I'm just figuring out who this new person is x ... View more

I'm being assessed for lymphadema by the physio at my unit and they game me a sheet on the mld massage. There advice to me was not to dry body brush as this could make the situation worse, instead light sweeping movements are best and you need to move the fluid in sections so start from top of shoulder not fingers. If you don't know what your doing can cause worse damage so would advise you to see a professional. Your breast unit should be able to refer you to a specialist. I find the mld massage does help and would recommend it providing its a professional doing it. Hope this helps. ... View more