Breast Cancer Now Forum

I've just signed the petition too.  I am now 3 years post treatment and just had a clear mammogram 🙂 Did have a scare in the autumn but the lump was a fat necrosis from the lipomodelling.  I am trying to get on with life but do read the posts and keep up with news.  Love to all ... View more

Maybe I was lucky - but I had no significant side effects at all.  I work in the hospital and I just popped to radiotherapy, had my treatment, and then went back to work!  I think, on reflection that the skin on the effected side was left a bit shrunken and dimpled but no redness or other problems.  I drove myself to and from work each day (although not a long drive) without any problem.  I would suggest seeing how you feel personally. I have read of bad side effects - especially tiredness - but for me there was nothing really at all.  I managed to work full time with no effort - I was just relieved to get some semblance of normality back into my life!  ... View more

Hi Catherine   I am glad my post helped.  Like you, I felt quite alone and many people thought I was mad to decline treatment.  My oncologist was very helpful in explaining that everyone handles the disease in a different way.  Some ladies throw everything possible at the disease as they feel if they didn't and it returned they wouldn't be able to live with their decision.     I am confident that I can live with my decision - in my head it just made sense.  The medical profession are great ones for following protocols (I know, I've worked with them for years) but they don't always work.  We are human after all, and to me chemo is such a drastic treatment that to undergo it just as a 'precaution ' didn't sit well with me.  Don't get me wrong, if there had been any evidence of spread I would have done anything necessary.   Remember - we have done nothing to 'catch' this disease - it is totally indiscriminate - random.  You can't believe what you read in the press!  Not a day goes by when you don't see a story suggesting that some item of food is to blame - it makes me angry that people are truly led to believe that it is their fault they got cancer.  Don't let it get you down.  Be strong, believe in yourself and trust you made the right decision for YOU 😊 Julie (aka gymnut) ... View more

Hi Catherine   I am sorry you have had to join us on this forum but for what little comfort it may offer I made a similar decision to your own. I was diagnosed in Dec 2013.  1.5cm tumour stage 1, grade 3 with no nodes involved.  I had WLE which showed some DCIS so underwent a second surgery to remove that too.  After much research and lots of discussion with friends (medical and other) decided to decline chemo.  The treatment is harsh and it can bring health problems of its own.  The side effects of undergoing treatment were a certainty whereas the benefits were not.  In my mind there was no evidence the cancer had spread and therefore why subject my body to chemo on the off chance a stray cell or two had moved away from the tumour site?  People put themselves through chemo and still experience a recurrence.  I decided that I could live with a decision to decline and that is exactly what I have done.  No remorse and (I have sworn to myself) and no recriminations.     I am now 2 years post diagnosis.  I have had some reconstruction (lipomodelling) and just had a second clear mammogram.  Although I will never be able to put my diagnosis out of my mind I try not to let it rule my life.  I still enjoy a glass of wine, use my normal toiletries, and eat healthily but without being paranoid about organic etc.  I just intend to make the most of every day.   I feel this terrible disease is indiscriminate - there is so little known about causes ... or cures.  Some people lead exemplary lives and still fall foul yet others break every rule in the book and sail through life with no health issues.    We each have to make our own choices. The medical profession can only advise to a point but at the end of the day it is your life.   My thoughts are very personal to me and will certainly not suit everyone.  You have been brave enough to go with you gut instinct so far ....... I would say stick with it 🙂 X ... View more

Hi JJL I can try and explain how I came to my decision but not everyone will agree with me! I am a fit and healthy 54 year old (53 at the time I was diagnosed). I knew little about TNBC but what I read terrified me. However after many years working with medical professionals ( I work in medical education) I also know that doctors follow protocols and 'one size fits all' is often just the standard course. I have seen first hand how drastic chemotherapy can be and I figured the certainties of putting myself through 5 months of misery were just not worth it for the tiny chance that a cell or two escaped and might be wandering around my bloodstream! I knew there were no nodes involved and I knew I had clear margins. The percentage gain from chemo was (I think) 6% and that just wasn't enough for me. I talked it over with my GP, oncologist, breast care nurses, friends and colleagues and decided to decline. There are no guarantees and even after chemo the dreadful disease could still return. I understand many ladies will grasp at any treatment and in a way I can understand why - at least if you take everything on offer you won't kick yourself and wonder 'could I have done more?' I made my decision as it was what my instinct told me to do and I have to say I had the complete support of every healthcare professional I spoke to. Of course chemo was offered but it is 'belt and braces' in cases like yours and mine and for me the price was too high. I am now 1 year post radiotherapy and just about to have some reconstruction using lipomodelling (on Wednesday) and am telling myself that after I have recovered I will put the whole sorry episode behind me and live each day to the fullest. I don't want to spend the rest of my days watching ever thing I eat, drink or put on my skin. I am going to just get on with my life. ... View more

Hello Ladies   It has been a while since I came on the forum but see there has been lots of activity recently.   I am 54 and was diagnosed with TNBC in Dec 13.  The tumour was small but Grade 3 and no nodes involved.  I had lumpectomy then further surgery to remove a small area of DCIS followed by radiotherapy. I was offered chemo but declined as the percentage gain was small and after lots of discussions with oncologist, GP and breast care nurses I felt the possible benefits of chemo just weren't worth it weighed up against the awful side effects especially given there was no evidence of spread.   I had my first annual check in February and the mammogram was clear.  Next week I am going to have some reconstruction - lipomodelling - to (hopefully) fill in the shrinkage caused by surgery and rads.   Like everyone I have had an up and down year.  Despite being a fit and healthy person everything seems to have 'gone to rats' ..... I've developed a bad back (nothing serious but annoying), terrible mood swings and at one point was convinced I had endometrial cancer but after lots of tests the docs are putting everything down to the sudden stopping of HRT and the menopause!  Although I try not to worry about every little niggle you just can't help it.  I have also lost a good friend and colleague to lymphoma - she was diagnosed at the same time as me and seeing what she went through has almost made me ashamed that so far I have got off lightly (I know that sounds wierd but hope you understand what I mean).   My experience is that TNBC is not widely understood except for us poor souls who have found out about it the hard way.  There have been many advances in breast cancer treatment over the years but we are all in that difficult situation where there is nothing concrete we can do to protect ourselves.  Even the experts do not really know - they just throw the standard treatment at it and hope it works.  When I read Tolliebelle's post it really made me sad - how awful to have a clear mammogram and then 4 months later find out the cancer has returned.     I feel angry sometimes and refuse to get hung up on every theory going.  I try to eat a healthy and varied diet and keep up with the exercise I love however, I won't stop enjoying a glass of wine or switch from my shampoo and shower gel to paraben free varieties in the vague hope it may have some effect!   TNBC is a lottery and we ladies have drawn the short straw.    I wish all you all well in your treatment.   Julie    ... View more

Hi Sue I've had my radiotherapy now - and coped fine, couple of weepy days and a very short fuse for a while lol x now trying to put it behind me and get on with life. Some days I worry but I suppose that will never go away. Glad to hear you are getting through your treatment - as you say, it does get easier once you come to terms with the diagnosis and allow yourself to be steered by the professionals x ... View more

Oh jinny, how I feel for you x nothing anyone can say right now will help much but you have to hang on in there. The healthcare professionals know what they are doing - they will come up with a treatment plan just for you - try not to worry about what has happened to anyone else and put your trust in them x I was diagnosed TNBC in December and now post 2 x surgery and RT. I declined chemo as the percentage gain for me personally was very small. It was my decision but I was supported by my oncologist, GP and surgeon. All a little scary but I'm trying to move on and enjoy life - you will be able to do the same - try and be positive .... So hard to do, but I promise you will get through this xx are there any ladies locally who can support you? ... View more

Hello Ladies   Just to add to everyone's confusion!!  I was diagnosed with TNBC, Stage 1, Grade 3 with no nodes involved in December 2013.  I had a WLE in January where they removed a 1.3cm tumour and also discovered some DCIS.  The margins weren't clear enough of DCIS at first op so had a second 2 weeks later and surgeon was happy everything had been removed.  I was offered chemo but it was only going to increase my chances by 2.9% - and for me that just wasn't enough to put myself through the treatment.  I had lengthy discussions with my surgeon, oncologist, GP and breast care nurse and they were all very supportive - they certainly didn't 'push' chemo.  In fact my oncologist said they usually only offer it if the chances are >4%.  The one thing I have learnt from this horrible process is that EVERYONE is different.  Every treatment plan is different and there is just no 'one size fits all' even when it would appear that you have the same cancer type/situation to others.   I am a fit and healthy 53 year old no family history or other risk factors.   I had the usual 3 weeks of RT and now I am trying to put the whole thing out of my mind and get on with life.  My oncologist discharged me last week with the advice "live life to the full, don't worry about every little ache and pain but if something unusual for you personally persists for more than 2 weeks, see your GP".  I intend to try and do this.    If it comes back, I will deal with it then.  I know of ladies who have spent months going through chemo and the cancer has still returned - there are no guarantees.  My decision has been very personal to me so this is definitely NOT advice to anyone else, but I figured that chemo = 6 months of feeling pretty bad so to put myself through it 'just in case' was not something I was not prepared to do.  I did worry a lot initially as almost every other TNBC lady I have come across had chemo and I was frightened I was being stupid refusing, but all the health care professionals I have spoken to agreed with my decision - drastic treatment for so little gain is a risk in itself.   Good luck to you all x keep strong         ... View more

Hi Kat I am in a similar position to you - diagnosed on 24 Dec, lumpectomy on 14 Jan with clear margins and no nodes plus further surgery on 28 Jan to remove an area of DCIS. Final results tomorrow. I too have an aggressive form of triple negative cancer (stage 1 but grade 3) and chemo is really my only option. I am terrified but prepared for anything so long as the benefits are there. Like you I just want to know where I am heading! The last couple of weeks in limbo have been surreal. Are you triple negative? ... View more

Hello Gaby I was diagnosed on Christmas Eve and faced the dilemma of whether to tell family or not. My daughter was home from uni for Christmas and my son is in Australia with his girlfriend on a working holiday. BIG dilemma! I held off telling anyone over the holiday period but told my daughter before she left to return to uni. It was hard, but I tried to remain positive and just explain the facts (as much as I know them). I still wasn't sure what to tell my 26 year old son as he is so far away and the last thing I wanted was to worry him so much he felt he would need to come home. I discussed at length with my daughter and she was certain it was right to tell him and that is what I did via 'FaceTime' . It was not the easiest conversation but I am really pleased I decided to. I am still not sure what the future holds as I had to have further surgery to remove an area of DCIS but final results and treatment plan tomorrow (I hope!) I am expecting to be advised to have chemo as despite being stage 1 I am triple negative so there are no other options. I know both my son and daughter are anxious about the future and will be awaiting the results and my decision re treatment. I am so glad I told them both at the start as they have now had a little time to come to terms with everything - as I have. The whole thing is a nightmare - the scariest time of my life with no doubt but it does help knowing that we are not alone ! Good luck with the RMI and treatment x ... View more

Hello Sue Thank you for your reply. I can empathise completely with you regards trying to keep calm and be brave for everyone when inside you are terrified. All my family live/work away so i only have to be brave during phone calls! I also have kidney problems - was diagnosed with stage 3 chronic kidney disease when I started HRT. I had no idea my kidney function was poor and at the moment I am not on treatment - just annual follow up to make sure function isn't deteriorating. One of the things that scares me most about chemo is that it may make my kidneys worse and I really don't want to end up on dialysis for the rest of my days, especially for a small percentage gain from chemo. Oh we'll, guess I will just have to wait for the experts to pass their opinion. How did you cope with your first chemo? You sound very positive x julie (aka gymnut) x ... View more

Hi Joanne Thank you for your reply - it's comforting to know there are other people out there facing the same thing. You are right, I will certainly wait for full advice from my oncologist before making decisions. I have stopped reading too - too much scary stuff and I think I have enough knowledge now to ask probing questions without needing to know more. I am not normally a fan of bearing may soul on line - even Facebook I only used for keeping in touch with family overseas - so just joining this forum is a big step. I hope my percentages make it an easy choice for me - I can understand why your opted for treatment and wish you all the luck in the world 🙂 x ... View more

Hi Joanne Thank you for your reply - you have no idea how comforting it is to hear from someone in the same position. Your advice is sensible and I will certainly wait to hear all the options before making a decision. I have also stopped reading - it is scary! If I find myself with figures as positive as yours I will certainly opt for treatment but at the moment using online tools chemo will only add about 6% which seems such a small increase for such a radical treatment. I hope your get a great result xxxx ... View more

Hi, I'm completely new to this - both in terms of actually joining the forum and of having TNBC! I was diagnosed on Christmas Eve - not was I was hoping from Santa! Had lumpectomy to remove a 1.5cm stage 1 grade 3 tumour with no nodal involvement. Just had more surgery in same breast to remove a wider margin of DCIS. Now just waiting for final results. What I've read so far has scared me silly - it all sounds terribly negative (pardon the pun). Was expecting surgery, rads and hormone treatment and now realise that chemo is the only thing on offer. Not met the onc yet so don't have specific data but feel reluctant to put myself through chemo with such small benefits when there is every likelihood it could return anyway. Grateful to hear from others with TNBC as I feel really alone. I know many ER+ suffers but no one who is TNBC. I am a young 53 - fit and healthy (at least I thought I was) who lives for my gym classes, especially dance. I am really interested to hear how you decided whether or not to have chemo - the decision is SOoo huge and terrifying! ... View more