Breast Cancer Now Forum

Charys · ‎24-07-2020

Absolutely Suzy ! I so agree with everything you have written. My breast cancer nurse once said to me, when I was wrestling with a decision right at the start of my treatment, that stats and opinions of medics are good, research very helpful, information gathering important, BUT a psychological 'comfort' about a decision on the part of the individual is most important. Sometimes you need to search your heart and head (and life experiences you mentioned) for what is right for you, and not feel pressure or guilt. Nobody wants to have regrets, or look back on something and think they did the wrong thing, but ultimately we are all individuals and are 'in charge' of our own bodies and know ourselves like nobody else can. Treatments and surgeries are a choice, they are a choice that I would hope everybody takes if they are relevant to them based on the advice of the professionals, but nobody has to. Nobody is right and nobody is wrong - everyone is just as you say - different. Hi Tili ! 😘

Charys · ‎24-07-2020

My concern is that, for me, there has been little interest by my medical team in diet, exercise, toxins and stress. Yes, and that was my feeling also - I had no advice on any of these matters at all, and mental health as a problem is picked up by the charities (like this one). all the research shows it extends survival and it isn’t really optional in any scientific sense The research isn't that simple, in terms of large scale stats, yes of course it makes a big difference. For some individuals, quite a percentage (I think 20 percent) it makes no difference at all. This is the point I was making about tailoring hormone medication in the future to those for whom it is effective, as at the moment there is no way of knowing who it helps and who it doesn't. There are women out there who religiously take the likes of tamoxifen and have recurrences, there are those who take it and don't get recurrence, there are those who don't take it and get no recurrence and those who don't take it and get recurrence. There are no markers to show which women it is effective for. It is because the medics don't know who it will and does actually help that everyone is urged to try it/use it for the timescale prescribed.

Charys · ‎22-07-2020

I would agree Susan - I have always urged anyone, despite my own experience, to try it and 'give it their best shot' (just as I did). There are loads and loads of people who don't even have once side effect, and those for whom side effects can be managed easily. Statistically of course it has made a big difference to recurrence, but for a few women at a trully terrible price. It is used as a 'one size fits all' medication, and I'm hoping that in the future there will be a way for subtle differences to be made to this type of hormonal therapy based on research into those who it will actually help.

Charys · ‎22-07-2020

Hiyer Tili, I do feel for you, its a horrible situation to be in - truly awful. My experience was over 4 years ago now, but I still remember it like yesterday and all the fears and terrors from taking it or not taking it. It took me 6 months to feel as if I had recovered from the tamoxifen experience. You are in such a vulnerable place, I understand, and don't know which way to turn or what to do, devil and deep blue sea. Sometimes I think it really helps to find a medical professional with a really good knowledge and empathy with mental health issues. I first was referred whilst on tamoxifen by my GP to a locum oncologist, who told me to try evening primrose (!!!) and said it was life or death for me to take it or not take it (!!!), he literally had no idea how severe the mental changes were and how physically ill I was. (I had a list as long as my arm of physical changes but they were nothing compared to my mood and collapse of my mental health,). My second referral was to a doctor who recognised the severity of the problem and had an understanding that the women aren't just about their bodies, but their minds and wellbeing. I was advised at this point that the only way I could begin tamoxifen again was as an inpatient in a psychi unti. I would urge you to talk with everyone you can during the process of making decisions, there are a range of people from other patients (users on here) to medical professionals and nurses - all of whom have experiences and opinions. Some of those people might have suggestions for possible different treatment regimes, or other changes that made a difference to their ability to take tamoxifen. There is also the helpline number above, where I'm sure there will be people who can help you to process the issue you are having. Obviously, as this is your second cancer there is extra importance attached to your decision, but please remember it is always YOUR decision and should be made without pressure or feelings of guilt, but based on good amounts of consideration and information. I personally found that once the active treatment was done and I was discharged, there was a lack of any real medical interest - and I was going through a hugely worse time than during surgery and radiotherapy. Side-effects, they are to be expected for many and for many they disappear over the following weeks, but there is a minority and that minority really really struggle. The trouble is nobody can tell you the 'risk' with taking it or not, there are no guarantees or certainities that can be applied. The majority of women want to feel ok and be able to take this medication, I am sure, but there needs to be support for those who find it a challenge and sometimes even more than a challenge and unbearable.

Charys · ‎16-07-2020

Hiyer Katie, You could ring the helpline number at the top of the website and I'm sure somebody would be able to talk to you about your feelings about hormone therapy. I am presuming that you have a breast cancer nurse, GP and surgeon who you could also speak to about the issue ?

Charys · ‎16-07-2020

Hiyer Susan, We aren't just talking a few side effects here on my part, my life wasn't worth living - I was removed from them by my oncologist. Their exact words were 'you won't be here to have any life if you carry on taking them for any time longer'. I think there is an underestimation about how ill some people can be, and believe me I wish it had been possible to continue. Unfortunately, I had previously had a hormonal post natal psychosis, and was close to being that way again. A few side effects would have been a joy compared to my experience. I entirely encourage anyone and everyone to try them and stick with them if at all possible, but for some it isn't possible and that is the minority luckily. I actually personally felt dreadful stopping them, and very scared and vulnerable - but the balance of what needed to be done was very obvious. You say we are not 'cured' without them, well, to be honest - we aren't 'cured' with them either. They are only effective I believe for 20 percent of those who take them, the trouble is we will never know which 20 percent they are effective for and which they are not. There is literally no way of knowing. Ultimately, we are all individuals, who have to feel 'happy' with our personal life choices - 'happy' isn't the right word - we all need to feel psychologically comfortable with the decisions we make. Mine was the right one.

Charys · ‎15-07-2020

Hiyer Maria, Its a horrible, awfully frightening time waiting for that breast clinic appointment. I don't know what type of clinic you are going to but you would certainly expect a mammogram/and or ultrasound of the area. Many clinics start with a consultant talking with you and giving you a physical examination, then the mammo/ultrasound follows, but this does vary from area to area and hospital to hospital depending on their policies. They may be able to tell you there and then their feelings about if what you have is benign or not, but if the mass you have found is needing a biopsy then that can also often be done on that same visit if it is a a 'one-stop clinic' set-up. They don't take any chances with anything that is even slightly suspicious - so unless they are 100 percent certain from the images they have taken that its a benign lump then a biopsy can be done quickly with a local anaesthetic injection (in most cases). Whatever you find out from your visit, even if you need treatment, you can rest assured that there are loads and loads of us on here who are many years further down the line to you and doing just fine and dandy (over 4 years in my case). I hope you find out tomorrow that there is nothing to be concerned about, but if you don't and need a biopsy do come back and reply on here or phone the number above left by Bernard. The ladies on the phone helpline are awesome and have 'been there'! We are all here to help and support. x

Charys · ‎13-02-2020

Lovely Lady H, I know I've already replied to you via instant messaging, but just wanted to come on here and document my deep and heartfelt condolences to you. The loss of your Colin must be something that is profoundly painful and shocking right now, I know the love you had for each other and the ways you cared for each other and completed each others' lives. I'm so terribly sorry to read this news, and I can only hope that in the time ahead you find some peace and happiness in your memories and joy in the love you shared. I can't imagine how lost you are feeling, and don't really have words to express how sad I feel for you. Please take care xx

Charys · ‎18-10-2019

Hiyer Drida, The 'can I be cured' is one that is of course incredibly hard to answer, and the word isn't used nowadays as we all know there are no absolute guarantees for the future. The medics now prefer the term 'cancer free' or 'No Evidence of Disease'. Can you be NED, yes of course you can, and there are plenty here, many thousands before you who have had a similar set of diagnoses (including the lymph node involvement) and gone on to be cancer free after treatments. I'm no medic, and I would honestly recommend you putting these questions to your breast cancer nurse, or surgeon/oncologist. They should be able to talk you through in detail the stats and their judgement on your likelihood of recurrence following the full treatment regime. I do think though, you should have every hope with modern, effective treatment, experts with a very good understanding of bc and how it responds, that you should expect to be cancer free in the future (as are the majority of women).

Charys · ‎18-10-2019

Your post very succinctly described my own devastating response to tamoxifen in the summer of 2015. I can relate to everything you said, my thoughts and feelings about the drug were identical (though a different drug) and can say that you won't regret the decision you have made. At the end of the day my choice was 'easy' too, there really wasn't a choice, as I believe if I'd have continued I wouldn't have been around to live a life - with or without cancer. Best Wishes to you.

Charys · ‎16-10-2019

OK, firstly, if and when the nurses respond and the thread gets closed, then please feel free to message me. As I said earlier I had the most awful response to tamoxifen (in June 2016), I still have listed the symptoms I was getting at the time and they are too numerous to list here, 50 percent were physical but the other 50 percent were devastating mental health changes. I had always been sensitive to hormone changes, and infact had had postnatal psychosis 20 years earlier, but nothing prepared me for the erratic, deep despairing, 'psychotic' mood that tamoxifen caused. After 6 weeks I couldn't take another tablet as I had gradually slipped deeply into big mental health issues, the fear of the cancer returning was much easier to deal with than the lack of quality of life I was experiencing on tamo. I honestly believe that taking tamoxifen was going to result in me losing my life, I was having the most horrific thoughts and it was absolute hell and thats an understatement. I gave the list to my consultant the following week of all my spiralling mental and physical health problems, and she told me I was not to take another again UNLESS I wanted to have a break and try again with daily intervention from mental health services !!! (and no, I hadn't seen anyone from mental health services since my postnatal hormonal problems 20 years earlier) It appeared that I had a sudden and complete oestrogen deprivation systemic problem caused by the med. I want you to know that yes, tamo can cause the things you are talking about, I know because I've been there. After stopping them, which wasn't a hard to descision to make, it took me a few months for my mood and cycle to fully stabilise, but I can honestly say that it was a matter of 24 - 48 hours after stopping that already I felt an improvement. There were a few other medics who made noises about how important it was to carry on taking it, to try evening primrose oil LOL and other gems, but I felt like I couldn't get through another day as I was. ANyway, I want you to know that you can take a break from them, you can stop them today if you feel beyond dreadful, you don't need to persist with something that is making you so mentally unwell. It is your life and your choice, and if life feels so awful on tamo then it needs rethinking if you can continue. Let us know how you get on with your GP tomorrow, and I am more than happy to talk via pm or on this thread or any other you start about it. Please though, don't despair and ask for help or talk to anyone you can at this time, it isn't the 'real you' feeling like this, it is due to chemical/hormonal changes that you are very sensitive to. These changes can and will reverse and I think its important you lay it all out for your doctor tomorrow. I know how you are feeling and behaving, and I will be here to listen if you need help. (By the way I have been 'C' free for those 3 years since stopping it.)

Charys · ‎16-10-2019

Hiyer Muldoon, I am the person Jill was referring to (thanks for tipping me off Jill!). Over three years ago I had the WORST time ever for the 6 weeks that I was on tamoxifen. I had what the consultant referred to as an 'extreme and rare' response to it and by the way you are talking I see you are experiencing many of the same responses. I will be back very shortly (if you are reading now), I just want to go back and read this thread in full.....

Charys · ‎15-07-2019

Oh Lee! Luckily I read your 'everything is alright after all post' first, and then went back and saw that you'd had the suspicious area and biopsy. Oh my word, I can FEEL your relief and happiness, fantastic news.

Charys · ‎15-07-2019

Gemmy, there is no right or wrong answer to this - all you can do is do what your gut and heart tell you and do what feels right for you. Unfortunately, although sometimes we want someone to give us instructions on what to do for the best, there is no 'best' and it is what feels right for the individual. At times, for many of us through treatment, after diagnosis, there are times where the decisions are left to us. I did cancel my holiday 3 years ago as it was when treatment was needed and I personally knew there was no chance of me enjoying it to its full potential with my mind on the BC diagnosis, but you are a different person and have different views and personality. We ended up doing the same holiday 12 months later 🐵 I also had to make decisions on chemo myself (as was borderline and there was no definitive right or wrong on it) and though it was tough my BCN advised that my decisions needed to be psychological ones - take advice, do some research if you like, but ultimately do what you feel in the future you can easily 'live with'. By that I mean, would you regret choosing the holiday over starting treatment? If you wouldn't, then go for the holiday.

Charys · ‎15-07-2019

Hiyer, The clinics are usually run by the 'breast surgeon', they are generally leading the ultrasounds, mammograms and the process IF there were extra tests needed. They are usually also the first ones to do a manual examination, to determine benign and breast cancer issues. I think your GP has just used a different terminology; most people DO see the breast surgeon as the one and only person they see at the clinic. Many are given the 'all clear' at this point by the surgeon, but if there were a different outcome and treatment were needed the breast surgeon would also lead/request all following parts of the process.

Charys · ‎15-05-2019

Well done Gaby, one done.....tick it off ! Welcome Fiona.....30th May...Oooo methinks, the same as me, you are going to have the warm weather over your RT period. It has positives and negatives - firstly you can just walk around with no top on lol but it is a bit urrgy when hot and your chest is burning. Can I make another recommendation, that was made to me, to you both? The burning isn't just the skin, it is deep inside, it doesn't feel like sunburn more of a 'cooking feeling' (sorry lol). So, lying down with a damp cool flannel across the boob in the evening, and a fan blowing at it, really helps. Pick up the flannel at regular intervals, waft it in the fan breeze, turn it and repeat....

Charys · ‎14-05-2019

Yes, it is true, EARLY detection ! When I first came on here 3 years ago I said the same as you to a lady (Jobey68) who helped me. 'I wish I was at the stage where I could help and reassure others', I didn't actually think that I would be at that stage ever as the mental hole felt so hopeless. She said 'you will be'. I say the same to you ....you WILL get to the stage where you can look back and help others.

Charys · ‎13-05-2019

I think it would be surprising to not be terrified to be honest ! I've just had my third one post treatment, and even then I was feeling the same awful feelings. which came flooding back. I've yet to meet one person who doesn't feel as you do right now. I've copied a link to another recent thread about this subject, as reading some of the replies there might help you... https://forum.breastcancercare.org.uk/t5/Coping-with-fear-and-anxiety/First-mammogram-after-treatment/td-p/1286081 From my own experience I know that there is very little anyone can say that will take that fear away for you, 'scanxiety' for those who have had a diagnosis already is a horrible place to be, and the thought of having to 'go through it all again' feels almost unbearable. Like you, logically, I know that it is important for early detection and successful treatment - but also wanting to run in the opposite direction feels like an option. All you can do is tell yourself that the chances are, as for the majority, that all is well and just get through it the best you can.

Charys · ‎13-05-2019

Hiyer, I see you've had a few really useful replies, so I will concentrate on the question you ask about 'how did you find rads'? I had rads in May and June 2016. Oddly, and I don't think I'm alone in this, I found it a very positive and almost enjoyable experience. I think it was the release of some tension from the previous surgery and diagnosis, and also the fact that I felt the rads were very positive action in getting rid of any possible future problem. I don't mean that the effects of it were enjoyable, as yep I had a big red square and hot burning tissue, a weepy crunchy nipple and needed some steroid cream, also some glitchy nerve pain and a few other assorted symptoms that one might expect....BUT....the team were so welcoming, and seeing them daily and having that human interaction with other people having treatment felt positive. I honestly laughed through much of my treatment having rads. I felt tried towards the end, but drove myself there and back each day just fine, some people I know carried on working. It is frightening when they show you that sheet , which you sign, of possible side-effects....but three years on, bar no hairs under my right arm, everything has slowly slowly resolved. After rads I felt emotionally strange, sort of cast to the wind and I genuinely missed seeing the team daily.

Charys · ‎13-05-2019

Hiyer Liz, I've replied to your PM. Contained means that they believe it is just that, in the breast and not anywhere else. Stage 4, ummmm, noooooooo......not with the tumour size and the 'possibly borderline a few cells in the sentinel node'. I know its all really confusing and you are hit with this BC malarkey at a time when you have so little knowledge of it, but take it from us old hands.....this is the type of diagnosis that so many women have on here, many who I have known for years and years and were entirely successfully treated. Many have a much larger tumour and cancer cells in various nodes, and are also successfully treated. Women of all stages, doing just fine. The stage your consultant describes at the moment sounds like 1B, a tumour of around 2cm and a few cells in the node. However, I am aware that you havent had your definitive diagnosis, and even if things change slightly from that its all early sounding and treatable.

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