Breast Cancer Care Forum

Charys

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

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

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

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 :o) 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 · ‎22-05-2019

Hiyer Percy, I am not a nurse, but our stories are really similar, and wanted to offer my thoughts until you get a reply from the BCN. I also had the same diagnosis EXACTLY as you, in March 2016 (the only difference being my tumour was 15mm, everything else identical)), same treatment also. I started tamoxifen that summer and took it for precisely 6 weeks, and then my surgeon removed me from it saying that quality of life far outweighed the possible benefit I was getting. It wasn't a hard decision for me, although I was very scared of not taking, I knew I couldn't possibly continue with the side effects as they were very extreme both physically and mentally. Firstly you have done a good 2 1/2 years, which I believe is the most important period to do in terms of recurrence. I'm not sure if anyone can say 'what the chance is' it will come back; they could give me no facts, figures or guarantees, but they did talk through with me the fact that there was little point in taking something which meant I was not living a good life and all the issues surrounding that. My surgeon was very supportive, and said they would 'keep a better eye out' knowing I wasn't taking it and that I might not even be one of the women it was helping anyway. Some side effects I expected, some would have been copeable for the peace of mind of taking it, but I couldn't concieve of continuing how I was feeling at the time. I wanted you to hear from someone else (and there are many others who I have talked to in real life) who have found themselves where you are now. I don't want to put anyone off tamoxifen, it saves lives, and I tried it for as long as I was able and think everyone should try it - as some people get away with no effects at all. You have managed a really long time. However, there comes a time where you do have to consider your life and happiness. Yes, I have spent time over the last 3 years thinking now and again about the fact that I'm not taking it, and worried incase it could be helping, but I also wanted and needed to function and don't regret the decision.

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.

Charys · ‎12-05-2019

Oh and if you are post-menopausal there are other meds (not tamoxifen) that can be prescribed.

Charys · ‎12-05-2019

Hiyer Liz, I really really related to your post! I am now 51 years old, and 3 years post diagnosis. I have been in perimeno for 7 years with extreme irregularity of cycles, really really struggling prior to diagnosis. The last three years have been absolutely awful with peri symptoms. I won't even go into details of how my mental state has been affected (also referred to mental helath services at one point last year, but didn't end up using the service), as I'm sure it will be repeating many of the things you too feel, but it has been incredibly debilitating and tough at times. I was always at the mercy of hormone changes and was very ill with post-natal psychosis after giving birth many years ago. I was always told that I would need HRT at the time of meno, but of course, now I can't have it (despite needing it badly) and find it a hard place to be at times. However, I tell you all this as I wanted you to know, you can and will find the strength, its not easy but sometimes things are not as awful as you fear. I DO get through the lows, because they DON'T LAST, there is always an end to them and there are non-hormonal medications they can give you to help. You are terrified right now, as you don't know the diagnosisdetails and are thinking about all the 'what ifs' but you need to take this step by step, as has been suggested below. Don't think too far in advance, as you don't know if and what you are facing. If you find you are needing treatment then please remember, firstly this is YOUR body and you can make your own choices from what is offered. You will find there is a very strong support network for women diagnosed - with specific counselling even availiable. You can talk extensively to the breast cancer nurses and make descisions based on what is right for you. I won't go into details now of my own treatments, as it may be that you need different treatments, but you will find that you can access much advice and support - and if things are too hard then you just tell people and they try to find a way around it. As for tamoxifen, it affects some people with side effects, it gives no side effects for others....most of those who fear it generally give it a try and for a few unlucky ones the effects are so bad that they stop taking it. Ces la vie ! Quality of life is critical above and beyond a couple of possible percentage points of gain. I think it may help you to hear that? Nobody will force you to continue with something that makes you feel bad, IF it did. I am happy to chat via PM if you find you want to, and will check back on this thread to see how you are getting on. Oh one more thing - my oncologist told me I could have HRT providing I took tamoxifen. So, that would be something you could discuss. C x

Charys · ‎12-05-2019

I feel, being told your results on the day would be so much better.......... perhaps....??!! Definitely ! I was saying this in the car on the way back, the 'it could be 4 weeks before you hear' is positively cruel. I know the NHS do it as its the most cost-effective way to run the service, but its agonising.

Charys · ‎10-05-2019

That make me smile Gill, about requesting the mammo and then going into meltdown when it was time for it. Reminds me of something today - dreading it, terrified of it, had to force myself to go and had already cancelled it once! Whats the first thing I say when I get in to the radiographer - 'can I clarify that you have me down for enough years, as the surgeon said another two and I am due 3!'. So asking for more of the fear and misery - BUT - deep down we know how important it is.

Charys · ‎10-05-2019

Oh gingernut, just what nobody wants to hear - after having come through it and got through 2 emotionally challenging years! They say, from what I've read, that having a second diagnosis can hit much harder than the first (but still totally treatable of course!)- but thats jumping the gun isn't it at this point. From what I read from you, they have not diagnosed anything, but it sounds like there is something further they want to check. As you know, they are very very careful with anyone with a prior diagnosis and call-backs are common. I have my fingers firmly crossed for you that this is just a 'lets just be double triple sure' and call her back in thing.

Charys · ‎10-05-2019

SO so sorry Helena, I had no idea COlin was still in hospital ! I should and would have mentioned something if I had realised - you bearing up girl ? You are right to get them pushing on the rehab, the longer it goes on the more difficult it is to get moving again, as we are all aware. Great news Ann!!!!! Ok, I think I got lost in the system as they forgot my first check-up after surgery, so best remind them I am not a year further along as they think lol Dellllyyyyyyyyyy, so great to hear from you and even with all your failing bits and bobs LOL you sound upbeat and positive. Yes, the thread is quiet....its natural and understandable.....but so nice when people do reappear again.

Charys · ‎09-05-2019

I'm presuming all was ok for you ann - results wise? I forgot you were a few months ahead of me, until the reminder. I wanted to ask people here on the thread, I thought it was 5 mammos you were meant to have post treatment, but I am only down for another one. Is that right ?

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