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Newly diagnosed

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Re: Newly diagnosed

Interesting post Sue, when you are out of control it helps to feel in control of as much as possible by planning how you will get by, though of course we all know that things don't always go to plan ... Today I have started thinking about who I will ask to help me and my dependants through the next few months. Different friends for different roles etc ... 

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Re: Newly diagnosed

Hi Tina, it certainly is a journey. And everyone takes a slightly different route to complete it. The moment I was diagnosed I explored and learnt, something which is not for everyone - but I know whatever the actual diagnosis - I had worked out ways of how to continue living my life as normally as possible, keep my job (on my own, need to support myself) and what would need to be done when, depending on the outcomes. As it was the cancer was very much larger than anticipated and more aggressive - a shock, even to the surgeon and cancer nurse - a meltdown for 24 hrs and then putting into action the relative plan I had made for that specific outcome. So I picked up my wig yesterday, planning to have my long hair cut of a week before starting chemo - and will order my real hair eyebrow replacements tomorrow. No Onco DX for me, but great that you can have it. It will help you to make the right decision for the right reason, when it comes to the treatment, which will be suggested to you. There was really no question of not having chemo and, as I know now - radiotherapy. I also have to have a CT scan - to make as sure as possible that it really is no where else. All was confirmed today when I saw my oncologist and I shall be glad when that part of the journey begins, which will be around 20th May. 6 cycles of FEC. The plan of how to manage the cycle within me working will be discussed when I meet my chemo nurse. Cancer - no matter where - is very challenging - and everything is done to find out more. Having done an awful lot of research I believe that the many varieties of breast cancer are probably better understood for treatment than others. Leaving it in the body is simply no option - and other treatments are well researched with respect of the type, grade and receptors on the cancer - although I must admit, I would have hoped that a treatment having been used (successfully) for 20 years might have been updated by now. But in the end - there is only so much money available - and I must certainly say - they are not trying to save on my treatment. I am absolutely amazed at the help and support and excellence of the treatments available to me so far. I know this might sound odd - but I am glad, that if I had to have an illness - that it turned out to be cancer, rather than MS or motor neurone disease or something along those lines. At least I know that I can get better and lead a normal life again, unlike sufferers of such illnesses. So here is to our journey - and to the successful end to it - whenever each of us gets there. xxx
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Re: Newly diagnosed

Hi Tina,welcome to the forum .Even almost a year on I struggle to say the word cancer and accept that this has happened to me so you are not alone in that.It is quite a surreal experience ,like it is happening to someone else .Lots of ladies on the forum have had the Oncotype DX test,it is definitely worth having if you are borderline for chemo as it gives you a very good indication of your chances of a reoccurrence .Best to have all the info possible when making a decision ,it is still your choice though.All the best .Jill.
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Re: Newly diagnosed

Hi Sue H-S, I hope your onco appointment goes okay tomorrow, I'll be thinking of you xx

 

I had my second op on Wednesday 13th, the experience was okay having been through it a few weeks earlier. If anyone out there is nervous about operations, speak with your GP about getting a sedative for the night before and the morning of the op. It helped me alot, kept me calm and in control. I also asked the anesthetist for a sedative before the op. I'm not saying I skipped through it as it is still a nervous experience but it helped alot. When I had my gall bladder out last September I wasn't offered anything before the op and believe me I was sooo nervous, blood pressure and heart rate was off the chart so I wouldn't want that experience again.

 

My scar is a little rougher than last time, like you Sue H-S my under arm wound feels tight when stretching. Until the swelling has gone down I'm not sure yet how much of a breast I have left so can't decide yet if reconstruction is needed.

 

My doctors have said if I want reconstruction I could have fat injected.

 

I'm glad I asked for a copy of my pathology results, they are complicated to understand but with the help of this website I got to understand what they were saying as they have a guide you can print off and work through.

 

I've not had my second set of test results back yet so hoping they have removed a clear margin. I was also offered a Oncotype DX test which will apparently tell me the chances of this cancer returning and if I need chemo. Has anyone else out there had this test? If so, what did you think?

 

I've been told I need radiotherapy but the thought of chemo really scares me. 

 

Do you know....even now I hear myself say these words...cancer, radiotherapy, chemo and I don't believe it's happening to me.

 

What I find frustrating is that doctors don't know enough about cancer, they test, cut out and treat you with radiotherapy and chemo then what??? No-one seems to know, it's a guessing game. I continue to do a breast exam and I do worry if a lump will appear in my other breast.

 

What I have learnt so far is that this is a journey for all of us and where loved ones, friends, colleagues think that just because you've had an op to remove a lump the journey isn't over yet. It's not like putting a plaster on a cut.  Our healing is not just physical but emotional too and will take as long as we need it to xxx

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Re: Newly diagnosed

Hi Jobe68 I am just feeling so hurt and so angry and so pi&&*d off right but I also just

keep asking myself why did this happen, Mylife was going great I had just got engaged about

3 weeeks before.so I go from being on cloud nine and on top of the world, to being brought

back to earth with a bump and a bang with what turns out to be a breast cancer diagnosis.

thanks forf taking the time to reply Jobe68.

And good Luck with your results.

I will keep my fingers crossed for you that everything goes of for you.

Smiley Very Happy

 

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Re: Newly diagnosed

hi thanks for that charys, that was a great way to put it about the squash

you have just managed to sum up exactly how I am feeling and exactly

what is going on in my Head.

Thanks for that Charys. Smiley Happy

 

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Re: Newly diagnosed

Hi Tina, I understand your feelings - it is such a roller coaster., and I am so glad you can share your story so far. My timing is very similar to yours, with my op on the 24th March, mind you, I stayed 2 nights and had a reconstruction straight away. The ultrasound and MRI showed an invasive lobular thought to be 20-30mm - it actually was 110mm. I did not even feel a lump - it was found through a routine mammogram. The surgeon also had trouble feeling it. I have the same challenges with the wound under my arm as you, but am coping ok. Back driving and full strength back. Just a little tight when stretching upwards. Provisionally nodes clear. I have asked for the final lab results to be emailed to me - to understand exactly what is going on and to hopefully not have any more nasty surprises. As it is, I will now have to go through chemo and radiotherapy, which I hoped to be able to avoid as I have no choice, but to work through all of it. The cells are oestrogen receptive but HER negative, so Letrozole could have been the only treatment required. Radiotherapy can affect the implant, hence not idea whether I have to go back under the knife, and of course there may be another unwelcome surprise when I finally have the proper results. First onco appointment is the 19th April - nervous, but am pro-actively preparing for the 'fall out' I have to face with chemo. Cold cap is a NO for me, I would not be able to deal with that. So did internet research for a wig, which is close to my current hairstyle and saw a wig consultant today. I was truly amazed how perfect the wig looks and have made the decision to cut my hair off to 1" the week before chemo starts, whenever that will be. It gives me time to get used to having no hair and how I look without it. When it goes, I shall not have handfuls on my pillow and basin. I am actually looking forward to wearing my wig. Wow - the money I shall save in not having to have my hair coloured, cut and retouched every two months! As I have long hair it could take 4 years to get back to where it is today. But that does not phase me at all, perhaps not yet, who knows. By all accounts it could save me over £780 per year! I may sound very relaxed about it, but I have my melt downs, fears, sleepless nights, too. Luckily I am very pragmatic and get over my bad patches by concentrating on others, rather than myself. I am fortunate to be able to do so. The roller coaster of feelings is, as you now know, part of all of this - and to let it out is so important. We need all our physical and mental energy to get well and deal with what is 'thrown' at us. Energy spent on pretending to be ok - is energy, which is not really positively productive for us - and it often makes us even more miserable. Please keep us up to date - we are here to support you - and in the communities are so many tips and tricks to help us through. xxx
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Re: Newly diagnosed

I only now feel able to talk about my experience. I've looked at many of the threads and have found comfort in knowing I'm not alone and you all have helped me understand what I'm feeling.

 

I found a lump in my breast in January, had mammogram, ultra-sound and biopsy (ouch! that did hurt a bit), waited a few weeks (hated the waiting, still do) for results and was then diagnosed with ILC (Invasive Lobular Carcinoma) in February. Being given that sort of news was beyond shock. I just went numb. I honestly thought my emotions were not acting like they should but having read some other threads, this is not the case and I'm thankful for that.

 

On the 18th March I had surgery for a wide local excision on my left breast to remove the lump and sentinel lymph nodes which is apparently standard practice these days to check for cancer cells. I was quite surprised that this procedure is performed through the same day admissions unit. I was very happy to go home the same day to sleep in my own bed but sleeping was not to be. Trying to find a comfortable position was difficult. Haven't really slept much since January with worry.

 

Surgery went well, my armpit area has been quite sore because of the removal of the lymph nodes but with the daily exercises this has improved alot. Since the recovery I've developed a seroma (fluid) in the wound site. Had it check by BCN. All quite normal! Sore and uncomfortable I'd say.

 

Received my pathology results yesterday from the surgery.....confirmed the lump was an ILC, the size was 21.5mm but they also found a Invasive Tubular Carcinoma which I think is a IDC (but I could be wrong) next to the ILC, the size was 9mm, unfortunately there wasn't enough of a clear margin of healthy cells, so I need more surgery to remove more tissue!

 

Provisionally I'm having surgery on Wednesday 13th April, feel a bit gutted in some ways as I'm only just getting over the first surgery and now I need to do some more healing after next Wednesday. One step forward, two back! 

 

Best Wishes

 

Tina

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Re: Newly diagnosed

Looking forward to water Jo x

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Re: Newly diagnosed

If the cap fits Barry! 😜

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Re: Newly diagnosed

Great analogy! Yes the squash will begin to get diluted.... Some days it will even taste just like plain water!! 😉

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Re: Newly diagnosed

I guess this is the proverbial emotional rollercoaster Nancy, we are currently sitting on. To me it feels like everything you could feel over many years, being intensely compressed into a few weeks. Fear, shock, anger, despair, moments of strength and positivity, tears, love, lack of control, surreal thoughts, an aching heart, and the rest......all intensely concentrated like a tiny teeny  bottle of that fruit squash that gives the same number of drinks as a full sized bottle. As I said earlier, you feel what you feel, there is no right or wrong, go with the flow.   I gather from others on this forum, that eventually the roller coaster slows and you start to have glimpses of normality which become more and more regular. That 'squash' gets diluted !!! 

 

 

 

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Re: Newly diagnosed

Ha, Jo the old pro has certain rhyme to it 😉

Chary's and Nancy you're going through what Nikki and the majority of people have or are experiencing. As I said the early days around diagnosis are tough, but it will get better. Oh and my wife Nikki is still healing from rads, she had booster sessions and resulted in blisters. But in terms of normality, we both went to a work pub quiz last night. It was good to be able to do that sort of thing again x
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Re: Newly diagnosed

thanks for that Charys, I suppose because I am feeling and experiencing such a wide range of feelings and emotions I will not be feeling either one feeling or one emotion for long
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Re: Newly diagnosed

Bless you Charys, I so want everyone of you in the early days while your filled with fear to know that it gets better and you will get a sense of normality back and even when like me waiting on results you will be able to do it and keep a level head of sorts! I've got some control back now and I'm keeping hold of it 😉 Xx 

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Re: Newly diagnosed

....and Jo you are not only waiting yourself but encouraging others, that's so fantastic and selfless. I hope to be able to do the same in the future. 

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Re: Newly diagnosed

Thanks Barry, playing the waiting game again, should be an old pro at it by now!!  😉

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Re: Newly diagnosed

Good luck with your results Jo! x

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Re: Newly diagnosed

Nancy your feeling just how we all did upon diagnosis, world spun upside down, disbelief that this is happening to you!! Anger that it's you and not someone else, it just wasn't in my plans, I live a lovely happy life and this wasn't supposed to happen , I spent weeks feeling rage at it for daring to do this to me but some how you start to find a way to get your head around it, you realise it is happening and you have to face it but you don't right now, you are allowed to go through all the emotions before you come to a sort of acceptance and you will although it may not feel like it right now, I'm now a year on waiting on mammogram results from Monday and I'm actually feeling ok, I'm surprised that I am but there is no big melt down like I was expecting, I'm anxious of course but I can't change the outcome and I won't let this b*%$*#&d bring me down any more!! Xx jo 

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Re: Newly diagnosed

Hi Nancy81, The advice and comments given are all so very right. Be kind to yourself - let yourself feel whichever way you want to feel - blocking feelings and putting on a brave and positive face all the time, does also take it's toll. You need all of your energy to prepare for your journey of recovery. As I am a sci fi fan - I kinda feel as if I have been beamed to an alternative reality and am trying to find the wormhole to get back..., lol. How far are you on your journey? What do you know so far? - that is of you wish to share..happy to e-mail, too
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Re: Newly diagnosed

People have said to me that there is no right or wrong way to feel, you are feeling what you are feeling and your emotions can swing wildly at times.....every shade of emotion will have been experienced by someone somewhere. Each of us has our own unique lives, personalities and ability to deal with shock and process it. A doctor friend said to me ' don't try too hard to feel a certain way, just let yourself be whatever you are right now'. Whatever you feel right now won't always be.

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Re: Newly diagnosed

thanks for that bazza it's really helped. I hope your wife is on the mend now.
Hugs x
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Re: Newly diagnosed

Hi thanks Helli18, I am proberbly feeling just about every emotion under the sun right

about now. I mean I just don't know how I feel, Or how I should be feeling.

I just wish that someone could tell me how and what I should be feeling.

It just feels that right now it feels like my whole world has been turned

upside down and topsy turvy If you get what I mean.Smiley Mad

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Re: Newly diagnosed

Thanks Bazza Cat Happy

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Re: Newly diagnosed

Hi Ladies, I just want to offer some words of support. My wife was diagnosed last Auguest, the initial diagnosis is horrible for you and your family. You question your mortaility, there are many tears and if you're with someone you'll realise just how much you love them. Once treatment gets under way, things do improve, Mainly because you're preoccupied with dealing with that. Take each stage at a time, don't get ahead or try not to worry about possible treatments until you have them. 

 

This forum was a Godsent to us both.

 

P.S my wife was 36 when diagnosed and they kept on saying how young she was, that pee'd her off at times.

 

Sending hugs to everyone x

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Re: Newly diagnosed

Nancy,  I was diagnosed  in February abd felt that  the bottom had dropped out  of my world,  and that somehow they had got it wrong.  It's a really difficult time as there is a lot of waiting  and no clear plan.  It does get more manageable, please don't have  any fixed  expectations of how you should  feel ask away on the forum  x

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Re: Newly diagnosed

thanks Jill. 🙂
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Re: Newly diagnosed

Thank you so much for replying I am so grateful, You have just put into words exactly how I am feeling right now. I will also try and find out how private messaging works if you ever need A chat, or you just want to vent. But there is no pressure. Take care. xx
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Re: Newly diagnosed

You will get support wherever you post.Even from us old buggers !!!
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Re: Newly diagnosed

Thank you, I will try the other forum and maybe the helpline too, x
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Re: Newly diagnosed

Hi Lucy,welcome to the Forum .There is a section in the Talk to People like me section for younger women if you want to post there too. ,the helpline can also link you up with someone who has gone through similar to talk to.Like you say doesn't really matter how old you are ,hits you like a sledgehammer.
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Re: Newly diagnosed

Hi Nancy,

 

snap. I was diagnosed last Thursday and seeing my BCN tomorrow morning for the first time. I can honestly say, like you, that I've never experienced anything like this emotionally. It feels as if the world has stopped turning, as if the shock is so deep that you can't recover. The depth of fear, and desperate feelings are beyond description actually. Every thought you could have in your nightmares comes into your head, I know as I am feeling it too, it is surreal and not something that I can even begin to understand how to tackle. If you want to share with me on the times ahead then I will find out how to get private messaging on my account.....but no oressure if you don't want to either! Do what's right.

It feels like 'being mortal' hits you in the face and it's a terrifying experience. I have taken comfort from coming to this forum, just as a way to try and get my mind into a place where there is support and positivity. Just to know there are others there is a help. 

 

Take care x

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Re: Newly diagnosed

Hello, I was diagnosed with breast cancer 5 days ago and I feel how you are feeling. I've gone through every emotion possible and I'm feeling quite vulnerable at the moment, can I ask how old you ladies are? I'm 29 and wondered if there was anyone of a similar age? Anyway it doesn't really matter, any age is hard and it disrupts everything in your life. I'm still having tests but I've almost got a treatment plan coming together, hugs go out to you and I hope that each day gets a little better for you both, I'm scared and emotional but have appreciated distractions added try and not spend too much time on my own, I will look out for any replies, sending love x
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Re: Newly diagnosed

Hi Nancy ,it's certainly does turn your world upside down,but it does turn back right side up eventually.It takes time to get your head around this and it is very shocking g in the beginning but once you know what happens next and what your treatment plan is you will feel calmer and begin to get your head around this.Its all very surreal in the beginning.Lots of advice and support on this site .Talking to people who have been through /are going through the same is a sanity saver .Jill.
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Newly diagnosed

Was diagnosed with breast cancer last week and I feel like my whole world has been turned upside down! This probably sounds stupid but I just can't bring myself to even except that I have bc. I just don't know how I am going to cope not just with being able to finally excepting the diagnosis but everything else that goes along with having bc.