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Newly diagnosed

11 REPLIES 11
Member

Re: Newly diagnosed

Hi Dolly,

you have had lots of wise words from people who get it and really understand. My primary diagnosis was 12 years ago aged 38, and secondaries last October. I felt like I had fallen into an abyss of unknown depth and width, but little by little I have become used to a new normal, a different me, and you will too xx

i am responding particularly because of your breathlessness. I had quite severe breathlessness which developed pretty suddenly, after my secondary diagnosis but before I started treatment and went to A+E. It turned out that I had pulmonary embolisms, for which I was prescribed a daily injection, which I have to do for the rest of my days. We are more at risk of blood clots as I understand it, it might be worth raising this possibility with your team if the breathlessness is really bad.

All the best and do come here when you need advice, we all do.

Kinden xx

Member

Re: Newly diagnosed

Shi 

thank you sooooo much ❤️❤️❤️❤️
means a lot and I will take your advice 💓

xxxx

Community Champion
Community Champion

Re: Newly diagnosed

Dolly ❤️The layout of the threads has only just changed today so we are all getting used to the new format 👭 as jaybro said be kind to yourself and take it a day at a time, do please use the numbers on here ❤️ Do speak to your team about anything and everything too, remember they have seen it all before and are there to help support and guide you ❤️❤️ Do everything your way, there are right or wrongs and you put yourself first. All treatments will be tailored to you specifically and coming and asking away on here will help 👭 as you hopefully are already feeling everyone ❤️👭❤️ Remember you are still you and you are amazing 💕💕Shi xx

Member

Re: Newly diagnosed

Hi Shi

I’ve  no idea, I thought I’d replied to you all individually 🤷🏻‍♀️ Just getting used to it 🤦🏻‍♀️
❤️❤️

xxxx

Community Champion
Community Champion

Re: Newly diagnosed

Dolly are you replying to me or jaybro?💕💕Shi xx

Member

Re: Newly diagnosed

Hi Shi, 

thank you so much for your kind reply. Yes it’s one hell of a rollercoaster and your right I do feel like I’ve been thrown out of a plane. 

My breast care team are fantastic and one of them was saying to me last week about all the new meds invented all the time. She also described to me about living with something like asthma. 

I’m sorry you too are on here, but thank you once again so much. Take care xxxx

Member

Re: Newly diagnosed

Hi Jan,

thank you so, so much for your reply. My word, everything you wrote was so true, you know exactly how I feel. You described things do well, and thank you for telling me I’m not useless. My family do say this all the time but I still feel I’m letting everyone down. 

Your so right about google and I’m glad you had your mind put at rest from your breast care team. 

Im also sorry that you are on this forum which means you have similar experience, but once again I thank you from the bottom of my heart for taking the time out to reply. 
I wish you well, take care

xxxx

Member

Re: Newly diagnosed

Hi Ruby, 

thank you for your reply. I’m so pleased your scans are stable let’s hope that carries on 🙏

It’s good to find someone to speak to on the same medication. 
Yes I get very anxious too when on the phone to my breast care nurses, scared stiff they are going to tell me something else and I’m always trying to judge their tone 🤷🏻‍♀️
It’s a very frightening time. 
take care of yourself and once again thank you xxxx

Member

Re: Newly diagnosed

Hi Dolly,

Sorry to hear your news but I really want to second Shi and confirm that you have come to the right place for information and support.

I am on the same treatment plan as you, also oestrogen receptive. I was diagnosed nearly a year ago and have been on the same treatment plan as you since last December.

You mention being breathless, I am not a nurse or medically trained but I do get breathless and with me, it tends to be when I am on the phone speaking to one of my nursing team. I have a habit of ‘shallow breathing’ and I can get quite nervous when on the phone so put it down to that. However, you may wish to get advice directly from a medical specialist. 

Like you, I had the most dreadful backache prior to my diagnosis and for me, certainly in the first few months of being on my meds, my aches and pains noticeably reduced.

Re positive thinking or maintaining a positive outlook, my personal advice would be that you take each day as it comes and in its’ own right, don’t put pressure on yourself. At the moment, you are understandably in shock and processing your news. 

There are men and women on here who have lived with Secondaries for many years, new treatments are being approved all the time and Palbociclib, for example, has only been a available on the NHS for about 3 years. So far, all my scans have been stable and for that I am truly grateful 

You take care 

xxxxxxxxxxxxxxxx.

Member

Re: Newly diagnosed

Hi Dolly01

That is utterly crap for you. I’m so sorry. I’m also sorry I can’t answer your practical questions but I wanted to home in on the emotional side of this.

A breast cancer diagnosis is always a shock. It feels a double whammy when you feel fine, have no apparent symptoms but suddenly find you are carrying this insidious disease inside (my only symptom was two new raised freckles on my nipple - a skin infiltratin of breast cancer and 2 tumours within which my mammogram hadn’t spotted!). It is a huge blow and it does set you on what most people agree is a rollercoaster. So please, never feel useless. Reading that brought tears to my eyes. You are facing one almighty challenge and all the certainties of life have been whipped from underneath you so you balance  precariously on the edge of a huge unknown. It’s terrifying. 

Unless you are Superwoman, you are asking yourself to achieve the impossible by staying on top of things like you would normally. That normal has gone. You’ll eventually find your new normal but meantime, be gentle and compassionate with yourself, as I’m sure you would be to any friend who found herself in your position. This is a very lonely and uncertain world you now face. It’s ok to feel lonely and uncertain about it. It’s ok to spend half the day sobbing or to numb your emotions just to get through to the other side of treatment. We all find our own way and your instincts will find your unique way for you. Listen to yourself, not to well-meaning people who want to chivvy you along because they think it’s the right thing to do (and it helps them to feel a bit better in their own pain about you). 

“Treatable but not curable” does sound terrifying and it might help if you rang the nurses at the number above. They may be able to reassure you by giving you another way of looking at things. I know they have helped me when I’ve been confused and almost despairing, as has my breastcare nurse who was able to put my “poor prognosis” revelation (thanks Google) into a completely different perspective. Speaking of which, avoid Google now. It cannot take your unique circumstances into consideration, is often out of date and has zero interest in the emotional impact of its facts. Consult the people who know your case.

If your partner is detecting signs of depression in you, which is very different from being upset or naturally down after such a blow, there is no reason why you shouldn’t consult your GP - if you feel he might be right, not for his sake. This is a time of complete ‘selfishness’ now. Selfish is the wrong word but what is right for YOU is what matters. Your partner may also find this takes its toll on him. Of course, the pandemic isn’t helping but Macmillan, Maggie’s Centres and the Breast Cancer Haven all provide support services, some of which are currently online - and they are always free of charge, for both you and your partner. Make use of them. 

I hope you find something that helps you reach some equilibrium, whether its yoga, walking, meditation, whatever helps you switch off and find some peace for a bit. I made very good use of Progressive Hypnosis’s Manifest Healing (YouTube) all through my treatment and beyond. And remember, you are NOT useless, you are human with a vast range of powerful emotions you can identify and some you can’t. Next step is to learn to accept them and manage them the best you can. Be kind to yourself.

Jan x

Community Champion
Community Champion

Re: Newly diagnosed

Dolly ❤️ I am sorry you find yourself on here ❤️👭 please do ring the number on here and speak to a nurse, also use the someone like me option ❤️ It does feel like being chucked out of a plane without a parachute as you try and process everything but day by day and with help and support from your team and breast cancer now and everyone on here you will settle into treatments and get through ❤️ Please do keep reaching out on the threads there is a lot of experience and support on here. Remember treatments and break through a are evolving all the time and people are living well with breast cancer ❤️ Breast cancer now and everyone is here for you ❤️💕💕Shi xx

Member

Newly diagnosed

Hi, I’ve recently been diagnosed with Breast cancer that has already spread to my bones. I was so shocked and devastated as had just been having tablets prescribed from the dr for lower back pain, thinking it was pulled muscle or trapped nerve. It was only when it got worse and they wouldn’t consider a scan my partner took me to a and e where I had a ct scan where it was picked up. 
I was seen to very quick and had mammogram, ultrasound scan, biopsy followed a week later by pelvis scan and nuclear bone scan. 
Even my nurse and the oncologist said they had trouble feeling the lump in my breast and I’m 4 years away from my first mammogram as I’m just 46. 
Mine is hormone related ( forgot all the names just getting used to it ) so I’ve been started on Letrozole, Palbociclib and Denosumab ( to strengthen my bones ) . 
Is anyone else on these and getting breathless at all? My partner thinks this has only just began since starting on it but I really don’t know. It’s getting me down, I feel useless as can’t keep on top of things like I would normally. I don’t feel poorly, just this....even my back pain isn’t half as bad as it was, and get headache now and again. 
I’m trying my hardest to stay positive but I’m really struggling at the minute, I’m so scared. 
I am normally the top googler!! But I have stopped myself. I was even scared to come on here because I’m scared of reading something I don’t want to. Truth is I am petrified, angry, upset, devastated and the rest. My partner is worried I’m getting depressed, I’m trying my hardest to think of positive outlook. But those words “treatable but not curable” keep ringing in my ears. 
xxx