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Diagonised today as terminal

28 REPLIES 28
Member

Re: Diagonised today as terminal

hi im glad to hear you are doing better. i had bc masectomy and chemo 17 years ago and was diagnosed as metastatic in lungs and bones in february this year after the doctors thinking my cough was due to pnuemonia. i was told that metastatic is incurable but treatable (terminal generally means 6 months left) so thats how i decided to view it. im on letrozole, gabapantin and ribiciclub as well as slow release morphine. i am still working as a nursery nurse and apart from a blue badge, having to take my time over task and no manuel heavy work my life hasnt changed that much. my first compartitive scan show i have managed to compress and fracture my spine. when i get my teeth sorted i need to have the bone injections because of brittle bones but mets are shrinking. my teeth are a big issue as are in a bad way and would cost a fortune but hey ho we will manage some how because thats what we do isnt it? now planning a family holiday for november. i love hearing all the success stories on this forum onwards and upwards i wish you all well x

Member

Re: Diagonised today as terminal

Update;  Have secondarys in my lung, breathing really bad , had drain, helped but only lasted one week. breathing so bad went to A & E, been in hospital 5Days on a drain, then had the talc put in , and so far so good, breathing much better. See oncologist on Thursday ti start chemo tabs.   Feeling slightly more optomistic since reading other peoples trials and tribulations, really does help when you dont feel so alone.

Member

Re: Diagonised today as terminal

Getting used to the incurable idea is hard. I can only speak for myself but I have lived with it for over a year now and think I’ve largely come to terms with it. I feel well and try to focus on the here and now. As I say I don’t want to lecture and can only say how it is for me. It got easier when I started a treatment regime and got used to it. My family have been great. They take their lead from me. They talk about it when I choose. I can only wish you strength and repeat what someone on this forum said to me. I can’t remember the exact words but it was along the lines of not letting cancer take more than is essential. Hope that makes sense and wishing you well x

Member

Re: Diagonised today as terminal

needed to read your words tonight. I was diagnosed about 3 weeks ago with secondary breast cancer in my abdomen. and I suppose my mind is thinking all sorts of bad scenarios. today just felt like this time cancer has upper hand as I cant be cured. its hard to imagine from now on im on a daily fight with it.weirdly when I had the chemo 9 years ago I felt I was fighting and could win..and for a long time I did...I hurt for my family too, they, like me cant see what the future is as it seems so uncertain. you seem so positive , thankyou.

Member

Re: Diagonised today as terminal

I too have been through same as you.   Had my first mammogram a year after original diagnosis for breast cancer,found another tiny lump, but my breathing was bad so also found secondaries in my lung. Given 6months with no treatment but maybe 2years on chemo tabs. havnt got that far yet, as had to have lung drain, which helped with breathing but only lasted one week, so now really struggling again and waiting for another drain.   Really dont know if i can take much more.Seems oh so pointless to go through more chemo, after last years nightmare, to be told at the end of it, it hasnt worked.    Think may just throw in the towel now and give in to this awful cancer . Thanks for listening .

Member

Re: Be kind to yourself

Hi Walsh

Simular story as mine.. had pre op and everything ready for surgery . Not in L nodes. .... Then had CT scan , precaution.. and wham. 

 

Thanks for all your posts on here

 

Hugs 

 

Member

Re: Diagonised today as terminal

I’m sorry that you weren’t offered a scan but on my primary diagnosis I had a CT scan and a Bone scan and an MRI on my boobs. Cancer cells can lay dormant in your bod6 for years and only a5 a certain stage will chemotherapy kill those cells so after I’d had my chemo/radiotherapy I thought that was it, only to find out 4 years down the line I had Mets to my liver.

Only at a certain stage can these cells be detected.

 

Member

Re: Be kind to yourself

Great message and great attitude bad ass mom 2019 I am  2004 bc then 2018 secondaries mets in lungs pelvis and spine . This is treatable not curable and as u say people living with mets for years . Lets fightt this together there is new treatments ongoing 

Community Champion

Re: Be kind to yourself

Hi Clarence

Sorry you have to find yourself here but you have come to a good place for support and information. I see you have also posted on the Bone Mets thread which is usually the most active one and therefore you will get more answers etc from it.

It is all very frightening and confusing especially at the beginning when you don't know what on earth your oncologist is speaking about.  Basically the 2 treatments she mentioned are for bone mets and they help strengthen the bones. They can affect the jaw hence her request that you see a dentist before you start.  As to the 2 options one is a tablet which you do need to be as upright as possible for for an hour after taking it, this is to make sure it goes into your stomach rather than not being swallowed properly.  The other is an intravenous infusion done in a hospital.  I'm not sure of the time this takes as I've not had it, although have had a similar infusion plus I've had the tablet form.  They are called bisphosphonates by the way, in case you hear that term.  The other option which quite a few of us are on is Denosumab which is given as an injection.  If you feel up to asking your oncologist you could ask why this isnt being offered.  Having had all 3 types of bisphosphonates over the years I personally think the denosumab is the easiest and quickest to cope with and administer.

She doesnt seem to suggest having any other treatment but presumably there will be scans periodically to see how your bones are healing.

As to your other post about depression janette has given a really good suggestion, it may be worth trying to find someone to talk to professionally who will know what you are going through.  Although all of us on here know exactly what it feels like to be given this diagnosis we arent experts and therefore can''t offer solutions other than what might have helped us.

Nicky x

Member

Re: Be kind to yourself

I was at Ongologist on Monday. She smiles and says scan is fine. She then looks at the scan again as is she's comparing two  and says something about 2 calcified spots to which I said are you trekking me I have bone mets. Yes she says smiling. She then tells me about a tablet I would have to take every day something like on an empty stomach and stand for an hour (those details maybe not 100% accurate) or infusion called Zoledronic acid to be given at the hospital. I have to go and see my dentist and get my teeth checked first as this can cause probs with jaw and healing if you needed an Extraction. I'm assuming the bone mets have had to take this. Which did they choose?she then finishes off with go out and enjoy yourself - life is for living!

 

Member

Re: Be kind to yourself

Please be kind to yourselves and do things that make you happy, and treat yourself to beautiful things, it doesn't have to be expensive. Try out new experiences and look forward to planned events 

We can still make plans, so don't be afraid.

G xx

Member

Re: Be kind to yourself

Take heart - I (45F) have 26 nodes in my lungs and multiple lesions in my bones - neck, spine, pelvis and ribs. Just had a biopsy that confirmed the nodules in my lungs are breast cancer mets. You can live for decades with mets in bones and lungs - you'll probably go onto a combo of chemo and hormone therapy, depending on the type of breast cancer. When you hear stage IV or terminal you start picking out funeral hymns - don't! We're all going to die one day, and the stats on the internet are dated. I'm determined to at least get my last boy through high school (3 boys - 19, 16 and 13yo). Not planning on taking it lying down. I'm seeing a shrink which has put me onto anti-anxiety meds, and given me sleeping tablets for when my brain won't shut up. Trying to rest. Trying to cut out stuff that drains me. Sending you a big hug and hoping that you can hang in there with me. Olivia Newton-John (first BC 1992; mets 2013 and again in 2018) says she wants to see a cure for cancer in her lifetime. I'm with her.

Member

Re: Diagonised today as terminal


@Oh Suzannah wrote:

Sorry to hear about your turmoil.

I have been investigating the next life.

A bought a book entitled 'Higher Self Now' by William Buhlman

I found it helpful, maybe you will too.

 

Best wishes


Great recommendation.   Loved the book.

Member

Re: Diagonised today as terminal

I so agree with you about the whole body scan. I was encouraged to ask for one by my osteopath who recognised my symptoms. It showed that the cancer had spread throughout my bones and very rapidly at that. All of my complaints about aches and pains had been dismissed as 'normal' but as it turns out they were all signs of the developing cancer. I would encourage everyone to ask follow ups after their treatment, so many things are left to chance.

 

Member

Re: Diagonised today as terminal

Sorry to hear about your turmoil.

I have been investigating the next life.

A bought a book entitled 'Higher Self Now' by William Buhlman

I found it helpful, maybe you will too.

 

Best wishes

Member

Re: Be kind to yourself

Hi 

Wise words and a brilliant imagination.xxx

Thank you.

Member

Re: Be kind to yourself

Hi again Walsh,

I've laid and howled many times! And it sort of helps. I have found myself powerfully angry with my cancer - POWERFULLY angry! My daughter suggested I try to mentally harness the power of that anger to fight the cancer, and that's exactly what I do. I send in imaginary soldiers, tanks, warriors etc and I sleep well once I've pictured sending them in to fight it for me. I sleep well because I trust them (harnessing the placebo effect I imagine...funny, but deadly serious too...), and if I wake in the night I bring the platoons out, give them refreshments and send more in...(keeps my mind busy and helps me feel in control).

Yes, I have found it frustrating sometimes dealing with the medical people, but they have only ever been doing their best with the information they had at that time.

I have asked for second opinions though, and medical teams are used to that. So, if you're wanting more answers or you're not feeling that trust, then there's no harm in asking for second opinion is there? I found it unsettling to travel on those occasions, but comforting to hear another opinion and have the appropriate treatment plan confirmed.

It is early days for you isn't it? So absolutely take it easy and be kind to yourself. Please feel free to message me privately too if you like- I will always answer.

Mary x

Member

Re: Be kind to yourself

Mary,

Thank you so much for your kind words,I have been told not to be to hard on myself.Strange but you say look up at the sky,I have been lying on my bed and looking up to the sky,but always ends up in tears.Your story is wonderful you sound so positive,also knowing you have this awful disease and getting on with your life 8 years this is amazing.

I only started my treatment one week ago.Ibrance,letrozole,then after 3weeks on have 1 week off,will have bone strengthening Zometa.This is all very scary.

Had a horrible experience with surgeon who said that he would be able to do mastectomy as he saw nothing on mammogram to suggest otherwise.He gave me a booklet to read about having the mastectomy and how long I would be in hospital.He said because of the reacurrance there would be a chest X-ray,bone scan,and liver scan,but again no problem,as it was procedure.He gave me so much hope.I trusted him.

Then a week later,to get results told no mastectomy,the cancer had spread,spots in bones.at this stage I was heartbroken,my husband was with me I just walked out of the surgery I had heard enough.Had an appointment with Onocology few days later,and they told me Had 6cm tumour in lung,also bone cancer in spine,and hips,(what happened to the small spots the surgeon was on about).I dont know who to trust now,I put my faith in this professional.These critters are not going to get me just now.

I will get help.

 

Xxx

 

 

 

 

 

Member

Re: Diagonised today as terminal

Hello Walsh,

It is good to hear that you feel inspired by the thread on here. I am inspired too, and I can see that I'm not alone; that there are a growing number of people aiming to live with this disease as I continue to do.

I experienced many difficult spoken words after my diagnosis. Things like: "palliative" (which I think only means treating symptoms so isn't so bad is it?), "terminal" (it's not terminal till you're dead - Prof from the Royal Marsden said that to me about 7 1/2 years ago and he was so right), and lots more things but I won't recount them now. I'm sure you know exactly what I mean.

My life was suddenly defined by something that I could not escape from. Nobody could rescue me. It was unimaginably horrible (unless you've been there), like my childhood worst nightmares. But, nearly 8 years on, I am gradually learning to live again. The cancer is a part of my life, but I refuse to allow it to take a big part - it deserves no such attention.

I have developed ways to deal with the trauma now. For instance, when I have my monthly tummy injection it hurts, and it reminds me that I have metastatic cancer, and all of that is terribly painful. So I have learnt to make my appointment as early as I can in the day to get it over with and put it aside. I am now so good at blocking the "I've got cancer" thoughts out that I miss my appointment if it's later in the day! I don't "forget", not really, but I have got better at recognising the panic, and gently letting those thoughts go.

I would recommend "mindfulness" courses. I have been to the basic ones twice, and to one with CBD for recurrent depression. It all helps.

As I type I am sending you big hugs, sometimes I find that "dark side" can be helped just by looking up at the sky for a bit and thinking "I'm here today, and it's not going to get me today", and then getting on with my plans, even if they have to be adapted to the limits I have right now.

Take care of yourself, accept help and demand it. And be kind to yourself because you are valuable just as you are

xxx

Member

Re: Diagonised today as terminal

i was told my secondaries were treatable not curable been on ibrance for a year and 4 out of 6 tumours smaller. Its tough but new treatmunts available all the time so tough as it is try to be focused on getting the right treatment people living so much longer with secondaries . X

Member

Re: Diagonised today as terminal

Just been diagnosed with secondary breast cancer in Liver 6cm,growth,spine,hips.Devastated,to say the least,No signs,just a little back ache.Looking on the dark side all the time.Just to let you your thread is very inspiring.

 

Member

Re: Diagonised today as terminal

Was diagnosed in Dec 2016 with mamogram and biopsies . . Scans after showed mets in lung and liver and hips and breastbone. .liver one disappeared really quick ..then heart failure n pulled from chemo .. started back again. .then off..then back on herceptin injection ..not working well so been on TDM1 since December and it was working really well. ..then idiot/ genius oncologist said I'd never had a brain scan. ... scanned Tuesday and he called Thursday and summoned me to barts Friday. ...mri booked  for Friday. .then hopefully targeted radiotherapy /cyberknife will be possible. .. lost my driving licence. ..and have always sworn radiotherapy would be over my dead body ... really just ready to just run away in my car and see how far across Europe I get before they catch me or I crash off a mountain. ..this tumour didn't magically appear overnight ....so I seriously don't see a difference 

Community Champion

Re: Diagonised today as terminal

Hi Maria, I am really shocked that someone has used the word terminal in your diagnosis. I prefer to think of it as living with, not dying from, cancer. Yes, it is a body blow, I get that, I really do. However, there are so many treatments now that I think we have to try to be positive and live the life we have to the full. I have lung mets which were discovered at my second ct scan in 2017. So I'd had the op, the chemo, the rads, then this. My Onco is a lovely positive man, and has inspired me to be the same. I'm on Letrozole and Palbociclib , which are not great, but I manage ok. During the last two years I have accessed lots of services through the cancer route, and also Maggies Place , which have helped me focus on what I can do, not what I can no longer do. I have never asked a question I didn't want to hear the answer to....so no asking for prognosis, for me. I try to stay active with little ( tiny) walks and TaiChi . The meditation is a great help. I wish you all the luck in the world. Sending hugs. X

Member

Re: Diagonised today as terminal

Hello magicmaria,

Yes it's terrible to be told isn't it. I was in shock for so long after I was told I have mets throughout both lungs and liver and other places too.

I don't think I've come to terms with it as yet, but I'm learning to live with it. It took me ages to realise that there might even be some long time between diagnosis and death. At first my thoughts always turned to the "death" scenario and I went into great bouts of extreme panic! Yes. It was devastating!

But, it's now nearly 8 years since diagnosis and I remain reasonably fit and well. I believe that there are more and more people living with it rather than dying of it. 

I have accepted (demanded) all the medical treatment I can, and I have endeavoured to change to a healthy lifestyle to support my treatment. And, so far so good.

It looks to me like this Breastcancercare web site is one of the more positive ones. I lijke that. And I am aiming to attend one of the meetings about "Living With" secondary breast cancer this Wednesday. I'll let you know what it's like Smiley Happy

In the meantime please be kind to yourself, and try to stay as positive as you can. Everyone's journey is different and perhaps you'll be sitting here typing in 8 years time having achieved loads? Nobody can tell what's round the corner. And treatments are improving all the time. I look at it like "surfing on the wave of new treatments"...and, so far so good.

At the start of my journey I spent rather a lot of time lying on the floor howling and imagining all sorts of stuff that didn't happen, when what I really needed to see that there was time to catch my breath. There certainly was for me and maybe there will be for you too, so don't despair my friend.

xxxxx

Member

Re: Diagonised today as terminal

Thnak you for sharing that, I wish you all the luck in the world xx

 

Member

Re: Diagonised today as terminal

my primary diagnosis was back in 2012. Had 4 rounds of FEC chemo, it didn’t shrink the tumour, so then had a mastectomy Right side, then found out lymph nodes affected so back to surgery for level 1 lymph node clearance, then 3 weeks radiotherapy. then tamoxifen for 2 years, they tried to switch to Anastrozole, but I couldn’t cope with the pain, so back to Tamoxifen.

 

secondaries diagnosed end of October 2018.... the it seemed to take forever to get to treatment plan stage with delays in getting CT scan appointment then liver biopsy. Then tests were borderline for Herceptin receptor so another weeks delay in waiting for the additional test for that.

so started treatment in January, and am just about to go into treatment 4 of 6 of Docetaxel chemo, then the Herceptin and Perjeta that I have along with that will continue until....whenever, fingers crossed that they keep things under control. They are using tumour marker to keep an eye on progress and will have another CT scan after treatment no 6. 

Member

Re: Diagonised today as terminal

hi jaygarden thank  you for your reply if you dont mind me asking how long was you diagonised and what treatment are you receiving xx

 

Member

Re: Diagonised today as terminal

Hi, sending you hugs.

 

Yes I was diagnosed with secondaries in my Liver and lungs and maybe spine, after 6years of turning up for my annual checks and mammogram, and being told yes everything is fine....when obviously it wasn’t! I only found out because ai’d gone to my GO because of a rhinitis cough and she sent me for a chest X-ray to give me peace of mind! 

I too believe that a whole body scan should be part and parcel of care for primary breast cancer, because assumptions are made about whether or not is has spread, even through you may have had the standard treatments, surgery, chemo, radiotherapy. I don’t know how long mine has been lurking there growing away, quite a while ai think, given the spread in my liver. When asked, the onc say oh we don’t do a CT scan as standard because of the radiation risk..... so it’s ok to have mammon’s on one remaining breast which really tell nothing, and then have to have three CT scans in six months to plot the spread of secondaries is it? That’s just not logical risk assessment to me.

 

try not to look at your diagnosis as terminal. Yes at the moment there is no “cure” for secondary BC BUT lots of different treatments and research and new treatments coming along all the time. So it’s life shortening, but we never know what is on the horizon that will give extra time, relief, etc. 

 

Member

Diagonised today as terminal

hi all i cant believe that today is 1 year ago from completing my radiotherapy for breat cancer, and I have today been diagonised with primary lung and seconday lung and liver cancer it is terminal i am absoultely devasted. What i cant under stand is that why when you are diagonised with breast cancer they dont do a full body can then so they can see wether you have it any where else.  I feel that i have gone through 12 months of hell with the breast cancer to then be dealt this blow.  Is there any one else out there who has gone through the same - sending love to you alll xxxx