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Diagnosed today

11 REPLIES 11
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Re: Diagnosed today

Mermaid007,

 

Only my partner and me know, as if you didn't know you wouldn't know. Everyone says how great I look as I now work out daily, don't eat diary and don't drink alcohol.

 

 

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Re: Diagnosed today

Anniej

 

I love your approach to secondary BC. I was DX 15 months ago, and on Ibrance and Letrozole 3 weeks on and 2 off, with Zoladex every month. The tumours in my lungs have gone from 2.8cm to 1cm with tumour Marker at 30 🙂 I still believe that I can live with this, and try not to let it get me down. I am 52 and work still daily, not a hard job, and not regular hours, but yes keeps the brain off thinking about the disease. I love your approach, and I am scared to go to any meeting due to it being all doom and gloom.

Like you its is starting to be treated like a Chronic disease and not a terminal one.

hugs x

 

 

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Re: Diagnosed today

Hi

 

My children are 13 and 10. They seem to be coping OK with the idea of breast cancer - my mother in law had it a few years ago. As I say we have just said I will have to take drugs to stop it coming back. KO

My spine ops mean I am in much less pain now than before I was diagnosed.  I am coping ok with the zolodex and letrozole so if the side effects from any new drugs I get given when I see the onc now I have had my mastectomy aren’t too awful then life can carry on for them relatively normally for a bit.

 

 When things change we will talk again. If I do have a few years yet I don’t want them to be worrying all the time.  

It’s all so hard isn’t it!  For me it’s a constant battle between hope and despair! 

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Re: Diagnosed today

Hi WMJ,

Dealing with it in your own way is 1 thing that you can have control over. My husband reacted worse than me too, thinking I would not have very long at all. Your onc sounds very positive and presumably you are having some treatment if not chemo or rads? When I eventually get to see mine, I will have some idea as to what is likely for me, which should help my husband. 

Hope you have a fabulous holiday and enjoy your son's birthday.

 

Hi raraJ75,

Sounds like you are being treated with excellence, all happening very quickly, like a whirlwind. I am exactly like you in terms of my thoughts about my prospects, but I was only diagnosed with secondaries last week and haven't seen onc yet.

What age are your children? Mine are teenagers and I have not told them yet. My primary was 11 1/2 years ago when they were tiny and I found the breast cancer care book "Mummy's Lump" a valuable aid, but now I have secondaries so it doesn't really cut it.

 

All the best to everyone

Kinden x

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Re: Diagnosed today

Hi

I was diagnosed with bone mets and primary at the same time at the end of August. They treated the spine mets very aggressively and removed a vertabrae and put in some pins. This was done within days of diagnosis.

 

I am now on zolodex and letrozole and had a mastectomy nearly three weeks ago.  I am due to see oncologist again in a week or so to discuss further treatment - he is talking about the CKD inhibitors I think but we will see.  

I honestly feel like I am living in a dream (nightmare!) and that I will wake up and it won’t be real.  I just want to move on and know what is happening next. I swing wildly between reading about long term survival and thinking the absolute worst.

 

We have told people but I honestly don’t think they get what it means as people are so used to breast cancer being cured.    I can’t face correcting them!

 

I have two youngish children and they knew I had back pain so we have told them that they found breast cancer when treating my back so I had to have more surgery and take medication to stop it coming back (sort of the truth!).  When things change significantly we will discuss again - hopefully they will be a bit older. 

 

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Re: Diagnosed today

Thank you for all your responses and thoughtful words. I am back to the hospital on Monday and should have a clearer understanding of my treatment plan. I do intend to tell my son and daughter in law after my holiday. It is my son’s birthday on Wednesday so really don’t want to spoil that. I will also tell my very close friends.  The unfortunate thing about my elderly parents and mother in law is their frame of reference is often about so and so who had cancer 50 years ago,  when people didn’t live with cancer!

 

Thanks again. Xx

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Re: Diagnosed today

Yeah it's treatable but not curable I am 22 months into treatment on palbociclib (oral chemo)and letrozole these have some side effects including low white cells so you have to be careful re infections. I am still working part time personally I think it is important to get support from family and friends. I look on it as living with SB. Scans so far show 4 of 6 secondary tumours smaller. It's good if you can go on holiday and switch off as much as you can. I have secondaries in lungs pelvis and spine. Hope you get your treatment plan sorted for the first month I had bloods weekly now get 3 month's supply of chemo blood at GPS monthly and 3 monthly scans. Take care Liz

 

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Re: Diagnosed today

Hi there,

When I was diagnosed with mets 5 years ago I decided to only tell a few people. My work manager as I knew I would need time off for hospital appointments, plus a handful of very close friends. My very elderly mother and my two young adult children still don’t know and neither do my work colleagues. My treatment so far has been hormonal and I’ve continued to lead a normal life. I work and travel and socialise. ( I have mets  to bone and liver). When I have to go onto a treatment that has more side effects I will tell them then. I feel I am in the minority with my choice but just wanted you to know it’s up to you who you do and don’t tell. You will know when the time is right, be it next week or in 5 years xxx

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Re: Diagnosed today

Hi WMJ

 

you will be feeling very numb and shocked at this point. There is no right or wrong way to deal with this...the right way for you is the one that works for you.

the ladies are right when they say this is a treatable disease. Whilst we don’t have a crystal ball woman are living many years with this....only the other day I met someone who had been surviving 15 years!

 

Try to enjoy your holiday...you do still have a future to look forward too x

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Re: Diagnosed today

Hi, sorry you find yourself here. I was diagnosed with mets two years ago when I was in the middle of rads for my primary bc. Quite a shock I can tell you. I admire your calmness and resolve. You obviously feel strong enough to be able to keep this secret until after Christmas, and I can understand that. Everyone handles it differently in the best way they can. I told my family immediately as we had made a pact of no secrets. My husband told close friends who were phoning frequently to check on progress. If I was working I would have told them too as I think HR would need to be involved. I didn’t tolerate my drugs very well and had frequent hospital stays to get me sorted. Palbociclib crashes my neutrophils and it has taken a year to sort dosages. With the recent progress in treatment our life expectancy is now years, normally, and not the death sentence it used to be. I’m sure that before too long it will be a chronic illness much like TB. In the mean time I’m living with my disease, NOT dying from it, and relishing life. I’m on Letrozole and Palbociclib and am managing extremely well. No growth at all. I do get some fatigue and other nigfly se’s, but, hey ho, as I’m 72 I guess old age plays it’s part! 😱Sending hugs and best wishes for the future. 🍀👍

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Re: Diagnosed today

Hi. So sorry to hear about your diagnosis today..I can relate to how you feel and I'm sure so many others on the forum will too. I'm sure you are feeling numb at the moment trying to take or all in? My husband took it badly too and to hear "secondaries" you immediately think the worst as far as prognosis is concerned. I have secondaries in my bones too and diagnosed 3 months ago, but please be reassured the treatments out there now are so good that people do and still are living for years with secondaries. I personally needed to tell my family and friends as I needed all the support I could get, but everyone copes differently and there is no right or wrong way. I'm very positive and intend to be around for a long time! My treatment is going very well and bones already showing signs of strengthening after only my 2nd denosumab injection and I'm still working full time. My oncologist says they look at secondaries as a chronic illness now, like diabetes or heart conditions, there is no cure but they are very treatable. I wish you all the best and I'm sure others on this forum will also try to reassure you and give you support. Big hugs xxx 

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Diagnosed today

Hi there,

I have today been diagnosed with secondary bc to bones and liver. I am taking it all in it’s stride and relatively calm, however tomorrow is another day. The consultant said he is talking living with it for years, but clearly it is extremely worrying and I know there is certainly no guarantees. I am concerned for my husband who reacted much worse than me plus I haven’t told anyone about the tests. I am holiday next week and don’t intend to tell anyone until way after that and hopefully after Christmas. I am lucky enough to still have elderly parents & an extremely elderly Mum in Law, goodness who wants to tell them this news???? Plus my son & daughter in law and all my wonderful friends. I won’t be having chemo or rads so maybe I don’t need to tell them, other than our son and daughter in law? Maybe work on a need to know basis? I am more concerned about those things than anything else. I was exactly the same when diagnosed first time around.

 

Thanks for reading and hopefully responding with some words of wisdom.

XX