Not good news : Just back from app not good news... - My Ovacome

My Ovacome

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Not good news

Friscok12 profile image
22 Replies

Just back from app not good news it's back and because I only finished chemo in Feb can't give me any just now so put me on LETROZOLE said I would be lucky to see 2years so upset just numb anybody else Been told about how much time they have left xxx

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Friscok12 profile image
Friscok12
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22 Replies
Lyndy profile image
Lyndy

Oh love! That's very blunt of them and not very supportive of you. You probably need a bit of time right now but don't forget..you can get a second opinion...and if your back is against the wall now could be a good time to do this. Sending big hugs to you xx Lyndy

minard profile image
minard

Hello. I can understand that you want "something" done quickly when you're worried. For me, when I was offered Letrozole it was explained that this was a positive step instead of leaping into another bout of chemo quickly. It felt like a maintenance treatment to be honest and I was happier with that approach. Give it a shot. Hormonal treatment like this works well for some and it's much less aggressive.

As for your prognosis, don't always believe the statistics. It's your body and your life. X

Friscok12 profile image
Friscok12 in reply to minard

Did it work for you xxx

minard profile image
minard

I'm sorry to say that it didn't... but that was a surprise to the oncology team. I gave it 3 months then it was time to reconsider chemo. Keep going Friscok12 x

Barbara123 profile image
Barbara123

You poor thing! How insensitive of them, do not accept their prognosis, and tell them so, they are not GOD! And no one knows when we are to leave this life! A second opinion is your right, so please get one. Where are you based? as the best guy I know of is Hani Gabra at the Hammersmith Hospital in London. He has a great team, the best, I always tell myself that when the going gets tough, the tough get going! It's been my mantra for nearly 5 years now and I'm still here! Big hugs Bxx

When the going gets tough the touch gets going as Barbara has said. So doctors should not be so blunt and negative. Hopefully these tablets will give you some respite until its time for more chemo. But a second opinion might be helpful maybe research hospitals you have near you. I would not accept we have a sell by date so keep fighting

Purple-iris profile image
Purple-iris

So sorry you have had this devastating news . But as others have said no one knows what our future holds and this disease is so individual . Take a deep breath and get a second opinion from a centre of excellence . Think you are in Edinburgh so what about The Christie and Prof Jayson . Others think very highly of him and I met him at the Ovacome Day , such a lovely man and I will definately be going to him in future if needed . Don't give up hope , sending you love and prayers . Love Kim X

dryden1 profile image
dryden1

Hi, I am so, so sorry that you got this horrible news and my heart goes out to you. But there are loads of treatments that are available to you and after the awful shock of having to absorb the news I am sure the oncologist will have a treatment plan aiming to get you into remission. Love and virtual hugs chris

dryden1 profile image
dryden1

PS I cannot believe the coldness of giving you a prognosis , how the he'll do they know how long any of us have got , how dare they,,,,

Cropcrop profile image
Cropcrop

Oh lovey, what a rubbish time you've had and somebody's bedside manner needs a serious looking at. I really wish I could slap your doctor for you, I'm so cross that people are allowed to be so blunt, uncaring and unprofessional in this day and age. Please get a second opinion, I know a couple of people who have seen new oncologists and been given a whole different prognosis, there are lots of people who have been given a time frame who have far exceeded it, the doctors really don't know, it is just guesswork based on statistics and as we all know the stats change all the time because we make them change. In the meantime draw upon every reserve you have to show this dreadful disease that you're in charge and that you're going to fight it tooth and nail with everything you've got. Keep strong love, big virtual hugs, I wish they could be real ones and lots of love ❤️ xx Jane

Tesla_7US profile image
Tesla_7US

Dearest Friscok, DO NOT LET ANYONE GIVE YOU AN EXPIRATION DATE!!! I cannot stress to you the importance of the uniqueness of your own disease. You are not a piece of data, you are a sentient being with animation that comes from your soul. I have personally witnessed three dear, close friends, two with breast cancer and one with OVCA who outlived miserable predictions of their "only 1-2 years left" prognoses. The BC women each lived nearly a decade longer and the third one, with OVCA, is still alive after 4 relapses in nine years and enjoying her quality of life.

I understand doctors think "telling someone their horizon" is a helpful piece of information. It should always be followed by: "Many patients surprise the medical community. We need more of them so we can study why they survive." This is exactly what my doctor told me. So, please dear woman, do not let this daunt you. Do not let anyone tell you when the dance will be over. Do not buy it. Keep fighting for what makes you want to live. The human spirit is POWERFUL. With love and energy for your road forward, Tesla

Friscok12 profile image
Friscok12

Thank you Everbody xxxx

Mrs_Atko profile image
Mrs_Atko

Friscok12...whilst you've been dealt a devastating blow I concur with the others...you've been dealt with (in my opinion) very insensitively. Stats are just that. Prove the bas*ards wrong! In the meantime please accept an enormous virtual ((hug)) from me.

Jemima xx

HogwartsDK profile image
HogwartsDK

Hey Friscok!

So sorry you got that news and in such an insensitive way too! I agree with all the others keep going don't give up take a deep breath and consider a second opinion!

Best of luck and lots of hugs!!

Dx

mumclark profile image
mumclark

Hello you have had a bad experience. Please stay strong and seek another opinion. I read back over your posts but couldn't tell if you have had surgery?

I am taking Letrozole as I am in a bit of a lull between treatment. Only been a month or so test will be in June - see what bloods are up to

Look after yourself

Cheryl x

Lily-Anne profile image
Lily-Anne

Don't worry you may be eligible for something else. Have you had genetic testing?

LA xx

Suzanne333 profile image
Suzanne333

I wish these doctors would come on this site and see just how well we are doing and the many positive stories there are!!!

They're just sat in their offices giving out information which is a guideline only. Can they really see into the future? Absolutely not. Just cruel guesswork which can have such a negative impact on the patient.

Xxxxx

IrishMollyO profile image
IrishMollyO

Hi there

Reading your post makes me sad and angry. Nobody has a right to speak to another human being so coldly. In fact all oncologists should be made to do an extra course on how to speak to patients with compassion and care. My oncologist has been known to tell people to go away and sort out their affairs ! Luckily so far he hasn't gone that far with me . As the other ladies have said everyone is different and anything else is just quesswork from old statistics . Get another opinion if you can and keep talking to the lovely ladies here . They have kept me going over the past 6years. Statistics would tell me I shouldn't be around anymore ! Take care

XXX

85live4ever profile image
85live4ever

Hi Friscok, this really boils my blood!!!! I feel a doctor, what every field he or she is in shouldn't guess how long someone has to live. Like I have said many times I was given 6 months with chemo I am still here 2 years 2 months later. Ok its been hard & I am back on chemo but I am still here.

My daughter in law often takes on a new plant I say I give that plant 6 weeks but years later the plant is doing very well under my daughter in laws neglect. I realize it's only a plant but guessing is just that a guess.

My old boss her father was given 1 year to live. He has been cancer free for 3 years & is doing really well.

My friend had breast cancer the same time I found out about my oc. The news at the time seemed grim but she has been cancer free for 18 months & doing well.

Why on earth would anyone be happy putting a time limit on someone else's life.

I met a lovely lady at the hospice she has brain cancer. Every time she sees her cancer team they count her down. Last time they gave her 18 months this time they said you now have about a year. She is so frightened she doesn't want to go back. I would love to go with her & say let guess how long you all have to live. Then I would point at each one of them & say " well you don't look that great yourself & then give them a year to live & see how they feel!!!"

It's seems we have to be so pleased we are getting help that we also have to take on how long they think we will last!!

I am sorry for the rant but really no one knows. Please stay in there take care Cindyxx

gwyn64 profile image
gwyn64

HI Friskot12,

I totally concur with all the comments given above. I have replied on your other thread abt. Letrozole which I was on successfully for 15 months - it could give you the break you need before other chemo! I would also seriously consider a second opinion from a major cancer specialist hospital such as The Christie, Manchester; St.James, Leeds or The Marsden in London. Remember you are not a statistic and what statistics they have are well out of date and not relevant.

Best wishes.

Gwen

Bluehen profile image
Bluehen

Yes, and don't believe them. I was told they would try and get me a year. It has been almost three years and I'm doing ok. I plan on several more years with all the new drugs coming out. By then, who knows, there might be a cure or other promising drugs. I worry more about the treaments and scans killing me than the cancer. Of course without the treatments the cancer would kill me. Just one nasty disease. Don't let anyone tell you how long you have. Some women live long lives with this disease. I was never given any hope and I think that is wrong. Hope is part of our healing process and because of my faith, I still have hope regardless. You are in my ptirayers.I personally know several people who were given no hope 30 years ago and are still having a good life surviving a cancer.

SCWI profile image
SCWI

Wow what a load of lovely positive posts. I do love this site all the ladies are so courageous and full of fighting spirit, bravo it is inspirational, thank you 😊 👏🏼🥊🎖xxxx

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