Why not curable?

[windflower]

I've just re-read the last posts, and see that I've mistaken the name of the lady with mets in the omentum.  This should have been JayneO.  My apologies to Jayne and also to Carolyn.

Windflower

[windflower]

Hi Caroline and others,

I joined BCC some time ago but haven't really posted on here.  I too had secondaries in my omentum.  These were discovered in March, 2015, 20 years!! after I had Stage 1 breast cancer.  It was discovered because I kept being sick etc, etc.  Unfortunately it had trapped my bowel and I had to have an ileostomy.  I haven't heard of anyone else having to have this for breast cancer, but there must have been someone.  I still have the ileostomy.  Some months later they discovered I had multiple metastatic bone mets, which were obviously there at the time.  I was told I can't be cured, but can be "managed".  I had chemo and this had a positive effect on the mets in the omentum.  I have denosumab injections every four weeks and take Anastrozole.  This seems to be keeping everything on an even keel, as things have remained the same for two years.  I'm crossing my fingers that this will last as long as possible as I know things could change at any time.  I'm sending positive thoughts to all those with secondaries, and especially to Caroline.

Hugs from Windflower x

[Babsy]

I agree with Carolyn there is a process which we all have to go through. We are grieving for the life that we expected to live, all of the hopes and plans that we all make but which has now been pulled out for under our feet. So, it’s very much the bereavement process. You develop a new normal, but it takes time. 

These forums are great for emotional support but are also full of useful information. 

After cancer has spread from breasts/ lymph system it is then classified as stage four. When the disease is hel at bay or regresses it is know as NED, none idence of disease, which is what I’m working towards, and getting there. 

[Carolyn52]

Hello jayne
Welcome to the forum where u will find real ladies with lots of kindness and support ..
Yours is a bit more unusual for secondary ..from what I have read ..secondary mets usually party in the bones, liver and lungs once they come out of hibernation as breast cancer primary.
Until you know what your treatment is going to be you will feel like u r in limbo with it all ....but if you want to rant and rave ..we are here for you ..as we understand .
Hugs xx

[JayneO]

Hi ladies,

I am new to this forum and it has been helpful, if not a little heartbreaking to read all your messages,

I had breast cancer dx June 2012, surgery, chemo and tamoxifen - yesterday I was told I have cancer cells in some fluid in my abdomen and in my omentum....I am now waiting to go in for a biopsy.  I think I'm still in shock...if it's secondary that obv the treatment hasn't worked...it's hard to stay positive 😞 

[joellek]

Hi there,

my heartaches when i read this because its exactly what i ask myself about my mom...why isnt there a cure. But when i read about these amazing ladies who are going through on going treatment or who have improved so much, i get hope and we truly believe in the power of prayer and miracles and i think thats whats helping us get through this. my mom was dx with her primary in april 2012 and in june 2017 she was dx with secondary in her bones, liver, and lungs. I know all this beat it you can do it talk isnt easy to here, my mom feels the same. But please have hope. rest when u need and give it your all when you can. sending all you ladies lots of prayers.


joelle praying for a cure xoxo

[Sandrajane74]

Hi Bandit,

I have mets in my spine, ribs, hip and my skull 😕
I got diagnosed in may 2016 with secondary. I had BC back in2012. I feel ok, I'm trying to cope the best way I can as I have kids xxxx

[Sandrajane74]

Hi Guys

Feeling lots of positive vibes on here xxx

[Moijan]

Hi, from what I was told in 2001 when I had my primary....when they remove the primary tumour at the outset and give chemo, rads tetc if appropriate...they hope to have caught the cancer before cells travel round in the bloodstream and lymphatics.

often it seems to work

when it comes back, it is assumed that not all the cells were caught/ removed. ...when i had the recurrence, Isaid.'.I just want all of it out of my body now!' The Onc said, 'Sorry, we cant do that, but it can. Be controlled'

in my. Case,  i . Have multiple tiny seeds in my liver, so obviously those cant be removed.i. Did

i hear tho, that occasionally a secondary can be removed or blasted with something, its when there is multiple spread that they say it cant be cured.

however, I think almost anything is possible these days, so im hoping for a cure at some stage, personallyxxc

best wishes, Moijanxx

[Bandit]

Hi Sandrajane. I wandered on to this site in the vain hope that somebody had found a magic cure in say Mexico or Germany etc.  I had BC 12 years ago and it was recently found in my spine ( had bone scan last Thursday so will get the results next week to see if anywhere else).

I am going to a talk by a friend of mine,who wrote the book "The Cancer Whisperer", this afternoon.  I don't expect to find out about a cure however will pass on any snippets.  Where are your mets?  I hope you are coping ok.  Bandit x

[Sandrajane74]

Hi,

Is anybody out there?!?!?!?!

😕

[Lynnq]

I am in the same position. Diagnosed 9 Oct 2012 and had a RMx on 8 Nov. after that they found that I also had canc in my other breast and had a skin lesion under my R breast which also had cancer cells. They did CT and bone scans and found it in my upper spine and also shadows in the fatty tissue around my abdomen. Also lesions on my skull at the back of my head.
i have not had chemo I am on LETROZOLE and Zometa infusions......they say that they are saving the chemo - "for further down the line" - I had a blood test to see if there had been a drop in tumour markers and they said that there has been a huge drop......which they say is a good sign.
I have always wondered, like you, why they can't cure it - but didn't want to ask so I am grateful that you have asked .........

[poemsgalore]

Hi
My heart really goes out to all ladies with secondaries. The belief that we will be cured one day keeps us going, to be told we won't (I'm speaking metaphorically, I don't have secondaries but know one day I might) must be a massive shock. And when young children are involved, it's heart breaking. I can't say or do anything to help, but I'm sending big, bigger, biggest hugs to you all.

Poemsgalore. xxx

[stressy_messy]

Hi lynn d, there are quite a few lovely ladies on here with bone mets. I've put a link below to a thread on here, hope it helps and good luck with your treatment.
http://www.breastcancercare.org.uk/community/forums/bone-mets-please-join
It's quite a long thread started in 2009. if you want to get to the latest posts scroll down to the bottom of the page and click last post 🙂
Melxx

[Louise_BCC]

Hi Lynn d

Welcome to the discussion forums. I am sure you will find them supportive.

I notice that you have posted in an old thread, there are a number of newer threads, particularly on the subject of bone mets which you may also find helpful to read and chat in.

Best wishes

Louise, Facilitator

[Guest user]

Hi muddy, i have just recently been diagonised with the same thing, found lump in my breast, had breast removed, lymph nodes removed and all positive, still thinking i would get chemo and this nightmare would be over, but only to get scan back to say i had 4 wee spots on my bones and it was now secondary and incurable but treatable...omg i just so shocked so hard to take it i have 3 beautiful wee children who i want to c growing up and this news i just so hard to deal with..Seen my oncol on thursday and started me on tamaxifen to start with to see how it reacts, i am positive to hormone therapy so apparently i am "lucky" in that way don't really feel lucky, i am hoping that it will do the job it is suppose to for a as long as possible and then scans to c how it is going, it is very hard to get ur head around, but i am trying to look at it as a chronic diesease that hopefully we can live with for a long time being treated, and u never now they still might come up with a cure yet for it i so live in hope...But could so love to hear from other woman who have been living with this for a long time, as i do no there is....But it is just the worst thing in the world i am so determined that some day i am gonna deal with it and it is not taking over my life...xxxx

[Guest user]

Hi Muddy

I agree that the pressure from other people about 'beating it' is horrible. Cancer isn't a war or a competition...its b***y hard enough without being told you have a say in saving yourself.

best wishes

Jane

[Guest user]

Thank you for your reply. It is very hard to get your head around. People keep saying you can beat it as though I have a say in the matter.
I will hold my head up - keep strong for my young family and pray that the chemo will work for as long as possible.

Thanks

MuddyXX

[Guest user]

No is not a stupid question. First of all Lance Armstrong had testicular cancer which is one cancer which responds very well to treatment..that is why he has been cured...not because he rides a bike or is particularly brave.

Secondary breast cancer, like many other secondary cancers and some primary cancers (e.g. pancreatic cancer) cannot be cured because as yet there are no drugs which are permanently effective. However, there have been many improvements in treatments over the past few years which have extended the lives of many people with secondary breast cancer. (e.g herceptin).

Chemotherapy can work on secondary breast cancer for a while..it can even send it into remission, but sadly the vast majority of people with secondary breast cancer die of the disease though some live for many years while undergoing treatment. Different kinds of chemotherapies work on the cancer cells in different ways, but after a time the cancer cells become resistant and start to grow again and when they are active they can spread to more and more other parts of the body.

Basically the mechanism of cancer spread is not fully understood by researchers and doctors, and treatments are just not permanently effective. One day a cure will be found...that is all our hopes.

best wishes

Jane

[Guest user]

Hi Muddy,

My cancer has been deemed incurable as it has spread to my bones(as well as liver and brain) It is because currently they cannot remove the cells from my bones. Also the liver cells are too wide spread they cannot be cut out, as is the cells in my brain.

They can be treated but not fully eradicated hence incurable.

Kate

[Guest user]

hi

you are not stupid and it is not a dum question. I can't answer it for you but i can understand your fears.

This damn disease is just so unfair and no direspect to anyone but i feel its hard to come to accept especially when you have young children. I too have 3 kids and am of similar age to you and this just sucks.

sorry couldnt be of any further help
sukes

[vercors]

Muddy,
I have no answer to your question. I just wanted to give you a big hug and hope that the treatment they give you will allow to spend some quality time with your family.
take care

[Guest user]

I know this is a stupid question but i am puzzled. Why, when diagnosed with secondary breast cancer is it not curable. I hear of ladies on this site who are on chemo and it is doing it's job. Why can't that chemo destroy the cancer for good?
I know this is a nstupid question but I've just been diagnosed with a sec. on my spine and have been told it's treatable. Why not curable?
Is breast cancer different. I think of Lance Armstrong the cyclist who had significant cancer spread and now seems to be getting on with his life.
I know some of you ladies reading this will think I am a complete dummy but I'm 38 with 2 lovely children and really struggling to get my head around all this.
Thanks

MuddyXX