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hi im new

6 REPLIES 6

Re: hi im new

Hi Debbie,

 

yes, we all feel upset when we hear that one of the sbc ladies has passed on. Many of them have been struggling for quite a long time tho....some for quite a few years, so please try not to feel more frightened....

we all go through rise and fall of our tumour markers every now and then....its scary but when a drug stops working then we are placed on a different drug and often that gives us a long period of stability.xx

 

my tms went sky high last year....over 1000, but now they are apparently way under 100. So obviously thats lovely...but we all know there are twists and turns xx

 

once your tests are complete you will be reassessed and may have a new care plan...but you will feel better when things setyle down a bitxx

 

hugs,

 

Moijanxx💚💚💚

Re: hi im new

Hi
Its lovely to meet you. Darcyana is now off treatment and doing great I'm not worried about her MRI I have my ct date through for the 2nd Feb I'm scared stiff but what can I do? Just got to deal with it. I'm so sorry to read your stories and hope you ladies are okay xx

Re: hi im new

Mammydebs,

Just wanted to say Hi and welcome. It is bad enough you being affected by this bl***y disease never mind having to see you daghter go through it too. No wonder you are feeling like you do. I lost my mum to SBC and my sister also had BC bt i think your sitation is worse. Please dont knock yourself..you are doing brilliantly to cope at all. I too get panicky when my markers go up but my onc has told me not to get fixated on them. They can go up without it meaning worsening or progression. We are all for you so please do keep posting. Fingers crossed that everythinhg goes well with your duaghter on Monday. Love to you both. xx

Re: hi im new

Hi Debbie,

 

welcome to the forum. Yes, I agree, you have had a bumpy ridexx

 

. When I was at your stage, I also went through a really bad time. I had a lobular cancer lump of 8x7 cms! It had also spread to my armpit lymphnodes and the soft tissue around those lymph nodes. 12 out of 13 were affected, they didnt manage a good margin, and I was given a poor prognosis. i too thought I was going to die very soon and had thoughts similar to yours.

I remember being so very scared and retired from my job on health grounds. however, here I am 16 years later! I remember scouring the forums, asking if there were any ladies with so many lymph nodes like me, who had lived a long time...and there were!

 

After my initial treatment, I had about 10 years being cancer free before it returned. I eventually went back to work again, but had done loads of study and a couple of degrees meanwhile, 

 

i have now had three years of chemo...my tumour markers went up to over 1000, last year, but on my current chemo they have gone below 100! Which im grateful for.

 

i hope my story helps a bit.xxx How. Is your daughter now? 

 

Do keep in touch, I find the ladies on here so supportivexx

 

Hugs, 

Moijanxx💚💚💚

 

 

Re: hi im new

Hi Marion
Its lovely to meet you hun I'm just getting my head around this site. I have scanxiety as it is as darcyana has a routine MRI Monday coming too. I read markers can go up for various reasons also so trying my hardest to battle the mental demons and think positive. This certainly isn't a pink and fluffy world
Thanks for messaging me
Debbie xx

Re: hi im new

Hi Mammydeb,

 

Gosh, you've really been through it haven't you?

 

I'm not an expert but it doesn't sound like a big rise in your tumour markers. A lot of oncologists don't seem to set a lot of score on them anyway, the scans are a better indication.

 

Waiting for the results is horrendoust! You can't help picturing all the worst case scenarios can you? But there are a lot of ladies on here who have been living with SBC for years and you responded well to treatment so here's hoping.

 

Anyway, you're in the right place to get support - maybe you could join the Scanxiety thread on the Living with Secondary Breast Cancer section where people share their worries about their scans and celebrate when someone gets a good result.

 

All the best,

 

Marion

hi im new

Hi

ive never used one of these before so bare with me. ill start off by telling you guys about myself. im debbie age 28 from north east england and mammy to Darcyana age 3. My daughter has been battling a brain tumour since being 20 months old she was misdiagnosed for 5 months and almost died this left me with ptsd. i was diagnosed with SBC with bone mets and lymph nodes in april 2016 after being misdiagnosed. I as any normal human get scared when bad news comes or is on the horizon and my anxiety levels are through the roof im currently taking  mitrazipine to try manage it. Anyway i had 6 docetaxel alongside herceptin and pertuzumab and had a scan in september once treatment finished to be told lymph nodes are almost clear and primary tumour has shrunk by around half bones were healing. I feel much better than i did on diagnosis and have been having 3 weekly h & p to manage it. i seen my onc last thursday and she told me that my tumour markers are starting to raise slowly they were 77 and are now 100 and something. All other bloods are fine so she wants me to have my CT as it was due. This has put me into a complete panic im terrified this means the end of the road for me and im dying. I have good days where my anxiety is fine then others where i literally shake with fear of dying and seeing news stories of people loosing their SBC battles really set me off. Currently on tamoxifen too.

So hello from me i always read the threads on here but never joined until now xxxx