Newly diagnosed

Hi @sam and welcome to the community, though always tinged with a little bit of sorry to see anyone join our merry band I think it is one of the best clubs there is.

My wife's cancer is a bit different to yours - Leiomyosarcoma - but her diagnosis was now over six years ago - sometimes seeming almost like a whole life time ago. 

Janice has had two separate lots of chemotherapy - something of an adventure in its own right but worth it in the end when her cancer went from low grade to no evidence of progression.

Early on I struggled with the unknown and then I did a living with less stress course that really helped me. I came to realise I was painting my life in terms of a really black future I could neither predict of control and that was stopping me from enjoying what we actually had in the here and now. We also found life would throw curveballs that nobody had predicted but the conscious breathing techniques are really helpful to cope with those.

Perhaps it took Janice a little bit longer to reach the "living with cancer" state  One thing that can trigger her though is when someone says "you are so brave" - she tends to respond "when did I get the choice".

Sometimes we can get it a state where we see everything is a sign of the cancer, trouble is cancer does not make us immune to everything else and sometimes just the worry of cancer can make people ill. Well done for posting on here though - we understand how difficult life can be. 

<<hugs>>

Steve 

I have got the same diagnosis the same day as you. Can I ask how big is your tumour? 

Hi Joanna, 

my tumour was 16cm L  by 8cm W & 4cm D that was 8 weeks ago when I first had my scan but I’ve not asked since then & I know it’s got a bit bigger all they agave said it is very large. How big is you? How are you dealing with this? I’ve got a 9month baby who gets me out of bed in the mornings but everyday I struggle.  Xx

Thank you for your message, it’s nice to hear stories with good endings my husband has taken it quite bad and won’t open up to me. Such a hard time for us but I’ve got to get through this for him & our daughter x

Mine is too 16cm and they were very happy that i have pulse in leg and seems it has not spread yet to lungs, head, neck and nodes but still doctors behave like it does not matter becuase tumour is huge and for them it is like terminal stage becuase it is high grade and will spread soon. I am confused with doctors - one is happy that liposarcoma is only in one place but radiotherapy doctor has his own doubts if radiotherapy means anything with tumour so big. And surgery which has high grade of fatality after radiotherapy. In summery everyone think I would die. I am scared of it because before Christmas I was  convinced it is muscle injury and now I do not know I will make birthday party for my son in the next December or this February for my another son.  

Oh sorry to hear that.. mine is at low grade they said even though it’s big my cancer cells are low & they said they have got it quick. I’ve got a CT scan next Wednesday so we will know more. They think il have to have radiotherapy first cause it’s better that way & they said it is 90% cureable. I’m worried sick & really scared of my CT to come back cause I’ve had pain in my kidneys for a little while now so that’s worrying me. I really hope everything works out okay for you xx

Strange so I am confused - my oncologist told me my tumour is 16cm and that qualify it to high grade even though stage is I yet. And are you going to have only radiotherapy? 

Hi Joanna 

it’s on how many cells you have within the tumor ive got a low count so they are not worried about spreading etc. I’m having radiotherapy and then surgery cause they will shrink it first so I won’t have to have so much taking away with it x

OK, so the same treatment it seems to be.