I am alone, I have been officially diagnosed and a plan is being prepared. So far though I am confused. I am to have 5 days a week radiation for 5 weeks, then 2 x sessions for intrauterine chemo, supposedly to shrink the tumour...all good so far makes sense.
Problem I have is that the tumour is 7.5 x 5.8 x 5.8 and I just presumed that after it has been "shrunk" that I would have to undergo a radical hysterectomy to remove the necrosis and diseased areas of the body. The cancer has spread to the iliac nodes but there is no evidence of it as yet going to bladder, rectum, uterus etc so why the hell would they not do surgery?? What am I missing here? I am a public patient and have asked for a second opinion so we shall see.
Also, pain management, I was put on Dex, Panta, Endone and Slow release Codone and feel nothing but pain still? Is this normal? I only started today, does it take time to build up perhaps?
So overwhelming 😞
I'm very sorry to hear about cancer and all the pain that you've been having. It's such a terrible disease.
It's not unusual for the patients to have chemotherapy first, followed up surgery a number of months later if required.
Have you been told that you won't be having surgery? And if so, have you asked why not?
What were their responses?
I'm really glad to hear that you're getting a second opinion if you're not happy with the answers that you have so far. Good on you.
Please let us know how you go!!
Hate saying welcome to the club 😞 Nobody wants to welcome anybody to the cancer club. I have head and neck cancer - and for my pain I have a couple of different pills but I have a liquid which is my life saviour. It's called OxyNorm. I'd die without it. It's the only thing that enables me to swallow anything without crying 🙂 I gather I won't be able to use it long term but for now it's my go-to every 4 hours... maybe ask them about it?
Early days but the response was "we don't do that anymore, why would you take it all out?" Well, to me if it is already diseased and I am 46 and not planning on having anymore children, why not take the whole reproductive system out to perhaps secondary cancers?? This seems to be a public hospital opinion..money? Who knows, but privately they have told me they would do radiation then brachytherapy (my blood counts and Iron is way too low for chemoradiation) then surgery once the tumour (hopefully) shrinks to 4cm or less. At the moment she is 7.5 x5.8 x5.8 so too big to operate straight away which I understand. The private guy said he would then consider chemo after surgery but highly unlikely so very different stories from public to private which is kind of concerning.
Loving this forum already, it is nice to have someone to talk to and not necessarily the cow eyes and the soft touch on the shoulder for a change! lol
Thanks for the reply, I have now been put onto dex and panto with 10/5 oxycodone release and an extra boost of Endone at night if I need it, so far touch wood I haven't.
I have been going from the bedroom to the loungeroom and it has been too painful to sleep so even the basic chores have been on the wayside. Two days later and I am sleeping 6 hours a night already, got up at 6am this morning, cleaned the car inside and out and did the rockery and front yard weeding and in a couple hours heading out to do the shopping which I have been relying on home delivery for! I feel a bit more like my old self and have to be careful not to overdo it I guess.
I had my planning CT yesterday so my actual radiation starts on the 17/3 then chemo if I go ahead with it on the 19/3 so if I can get a couple weeks cleaning and cooking in to prepare I will be more than happy as I am alone. Have not called Cancer Council as yet though to see what services they can provide or help me out with as yet, still in new stages, just read all of the information pack last night...and trying to organise my IP and TPD payments etc is bloody exhausting and time consuming!
Thanks for your reply, really appreciate it 🙂
Sorry to hear that you are going through pain, I cannot even imagine that area being affected, sounds utterly crap and not fair!
I have been put on Dex and Panto and Slow release Oxy now 10/5 plus I have an instant release if I need it at night which I havent yet and I am back to being able to do a lot more just in a couple days so that has been exciting! The Dex is a steroid so roid rage!
I will ask about yours, I guess being that the cancers are in different areas, the drugs will differ also. I hate being on opioids though, the slow release seems to be better than the instant hit for me.
Thanks for chatting back, really appreciate you sharing,
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