Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Scared

Lynn2
Posted by

Well folks i went for my 9am appointment on Friday and the scan results were not good at all. My main tumour has grown considerably and the cancer can now be seen in my lymph nodes according to my Onco. I knew it was bound to happen at some point as i haven't had any treatment since last September when i was taken of the immunotherapy after it gave me severe colitis.

I asked what was next on the to do list, she mentioned the Docetaxel chemo which i told her i don't want and she said she wants me to have a PET scan within two weeks so she can get some accurate measurements with a view to doing some radiotherapy . 

I asked if there were any trials i could go on and got a very definate no !

I am so scared right now, i feel as if i have come to the end of the road and don't know what to do.

I was so upset that i didn't even ask any questions about the radiotherapy and what my prognosis is if i have it,  but having done some research since then it looks as though it might buy me a bit of time and could actually cause more problems so now i am thinking what is the point ?

Have  any of you had radiotherapy on your lungs and if so did it make any difference.?

I have even been researching cbd oil but dont really understand it all.

I'm really sorry to moan at you all and i do think myself lucky to have had what i consider to be an extra 5 and a half years of good life, but i am scared and don't know what to do. 

I cancelled my knee replacement appointment with the surgeon on Tuesday as i feel i cant deal with that at the moment and dont need the stress. 

The chronic cough that i had when i was first diagnosed has come back and is making a good nights sleep difficult which doesn't help.

.I feel a bit like a rabbit caught in the headlights and dont know which way to run, Lynn 2

Lynn 2. xx

tvman
Posted by

Hi Lynn

You sound like you're having a scary time right now. I don't know enough about your situation because I have bone marrow cancer and I have been told that an operation such as stem cell treatment or a transplant is not being considered because the operation would kill me (I have other problems like for instance heart disease). I'm scared too at times, we can comfort each other!

I think if it were me, I'd cancel the knee operation too, but it wouldn't do any harm to speak to both surgeons for their advice. Maybe in a few weeks time things will be more clear.

I hope someone that has had similar results will be in touch and give you some advice. In the meantime, keep in touch and let us know what's going on. Good luck Lynn

Tvman xc

My philosophy is simple, love life and family.
daloni
Posted by

Hi

You sound really scared - and I am so sorry your scan results brought such bad news. It’s ok to moan. It’s all part of processing the news. I think of it like a snow globe that’s been shaken. It takes a while for the tableau to emerge. 

I haven’t radiotherapy to the lungs although I’ve had my pelvis blatted with death rays in various formats - wide beam, focused on the place my cervix used to be and then focused on a specific lymph node behind my tummy. The more focused treatments were really very tolerable with minimal side effects. I’ve never had a recurrence at the top of my vagina - a classic for womb cancer - and the node they zapped in my pelvis appears to have completely disappeared. So I’ve had good experiences with it. 

I remember quite early on in my journey with cancer the consultant telling me that although I had disease progression, the good news was that it was still contained in the lymph system. By that measure, I think I might venture to say that although you might be at the end of one road, you’re not at the end of the road, if you see what I mean. 

I have never asked for a prognosis as I think they are a often a finger in the wind. I don’t find the idea of a sell by date useful unless it’s for a specific purpose such as persuading life insurance to pay out or claiming a benefit. What do you think? 

As for what’s the point, well, there’s more than one possible answer. Will any treatment make you feel better? Will it help you live longer? They are different things and I think it helps me to be specific about the question I am asking.

Is this too much too soon? Or should I shut up and simply say how truly sorry I am to hear about your scan? I know only too well that news like you have just had takes time to process and is inevitably followed with agonising waits for more tests, more appointments and difficult decisions. I really hope your thoughts will settle in the next few days and that you’ll find your way through this. 

With love xxx

Tinalay
Posted by

Morning Lynn 2, knowing that this day would come is one thing, hearing that it's here is a terrible blow. I'm so sorry you're facing this.

This is the worst bit, more tests and a change of plan but no clear way through at the moment.

I had gamma knife surgery for a brain and skull tumour with great success and minimal side effects. My understanding is that the high dose, targeted radiotherapy  shrinks the tumours and the lower doses over a period of time 'mop up' rogue cells and reduce side effects. That's probably a gross over simplification.

In my type of cancer cbd oil appears to cause marked disease progression, so it would depend why you felt you needed it. As Daloni said, you're scared and shocked, but may well not be at the end of the road. 

The PET scan will make things clearer, and I hope that your team will come up with a plan that will keep you as well as possible for as long as possible. Thinking of you and have everything crossed for you. xx

Tinalay 
Roobarb
Posted by

Hi I keep starting a reply but then could not feel I was offering much useful to add. I wanted to offer you my support and send you a big hug after such difficult news to hear.  

When I read your post again, it does sound like there is a chunk of light with the radiotherapy, it has come a long way in terms of targeting & side effects etc, so you may find this is a good option that gives you quality of life.  I do understand your concerns about docetaxol.

remember to take your time whatever you decide, all decisions are ultimately yours and it is ok to meet your consultant more than once while you make your choices & chat through the implications of them all.

sending you all my love, heather xxxx

Lynn2
Posted by

Thank you Tv man for your support, my head is a bit clearer today. Sorry to hear you cant have stem cell or transplant treatment because of your other health issues. All we can do is keep on going. Lynn 2. x

Lynn 2. xx

Lynn2
Posted by

Hi Daloni, thank you for your support, it means a lot. Never shut up because you always give sound advice and just reading your reply has made me feel better and made some things clearer too. Knowing my Onco as i do i don't think she would offer the radio if there was no benefit to me so that is good, i also remembered she said that the cancer is still contained in the chest and hasn't spread anywhere else so that's good too.

I don't think sell by dates are useful either, we will go when its our time and not until and i don't think having a time frame helps your state of mind and would stop you getting on with things so to speak.

Today is the start of another week and iv'e had a word with myself over the weekend and given myself a kick up the bum. 

Hopefully if she decides to go ahead with the radiotherapy it may buy me some time, and you never know a trial may become available in the meantime.

I have lots to look forward too, one being my 60th birthday party with all my friends and family on the 8th November and another weeks holiday in Scotland just before christmas. I am also looking forward to seeing all my spring bulbs flowering if i can ever get the rest of them in due to this awful weather !! The patio is green and slimy and really needs a powerwash but everytime i open the back door it rains.

I'm so thankful for this site as although i have a very supportive family and some great friends they don't really understand like you all do.

So onwards and upwards and just waiting now for a scan appointment and i just remembered a biopsy was mentioned too but i cant remember what for.

Hope your trial continues to not give you any nasty side effects and goes well. Lynn 2 xx

Lynn 2. xx

Lynn2
Posted by

Thank you Tinalay for your words of encouragement, I am seeing thing a bit clearer today and the feeling of utter dread and hoplesness has calmed down. Just waiting for a scan appointment now. Hoping for better weather so i can get out in the garden and get it finished. Decided not to persue the cbd oil as it is expensive and i dont know enough about it to warrant the cost. All the best Lynn 2

Lynn 2. xx

Lynn2
Posted by

Thanks Heather, thank you for your support it means a lot. I decided a long time ago that i would never have chemo again. I will just go with what the Onc says re the radio and see what happens. All the best Lynn 2x

Lynn 2. xx

Lynn2
Posted by

Just had a call from St James hospital, my PET scan is next Monday at five pm. Lynn 2.xx

Lynn 2. xx

daloni
Posted by

Great news about the PET scan . Not too long to wait. I’m glad you are feeling more settled and found your inner stern voice and arse kicker.

As for onwards and upwards, my spirit is willing but my flesh is weak. My motto these days is onwards and flatwards 

Lots of love 

xx