New to the group

9 replies
69 subscribers
584 views

Hi There I’m hoping for some suggestions or shared experiences and more hope than I’ve been given by my oncologist. I was initially diagnosed with bowel cancer in 2018 and since then it’s kept returning, showing on my 6 monthly follow up scans. I’ve had various operations, chemo and most recently chemo radiotherapy which ended at Xmas.

On the most recent scans to see how the treatment worked I was told there were several small nodules now showing on my lungs which she has diagnosed as secondary lung cancer and then she gave me around 2 years to live, saying it’s incurable. I’ve no need to tell you what a shock it was as I’m 55 and feeling quite well despite everything I’ve endured since 2018. I was so shocked at the diagnosis and unable to comprehend it as I don’t feel ill, that I asked for another scan in 3 months which will give me an idea of how quickly things are progressing. Currently they are 2-4mm. I was perhaps expecting Surgery on the bowel cancer but I’m not really sure whats happening in that regard now with this new lung diagnosis and they said with this discovery, an operation is most likely not going to be considered on my bowel. However it that is still growing, it will in time cause me problems down the line as it’s attached to my ureta and womb I have to decide if I want to live a life as full as I can for as long as I can or start chemo to try and slow growth, but it will never cure me.

I don’t known how big I can let them get by doing this before I feel unwell, or how unwell chemo will make me if I start that sooner rather than later. I am also considering CBD oil as what have I got to lose now? I know there are mixed views on this in the cancer community. With my hair loss if I have chemo, if it’s palliative; am I right in thinking it will ever grow back if I’m using it regularly to keep me alive longer and will I have a decent quality of life on the chemo? Sorry for the long essay but if anyone has been in a similar situation or someone they love, I would dearly like to hear from you.

Moi2 over 2 years ago

Hi HAC274, very similar prognosis to you. Extensive surgery 2018 all clear. 1 year later back in lungs and various othere places, told no surgery !! Palliative care 12 to 18 months. Needles to say I've gone 12 months over my sell by date. You'll find a lot of people on here have. Your 2 year prognosis is just an estimate. As for chemo that is your decision nobody should make that choice for you. I'm on immunotherapy every 4 weeks with treatment breaks, to give me more time. I've been stable for about 20 months and am on 23rd treatment. I feel well and just get on with my life, You'll get a lot òf support on here and humour, we all no how you feel as we are all the same or similar. Keep posting and sending positive vibes and hugs X

Remoh over 2 years ago

Welcome to the forum, sorry you have a need to be here. Take a seat and catch your breath, I’ll bet your head is spinning.

I can’t help on the chemo front because it has no effect on my type of cancer so I haven’t had any

i was 54 when declared terminal just 6 months after being declared cancer free, cancer is cruel like that I’m afraid.

the meds I have taken so far have had side effects, my hair turned white but it did not fall out. The upset tummy wasn’t pleasant but my oncologist worked with me to have gaps in my meds to let my tummy settle a bit.

for the last 12 months I have been declared stable based on Ct scans but then some leg tingling called for them to do an MRI scan which showed 6 new tumours. As my last MRI was 2 years ago we have no idea if these are growing so slow it doesn’t matter or if they only popped up a month ago and will finish me off rapidly. Another one of the joys of cancer.

for the first 12 months of being terminal I was in perfect health had no pain or any indication at all that something so bad was happening inside me, it really makes it hard to get your head around

as for tumour sizes one of my professors said to me if I had ten tumours all the same type of cancer inside me and all looking identical what ever treatments they gave me each of the tumours could easily react differently to the others, one more of those joys of cancer

hope some of this helps, others will be along soon and between us we have experienced a wide range of things

i have found on this forum no matter how daft the questions I ask someone has already experienced similar and can offer advice so never be afraid to ask or just shout if you need a hand with anything

Richard

be safe, be nice, be you

chellesimo over 2 years ago

Hi HAC274, welcome to the group, glad you have found your way here from the lung group. I am sure you will find this group very supportive. Xx

Chelle

Try to be a rainbow,in somebody else's cloud

Maya Angelou

Rainieday over 2 years ago

Hello HAC274, Welcome to our gang. Remoh and Moi have covered all the bases, but everyone will do their best to offer support and advice. Sending you a big hug and all good wishes, Rainie x

Kiwi gal over 2 years ago

Hi and welcome to the club no one remembers joining. The words stage 4 and palliative still send a shiver down my spine but thanks to some immunotherapy, letrozole, palbo and denosumab I've got a stable scan since this all began in July 2021. It seems we all react differently to the drugs but stable is the name of the game.

Ulls over 2 years ago

Hi HAC274, and welcome, my urologists said I had 6 to 24 month's, cancer primary in prostate spread to various soft tissues in my stomach and extensively in my bones.

Oncologist however disagreed with this, I reckon if the professionals are not sure about my shelf life, so I decided to put living for today first and cancer second.

All the best Ulls

Pet1968 over 2 years ago

Hi and welcome. That timeline is crap...treatments are so much better now...so don't hold on to it .

I was given 10-12 months ..that was October 2015!!!!!

anndanv over 2 years ago

Hi HAC, Welcome to this terrific, supportive group! I agree with PET, they really don't know how long you have to live. I was do Stage4 and given 5-7 months in 2013!!
They do not take into account all the new drugs, treatment and Trial Drugs that are now around. It is hard to get your head around things at first and it is like a rollercoaster you can't get off. Things will soon settle down I'm sure and you will realise there are lots of us here who have passed our "sell by" date!

It is not easy but try to take each day as it comes and just enjoy the little things!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

Salis over 2 years ago

Hi Welcome and sorry you are here, but as you can see lots of the incurables are well past the dates they were given. I was diagnosed in November 2020, told I had a year, if I had a good response to chemotherapy, and am now stable and well a year after finishing my palliative treatment. The treatment wasn't fun, but I am glad I had it. Best wishes with whatever path you choose, and stay with us for the support and laughter.

Sarah