Lab results after surgery - terrified

Hi Moirq 

Just want to reach out and give you some support .  
I think they only class chemo as not working if there is no shrinkage or disease progression . 
The hope is that it has all been surgically removed .  I have been here long enough to see people with no obviously post op risks turn up with a recurrence and others do well despite the risks of recurrence being higher . It is not always a given . 
However it is absolutely a bump in the road . I just want to highlight one aspect . The robust scanning protocol . Chemo is not the only option to dealing with a recurrence. My mum had a lung met removed with no chemo prior or after her op. It has not recurred in that lung in the last six years . No chemo whatsoever ever . She was only two days in hospital , had it done under keyhole surgery and said it was by far the easier procedure . The scan caught it early before it had time to grow . 

You also did not mention your cell type but treatments like immunotherapy may also be a good solution if required . 

I see you were picked up in an area that clearly does the bowel screen from fifty . My mum lives in an area like that and the scanning is very robust here.

Additionally bowel cancer recurrence drop off significantly after two years . After that the number of people with a recurrence is very reduced .

It will take you time to digest this news and please feel free to contact our helpline staff on 0808 808 0000.  They also have counselling available through Bupa .

You are not on your own with this . You will get to a place of more solid ground . 

Still holding out that the surgeon ( which is the golden bullet) has caught it .

take care ,

Court 

Thanks so much, Court. As always, your words are calming and reassuring. 
I have no idea about cell type. I did ask the nurse if the tumour was ‘aggressive’. She hesitated and said that was a difficult word and that my tumour was ‘well established’. She said they liked to start chemo within 8 weeks of the op …. that would be an enormous struggle given how sore I still am!

thanks again and very best wishes to your mum on her journey. I was thinking if you - I lost my amazing mum on 19 Oct (massive stroke, she didn’t regain consciousness). She had bowel cancer 15 years ago and smashed it - she was an amazing strength to me. 

Hi Moira

Look at the positives here

1. Your team assessed that you were capable of  benefiting from surgery. That is a considerable investment in you. Implicitly you are a viable survivor candidate.

2. A week of death rays and 4 rounds of capox is not much.in the scheme of things.

As i read your remarks the prinary and mets remained malignant. The former and some of the accessible latter have been removed

so that is progress.

More nasty systemic treatment to clear up the inaccessible and loitering nasties will hopefully bring you to the sunny uplands.

I have just got out of surgery..ileostomy....3 weeks ago. Despite having 5 weeks of chemoradiation and 6x capox the primary and lymphs remained malignant. Am.usingly described off a PET scan as exhibiting a complete metabolic response with no signal there are no guarantees.

Surgery is an insurance policy and hopefully we have both collected on it. In the new year i will be joining you on more capox and all that jazz.

The drugs and death rays will have less work to do after surgery. A genuine clearance of nasties is in prospect. They worked before albeit partially for both of us so hoping they may now complete the job.

Anthony, thank you so much for saying all of that.

I did the worst thing, googled, and got in a proper panic! 
how have you been after your ileostomy? Do you have a ‘rear end wound’ to contend with as well? 3 weeks on mine is still agony and I can’t ever imagine being able to sit on my bum again! Do hon mind me asking what your diagnosis was? It gives such comfort hearing from those going though similar. I was 52, never sick a day in my life, prior to this bollocks kicking off. So hard with 4 kids and having been off work since June, from a job I love.

many thanks again. You write good words!

moira 

Hi Moira

Stay strong. You are on a path that is bringing you closer to the escape hatch.

You asked about my diagnosis. Stage 4. Initially assessed as dead on arrival. On hearing the details I immediately arranged an assisted suicide in Zurich.

Funnily enough its not played out like that and treatments have reversed a truely dire situation to the merely bad.

Things are however easier for me than yourself. I had zero hope to start with so do not worry about anything. But i can see how you could be stressed out.

Stress is your enemy. Move forward on the treatment path. Focus on getting though each chemo cycle in incremental fashion.

You asked about surgery. No problems that morphine cannot blunt. No bum problem as the tumour was removed from the front. Opened from groin to above belly button . Not at all.pretty..

Good job the surgeon had no ambitions in the plastic surgery sphere.

Kind Regards

Anthony  I don’t think colorectal surgeons will be winging over to plastic surgery any time soon . Love your sense of humour .

I totally agree with you . Mum was stage 4  at diagnosis. It’s been incredible to see what her team has achieved . Not to mention a gritty wee Scottish Gran who thought it was entirely possible ! 

 Moirq  So sorry to hear that . Our situations are so similar. Dad was the 18th . He too had a massive stroke but lasted a tough three weeks . Such special people to us. We shall keep their love deep within us .

No more googling for you . You have had so much to contend with so definitely time to focus on healing and listening to your body . In terms of recovery it’s still early days for you .

We are here for you and reach out whenever you need .

Take care ,

Court 

Thanks again, Anthony. You have been through so much and your positive thoughts have really given me a preverbial boot up the arse (tho given the pain on that region, maybe a boot elsewhere!).

I’ll hopefully find out next Thursday what the next stage of chemo is. 
let’s smash this!!! Moira 

Thanks again, Court. Losing mum was a massive shock - having Got through bowel cancer herself 15 years ago she was a power of strength. As you will know, nothing prepares you for it.

your mum sounds phenomenal! What part of scotland does she hail from? I’m originally from the NW highlands, but been living in the central belt since I was 17.

best, Moira x

Hi Moirq.

I also had a tough pathology result (click on username to see more), but tumour in different area. So understand the shock.

I'd hope your oncologist will tailor any further chemo you have to what they know now - Try to stay positive but write down all your concerns/questions and share them with your oncologist as I'm sure they will be able to put your mind at ease.

Next week is no long away, so maybe it's worth finding some things you love to do to distract you just for next few days?

Good luck for your appointment

Hello crumpets (love the username!),

how was your cancer picked up? After the surgery were the lab results you got showing local spread? I’m never very sure what the numbers and letters mean. 
what I think has shaken me is that the surgeon seemed pleased that he had removed it all. I got an appointment for a follow up appointment with him on 21 Dec, not sure why but I wasn’t expecting a call on Thursday to give me the oncology appointment, prompting me to call the nurses for the results. 
I’m finding keeping my mind active / not going into panic mode so hard. Not sleeping well at night, not helped by still being in a lot of pain with my rear end wound.

thanks again for replying. One thing that does give me a boost is hearing positive stories and how others are coping. 
Very best wishes to you. M