Dad with bowel cancer

Hi  and welcome to the board. Yes it’s a shock and cancer is a very scary word but bowel cancer is notoriously slow growing but very treatable. Has your dad had scans etc. to confirm if the tumour is contained within the bowel wall and no spread to other organs? 
The size of the tumour is not an indicator of ‘seriousness’ and it is common practice to have chemoradiotherapy before surgery as it can be very successful in shrinking the tumour which will allow the surgeon to remove it with clear margins ie. a clear area around the tumour.

Radiotherapy can be given over 5 days or sometimes mon-fri for 5 weeks. The chemo is a mild dose ini tablet form taken on those days. There is usually several weeks wait after finishing to allow the treatment to continue working then a scan to see how things look.

Please stay away from google - it is scary and out of date. You can ask anything you like on here and if you click on people’s names then their profile page may show their treatment so far. 

Cancer treatment is tough both mentally and physically but it is doable. It is a long drawn out process so just break it into stages and focus on getting the radiotherapy out of the way then on to the op. We’re all at different stages of treatment and recovery on here but will be happy to help and support you and your dad through this.

Take care

Karen x

Hello Karen,

Thank you for your reply. He's told me things very very brief which is just the way he is! Which is why I insisted on being there by call link Tuesday for his appointment. He has cancelled his trip to come and see me in July which I know he wouldn't miss for the world and started talking about making sure I'm down as next of kin on everything everything about making a few tweaks in his will which is what has worried me!! Maybe I'm thinking in to hints to much I don't know. It's just awful iv never been through a family member being unwell before as he's all I have and my husband. So this is all new to me and new emotions. 

I think I will feel better once I know more Tuesday once I can be involved by call link. 

I'm trying to stay possitive but it's hard isn't it when you have no clue about the big C. 

Thank you very much Karen. I hope you are well. 

hi Nhen 

so sorry to hear of your dads diagnosis. From what you have described it sounds like rectal rather than colon cancer ? And radio / chemo first seems to be best course. 
karen has given you really good advice.

You can see from my profile I was Dx at 58 years old and tbh although I roughly knew my stage from CT scan etc I still tidied up my will, life insurance beneficiaries etc so I wouldn’t read too much into that. You dad is just looking out for you and it does make you reassess your finances etc. 

best advice is take it day by day , step by step it all will feel excruciatingly slow. And  def make sure you are involved in all his meetings if you can.  You will remember more and ask more !!
 And I would encourage your dad not to cancel his trip to you he might be pleasantly surprised as to how he feels by then  

xx 

Hi . Just wondered how your dads appointment has gone? x

Karen you made my day asking and remembering! Not good it's spread to the pelvis and lymphnodes. So rectum pelvis and lymph nodes. Heart broken also just been diagnosed with myocarditis (unsure if I've spelled that right)

The the treatment is grueling,

5 weeks 5 days of radio I think thats what was said

Months of two different types of chemo some he will go in to hospital for iv and the other he takes the pump home for 46 hours. 

It's adenocarcinoma (think iv mispelled)

He's got to have a scan on his lungs he's breathless so there worried about that too. 

I was In on the call with the doctor. He's worried because I live so far if anything happens to him ofcourse I would be there but it would take me a few hours to get there. There's no one that could be there immediately.

Iam heartbroken. How are you?

Thank so much for asking so very kind of you. 

Naomi xx

Hi . Well it’s good to hear that they have a treatment plan in place but it does sound like he’s going to have a tough few months ahead. Is your dad able to drive and get himself to the hospital for treatment? There may be an option of hospital transport where they are picked up by a hospital volunteer but it’s often a good time ahead of an appointment then a possible long wait afterwards to be taken back home. 
Normally I’d say not to worry about chemo until you get to it but I think you would both feel better if you started to put plans in place now. The pump will probably be disconnected by a distract nurse but it’s probably better for your dad to arrange some sort of transport home after his hospital IV treatment.

Has your dad been allocated a Colorectal support nurse at the hospital where he will be having his treatment? It might be worth speaking to them to see if they have any suggestions as to how best to support your dad? You could also try ringing the nurses on here for a chat - they’re not just for the patient - they’re available 7 days a week from 8-8 on 0808 808 00 00 and may have some practical advice

I really feel for you being in such a difficult position so far away - it’s going to be tough so please keep posting on here and we’ll do our best to help and support you through this. Cancer will play a big part in your life and it’s easy to let it become all consuming but remember you want to be strong for your dad and that means looking after yourself too so make sure you find time to do ‘normal’ stuff with your hubby or go out for coffee with your friends.

Take care 

Karen x

Hi Karen,

Firstly thank you for being so lovely and offering so much support. I held my children that little bit tighter lastnight after yesterday's news. 

No he doesn't have transport but the nurse yesterday said they can arrange all of that sort of stuff. They wanted him to go to Lancaster because of his myocarditis which he refused.... not happy with his decision but I have to respect his wishes.

All we know so far is the diagnosis of the rectum pelvis and lymph nodes... is it bad that its in the lymph nodes? Please be honest. He has been very breathless so they will be doing a scan on his lungs. 

Personally I think he will find the gruelling treatment specifically chemo and I think he may then retract treatment due to the long drawn out process constant scans and appointments. Knowing him if it's too much of a fuss he will give up. 

He was the same with his covid jab once he found out he needed more than 2 doses he refused. 

Unsure about nurses at the moment but in the call yesterday the nurse said she would arrange transport etc. 

Just so shocked we thought it was just the bowel but now pelvis and lymph nodes. The doctor asked if he had seen his scans and he said no he didn't want too. I asked what stage and they said stage 3. 

Thanks for your support.

Hi . I was stage 3 when diagnosed and they suspected a couple of lymph nodes affected. Once the tumour and surrounding area has been removed then it is sent off for testing and that will confirm a final staging and how many lymph nodes are affected. I had 17 removed and 2 were affected so I had follow up chemo. My friend was initially thought to have lymph nodes affected but none were found after surgery so she was downstaged to stage 2. 

There is a lot of trailing about particularly with the radiotherapy. It’s Monday - Friday and the actual treatment probably only takes about 15 minutes but there can be machine breakdowns, patient backlogs. I asked for early morning appointments but your dad might be limited if he’s relying on hospital transport. The IV and pump chemo might just be 1 day every 3 weeks? 

If they give your dad a break between radiotherapy and starting chemo then maybe you could encourage him to come down and visit you then?

Not sure why they offered to let him see his scans! I was shown the scans of my lungs after I developed clots during my treatment and I’d no idea if what I was looking at was good or bad!

Hope your dad manages to get his head around it all - the treatment can be a big commitment but he’s still young and it is tough but doable.

Take care

Karen x

I'm not sure why they offered him either to see his scans maybe to explain in detail but he refused. I'm jisy trying to be supportive with what ever he decides even if I don't necessarily agree with his choices. Xxx