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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Trunky

Operation delays

Hi All
Have any of you experienced delays in having an operation?

Here is my timeline:
26th Feb: 2 year surveillance CT scan.
9th April: MRI scan as the CT has shown likely liver met
16th April: meet with surgeon to agree resection - likely surgery 11th May
20th April PET scan
30th April pre op
Chased team and was told operation now scheduled for 23rd May but not definite
Chased team again and told that the operation is now 1st of June.
I expressed my concern to the nurse that each day was another one that allows the tumour to establish and grow, she said "that's not how it works" ?!
Is the above timeline normal?
Thanks
Steve

belinda66

@KatieR:
"I was warned by a neighbour that cancellations are a fact of life nowadays
She has been told she has a malignant polyp in her rectum and has been cancelled five times over the last three months"

That's so shocking I'm almost speechless. Why on earth do we as a nation tolerate this. I hope your neighbour's okay.

Gypsy

I was told that there is not the same urgency over secondary tumours as the primary but at the same time, it is obviously better if it can be done as soon as possible. My secondaries were diagnosed in the April (2012). My liver op was performed on the last day of July and the lung one 3 and a half weeks later so end of August. I had 5 weeks when they had done all the tests and scans and just had the op date and the waiting game. The lung tumour was measured again before the operation and it had only grown by a scarcely measurable fraction in that time and I had been told that my tumours were relatively slow growing. I was concerned and found it all hard but it was alright for me. I was also told that all cancer patients have to have the same priority and decisions therefore made on clinical urgency etc and I could accept that but at the same time, not easy.
The primary tumour is a different matter and there is generally urgency over that, so it seems and from what I know.

mem

How frustrating @Trunky, I totally understand how you feel. Have they given you your PET results yet? I had a bowel resection in July 14 and due to cancellations and delays I had my liver resected at the end of October 14 and in my case (remember we are all unique) my liver tumor did grow from 4cm to 7cm in that time. I'm certainly not saying this will be the case for you and was informed that although there was a change in the liver met size, secondary cancer doesn't just 'hop' from one organ to another, it's the mothership and its aftermath that causes that, but I would certainly keep on chasing and would perhaps insist on speaking to someone who can be proactive and provide you with answers and as you say PALS is always an option too. Good luck and keep us posted :x::x:

Trunky

Hi All
They have told me the delay is due to staffing and availability of theatre as it's a da Vinci robot that will be used.
I think if I'd known this was the case I would not have consented to the robot and would have gone for the laparoscopic version of operation.
I feel again that I have not given informed consent to a procedure.

Bear G

It’s good you’ve found out the reason and does sound like it’s worth contacting PALS.
Is there an option to settings a laparoscopic op?
:x::x:

belinda66

@Trunky:

'They have told me the delay is due to staffing and availability of theatre as it's a da Vinci robot that will be used.'

That explains the delay a lot more. Do you specifically need to have the da Vinci robot for your surgery and can you change your mind? I don't know much about it.

Trunky

Hi @belinda66 - no I don't need the robot. I am one of their first patients to have this and agreed because they assured me that i would be in good hands. I also had robotic surgery on the bowel previously. I feel I'm in a no win situation now because if I say no it's likely to delay things further

1234annie
Quote from @Trunky:
Hi @1234annie - I have phoned the secretary several times but they are immune to the content of my conversation. I am considering raising this with PALS but I wanted to compare notes with others first to see if I was being unreasonable.

Do you have a cancer nurse you can talk it all though with? Maybe they can give you some ressurance. It could be the 'type' of cancer you had was slow growing so they feel it's ok to use these time frames. I would be like you and just want it gone asap!

belinda66

@Trunky

'and agreed because they assured me that i would be in good hands'.

Presumably being in good hands isn't the same as getting to surgery in a timely manner. Were you made aware of the fact that having robotic surgery would mean a longer wait? If not, and it doesn't sound like it, then you could mention that you had no idea you'd have to wait so long. Thus, you shouldn't be made to wait longer for ordinary surgery. Getting someone on your side can be useful: I know doctors don't like it when patients complain to their MP or others, but it can get results. If nothing else, it can help if there are more delays/cancellations and as you still don't have a definite surgery date, you need to get something confirmed so you'll feel better. There may be a Healthwatch in your area or some other health watchdog you can contact. Also, there are still targets that should be met with regard to start of treatment.

Charlotte Nurse Advisor

Thanks for the tag @Bear G ,

Dear @Trunky,

I am so sorry to hear of the delays you are experiencing. Whilst overall it is unlikely to have an impact on the liver secondary it does appear that you have not really been communicated with appropriately concerning this.

As yourself and others have said I would definitely contact PALS about this as whatever the impact or not on your disease the affect this is having on your psychological and emotional well-being is just has important.

I am also concerned that the delay in your surgery is due to the fact that this is being done using the robotic technique. Whilst advances in surgery have bought many positives I don't believe that this outweighs the benefits of having an equally effective laparoscopic procedure carried out sooner.

I do hope you are able to get some assistance from the patient liaison service.

With kindest regards,

Charlotte

Trunky

Thanks @Charlotte Nurse Advisor
I feel caught between a rock and a hard place because if I complain now to the doctor or PALs I don't want this affecting my operation date of the 1st of June. I know it shouldn't but something tells me to wait and let them know I am not happy after the op.

Charlotte Nurse Advisor

Dear @Trunky,

Words can't express how sad it is to hear that you feel your care may be compromised if you say something about the delays in your treatment.

Having worked for 30 years in nursing and the majority of that in colorectal cancer care I do appreciate how busy units are and sometimes how difficult and frustrating it is when you have patients who are waiting but not the capacity to treat them promptly. However, I always completely understood how anxious my patients were and did my absolute best to reassure them and sincerely hope that they never felt that they couldn't voice their concerns to me or any member of the team I worked with.

I really hope your operation goes ahead as planned in June (if not before) and wish you a very speedy recovery.

With kindest regards,

Charlotte

Trunky

Hi @Charlotte Nurse Advisor, @mem, @Bear G, @belinda66, @1234annie, @Gypsy, @KatieR, @Lizalou
Well I received a call today from the surgeons secretary asking if I wanted my surgery next Tuesday 29/05 instead of next Friday 01/06.
I queried why this was happening and she advised that she would get the surgeon to call. He called and advised that as I was 49, young and fit (the only time that's ever said these days! Who are they comparing me to?!😄) and following some deliberation they felt laparoscopic surgery instead of robotic was my best option as the met is encroaching on to my right lobe; and as they have only done 14 robotic resections of the liver so far they were more comfortable with the laparoscopic route ( I think that's a fair summary of what was said). He advised it would now be a different surgeon and that it was still surgery with curative intent.
We had planned around the June 1st date and were going to take my little lad away for a few days prior which we can't now. My health obviously comes first and hopefully we'll have lots of days in the future.
I still feel that I ought to write afterwards and let them know how having 4 dates put in front of you with 3 of these changed with little communication impacts your life both from a practical and psychological point of view.
Anyway that's the plan now; fingers crossed the surgery proceeds on the day.
Best wishes
Steve

Bear G

Hi @Trunky
Great that they’ve been able to get something sorted for you after all the messing around.
Are you able to do something fun with your son at the weekend? It’ll be good for both of you.
And I completely agree with you about making comments afterwards hoping that you’ll be able to stop this happening to others.
Big hugs
Bear
:x::x:

KatieR

Well...@Trunky Your head must be spinning with all the upheaval Next tuesday sounds good and ditching the robot sounds even better
All the best
Cath. :x::x:

GD62

Good luck and hope all goes well for you :)

mem

Hi, @Trunky, thankyou for your update.
So they have decided on laparoscopic now?! At least you now know, and more importantly, have a date! It was a very frustrating route for you to go through to get to this point when in theory, this could have been decided at the start. I agree it does need to be highlighted and hopefully, lessons will be learned (I hate the saying btw). For now, just you concentrate on your gorgeous little boy and perhaps bring your getaway forward? So glad you've got a date and good luck for 1st :x::x::x:

chris61

Hope everything goes well for 29th @Trunky and no more messing around with bloomin' dates. Best wishes.

mem

Oops sorry @Trunky, I meant the 29th too 🙈:x::x::x:

1234annie

Good news!! I can highly recommend a night at the Chessington hotel. I just got back from the weekend there and it was brilliant. My two have had the best time 😁
@Trunky