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k4444

Struggling

Hi everybody, my Dad has had tummy pains for as long as I can remember. I am talking 10 years on and off.

He saw his doctors who told him it was muscle pain and then he left it for years and then went back and got told it was muscle pain again. He has had ultra scans but nothing even popped up and his bloods were always fine.

The last year he has been in a lot of pain, he is a bus driver and took himself to the hospital in April whilst he was working as his tummy hurt so much. They told him he had kidney stones even though nothing showed up in the scan or bloods.

Two months ago he started getting a change in bowel habits, he could not go for weeks and then ended up going 10-15 times a day. They did a FIT test which came back abnormal (he only had one two months before that was clear as he turned 60 in April) and they fast tracked him for a colonoscopy.

On Sunday 11th Sept during the colonoscopy he was told about 10cm in there was a huge mass almost closing his colon up. They could not go any further and told him it looked really bad and to go and enjoy his life. They took biopsies and said he would hear by Wednesday. He never heard anything, Friday he had a CT scan as they wanted to see if it had spread. On the Monday he called and the nurse told him they were having a meeting about him the next day and she would call him once she had the results. Tuesday came, the hospital called to tell him he has an MRI scan at 6-30 today and that was it?

My family and I are totally devastated. My younger sister has not long beat breast cancer at 34 and now we have to go through it all again.

The fact the tumour is huge and blocking his bowel tells me it’s going to be stage 4 and I just know they are not going to be able to do anything for him as he has left it for years!! I am 39 with two kids who idolise him and I am dreading having to tell them about all this :x::x::x:

k4444

@Gypsy thank you for your kind words. It broke all our hearts hearing them say that to Dad. It’s made me think they can see how bad it is and how advanced it is and that’s why I have been so upset and thinking the worse. I really do pray he gets some good news and we get some hope I really do :x::x::x:

Gypsy

In my thoughts and prayers too @k4444. I had not known before what was said but I still hope for surgery and treatment for your Dad. Love Cathxx

k4444

@Gypsy Thank you. Do you think they can tell how bad it is just doing the colonoscopy.

They could not really do it as like I say, 10 cm in they could go no further. He did say to Dad he has no idea what’s behind it. I am praying it’s just the mass in the rectum and there is nothing behind it. :x::x::x:

Gypsy

@k4444, quite a few people have this situation where, because the tumour is causing a near obstruction, they can't get round it with the scope at the colonoscopy. It doesn't mean that surgery and treatment is not possible. Usually, a patient will have a follow up colonoscopy after the initial surgery to remove the tumour and that kind of completes the look at the remaining bowel. Everyone has a follow up colonoscopy at some point but the timing of it varies- different Trusts probably have different protocols, I don't know. For many, it is after one year and for some (like myself) it was at 3 years- but then, they were able to get right up in my diagnostic one so knew what was there. I don't think you should give yourself any more causes for stress. The fact that the doctor said that was just a statement of fact- he could not get the scope around therefore he did not know what was beyond it. That doesn't mean that he thought that there was something beyond it. I think that doctor should have said a lot less to your Dad, given the level of anxiety that he has caused for a whole family. I also think that the subsequent scans can give them a good idea about what is there as well. As far as I know, although it is possible to have say, 2 tumours present, that is unusual and most patients have the one. Others may read this and know more than me. Love Cathxxx

momentbymonent

Hi @k4444 just to give you my experience. At my colonoscopy, the surgeon couldn't get even the pediatric camera tube round as the tumour was blocking it. I went on to have surgery three weeks later and then three months mop up chemo as there was some lymph involvement. There was only one tumour though and it hadn't spread despite diagnosis taking 18 months and it being very large. I had a full colonoscopy one year later and it was clear. :x:

Stella 2020

Hi @k4444 , did your dad have sedation with his colonoscopy? As with sedation, memories and recollections can be varied. It does seems the doctor had spoken too much. Normally they only say things they are sure about and what is the very next step will be. Ie he found a tumour, suspected of cancer, camera can’t get pass. The patient will need further scans. I found it very surprising he asked your dad about drinking, and say such things about enjoy the rest of his life etc. The doctor in general should not speculate and certainly should not do so in front of a patient.
Hope you and your dad can find something to concentrate and take your mind off. :x::x:

k4444

@Gypsy Thank you, feeling stronger today which is good. We just hope we hear something today as they were meant to have their MDT meeting yesterday afternoon so fingers crossed 🤞🏻 :x::x:

k4444

@momentbymonent Thank you very much for letting me know that, I am so sorry you have had to grow through this but you have given me more hope.

I just can’t get my head around the fact it’s been two and a half weeks now and we only got told stuff at the colonoscopy, apart from that we have heard nothing. I know it’s just what has to happen but I am finding that part the headrest :x::x::x:

k4444

@Stella 2020 my Dad did have a little sedation but he remembers seeing the doctor after and my grandad went to pick him up and was allowed in with him and heard it all too.

To be fair I was totally shocked when mum told me, all they told my Dad was there was a very large mass that looks really bad and sinister and that they can’t get passed it or don’t know what’s behind it. He then said Dad would need more scans to see if it’s spread and at first mention surgery to get rid of the mass before it closes his bowel but then also said there will be a meeting taking place to see if any treatment will be offered? Then he said “do you smoke” dad said no and then he said “do you drink” dad said yes and he said “I like a drink too, go and enjoy your life”

I have no idea what that’s meant to mean. My Dad took it that it’s stage 4, likely to have spread and there won’t be anything they can do for him. It’s caused the most awful anxious wait these last two and a half weeks. I feel like there was no hope given, that’s why I am so desperate to hear from the MDT meeting as I think once we know what’s what we will be able to handle things better :x::x::x:

stevejl

Hi @k4444 there is always hope although it does not always feel that way, I was told that the only time there was not was if I was 90 years old(might look it:o but still 30 years shortB-))as the surgery would be to invasive.
Just hang in there
sending love & hugs
:x::x::x::x:

k4444

@stevejl I was thinking of you, how did your first day of Chemo go? :x::x::x:

jonsellers74

Hi @k4444

Sorry to hear your story but reading the replies you have had you have some great news.
I had a colonoscopy in May and told the the tumour in my colon and was about 10 CM's in. The CT and MRI gave differing views and it took some time for the MDT meetings to finalise the plan.

I eventually had a meeting with the surgeon who was amazing. He ran through the surgery and talk about how the tumour was in the colon and how this impacts the surgery.

He was very honest and calming.

The day after surgery in June he told my colon was totally blocked and I was probably days away from the colon exploding.

Due to the damage in the colon he removed a large section leaving me with stoma, although temporary and he will reverse it next year.

They did the histology tests in the lab and confirmed it as Stage 2 cancer. My nodes were clear and blood clear so they recommended chemo to clear any remaining elements in the colon. I am currently going through chemo now.

I like you wanted information and news every day and was eager to know the grading of the tumour etc. But now knowing what I know I understand that they had to do their test and follow their process to get the best care plan for me.

I am sure they doing this for your dad. The lack of news is the worst part as is the constant changing thoughts you will have.

Hope the news comes soon and you get the plan finalised. Sending you strength and thoughts. Take care all
:x:

k4444

@jonsellers74 Thank you so much for your post. I have been given some really good advice from this site, it’s helped me more than I can say.

I am sorry to hear about your BC but am so pleased to hear it was caught early and that your surgeon has been amazing. That helps so much when you feel looked after. My sister had that when she had breast cancer two years ago and she got amazing treatment.

Thank you for explain all that to me as it’s made me look at it differently. I do feel like life has just been put on hold for us since the 11th and we are desperate to hear more though I am now worrying about actually getting the news.

Can I ask, on the report my dad was given the day of his colonoscopy, it’s states on there twice “cancer found” Is this something that should have been done without a biopsy confirming it is cancer. I mean it must be if the consultant was so sure and even though he never said to Dad “you have cancer” be told him how bad it looked and that they need to see how far it’s spread? :x::x::x:

k4444

The hospital have just called my Dad, apparently they have booked him in for a another chest CT scan in two weeks times on the 9th Oct. No other information, just that?? He had one about a week abs a half ago? :x::x:

sabr

@k4444 hi on my report they also wrote cancer found without biopsy, I’ve just had my ct scan and mri and awaiting to hear about a plan still. I think they write that because sometimes they know what cancer looks like. That’s what I presumed. It’s so scary I still haven’t looked at the report properly scares me everytime. :x::x:

k4444

@sabr I am so sorry to hear you are in this position. I really hope you hear back from your CT abs MRI soon. Sending you lots of love.

Dad has just had another call from the hospital and they told him he has an appointment at 9-30 tomorrow morning. Mum got into a bit of a state and can’t remember the name of the department he is seeing but she thinks they said something and the surgical team. I am wondering if they will remove some of the mass as it’s nearly closing up his bowel :x::x::x:

stevejl
Quote from @k4444:
@stevejl I was thinking of you, how did your first day of Chemo go?

Hi
thank you.
So I got on board the Chemo Express train on Monday I won't go in to to much detail on what has been occurring with my body & chemo as is following the same pattern as the many posts already on that thread.

So Day 4 of chemo & been a tough few days but come off prescribed sick meds today.
Fingers still affected as weather makes everything cold to the touch sending nerves on fingers into spasm bit like an electric shock.
Energy levels have collapsed completely in last 12 hours as sleep patterns all to pot.
Otherwise no real issues have not had any throwing up or diarrhoea just very, very tired so either sleeping during the day or just sitting on the sofa watching TV.
Turned in to Mr Grumpy on Monday afternoon as had steroid injection prior to IV but soon passed but did not sleep so that has started the the energy issues.

Only 59 more days of chemo left which includes 21 days off meds to recover in between treatments.
Next IV due 18/10/
Have had to cancel GP appointments for knees & flu as GP cannot do on days oncologist wants them done so bit of a pain plus we have cancelled our weekend break as I will have PCR on the 15th then need to self isolate & as sepsis is always hovering in the background do not want to be away from area.

Feel really good re surgery recovery as almost all healed now & have no pain & bowels working well.

Hope all goes well tomorrow for your dad & mum plus you:):)
Take care
Sending love & hugs
Steve
::x::::x::::x::::x::

louise28

hi @k4444 Im sorry to hear this worry. I would just say a few things as been reading your posts and you do sound extremely worried...it is hard, every case is different and hard to not read into it all.

So, there is, as far as I know, absolutely no way a surgeon or gastroenterologist could tell the stage from a colonscopy. They may say the tumour is bulky, blocking etc, or has been growing a while, but nobody knows what it has done outside the bowel. Mine was nowhere close to blocking, but it had spread into nodes. As Siona says, hers was blocking, but the spread was less. So they just couldn't know! My doctor told me to enjoy my holiday and head off and drink lots of red wine as I was off to Spain the next day. I didn't really take it in bad taste but I could seee how someone would. Until there is a scan or surgery nobody will know what the situation is...

As for the chest scan. It varies. Some patients will get a TAP scan immediately (thorax, abdo and pelvis). In my case I just had abdo and pelvis and when that showed no spread, they waited a few weeks and decided to do the chest/thorax to be sure the lungs were okay. All fine there..... i dont know why they did it that way, but the urgency was seeing if it had spread to closest organs so pelvic and abdominal scans were prioritised.

Finally, i dont think a surgeon will remove 'some of' the mass. There is a possibility they will recommend surgery soon (depends on what scans have shown) if it is close to blocking. Or they could suggest a temporary stoma if your dad needs chemo or radio now. The stoma would stop the bowel blocking as it would bypass the colon/rectum. It's impossible to know until you go and see the surgeon what they are planning. It is hard, I know, the waiting is unbearable, but the team need the clearest picture so they know how to get your dad the best treatment!!!

:x::x::x:

k4444

@stevejl I am so sorry to hear you have had a rough couple of days. My sister had that in her fingers and toes ☹️

I am glad to hear your recovery from the op is going well though. Keep resting as much as you can. Will be thinking of you.

Thank you, they have moved his app not to Monday at 3pm. Never said anything about seeing the surgical team this time, they said a consultant and nurse will see him :x::x:

k4444

@louise28 Thank you very much for your post.

I have been so worried, if I am honest I am not handling it very well. I have stop crying which is a good thing and I have stopped googling stuff. I suffer with health anxiety and mine is based all around cancer and within the last two years my 34 year old sister had breast cancer, I have lost 3 people to cancer and now this with my Dad. I know I need to stay positive but I am honestly finding it such a struggle. I am working on it though and this site has helped so much.

Thank you for telling me about what the consultant said to you, I guess I never really looked at it in that way and I went straight to the worse case.

Yes sorry when I said remove some of the mass I meant to unblock it really as it’s causing a lot of pain. I did not know how the stoma bag worked so that might be an option they are looking at for him.

Thanks again for your post, it really does help me that I can vent to you all as I don’t really talk to anybody else about it

Dads appointment has been moved from tomorrow to Monday now at 3pm so I hope we get some more info then :x::x::x: