Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org

PLEASE NOTE THAT THE FORUM WILL CHANGE TO THE NEW CHARITY NAME, LOGO AND COLOURS FROM FIRST AUGUST 2018

Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Amber11

New here - Question about staging cancer

Hi, my Dad had some bleeding on and off for 6 months and then some abnormalities were picked up on his latest screening test, he had a colonoscopy straight away and they found several smaller benign polyps which were removed. Unfortunately there was also one that had grown large and although they successfully removed it, it was found afterwards to be cancerous. We were told it was moderately differentiated, which I think means a moderately fast growing / aggressive type of cancer?

At his follow up consultation my parents were told by the surgeon that although there was a good chance that it was caught early enough not to have spread, they would like to take the belt and braces approach and carry out an operation to remove that part of the bowel, this would give him a 98% chance of being cancer free if there was anything left. He would have to have a temporary colostomy bag while the bowel heals and this has put him off having the operation, he is very old school and stubborn!

The surgeon said they couldn't properly stage the cancer until this had been done, he seems to be latching on to the "good chance it hasn't spread and we've removed it all" comment and wants to take the wait and see approach with periodic colonoscopies and scans. My mum said the surgeon said if any cancer cells had been left behind it would not be a case of something showing up in his bowel again, it would have spread to his liver as secondary cancer before then. My dad says he does not remember this being said. Does this sound right?

We have so much to think and talk about as a family, I wish I could have been there for the appointment with my parents that day but I have young children and nobody else to care for them, obviously I couldn't bring them with me to the appointment. I feel like my parents are very confused by all the information given to them and things they told me straight after the appointment they have now forgotten saying, or have changed what they said at the time. My dad seems to have this figure in his head of there "only" being a 1 in 5 chance that any cancer cells have been left in there, which he said the surgeon told him, but he's only just mentioned this now and not straight after the appointment a few weeks ago. My mum doesn't remember this being said at all but she also admits she is confused by it all and tends to focus on all the negative, her version of the appointment was that the surgeon said if there are any cells left behind to spread, then it will go to his liver next and then only palliative care will be offered.

Is the resection operation the only way they can stage the cancer? Are there any alternatives to this operation like chemotherapy or radiation therapy, or a way to avoid the colostomy? Sorry if this all sounds totally naive but this is new to us and I'm trying to get my head around how everything proceeds to try and be helpful to my parents. I feel he's still in shock at the moment, but we are very worried he is saying he doesn't want to have the operation and all because of a temporary colostomy. Any advice would be appreciated :x:

Bear G

Hi @Amber11
Welcome to the forum. I’m sorry to hear of your Dad’s diagnosis but very glad it was caught so early.
Here’s a link to a booklet from Beating Bowel Cancer (who run this forum) that includes staging.
www.beatingbowelcancer.org/...owel-Cancer-Treatment-Pathway.pdf

Has he had a CT or PET scan to see if other organs are affected?

Big hugs
Bear
:x::x:

Kareno62

Hi @Amber11. Was there a nurse in with them for the consultation? I had a nurse sat in with me who then had a chat with me after and gave me some booklets. She was called a Colorectal Nurse and she used to ring me with appointments and provide general support. Perhaps if you could find out who that is at the hospital then your dad could authorise you to talk to her? :x:

Lizalou

Hi @Amber11

So sorry you are all having such a worrying time. My father had bowel cancer in older age and like your dad, he coped very badly with the whole embarrassing medical side. It does sound as if your mum has a better idea of what is likely to have been said and that obviously it makes sense to deal with the problem early. But I know from experience that dads can be very stubborn and 'head in the sand' about these things.

Has your dad been given a 'named' specialist nurse? He should be able to have one but you might need to phone to find out. It took me 4 months to find out about mine because in this area it is 'patient led' i.e. you have to ask.

So, sorry, not much advice but do keep talking and read the booklets together.

eyeofthetiger

Hi @Amber11 So sorry to read about your Dad's diagnosis and it is very shocking and difficult to try and understand/absorb all the information (or lack of it). I agree and think talking to your Dad's specialist nurse with some prepared questions would be a good place to start. I think knowing the right questions to ask is the tricky thing but you will get a lot of help from the lovely people on this forum. I have a temporary colostomy after emergency bowel surgery and I have adapted really well. They are so discreet and easy to use that nobody would ever have to know that he had one. Good luck with getting answers and keep in touch :x::x::x:

Tiffany

@Amber11. Gosh..sounds confusing doesn't it. I think we all felt very overwhelmed in the early days. I think it would be ok for you to request some information from his nurse or consultant and say that your parents are confused and need to know more. Once you have all the info in front of you it will be easier. However one thing I would say is that the best and only sure way of getting rid of cancer is via an operation. I wish my husband had had that option. I think your dad would be foolish to turn down this opportunity stoma or no stoma. The alternative is once the cancer is spread surgery is generally more limited and your dad could be classed as inoperable and incurable. Surely he'd rather have a stoma than potentially face a shorter life with limited options.

He needs to get on board and do what will ensure a longer healthy life. Most people go on to have successful reversals and one day he could be cancer free and a good story to tell the grandkids!

Wishing you all the best. Tiffany :x::x:

Baxter2

Hi @Amber11 and a very warm welcome to the forum from me too!

I agree with the advice given in the comments above but do feel that as a family, you should request another appointment with dads consultant surgeon or oncologist to fully discuss the findings and advice given. You should be able to request this via the doctors secretary relatively easily (as long as dad gives consent!) Just call the hospital and ask to speak with His doctors (whatever his name is) secretary. Prior to the appointment, you can compile a list of written questions to ask and write down the answers on the day. 3 pairs of ears will be better than 2 I’m sure. You may even be lucky enough to catch someone now before the bank holiday weekend?

There’s lots to take in at these appointments especially when feeling a little emotional and overwhelmed. Your dad may be feeling the need to play things down as a means of coping.

I wish you all well. Will you let us know how things go?

K ???❤️?

mr rusty

@Amber11 The docs will usually opt for the "belt and braces" approach, because that way they cannot be accused of doing too little, whereas you are personally free to play the risk/benefit game. The fact that the cancerous polyp was successfully removed without resection means it wasn't so big (prob less than 20mm). However because it was cancerous there is a possibility it has spread to lymph nodes from where it could migrate to liver/lungs etc. The odds-game is "has it?". It can only be properly staged once the lymph nodes are examined.

My tumour was 35mm - I had a resection and it had not spread to lymphs. From what I have learned resection in your(and my) situation is probably as close to 100% cure as is possible. If you don't have the op there is a chance it is in the lymphs - 1:5? do you feel lucky? The thing is, the docs can give you probabilities based on statistics, but for you the outcome is binary - success/fail, you have it/you don't.

If you don't do the op, you have a continuous worry going forward. If you do have the op, and the lymphs are clear, then happy days, just have to let the join heal and hopefully have the colostomy reversed.

DianeS

Hi @Amber11 and welcome to our forum. I can so clearly remember being told I had cancer and needed chemotherapy. I was a slightly different case to your dad, and you find every cancer patient is different as no two cancers are the same. It was only after my resection that I was told the cancer had also been found in a lymph node, and to avoid spread, it was suggested I had chemotherapy. I always had someone with me for oncologist appointments as quite often I switched off and completely forgot what I had been told. Personally I would do whatever it takes to stop cancer spreading but I know not everyone thinks the same. I hope your dad thinks clearly about receiving a clear diagnosis even if this means having the resection. Best of luck to you all Diane :x:

Caraeliz24

I was give. An initial idea of staging following CT scans and confirmation on pathology following chemo and surgery. I then had spread to liver , but principal staging had shown locally advanced tumour and pathology confirmed the lymph and vasucular invasion. They put me on chemo before the op so I wasn’t entirely surprised by the liver mets after surgery. Good luck with everything

Lady GT

Good evening @Amber11 .
You've had some very good replies above but none of this is easy, is it?
I just want to say a couple of things to throw into the mix.

* Yes, it's correct that a final staging can only be given after surgery. Colonoscopies, scans and x-rays can only give so much information, can only see so much. During surgery, the affected part of the bowel is removed, along with adjacent lymph nodes. These are then sent away for analysis and it is only at this stage that the presence (or absence) of cancer cells can be fully determined and a final staging given. If there ARE cancer cells in the lymph nodes then yes, there's a good chance that it might spread to liver or lungs before showing up in the bowel again.

* Your parents seem to be hearing things differently, which is VERY common. So I agree with others that you should try to seek an appointment, possibly with the nurse, so that you can all FULLY understand what the current situation is and what all the possible options are. How can your Dad make decisions when he's not in full possession of all the facts and only hearing what he wants to hear?

* I understand his absolute horror at the thought of a colostomy - Lord GT was the same. In our case, there was no choice. But if there HAD been a choice, I'm willing to bet His Lordship would have considered a 'watch and wait' approach. Which brings me to my next point ...

* Ultimately, once your Dad really understands everything fully, the decisions are his to make. This is a difficult one. But it's his life, his cancer and will be his treatment. I always see my role, as a carer, as supporting whatever choices Lord GT makes for himself, hard though that might be.

I really wish we could say, 'If your Dad does A B and C, he'll be fine.' But cancer doesn't work like that and there usually many grey areas. That is one of the hardest things to cope with. So your Dad needs to do what feels right for HIM.

As a first step, you all really need to gather some more information and really understand what all the options are.
As I said before, it's never easy.

But we'll all be here to support you in any way we can.
Best of luck and please do keep us updated.
:x:

Bear G

If the fear of a colostomy is the only thing that’s holding him back then it could be worth having a second surgical opinion as it’s not always necessary
(I had a very large tumour 20x6cm removed without even a temporary colostomy)
:x::x:

hello

Hello Amber,

Lots of really good advice here which is easy to identify with. A wee story which may help inform, at least -

My dad chose not to have the colonostomy op in the early days, and had radio-chemotherapy, initially very successfully and he was able to enjoy a holiday in the S of France. Then 3-4 years later he had brachytherapy, also to try and avoid ‘the bag’. This had horrid side-effects (faecal incontinence and associated extreme soreness), so much that he needed the op within 8 months afterwards anyway, and it did not remove the tumour. It took a couple of months to get used to the bag, but with the help of a male stoma nurse and a great phone-team, and now my parents are in a routine, it is manageable and dare I say better than before the op. That is the good news.

The not such fun news post-op: despite the stoma, he suffers from continuous rectal discharge which is very unpleasant for him and restricts him to a small distance from the house. This has not improved and is unlikely to (although it is much better than the faecal incontinence). I would suggest that your dad talks to the surgeon about surgical options to limit this side-effect (it’s one they all gloss over ...) - but you mention it would be a temporary bag? In which case, this particular side effect should be irrelevant as a long-term effect.

Something for consideration: 6 months after the op my dad has been diagnosed with metastases in lung liver lymph. Had he had the op in the early stages, would it have removed the tumourous cells completely and therefore the cancer would not have come back ... ?

Good luck to your dad with the decision and to you in your support of him, and may you all enjoy his healthy and happy life after this blip.