Just diagnosed

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gmg

Initial diagnosis questions

Hi, all. So I've received an update from the hospital yesterday after two weeks of waiting and the colonoscopy. I was told that the initial diagnosis is Stage 2 (T4N0M0). The tumor is in the upper right quadrant and I was told that tumors in the right side of the colon can be quite bulky. Surgery is the way forward but I need to do an ultrasound next week to check whether my bladder is compromised just so they can remove it at once when they take the tumor off. It will be a keyhole surgery. I will be meeting the surgeon on 12/13 October to discuss the surgery and I am trying to write some questions up about the surgery (and after) which I was hoping to get your inputs on, or whether there are other questions that I should be asking:
1. Do I need a stoma?
2. Anemia - what is the treatment plan for this?
3. How will they remove the bulky tumor if it is a keyhole surgery?
4. What are the chances that they switch to open surgery when I'm already in the operating room?
5. What are the factors that will make me do chemo after the surgery?
6. Is this the most common and effective treatment plan for this diagnosis?

Appreciate all your inputs.

Lirio345

Morning @gmg, I have popped a link to a BCUK publication in case it is of help. I hope your appointment goes well. Will you be able to have someone with you who can take notes, if not I suggest asking if you can record the discussion. Take care, Kim :x::x:

www.bowelcanceruk.org.uk/...ur-publications/questions-to-ask/

MysticLooRoll

@gmg - sorry to hear about your diagnosis, but it’s good that you are thinking ahead about questions to ask. There’s a link to other questions you may want to raise on the website - link below.
www.bowelcanceruk.org.uk/...ancer/diagnosis/questions-to-ask/

As for your current list of questions, I’ve put my thoughts below, following my own experience.

1. Can’t answer whether you will need a stoma. It will all depend on the position of the tumour, how much they need to take out, if your bladder is compromised, and what they see when they open you up. If you are a likely candidate for a stoma, I think a stoma nurse is usually in touch before to measure you up for the best position.
2. Anaemia is treated by iron tablets/supplements. I have been taking iron supplements. Severe anaemia is how I ended up finding out I had cancer in the first place.
3. They will make a few different incisions to the abdomen and use different tools to cut and remove the tumour from there. If you are wondering about the specific equipment they will use, just ask the doctor.
4. They can’t know this for certain until they open you up using keyhole surgery first. What I will say is this, they do their best not to go for open surgery unless they have to. Keyhole is less invasive and you recover more quickly.
5. Size of tumour, if it’s spread to anywhere else (such as lymph nodes and other organs), your age and other factors will all affect if chemo is recommended. My tumour was in my colon and lymph nodes, so I am on chemo now.
6. I think you would have to ask the doctor this, but it seems to be the most common plan (from my own experience and reading other people’s experiences on this website). Everyone is different, though. No two patients will have the same experience or treatment plan. Some people need chemo first, then an op then more chemo later. I went for surgery first and am now on chemo.

Take care of yourself. Try not to worry too much. Take a notebook and a friend/trusted person if you can. It will all help you later.

gmg

Thanks, @Lirio345. I'll plan to have a friend join me as we're still processing my mum's visa to come over and look after me when I get the surgery.

gmg

Thanks for taking the time to respond to all my questions, @MysticLooRoll. Very much appreciated.

How are you getting on with your Anaemia - they also prescribed iron tablets, did you do iron transfusion?

MysticLooRoll

@gmg - my anaemia is still being monitored. It was bad before the op, and following the op my blood levels have been checked and I am now back on the iron tablets. No iron or blood transfusions needed so far. The tablets aren’t bad - it’s just a matter of getting used to taking them. Iron levels can take a few months to get back to normal, depending on how bad the anaemia is.

Hope all goes well with your appointment. ☺️

Stella 2020

Hi @gmg , from my experience, have the list of the questions ready. But if you let the consultant goes through the whole thing first, you probably will have all these area covered. Maybe the most important question is how many cases has the consultant treated on an average year, does he/ she fully confident about treating you successfully.
I found the associated risks and operational details such as stoma, open instead of keyhole not so important, because there is no real alternative but to have the operation.
I personally feel the real question is do you believe this consultant is the best person to carry out this treatment for you.

Mrs ALS

Hi @gmg you've been given a lot of good advice. All I would add is that even after all your tests and scans once they actually set eyes on your tumour plans can change. In my case I was put to sleep having been told I would have all my pelvic organs removed, a procedure called pelvic exenteration, or clearance. This meant I would require two stomas, a colostomy and a urestomy. When I came round I had no stomas at all! Needless to say I was delighted. Hopefully things will be very straightforward for you, and you will make a speedy recovery being so young!
Take care and best wishes, Louise :x::x:

Ninatoo

HI @gmg . Anaemia was one of the markers that alerted my GP to the possibility of cancer. I wasn't treated at all for it before my operation and in fact it took four months after my surgery to decide that it was serious enough for an iron infusion. My GP thought I had perhaps lost a lot of blood during the operation but then if that was the case I would have thought they would have dealt with it immediately following surgery. I was amazed at how much better I felt after it. They tell you it will take a few weeks to feel the effects but I felt great within 24 hours. I was also on tablets for a while before the infusion but they didn't really make a significant difference. Good luck with your appointment.

Wegwe

@gmg my experience is very similar to Stella’s.
Some additional things you may want to ask about because they are not the same for all hospitals, so other people’s experiences may not be very helpful there: do you have to take any covid-related precautions? What do bowel preparations will you have to do? Will you be admitted on the day of surgery or the day before? What will be your folllow up after surgery?

Good luck with the appointment and surgery!

Jen123

Hello @gmg firstly really good luck with the op. From my experience I was referred for the 2WW as went anaemic on top of tummy pain, weight loss and change in bowel habit, they found my tumour at colonoscopy. I had a right hemi colectomy. When I saw the surgeon initially he sent me for two iron infusions (one week apart) to bring my levels up to an acceptable level prior to my op, no tablets. He said I may or may not need a stoma and on the day of surgery was marked just in case but it turned out I didnt need one. Like you from the CT scan they thought my bladder may have been affected so I had a stent fitted between my kidney and bladder to stabilise it, luckily they tumour was not attached to it and the stent was removed a couple of weeks post surgery. He did the op key hole but did need to make an 8cm incision but get the tumour and right colon out but actually the wound is very neat and am sure the scar will fade with time. They had told me that I would need chemo from the get go so am currently half way through 4 rounds of CAPOX. So really as everyone has said we are all different but your surgeon will probably answer all your questions before you even ask, mine was lovely and experienced so I felt in very safe hands, hope yours is the same, good luck once again, much love and a big hug Jen 💖🤗😘

gmg

Thanks everyone for the inputs, very much appreciated. ❤

Sally South Downs

Holy moly Mrs @ALS !!!! How wonderful ! One stoma quite enough I assure you - but had you had the double I think you could have gone on to be an ace plumber ….