Probably a Malignant Ulcerative Tumour

I got the best advice from my endoscopist when diagnosed- he said don't think of the wider picture, just do the next thing we are asking you to do (scans etc) and if you  do google, only google those trusted sites (which you are doing!).  

The scans are fine-as far as investigations go, at least you are over the worst! MRI- just lie down, stay still and think of something else if you can- I just make stupid lists in my head,  equivalent of counting sheep! At worst, the CT may involve a bit of prep, but it's more like drinking a shot than those  huge colonoscopy drinks and you can still eat lightly during the prep.  It sounds like you have got yourself brilliantly mentally prepared and positive, which is more than most people can do..and the results/ treatment  may not be as bad as you fear.

I think we would all agree on here that the "not knowing" period is the worst, but they will move fast and get you into the next MDT after the tests.

Wishing you lots of luck...

Hi Lucy, 

Thank you for your reply mentally I'm prepared I think after last year having bit of a breakdown I became stronger from counselling and learn to be kind to myself. 

The waiting part is the longest part it feels it does take over a bit but I just keep busy by baking or watching a film. I'm glad the worst part is over with camera test I was worried about CT scan having it done think my first question to nurse was I don't have to take a laxative do I lol luckily enough she said no and it's just drinking water etc so I do feel better about it. 

Thank you again for taking the time to reply.... 

Hi Sicl45 and a warm welcome to the board. Hopefully the results of the biopsies will be back soon but it looks like they strongly suspect it to be rectal cancer. The scans will check to see if there are any other organs affected and once all the checks are done then the MDT will meet and decide on a treatment plan for you. Bowel/rectal cancer is notoriously slow growing and very treatable.

Both scans are completely painless. The CT scan will involve a cannula in your hand then you lie on a flat bed that moves forward and backwards into the scanner and will ask you to hold your breath for a few seconds. A dye is then inserted via the cannula - this can make your groin feel warm (a bit like you’ve wet yourself!) and a funny metallic taste in your mouth - it’s used to highlight the area being scanned. The MRI takes a lot longer and is quite noisy - there’s a lot of clanging and banging. You are almost inside a scanner so it’s a lot more enclosed than the CT. The radiographers will usually give you head phones to wear and you can listen to music - my last one also had pretty scenes showing above my head. 

Treatment for rectal cancer usually involves chemo radiotherapy (the chemo is a low dosage in tablet form that enhances the effect of the radiotherapy). Depending on whether they suspect any lymph node involvement then you may have a session of full chemo before having surgery to remove the tumour. It sounds a lot but the chemo radiotherapy can be very effective at shrinking the tumour meaning that the surgeon can remove it with a clear surrounding area. 

After surgery you may have a temporary stoma while the rejoin heals or a permanent stoma depending on how low down the tumour is in the rectum. 

Ive attached a link to a booklet below that I was given at my first meeting which may help with terminology etc.

https://bowelcancerorguk.s3.amazonaws.com/Publications/Bowel_Cancer_UK_Your_Pathway_V10.1.pdf

We’re all at different stages of treatment and recovery on here so please feel free to ask anything and we’ll give you an honest answer. I was diagnosed in 2016 and still ‘no evidence of disease’ - there’s next few months will be tough but we’ll help and support you through this

Take care

Karen x

Hi Karen062

Thank you for your reply and the information provided which is very useful, I had a feeling it was rectal cancer or suspected.  I feel a little more reassured now with the process of what will happen if it is.

I've heard that the MRI scan is very noisy but can have headphones, it will probably be something I would do and get some calming music on there.  That is good with CT how the dye is injected as this probably would be better for me due to struggling with taking liquids.

Thank you for the booklet you provided I will be sure to read this as I like to be prepared so nothing is a surprise, I've suspected from seeing my GP that it was likely to be cancer and I did this for my mental health so when the results are in it's not a shock and if it turns out to be something else it's a weight of my mind.

My main issue at the moment is going to the toilet as I feel like I need to empty but nothing comes or I end up with pain which lasts a while or is there all the time. I've also noticed that in my testicles it's mainly the left one where I get a dull ache which is uncomfortable sometimes but on the right, there is a small Pimple I've not noticed before but  I do wonder if it's me overthinking (which I can do, I will mention it to the nurses so that they are aware of it.

Thank you again for the information, and I am pleased that there is no evidence of the disease with you, I know the adventure I'm to go on is not going to be easy but after everything life has thrown at me I'm ready for this final fight and I hope in a year time to be saying "I beat it and it didn't win" 

Many Thanks again

Simon x

Hi Sicl45 , I was diagnosed with a tumour in my rectal sigmoid region 2 weeks ago. I had my CT and MRI scans last week. I can honestly say from my view point there was nothing to worry about in terms of the procedures. 

As per Kareno62 excellent post the CT just involves a cannula and some dye but doesn't hurt at all. I was just told no food 2 hours prior to it. Mine lasted about 10-15 mins.

The MRI was not too bad either as once you lay down and have the ear plugs and headphones in the time just flies by whilst listening to radio 2. I think I may have nodded off as it seemed quite quick !

I am now awaiting my MDT this Wednesday so appreciate the anxiety and worry you feel as I too am feeling this. I have just tried to keep busy as nothing I can do to influence any outcomes and need to focus on what I know now not the what ifs.  I am also told to fully trust the medical team as they are brilliant.

Best of luck with everything.

 Kareno62  thank you for putting this post up as it's massively helped me as just having my normal anxiety hour!  

I am going into the MDT meeting week so potentially on Friday I find out my treatment plan. 

Obviously in my head I have all sorts of thoughts mainly starting at the worst case scenario but I have had such great advice on here I try and revert to that ie no Google, think positive and keep busy.

Posts like yours massively help so thank you .

You’re very welcome Forest76 These early days of waiting for scans and results are very stressful but once you have a treatment plan in place then things will honestly feel a bit better.

You sound to have a good handle on things - keeping busy, not googling, getting outdoors - which is great. Little wobbles are expected but we’ve all been there so lean on us and we’ll help and support you through this. 

Take care

Karen x

Hi Forest76

I'm sorry to hear about your diagnosis I wish you the best in your treatment, I've now got my CT Scan (Thursday) and MRI (Friday), and from all the advice given here, I'm feeling more relaxed about them.

I hope the MDT meeting goes well for you, the anxiety is a bad part as I was anxious before any of this came along, but I've been keeping busy and not looking anymore for answers and I'm in the view it is what it is and well nothing I can do can change it until treatment and I go come on cancer get in the ring whilst we knock ten colours out of you and say goodbye ( sorry my way of being positive).

Personally, with the MRI, I am better off with something relaxing if they put my songs on it's likely I will end up dancing and singing and no one needs to see or hear that LOL but saying that I do like a little sing-song and one song I've chosen for this little adventure is "My Way" as no matter what happens I will do it my way - which is to fight all the way.

I wish you all the best with everything 

I have never been offered music at my MRIs (I'd be the same though, would be a singalong...) - have been stuck making my boring lists in my head.  I feel deprived now!

If you have radiotherapy, you probably will get a song to accompany it (You are in there for about the length of an average song). It was always the radiotherapists' choice and sometimes really inappropriate, which used to actually make me laugh!  But My Way is a great fighting spirit one...

Excellent news, once the CT and MRI are done you then know you are starting your recovery. 

My attitude is the same as you as I cannot influence anything now so will deal with whatever is in my way as I have to.

I am hoping after the MDT tomorrow I get a call for a Friday clinic appointment as otherwise it's Tuesday. I now just want to get cracking with whatever treatment I need.

After 2 weeks I now look at things differently. Initially I felt like it was a dream and felt almost angry that I was all ok and feeling well but had uncovered a problem by doing a medical. It has taken away two holidays booked and a few nights out with mates! Now I am viewing this as getting my life back once I get through treatment then I can hopefully do all that again. It's the massive carrot that dangles and I am aiming for. Different things for different people but I need something to aim for.

Good luck with Thurs and Fri and good luck with the tune selection !