MDT meeting today and anxious

I want to give you an update and ask for your thoughts and ideas.

we got a call on Tue to say my hubby had apt in 8 days time with surgeon.,we were disappointed it was so long away and anxious.  We rang the colorectal nurse to see if she could tell us anything...it had been 7 weeks since my hubbys abnormal screening test and we still knew little other than he had cancer.  The nurse was attentive and understanding and said she knew nothing but would see if she could get him in to see surgeon next day.....bless her she rang next day at very short notice and said get here as soon as, surgeon will see you.

we rushed down...full clinic, but were seen......

The surgeon told us the ct scan and MRI showed no  spread to liver and lungs which were delighted about......but then said the tumour is advanced and too big to safely remove and be sure no cells left.....so she said he is to have 4 weeks of chemo and radiotherapy to shrink tumour and then ct MRI after a further 6 weeks (as treatment carries on working.) ...then depending on resukts surgery then,,,,,she said sometimes it is best to do a stoma first, as treatment can make tumour grow and cause blockage and she doesn't want that......however she has refers him on to christies, for assessment for chemo and radiotherapy. She said they will refer back if stoma needed as she didn't have the reports with her.

we did not get staging etc and we didn't ask....there was so much to take in and we were high on adrenaline I think.....

does this all sound similar or as normal as can be.........we were hoping as it was caught at screening it would be small enough to just remove.....but obviously so very very grateful no spread to liver and lungs ...word advanced .....scary.

thank you all 

Hiprocess. Sorry for short reply but I’m off to work soon! Yes this is very normal. No spread is good news. 4 or more weeks chemoradiotherapy is normal to try and shrink the tumour so they can get it all away. My tumour was 9cm in from my back passage and 4cm in size (size is not a sign of seriousness by the way) and it shrink to 1cm after chemoradio. This meant the surgeon could remove the tumour with a clear area around it (called clear margins) and still rejoin the Bowel. I had a stoma afterwards to allow the Bowel to heal but it is also quite common to have one before hand to prevent a blockage.

The no spread is good news and it sounds like they’re hopeful of removing it all with surgery. It’s a lot to take in and I found I was going over things in my head afterwards wondering what things meant. Why not jot down the things that you’re worrying about and give your colorectal nurse a ring for reassurance?

Things will feel a better once his treatment plan gets going and you can start the process of getting this tumour in the bin

Take care

Karen x

Thank you Karen....I think that is what I wanted ....the tumour in the bin!!!!

i know I need to hold on to the no spread.....and stay positive.....xxx which I am doing and one day at a time...x.

Hi Process that sounds very encouraging doesn't it and radiochemo is very doable and can yield some amazing results in terms of shrinkage or more of the local tumour. So it's a good plan. The nurses will tell you all about what you need to do to protect the area like creams etc.. I was told that about a possible temporary stoma prior to radio chemo in case it blocked but I didn't need it in my case. Are you at Wythenshawe ? As you mentioned Christies ..keep positive and on this forum ! ? Xxxx Annie xxx   

Thank you Annie...no not at wythenshaw, we will have to travel each day to Christies...about 40 miles I think but within Christies catchment area....i.e. greater Manchester did you go to the Christie.?

Thank you for your post and encouragement it sounds like you have done the josurney already....xx

Hi Process yes I've been on the journey already.. and what a journey ! but had the most fantastic support on this forum from many many wonderful people. 40 mins ! No worry it is worth it .. I sort of made it a bit of a routine .. and as said it is very doable and as Karen said can yield some amazing results ..I had a complete clinical response where it reduced to no "detectable cancer"  (it just did predictive text and changed clinical to criminalThink is more like it ) so.. lots of good options as Karen said any shrinkage is good for any potential op.. do message me if you need anything .. xxx Annie xxx 

Wow Annie what a fantastic response to treatment the surgeon said yesterday that sometimes happens it is good to hear from someone that that actually happened to, thanks for offering continued support it’s much appreciated xx

Good news on the fact that it hasn't spread to the liver and lungs. As I have said before I had stage 3 rectal cancer which means it had spread outside the bowel wall into the lymph nodes but nowhere else. I totally understand that you just want the tumour removed as soon as possible , I felt the same. I was told I could have 5 days radiotherapy and then an operation or 25 days of radiotherapy and then the operation. The oncologist said it must be the 25 days as the tumour had spread to the lymph nodes. I was given chemotherapy tablets to take on the same days as the radiotherapy which was 5 weeks , Monday to Friday.  I then had to wait to allow the therapy to shrink the tumour, in our are 6 weeks but upto 12 weeks in some areas. I was asked to go on a trial which could have been the 12 week wait. I didn't want to risk waiting so long so opted not to take part in the trial. It also meant more scans. As it turned out I waited about 9 weeks due to the surgeon being on holiday and on emergancy duties. I was offered the option of going to a different surgeon. I had a scan before surgery which showed the tumour had shrunk 'remarkably well'. I was told I may have a stoma if the bowel tissue was not healthy enough to rejoin which would be reversed 3 months later. I was fortunate that they managed to rejoin the bowel so no stoma which was a great relief when I woke up after surgery. I was in hospital for 5 days and took a few weeks to recover and months before I was anything like normal. I was 65 at the time. The biopsy of the lymph nodes removed during surgery showed no cancer. I am now into year 5 and have had no recurrence. My CEA markers are 0.9 which is normal. I feel very fortunate as I have had a good out come. So although things seem dire now you have to trust your oncologist and surgeon. I always found the colorectal nurse to be really helpful and would help in any way with advise and information. The radiotherapy is daunting but I found I coped with it really well and the fatigue was the worst side effect, I had no reaction to the chemo tablets , diarrhoea is one of the main ones but I had that anyway so didn't notice. The clinicians will talk you through every stage. If you feel you need support get in touch with the Macmillan charity they will provide support for you. To give you and idea of timescale, I was diagnosed on May 15th and had my operation on September 11th. Chin up and keep smiling, if nothing else you lose all embarrassment about talking about poo!

Thank you so much jd20 for such long reply with such a lot of hope wrapped up in there.im tired right now, feel bad because husband doing well, he has been out on long cycle ride today and I'm pleased because it helped him get time off from thinking and talking about IT.

i will have to pull my boots up and man up....tomorrow is a new day , thanks again xx

hi@ process, sorry to hear about your husbands diagnoses, as usual everyone has given you fantastic advice,if you click on my profile name you will see my journey so far, it is very similar to annies, if there is anything you need to ask after looking at my journey so far,just ask away, and all the the best to you two,   cheers    john.