Low Rectal Cancer Diagnosis - newbie on here

Hi Rebecca,

Thanks for your message I do hope and pray that they can get you treated successfully. You are in the right place and I hope you come away with a decent quality of life.

Thank you for going into detail about your journey and hopefully you have covered some of the questions Annie had. I was struggling with the site last night I would type a long spell in the box and then it wouldn’t post. I had the same trouble last week which is so frustrating when someone is clearly on line and seeking information and you have trouble trying to get a response to them.

Kind Regards,

KevH

Thank you so much for all your responses last night it was so good to talk to someone going through similar things and with Rebecca too. I had my MRI this am - very scary when do you get results ? Things seem to move so slowly .. can the surgeon read / interpret these CT and MRI reports or only radiologists - would a surgeon know by looking ? 

Hi there, my partner was diagnosed with advanced low rectal cancer in February, he had to have an emergency stoma in March as the tumour was blocking his bowel. He has just finished a 5week radiotherapy course along with a 5 week course of chemo pills, it will now be a 2 month wait for the op. The waiting bit is the worst, but try to take each step as it comes. I wish you well xx

Hi Annie,  

In my experience, the surgeon, radio oncologist and medical oncologist are well used to interpreting and reading MRI reports and photos.    It was my radio oncologist who explained the results of my MRI and showed me the original size of the tumor and where it had broken out of the rectal wall and invaded the fat.   I had looked at the photos and hadn't been able to make head nor tail out of it.   When you visit the surgeon, don't be afraid to ask questions and get them to point out what they are able to see from the MRI.   The doctors want you to understand so you are able to make an informed decision.   

At first things do seem to go slowly, however, my experience is that the diagnosis and subsequent CT scans, MRIs and PET scans are so surreal that time seems to stand still.   Then you turn around and the first stage of the treatment is finished and on with the next.   I cannot believe how quickly the past 7 weeks have gone; surgery is less than a week away.   All in all, within 4 months since my diagnosis, I have completed 5 weeks chemo/radiation and will have had the surgery.  

Have you been given any indication that the results of your CT scan showed anything abnormal?   I had my first MRI after the colonoscopy; since then I have had another four and am having another MRI of the liver after my surgery to see if the metastases have remained stable prior to the liver surgery.      

I wish you all the best with your MRI and am hoping and praying that you get a good outcome.

Kind regards

Rebecca.        

Hi Rebecca thanks so much for your reply. This waiting for full diagnosis is so hard. 

What difference did it make if invaded fat ? I don't suppose they know that from the CT scan only MRI ? 

I hope the surgeon did read the abdomen scan correctly as stlll haven't reported from radiology on the abdominal one but have reported on thorax and lung but the surgeon looked at scans herself and said it "looked clear" ! 

Also confused about how low it has to be to avoid colostomy .. and are there any techniques to avoid ? questions so many 

You sound like it is going well Rebecca and you are steaming through the treatment ! What will they do with the liver do you know yet ? 

Best wishes and thank you so much for the support - my thoughts are with you as well 

Hi KevH,  

Thank you for your message;  I am terrified of this surgery and its consequences.  When the surgeon told me what needed to be done;  I told him I would rather be euthanised than have the surgery and a colostomy.  He told me euthanasia was not an option and went on to tell me that he knows Olympic athletes with colostomies and that I will be able to scuba dive and sky dive - as if!   I have finally come to terms with the fact that I have to have this surgery and that I have to do all I can to ensure everything goes well.  

This afternoon I had my first bit of good news in four months; the ultrasound showed that the clot in my leg had cleared; the blood thinning meds have done their job.   Tomorrow I am seeing the GP to find out whether I will have to have daily injections or just stop taking the meds 2 days before surgery.   Normally patients with DVT have surgery post phoned for three months but as my surgery is classified as urgent that is not possible.     

I am not sure whether my cancer is fast growing or slow growing like yours,  I know it is Adeno carcenoma and the surgeon estimates I have had it for 6 years.   When it is biopsied after the operation it will be tested to see if it is mutated or wild;  think it is called a KRAS bio marker?  If the tumor is wild the liver metastases may be treated with Targeted therapy - I am hoping this could be an alternative to liver surgery (still trying to avoid surgery!).

The medical team and the treatment I have received are world class.   I have 5 top specialists; not including the anesthetist; caring for me  and the Public health system has covered it all.   I have so much respect and trust in my medical team; they have been so kind and patient, answering all my questions and been caring, gentle yet firm whenever I mentioned throwing in the towel.  I know they are doing their utmost to ensure I have a good outcome and it is now up to me to do my best.  

Five days prior to the surgery I have 3 high protein drinks per day to drink; apparently they have been proven to aid in the recovery process.   Two hours before the surgery I have a high carb drink to take,  which is unexpected as I expected to have to fast for 6 hours.  

This is a huge learning curve and a very big adjustment.  As someone who has hardly had a days sickness in my life and never needed to take so much as an aspirin; being diagnosed with rectal cancer has been a huge blow and my worst nightmare. Hopefully I will get through it all and be one of the 25% who survive 5 years.  

Kind regards and best wishes,  

Rebecca.       

Hi Manda,  

I am not sure what operation your partner is having, but tell him to make the most of these 8 weeks.  It is now 7 weeks since my chemo/radiation finished and it has gone incredibly FAST!   My surgery is less than a week away and I am terrified.   I was diagnosed with stage 4 rectal cancer just after Easter.   I had been diagnosed with rectal cancer earlier but had lesions in the liver which were identified as metastases just prior to commencing chemo/radiation.     

After the chemo/radiation therapy my tumor shrunk by 60% however unfortunately it is still too close to the anal verge for the surgeon to get a good margin and I have to have it all taken out and will end up with a permanent colostomy.  How is your partner coping with his temporary stoma?   I am not sure how I will cope with a colostomy; how it will affect my life, my diet or the clothes I like to wear.  

Before diagnosis, I had all the classic symptoms of rectal cancer; abdominal pain, bleeding from the rectum, tiredness, unexplained weight loss, change in bowel habit, the weird sensation of feeling your bowel hasn't emptied, and feeling full and unable to eat very much.

I wish your partner all the best for a good outcome;  unfortunately it is not a pleasant thing to be going through, but hopefully he will come through it all.    

Kind regards

Rebecca.    

hi rebecca.. i dont know what op he is having yet.. we will have to see what the ct scan shows and if the tumour has shrunk i guess.. he is coping well with his stoma, which will be permanent.. he hasnt changed his diet.. still eating spicy stuff, curries and the odd pint.. you can get underwear which disguise the bag.. nobody will know you have one.. hope it all goes well for you xx

Hi Annie,   

The waiting is a very difficult time.  When the GP sent me for the CT scan, it showed the thickening in the rectum and lesions in the liver.   I was then sent for an ultrasound of the liver which recommended further investigation of the liver.  

If the cancer leaves  the rectum and invaded the fat or lymph nodes it takes it up to a higher stage, from memory a stage 3? When the cancer has gone to distant organs; lung, liver, etc it takes it to a stage 4.  It is very good news that your lungs and thorax were clear.   One of the areas that rectal cancer commonly spreads is to the liver (as mine has done); when you next see your specialist, I suggest you ask if your liver was clear.   Hopefully it will be but it is best to make sure.  Thus far, I am not aware of any techniques to avoid; all my doctors have been very thorough, nothing has been left to chance and all my tests/treatments have been necessary.  

My tumor is 3 cm from the anal verge; the fact that the cancer was originally 7 cms and had left the rectum and invaded the fat means that there could be microscopic cancer cells still present which is the reason the surgeon needs to get a good margin.  I think they usually like to get a 5 cm margin; but I may be wrong.   It was explained to me by the surgeon that you only get one chance at this surgery and it needs to be done right to ensure the cancer does not return.  If I had a re-section and the cancer came back he said I would be in a worse situation than I am now; not a pleasant prospect.  That is the reason I need to have the radical surgery.  If my cancer had been smaller or stage 1 or 2, perhaps the outcome would have been different.   The surgeon had studied the MRI and the radiology reports; however the only way he could determine where the tumor was and decide on the best option was to do a rectal examination.

The three liver metastases are in the  same area; hence operable:  the largest is  2,8 cms.   The liver surgeon has requested another MRI (number 6!) in late July to see if there have been any changes.   If there are no new metastases the surgery will go ahead approximately 8 weeks after the bowel surgery.   I would love to avoid this surgery and have been investigation other options; radio frequency ablation, but was told it was not a viable option.  I am also interested in Targeted therapy but my cancer needs to be wild; not mutated.  The medical oncologist has asked for the tumor to be tested for the KRAS bio marker which will determine if Targeted therapy is an option.     

I hope you get some good news very soon.  

Kind regards

Rebecca.    

Wow Rebecca, you are so well informed and positive and I think it is so important to understand exactly the options and the treatment. It sounds like you have a fantastic team and it sounds extremely positive. I never knew that there were sub types of adenocarcinoma .. let alone wild or mutated .. 

did it look obvious oh the CT scan the liver mets or is it hard to tell as I keep holding on to the fact that the surgeon looked at he scans and said she thought liver looked clear ? I wonder how high it has to be to avoid a stoma but you know if it's necessary it is. What I can't get over is that I feel so well no weight loss no fatigue etc but something was so wrong inside.

Thank you so much for answering my questions and I am so grateful for your help as I am terrified 

Annie xxxx