Low Rectal Cancer Diagnosis - newbie on here

t is very low down apparently they say they need 2cm and they not sure they've got it which is why they are talking about radiotherapy EBRT ? First to shrink ? Very scared as can't imagine a colostomy .. mine is 3-4cm but they didn't seem to think it fitted papillon ? How quick did you get treatment from diagnosis - thanks so much Kev -how long are you into this seemingly awful journey 

are your Lymph Nodes affected or any organs?

KevH

I did create a slight bit of delay by asking for a referral to Professor Myint but I saw him about 2 weeks after I asked to be referred. I then had to go back over the following week to have a fresh MRI done as he wasn’t happy with the clarity of the one I had done at one of my local hospitals and then it took 3 to 4 weeks before I started my course of Chemotherapy and Radiotherapy which finished on May the 18th. I start my first dose of Papillon treatment this Thursday assuming I have 3 doses at a couple of weeks apart and it is responding well I could be clear of treatment by end of July.

Your diagnosis sounds similar to mine I would have a look at the contactpapillon.com site Professor Myint has some articles on there and if you think you fit into the perimeters outlined in the articles You can then ask for a referral.

I was told by the Oncologist from Saint James that it wasn’t the Gold Standard but they supported me in getting referred anyway but he did comment that I had done my research. I had read the articles written by Professor Myint and armed myself with questions based on the articles he had written and the criteria. The answer I received met the criteria so I pushed for a referral.

I apologise for the sluggish responses but I think there are problems with the site again and I am having trouble posting I am having to log out and back in again and then having to retype my response again and trying to re post.

KevH

CT clear but not had MRI yet , were you clear .. can they tell from CT ? 

Not sure what they can see with CT scan. The images they were sharing with me were from the MRI scans.

I had a CT scan then an MRI and a camera up which they went all the way round the colon and bowel and on the way back they took some biopsy nipping off the suspicious area which came back inconclusive but the day they told me that they requested me back in the next morning for a procedure under anesthetic and took a slice off for another biopsy. 2 weeks later I was called in and given the diagnosis that I had low rectal cancer. That was a Thursday and I was to go in the following Tuesday for the gory detail and what the next steps were. It was at that appointment I was shown the MRI scan which showed the tumour. 

KevH

Gosh does this thing get actually cured ? Couldn't they see it on the colposcopy then? That was lucky they persevered   You sound positive Kev/ that's so good - I suppose I've got that MRI treat to come.. did you say you had any chemo ? Thanks 

Hi Annie, 

I have been reading your posts and know how afraid and unsure of everything you are.  I was diagnosed with rectal cancer in early March.   The previous doctor had told me I had hemorrhoids and I was treating myself for that condition for over a year.  When my symptoms were getting worse, I changed doctors.   First the new GP sent me off for an X ray of my abdomen, a blood test and thought I may be suffering with constipation; although I have never had constipation in my life.  

Next, Doctor told me I needed to have a colonoscopy and sent me off for a CT scan; if something showed up in the CT scan I would have top priority for a colonoscopy.   The day before the CT scan, I was so unwell I had trouble walking around the shopping centre; normally I am a shop till you drop kind of person!  

Doctor got the results of the CT scan the same day and rang to say she wanted to see me.  No sooner had I gotten off the phone when it rang again; this time it was the Colorectal surgeon's office to say I had an appointment to see him.  I remember thinking; 'OH SHIT!   The CT scan showed a suspicious thickening in the wall of the rectum, which to me looked like a dark shadow.  The GP told me it was most likely cancer, as did the colorectal surgeon who booked me in for a colonoscopy the next week.   The surgeon also told me he could remove it and I would not need a colostomy, which was a relief.   

After the colonoscopy, the surgeon told me it was cancer as suspected but larger than he expected - the CT scan does not provide a lot of detail.   The surgeon told me I would need to have 5 weeks of chemo/radiation therapy to shrink the tumour, followed by surgery where I would have a temporary colostomy which would be reversed later.  He then sent me off to have a staging MRI.   

Then I met the radio oncologist and the medical oncologist who outlined the treatment and the risks.   The CT scan had also shown some lesions on the liver; my GP had sent me for an ultrasound of the liver which said the liver needed investigating.  The radio oncologist ordered another 2 MRIs; one of the liver and one of the abdomen.   The medical oncologist ordered a PET scan. Unlike the CT scan, the MRI provides much more detailed images, however an MRI cannot determine if a tumor is cancerous.  The PET scan images are not as detailed as the MRI, however the PET involves having an injection of a radio active glucose solution. Cancer cells take up the glucose and glow green, which confirms the tumors are cancer.     

On my first day of chemo/radiation therapy, I was told the cancer had gone to my liver and I had 3 metastases, thanks to the MRI they were able to tell the exact size and informed me they were operable.    I finished my chemo/radiation on May 9 and came out of it pretty well,  the chemo was delivered orally via 6 tablets per day and the radiation was external beam.   I was fortunate not to have too many side effects; gastric, radiation burns, nausea in the first week, thinning of my hair and my mouth was dryer than normal.  

After the chemo/radiation I was informed the cancer had shrunk by 60% and the metastases in the liver had remained stable (this treatment only treats the primary tumor; not shrink liver metastases).     A week after the completion of chemo/radiation therapy, I returned to the colorectal surgeon who examined me and told me the tumor was too low for him to get a good enough margin to ensure I would not have a recurrence, he told me I would have to have my rectum, anal canal, anal sphincter removed and will end up with a permanent colostomy.   Naturally I was not happy with this news.   My surgery was booked for exactly 8 weeks after the chemo/radiation finished.  

Surgery is now looming; Tuesday 3 July.   How fast the weeks have flown!   Two weeks after the chemo/radiation therapy, I was feeling so much better, my appetite had returned, no more gastric and the radiation burns had healed.  Then I noticed my left leg was sore, the next day the pain had become so intense that I could not bear any weight on it.  When it didn't go away, I went to the GP who sent me off for an urgent ultrasound which confirmed I had deep vein thrombosis.  The GP put on blood thinning medications 4 tablets the first week, which were reduced to 2.  

The pre-op was on Friday; I was at the hospital for 3.5 hours!   The anesthetist is extremely concerned about the DVT and had to consult the hematologist, the surgeon and my GP to work out a plan of action.  Normally a patient with DVT would have their surgery post phoned for 3 months however my surgery is classified as urgent and must go ahead as planned.  I am having another ultrasound of my leg this afternoon and an appointment with the GP tomorrow to discuss the findings.

After I am recovered from the bowel surgery, I have to have a wedge cut out from my liver followed by more chemo therapy;  2018 is turning out to be a really crap year!           

Since March, I have had a very traumatic journey; the news getting worse and worse,   I have never had a day's sickness in my life and now I have a potentially terminal illness; the five year survival rate for stage 4 rectal cancer is 25%.    This time next week I am having my surgery and am terribly afraid.   Due to the DVT, I am classified as a high risk patient; I am afraid of the pain and terrified of having to deal with a colostomy bag.   How I wish I had done my bowel screen tests; if I had, I may not be in the situation I am.    

I wish you all the best for your journey.   Although every case and individual are different; sharing my journey may help you to better understand your own.  

Love and best wishes from Australia,  

Rebecca.     

Hi Kev,  

I also have rectal cancer, my tumor is low down, 3 cm from the anal verge.  After five weeks of chemo/radiation therapy, my tumor shrank by 60% and ended up 2.8 cms instead of 7 cms.   Instead of completely encompassing the rectal wall, it is now only 25%.  The cancer had left the rectum and invaded the fat and some of the lymph nodes were enlarged, although they didn't show up as having cancer in the PET scan.   

When I saw the colo-rectal surgeon he examined me and said that it was too low for him to get a good margin and I have to have it all removed and end up with a permanent colostomy.   Suffice it to say, I am devastated.   I have metastases in the liver and have to have a liver resection after the bowel surgery, followed by more chemotherapy.   

The surgery is due on July 3,  just 7 days away!   Two weeks after chemo/radiation, I developed deep vein thrombosis, apparently a complication of cancer,  and am now taking medication to thin my blood.   This afternoon I have to have an ultrasound of my leg to see if the clot has cleared for the medical team to come up with a plan; normally surgery would be post phoned by 3 months, however mine is classified urgent and must go ahead regardless.   

You had a wonderful outcome from your chemo/radiation,  I wish my tumor had disappeared, however being so large to begin with, it was probably too high an expectation.   

The Papillon treatment is unavailable in Australia, although something called TEM (Transanal Endoscopic Microsurgery) is.  Unfortunately, due to the original size of my tumor and because I am relatively fit and healthy I am not a suitable candidate.   The radio oncologist explained that TEM is used for people who are not suitable for surgery to give them more time and it is not considered curative.   

My surgery is being done  via laparascope which will mean a quicker recovery time; unfortunately however I am going to end up with a permanent colostomy.   

I wish you all the best with your treatment,  

Kind regards 

Rebecca.  

Hi Rebecca 

Thank you so much for telling your story. It sounds like you are in very good hands with the treatment plan and the can operate on the liver ? I'm just starting this journey and it is really helpful to hear all the different experiences. Did you feel unwell when you were originally diagnosed ? It is so scary how everything happens so fast. I didn't know TEM was not appropriate I thought it was a new technique.. I wish you so much hope and success in this next stage - you sound very strong .. did they tell you results straight away with CT and MRI

Hi Annie,  

I had a bleed from the bowel in August 2016 which went away, I went to the doctor the end of that year who diagnosed with hemorrhoids and for almost a year I put the symptoms down to that.   Towards the end of 2017, I was feeling unwell and had to push myself to do anything.  I could hardly be bothered putting up the Christmas tree; very unusual for me.  I chastised myself for being lazy and unmotivated and pushed myself.    

After Christmas when I was still feeling unwell, I went to a different doctor who sent me off for the X rays and tests.   The day before the CT scan, I dropped my dogs off to the groomers and had 4 hours to spend in the shopping centre.   I was so unwell I could hardly be bothered even walking around - again very unusual as I am normally the shop till you drop type.   

As soon as the doctor got the CT results and saw the thickening in the rectum, she rang the colo rectal surgeon and got me an urgent appointment.   When I went to see her she told me it was cancer and when I went to see the surgeon, he told me the same thing.  I was still hoping it wasn't cancer, however after the colonoscopy the surgeon told me it was definitely cancer and the results of the biopsy confirmed this.   I had the first MRI done after the colonoscopy for staging the cancer.   The MRI gives a lot better pictures than the CT, the doctors can see the size, shape of the tumor.   

By the time I was diagnosed, I was feeling very unwell and had ALL the classic signs of colorectal cancer;   abdominal pain, change in bowel habits, extreme tiredness, weight loss, the feeling of never fully emptying my bowels. bleeding from the bowel and a constant feeling of fullness and not being able to eat very much.  I have heard many times that red blood in your stools does not mean cancer which is not strictly correct.  Although bright red blood in the stools is a sign of hemorrhoids among other things, it can also be a sign of rectal cancer.

I have been told the metastases in the liver are operable;  there are 3 of them and they are all in the same region.  I am booked in for another MRI on 26 July 2018 to determine if they have remained stable.   When I had an MRI at the end of chemo/radiation therapy the metastases had  not grown and no new ones had appeared which was a good sign.  The doctor says they are operable.   

I am trying to remain strong, but i am scared to death of what lies ahead.   

I wish you all the best on your journey and am glad I was able to help you by sharing mine.  

Kindest regards 

Rebecca.