Low Rectal Cancer Diagnosis - newbie on here

Hi Annie,   

It sounds as though things are moving along for you and I think you will have a good outcome.   The chemo/radiation shrunk my tumor by 60% which was a good result, however as it was 7 cm prior after chemo.radiation it was 2.8 cms.   Yours is just a tad larger than that and I am sending positive thoughts and prayers your way; hopefully you will have a complete response and won't need to have surgery; although they will probably still advise you to have it.  

I saw the Colo Rectal surgeon a week after the chemo/radiation finished; after he examined me he said the tumor was still too close to my anal verge for him to get a good margin and explained the consequences of doing the surgery and not getting a good margin; the cancer would invade my bladder, vagina, sacrum and the nerves to my legs; not a pleasant prospect.   He told me he could do he surgery by key hole and booked me in to have the operation on 3 July; 8 weeks to the day from finishing the chemo/radiation.  

When I got home and thought about it all, I came to the realisation if I didn't have the surgery I would be dead by this time next year - I was terrified of not having the surgery and terrified of having it and opted for the least terrifying option.  I have nothing but praise for my medical team and feel confident that the decisions they made were in my best interests.  

In your case, because your tumor is only 3 cms to begin with and you have no metastases I am confident you are going to have a good outcome.  You ale also in the UK where the Papillon treatment is more readily accessible - I would have had to have traveled from Australia to be assessed; I wasn't feeling well enough to take such a long journey;  also I may have traveled all that way and, because my tumor was so advanced to begin with, may have been told I was not a suitable candidate.  The other complication was the mets in the liver.    

The enlarged lymph nodes are concerning, my lymph nodes were also enlarged but did not show up as cancer in the PET scan.   I am seeing the medical oncologist this afternoon and am hoping to get the the pathology results from the surgery - it will be interesting to find out if the lymph nodes were cancerous.   From my research, rectal cancers are the most difficult to treat and the most likely to re-occur.   If you have a complete response and choose not to have surgery or if you opt to have Papillon treatment you will have to be closely monitored to ensure you do not have a recurrence.

I know of a lady who had rectal cancer over five years ago;; she had mets in her lung.  She had an APR and the mets removed from her lungs.   Her cancer was higher up and she was given a temporary colostomy.  However when the doctor wanted to do the reversal, she opted to keep the colostomy.    Patients who have rectal cancer and have their colostomies reversed often end up having poor control over their bowels, this lady has a high powered job involving lots of meetings and having to run to the toilet did not fit in with her working life.  She found her stoma easy to deal with and opted to keep it.   I am still getting used to mine and to be honest, do not like it at all!   However it is less than four weeks since the surgery, hopefully it will settle down as times goes on.  

One of the best tips I was given during my chemo/radiation was to smother the area between my buttocks with cream right down to your anal region;  that is the place where you will feel the burning the most - I also put the cream on the toilet paper before wiping my bottom.      When the side effects of the chemo/radiation wore off, I felt the best I had felt in months.  My appetite and energy returned and I was able to get back to my long walks and other activities.

I wish you all the best in your battle against the dreaded C,  

Kind regards

Rebecca.      

Hi Rebecca. 

So glad hear from you and that you are recovering well. You seem to have an indomitable spirit and that is so important, I believe. It sounds like you have considered all options very carefully and arrived at the best conclusions based on the evidence you were faced with. Sounds like you are doing amazingly with the stoma and facing it with logic and pragmatism which is the right attitude I know.. 

I hope nothing has spread in between diagnosis and treatment and that terrifies me so it is a relief to be having treatment for this invader. I may have no option but to have the surgery and that' does seem to be the one they urge you towards for all the reasons they told you. The Papillon treatment is literally down the road (more or less) so it seems something that should be considered but only if I am appropriate. Even so, they still seem to advise surgery even if tumour disappears ! 

It terrifes me about this recurrence rate. I wonder what sort of rate it does and how many are cured by treatment .. it doesn't seem clear to me yet? The stoma is obviously something a lot of people seem to prefer to the bowel issues and again I wonder how often people have the severe bowel issues after 

Thanks so much for relaying the decisions you took as it is unbelievably helpful to me whilst going through this .. also will be good to know re enlarged lymph whether just swollen or not? I believe the chemo rad can get rid of this in lymph as well ? Did the chemo rad have any affect on the liver?  , 

Cant believe you are in Australia- seems like you are right here .. you have clearly had an excellent med team and that has been key in making the right decisions. So pleased you are feeling better and getting strong for the next challenge that I know you will be up for.

Besr, and much love Annie xxxxx

Hi Annie,   

I had a very good report from the medical oncologist regarding the pathology results from the surgery.   It turns out my enlarged lymph nodes were free of cancer; hopefully yours are the same.   If my tumor had been smaller and I had had a choice, I would have chosen not to have the surgery and preserved my rectum, anal canal, sphincter and anus.  

My radio oncologist explained that due to the size of the tumor there could be microscopic cancer cells left after the chemo radiation which was why I was unsuitable for the TEM (microscopic surgery) and possibly the Papillon treatment,    The good news is that my abdomen is completely clear of cancer, no lymph node involvement and the surgeon got a good margin.  

The medical oncologist has ordered a third PET scan and I am to have my 6th MRI before I see the liver surgeon on 7 August.    He also said that the second surgery usually takes place 6 weeks after the first which means I have a mere 2.5 weeks before I have to face the next hurdle.  I have seen more doctors in the last four months than I have seen in the previous 20 years!

The positive is that during my 25 chemo/radiation treatment the mets in the liver remained stable and the doctors are hoping this is still the situation, that is why they are keen to do a liver resection as soon as possible and follow up with more chemotherapy to mop up any remaining cancer cells.  

The medical team are very optimistic about my prognosis; because I am otherwise fit and healthy they believe I have an excellent chance of beating the odds;  Stage four rectal cancer has a 25% five year survival rate.  

Meanwhile I am still getting used to my new 'friend', and caring for my stoma.  It is a totally different way of living, also being a committed 'Greenie' I am concerned that colostomy bags are not bio degradable; something for me to pursue down the track.

From what I have read, the majority of patients have problems with bowel problems after bowel surgery.  My father had rectal cancer the surgeon was able to cut it out and rejoin his rectum, he didn't have a temporary colostomy.  Since surgery he has not had the same control over his bowels and has accidents.   I suppose it is because the rectum has been shortened and not capable of holding as much waste.   The lady I referred to was told that she would experience urgency and would have to go to the toilet, due to her high powered job she decided to keep her stoma.    I have also heard that many people regret having the stoma reversal operation for the same reason.  One of my friend's husband had rectal cancer, and the surgeon created a pocket in the bowel called a J pouch which alleviated the need to run to the toilet.   

Thanks to the support of a package that was put in place to support me when I came home and my wonderful neighbours who have been taking my standard poodle for a long walk every day, I am managing quite well.  Last night  I even made one of my favourite comfort food recipes, cottage pie, though I cheated and used frozen mashed potato instead of peeling, cooking and mashing the spuds!   It is winter over here and we have been enjoying sunny 20-23C degree days, the nights have been cool, between 5-8C.   It is also extremely dry here;  we could do with some rain, particularly in the farming areas.   

I hope your chemo/radiation is going well and you are not having too many side effects.

Best wishes from Australia,  

Rebecca.           

Hi Rebecca 

you sound like you are doing fabulously. Your recovery sounds to be going exceptionally well .  That must give you a lot of strength. That cottage pie sounds delicious even with a cheat ! So great to have nice neighbours and we have a cockerpoo ! so yours must be bigger ? Or is a standard poodle smaller ? 

You sound like you are really getting to grips with your stoma and I have to say that is what most of the doctors have said about reconnection.,  your father had it too ? Is there any link .. 

Wow that is such good news Rebecca about the lymph nodes ? !!! How pleased must you be ? There is hope for mine then .. did yours originally show up on MRI ? did they say they were just inflamed at that point or did they say they may be infected ? I thought that they would be able to tell from the MRI clearly not .. so pleased for you that has got to be a great relief .. 

and the liver stable is good news and you are closer than ever to marching on to getting it sorted ? They sound a very competent and caring medical team. 

Yes Day 3 done on my chemo rad .. I don't seem to have any side effects yet but I believe they can be later in the weeks like week 2 onwards? I still have same discomfort from before - did you have that ? But people have said that they found the chemo rad made that improve/ disappear ..through the treatment . I don't know if you experienced that ? 

All my love and thank you your knowledge and help have veeb a great source of comfort and help to me .. 

xxxxx Annie 

Hi Annie,  

As the chemo/radiation therapy progressed and the tumor shrunk I began feeling better, I was having abdominal pain, loss of appetite and constant feeling of fullness.   Be sure you are generous with the cream, I used a product called Moo Goo and as I said I smothered it between the cheeks of my bottom right down to my anal area and I believe it helped a lot.  

The MRI showed that my lymph nodes were enlarged and the doctors thought they were cancerous.   An MRI gives extremely good images, however it cannot tell if the lesions, lymph nodes etc are cancerous.   The PET scan showed that the lesions in the liver were cancerous but not the lymph nodes.  However you have to have a certain amount of cancer cells in the area for them to show up in a PET;  microscopic cancer cells will not show up in a PET.   

I am seeing my Colorectal surgeon tomorrow afternoon; having an MRI of the liver the following morning.  I am not sure when the PET scan is happening - I am dreading the horrible injections involved!    I am seeing the liver surgeon on 7 August and anticipate the surgery will take place in approximately 3 weeks.

I am praying your treatment goes well and you have a complete response.  

Best wishes

Rebecca.     

Hi Kev, 

thanks for that I hope yours is going well.. 

yes, they said 12 weeks optimum time for complete response (if it is possible) but it does seem like a long time to me? So I will ask more. 

Back to day 4 today but have had no side effects from chemo  yet but maybe it builds .., did you have any idea if your tumour was responding over the 5 weeks yourself or not a clue until the scan ? 

I was just wondering what the negative is in having boosts of the contact radio in between, even if you may have to have surgery.. 

so pleased you are doing so well xxxx Annie 

Hi Rebecca, 

thats suvh good news re lymph glands. Especially when they more or less thought they were infected from the MRI .. It shows they don't always know ? 

Best of Luck today with the scan of liver. I will be thinking of you .. on to the next step hey ! Gosh that's quick to surgeon and surgery isn't it ! But that's good get it over .. ? What are the injections you don't like are they different .. ?

You aew doing  so well Rebecca I only hope I can have your resilience.. day 4 today ! 

Let me know how you get on today 

much love Annie xxxx

Hi Annie,

I had no idea what effect the Chemotherapy and Radiotherapy had done till the Scan was done. The Radiotherapy continues to work for a time after treatment has ceased.

Not sure how to answer the next question as once Professor Myint said it was doable I have tried to concentrate on the Positives. They do give you a good amount of documentation pointing out the positives and negatives.

I have suggested a site before called www.conactpapillion.com if you look at that site there are articles there that might answer the question much better than I can.

So far as your current treatment that’s taking place have they given you a ring binder. They did me which had a series of leaflets explaining what the treatments were aiming to achieve and possible side effects.

My side effects did tend to build up over the period the occasional too frequent visits to the toilet which they gave me some Loperamide tablets to overcome that and some other tablets for nausea.

 I didn’t have to go into the pills too often. Another side effect that built up from about 1/2 way through was a sore entrance to the bum which was more prominent when going to the toilet. But otherwise I sailed through without any other problems.

kind Regards 

KevH

Hi Annie,  

I survived the needle for the MRI yesterday.   They were unable to get the canula into the vein on my right arm and moved to my left; by that time my anxiety level had increased and it hurt like hell and continued to hurt even though the canula was in place correctly. I mentioned I was having a PET the next day and was dreading having to have another needle so they rang the hospital where I was due to have the PET and there had been a cancellation; so  they left the canula in, bandaged my arm and I went off to have the PET scan.   So pleased they are over and done with and I don't have to go through it again today.    

I will find out the results of the MRI and PET on 7 August when I see the liver surgeon.  I am anticipating that he will book me in for the surgery when I see him, they usually allow 6 weeks to recover from the last surgery before doing the next.   More needles, more pain, sometimes I feel that I am in my own private hell.   The liver surgeon will also put in a port through which the chemo therapy will be delivered which will save me from having more needles.    When I saw the Colo rectal surgeon, he told me that I am going to be 'off the streets' for quite a long time which I equated to being very unwell.   No drinking champagne and dancing on tables for me for quite a while!     

I am praying your chemo/radiation therapy goes well.  Although the radiographers do a CT scan every time before delivering your radio therapy the scan is used to ensure they are radiating the correct area and does not show whether the tumor is shrinking or not; - that is what they told me when I asked if they could tell if the tumor was shrinking.    It is very frustrating having to wait until after the treatment ends to find out if it has been effective; just stay positive and imagine all those cancer killing rays and chemo zapping and killing the cancer.   I even drew pictures that symbolised the cancer and the rays and chemo destroying it.   Stay positive.

Another perfect winter's day here; we could certainly do with some rain especially in the farming areas.    

Hope you continue keeping well,  

Best wishes,  

Rebecca.   

Hi Rebecca ! 

I didn't get your notification ! How are you ? So glad you got that over with ? How are you feeling now and what next steps for chemo or op ? I have now done day 8 ! And I am feeling no side effects as yet ?? ! It's prob all to come, when did you start feeling better from radio with discomfort ?.. I am starting to feel much less discomfort ? And more normal bowel m. But I am dreading the side effects starting. Please let me know how you are getting on - thinking about you., much love Annie xxxx