Low Rectal Cancer Diagnosis - newbie on here

Hi Gail,   

That must have been devastating, particularly because you are so young.  How are you coping?   I have been spending a lot of time at home crying,  and have had psychological counselling to help me accept and deal with the diagnosis.  The counselling was a great help; whilst it cannot remove the situation, it helps you get your head around it all and I would recommend it to anyone facing the trauma you are going through.   M

My tumour shrank by 60% after chemo/radioation therapy, however it is still too close to my anus for the surgeon to get a good margin.   The surgery is set for July 3 and I am having my rectum and anus removed via key hole surgery and a permanent colostomy fitted.  He explained that you only get one chance at surgery and he wants to give me the best option for not having a local recurrence.   He also explained that in the low rectal area there is a high risk of it invading the sacrum. bladder, vagina and the nerves that allow you to move your legs; all pretty scary stuff.   

What have you found to be the biggest challenges dealing with your stoma?   My surgeon told me that I would be able to sky dive, scuba dive (AS IF ... ha ha!) with a colostomy!   This is all new and very frightening but apparently this time next year I will look back and wonder what I was so upset about - hmmmm not sure if I believe that.     

My thoughts and prayers are with you and I hope you get through this dark tunnel and have a good outcome.  Cancer sucks!  

Love and peace 

Rosella.   

Hi..Roselle

As far as coping I am going to counseling too. There are days I still cry myself to sleep and then there are some not so bad. Talking to the counselor does help cause she said everybody in this situation thinks about the same thing like why or what we could have done differently or what we done so bad to be punished...eventually we may get to the thought of this is saving our life but it takes time and I haven't got there yet!

When I first got my stoma was the worst emotionally. I couldn't stand to look at myself in a mirror and it was rough getting around people being afraid they would notice but now that it's more mature I can go do shopping and eating out. At first the stoma made a lot of gas so the noise and bag swelling was hard to cover. Now working on my diet by reintroducing more foods especially fruits and vegetables. I have been lucky to not have a blockage so far but a lot of water is good!.. I don't think diving would be good either...lol

Haven't had any leaking problems either the bags I use are the Hollister one piece drainable..but going to try the closed since your bowel functions go back to almost normal which I would change once a day. 

My tumour also shrank but it started at my sphincter and grew upward....like you I was told I had hemorrhoids and nothing worked til I had a colonoscopy and they found it. My cancer markers after treatments went from 9 to 3 and go for my scans on the 29th to see and set up for surgery.

My thoughts and prayers are with you also..May God bless all of us in this journey. 

Stay strong and don't give up!

Hi All,

Just an update on how things are going on. Finished my Radiotherapy and Chemotherapy 19 May. I received a call from Professor Myint on the 23 May which was the original tentative date for my first Papillon treatment. He was asking how I was going on which I told him I had a sore bum at the entrance and redness of the bum cleavage and I seemed to be going to the toilet quite a bit.

He advised that now I had finished the treatment at Saint James I could now start using Anasol and Sudocreme to ease the soreness and he suggested that A at least till the toilet visits settle down that I in effect go on a low fibre diet. Which in essence involves eating fish, chicken keeping off the fruit and green veg. I can have carrot and potatoes without the skin, White bread he said it’s a bit bland is the diet but should help ease things. 

Still to continue with the baby wipes but to invest in a portable bidet bottle.

The toilet visits are starting to ease back now I generally was going 3 times a day within an hour of eating. But this is easing a bit now I still sometimes go 3 times but this past week or so I have noticed that there are more days that I am going twice and sometimes just once around the time I get up.

The redness around the bum cleavage is fading every day and the entrance is gradually getting less sore.

I discussed with Professor Myint about any shrinkage of the tumour and how that will be detected and we agreed that I would get an MRI scan arranged locally which would then be uploaded on to the system so he would have access in advance of my first dose of Papillon treatment.

I go for the MRI this morning and then see the Saint James Oncologist on Tuesday but that is just to look at how my skin is doing.

I’ll keep you posted on progress my first Papillon treatment is on the 28 June.

Kind Regards 

KevH 

All the best with your MRI hope it shows significant shrinkage and your sore area clears up . Not be long now till it’s all over .

take care,

Court 

Thanks Court I’ll keep you posted as things happen 

Take Care

KevH

Great , you will be leaving hospitals in the past very soon .

take care,

Court 

Rosella, bit hugs to you and your poodles  xxxxxxxx

Good to hear how you’ve been getting on Kev, and best of luck on the 28th!

My update - Following a successful referral that was discussed at Clatterbridge we have been told that mum is not currently suitable for Papillon I think because it’s 4cm and only 7cm in, being very low, however, for the first time we have been advised that mum should should try EBRT in the first instance. This is the first positive response so I’m pleased we tried for a 2nd opinion. Just waiting for a referral for this now but our local hospital originally said they would not do Radiotherapy without surgery, so we are hoping they will change their mind once they have received contact from Clatterbridge! It’s been over 4 months now since diagnosis and we just need a treatment plan to focus on.  I see that you have had to wait for things to happen so we just have to try and be patient. I’m still hoping if they could get a response with EBRT that mum could become suitable for contact RT.

I’m interested in following your story so it was good to read your update. Good luck and I do hope your unpleasant side effects wear off soon!

Best wishes

 The right response from a GP. If in doubt get it promptly checked without delay.... time is of the essence in this game. 

Take no nonsense from yr GP if you've got any Red flag signs, use yr NHS rights for a thorough check up,  scans,  colonoscopy......

 Hi Lisa.  Well your  are well on the road to getting this thing removed and incinerated.  

Don't jump to any negatives too soon.. or Google as its so out of date. i did not tell my family until i had the scans and clinical staging to know what i was dealing with and then put a positive but realistic spin on the news for family. As until you get the pathology report it is partly but prudently accurate guess work.

The pathology staging after surgery gives you the real deal on what yr dealing with. Under the microscope all that's removed will be analysed.

You did the right thing taking action. Get a healthy margin of tissue and number of lymph nodes taken for a thorough analysis and right follow on treatment can be determined. Radiotherapy and surgery usual maybe some chemo depending pathology report. 

Cancer research and beating bowl cancer also good sources of information

The youngest person with bowl cancer in the UK were in there early 20s, mid 30s is not uncommon. 

Use this site forum for all yr questions keep a record on yr questions for yr consultant etc as it's easy to forget with all that's going on around you. 

Search the forum for past responses  on rectal tumours,  its full of useful info. Yr young so all is in yr favour,  keep fit, eat healthily as you prepare for the journey ahead.  

Keep us posted and best wishes.