Very uncertain of the future

Hi, my mind is all over the place at the moment. and at the point of despair! Having been diagnosed with Rectal Cancer just over 5 weeks ago and now on waiting list for surgery in the next few weeks hopefully, but no date has been given. Unsure what the surgery will involve. 

  The cancer I have is as stated in "the middle third of rectum and Palpable at 70mm point" what ever that means? I have no idea what surgery I will have for this and not had the discussion with the consultant until now, but hopefully next week.

In the last 5 weeks since diagnosis I have read so much on the subject and as each day passes, become more concerned as most articles talk about  LAR or TME ? Most of which talk about a Colostomy Bag after surgery? 

Whilst I no longer play sport, I am still very active both with DIY, Photography and Long walks (6-8miles) most days. Now totally unsure if I will go ahead with any surgery, if this will be my future life, living with Colostomy Bag? Interested in what life style I will have in the future?

  • Hi there i dont know much about that .but theres a number on here to spk to cancer research nurse she will be best suited to explain and hopfuly calm your nerves .theres also and ask the nurse were you can post a question but you need to spk to someone i think. i wish i could help you more .looking on google is great if you can filter the rubbish and misinformation .but its not for everyone .best wishs come back if you need to chat .the lines are not open till tom.regards paul

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    Hi Luke,

    I am so sorry to hear about your diagnosis. It sounds as if you need an in-depth discussion with your surgeon before you make any decisions.

    Paulus has rightly pointed you in the direction of the nurses on this site, who might be able to help you with what is usually done in cases like yours. However, only your surgeon will know exactly what he is planning. You might also ask him what the prognosis would be like if you refused surgery. I expect that the outcome could be even worse than having to wear a colostomy bag.

    A very close friend of mine had a colostomy bag. Her procedure was irreversible, but she had a good quality of life despite this. Sadly, she is no longer with us now, but we managed to meet up for lunch just days before she passed.

    Please let us know what you decide to do and remember that we are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Luke,

    First off, I fully understand what's going on in your head.   You're by no means the first, certainly won't be the last and will be one of many going through the same thing at this time ... you're not alone, my friend.

    I would suggest you need to get a clear explanation from your surgeon/consultant on (1) what he/she recommends should be done, (2) what potential alternatives there may be, and (3) if there are any potential alternatives then what would eliminate them as non-practical on medical grounds - not just on speculation.  I insisted on that in my case and got a much clearer answer.

    Secondly, the position and size of the tumour will determine (1) what the advised surgery is, and (2) whether this is a multi-step process over time.   In my particular case, the operation was a single-step one in that I ended up with a permanent colostomy bag with the lower part of my colon and rectum removed.  This was because the location of the tumour was right at the bottom (so to speak) and an interim examination had confirmed that the other potential alternatives were not surgically feasible.

    However, and I stress I'm no medical expert here, with yours being in the middle third of the rectum (haven't a clue what the 'palpable at 70mm point' means either) then this would suggest that you could be looking at a chop-out-and-reattach operation.  To give your rectum time to heal you may end up with a bag (either ileostomy or colostomy) for an interim period (typically 6-9 months) and then that is reversed and your colon fires up again.   This is the information you need to get from the surgeon as it'll answer a lot of your questions.

    Post-surgery, when you've recovered your strength from the operation (could take a few/several weeks), can you do DIY, photography and go on long walks (with or without a bag)?  Absolutely yes, you can.   I'm doing all the same things today that I was doing before the operation a year ago.  :)

    Very best of luck.

  • Hi Luke,

    So sorry to read about your situation - waiting for a diagnosis to be firmed up and a treatment plan to be agreed is about the hardest part.

    I’ll not repeat the good advice already posted but I would add that research shows that patients only retain about 40% of information receivrd verbally in a stressful consultation. So write down your questions AND the answers you receive and take someone in with you who can act as a second pair of ears and prompt you if you miss out a question. The consultant will not find this unusual.

    I’ve never had a colostomy bag but a friend has one and still sails dinghies competitively with it tucked inside his wetsuit. I guess like many things what you can do depends on your outlook and approach. 

    Good luck!

    Dave

  • Hi thank you for the information regarding my  condition and uncertain future. 

    Like youself my Cancer is extremely low in my bowel. The description states on the letter the letter I was given that the growth is in the middle third of Rectum.  Also have been informed on the phone from the last MRi that it is 70mm in?

    The clinical nusrse advised me that it will be "Problematic for Resection due to its location"

    So doesn`t sound good from the point of view for rejoin?

    No doubt that will come out in the discussion prior to the operation. Time will tell.

    Once again thankyou for points you raised and questions to ask.

    LukeB

  • Hi Dave

    Thanks for you response. The cancer has already been diagnosed as Malignant and requires surgery urgently.

    The meeting with the surgeon and team is being arranged and they have requested my wife also be present for that.

    So second pair of ears will be there.

    Fingers crossed will be a good outcome.

    Once agin thankyou.

    LukeB

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    Hi Luke,

    I just want to stress what Dave said about writing down all your questions beforehand. I have had 2 bouts of breast cancer in the past 8 years and I always attend each consultation armed with my hubby and 2 sets of questions. While I ask the questions, my hubby writes down the answers.

    Since we started doing this things have become much clearer and I don't forget what has been said at my appointment. Your questions will change from one visit to the next, so it is a good idea to change them  from one visit to the next.

    Kind regards,

    Jolamine

  • Hi Tom, apologise for late response. Hopefully understand as I just cannot concentrate at the moment. Alraedy found a lot of information on here as well as support.Meeting with the team later this week. Oncology, dietician and clinician`s 

    Thanks for response.

     

  • Hello Badger. Thanks for talking the time and giving me guidance with you response. Already prepared a list of questions based on yours and other folks suggestions. Met the surgeon who is carrying out the operation 3 weeks ago but didn`t know that at the time as I was under anaesthetic had was unware he also examined me as he was called into theatre at the time. Meeting him tomorrow plus a team of support and will know an awful lot more then. Kind Regards LukeB
  • Hi Davek, thanks for that information as you said" Lots of good advice on here". Already had diagnosis confirm that it is a Malignant Carcinoma Cancer and has to be treated with surgery urgently. Due to size and llocation. Fortunately I am one of the lucky ones and can have surgery.

    The meeting with the surgeon and team is being arranged and they have requested my wife also be present for that.

    So second pair of ears will be there.

    Have a list of questions a mile long some I`m sure will be answered with the explanation of the surgery involved.

    Will post the outcome of the meeting.