Hello

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Thanks for accepting me onto this forum. I think I have gained more knowledge from Macmillan booklets than the the professionals treating me although I do use hearing aids so miss a lot, so thank you Macmillan!

I was diagnosed with a Rectal tumor early Jan '23 following 3 biopsies to prove cancerous.

I first presented to my GP in mid Oct '22 due to occasional show of blood when wiping for previous 4 weeks or so. The usual Nhs bowel cancer screening showed me clear last Feb '22. My colonoscopy was in early Nov. They found a 2.5 cm length lesion 4.5 cm up from the ano-rectal junction. I started Chemo and Radio therapies last week for 5 weeks, then an 8 week wait until a scan and possible surgery.

It was hard, slightly traumatic to get the news, and attend the scans and oncology/surgery meetings all in quick succession. The Colorectal Nurses team have been great in co coordinating appointments. I am so pleased to be in the planned treatment loop now after all the hurry up and wait appointments /scans etc. I have been allocated 5 weeks of Radio every weekday (10-15 mins) and Capecitibine tablets at home.

The 2 difficult things for me is that I have had no symptoms since the 3rd biopsy (i'm convinced they took a big piece of it away) so I'm feeling do I really need this treatment? Also I don't really want to tell anyone about my condition.

I know of course that I do need the treatment and am getting on with it no fuss. I have told my close work colleagues and manager as I am now on sick leave. I have told my wife and grown up children but only one of my 3 sisters and not my brother. I am close to them but fear the news getting back to my 90 year old Mum who worries for Britain if we are ill !! I guess I don't want this illness to own me unless I become really ill then will need to explain to friends why I can't do things as normal.

I am interested to hear any comments and also want to thank the NHS for their brilliant response to my problem in these troubled times. So lucky to have them!

  •  Hi,  , I understand your dilemma! Some while ago I started a thread 'to tell ...or not' which got some interesting replies. This may be of help. 

    community.macmillan.org.uk/.../to-tell-or-not

    This theoretically is the link, but I'm not the best! Else just type in the title in the search box.

    Take care

  • Hi Richard21 it is a bit overwhelming at first but as you now know the medics are pretty good at this stuff I've had the radiotherapy and chemotherapy and am booked in for an op on 14th March which involves a Stoma being made and then removal of my rectum\anus as my tumour is very low down but j have trust in my surgeon and oncologists so hopefully just a bit of adjuvant chemo and that should be The end of it ( might not be sitting down for a while ) as far as I know a biopsy only removes a very small section of tumour personally I haven't had any real symptoms just some anaemia and little bleeding I think your Best option is to go with the advice of The medics as they have been doing it for a  long time. I understand about how difficult it is about telling family and friends but sometimes they get more upset about not being told than about the cancer . Good luck I hope you get on well with your treatment. 

  • Hello! I’m afraid I don’t have any advice to give as I only started my journey a few days ago but wanted to give you a warm welcome!

  • Thank you, really interesting. I hadn't considered how nearest and dearest would feel to be told after or during treatment. I am probably over the initial shock and processing so will now think about how to tell my brother and sisters ensuring my mother is not told. I can't see any benefit in telling a frail 90 yr old this news. Unfortunately we have a mass family gathering for her birthday towards the end of my therapies which I can't risk going to in case of infection.

  • @Richard21 , When my husband was diagnosed he decided he only wanted to tell very close family, my parents and our children. We had to also tell some very close friends as we were going away with them. We did not tell his 90 year old mother straight away as we did not have enough facts for her to fully understand and also we had lost his sister to this awful disease a couple of years earlier. Once we had a treatment plan we went over to tell her. Due to family occasions and regular visits to her it would have been difficult to hide. Yes she was devastated but we tried to be positive and still are after 9 months of treatment and surgery. She worries but that’s natural and she fully understood why we waited to tell her but would have been very upset had we not done so. As time has gone by and things are looking more positive my husband has felt more comfortable with wider friends and colleagues knowing what is going on. He has had the most amazing positive attitude almost all of the time I am sure this has helped him. I have been by his side every step of the way.

    Only you know how your mother will react and how best to handle the situation. It is not easy. I wish you all the best with your treatment.

    Karen 

  • Thanks for your kind words and sharing your husband's experience. It will help with my decisions. X

  • Wish you all the best on your journey. and let us know how it's going. X

  • Thankyou and good luck and speedy recovery.. 

  • Hi Richard21, I have just finished my post surgery chemo and have been released for surveillance for the next 5 years following surgery for a tumour removal in my sigmoid last July. The NHS were brilliant and from diagnosis to surgery in less than 3 weeks following a positive FIT test from the Bowel Screening Programme. I did not tell many people, close family and colleagues. I feel that people look at you differently following  this type of diagnosis and by limiting who knew, made daily life a bit more normal. It is an individual choice but I wanted to limit it to who really needed to know. I did not tell my mum until after surgery and the final staging which was T3N1MO. This decision was made after I consulted my siblings and husband as although my mum is a robust 80 year old, she had already lost a child, and us a sibling to bowel cancer in 1973 at the incredibly young age of 9 so did not want to unduly worry her until I knew what I was facing. Good luck with your treatments and keep us updated on your progress xx

  • Thanks Mel M. Good luck with everything. I will get round to telling my siblings and discuss with them the wisdom of telling Mum as you did. X