Hi,just been diagnosed with rectal cancer .

  • 16 replies
  • 161 subscribers
  • 2714 views

Hi,just been diagnosed with rectal cancer but no staging yet.They say I now need a PET scan as have some enlarged lymph nodes around area.Has anyone else had a PET scan at this stage and the reason for this.My anxiety levels are through the roof!

  • Hi 

    Welcome to the forum !

    https://www.macmillan.org.uk/cancer-information-and-support/bowel-cancer/rectal-cancer?&infinity=ict2~net~gaw~ar~376487279210~kw~%2brectal%20%2bcancer~mt~b~cmp~g_ps_cid_uk_gen_cancer+type_rectal_bm~ag~core&gclid=eaiaiqobchmihjn4ieh88givqu7tch38awwdeaayasaaegixgpd_bwe&gclsrc=aw.ds

    I have enclosed a link that lists the various options the team use to gather information together !

    My mum always had Pet scans just before surgery , they are inclined to use all information at their disposal!

    When the surgeon removes the primary tumour they strip out a lot of lymph nodes and sometimes in those locations some cancer has made it into the lymphatic system so they would use this information along with other factors to decide on things like follow up chemotherapy! That is relatively common around here !

    However some people have a distant spread where the lymph nodes are away from the primary tumour ! The MDT meeting would want to know about that as the treatment approach might be slightly different.

    Did they say where they lymph nodes were that you are concerned about ?

    take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thanks for replying.I will read the article you sent.All the nurse has told me yet is that lymph nodes look enlarged next to tumour area!I am waiting on her phoning back so I can ask for more detail.

  • Hopefully they will be able to put your mind at rest . A lot of people do have some evidence of cancer in the lymph nodes near the tumour ! 

    https://www.bowelcanceruk.org.uk/about-bowel-cancer/diagnosis/staging-and-grading/

    This is the staging information and lymph node involvement near the primary is covered !

    Hope it helps !

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi, , at my initial grading it was thought nodes were affected, but once the tumour had been removed and 40 nodes, they were all clear. Just some vascular invasion, hence a recommendation for chemo after. So don't panic at this stage!! Easier said than done. Take care

  • Thanks for reply.All very helpful.I have now been told I will probably get radiotherapy before surgery and may need a stoma before radiotherapy to help my bowel processes during radiotherapy.Has anyone had this before and any advice?

    thank you

  • Hi . Are you having chemo tablets with it too? I had chemoradiotherapy for 5 weeks and it shrank my tumour from 4cm to 1cm.   The stoma is sometimes fitted before surgery to make sure the tumour doesn’t block the bowel if it swells slightly durung the treatment and also to help cope with any diarrhoea that you may experience. I found the radiotherapy to be very doable - the worst part was the long daily round trip to the hospital and the waiting around with a full bladder! The actual treatment involves lying on a (hard) table for 5 minutes while the machine zaps the tumour. The radiographers keep a close eye on you and will give you a cream to rub into the area to help keep the skin moisturised - it is important to use only this cream. I used to get early morning appointments as there was less of a backlog then.

    www.macmillan.org.uk/.../chemotherapy-for-bowel-cancer

    I had my stoma fitted during surgery then reversed 15 months later. There are lots of people on here with stomas who will be happy to share top tips. The stoma nurses will make sure you’re happy cleaning the stoma and changing your bag and you’ll quickly settle into a routine with it. 

    Please feel free to post if there’s anything specific that you’re worried about - there is nothing too daft or embarrassing on here!

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi everyone

    Update and looking for advice.

    will be getting chemoradiation before surgery for rectal cancer.Can anyone tell me how that goes and for how long,what are side effects, are you able to drive to and from appointments, can you carry on with everyday tasks in the main although I do realise will be very tired.

    thanks

  • Hi 

    I am going to tag in  to see if she is free to answer . She has experience in this aspect !

    Hopefully others will pop on too!

    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hi . I found the chemoradiotherapy so be very doable. I think I’ve covered some of your questions in my previous post. Yes you are able to drive to and from appointments - I asked for early morning appointments when the roads were a bit quieter and also there was less backlog at the hospital. To be honest I just carried on with life as normal - working, shopping, cleaning etc. Obviously I was lucky not to have any major side effects and you may find that fatigue starts to kick in as the treatment progresses but it’s a case of listening to your body and, if you need a little nap, then have one. Have you got a date for your stoma yet? 
    Take care

    Karen x

    ps my friend was initially told she had lymph nodes affected but after chemoradiotherapy and surgery there were none present 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm