Updates - 2.5 years since diagnosis - about to jump back on the train again

Hello everyone,

Admittedly I haven't posted on here in a while (which is a good thing as things have been pretty good) - quick update:

So originally diagnosed with a T4 rectal tumor in Oct 2018 - Jan 2019 - Mar 2019 4 cycles of xelox - did an amazing job at reducing everything - moved on to 25 sessions radio + cape tabs - further reduction of everything - August 2019 - LAR clear margins final staging: T3N1M0. Reversed Oct 2019, Oct 2019 - Jan 2020 mop up xelox and given the all clear whilst keeping an eye on 2 lymph nodes that were a bit swollen.

Fast forward to June 2020 - lymph nodes grown a little - PET had uptake on them so did 5 sessions of targeted radio Aug 2020. 3 month follow up showed they were swollen but they told me this was normal because of the radio. Next follow up (Feb 2021) showed they were still swollen and maybe a couple of newer lymph nodes had grown... PET scan confirmed uptake in all nodes mentioned...

So... this is where I am now.

At first I went to see my surgeon who said they would go in and remove the nodes and probably do another resection "just to be on the safe side as 1 node was very close". I accepted this and resigned myself to waiting for the call for surgery.... then a few days went by and they called me to say they had decided that they would do a "little bit of chemo" before the op just incase things were on the move.

Was ok with all of this.

Today I went to meet the onc who was extremely doom and gloom (has made me very angry indeed) but confirmed I will do 3 months of FOLFIRI + panitumumab and then they will reassess and hopefully move on to the  operation...

Phew, what a situation! I am feeling very upbeat and positive in general as in the grand scheme of things, this all seems very doable but my onc has upset me with her attitude esp as I have understood this is a curative plan.....

Just needed to sound off.

Saying hi to anyone who remembers me and hello to all the newbies!

Rocky hugs

xxx

  • Well hello there  . We remember you for sure , determined and funny in equal measures .

    Gosh we had a few of those migraine inducing consultations. But from what I remember you previously had a good response to treatment so I will be willing you forward for good shrinkage . You have a broad net to cast for a second opinion over a few countries if memory serves me well and I just know you would consult widely! 
    I also would hold firmly to the fact your surgeon considers it surgically operable currently so remember their opinion and keep it forefront of your thinking !! 
    Take the time you need to recover from this . But I know strongsami will surface and I will be looking out to see your updates . 
    I am delighted you were off out doing your own thing , that’s what we like to hear and I will also look forward to seeing you achieve that again .

    You have your treatment plan now and it’s a pathway away from this point .

    Take special care ,

    Court 

  • Hi Strongsami,

      You definitely seem like a very strong person and i'm sorry to hear you are back on the forum, i'm just about recovering from a sigmoid resection and 4 months chemo tablets, just about to go for my 6 month scan following the surgery and am feeling a little nervous as i've had a bit of pain in my right side about bottom of ribs that goes down my side into the groin, went to see GP and he's sending me for a ultrasound of the renal tract, hopefully its not spread into the prostate but i guess will have to wait and see.

    Not sure i would be so amiable  if they gave me that kind of waffle but i know they can all do it sometimes.

    I work in the construction industry and have seen some dreadful plumbers, then my surgeon referred to himself as a plumber repairing the pipes, i nearly died after that one.

    All the best for the future

    TG

  • Dear it's so amazing to see your name again and hear from you with your wise words!

    I hope things are well with you and your family too.

    Thank you so much for replying and for your kindness. You are absolutely right of course, to focus on what the surgeon said as this is a plan to cure. I need to forget the negativity of the oncologist (not easy) but I will get there, smash the chemo and hopefully show her I am a force of nature and not a statistic! 

    I will of course keep you all updated.

    Massive hugs,
    S xxx

  • Hello @Technical guru thanks for replying to me, I am a strong person (or so I discovered after cancer haha!). I understand the nerves before a scan (scanxiety is real!) and it makes it worse when you feel physical symptoms too. Obviously I am not a doctor but from my experience those twinges are usually just that, the right thing to do of course is to keep everything under observation and you are doing that.

    I did have a chuckle about the plumber comment!! A friend of mine made a beautiful analogy - which I will share with my surgeon when the time is right - that the surgeons are artists and we are their painting. 

    Best of luck with your scans, hugs

    Sxxx

  • Hi . I’ve been keeping a sneaky eye on you on the other board so it’s ‘nice’ (?!) to hear from you on here too. I think oncologists seem to have a variety of bedside manners and some are better than others. Mine was lovely and used to have a bit of banter with my surgeon. When she looked at my scan she said it was ok but he’d ‘made a mess of my insides. I told him this and he said she didn’t know what she was talking about and went green at the sight of anyone’s insides and should stick to dolling out her expensive chemo! It was all said with love! 

    You know you had a good response the first time around and there’s no reason why you shouldn’t again. They are obviously underestimating your rocky resolve! Keep those positive pants (shorts?) on and stick 2 fingers up at your oncologist - she won’t see with the gloves on!

    Take care and keep us posted

    Karen x

    ps got Eye of the Tiger going round in my head now!

  • Hello it's great to see you on here too!

    That did make me laugh about the comments between your onc and the surgeon!!! 

    I am feeling nervous obviously, I just want this to work and do its magic on the naughtiness! Haha yes quite, I absolutely feel like sticking 2 fingers up and saying "you don't know me". I think I did this first time round with her colleague as I walked out of the consultation I said, "I am strong you know". 

    Thanks so much for your message, will definitely keep you all posted!

    Eye of the tiger is a great song! I think I need to watch the film again to help me get psyched up!

    Rocky hugs

    Sxxx

  • Hi, I am waiting or my operation as I have a polyp growing around my bowel in my sigmoid colon, and think I will be having the same operation as yourself, and was just wondering if you could give me the heads up what to expect, hope all goes well with your scan