Pain and worries

Hi Debh1,

I think everyone here will completely understand where you’re coming from with your concerns, I certainly do! I’m a little over 4 years post treatment & still get these episodes from time to time. I get what I can only describe as a sensation where my tumour was, I do bleed now & again usually following a difficult bowel movement but these episodes do get less as time goes on.

It’s good that you’ve informed your nurses & that they’ve been helpful with supplying creams etc., you’ll hopefully have an internal examination at your upcoming check-up & I’m sure your scans along with this will be able to offer you some reassurance.

I think knowing what’s down to the after effects of treatment against something you should be concerned about is very difficult at times, this is probably the case with most people that have received a cancer diagnosis & sometimes you can reason your way out of a state of panic other times that’s just not the case. If it helps at all my surgeon told me I should be aware of any new lumps or bumps, I check my groin as well as around my tumour site usually while washing in the shower, also any heavy, continual bleeding.

What you’re describing sounds exactly what I’ve felt in the past when my skin has split either internally or on the anal verge. I’ve come to the conclusion that there’s possibly some damage to the nerve endings in that area too due to surgery & also the radiotherapy & I will possibly always have altered sensation there.

Another thing that’s good to remember that once you’re past that 2 years post treatment stage the chances of recurrence drops dramatically.

I hope that goes a little way to easing your worries but if in doubt I would probably give your oncologist/surgeon a call to see if it’s possible to have your appointments brought forward a little then they’ll be able to put your mind at rest. 

Nicola 

Hi Debh1 this is exactly what I am experiencing right now we went through treatment roughly at the same time. About 8 days ago I experienced terrible itching at the tumour site, I scratched but not too much. Then I’ve had the worst flare up in 2.5 years. Awful pain and itching along along the left hand side right where the tumour was located. Toilet times upsettingly painful. I’ve managed to put it out of my mind a bit as I’ve been away on holiday this last week but not completely. I’m receiving my 3 year lung/liver CT scan this Thursday and will have the usual digital rectal examination. I will also be sharing what has been happening recently with my Oncologist. When I go to the toilet it feels like there’s a deep cut where the tumour was. Will report back after the appointment. Slightly reassuring that we’re virtually at the same stage and are experiencing the same thing, although I obviously wish you weren’t! Bev x

Wow Bev, thank you so much for replying.  Exactly as you've described it, is what I am experiencing.  Last week or so it started - itching and pain on the left side.  Painful toilet visits again and absolutely feels like a deep cut - definitely best way I could describe it.

Its crazy that we have such similar experiences - but yes, definitely a little reassuring.  This too is my worst flare up yet.

Deb x

Nicola - thanks as always.  I feel like a broken record sometimes, but it helps me so much to come on here, hear your experiences and jump off my anxiety train and be rational again for a bit!  I'm hoping it will start to ease soon, but if not will definitely see if I can move my appointment.

Deb x 

Oh Deb,

Absolutely, we all do understand what you’re feeling!  I’m not as far along in recovery as you are (finished treatment just 6 months ago), but I do despise the feeling of cruising along, feeling pretty “normal,” and then having those odd residual side effects and symptoms suddenly pop up again!  The cruelest part, in my opinion, is that the side effects of treatment often mimic the symptoms of the disease.  The other thing I notice, at least about myself, is that I seem to feel the sensations more intensely the closer I get to a check-in with my medical team. (For me, that’s a week from tomorrow!!)  I haven’t figured out how to combat the anxiety, but as Nicola indicates, returning to facts and rational thoughts based on what we know about the disease does seem to help me, too.

I am sending good energy your way, that your upcoming scans are the very best news, and that as your body continues to heal, you feel better and better, both physically and emotionally.

Peace to you!

Red

Wow, it's good to know that that far into recovery the bad days still happen! I went for my 3-month-post treatment checkups yesterday, a bit worried that I'm not further along, but the doctors all assured me that I'm where I ought to be. 

The worry about what's okay and what's not is something that'll just be part of life going forward, I guess. 

Glad to have this forum to talk to others about it all. 

Hi Debh1 all clear with my scan and DRE despite ongoing issues- I've created a new post in the group Bev x