Would appreciate help and advice! (And hello too!)

FormerMember over 5 years ago

8 replies
117 subscribers
2416 views

Hi everyone

I'm new but have been looking at the forum for the past year or so and have found it really helpful. Just knowing other people are in the same boat helps.

I'm 35 and was diagnosed with Stage 3 bowel cancer last September. I had chemo first, then a right hemicolectomy and just finished second mop up chemo at the end of June. Had a clear CT scan in June and now I'm waiting for telephone appt with bowel clinic to discuss surveillance etc and how things work going forward now that I've been discharged from oncology.

Everyone says the time at the end of treatment can be the hardest and I'm definitely feeling that. Feel like I'm on my own and I'm worried about a couple of things:

- I've had a fissure for months now. It's never been formally diagnosed but on the telephone the oncologist and gp thought that's what it was. It feels like stools have to squeeze through a small space and I've had bleeding fairly regularly when going to the toilet. Taking movicol regularly and using cream the gp gave me seems to reduce chance of blood, although at times harder stools still cause problems. I'm going once a day but still seem to get constipated if that makes sense? I'm 99% sure it is a fissure but having had this for months now it's getting me down. I've only been using the cream seriously for the last 4 weeks or so post chemo.

I panic that it's anal cancer or rectal cancer - but I presume these would have shown up on a CT scan (thorax and pelvis) wouldn't they?

I also have had a blood test because some of my liver levels were mildly elevated during end of chemo. All OK but my Alkaline Phos is higher than usual (133 when it's been between 100 and 117 before) and my CRP is 16. I have lowish ferritin too of 20 odd. This could all be chemo after effects couldn't it? My oncologist hasn't seen these latest results but he wasn't worried about anything back in June.

I'm sorry to be rambling but I'm just on high alert and worried. Is this all relatively normal? The CT scan is the key isn't it and that was clear so should I try to be more relaxed?

My CEA was 0.7 Feb after op and was 2.2 back in June. Again the onc never talked to me about CEA. Fairly normal?

All the doctors and the onc have been great but I worry a lot and feel that I'm out of the system now!

My GP will phone me tomorrow about bloods and to catch up about fissure. It's a scheduled appt so hoping it won't be alarming.

Any advice/ help really appreciated! Esp if someone can tell me that my CT would have shown if rectal cancer etc!

Thanks and hope everyone is doing as well as they can. What a psychologically struggle this can all be!

Thanks

David

FormerMember over 5 years ago

Hi David

Welcome to the forum.

I had stage 3 colon cancer in 2011. I had surgery followed by six months of chemo. I also found the months following treatment hard. The chemo makes you very tired but the worst thing is feeling that you are now on your own. It is often described as being in a black hole. You have been looked after for some months - then it seems like nothing until your next colonoscopy or scan. I would suggest that you speak to your Cancer Specialist Nurse or Key Worker, they are there to support you throughout your treatment and until you are fully discharged.

Regarding the constipation - Movicol is very good, but it is not a harsh quick acting laxative - it is very gentle and helps to move the food through your body. With Movicol you need to take it regularly, it is often recommended that you take two or three sachets at first and then one every night until you get into a regular habit. Then reduce it down to half then a quarter - increasing up again if you become constipated again. You could also speak to your GP to ask if he can prescribe something else to help you.

We all worry that things have been missed on our CT scans, but talk to your specialist nurse or key worker about this and all your other worries, she/he should be able to reassure you or speak to your consultant on your behalf.

Take care,

VickiLynne.

FormerMember over 5 years ago in reply to FormerMember

Thanks, Vicki. I really appreciate you replying. You’ve articulated perfectly what the end of treatment feels like. Very odd and not at all like I thought it would be.

That’s really helpful. I have my telephone appointment with the Bowel Clinic on Thursday to discuss surveillance etc and post treatment direction, so I am hoping I will find out who my key worker/nurse specialist is then. Hopefully they can help.

I’ve been taking the movicol once a day and it has meant that I am going to the toilet regularly, sometimes twice on one day but mainly once every day or two days. However, the feeling of it being hard work remains at times and I think this is the fissure. The stool can be soft but still difficult to pass.

Hopefully reassurance is on the way as you say. I am still assuming that the CT scan I had would have flagged up anything suspect. This is almost certainly a fissure, but because of telephone appts and the focus on the chemo I worry it has slipped between the cracks over the past few months and could be something worse. But will speak to the clinic them and the GP and hopefully things will be clearer.

David

FormerMember over 5 years ago in reply to FormerMember

Hi David

Glad to help, and I hope your telephone appointment goes well.

Everyone should be introduced to or given details of their Specialist Nurse or Key Worker when they have the first appointment with their consultant, but hopefully you will have can get contact details on Thursday.

Take care,

VickiLynne

FormerMember over 5 years ago

Hi David,

Does worrying help? If it does, keep at it, if it doesn't, stop it right now, this instant. Get on with your life, live it to the fullest. Take the treatment, it's Gold standard in this country.

Take Care

Lornaliz over 5 years ago

Hi David,

I hope you're doing well. I'd ask to get the fissure properly diagnosed as it will put your mind at ease. My otherwise healthy 3 year old has suffered from chronic constipation due to a fissure, they can be so sore and seeing the blood can also be quite alarming.

I hope your feeling a bit better soon x

FormerMember over 5 years ago in reply to FormerMember

Thanks, Scrasebridge. I am trying to control the worrying and get on with things as best as possible. Post treatment seems almost harder than treatment at the moment but I’m getting there.

FormerMember over 5 years ago in reply to Lornaliz

Hi Lornaliz,

Thanks - that’s really kind. I am going to get the fissure properly diagnosed, My GP has been very supportive and she’s going to talk to me after my next blood test in early Sept. At the moment I’m struggling with trapped air pain/pressure from the site of the hemicolectomy. It’s 6 months since the op so I would have hoped things had settled down, but it appears not. I’m going to post to see if anyone else has had this. Otherwise keeping going! Back to school soon (I’m a teacher) - that’s going to be interesting!

Hope you’re doing well. .

FormerMember over 5 years ago in reply to FormerMember

Definitely harder and the side effects just keep building the more chemo you have. This is your new life. Just like losing a limb, A new normal has arrived for you, treat yourself gently. CEA is just a marker when it gets above 100 the Oncologists start moving much faster. If the CEA rises during treatment they know instantly it's not working, the opposite is equally true.