To recap I had stage 1 colon cancer 5 years ago resulting in a resection and there was no lymph node involvment, then 14 months ago I had another stage 2 cancer at the join of my previous resection and it was off to hospital for another operation. Again there was no spread or lymph node involvement. I was offered Chemo the second time but only because it was the second time I've had this cancer, otherwise they would not normally have offered it because it was stage 2. I didn't know what to do and after discussion with my own doctor I decided not to have the chemo as he felt it would cause more problems than it would help.

Recently I have been finding spottings of bright red blood on the tissue. This doesn't happen all the time, just occasionally, but yesterday there was quite a bit of blood on the tissue and some in the toilet bowl. I'm due a colonoscopy on 30th October - which will be the first since my last op - and I'm convinced I've got cancer again but I'm praying it's not.

I know nobody can tell me whether it will be cancer again, but what I did wonder is if anyone has experienced bleeding like this and found it was not cancer?. I do sometimes know when when there is going to be blood on the tissue as I feel a scratching sensation during a bowel movement, but other times I feel nothing. I often have to really strain to go to the toilet even though I have a desperate need to go. It's almost like the stitching is too tight but once I have strained to get started I can go fairly normally. Sorry to be so graphic but I'm just so cheesed off with it all.I can't believe this is all happening again as each time I have caught it early but it keeps coming back.

Lalee

Hi Lalee, I can understand your anxiety but it does not have to be cancer. With your history, is there any way you could bring forward the date for the colonoscopy? I know under the NHS, this is probably not easy but is it worth asking? Have you spoken to your doctor about it? I hope you will post back and let us know how things are going, or if you just want to vent.

Love and prayers,

Hi Alison
Thanks for your reply
I have discussed this with my GP, and asked him to hurry along my appointment, which is how come I've got the colonoscopy on the 30th October. I'm also having a liver scan on the 16th. I've never had that done before so things seem to be moving along at last.
I know the NHS can be slow but I'm supposed to get regular check ups only it never happens unless I push for it.
I always read these boards because I care very much about everyone. I may not post much because as I've said once before I don't always feel I can contribute much not having been down the chemotherapy road (yet). I will let you know how this all goes after my tests are completed.

I hope you are doing well with your treatment.

Lalee

Lalee:
For you to go from a Stage 1 to repeat recurrences AT THE ANASTAMOTIC SITE (site of connection), would indicate that the surgeon is NOT getting good margins or a sufficient amount of colon beyond the tumor.

There is NO good evidence that supports chemo for a Stage 1 survivor, and is usually a choice for a stage 2. Your next move should be to get a PET scan, though I don't know whether you can get this test under your health plan in England.

I wish you the best of luck Lalee, and truly CAN'T BELIEVE that you are going through this. :confused:

If you DIDN'T continuously have recurrences at the anastamotic site, and had recurrence somewhere else in the colon, then I would say it is definitely genetic and you should have more frequent colonoscopies to avoid this issue.

However, this does NOT appear to be the case. Has the same surgeon done both operations?? If you have the pathology report, has the same pathologist signed off both times on analysis of the specimen?? I would be raising HECK!! And, I agree with Alison, if you can TRY to push up the colonoscopy date.

My thoughts are with you. :)

Warm Regards,
CancerDad :angel:

Bleeding can always be scary, especially when you have had colon cancer twice. This could be hemrroids, or since you are feeling a scratchy feeling during bowel movements, it could be an anal fissure. These will also cause the anal sphincter muscle to tighten up, which could cause you to feel like straining just to open up enough to "go". I had one for 40 years and did not even know it. There was scratchiness and tightening (really bad tightening) but never any blood or seering pain like some people have. I hope it is something simple like that. You might even try to get an appointment with a rectal specialist before the 30th if it would make you feel better to not have to wait so long. I will be thinking of you.

BAMc

CD The first operation was by a general surgeon but the second one was done by a colorectal surgeon. The day after the op his registrar told me what a fantastic job he had done, and that it was a joy to watch.

I'm not sure what a PET scan is but I did have an MRI scan before my last operation and there was no spread.

We don't get copies of pathology reports as a matter of course but I think we can now ask for our records for a small fee. I think I will do this. I'm definitely going to make a fuss until I get some answers. I'll let you know if I suceed.

Thanks

Lalee

bmccrea - There's no chance of bringing forward my colonoscopy. There is usually a 9 month wait, so the fact that I got my appointment at the end of October is actually very good.

I always thought there was pain with anal fissures. I would be so happy if it was a fissure. I will keep my fingers crossed that it is something like that. It would be so much better than the alternative.

Lalee

Lalee:
A PET scan is a machine that can detect cells that use a lot of glucose... cancer cells divide so rapidly that they require a lot of energy (glucose). So, you are injected with a radioactive labeled glucose and then run through a machine from head to toe to determine if you have cancer spread.

Also, bloodwork SHOULD show your CEA (carcinoembryonic antigen) level is elevated in most patients with colorectal cancer. Your level should be assessed.

Food for thought. Again, I don't know how to go about getting these tests in England... perhaps Ktee will chime in and help you out as she has dealt with this MANY times and would be a GREAT help, as always!:)

Fondly,
CancerDad:angel:

hi lalee

So sorry you are still having to go through all this. It seems like such unnecessary hassle for you down in the south west. Just goes to show how our health care trusts vary so much in different parts of the country and yet we are all supposed to be dealt with by the same standards !!!

I could not find out anything about location of PET scanners within the nhs but if you contacted your chemo clinic and asked one of the nurses I bet they would know.

Regarding access to records...... yes there may be fees involved but you should have full access to your records and first port of call would be your GP. You should not even need to tell them why you want to see them. I have posted a link to the British Medical Association site where it gives details on accessing records.
http://www.bma.org.uk/ap.nsf/Content/accesshealthrecords

Regarding co-ordination of follow ups, etc,. Please contact your local Macmillan nurse. He/she will have info relating to the correct protocols. In husbands and mothers cases, ours also co-ordinated link between GP and hospital teams. They are really usefull. Also, Macmillan nurses number can be obtained from either your doctors surgery or by contacting your chemo clinic and asking the receptionist for the number. I still keep in contact with our nurse so she knows how husbands test results go.

I also posted a link for you to look at regarding your Penninsula Cancer Network. It takes some wading through but does give access to name of specialist surgeons and specialist nurses at each hospital so it might be worth checking them out.
http://www.pcn.nhs.uk/palliative/palliative.htm

I hope this is not too much information overloads lalee and that it helps in some way.

Good luck with your colonscopy...... have you got a follow up with the colo-rectal consultant?

regards to all
ktee

Lalee,

I don't have much info to offer, just want to say hi and I'm SO sorry you have to deal with all of this. I think anyone w/a history of CC freaks at the sight of any blood on the tissue...and having it twice...I just can't imagine. Please keep us posted as to your scan results and your colonoscopy.

Hugs,
Cats

Thanks for the messages - I feel calmer just reading them. It's so comforting to know there are people out there who are rooting for you.

ktee - I never thought of contacting the Macmillan nurses. That's a very good idea and one I will follow up. Thanks for the links too. I haven't had a follow up appointment with my colo-rectal surgeon yet but have had a letter saying they will send me one after my colonscopy. I'm going to write to the consultant to ask that I have copies of all letters that are written to my GP. That way I will know when the results are in and wont have to wait any longer than necessary.

Thanks again everyone

Lalee

Just thought I would let you know that I had my liver scan today and although I have to wait 2 weeks for the official results I was told that he could see nothing that concerns him and everything looks fine to him.

I will update again after I have had my colonoscopy on the 30th Oct, although it will probably be 2 weeks after that before I get the results but right now I'm feeling a bit happier.

Regards to all

Lalee

That is good news, lalee! I hope the time until you get the results of the colonoscopy pass quickly and that the results are good!

Love and prayers,

Lalee,

Just wanted to send you thoughts and prayers for your results of the scan and your upcoming colonoscopy.

Good Luck!
Trish

Had my colonoscopy at 2pm today. I was awake (but totally relaxed)throughout.
They took 3 biopsies as there were 3 red bumps at the astimoses (sp) site of my last resection. One of the consultants came in during the scope and had a look. He said 'that looks alright, I think it's scar tissue'. I'm a bit worried though as after my first resection in 2001 I had all sorts of tests (scopes, barium enema etc) as they thought there was a stitch that they could see at the astimoses but the tests came back as inconclusive. Eventually it turned out to be cancer again resulting in my second resection in August 2005. I'm scared in case history is going to repeat itself but keeping my fingers crossed. I have to wait 2-4 weeks for the results.

I asked if there were polyps and he said no it's just 3 small red bumps that look a bit inflamed but I've not to worry.

I'm going to try and put it out of my mind until the results come through.

Hope everyone else is well

Lalee

Hi lalee, I am sorry you have to wait so long for the results. At least the biopsy will indicate if there is a problem...but I hope it is just scar tissue. Try to keep your mind occupied while you wait (yeah right!)

Love and prayers,

Lalee,

Good luck, I hope and pray it all turns out good for you. This is such a hard time, I HATE waiting.

Lee

Keeping fingers crossed for good results. You have been through enough!

Let us know when you get some answers.

Take care,
Cats

Seven weeks after my liver scan and five week after my colonoscopy I have finally got my results which show there is NO evidence of a recurrence of the cancer.

I am so pleased that at last I have some good news. This is the first time in 5 years I have ever been given such good news having had this cancer twice. I will be having regular checks to make sure I stay clear but for now I'm feeling good.

I just wish that everyone could have some peace of mind.

God bless you all
Love
Lalee

Oh Lalee, what wonderful news! I am so glad. You have had to wait so long to get this news! But at least it is the best news you could get. Do make sure you have regular checks.

Love and prayers,

Yeah!!! Go celebrate!! Thank you for posting this wonderful news!

Take care,
Cats

Congraduations on your wonderful news.

Lee