Skip to main content

Does anyone know if there are any connections between these please? I had a smear 12days  ago and the nurse warned me that I would probably get recalled because I have a j pouch although she couldn't explain why. Within a week I was told I needed an urgent colposcopy and just after I received that appointment I received an appointment to attend for chemotherapy a week after the colposcopy

 

my GP hasn't seen the smear result as it was supposed to have been emailed and was never received, whilst the locum GP who spoke to the lab never chased it up and wrote nothing about the result on my notes. To make matters worse it had been 8- yes 8- years since I had my last smear. I have attended for my mammograms and all my follow up appointments for my colon cancer but not my smears. Sigh.

 

I am slowly going insane , having said that my colposcopy is in 18 hrs so I don't have long to wait

 

another  major fear is my pouch being wrecked if I need chemo and radiotherapy. I realise this may be the very least of my worries but I am crossing every bridge at the moment and feel like planning my funeral!

 

 

Original Post

Replies sorted oldest to newest

Sorry to hear about this. I think it is not because of your j-pouch itself, but the reason you have it. Specifically, the history of colon cancer. That puts you at higher risk of uterine cancer. Was your cancer UC related or did you have the familial type?

 

Hope things work out well for you and they are on top of this in time.

 

Jan

Thanks for your input Jan. I'm so annoyed with myself for missing the smears. My. GP was very sensible and said its a waste of energy beating myself up now, but with all the other tests and follow ups I had it would have been just one more thing- no trouble at all really. 

I wasn't told there was an increased risk of uterine cancer either

 

My surgeon was adamant that it was caught early ( the colon cancer) and removed loads and loads of lymph nodes which were clear- I didn't need chemo. so I sort of feel that is this is cancer, it isn't related to my other cancer.

 

oh well, at least I am being seen relatively quickly !!

UKSue, now this is an area I know!  See a GYN immediately.  I'm not sure how it works in the UK, but in the States, for the most part we see GYN's for female needs.  I had cervical cancer 30 years ago.  Everything that could go wrong did.  I won't bore you with the details.  But at this point I would not take the word of a GP.  It could be displasia.  They might not know the difference.  the samples need to be graded.  You need to know what the grade is.  I forget all the grades but for cervical displasia it something like N1, N2, N3.  CIN, CIS.  you said they did a colposcopy.  That can give you a pretty good idea of what is going on.  My doctor saw with the scope that I had cancer.  So find those slides and don't do a thing until you get the full story and understand it!  I've been down this road, so if I can help in anyway, please PM me.

 

dianne

Sue, don't worry about the scope.  It's fairly easy and does not hurt.  But seriously,meet a GYN.  This can be a serious issue.  Fortunately cervical cancer is slow growing.  they will most likely do what is called a cone biopsy if the test comes back CIS or more.  If it is CIN, depending the level of displasia they will most likely let it be.  The cone biopsy is done in the OR and it is exactly what it sounds like.  It was one of the easiest surgeries I ever had.  I've had over 22 major surgeries, with most of them being gynecologic.  

 

Please se let me know how you make out.

 

dianne

 

I thought I would update. I had my colposcopy and it was carried out by an extremely experienced gynae consultant. He immediately pointed out a tumour which he said will 99.9% be cancer as there isn't anything else it is likely to be. He feels it looks localised and I may get away with just a cone biopsy or hysterectomy if nothing has spread. He has said I was not at any greater risk from my previous cancer as it didn't involve the rectum and was colitis - associated.

I am having an MRI on Thursday and they are trying to offer me the earliest possible cone biopsy under GA so they can check my rectum and bladder and get the largest possible margin on the cone biopsy. I have been told that should be within the next week.

If things are worse than he anticipates he thinks I will be referred to one of the London hospitals -St Barts- as they would be much more experienced dealing with someone with my history, J pouch etc. obviously the most important thing to me so to survive for my kids but I hope I do retain my j pouch if the worst comes to the worst

I have to say that once again, my experience with our NHS here has been excellent. I had an oncology nurse on the phone to me within 30 minutes of me getting home from my colposcopy appointment with my MRI appointment and she has also organised a prescription for a mild sedative as I am very claustrophobic. The hospital I went to has had some dreadful press lately,which doesn't give you much confidence!- however I always like to take as I find and my experience has been A1.

 

finally the the consultant said he didn't know where the nurse got her information about j pouch and smear results. He said it's very misleading and I should go back and tell her so (but  I'm not gong in there to tell a nurse she is wrong!)

I agree. She probably got her wires crossed, assuming all colon cancer is the same. But, overall, any cancer diagnosis sort puts you at higher risk for another cancer, just like UC puts you at risk for other autoimmune diseases. I guess it just highlights your inate flaws.

 

Nevertheless, it sounds like you got a first rate consultant in a quick time frame, and that is what matters! Looks like things are going in your favor so far.

 

Jan

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×