I am constantly worried and I am wondering if anyone else feels the same sometimes.
I had cervical cancer 7 years ago. I have a colostomy and an urostomy. I have a fistula which constantly leaks, PTSD and I have recently been diagnosed with radiation enteritis.
The fistula leaks all sorts including a.bit of blood. I have had 2 CT scans and I worry that it maybe something ominous and they doctors have may have missed something.
My GP checked my latest CT scan and confirmed there isn't anything ominous and read the report from the CT people who said "it is pelvic radiation disease rather than a reoccurrence". Which is great but I still worry they have missed something.
Is it normal to feel like this? I can't seem to trust anyone or anything. I am constantly scared and feel like crying.
I hope everyone is fine.
Sending you all love and good vibes,
Lisa x
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CrochetDancer
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Bless you Lisa🤗 yes that’s normal to me that’s normal. If you want to cry 😭 do so that helps. Do you have a cancer support centre near for you to talk to about your concerns
Yes, there is a Maggie's centre here in Cardiff. The late effects clinic have told me to contact them.
I guess myself and others don't trust people, our bodies and ourselves. Even when we have been given an answer, we don't trust the medical professionals.
I have had several bowel obstructions and had been admitted to A&E for all of them. I have had all the CT scans and blood tests and I was told I have radition enteritis. They missed this on my previous admittances which is why I am wondering if they have missed something else. Or maybe I am paranoid.
I am so sorry to hear this. You really are having a hard time and all I can say is that if I were in your shoes I would feel exactly the same. I cannot offer anything practical only empathy . So sorry
It is hard and I take some comfort that others are in a similar situation.
I know I should trust what the doctors say and maybe I am being paranoid over every ache, pain and itch. Plus our next door neighbours are making a lot of noise and refuse to listen or take us into consideration. Instead, we have to sit in doors with all of the doors and windows closed. We can't have visitors or sit outside in our garden. We have contacted our council who are helping us take action. It is another thing which is wearing me out. Some people are so unkind, thoughtlessly and inconsiderate.
Hi, I'm 5 yrs post cervical cancer 2B. Im currently awaiting a bowel resection due to extensive radiation disease. I've fought tooth & nail to be listened to, had PRD recognised & never mind understood. I've been failed time & time again by individual doctors yet also had outstanding treatment for others. This is the biggest issue in the field of cancer research - identification & diagnosis is of course primary but we have a number of excellent services now. What we also need given our ability to treat & cure cancers is the research and support for those having been through that treatment & the consequences of it. This is both physical & psychological support.
Everything you are saying is natural, completely understandable & justified. I can offer some opinions and share & compare experiences. PM me x
I am sorry to learn you have been through so much and had to fight to be listened to. I fully understand that.
I have two stomas (colostomy and an urostomy), plus a fistula which leaks all sorts of things from bowel fluid, poo and blood. I have been to and fro A&E for 2 years with several bowel obstructions. On my last hospital admission in April, I was told I have radiation enteritis. I asked how or why this had missed and the surgeon shut me up and told me not to go over that! But I want to go over that and what else could they have missed?.
As I previously mentioned my CT notes state "patient has a lot of adhesions and this is pelvic radiation disease rather than a reoccurrence." Which is good but I still feel uneasy.
Maybe I am paranoid or silly or both.
Pelvic radiation disease is a poorly understood and researched ailment/conditions and doctors are reluctant to diagnose it. I don't know why because they can then offer help. Or maybe that is too easy.
Hi Lisa. I'm so sorry you're going through this and can unfortunately relate to the ongoing anxiety and sense that something has been missed and you're not being listened to.
I am only 1.5 years on from treatment, but my bowel is really giving me hell at the moment. I know I need a referral to a gastroenterologist and for them to take a proper look etc, but I am just so traumatised by everything I have been avoiding it, to be honest.
I have felt unwell for the last few months with various aches and pains and have discussed this with several different gp's and my oncologist. I have found that quality of life is just not on the top of their agenda and when I express my concerns about cancer returning I'm treated like a hypochondriac.
I don't know if you are in touch with others who went through treatment at the same time as you, but I have found that there are women who sail through and recover well- which is great - but makes me feel terrified that something is wrong with me and it is yet to be found. It's very hard to let go of anxiety when you are in constant pain or discomfort.
None of us are prepared for the side effects of this treatment. It really is brutal. I try to keep in mind that complications are expected - my radiation oncologist said to me just before brachytherapy "now we have talked about bowel damage. You are aware that this procedure can cause damage to the bowel". But you have no concept of what that might feel like - and even if you did, what could you do? You would go through the treatment because you want to live.
I really do hear you. Its hard to trust, especially if your cancer was missed the first time (which mine was). I see a counsellor, but it's still hard work to live with the fear. Thinking of you xx
I get and understand everything you have mentioned.
Like yourself I was told I had irritable bowel, but I had cervical cancer. Which is why I don't trust anyone. I wasn't told anything about the "potential" damage that chemotherapy and radiotherapy could cause. I just wanted to get better.
I had a colostomy and an urostomy, plus a fistula which leaks constantly from my lady parts (no pun intented) with gunk, blood, poo and whatever else. I have back pain from a radiation burn which caused a bed sore, PTSD, the list goes on.
I have had 2 CT scans this year (February and April) as I was admitted into hospital for bowel obstructions. I was told on both occasions that there isn't anything ominous and I have a lot of scar tissue. In the CT notes/report in April, their notes read "patient has a lot of adhesions and therefore has pelvic radiation disease rather than a reoccurrence". Which is great but I still worry.
I had a couple of sessions with a psychiatrist but that didn't help because all she wanted to talk about was my childhood, which isn't a issue and hardly touched the cancer treatment, operations, TNP, my weight went down to 5 stone and I had to learn to walk and drive again. She only told me that I will always have health anxiety! Well that doesn't help me or anyone else.
This is the best, I was referred to my local effects clinic here in Cardiff , only to be told they can't help me with my late effects! So how are they operating a late effects clinic! I may contact my local health board.
Plus our next-door neighbours are making a lot of noise and sticking their nose into our business. They nose over the back fence into our garden and we can't sit out there. We are having panels put on the fence to keep them from being so flaming nosy. I am replying to you from our garden and Mrs Sticky Beak was about to come out but saw me and went back inside, yay.
I hope things get better for you. You have been through a dreadful time and deserve help, kindness, support and good luck.
If you want to chat/talk more, please don't hesitate to private message me.
I had cervical cancer over 30 year ago and I still go through times when I worry, although with some counselling, time, and being able to talk to my specialists, this has improved. I think the worrying is very normal for most people.
I remeber my GP saying to me many years ago "don't assume everything's cancer, you can just have non cancer issues". So I asked him how I was to know the difference, and he didn't have an answer!! So, when in doubt check it out, which it sounds like your doing.
There are several avenues for support to help people manage this very natural worry and anxiety. You may have already explored these or perhaps this is something you could consider. Macmillan is always a good place to start.
I am sorry I don't have any advice, but I just want to say that I understand and agree completely with all you say! Doctors just don't seem to have a clue! I was misdiagnosed for 9 months before my cancer was discovered and support for my PRD problems has been non-existent. I have had to do all the research myself and bascially tell my Oncologist wtf is wrong with me! >
I finished treatment for a rare endo-cervical adenocarcinoma in 2009 and still have anxiety about cancer recurrence or a second primary cancer. Now of course, I also worry about my damn PRD kicking off! It has only started to get bad in the last 2.5 years. Prior to that, the issues were minor. Now it's daily urgency, frequency, cramps, diarrhoea and that is wrecking my mental health, along with physical too of course!
Doctors just say 'take Loperamide'. That has side effects, doesn't always work for me and I hate taking drugs ,but sure mate cos you've no idea what it's like when this shit kicks off and ruins your day! > It's very frustrating and I wish you well. Good luck :).
I too was misdiagnosed with IB before cervical cancer was diagnosed. I worry too over every ache and pain.
I was too and fro A&E for 2 years with bowel obstructions which was put down to scar tissue and then in April 2021 I was told I have Radiation Enteritis. It really does beggar belief.
The whole thing has left me with PTSD and I am struggling most days and on top of it all our next-door neighbours are making our lives hell with their constant noise. We are trying to find a new home and move but it is hard to find something suitable. We have only been here since October last year and no one helps us, we really are on our own and we can't wait to get away from here. Next-door don't care about our health conditions, in fact they use them use them to upset us and cause us enormous stress.
Thank you for your kindness and sending you love and good vibes,
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