So after the initial diagnosis in 2016 and the usual treatment, I'd had 4 1/2 years of ok health but continous and troublesome constipation. I was being regularly monitored and ct scans showing no problems. No one was concerned so I slept easy at night. I continued to take unsuccessfully in that time (as professionally advised) many and all sorts of laxatives. 15 days ago whilst on a trip to catch up with our family I was admitted for an emergency operation, a gastro intestinal blockage which has left me with a stoma and a 15cm mass which hasn't been removed. A diversion was performed. How could this have been missed with regular scans and follow ups? The hospital that treated the emergency saw it straight away and an sigmoid endoscope confirmed. It was that simple. Yes, I'm confused and a little bitter.
Disappointed, concerned and broken for my husband, my family and friends but making small and steady healing progress. I am determined I will continue to walk forward on this rocky path and currently putting into place my next steps in taking my own and a more personal control of my journey that many of us Teal sisters have to endure.
My love and best wishes to you all, Jaki xxxx
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Oh Jaki ,how terrible you must feel , I totally understand that ,and angry ,I can't give you answers but I can sent you love and hugs and wish you well on your new journey.xxCheryl
Absolutely it happens far to often. I read and hear of it time and time again that symptoms get missed. Obviously we don't know in the beginning what those symptoms are pointing towards and we're not experts but rely on them and it's diabolical that even with awareness the obvious symptoms continue to be overlooked.Onwards and upwards. Much love xx
Jaki, I’m so sorry you had to have emergency surgery and must now manage new health challenges. I’m glad you shared your experience. Like so many, I continue to battle constipation. I hope you have a smooth and speedy recovery from your surgery and that the mass that was found will be successfully addressed. Best wishes from Louisiana,
That riles me up that it was missed which has caused you more grief along the way, the very fact that follow up sessions are on place to look out for new issues arising and that it was missed at 15cm is concerning to say the least. Wishing you well on this new journey as you undertake it.
I am routinely scanned every 3 months since my ca125 has steadily increased since last year. No concerns detected and my continuous constipation always answered with "increase the laxatives"
Have 2 sets of appts one with the surgical team that is now 6months and the other is with the onocology team which is 3 months if I have an issue as I had last year after the op they sent me to get a CT scan ...am concerned with what you told them about the constipation they did not send you for any type of scan which would have detected the issue, really angry with the fact something could have been rectified.
Hello Jaki, my prayers are with you and I’m so sorry to hear what you had to go through after 4 1/2 years of good news. But I guess that’s why on the walls in a Doctors office their plaque reads License To Practice. Praying Gods touch to heal you. 🙏🙏🙏
I’m really sorry to hear this. That feeling that your symptoms were overlooked is all consuming Jaki. When you feel stronger and able to contact the PALS team ask them to investigate. Your oncology team should already review and give you some answers and a plan for further treatment. Has there been any suggestion of surgery or chemo? I hope you get some satisfactory explanation. If you feel you have lost trust in your team is there somewhere else you can be seen?
Hi Cheryl, There was talk of chemo to reduce the mass which was from the team that dealt with the emergency. Now home I'm waiting on contact from my consultant or the local hospital. If its possible to have surgery to remove as much of the mass first (as its quite large) and chemo to mop up this would be my first choice . I have sent emails to the consultant for answers to my questions and a review of the emergency hospital findings which should be received by now. A change of consultant is very likely.
So sorry to hear this. We often are made to feel underqualified to push for more information but so often this happens. Don’t get cross with yourself but make sure you get all the right people on board to sort this out. Wishing your family the strength to give you support and all the good wishes from the Teal Army to get this right.
Thank you. I will keep you posted on progress. Just can't understand how it went so far in the wrong direction. Hoping for reply to email or some form of reply early next week. I would hope.
It’s not acceptable that you had to go through that. Thank goodness you were on holiday and seen by a different hospital. My heartfelt good wishes are sent to you wishing you a speedy recovery. I too had a 3cm tumour missed in July 2019. I kept reporting that my stomach was getting bigger and told it was my incisional hernia and my scan was clear. I moved area and in Oct 2019 my new Onc informed me I had a 9cm tumour between my stomach and pancreas. Three times the size and effort to get rid of it, 18weekly cycles of paclitaxol and carboplatin. 7.8 ltrs of fluid drained from my stomach 3 weeks of a blocked bowel and rushed to hospital with Sepsis. I won that battle. Our bowels seem to be of constant concerns. I requested an explanation in Oct2019. Initially everyone was shocked then they distanced themselves from my concerns. I persisted numerous times eventually contacting PALS who in turn were ignored I escalated it again. In March 2021 I received a letter the bottom line being that an individual had missed the tumour and after such mistakes they always call a meeting to discuss. The meeting wasn't held until February 2021. I wondered how many more wrong diagnosis there were before me or after me in the 14 months they took to have their meeting. Radiologists need to have their work verified, safety procedures should be in place. Patients should be responded to with dignity and not be made to jump through hoops to get a response particularly when battling through the Chemo regime.My stomach currently is huge and I’m awaiting results of an ultrasound. I know it’s going to be another challenge to deal with for a 3rd time but as you know we pick ourselves up and move forward again. We all need to be pro active and vigilant it’s our future that’s at stake. Much love sent to you.
Oh Jaki! This is so unfair 😢You certainly have some tough questions for your oncologist. Have you applied for your health records? If you haven’t seen the CT scan report it might be interesting to see what is reported on that.
I wish you a recovery without incident and also a plan that deals with the mass (maybe a way can be found). My heart goes out to you.
Well crap. Am so sorry. They should have looked more thoroughly for the occlusion. Of course we all say that now...it appears some CT scans are more sensitive than others . The good news is you have taken on the challenge assertively this is good. You are the client. They work for you. Bon courage as we say in french. Big hugs from paris
I read all the time that CT scans dont pick up tumours until there are a ‘certain’ size, despite rising CA125. So i do question the wisdom of depending on them in such circumstances. Why not go for the PET scan instead, which apparently picks up cancer much earlier? Ive asked for one instead of my usual upcoming CT scan but was declined. Reason: “if anything is seen on the CT scan then a PET scan could be considered”. I know PET scans involve more radiation that CT but whats the point of CT if basically in ovarian cancer and reoccurrences its performance is very poor in picking up till much later.
Exactly! I feel so sceptical of CT scans but can only get what the Onc orders. Hope for good healing now for you Davonian now that you have this blockage removed. Does anyone get palpated by any drs at appointments? Would palpating pick up anything untoward? Could we be trained to palpate ourselves I wonder?
Hoping I can get to see Prof C when and if the time arises. Would have liked to have seen her before chemo started which is next week. Hoping her diary will have a space for me when needed. xx
Hi Jaki, a similar thing happened to me nearly 3 years ago during my debunking op. The surgeon said she had removed all the cancer she could see except a 15cm mass on my small intestine, which they were almost certain was benign but inoperable. It had never been picked up on any CT scans. In 1999 I had a CT scan which revealed a grey mass so I had an exploratory op. They decided the mass was benign so didn’t remove it. I assume this is the same mass which was discovered during my debunking op. in 2018. Why it was picked up on a scan 20 years before yet not picked up on any scans since I really don’t know. I’m sorry your op left you needing a stoma. I hope you learn to cope with it and eventually get some successful treatment . All the best to you Jaki.
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