I have the opportunity shortly of doing a presentation to a group of Uni health students. This is part of the program where a charity rep also does a presentation, so they'll be covering the basics of OC. My role is to talk about my own experience.
I have some thoughts as to how to structure it and what to cover. I know others in this group have also done similar presentations to medical students. However, I thought I'd ask if there is anything that immediately springs to mind about everyone's own personal experiences that you think should be raised.
I'll definitely cover the diagnosis process as I was fobbed off many times by my GP practice and given an incorrect IBS diagnosis. I had every symptom on the list of OC so I can also talk about those. I thought I'd also cover what it's like to be diagnosed with advanced cancer at initial diagnosis. Also gene testing as I've been through that too. The other areas I thought I'd bring up were the misconceptions that I've experienced, e.g. the assumption that cancer is done and dusted (I still have it). And I'm thinking of using some of the comments I've had from people and challenging those comments, e.g. I wish I had your nice flat stomach (post surgery), well you're ok cos your scar healed, etc. I also want to mention what it's like to be living with cancer and to try to comment on some positives like not taking today for granted, etc.
However, there are so many aspects of OC that people are not aware of and I may not have experienced personally but may be worth commenting on too.
I'd really like to use this opportunity as best I can to raise awareness of OC. I'm always surprised as to how disinterested my friends and family have been. Interest seems to tail off at the point of realising that I still have cancer. So to have a captive audience who have to listen to me is a real privilege and I'd like to use the experience for maximum effect.
I'd also like to make sure I get the main points across and don't overload it with too much stuff. I have so many thoughts and I think I just need to structure them.
Thanks all.
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koffeekat99
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What an opportunity! I’d tell them to listen to the patients, they know their bodies better than anyone if the patient feels something is wrong and they have a history it’s worth investigating further xxx
Is this the Ovacome STS programme? I’ve signed up to it too, but each time I’ve volunteered, I’ve ended up too poorly to attend!
I went through my ‘story’ with Ruth, and she helped me put together my talk so that it fitted the requirements. It’s around 1,000 words long because you only get a certain amount of time to talk. I don’t mind emailing it to you if you think it would provide some inspiration- drop me a private message if you would like it.
It's not the Ovacome one though I did sign up to that one too. I think there just hasn't been a local opportunity for me yet through Ovacome. But I think the idea is similar that the charity cover the overall stuff and I'm there to put a face to OC.
I have been through that chat with Ruth too. I'm just finding it difficult to get what I want to say into something more concise. There is so much that could be said where I think awareness is lacking but it's just a case of prioritising it and me not ending up waffling I think!
The one thing I’d raise is that all cancers are different and that living with cancer or the knowledge that you are almost certainly going to recur is very different from living post cancer diagnosis for one which is less likely to recur or can be “ cured” - a lot of post treatment support offered by the likes of Macmillan are based around things that work for the likes of the latter ( what I call the breast cancer new normal model ) and far less understanding of how to suppprt those in the former group such as those with OC .
So glad you are doing this! I suppose I would want them to understand that patients sometimes can’t take everything in at once, that we often hang on every word and that when there is doubt we need to be told- we are grown ups, we understand they don’t always have the answers xx
Listen to patients they know their own body and when things aren't right and radiology isn't always as it seems either, I was misdiagnosed for 2 years and had two clear abdominal and pelvic ultrasounds and pelvic MRI I presented with symptoms of bloating, frequency to urinate, feeling full looking pregnant and tired I was treated for IBS as scans were clear then developed intense shoulder pain which was again investigated by MRI and came back clear as the pain was from ascites pressing against diaphragm, then I got rib pain then had a chest XRay that was clear I never had bloods taken and never heard of the CA 125 until two months after a clear chest xray I presented at A&E with plural effusions. and stage 4 ovarian cancer.
no they said it wasn't detectable I did challenge the MRI scans and I was 35 so they said it was normal follicle cysts related to the menstrual cycle, They also never used gadolinium contrast they don't use it or repeat scans if everything looks normal. they never did Ca 125 and my ovaries were within normal size although I was extremely bloated. I had that scan in June 2016 and was diagnosed stage 4 in Nov 17 so they said the cancer only became detectable between the MRI and diagnosis. It doesn't seem right to me that the MRI and Ultrasound wouldn't pick it up when I had bad symptoms.
I'm sorry, what an awful experience of the system. It seems odd that no one did the CA125 test even if it's not always reliable. I thought that was done when you are referred for the first scan. So it does seem like an oversight.
What a great opportunity. I had OC last year. I'd love to talk to a room full of students. I do have one student who willingly got my consent to use me for his case study. I feel honoured.
Please try to make them aware that not all Ovarian Cancers show a raised CA125. I had clear cell with a reading of 7 and this could so easily have been missed - it was picked up by an expert radiologist at stage 1a (on to 1c through burst during surgery), so I was extremely lucky.
So agree with this point ... Which is vital really vital to get over to the the students ... My OC was a very rare type MMMT ... Never did I have a raised CA125 .... .
I think the fact that it is not always reliable will be covered.
One message I'd like to get across is to look at the patient. I was very visibly ill, was repeatedly fobbed off and the CA125 wasn't even considered for me for several months. By the time it was done, the ultrasound results were in and showed a lot of growth. So I'm not even sure it achieved anything by the time it was done even though it was a high reading for me. Despite my initial high reading we don't actually use it to monitor my disease.
So yes I'm sure the reliability of the CA125 will be raised.
I would stress the importance of encouragement, and congratulating the patient on positive progress if at all possible. If someone tells me I'm looking well, then I feel it. Whatever the many negatives of this disease, there is always at least a little positive to focus on and keep hope going. Some doctors have made me feel empowered, others deflated. Guess which ones I prefer.
Yes I've realised I need to try to include something positive in there. If I talk about diagnosis, or lack thereof, for too long I might look like I'm bashing the health service. There are also some examples of how doctors have treated me since diagnosis that are really positive.
'Hope' is something that I plan to include as it is important.
I would tell them that a patient can have a very high CA 125 at diagnosis, however at reoccurrence it can remain in the lower end of the normal range. For some women it becomes unreliable.
I had the opportunity to be a case study for a student and was also used in a practical exam for final year students.Their ignorance of my diagnosis was very worrying.At the time I already had a colostomy from OC and none of them had seen one in their training so that was useful training.Take the opportunity to talk about signs they must look for as most of us seem to have had a late diagnosis.Also my OC has always recurred when my CA125 is above10,Luckily my specialist takes me seriously though other doctors over the years have told me that I am fine.Also the psychological toll it takes being “brave” all the time.Also family and friends get fed up with you after the first year and tend to ignore it after being initially very supportive.
Oh wow. I'm at a teaching hospital too and recently my appts have fallen on university holidays so I haven't see the students for a while. But I had to sign a form in the surgical waiting room for students to be able to examine me whilst I was under anaesthetic. I said as long as you don't get to hold any of the sharp objects. It was quite a nerve-wracking time to be asking me for permission for do things!
The issues around CA125 seem to be cropping up a lot so I think it's something I need to incorporate if it's not already covered elsewhere in the session.
I also feel ignored. It is surprising how many people seem to forget that I still have cancer. I guess that's why I'm looking forward to this session. I cannot be ignored
The way to tell a patient that they have cancer is important. The use of sensitive language and empathy can help the shock and stress. A suggestion of reading some books and having some cake in the canteen don’t cut it. Neither doestryjng to get sympathy from the patient because their job is so hard ( giving bad news). Listening actively and finding a way to suggest it isn’t an imminent death sentence is really important.
If that's your diagnosis meeting then, just woah, what were they thinking?
I do have a story of when a doctor first mentioned the word 'cancer' whilst I was still having the various screening tests. He thought someone had mentioned it already and started just wittering on about chemotherapy, etc. I had to stop him and made him hand my notes over so I could read them myself. My notes said 'high probability' of cancer for a couple of weeks and no one had thought to mention it til then. He was on the back foot for the rest of the consultation.
So yes, can definitely touch on that moment as being important. But really, have some cake and read some books? No cake is that good.
Yes it was my experience and the shock was overwhelming. I had been warned it might be a possibility but I’m glad I haven’t met this particular doctor since even though she’s still on the team. The consultant I have now is much more considerate and empathetic.
Your experience shows how important communication is between the various doctors is and an understanding of the impact of the news in terms of shock and stress for the patient is a major factor .
I had an emergency ultrasound and it showed a huge cystic lesion - nothing much was said other than I’d need surgery - then I got a phone call for ct scan out of blue and a few days later , a letter from consultant about swelling in my tummy !!! Day before scan the specialist nurse rang up and started talking about cancer over phone and I had to get husband to continue conversation - there are ways of being told and a phone call isn’t one of them ! Whether it’s becsuse I hadn’t initially gone to gynae clinic I don’t know but that and the subsequent way I was told in hospital after my surgery have letft me with PTSD and issues of trust around my team - I dread the phone ringing and mail coming . If you have a long term health issue it matters how it is initially handled as a bad experience certainly colours your view and ability to deal with things .
Hi, sounds like a great opportunity for you to share your experience of having oc. The few points I would like to add would be not to underestimate the long lasting effects of fatigue and how debilitating this can be even to someone quite young and very active pre-cancer! Also being aware of the huge impact of what they say around diagnosis. Been told from the beginning there was no cure was devastating, a balance of some hope with possibility of recurrence would have been easier to live with. Also worth saying how hard it is adjusting to living with uncertainty and how routine monitoring appts can be stressful. The huge impact that the illness can have on your employment, finances, hobbies etc but then also the positives that it can bring such as not taking things for granted, enjoying life, new friendships, interests etc.
Yes, I identify with all you say there. The fatigue is very frustrating. My family members look bemused at me when I need a 'rest day'. Someone asked my husband recently why I was tired and he just looked at her and said "because she has cancer". Their response was, "yes but why would that mean she's tired". I'm not sure they had a genuine interest in the mechanics of cancer and how that causes fatigue so it felt a bit like he had to justify my tiredness. Fortunately I'd sent my husband an article about cancer and fatigue a few days previously and he did a great job of explaining how advanced cancer causes fatigue. They lost interest in him half way through the explanation!
On the whole 'incurable' phrase at diagnosis I thought I'd use the term 'sledgehammer through my life'.
Can I just add something that may sound trivial but I am sure we all get frustrated by? Namely the amount of time you spend as a cancer patient waiting around at hospitals. Waiting for out patient appointments, chemo, blood tests, scans, drugs - the list goes on and on and it seems everyone thinks it is okay to keep us waiting- always!
Having OC can often feel like a full time job anyway without all the waiting around that seems to go with the diagnosis.
Our time is more not less precious now we have cancer not to mention the detrimental extra fatigue and stress waiting around causes.
We all know the NHS is busy and strapped for cash but a bit of creative time managent and common sense could work wonders. Plus a understanding from the professionals that the time we spent waiting for their part of the process could easily be only the most recent of the multiple delays we regularly endure.
Yes I certainly agree with that. I did mention to my oncologist that I didnt want to spend loads of time in hospital and nice though I thought she was I’d prefer to see her as little as possible!
To this day she still ends our consultations with “and stay away from doctors til next time”.
Traipsing in and out of hospital does seem to be something people don’t really ‘get’ til they have to do it.
What a great opportunity for you to share your knowledge and experience!
Stress the importance of actually looking at the person and listening to the symptoms-not just depending on scans and blood work. Also, the importance of physically examining a patient-if someone says their abdomen is swollen, surely you can feel it, but so often it’s not even looked at!
My experience is more on the positive end because my clinicians took my abnormal bleeding episode seriously and didn’t just brush it off as a ‘hormonal surge’ as I read on Google.
And even though my ovarian cyst looked only slightly suspicious, they followed up 3 months later with another. It had a minimal increase in size and my CA-125 remained low normal, but because one of my aunts had died the year before from ovarian ca, I got twitchy and wanted it out. My surgeon was the most shocked when the ‘cyst’ turned out to be cancer. It was diagnosed 1a high grade serous, so in many ways I am lucky. Reading so many stories where women’s symptoms are ignored because scans don’t show anything makes me so angry.
All the best and thank you again for taking part in teaching these young doctors.
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