Cancer terminology illiterate : Hello everyone... - My Ovacome

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Cancer terminology illiterate

organicinna profile image

Hello everyone. Am reading all posts and always think " Oh this lovely people knows everything about their cancer, treatments and medical terminology and I don't know anything. English my not first language but I lived in England 27 years and of course don't need interpreter. But after 9 month since diagnoses, operation and 6 chemo , 9 moth of internet search about cancers I still don't know what is my CA125? I never saw the same oncologist twice The seem to circulate patients randomly to different doctors each visit and telephone chats ? is it normal on NHS ? And they where never gave me and figures and numbers about my blood results. Sometimes I think this is because am foreigner or may be gave them impression that I wont it understand anyway ?

Do I need to know precisely my CA125 every time & Is that important to know more than " your marker is gone down, its normal and not worrying " ? I was asking them some other questions of course but I decided not ask about "prognoses " only )) Few month ago I ask them to be able to have access to my reports and scans. Because my fiend in Russia who had breast cancer 10 years ago was shocked and surprised I don't know my reports etc. In Russia doctors talking to patients about everything apparently !

After that I was chasing Royal Marsden secretary for whole month to get me access to my reports online. Finally they send me lots of printed pages saying they can not at the moment do it electronically. And to this day I still have no free access From that printed pages I understood from that pages some information about what they cut of me during the operation and my diagnose but numbers in charts with blood results told me nothing )) Of course this Wednesday I have telephone appointments and will ask about CA and that i would like to educate me about other stuff.

32 Replies

Hello,

Here is a very good video by one of my Doctors in London an expert on ca125. He has several videos explaining things. You might find them helpful.

youtube.com/watch?v=dSreUga...

If you have a GP, they can do a ca125 test for you and you can ask them for the result.

It is usually important to know if your ca125 levels have gone up or down- but if you are having treatment, they should be looking at this.

Ca125 markers and activity can be a useful and accurate benchmark or what your cancer is doing.

I would try your GP....

Love Nicky x

organicinna profile image
organicinna in reply to Nicky100

Thank you NICKY xx

organicinna profile image
organicinna in reply to Nicky100

Nicky its pointless asking GP because I know they will say " Marsden doing this now isn't it? " And Marsden of course looking after my CA125 but not telling me numbers and not educated me what is 7 or 19 or 35 etc means And you all seems to be know everything about yours . They just said to me personally " Its gone dawn. Not worrying " )) I watched yr video and learned that CA markers not always reliable ? OK i know now ))

Nicky100 profile image
Nicky100 in reply to organicinna

I would talk to your GP. They will always do the test.

organicinna profile image
organicinna in reply to Nicky100

Not always but thanx

Nicky100 profile image
Nicky100 in reply to organicinna

They will do. Or you can do it privately. It doesn’t cost much.

organicinna profile image
organicinna in reply to Nicky100

thank you ))

SASSY196 profile image
SASSY196 in reply to organicinna

I'm at the Marsden and have a very different experience. They always tell me my CA125, have explained the significance of my CA 125 to me and explain everything in detail and fully answer questions. They also copy me into all letters and provide print outs of blood test or scan results if I ask. I would recommend you call the CNS specialists and ask them to run through things with you and at your next appointment explain to the oncologist you want all this information. Good luck, Sara

organicinna profile image
organicinna in reply to SASSY196

Thanks SASSY What Marsden you in ? Am in Sutton branch. I always had a feeling that they busy , rushed , they want to be quick with me . I asked to have access to all my reports in the beginning of the treatment. They refer to me to consultant's secretary. They said " Oh yeah you are entitled to your data of course - call this secretary number pls .Secretary wasn't returning my calls for 2 weeks , I had to remind them twice. Then she called and ask me to feel the special form online. I did that. Then she didn't call or send any confirmation for 2 weeks again. After she said sorry we cant do access to your data at the moment Meanwhile if you wont we will send you 100 pages of printed reports and letters. So I got it. But it stopped right there . As I said earlier I still need them to explain me about tests meaning but always got only polite superficial information. I don't know may be its ME not them not doing something right ....? I will try to ask specific questions again next appnt/ Thanx again to all of you here ))

SASSY196 profile image
SASSY196 in reply to organicinna

Hi,I'm at Sutton. I prepare a list of questions before each meeting, I include different options for if my treatment going ok or not. At the end of the meeting I check all my questions have been answered and I am quite assertive in making sure we don't finish the meeting until I have done that . But I also try to stay focused so I don't take too much time. My husband listens to all calls or joins video meetings and keeps notes.

I have a folder with all my information in and refer to it if needed. I had to sign something at beginning to get records, but it looks like you have done that. I get copies of all letters sent to my gp. You have a right to a full consultanion and to fully understand your disease and care. Good luck

I realised quite early on I will only get told answers to what I ask. Not a great deal is offered up. I had very little medical intervention in my life prior to diagnosis and was very ignorant of my own body to the degree I had never heard of the "omentum' or peritonium where my primary cancer was. I had to explain I needed thing explained in simple terms ,'lay man's terms. Have your questions ready. As for getting reports and results electronically I have managed this by asking my 'cancer nurse specialist' who works alongside your oncology team. To email these through to me as attachments. It might be worth you trying that,, rather than a secretary. There is a possibility that each hospital works differently. One thing I have learnt is that you have to be forceful in your requests(Not rude, just assertive)

Please don't think the lack of information you are given is anything to do with you being a 'foreigner as you put it. I think it is just there are so many aspects to this dreadful disease that certain oncologist think the right path is not to give out too much information for fear of causing even more anxiety when for some people is the exact opposite. Lack of information causes more anxiety.! Xx

Of course not rude, never I am )) I actually too never heard about peritoneum and omentum when I was reading my op report for the first time )) I will try what you suggested thanx you much xx

You are right CA125 is not always reliable. Mine was normal level and I had tumour in ovary… I would get in touch with your oncologist and tell them you’re struggling to understand, it’s a simple request and given the stress of what you’re going through, you don’t need anymore!! My oncologist had a secretary who was very good at passing on messages to him. I also had a nurse as a point of contact at the UCHL who would also advise me… failing that get in touch with Macmillan service as they may have another route to you finding out more about your treatment… good luck xx

Thank you for yr replay

Hello, I think many Doctors just don’t explain… mine is constantly surprised when I know what I am talking about! I would suggest ringing the Ovacome helpline and going through some of the terms you may come across. It would also be worth saying to your oncologist…I am interested and want to know more. Can you explain to me more about my treatment please? It might help to have some specific questions. You should also ask why you haven’t seen the same person twice and is this likely to change? It isn’t best practice and you should be given the name of the consultant who is in charge of your care. Good luck xx

organicinna profile image
organicinna in reply to Lyndy

Oh forgot to say - I know the name of my consultant. But i saw her once on one only face to face meeting when my surgical team refer me to chemo month after surgery. It looked like I been introduced to the Quinn/ And after that just regular oncologist doctors talks to you. They looking at your data on the computer in another room, then walking in and saying " Hello we never met before my name is ***** " Sometimes calling on the phone personally but more often clinical nurse calling on their behalf . They mega busy and its free NHS no privat I understand that....

Your CNS is probably the best person to get information from. They seem to have more time and there is more continuity with being able to deal with the same person. This is my experience. Was diagnosed 2 years ago and have seen my named oncologist face to face twice and had one telephone call. Basically to say "this is what I think we should do. Do you agree? Sign here if you do." I have then followed up with CNS with any queries I may have as a result of that meeting. Most of what I know now I have found out for myself via this forum or helpline. Overcome, cancer research UK, McMillan and received emotional support from 'Maggie's centre, one of which I think you have at the Marsden..

Yeah )) Thank you darling/ You right we learning more from here )) Yes we do have Maggie here. Lovely center. I v been there once before my chemo it was nice visit ))

Thank you Lyndy. I don't know why I never asked like that. May be I was worried it will scare me ? ))

I think you could approach the Clinical Nurse Speclalist and ask her to go through what they’ve said and explain any terms you are not sure of… my daughter works at a London hospital and it’s really routine for patients to have an interpreter or for more time to be given for explanation because for many their first language is not English and even if it was..this is quite technical stuff which none of us know when we begin treatment. Remember you are treated with your consent…you can’t give consent if you are not sure what is meant or haven’t been provided with information, like your ca125 xx

Thank you Lyndy but I don't need interpreter at all . My English is good and fluent. I think and dream in English. Half of my life in England. I only said that I though I gave them impression I wont understand because of my heavy accent . I remember I ask one of my oncologist after the operation " What is my last CT scan report said please " she said " It says a lot but you only need to know its clear"... and I can be tongue tight sometimes ))

SASSY196 profile image
SASSY196 in reply to organicinna

You need to know what you want to know. If you want to know the details a scan says, she needs to explain it to you more fully. Lyndy is right you need to fully understand what is going on to give informed consent. It's easier said then done but try to be confident to ask for detail when you want it. It's your body. Can you have someone else join meeting by putting phone on speaker to support you?

organicinna profile image
organicinna in reply to SASSY196

No I cant really have anyone with me. Its always only me. and now its mostly telephone appointment after blood tests . I usually come with a list of questions and checking it. I just never knew I need to know my CA125 and other tsts to navigate trough it. I was asking about it but only got "Its norm, limits or its not worrying " But OK I will learn am sure. And already learnt a lot thanx to you all/ I did not mean to moan and complain / just been curious ))

SASSY196 profile image
SASSY196 in reply to organicinna

You're not moaning. You asked a good question. Good luck

CA125 is a marker in your blood which can indicate ovarian cancer, but it can also go up if you have any infection or inflammation anywhere. Mine even went up after the covid jabs. It is a good indicator for some women and not for others. All the oncologists I hear from say they prefer to rely on scan results. If they say your maker has gone down or is level then that is a good sign. There is not much point in worrying about your exact CA125 level as long as your doctors are keeping an eye on it. Some of us get obsessed about it, when it is just a good indicator for some people and not for others.

I like it when they give me different oncologists. They all discuss things together in MDT (multi disciplinary team) meetings so they all know what is happening with each patient, but I like it when another doctor talks to me as I get a different perspective. Also I think a fresh pair of eyes looking at my progress is a good thing.

I don't get my bloods results either, but probably would not understand them. I just ask my oncologists how my liver and kidneys are doing and if my antibodies are ok. That is all the figures really tell you. So long as you have oncologists looking at them I would not worry. We have enough to worry about without going into all the small detail.

Take care and all best wishes x

Oh I can not thank you enough, your answer was incredibly reassuring and relaxing to me. That was what more me. I felt that am more like you describing )) And to have different oncologist - yeah you opened my eyes not to feel ben passed over . Thank you. thank you. xxx

Thank you for replying. Glad if I helped. Love and prayers x

Hi there organicinna

Thank you for your post and for sharing your experiences. I’m really sorry to hear you’ve felt excluded from your care. It's great to see you've had some informative and supportive replies from our forum community, I wanted to share our resource explaining a range of medical terms, which I hope may be of helpful:

- ovacome.org.uk/medical-term...

Several of our forum members have kindly shared their knowledge on the role of CA125. In addition, The Foundation for Women’s Cancer (a non-for-profit organisation based in the U.S, who support research, education, and public awareness of gynaecological cancers) published a booklet in 2017 titled ‘CA125 levels: Your guide’ which explains more about CA125 and how it is used in a clinical setting. It’s available to view via their website here: foundationforwomenscancer.o...

The booklet explains that whilst CA125 can bring valuable insights, it is a non-specific marker that does vary greatly from person to person. This information highlights that CA125 can fluctuate or become raised for several reasons. Please consider discussing this with your clinical team who will be able to give you tailored guidance based on your own CA125.

We’re here to support you. If you would like to talk things through, please don’t hesitate to give us a call on 0800 008 7054. You can also chat with us directly through this forum or email us at support@ovacome.org.uk. We’re happy to speak through anything that’s on your mind.

Best wishes

Annie

Ovacome support

thank you Annie thanx a lot ))

We were all ovarian cancer illiterate at the beginning of this journey, I don’t think there are many people who start on this who know ca125 from their Audi A5 😂 best thing is this that this forum adds to your dictionary and knowledge. Stay well, xx

Thank you darling xx ))))))

Hello!I am a British national and get the same responses that you do . No-one has ever told me the numbers when I ask about CA125 levels. Maybe they dont want patients to fixate about the numbers and get too worried. I have my bloods checked every month. Now I just trust that I will be told if the levels are going up. Maybe once every 6 months I will ask for the numbers.

Good luck. Stay healthy! X

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