Morning all - I have seen my Surgeon and Gynecologist on 4 separate occasions, apart from the fact that I appear to go deaf and dumb at the meetings, they don't seem very forthcoming in telling me exactly what is wrong with me. Yes I know it is Ovarian Cancer but what type? Stage? (just saw IV on ct report)
My Surgeon decided I was not well enough for the surgery that the MDT had planned, because of pleural infusion and my subsequent shortness of breath, so I started Chemo. My husband goes with me to meetings and he says I am not asking questions because I don't really want to know, I suspect he is right but is it a good thing to continue with my head in the sand! Or should I be braver and start asking questions? and if yes does it help come to terms with it all, still can't quite believe its happening and maybe they have made a mistake. What did you do?
From a well seasoned ostrich who likes the info (researcher) but also doesn’t. Confused? Me too. I write down everything I want to know then sub group like a mind map. I revisit it and take the crumbs of what I think are pressing questions on a piece of paper.
It does depend at the time what I feel I need to know the most. Anything that I’ve been thinking about regularly goes on the list. Additional pop ups are discarded but I do keep a note of them incase it starts to become important
I think knowledge is power but I am squeamish with it lol. We all have our own way and Im sure you’re going to lots of great advice. I often check in here first for feedback
To begin with, I was like you. Up until the point after my surgery, I didn’t want to know anything about cancer. I didn’t look at websites, didn’t do any research, didn’t ask any questions.
Then as I was feeling a bit better, I started to be braver and speak up. I poured through my histology report from surgery and found it fascinating- a dispassionate report on my assorted body organs and the sorry state they were in, written by someone who neither knows me nor cares about me. A very interesting experience!
I started paying more attention and researching more thoroughly. I asked for copies of everything. I think for me, I was too scared to find out too much in case it made me feel like I was going to die. It was only once I’d decided I wasn’t dying, that I was able to face it. Does that make sense?
A lot of depends on the personalities of patient and oncologist and what stage you are at. Initially I was so horrified I didn't want all the information eg about where the cancer had spread to and went on a 'need to know' basis. But we learned quickly to be informed - my husband always comes with me and we have a full list of questions. Over my three years of living with OC I have become bolder, informed myself through this site and the support of 'cancer buddies' and changed my oncologist when I didn't feel she was cheering me along for my achievements. This has made me feel empowered. I think a good rule is that you should always walk out of the oncologist's room feeling there is a chink of light - some have a way of doing that. If it's not happening, then you're not going to feel like fighting the cancer, and that's not good. Very best of luck to you.
My original Oncologist was amazing, I trusted him completely, but he was out of his depth and needed to transfer me to what he considered to be " the best cancer hospital in the country" and the surgeon who he himself trained under. All very commendable but the surgeon and new oncologist are distant and detached, I realize that perhaps they have to be to do the jobs that they do. My CNS nurse is lovely, but overworked and rarely available.
Yes, they need to maintain some professional distance. But encouragement is important too. And getting to know you as a person rather than just your disease. Hope things improve as you proceed - important to keep power in your hands and change anything you are not happy with. All the best. x
Oh Lyn, you are asking a BIG question. To know or not to know? It comes down to a personal preference but sometimes you need to give yourself a talking to. You need to know about what’s happening to you and what your option are to be certain you are getting what’s right for you.
Do you and your partner have the kind of relationship that would allow him to do the finding out and just to pass onto you what the choices are - you do have choices . For example, you can get a second opinion about surgery.
You also have to consider that you are not the only one trying to deal with your OC. Your family -especially your partner- has to find a way to cope too. Members of your family may need support from outside or need to know more than you can tell them to allow them to cope.
You (or family members) may need some emotional support from outside the family. It is hard to come to terms with OC so some counselling might help you- just to pour out your inner feelings to a stranger trained to listen can help.
About knowing? I always want to know everything. I checked up on all options and treatment and checked how qualified my clinical oncologist and surgeon was. When the letter from my Onc didn’t match our discussion in the consultation I got him to change it. I ask for - and get - every blood test printout and CT scan report. If not straight away I fill out a form and request it. It has proved very interesting- it us surprising what medical professionals DON’T tell you. I feel in control of my cancer and my treatment- it works for me! And I do have a wondeful rapport with my Oncologist, we have a good laugh about my need to know!
I would say that you always need to go in with a list of questions. Be obvious about it, refer to it and run through it before you leave your oncologist’s room to make sure all are answered and answers haven’t raised more questions. It is the only way - the strongest of us can fall apart in the consultation room, I have!
As to surgery, you may be having chemo that could pave the way for surgery in the future. Maybe not, but it may be still possible. I am stage iiic not iv, if you are iv it may be different for you. Check out my profile to see what I had.
Hello Iris - Wow I read your profile, you are a survivor! I will find the answers on how to feel comfortable on my journey, your right we are all different and have to find our own way. Good luck on your planned trip, I am sure you will have a fantastic time. !
Why not write down a list of questions you’d most like to know the answers to and keep reviewing it. Then next consultation ask say two of the most pressing questions. You could even read from your sheet of paper. Prime your husband to listen to the answers though as it’s amazing how easy it is to get sidetracked onto a different subject.
Do you know if it’s proposed to have the surgery after a few chemos? I had four then the op.
My next meeting with my Surgeon will be after my last chemo and subsequent CT scan, the results of which will determine whether he goes ahead with an op or not. Deep down I think it is going to be not! and I am trying to prepare for that and ask questions, second opinion etc. I find him stand offish and a little intimidating, so it probably effects how I react to what he says.
Hi Lynn Tough question. The thing about asking questions is being prepared to hear the answers. Once heard they aren't forgotten. I don't totally consider myself a 'bury my head in the sand' type of person but I don't ask questions unless I really am prepared to know the answers. I only had my stage confirmed in error. I knew (correctly) what I thought it to be, my mum having had OC so I was fairly familiar with OC anyway. My take on it is I have Cancer, I'll do what the experts advise and for me it's serves me well for the last nearly 11 years even though I was told 'you have a couple of years'. Write down the questions you want to ask and are prepared to accept the answers. Best wishes. Kathy xx
"You have a couple of years" is my worst night nightmare! I have never wanted to know how long I am going to live for, that forces you to make decisions about your future, I am happiest living in the now, I don't think of yesterday as its been and gone, tomorrow never comes so why worry about it today.
Thing is Lyn I didnt even ask the question, got told it by a Macmillan nurse whilst recovering from my op in hosp, then again on a check up visit then 'your cancer will return and shorten your life' by a CNS. My next CNS was angry, said 'how does she know!' I prefer not to know tyvm. Some professionals need to think before they speak in my opinion. xx
That's awful! something similar happened to me, I asked my oncologist about a hysterectomy, she said "it wont stop it spreading" I was so shocked I didn't ask any questions, just came away with it going over and over in my mind. I need to pluck up the courage and ask her next time.
When I asked my Onocologist if I'd had a hysterectomy some years ago would I have not got cancer he said "I'm not going to answer that!" They just dont really know! However, at least I got some peace of mind that getting the cancer was just bad luck, so I just carry on from there!xxxDawn!🌺🌻🌺
Totally right Dawn. When my dad was diagnosed with lung cancer at the age of 49 he ask his onc how long he had to live, he replied 'how long is a piece of string' . That Dr had an accident 2 weeks later and died, Dad lived until just before his 82nd birthday. xx
Hiya Lyn, when I was diagnosed in February this year, Stage 4 Inconclusive due to biopsy, but at Team Meeting they determined it started from the ovaries/fallopian tubes) at the 1st meeting with the Onocologist he gave me between 1 and 4 years to live. As I felt fine except for an ache at the top of my left leg, I asked him if it was worth having chemo? He said it most definitely was! To tell the truth I couldn't believe deep down that I was going to die...admittedly I was indeed frightened at the uncertainty, however, as I was determined to win, I tend to ask what I want to know, and let the Onocologist tell me what he wants me to know as I focus on the positive, whilst my husband wants a more in depth question and answer session! As he can't make all the appointments due to hanging on to leave for possible future emergencies, I get him to write down his questions for me to ask as it's so easy once you are talking to the Onocologist to forget what it was you wanted to talk about due to getting sidetracked into another topic! Anyway, as I responded well to carbo/caelyx I now have 2 more 4 weekly chemo sessions, and then checkups - doesn't look like any op for me either, so I'm just gonna live and love life and hopefully IT doesn't return! I can also add that over the 8 months of treatment this year, I have "thawed" my Onocologist out and he has now become very friendly, smiles more and makes an odd joke! If course, understandably when the news is good it's much easier for oncologists to be this way, but a full focus on the positives, a faith in God/spirituality and the enjoyment of what we have in our lives at this moment, plus a more friendly rapport with our Onocologist can only make life easier whilst on our journey! Sorry this post became so lengthy! Take care!xxxDawn!🌺🌻🌺
Hello Dawn - I don't want anyone telling me how long I have to live of that I am sure. My CNS nurse told me the stage IV notification on my report was just a number and to take no notice, as everyone is different, you can prove your Oncologist wrong Dawn and still be here in 10 years time chatting to me on here!
For me Irisisme has said it all. I have to know every detail. By the time I saw the oncologist after diagnosis I appeared to know more than her! Maybe she wasn’t used to people like me who wanted every detail good or bad. Unless I have information I cannot ask the questions so I can make decisions on my future or if I should get my affairs in order or wait for that number 9 bus. However, I have always been like this and am aware others are different. Whatever you are comfortable with. My other half is happy with what I tell him about the situation as he knows I am comfortable with the way I go about this horrid disease.
A discussion with hubby the plan for the next appointment might be in order as close family do have a vested interest. Is there stuff he would like to know?
Hmm...my initial answer was I am one of those who have to know. Like Fay and Irisisme I can't work out if they have my best interests unless I know the options /details. But that may be because of being a nurse or it may be because I've been ill with other things and let down by the doctors on occasion, so I'm less trusting these days.
Then it occured to me that forums like this may make people feel as if they ought to be asking those questions. In the days before computers I can think of 3 relatives who had cancer and never asked a solitary question - they put their faith totally in the hospital. In fact one relative told me she wished they would stop giving her information and just get on with it and get her out of there. Thinking back to my initial appointments, I don't think I would have worried about type and stage had I not come on here and realised everyone else seemed to know the nitty gritty. This gave me the sort of questions I felt I 'should' be asking. But everyone is different and it's a personal choice. I think your best bet is discuss it with your husband, sort out the questions you really feel you 'must' know, and write them down. If there are things you feel you don't want to know but it would be helpful knowledge, maybe your husband can act /find out on your behalf as your significant other...
Hi Lyn. As usual the ladies have come up with some terrific advice. For me, the need to know as much as possible is paramount. Then I feel I have a modicum of control. There is much experience and plenty of sage advice here. I hope you work out what’s right for you. With best wishes Jo 🌸🌻🌺🌼🌹
There are times when I ask more questions, and times when I don't even take out a pen and my notebook. It all depends on how much I can handle. My husband comes with me to all appointments, so if we don't write things down, at least we have a collective memory of the appointment.
If I have too much information from the doctors, I'm overwhelmed. But on the other hand, I pour over these posts because of the practical knowledge I get, especially when it comes to chemo and side effects.
I suspect (given that you've posted) that perhaps you're ready for a little more information. Why don't you pick one question and see how you react to the answer?
Hello Nancy - One question is a good idea. Not sure which one yet but I suspect it will depend on the outcome of my next CT scan. I want to know more but am scared of the answers, does knowing put you in control or just give you more to worry about, given that you can't change the diagnosis. I have until the 28th August to work it all out and get it organised in my head.
I totally agree about writing things / questions down. I don't do it every time, but I am in the process right now of making a list of all my current symptoms in order of worst to not so bad... for appt tomorrow.
It is our window of opportunity and best time to find out what we want or need to know... otherwise we come home and ponder what's going on.
As the other ladies say maybe start with just a couple of things first... yes some oncologists are definitely less forthcoming than others but if you don't ask they will assume ( my opinion) you don't want to know....though a simple ending to a consultation in my mind should be from them
" is there anything else you want to know/ ask...?"
One onc I sometimes see says this and it makes me feel as if I am not wasting or using up their precious time... and it is great to reply.."no, I think you
Have answered all my questions"
You know you can ask for a copy of any important paperwork...? There will be one detailing your diagnosis .i have a file of copies of scans, signed agreements to chemo and of course diagnosis. although a lot of stuff Is medical language it can be the basis for further googling if you want to know more or questions the next time!
Lastly i keep a diary of stuff going on... two years I down the line I find it invaluable to check dates, chemo treatment, symptoms etc. It's so easy to forget or make links otherwise
As everyone says you'll find your own route through this, but so interesting to read all the different approaches to levels of info they need
Yes, the diary works for me too, I’m on my fifth book now! I can refer to my cancer diary to answer any questions. Daily pain on a 0 - 10 scale, fatigue, appetite, bowel movements, medication, exercises, side-effects, sleep problems - it’s been very useful and is now part of my daily routine.
Iris xx
From the time I was diagnosed I didn't ask staging and I still haven't asked, I get drip fed on a need to know basis and it suits me, I have begun to ask questions mind you. I go dumb at the check ups for the most. My husband doesn't ask anything at all because he wants everything to be right in his world. Maybe you should be asking if when treatment has ended will you have surgery and if not why not.
Hi Lyn. Ah.. different strokes for different folks. Whatever works best for you, would be my answer (yah I know, that's not very helpful, sorry).
Personally, I do want to know everything in detail, but on the other hand I tend to forget half of what the oncologist said, so whenever possible I get my husband to come along and lend me a pair of additional ears.
Thank you for posting this and for the replies - I struggled to deal with any information when first diagnosed and refused to speak to my CNS or discuss anything about cancer with my surgical team - I was made to feel that this was unusual but clearly not as much as they suggested to me - I still haven’t gone into great detail though I have picked stuff up as I’ve gone along and knew my stage before starting chemo - I have never asked nor been given a prognosis though reading online I’ve picked up some stats for my subtype of OC - my onc accepted I didn’t want much information though said that I might as I went along so the opportunity there to discuss anything further if I want to ( though must admit she’s very non commital when I do ask things!) - I think it only makes sense to ask the things you want to hear the answers to -if you are going to struggle with hearing a prognosis I don’t think you need to ask - I decided to put my affairs in order on diagnosis and then to just get on as if I’m going to live for some time but being prepared for that not to be case- go at your own pace and take someone with you x
Hi lyn. Like you I don’t want someone to put a time limit on me. I am just interested in the treatment options. I googled in the beginning and frightened myself enough. I don’t do this now. I don’t put my head in the sand, I know my cancer grade, and my Oncologist has given the statistics and the percentages. I know the odds are stacked against me, However, I joined this support group, and another in my own Country so that I could hear the positive outcomes. Yes you do hear all of the not so good stuff, but even those people have fought to the enth degree. I live for today. I don’t look forward and say I may not be here, Just don’t think about it. My son had a drawing done for me which is on the wall adjacent to my bed. I see it every morning when I wake up. It says "The Odds are there to be Beaten". My Oncologist has re-affirmed that some people do beat the odds, and there is nothing to say that I can’t be one of those. Focus on the treatment options. Don’t worry that you have not had an operation yet, a lot of women (including myself), need to go through chemotherapy first before things are stable enough to operate. I hope this helps. Therese
Thank you Therese for the wise advise. I also googled and it said I had a 17% chance of surviving 5 years, not a betting person but even I knew they were not good odds, my husband said "and who is to say, you are not going to be one of those 17%" Bless him!! I love your quote "the odds are there to be beaten" that is going to be my new motto!! Lyn x
Only ask what you can really stand to hear answered honestly
Write down what you want to ask in advance
Write down the answers
Ask yourself why you want to know. I mean, is it because you are worried, or want to find out how much of a grip they have on your particular case, or need to know what might happen next re treatment etc. That way you know more about your motivation.
It’s totally your choice but if you do want to know they should answer you properly and with respect.
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