How truthful should I be to oncologist

I’m sure I really know the answer but would like some advice how to handle my consultation with oncologist on thursday.
I started weekly taxol mid august for 18 weeks. Due to various hospital admissions with infections and now christmas/new year still have only had 14. Last one was 4 weeks ago on thursday. In that time off, my solid tumour has regrown and my swallowing is becoming difficult and painful. Last time when i had 3 weeks off and I could feel my swallowing getting worse, he was reluctant for me to continue with the taxol as he said it wasn’t working. This is my last chemo option so by not having it I have nothing left and will be dead in under 3 months so want these last 4 to buy time and hope that he will relent and let me have vineralbine again.
However, saw last week on GP’s computer screen that I now have bone marrow infiltration - I suspected this as my iron levels keep dropping and my wbc counts are slow to come back. I’m angry as have always asked for the onc to be honest with me and withholding this info is important because as far as I can see this shortens my life even more.
If I don’t tell him about my swallowing then i think he may suggest having a break for a few more weeks which by then I’ll be back to pureed food. My breathing is still Ok and skin mets have not returned and lump in armpit has only grown a little so it’s my swallowing that is the issue.
So scared now as really feel I’m approaching the end so fast now and yet apart from my swallowing and my spine constantly clicking and causing intermittent excruticiating nerve pain, I’m quite ‘well’. I can keep going all day and have steroid induced energy but can’t use this energy to any useful activity.
Any ideas how I should approach thursday as I feel the onc wants to finish me off quickly so need to be strong. It’s my birthday at end of month and want to go out for nice meal etc and go away for the weekend and feel this will be impossible without further chemo
thanks
Kate

Hi Kate
I would be very cross that information about YOU had been withheld by the very people you are putting your trust in. I guess part of you feels you should tell them about the swallowing… and part of you doesn’t.
Why not put some scenarios to them - say you are weighing up options etc
‘what would be the situation if …’ etc and then make a quick decision as to what to tell ! ?
Sorry i sound very niaive dont I - just trying to help!

Hi Kate,
it is my birthday 10th Jan, due scan tomorrow will discuss results with my onc Friday so we are in a similar boat. My onc knows I want the truth and up to now I have always had it. With my omental infiltration there isn’t much I can find out on the internet, he has warned me it is not good but then I have out lived all his predictions re how much longer do I have, reading your threads I think maybe you have out foxed them as well. All I can say is carry on as you have been doing tell him the extra time each chemo buys you is so valuable to your family that no price can be put on it.
Have a good birthday and like you I get the very strong impression that for me this one will be the last BUT maybe we will both make it to the next one. I truly hope so.
Love Debsxxx

Kate,

There is no easy answer. You have to do what is right for you and yours, even if it means withholding information. Do whatever you think will buy you more time with your family. Obviously the quality of that time is as important.
Think you should mention the bone marrow though. If you dont it will niggle you and you dont need that. Tell him how you feel and hopefully he will learn something from it.

I cannot really help or advise you but would encourage you to plan for your birthday and maybe have another sherry.

Sorry, am not much help but thoughts are with you.

Julie xx

Hi Kate, sorry to sound so ignorant, but do you think the onc will not want to continue with chemo because he will have decided it has failed you, or is it because he thinks it might kill you? If he thinks it has failed you, it clearly hasn’t failed completely because some things have been held back and who knows how quickly things would grow if you weren’t on it. If he thinks it will kill you, then can’t you tell him that no chemo would probably also see you off?

I suspect that the doctors may be struggling with a real ethical issue here - the whole kill or cure thing. But they are not allowing for how valuable any extra time is and the fact that you are usually able to cope with the chemo side effects pretty well.

There is a risk that if you don’t tell him about the swallowing problem then he will want to give you a chemo break anyway so I think I would be very tempted not to tell him, but to ask the “what if” question as Jenny has suggested.

One other thing - has he said a definite no to the vinolrebine? Is the bone marrow involvement likely to make this more of a long shot now? Would the swallowing thing make him more likely to say yes to vinolrebine?

Sorry, so many questions and not a lot of answers. Maybe you could work out one question that you really want the answer to. I think the question I would be asking, if I was where you are now, would be somethin like: “Laying aside protocols and politics and any other issues that are not to do with my own individual circumstances, and bearing in mind that I am determined to go on living for as long as possible, and recognising that I am an intelligent woman who knows that each treatment carries risk and might actually end up causing more harm than good, what do you think I can do in order to give me the opportunity to grab as many days, weeks or months that I can with my husband and family and what can you do to support me in this?”

It’s a long question, I know, but basically I think you might need to establish that you know the risks, you know that the return may be small, but basically you would be prepared to go through fire if needed in order to have the chance of even just another day and does he have the right to deny you that choice?

Will be thinking of you on Thursday.

Love

Deirdre

Kate, A friend of mine was offered oral cyclophosphamide when she was too poorly to tolerate gemcitabine (I think it was this one). She was told she could have it as long as it worked and in the mean time, her body could perhaps recover some strength. So it may be worth asking your onc about this. My friend was told that though it is an old chemo, they are still finding out more about its properties and usefulness. My friend, unfortunately has now died, but she was very happy with the plan at the time.

Could you have a platelet transfer, G-CSF jabs or Erythropoietin (or EPO) (all nicked from Cancer Research UK) for your blood.

I would be honest about birthdays etc. Play every emotional card in your deck. You are still doing so well.

Jenny (birthday this Friday. Scan a week Monday - Happeee Birrthdaaaey!!)
xxx

Hi Kate,

Was debating how I could phrase my reply to your post, saw Deirdre’s with the question so eloquently worded - I personally think it’s spot on and covers the issues that are most important to you. I would copy the question and produce it.

Wishing you all the best, an outcome that is a success for your difficult situation and a very happy birthday.

Liz x

PS Deirdre - I’ll know where to come if I ever need anything like that. Your head and memory go to mush when you’re in an appointment don’t they ? Everything occurs to you as soon as you walk out the door !!

Hi Kate
Personally I would want the Onc to be honest with me - and if I thought he wasn’t I would simply ask him about the results you had seen and why he had not discussed them with me. You deserve honesty from him.

It may be a long shot but there is a therapy that is called photodynamic therapy - it is a bit new but is often used for throat cancers etc - they normally only use it on primary cancers not secondaries, it doesn’t mean you would have to stop chemo, the treatment involves an injection of light sensitive stuff and then they subject the area to intense light. this is why currently it is only used in areas they can get a light too (throat, prostrate etc). Even if it only helps the one that is affecting your swallowing it would be something. Any way as I said it is a long shot, as mine is triple neg with regional spread it is inoperable and so I had been trawling the internet in case my chemo and radio has not had the desired affect which is how I came across it.

I would be interested to know what he says if you ask him about PDT I was waiting to discuss it with my onc when I get my scan results. I sometimes think we often find out more about the new stuff than they do - think they often get wrapped up in their own specialised area. Anyway there are a number of bits on the internet if you want to look into it. Wasn’t sure whether to mention it or not as it is a very long shot. But we all deserve all the information we can get so at least we can make informed choices so I hope it does not cause any offence.

Please take care and I wish many more birthdays for you
Love
Helen x

Hi Kate,

My wife, with the exception of the throat problems seems to be following you very closely.

She has severe infiltration to her spine, liver, pelvis region. I can feel for you with the nerve pain as my wife gets this too, suddenly and without warning, if she is walking at the time it happens then it can make her fall over with the pain. The oncologist has actually given her a drug normally used to control epilepsy ( it stops the brain sending out electrical signals ) however it is too early to see if this works. We have to pick up her latest scans today and take them to the Onc, hopefully she will be able to have some rads to the worst area´s.

As you know she was on Avastin and Taxol, but after the blood in urine problem of a few days ago, which shocked the Onc by just how much blood there was, I am sure Avastin will no longer be given, I am not sure the Taxol is working either. Like you she gets very aneamic ( Spelling ) and her resistance to infections ( wbc ? ) is nil after each treatment, so she ends up in emergeny after each treatment.

The above does not really help you except to say I would tell your Onc the truth, if he wants to take you off Taxol then insist it carries on, it is your life and it is not an expensive drug after all.

XX
Terry

Hi Kate…I only wondered if the onc thinks more chemo might be the more risky option with bone marrow involvement? Lots of people (not you I’m sure, nor most of us here) tend to assume bone mets alone aren’t life threatening but they are because they do often lead to bone marrow involvement making chemo a more risky option. I hope you and the onc can be open with one another and you can be assured you are having the best options made available to you. Good Luck and Best Wishes. PS…I was told on diagnosis that it was highly likely I have marrow involvement too.

Hi Kate

Sorry dont really know wot to put or advise, but just wanted u to know am thinking bout you. Such a hard one really. I would, I think have to say something to onc about the bone marrow and why he didnt tell u, as for further treatment, if you want it, I think you should be allowed to have it. It is, after all, your life, and as we know, we all want to stay around as long as we can for the sake of our kids.

Take care Kate, hope it goes OK and thinking bout u.
Love
Dawn
xxx

Hi Kate, sorry that I cannot offer any advice but I would like to say to you good luck at your appointment and much love, hope both you and debs have a lovely birthday take care junieliz

Hi Kate

Been thinking about you and your post a lot…don’t know what to suggest, but feel your onc should have been more honest with you about the bone marrow…you need to know exactly where you stand. And so does he!..hope he’s open to the vineralbine idea. It’s your life and you deserve all the shots, however long.

I hope it goes well on Thursday with some kind of positive outcome…

X

S

Hi Kate, like many others I cannot offer any firm advice on something like this other than you can only do what you believe is right for you, as that is all any of us have really, and indeed all that actually matters.

Thinking of you.
Nikki

Hi Kate - again cant offer spacific advice, all you can do is ask, can you get a second opinion? Im sure when you see him you’ll know what to say, lots of luck for tomorow let us know how you get on

Sue x

Hi Kate,

best of luck for your appointment. I hope he’ll give you the vinalrebine.

love Peggy x

Hi Kate
I also agree with Deirdre’s advice - it’s a good question. I am always pushing oncs. for realistic outcomes - I think they should provide them as a matter of course but they do not seem too.
Just explain to Onc. exactly how you feel - repeat what you said in your thread. You come across as intelligent and the Onc. will no doubt respond to that - in that he will realise you have carefully thought through the options and that you think you know what is best for you. Sometimes that helps them make their decisions - it has worked for me.
Be honest with them and they will be honest back. Do tell it as it is…
You sound so brave and strong and I know you have 3 children about the ages of my 3 children…am thinking about you
Ena x

Gosh Kate,
I think your intelligence and knowledge shine through. I think it’s important you bring up the bone marrow infiltration with your oncologist and be honest about how you feel about having information not being disclosed to you. You have to fight for what you feel is best for you and your family. It’s so hard as there are no easy answers and I don’t really know what to say but just that I’m rooting for you and I understand that you want the very best chances to have as much time as you possibly can and you deserve no less. My gut feeling would be to be comploetely honest with the oncologist and definitely question why he didn’t tell you things when you specifically asked him to be honest.

Thinking of you tomorrow. You are amazing!

Anne xx

Hi
I have read ur threads and am amazaed at what an inspiration u are to myself and others with what u have coped with and still dealing with.
I think the same as the others u have to do what u feel best - me personally want the honest answers and the best for my condition and i believe that is the same for u.
makesure u write down the questions and options u want answering before u go in as if u are anything like me i forget and remember when i come out.
i really hope u can get the chemo u need and the answers to y they have kept information and results from u.

take care
Big hugs

Lisa x

Kate - just wanted to say thinking of you today,
Cathyx