So here we go again, I have walked out of my oncologist appointment feeling utterly frustrated ... A year on and I have still not sussed how to maximise that 5/10mn four weekly golden encounter... Everytime I rehearse in my head what I want out of it , the questions I have , the tone I want to use , the persona I want to present, the options I want to discuss ... And pretty much Everytime I fail miserably... Now to my defence I have to prep a range of scenario as I never know who I will see ( and how much of my file they did have managed to digest in the 3mn prior to seeing me) but I do always factor that in when I rehearse my performance and yet ,more often than not, I just walk out feeling a mixture of worried / angry /frustrated/ full of pre-appointment unanswered questions or newly created ones ! Last week was no different :I had worked out that I was likely to get THE consultant ( since last time I saw her was in Feb when I was in the Honky Dory " stable" world and having gone full rotation since then, I was due a celestial visit), I also knew she would have nothing of significance to say since I am only on cycle 2 if my second line of treatment but despite this I somehow had got myself in a place of expectations ... Now what I was expecting I am not sure to be truthful but what I got wasn't it.. Having covered the expected " we have to wait until next PET in September to see results" she moved on to " How are you feeling? "... Now off course ( this is not my first rodeo!) I knew she did not mean to ask how I was feeling emotionally ( no time for such nonsense!), this was merely a code to check for side effects but I ( probably subconsciously intentionally if that makes sense) chose to take the question in its litteral sense... I answered that actually the last few weeks had been a tricky journey , that the 2 steps process that gave me a unexpected and serious disease progression followed shortly by an offer of the clinical trial ( to include PIK checks on mutations) only to be taken away 2 weeks later had knocked me a bit and left me vulnerable. I explained that I had bounced back but still felt I was grieving the end of a treatment and that , by taking away a more targeted action they had just offered , they had left me feeling like I was back on the default settings protocol ( I likened my position to the one of a battery chicken which, with hindsight , probably did nothing to mellow my interlocutor).I added that my understanding was that my cancer was behaving aggressively and unexpectedly and that the door for a more targeted approach had been slightly ajar only to be slammed right back. This sounded like the second line of treatment was therefore more of a " that's all we have so nothing to lose " rather than a " this should do it for a bit longer" . She just listened to me and nodded . I felt like saying to her " Don't nod, I am trying to be clever here by sounding all grown up but this is your queue for you to say " early days, this response is not that unusual actually, etc..."... She didn't , she nodded in acceptance and asked me if I had " help"... I looked back at her a bit puzzled and asked her to clarify what she meant , only to realised she meant counseling... I felt so patronised! I felt like I had crossed the untold (but known by all) secret lines like a naughty child... I really felt she did not care what I felt and wanted me out of the room. Because of that, I walked away not knowing what to read into her Churchill dog nodding: Was it an acknowledgement that I was pretty much spot on but their NHS hands were tied up by available ( or in this case unavailable) protocol or was it more simply a way to try to get me to stop with the emotion diarrhea she was obviously not comfortable with...I was none the wiser and since I won't get to see her for another 3 months I will just have to wait for PET results end of September... I walked out feeling so cross with myself because I was leaving with more questions than answers and then realised that the day I walk out of one of those appointments with certainties it will probably be bad news so that uncertainty was probably a good place for now....
Oups I did it again: So here we go... - SHARE Metastatic ...
Oups I did it again
When people push for national health care in the US it scares the hell out of me for the reasons you describe. You are very articulate, and I assume you have written out the questions and comments you want answered. All I can think of is to press them if you are not getting what you need out of the visit. Next time tell her/him “I see you are nodding, but can you tell me what your thoughts are about what I’ve said?” Don’t let them get away with being evasive or noncommittal. Take notes as they speak. If they can’t give you answers, who can? “Is there someone else on the clinical ladder who can address my questions?” Yes they have only a few minutes per visit, but that’s wrong and a system failure. Keep your foot politely but firmly in the door until you are satisfied that you got the answers to your questions. And as far as the doctor’s meek suggestion you get “help,” it may seem like a diversion, but I’d be a simpering mess without therapy. Not for everybody, but if you haven’t tried it, it’s worth a try. We need holistic care, mind, body and spirit. We have to squeeze whatever system we’re stuck in to get it. I’m so sorry for what you’re going thru. Let us know how you’re doing. My scans in 2 weeks. Ugh. 😰
Good luck with the scan please keep us posted... I had one of those " foot in the door" moment a few months ago ( the one after my progression scan results) where I hickjacked a registrar for 30mn and bombarded him with THE difficult questions, I did walk out feeling " complete" but it was hard work .I had to put on the poker face, be direct and cold to get a straight forward answer... It felt like I had to pretend not to be the patient to finally get the info I needed. And yes I totally agree that therapy is an amazing tool, having suffered from 3 post natal depression I have experienced both how destructive it can be when bottled in and how much can be done through counseling... However at the moment I have drawn myself a War plan that keeps myself in a fairly positive / fighting space ( with the odd rant on this forum) but reassess situation regularly! My frustration with the consultant mentioning it was more that I felt she was waving it like a fix it all tool and not acknowledging she could also help... Thanks for taking the time to answer, this forum is my therapy for now and doing a damn good job!
I’m sorry you ended up feeling worse after your visit than before. I don’t think it really does any good to rehearse what you think will happen since everyone is different and guessing what approach they will take is futile. Instead go in with 4 or 5 well edited questions...run them by us if you wish! Whatever they ask, just say “I have a list of questions I need answered. The first one is.....”. I might have asked, “ if I’m understanding the situation, you think my cancer is more aggressive than you thought. If that is why I was not eligible for the targeted approach, are there any other approaches that might work, or why do you think staying on my current therapy is best.” It’s true that many doctors are not good with emotions, so if that’s what you have discovered, asking questions in a more academic manner will probably get you more answers. If you have a good friend who knows your situation and isn’t afraid to stand up to a doc, take them with you if that would help. Take advantage of anything that works!
I’m sorry that doctors are that way. They need more training in the emotional side of things! I’m lucky in that I get 1/2 hour appointments at the very least with my oncologist and he gives hugs too!
And last, but not least, don’t be afraid to ask for supportive help, a psychologist or social worker. This disease is a shock and it takes whatever we need to get through it. I haven’t needed one for this but I wouldn’t be still married if I hadn’t seen a psychologist in the past!
Hugs, Elaine
Thanks Elaine... I would have probably written a similar advice if I had seen my blog written by someone else 😂.. Funny how we loose common sense and it is for us ... I have done my own mini therapy I think I am basically a) grieving the wonderful surgeon I had at my local hospital for a couple of months ( post BC , pre- MBC diagnosis, and b) still coming to term with not being in charge of my life ! Those poor Drs at my hospital have become my punching ball to voice my frustration on the situation... Most often than not the fight is off the hospital ring and in this forum ( that's probably because subconsciously I realise I am being unfair and they are only a tiny part of the issue!). I am fairly " De facto" when I speak to them ( only cried twice and both were with lovely Drs so I suspect this proves their case that being an " ice queen " keeps the appointment moving 😉...) and invite level headed conversation with what I think is the right level of personal research and understanding... But as you can tell this rarely works out!
My thought. Write them a note or email now and get your feelings on record. I had a bad encounter with a thyroid specialist a month or so ago and they had a social worker call me. She said...you are not the first to complain about his manner and you can look for someone who us a better fit. There are some doctors who do not know how to converse with patients and unless you call them out, it will not change. I saw another thyroid doctor and it was night and day!! Much better fit.
Thanks. I think ,as I just covered in my earlier response, that I really give them a hard time because they can't give me what I want : time and certainty ( I have given up on the cure a little while ago)...I am just being a spoiled ( slightly schyzophrenic ) child really who wants to be treated like an adult but also seek the reassurance that everything will be OK! We all have our cross to bear!🙄
Thanks Sandra
So sorry and annoyed for you...
I’m a bit like this though...think of things to ask then don’t...almost like I’m there to please the oncologist rather than the other way round
You may have read my post about when my denosumab was injected wrongly by a nurse...I had a telephone consultation the day after this occurred and didn’t say anything
Then after I thought about it...I thought sod this I’m going to complain so I texted my oncologist about it and she was cross and made enquiries
I’m ridiculous in the presence of hospital doctors...as if I’m sitting on a hot seat and need to get away as quickly as possible ...no idea why as I was a healthcare professional myself...it’s almost as if I feel I’m being a nuisance if you get what I mean
I’m getting better but should be much more assertive...I tell everyone on here to be but when it comes down to me it’s a different scenario
Barb xx
I get that too.. I am kind of trying to be the cool , informed , friendly and rationale patient but end up sounding either like a pushover , an aggressive so and so or an emotional wreck!
Not long now before the wedding ... Wishing you a sunny one! ( If this fails I will share this useful French saying " marriage pluvieux, marriage heureux" ( rainy wedding, happy marriage).. Looking forward to seeing the picture
Hi Marieleb!
I know how u feel! However right now I’m sticking it out with my Center only because of convenience. About 10 minutes away. I’m in OH so the Cleveland Clinic is about 90 minutes away. I got a second opinion there and really felt the doctor I talked with was knowledgeable in her field. And she seemed empathetic to treatment fatigue...I typically get told that “I never thought you’d be a quitter” when I mention needing a break. (3 years of IV treatment) Im stable now which is the only reason I didn’t switch...but I will down the road when things get crazy again! Hopefully not for a few years! But feeling like you’re in good hands is important! This disease is stressful and our doctors need to make us feel that they have a firm grasp on our case and MBC as a whole! 😀💕
I’ve heard great things about the Cleveland Clinic. No one should shame you for being exhausted. That really upsets me
Its very difficult when youre not seeing the same person. However on the flip side, Ive been getting the same consultant each time but she tells me naff all so wuery would I benefit from seeing someone else. Ive just posted about some crucial info she didnt give me and I had to find out in a cc'd letter. Maybe she's like your Onc and is afraid to deal with the consequences of bad news - or maybe we're back to the time constraints - either way its crap service.
Maybe you could sit down and think about the 3 or 4 most important things you want to know. Email it across and position it that its in an endeavour to save time but if yhe Onc could consider and ne ready to discuss at your next meeting. I hope you get good results at your next scan. Best wishes xx
Thanks Sandra. I’m not nervous yet. Just resigned to being lit up like a Christmas tree from all the crap I drink, get by IV and get injected with. It will be a long day.
It really is stressful trying to deal with a pessimistic situation with an oncologist who seems to have "seen it all" and who holds out very little sunshine . I have to ask to see my
CT scan (he doesn't offer such enlightenments unprompted)---even though it offered the
good news of tumor shrinkage. He didn't offer the percentage of shrinkage (I had to guess, visually----despite I have no e xperience with reading such pictures). He seems
remarkably quiet and nonchalant. If I have no questions, his conversation dries up. He
has maybe a couple of things to say ---that there is good improvement in my markers,
and hence my limited time on letrozole is working well (but we both know this is temporary). There are no grounds to talk, no anecdotes , no touch of the personal
not even comments on the weather. I feel without my being in desperate need, I bore him.' If he just had a funny pet story, anything, to make him more human, less the
scientist in a lab!! UG! I saw him for five years, before my reccurence,, and all the time he
was annoyed I would not take letrozole. I really don't see that it has made any difference.
I would suggest changing to a different oncologist for both of your sakes. He might be feeling that since you wouldn’t take his advice in the past, he doesn’t trust you enough to be warm and friendly. He should get past that but doctors are human too and maybe he just can’t. Starting over with someone who doesn’t have a history with you might be helpful to you both. I’m not blaming you for your decision not to take Letrozol, I don’t know your history, but maybe he does. It would just be better to go to someone else in the same practice. Elaine
Dear Red I guess after complaining to my oncologist's nurse and intermediary
I finally got action,as he scheduled a CT and blood work for me for next week and will
see me a couple of days afterwards to digest the results.
I do take Letrezole now as of stage IV diagnosis in JanFeb of this year, but enjoyed
not having to take it for 4 and a half years. Refused the Ibrance as wanted to keep
things (like side effects) simple So far, no side effects from Letrozole, except stiffness
and fatique. I am getting rid of my blood pressure meds (which cause hair loss and
fatigue also) becuase I've found a supplement which works as well.
Meanwhile am searching alternative supplements to add to my arsenalz;
taking Carnivora Graviola laetril (a little in apricot pits), fermented tumeric,
turkey tail mushroom capsules and just starting fenbendazole.
Cant trust drug companies, as their motive is profit(chronic control) not cure, imho,
Sandra, if you can make it through all that to get married, you have got the relationship that will last forever! Congratulations on your 33rd!
Greetings: Sister and, yesssssss Warrior. I am so sorry you were upset by your last doctors appointment. I/we are all imperfect, and that includes your doctor(s). I believe doctors are afraid to be emotionally invested in their patients. These doctors are in a field where they have to give, and deal with what can be difficult news to their patients, and their patients loved ones. Remember these doctors lose some patients, as well as has help many more. God knows we don't want to talk doctors off of ledges because they can't handle the loss of some of their patients, but I do think these doctors need to have balance in how they care for, and interact with their patients. Whether they really care for their patients, or not, their patients need to feel cared for. I don't care if these type of doctors take acting lessons. We need to feel we are being treated well by a humane, experienced well trained doctor. Again we are all imperfect. I do pray that your next doctors appointment will have you leaving happier than you came, and with everything you need. Amen GOD bless you sister, and yessssssss Warrior. Keep up the fight, Don't give up or give in. XoXoXoXoXoX
My first time outside my apt. in Brooklyn, NY since March 16th. (long, as usual)
tumor marker question
Mom has stage 4 mbc. looking for hope. 
