I've just had a call from the oncologists secretary asking me to go into the unit on Monday to see the oncologist rather than having a telephone conversation. I had a scan a couple of weeks ago but have been feeling better on the xeloda so was hoping for good news. If he wants to see me all I can think is that it isn't. My bloods were all back in normal range except my alkaline phosphoratase, which had doubled. (Apologies for spelling!)
I think it's going to be a very long weekend waiting for Monday. I haven't had a good scan result since last spring. I'm usually very positive but starting to feel a little frayed.
But I have been out on my bike again which I really enjoyed and saw some neighbours who were also out and had a chat which made things seem more normal. Thanks for all the encouragement to get out again 😊
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Julie2233
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Thinking of you Julie, hope the news is better than you fear. I certainly think a chat with someone outside the home makes me feel as if I can keep going, otherwise I feel very low. Keep busy this weekend if possible. Fay
Yes it was lovely to see some neighbours, one of whom as an environmental health officer who had been involved in covid enforcement and was saying that this area was relatively clear and people had been observing the regs quite well, which was good to hear.
Hoping for the best for you for Monday ... try and enjoy the great outdoors this weekend ! x 🚵♀️ 📸
Hi Julie,
If you are feeling better on xeloda then that bodes well. Maybe your oncologist just prefers seeing patients in person and does not feel comfortable with sharing news (good or bad) over the phone.
I hope you are able to get through the weekend well. It could be good news.
Thanks Sandra you are completely right, whatever it is I’ve already got it.
My consultant isn’t like that 😊 he’s actually quite shy and seems to only have face to face meetings when he absolutely has to, he leaves his juniors to deliver good news
I do wish theyd think about these things, youre stuck worrying now all weekend and it could be theyre just starting to get things back to some semblence of normality. Best thing you could do getting out and about (safely of course), take your mind off things a bit. best wishes for Monday x
Oh I know this place! Last weekend was my scanxiety weekend. I do wish doctors would try a little harder to put themselves in our shoes when it comes to giving results and such. As Sandra suggested, once I actually had my CT on Monday the anxiety lifted...."whatever...it's on the films now, what's done is done."
I don't know how you feel about actually looking at your scans. I saw mine for the first time on Wednesday and found it fascinating, and very helpful. I had a lot of liver progression back in December and I think if I'd seen the scans then, and seen how much healthy liver was still there, I wouldn't have been as worried all these months.
And what's important, whatever the results, is how you are feeling today, this weekend. Try to enjoy that. I envy you cycling. I live on top of a formidable hill, could have fun getting down it but I'd have to walk the bike back up!
I would love to see my scans but don’t have access to them. I always ask fora copy of the reports. I usually have a three week wait for results and it’s so horrible. But you are right, whatever is there is there already.
I was pleased with myself because I stayed on the bike for all the hills 😊
I didn't think I had access to my scans either, other than the report. But when I saw my oncologist in February I asked if she could show me the scans on her computer screen and she did. It didn't make much sense, as I couldn't tell you if she was showing me images of my breast or collarbone! But she zoomed in and explained things. Maybe you can ask your oncologist next time you have an appointment. I have also been given the opportunity to sign up to a patient portal to receive my hospital results. So next time I'm at the hospital I'll be able to sign up, as I have to do it in person during an appointment. Do you have access to a patient portal?
Thanks, that really interesting. Usually the consultants don’t have screens in the consultation rooms but there was one at my last appointment and he wizzed through my scan as the report wasn’t ready but didn’t let me see it and said he needed the report. I’ve never heard of a patient portal in my areA but I will ask. I don’t think my consultant would take the time to go through the scan with me. His aim seems to get me out of the door as quickly as possible and asking for a copy of the report is always greeted witH reluctance. Luckily I know that I am legally entitled to it.
I will definitely ask if there is a patient portal.
You're welcome. You must feel rushed when you see your oncologist. I wouldn't like to be rushed. I know a lot of ladies from America already have access to a patient portal where their results are posted. It's more of a new thing for us over here. Hopefully it's available in your area too.
It is horrible. Most of my consultations are less than 3 minutes - I started timing them. Which is why I try to write everything down that I need to ask. At a couple of appointments I asked for a copy of the scan report as I sat down. He had to get it from a printer in another room and left the door open for me to leave when he came back. 😊 his staff all say that he is just shy and finds talking to patients difficult but he is very astute to work with and they all say that he is the most knowledgeable oncologist they have ever worked with and he’s prepared to think outside the box. So I stick with him.
It would be great if there was a portal I could access. 😊
Three minutes?! That's it? Wow! I hardly know what to say to that. That's not even long enough for me to have some small talk with my oncologist before we get down to business. Well, I suppose if he is knowledgeable and gets on with the job that's great. But I would prefer to have more time for questions and anything else that might come up.
That is why this forum is so great, it always points me in the right direction so I can ask the right questions. Without this forum I would be completely lost. I'm afraid that I'm now of those awkward patients who just don't take what I'm told anymore.
I find the information on this forum invaluable too. It is such a supportive place to come. I wouldn't say you are an awkward patient. You are invested in your health and want answers. That's how I feel too. When I was diagnosed I did not go home and start planning my death. I wanted to do all I could to live.
Yep that me too 😊 i'm a lot more interest in living than dying. I don't think my oncologist is used to being challenged and he obviously finds it stressful. He has a nervous twitch and his eye lids flutter, the more stressed the faster the flutter. I've learnt that I need to take my questions on paper so he has got the paper to concentrate on, it keeps him calmer 😊
Everyone who works with him say that he is a lovely man, just very reserved. I always ask the staff what they think of the different doctors, it's amazing what they let slip in general chat, but I think it's always a good indication if the staff speak highly of a doctor.
Hi Julie
Of course you are going to worry it’s only natural.
Listen to your body and enjoy the outdoors on your bike.
Monday will be here before you know it. And on Tuesday it will have gone.
How you are feeling physically is important so enjoy the things you love and try not to let your emotions get in the way. Do you do any meditation techniques? I find them calming.
Don't worry. Whatever the results of the visit, we have small progressions and regressions. Since you are feeling so well, especially able to bike ride, you will be alright.
Wishing you good news on Monday. Your doctor might want to change your treatment plan so try not to worry. We all worry because we find ourselves in the hands of doctors. For many of us we were very capable and self sufficient women in our lives - so having to let others take over our care is not easy. That is likely why we worry so much. If you can meditate try to tell yourself you are healing. Keep repeating that and keep believing it no matter what anyone tells you. I have read that the brain believes everything you tell it and it helps you create a positive outcome. Hugs Marlene
Praying for some good news on Monday...I know it’s hard not to think the worst but even something as simple as a med change he might want to discuss in person.
Holding good thoughts for you! And either way with the news, do convey to the doctor that the stress of waiting the weekend with a change in meeting was stressful. My thought...move the phone appt to Fri, say whatever and ask you to come in Monday. I have been very frank with my doctors through the years about how they make me feel! I also have refused to see the nurse practitioner, who I did not like. I either just get shots from the nursing team, or see the doctor. In 8 years, I have seen 7 diff oncologists or PAs (the latter when I was cancer free, or so we thought!) at Sloan Kettering. So I have learned to be very up front on what *I* need from them!
Unfortunately the system here does not allow for that. It’s not possible to say when you want appointments , you can sometimes change the time but not the day especially at short notice. And you can’t ask to speak to the oncologist or even his PA. you can send a question via the receptionist or sometimes a friendly nurse but the answer is usually that you need to raise that during the allocated consultation time.
I’m on my third oncologist and I refuse to see some of the doctors in the team because I don’t think they are competent. We have a right to choose who treats us and these days I don’t get fobbed off 😊
The best advice I was ever given regarding scan anxiety . . . waiting for scan news and what mot is that whatever the report is - You have already been living with It! And it sounds like you are living well.
I saw a post from a friend on Facebook this morning. This should be the mantra for all of us fighting MBC. Especially when we are filled with “scanxiety.”
Fear does not stop death.
It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.
I read that post this morning and immediately thought of my MBC sisters and myself and thought, “Amen!”
God bless you you, Julie! You are in my heart and prayers!
Thank you that is so lovely and it’s usually my mantra because it is so true.
Being able to share my worry with everyone on this board and know you all understand has helped lift it so much. After I got the call yesterday morning I had an hour just feeling defeated.
After constant progression since last spring I was really hoping for good news and a bit of stability, but posting on here really helped to pull myself back together.
I was already feeling off kilter as I heard last week that someone I know from the Local MBC support group has gone into the local hospice for end of life care. She’s younger than me and we have a similar spread of the cancer. It just isn’t fair sometimes.
I think it's very unfair for staff to call on a Friday! They did that to me once. Worrisome and annoying. I missed the call but finally figured out it was just a reminder of an appt.
I just wish the secretary could have just said why they were changing the nature of the appointment. She could have said that it’s nothing to worry about, or the oncologist wants to discuss the scan /treatment, then at least I’d have some warning.
Yes, she should have. I think they sometimes don't realize how tenuous we feel and the most innocuous comment can be upsetting. Sending you peace and comfort.
Julie! I'm so sorry for the late response, but I have been eager to see how you've been making out with the biking! I'm glad it's going well and I'm so sorry about the pre-readout stress, I truly hate that!!
Let me mention two things.
First, and I acknowledge this is almost certainly insignificant, and I intend to give things some time before really sharing, but I had labs last week, after taking up some serious exercise AND lots of D3/K2, and my alkaline phosphatase (sp?) decreased 15% in two weeks (it had never decreased over five years) and my CEA tumor marker decreased 11% (has decreased once in five years). On the flipside, my main tumor marker -- CA27-19 -- increased 15%. So it's a mixed bag, but I've conjured up a scenario where the exercise and supplements are making a difference (chalk this up to the third prong in my 3-pronged strategy...which is to believe, no matter what, that it will help!! ).
Let me add that when I say "exercise" I mean like really pushing. My bike rides are long and hard (oops?)...I don't stop until I have at least 45 minutes in "cardio" range and at least 15 minutes in "peak", according to my fitbit. I'll add a bit of running and/or like jumping jacks (surprisingly effective) to get to this point. And I also swim (outdoors) about 30 minutes in the afternoon; my fitbit isn't waterproof so I don't know what this adds but I feel like the natural sunlight / vitamin D is also good plus I've always felt, intuitively (no science I can find) that the sunshine baking my bones helps. PLUS I now take lots of the D3/K2, which I recently came to appreciate after learning about them on this site...
Also, let me mention this: If your results show only modest progression - as mine did last month - you might want to consider the option to delay a change in treatment. This is a tricky situation...proceed with caution!! But if you want to do this, maybe say to your doc what I've said to mine, which is "I'm willing to assume some risk here...I'm doing x,y, and z and I'd like to give these things a chance to work". Slim-to-none they'll buy into it, but I did find/latch onto an onc who would join hands with me and jump off the proverbial cliff.
I'll be thinking of you between now and tomorrow...I can't tell you how much I hate the waiting part!! I spend about 11% of my time on Earth waiting for lab results and another 2% waiting for scan results!! To me, this is inhumane, but even my persistent feedback to my providers doesn't convince them to speed things up.
And, if things don't come out the way we all hope they do for you tomorrow, stay strong. We're with you, waiting for the next treatments - they come out all the time! - to beat back this beast!
I am hoping you receive good news. I agree sometimes they just want to meet with you in person to deliver the news. I have had that happen. All the best!
Thanks Marlene 😊 I’m fine. As expected it was bad news the xeloda hadn’t worked and I’d had progression. As this is the 3rd drug that hasn’t worked I’ve had a liver biopsy and am now waiting for the results.
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