Hi ,
I went to see Onc Reg because of a problem with my arm and while I was there she asked me if I wanted to know results of MRI scan that I had a couple of days earlier.I said no,because I just wanted to get my arm sorted that day.As I was leaving she smiled and said it was good news about my scan anyway, which I took to mean that my liver was all clear.When I went for Chemo last Thursday she said I do have a tumour on my liver but the’ good news’ is that it has shrunk.I really wasn’t expecting this and I am very angry at her choice of words.She shouldn’t have got my hopes up like that! I have cancer in breast,lymph glands under arm/neck.
My Onc told me I will be on Herc indefinitely but I don’t know what will be happening after my last Chemo has finished.She also said there is nothing they can do for my breast/lymph glands but maybe have rads on neck as they don’t do surgery there.Has anyone else not had surgery after being diagnosed with secondaries?
I’m very confused,scared and angry as they just seem very vague with the information.
Alli x
Hi Alli
I haven’t had surgery after being diagnosed with secondaries, I was told re mine in the liver, bones and nodes that surgery was not an option.
I know what you mean about your hopes being raised, every time I go for results they say its good news and all they mean is that the tumours are stable, which of course it good I just want to hear the same as you that the liver is clear… The good thing is the liver can work normally even with tumours
Try and keep positive I know its difficult but at least the tumour has shrunk which is brilliant news.
Beli
My wife too has not been offered any surgery, she has liver, lung and bone mets. Too many in the liver to do anything with and the lung one dissapeared after Xeloda.
The bone mets are not worrying the doctors, just the liver mets as her tumor markers had started to rise whilst on Femara, I am hoping that the FEC will work as the Taxoter/Xeloda only held it back and did not shrink anything.
Hi,
I have not had surgery either. The reason they do surgery is to get rid of any cancer in the breast before it has a chance to spread and once it has spread, there is no point in doing the surgery. I know quite a few women with secondaries who have not had surgery.
Jennyx
Hello I was diagnosed March 2007 with secondaries straight off. I havn’t had surgery was told surgery not an option. I have it in lungs,lymph nodes,liver. I found this really hard to deal with at the start because I wanted someone just to cut out the bad bits. Have had 6 fec which has shrunk some of the tumours and I am now on Zoladex and Arimdex
Caroline
Hi Girls,
How is everyone today?
Carolina - I answered on the other liver secondaries thread about swimming. I carried on swimming throughout chemo. The nurses said it wasn’t a good idea, but my onc said there was no problem so long as it was a fairly clean, well-maintained pool. I wore a swim hat, then when I got dry and left I felt everyone was wondering how I got my hair (wig) dry and coiffed so quickly! I still swim weekly now, with my portacath. I was scared the first time I went under water with it - thought I might take in water and drown!
Hi Allicat, I agree with the others. Once you have secondaries, it’s as though the ‘cat is out of the bag’ and it’s not worth removing the tumours. The treatments are aimed at killing off, or keeping stable, every little cancer cell wherever in your body. I know it seems weird, leaving it there. Logic says you want to get it out, so it can’t do any more damage. I’ve talked to my onc about my liver tumour, and there is a school of thought that if you operate you can somehow make the tumour spread more than if you leave it alone. I am sorry your onc was so insensitive about your scan result. It’s not really good enough is it? I guess if you haven’t been there, you can’t possibly imagine the kind of terror that grips you when you’re expecting results.
I’m glad you’ve found your way on here. Keep asking and talking all you like.
Tracy, I’m not surprised you were knackered! I’m still tired and I only had a short journey. It was great that you could come over and meet us in person.
Love to everyone.
Jacquie x
Oh, and Kay, I meant to ask how you’re doing so far this week? I can’t remember which days were scans and which were results - something was on friday, yes? Sorry to be so hopeless.
Big hug
Jacquie xx
Hi Jacquie
Blood tests (and port flush) tomorrow, and scans on Thursday - last Friday was my “stress” workshop! And I see the onc next Friday (9th) to get the results. AND I’ve got yet another appointment with the GP tomorrow to decide whether anything should be done about my bleeding. No wonder I don’t seem to have much time to spare for anything else, by the time I’ve been to work 4 days as well! Still, keeps me busy and out of mischief…
Love to all
Kay xx
Hi All
Meant to post last night but it got wiped out and then to much going on to recreate it, so now will do it before running off to work.
Jacquie- you really write quite eloquently I saw one of your posts on “our” old thread , i know what you mean about not really being sure how to live, I keep asking myself- am i doing this right, should I be chargeing around to work? Are there other things that I should be doing in this strange limbo?
Kay hope scan and appointments go well and port flush too! I am due tomorrow for blood test and port flush and zometa, insurance company is playing up and making mistakes about whether it is covered again…what a pain,
Caroline and Allicat - hope you are doing ok, pretty damn insensitive comments from your onc reg,you would think they could make the small leap of imagination to understand how things sound. I often feel like they see so many patients they treat us like numbers. I can understand that, but I think they need to try a bit harder,
So off to deal with the children at work, have to go in and mother them now to be sure they are doing their jobs.
love to all
cathy
Hi Kay
Hope you results are ok. Working as well you are marvellous. Last week I was hospitalized out, Monday Blood Test, Wednesday pick up Xeloda asked for a week off as my feet have been bad and hands, Friday Zometa and then this Monday went to see the cons about my eye watering all the time at least I don’t have to see anybody else for three weeks.
Cathy You are amazing as well to keep working, I think if you feel is keeps your mind off things that go with it but also try to take some time out for yourself.
Jacquie & Tracy hope you are both ok and Tracy I hope you feel more positive.
Love Beli x
hi have been to see my gp and have some stronger anti dep as i got even more depressed on my birthday and cried the whole day .
went for my bone strenghtner on wed and script for xeloda and my GGT has gone up 14 points , nurse said nothing to worry about but i cant help it . has this happened to anyone ?
dont want to sound miserable again but i cant get to grips with myself …
wish i lived nearer to meet more often xx
Hi Tracy
Tracy - hang in there - I am not going to say get a grip- just hang in there, yesterday I went for zometa and I was going to ask my counts but didn’t as In the end didnt want to hear it, I know they will tell me when it all gos pear shaped again. It really doesnt matter that its gone up 14 points, so the nurse is right in one sense, its where it gos from there. Wasnt wrighty saying rhat she had stabilised in the 40s? But its the awful uncertainty isnt it - what happnes next.
As to being depressed on your birthday - totally understand- its these “special” days that are hardest. My son is really disabled and every year I find his birthday a challenge as it really reminds you of time passing and his problems - this year I really dont know how I will cope (although it may be tempting fate to say I will be here for it).
I hope that your GP was understanding and has really thought about what to give you. Are there any cancer support centres out there? funnily I found the counselling a tiny bit helpful, but when I went for a day where someone advised me on hair and makeup etc, I felt much better and the effects were longer lasting, even now I get the odd compliment on new makeup ect and it really cheers me up!
it would be great if you lived closer - I find these meetings reallly helpful as well
love
Cathy
Hi all
Sorry to hear you are finding things so difficult, Tracy. As Cathy says, hang on in there and I too think “special” days are often really difficult. I did even before bc - something about how you are expected to just be happy on a particular day almost “to order” - but even more so now. Really hope the new anti-dep will help.
The continual trips to the hospital take up so much time and energy don’t they? I seem to have lived there or at the GPs recently. Have just started a new thread about “transvaginal scans” as I had my CT scan yesterday, and got home from work today to find an answerphone message saying the onc wants me to have one of these. Trying desperately to think that it isn’t because he has been alerted to something from the CT scan but because he had a letter from my GP about his concerns about me still bleeding 2 1/2 months after starting Megace. Not due to get my CT results until next Friday which suddenly seems a very long way away.
Also having problems with the insurance co who are now refusing to pay for my port to be flushed (cos it’s “maintenance”), and I really don’t want to have it taken out, only to be put back in when I need chemo again. And none of the district nurses are trained to flush it. Did “leave” it though with a very helpful district nurse who is going to find out what training she would have to do etc etc and has promised to get back to me next week about it.
Anyway, planning to have a good weekend provided the weather lets me! Hope you all have at least one indulgent thing planned.
Love Kay xx
Hi Kay,
Would just like to say; I got full instructions from my hospital on flushing my Hickman line (not the same as a port, I know) so that I could get the nurses at my GP to do it instead of going into hospital each time. They managed to do it - and were quite chuffed with themselves as a result. As I knew far more about the process than they did, I had to point out things like wearing sterile gloves at all times (was paranoid about infection) but all in all it was more convenient than going to hospital every week or two and I hope this may be an option for you too.
Jenny
x
Kay
just saw your note on the insurance company - i keep getting pushback fom the insurance company and then have to keep reminding them I am covered…haven’t had this one as they are flushing the port when i have the zometa. I tried to get district nurse to do this and they refused, but it does sound like yours might take you on. I wonder if it would be worth asking your gp for a referral to local hospital just to cover this ? at the same time you could write very strongly worded letter about how much it would cost to have port taken out (which they would cover !)… let me know how you get on, these things are a worry.
have a great weekend
love
cathy
Hi Tracy
Sorry to hear your feeling down, although I do know how you feel, I couldn’t sleep Sat night (husband snoring very loudly) and mind started wandering to all the bad things and I felt really down yesterday, I told the whole family beware I wasn’t having a good day, so we all went to the zoo had a fantastic day completely shattered mind you but we laughed and so many things I cam home smiling.
Cathy is right my tumour markers vary in the 40s if they go up slightly they always assure me thats fine along as they go increase all the time.
Kay I hope your results are positive, I am having a CT on Friday please send positive vibes my way and I will sending mine your way. Insurance companies are just unbelievable you cannot guarantee anything with them, lets hope the nurse can find the info she needs.
Hope you enjoy the rest of the weekend.
Love Beli x
I am so fed up today I hope you don’t mind me moaning. We’ve had a very busy weekend with village fete yesterday and out with the kids today. Came back in this evening and started shouting and getting really cross with everyone and then ended up crying my eyes out. I think it is just because I am so tired today. Also I am having trouble with my breathing again and have started coughing again. Having CT scan Wed to check if fluid has come back in my lungs. I am so worried that I am going to end up back in hospital again to have the fluid drained out. I was in hospital last June with breathing problems. The trouble is now I have started to think is this it now have I had my year and am I going to get worse now. I’m sorry to sound so miserable but I had to get it off my chest. Also my hubby goes in to hospital 22nd to have his thyroid removed so I don’t want to end up in hospital the same time as him.
I’m sure I’ll feel better tomorrow when I’ve had some sleep.
Caroline
Hi Everyone,
Sounds like a few people are struggling with things at the moment - sending supportive hugs out to you.
Beli and Kay, sounds like you’ve been getting your money’s worth at the hospitals recently! - it’s such a drag and takes up so much time out of your available time/energy. Sometimes feels like there’s none left for anything else.
Kay your TV scan sounds a bit unpleasant - just the name sounds ugly and uncomfortable! But it will be really good if they can sort out your bleeding. Your insurance company sound so ignorant and short-sighted. I think Cathy’s right about mentioning how much it will cost them to remove and then replace it - money’s probably the only argument they’ll listen to.
Tracy - I just sent you an email before I came on here. I’m so sorry to hear you’re feeling worse, but glad you’ve got some stronger tablets. I think anti-depressants are wonderful things, and it’s well worth taking them if they can ‘prop’ you up for a while and help you re-engage with life. Is your GP understanding? I agree birthdays and anniversaries are blooming painful affairs. I don’t know anything about tumour markers as my Onc won’t really discuss them.
Beli - sounds like you managed to do the right thing and nip your bad day in the bud. The zoo sounds great - sometimes a day like that full of idiotic laughter is just what you need. Which zoo did you go to?
Will be thinking of you and Kay on Friday.
Caroline - what can I say? You must be so worried about your lungs. No wonder you got snappy. And your hubby needing an op just adds to the worry. Getting overtired doesn’t help, but it’s so easily done. I get frustrated if I have to cut down on what I’m doing, so then I overdo it and get miserable/grumpy. But we have to grab opportunities to go out and do things. We’ve had a huge Fun Day at our church today, so I’ve been doing face painting all day except when the kids Gospel Choir I help to run were performing. Yesterday I spent hours at rehearsals, tomorrow it’s work in the morning then the Cinderella Tea. I know I’ll be seriously shattered after all that! But I love doing it all, and I’d be miserable if I sat at home while these things were happening, and I wasn’t a part of them. The kids were brilliant - singing their little hearts out.
Anyway Caroline, all the best for Wednesday. Hoping it’s good news for you.
Big love to everyone,
Jacquie xx
Hi Caroline
Sorry to hear that you are having breathing problems, I have been panicing that the fluid is coming back and am due a scan next week. I was told by my oncologist that he had only ever had one person where the fluid had returned after a pleurodisis. Good luck with your scan, hope all is well
Best Wishes
Kathryn
Thanks Jackie I feel a bit better today but still can’t bend down without being short of breath. Katie I’ve just read your post on another thread it seems yo are having the same problem then. Its really frightening isn’t it because without your lungs working it makes everything else so hard. I’ve been getting frustrated because I had just started to get back in to my gardening but over the last 3 weeks Iam really struggling. I’ve got a scan tomorrow you’ve got one next week havn’t you?
Good luck
Caroline