Now I have a pulmonary embolism. Short of breath last night continued this morning so I went to A+E where I spent the whole day before diagnosis and treatment. Is this common?
However, the good news is that I got my onc appointment moved to tomorrow!
All the best, Kinden x
Aargh, I feel at my wits' end. Hospital phoned on Friday and my appointment isn't until 11th November. I was told I have secondaries on 15th October, so that is almost a month. Have been trying to stay calm but not doing too well today. I think it is easier in the week, when I can distract myself with work.
Is it usual to have to wait this long to get a treatment plan?
Thanks for your message, the echo does sound like a breeze compared to other more intrusive tests. The appointment is at 8am so at least I can go straight to work after.
My head is absolute cabbage. I have known about one of the lumps since July and since the CT scan in early September I thought I had lymphoma, which would be bad enough, so I was totally stunned to be told I have secondaries, but coming on here has given me hope. I know that everyone is different, but to know that some have had secondaries for years and live well is a source of hope for me as I try to be patient until I get my treatment plan. I am sure I will feel better then.
All best wishes,
Thanks Bethie, yes it would be good if someone had told me that it is standard, I was thinking that there's something wrong with my heart as well! Still can't wait to see the oncologist! I guess t won't be until after the echo.
It shouldnt be anything to worry about (as if you've not got enough on your plate at the moment!) but an echocardiogram is often taken at the start of treatment especially if the treatment may involve any form of drugs/chemo that can affect the heart. They can then keep a close eye on it. It is a non intrusive procedure, other than having to be topless which I find very discomforting, and is basically like an ultrasound with some wires attached to you to take readings of your heart beat etc. I have had many, many echo's done as I have had heart issues over the years I've had SBC and to be honest it's the one that is the easiest to have. Having said that it will be yet another appointment that you are having to deal with, and wait to see what they say, when your head is probably full of all this rubbish that has landed in your lap after all these years. Good luck and I hope they get a treatment plan sorted for you soon so you know what to expect, most of us have been able to cope better once a treatment plan is in place, the waiting around really is the pits.
I had one, and presumed it was routine.
However it might have been a requirement of the trial I was on.
It would be nice if they told us when it's standard procedure!
Out of the blue I have received an appointment for an echocardiogram next week. Is this normal/usual?
Thanks, Kinden x
Thanks Bethie, your messages are very helpful to me.
My husband knows and I have had to tell my boss because of the time off for appointments (scan showed thickened endometrium so had internal scan the hysteroscopy and a polyp removed (happily benign)).
i have calmed down a bit. I rang my GP today and from my notes she could see that the lump which was removed had been sent to The Christie for examination to ensure that whatever treatment they decide on is what will tackle it the best, and I do feel comforted by this given their reputation.
i will try our Macmillan booth next time I am up the hospital, good idea thanks.
Hope you're doIng well.
I hope you don't have to wait too long, Kinden.
I understand about waiting to tell people. I did a similar thing. But make sure you tell someone so you have some emotional support. Do you have a Macmillan facility at your hospital? Ours offers counselling.
You're trying to get your head around an enormous issue, it can be lonely on your own. Especially with the earning responsibilities you have. Macmillan also offer really useful financial advice.
Hope you're managing to have a calm weekend.
Bethie. : )
it is a comfort to hear you talk in terms of years and I am glad to hear that you are finding the chemo being tolerable.
I am at the stage of not knowing anything at all about treatment and likely pathway, so am imagining the absolute worst. I am a person who needs to know everything and will have a big list whenever I finally get to see my onc! He had better brace himself too.
I have teenaged daughters who I have not told yet, am waiting until I have a plan and can speak as positively about this as possible. Neither have I told my parents or siblings.
And then there's work. I work full time and am the breadwinner of our family, our lifestyle is based on my income. What if I can't work?
i think I am focusing on the practical side to avoid having to deal with the emotional sledge hammer that has just hit me.
i will just have to be a patient patient for a bit longer.
All best wishes, Kinden
Thinking of you Kinden.
It's such a huge shock, isn't it? Especially as you say, when you don't feel unwell! It doesn't seem real.
I was shattered on cabazitaxel, but the chemo I've just started, Capecitabine seems a far easier beast to deal with. Hopefully I can stay on it a few years.
I hope they won't keep you waiting long to hear about your treatment. I found managing the waiting a little more bearable by preparing questions to ask. My oncologist looks 'braced' whenever I appear now with my list! 😄
I've found that my shock has eased quite a lot in only 2 months. But you can't rush it. I spent at least a month muttering 'I can't believe it' to myself!
Take care of yourself, and keep in touch!
Bethie : )
Many thanks for your reply. I am still reeling from the shock, and coping by keeping busy. I don't feel ill, I have a swollen leg which is caused by an enlarged node in my groin, so I had a CT scan following which it was thought I had lymphoma as nodes are enlarged throughout chest, pelvis and groin, so it was a complete shock to be diagnosed with secondaries. Am waiting, who knows how long, to hear what chemo they will give me.
How is it going for you on the chemo?
best wishes Kinden
I had primary cancer 4 years ago and was diagnosed secondary this June.
I have mets in my liver, adrenal gland and bones. I also have cancer in a cluster of nodes in my neck, one near my heart, several in my pelvis. Like you, I haven't heard of many people with nodal mets, but my oncologist said cancer just goes wherever it wants!
I was lucky to have noticeable nodes in my neck, otherwise I'd never have discovered the rest. It's bought me some time! : )
I did a trial of cabazitaxel and I've just started capecitabine.
How are you coping? When are you likely to start chemo?
i had primary BBC 11 years ago, and today had the news that I now have extensive mets in my lymph nodes, from shoulders down to groin. Waiting to see what treatment, know it will be chemo, but I have never heard of this kind of mets, I have heard of it going to lungs, liver, bones , skin or brain, but not nodes. Does anyone else here have any experience of this?