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Waiting for follow up treatment for breast cancer

mariesnowgoose
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Hello world.

Just posting to say feeling fed up and slightly annoyed. Not even sure if I want to go ahead with proposed follow-up treatment - 6 sessions of chemo (FEC-T if that means anything to anyone?) over 18 weeks, followed by radiotherapy, followed by a year of herceptin. Well, they tell me herceptin treatment is just for a year, but why do I get the feeling they might be fibbing about that as well?? 

I guess everyone's experience of cancer treatment will be different depending on where you live.

Where I live it is not so good. Maybe it is not just me, or where I live? Perhaps it is just because support is patchy (or non-existent?) from the day you are diagnosed through to operation(s). In my case it has been 2 operations, a full mastectomy in March followed by lymph node removal in April. Stage 3 breast cancer, btw.

Where I am there is just one specialist Breast Care Nurse who works between 2 hospitals. So the poor lass has a massive workload as you can imagine. Not much help to me or others in the same situation though :(

The opportunity to talk long enough with any of the 'specialists' who are involved with my particular case has been very difficult from the outset. You're lucky if you get 10-15 minutes max, and that is only on the official appointments made by the consultants involved. No chance of speaking to them outside of those appointments. And no cancer nurse to talk to really, so feelng pretty lonely.

Anyway, here I am at some godforsaken hour unable to sleep because appointments have been chopped and changed today at the last minute - again! - with no prior consultation or explanation. They would have had me going for a full body scan to the hospital at opposite end of the county the day after my very first chemo session(!). I spotted their mistake, so they have now kindly moved the first chemo session to the day immediately after the full body scan. That's much better - not! Plus loads of other stuff I won't bore anyone with. Seems right and left hands don't talk to each other where I am and you're left stuck as an uninformed and ignorant 'piggy in the middle'. :p  

Is it just me, or has anyone else felt like a piece of meat in a sausage machine? Shoved onto the next stage with little or no support between appointments/operations? :confused:

 

 

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    Know exactly what you mean. Feels like a meat processing plant and you’re the meat!

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    Hi there ...

    One oncology nurse is dreadfull ... for that nurse too, who must be run ragged ... l was given the number to ring for our oncology nurses (plural) and they would phone back within a day ... 

    I know they have to make so many cutbacks , if only they knew how scary it is going through this process ... they would change things ... but sadly that's the way everything is going now ...

    But hope writting it all down and having a vent, in some way helps ... chrissie   ....

  • Offline in reply to rileyroo

    Helo rileyroo :)

    Well, I've managed a couple of hours sleep so even though tired I feel a little better.

    Don't you just love the way you're supposed to become an expert on your cancer overnight?

    And the way that the consultants drop in phrases into their (way too brief!) 'consultations' with you that  you've never heard before, or they make a throwaway comment that doesn't make sense, or obviously needs further explanation, but you don't get to realise that until you're out the door and feeling a bit stunned?

    Well, that's OK, you tell yourself, they'll be explaining a lot more in a bit, or maybe next time you see them. Nope. Nada. Zilch.

    So, here we are, left facing one of the most dangerous diseases on the planet. My bet is you'd get more explanation and one-to-one buying a second hand car than you do for a serious cancer consultation  >:)

     

     

  • Offline in reply to Chriss

    Hi Chrissie,

    Yes, it is definitely the way it's going, and probably across the board and not just with cancer.

    But I don't think we have to just sit down and take it, this is our very lives we're talking about with this disease, not just a scab on the knee or a bruise from bumping into something.

    Very first meeting with oncologist was 8 days ago on 14th May, never seen her before. She's OK, very direct (which I prefer) and one of the things she tells me in our fairly brief meeting is that if I need any dental work or tooth extraction to get it sorted before I start chemo as it can be dodgy once treament starts, and dodgy also for 5 years after treatment finishes. Hmm. So I have 2 weeks to arrange this before chemo is planned to start on the 28th May.

    Next day I'm straight onto my dentist, and luckily get an apointment for 5 days later (phew!) on 20th May. There is a tooth he has been keeping an eye on for the last 4 years or so, and once I explain my situation he books me in for the tooth extraction on the 5th June.

    Now at this stage I still haven't been given any contact numbers for the chemo nurses who I am due to meet with tomorrow 23rd May, but as luck would have it one of them phones yesterday to offer me an appointment at a wig clinic. So I tell her about the dentist and she says they normally like to wait 7 days or so after an extraction to allow the cavity to heal before any chemo is given. Fine. She rearranges the dates to 11th June for pre-chemo session with the chemo nurses, then chemo to start on 13th June.

    I have to go out somewhere and when I come back my hubby passes me a message to say the same chemo nurse has been back on the phone to say the consultant wants the oiginal dates for start of chemo (28th May) to stay exactly as they are and they will just give me antibiotics for when I get the tooth extracted a week later. 

    Feeling really mucked about. You are chucked fron pillar to post. I've conscientiously done exactly what I was instructed to do, i.e. "get any dental work sorted out now!" So why the frantic rush all of a sudden? Apparently, so the passed on message from hubby goes, it's because of 'the number of lymph nodes', but I will know more when I (hopefully!) get hold of someone to ask about this later this morning.

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    Hi I know how you are feeling my chemo is due to start 5th June meeting nurses this Wednesday, to discuss things and tests I suppose- nothing has really been explained for that appointment...

    i have been advised the same as you chemo radio and herceptin injectors for a year ( which I am quite gutted about to be honest). I was hoping for 6 months only as I know they have been doing trials. One surgeon said 6 mo nths then the oncologist said 1 year... it will just be never ending...  I am hoping to have the cold cap so scared to lose my hair.. any advice or thoughts on it..  I just want to get on it now sick of waiting waiting waiting and more waiting .

    Surfgirl21

  • Offline in reply to Surfgirl21
    Hello Surfgirl21 My heart goes out to you, I know how you feel and good luck on the 5th. The day you start your chemo on 5th June I will be having a tooth extracted, as advised by the current oncologist. My chemo was due to start this Thursday 30th May. I have cancelled this and asked my GP to refer me to a different hospital and a different oncologist. The chemo nurse couldn't answer some of my questions in the pre-chemo session I had with her last week, just kept repeating 'You'll have to ask the oncologist that', 'you'll have to ask the oncologist that'. Unfortunately the current oncologist thinks she can shove me into some sort of supposedly urgent 'schedule' without a by-your-leave or ANY MEANS OF TALKING DIRECTLY WITH HER - wait for this! - until the first chemotherapy session has started. Really?! Meat in a sausage factory, folks, at least where I am postcode-wise. So having being told by oncologist to "sort any dental work our before chemo starts' I then get the conflicting message that it suddenly makes no difference and they will just shove me full of antibiotics instead while they go full steam ahead with the original start date for chemo. You are thrown from pillar to post, given conflicting messages, but most of all not given the right information in a timely fashion, i.e. it is all 'drip fed' or on a supposed 'need to know' basis. So I am going for my tooth extraction on 5th June next week as previously arranged with my dentist, and as originally instructed by the oncologist, and have cancelled my start date for chemo the week before, i.e. it is due to start in 2 days time but no longer. I guess this up-and-down story continues for me, as it also does for everyone in this situation. But keep smiling everyone, we're not done for yet! xx You have to have faith in the system and the people treating you so you can go into it with good heart and confidence. For me that hasn't happened yet so I will take a while longer to think it all through and find the best way forward for myself, whether that be chemo or non-chemo. I am not going to die overnight for the sake of a few weeks delay, and I won't be railroaded down a path of no return without a good hard look before I make a proper & fully informed decision.

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