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I think this is going to come across as confused rambling of a mad girl and maybe that's what this is! I just want to know if this is normal and it isn't just me being horrible and self centered because I really don't mean it!
I have finished chemo and had one mastectomy with a full axillary clearance (I am having the other side removed later on), I was told that I would most likely need radiotherapy due to my age, lymph node involvement and lack of family history/negative genetic testing. When I went to have my surgery sites checked I was told that someone (no idea who) told my surgeon before the operation that I would not need radiotherapy. This seemed odd to me as I have no idea who told my surgeon this and everyone that has spoken to me about radiotherapy has either said most likely or yes you will need it.
I don't know much about the cancer to be honest, I've not been told about how many lymph nodes were affected, how much the chemo worked if at all, the grade or a definite stage. It feels like as I am no longer having chemo, it does not seem important to explain or investigate things, I just wondered if anyone else had this feeling? I understand doctors and nurses need to see so many others and I feel like I'm being selfish but I honestly don't mean to be! I keep asking them what exactly happened but no one seems to know or want to explain. I totally understand that they may not know everything but I seem to know so little! I'm worried it may be a higher risk of coming back as it was reacting highly to estrogen and I was told I had a higher risk of recurrence. It might just be me being silly and thinking if it did come back I wouldn't know.
I don't really know how to explain what I feel or don't feel and I'm sorry if this does not make sense at all! I think I feel totally alone now chemo has finished and even though I had my op two weeks ago, everyone (including me) thinks I should be back to how I was and doing everything I used too. I don't have full uses of my left arm yet, which sucks if you're left handed! Does everything just go back to how it was and people just forget it happened?
I do apologise, reading it back it does sound crazy!
Thank you for taking the time to read this and I hope someone can understand what I am trying to say!
You are not crazy! You are entitled to have a full report on your surgery, and copies of all letters sent to your GP, who should also get full information.
It sounds as though your unit is not particularly well managed, and needs a shake up! If you mention that you are considering contacting PALS (the Patient advisory service, every hospital has one), it usually makes them shape up, as they don't want complaints!
As for the chemo/rads confusion, it's completely unacceptable that they should be making decisions and not informing you why, at the very least. You should have input as well. Try to take someone with you to back you up, so you have witnesses, they don't like that either, but it's your body and you should be in charge of what happens to it.
Two weeks is not long for your arm, but do get going with the exercises, push yourself until it hurts and try to go a little more each day. No pain, no gain, I'm afraid!
I am not medically qualified, please consult your doctor or undertake your own research.
mmm crazy then you are welcome here
Thats one heck of a poop x 100 story but as mistey has said there is utterly no way you should be in the dark. Errr excuse me who’s body is this??
So back you go to the BCNurse ask and what’s all this about
No answers then GP. I would like to see mebletters as is my rights
Still no answers PALS and you know you’ve been angry about breast cancer use that to fire you up. Dealing with PALS be cool calm and logical. I’ve done it and got results . I got a top notch oncologist instead of Mr Wazcock. Look at my profile
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Hi - its all very confusing and scary at 1st isn't it. I would make a double appointment to see your gp. They will have all the details from the hospital and will go through it all with so hopefully you can understand better what is going on. Otherwise you could ask to see your specialist cancer nurse instead who again will have all the facts at hand. When I was first diagnosed I found my GP really helpful and tended to ask any questions I had to her as at oncologist appointment I didn't feel I could take that time. Hope you get everything sorted out a you have every right to know all the facts
There is absolutely nothing wrong with wanting to know however much you want to know about your treatment! That is your right. Some people don't want to know much , some want every detail. Both are ok, but the patient should be the one to decide, not the doctors.
I discovered early in my cancer trip that my oncologist tended to over-simplify and gloss over things, and I'd realise afterwards that I didn't have the full story, or that what I thought I had understood didn't make sense. (I'm also very good at thinking of questions I should have asked, half an hour after the appointment has ended!) So I took to bringing a written list of my questions to every appointment. I'd add to the list between appointments, as and when the questions occurred to me. It helped me remember what I wanted to ask, and it also helped to stave off that feeling of needing to hurry through the appointment at someone else's pace. I asked for a longer appointment a couple of times when I had a lot of questions, and the oncologist was quite receptive to that. Maybe that's something you could try at your next appointment?
As others have said, it also helps if you can bring someone with you to the appointments - not just as a witness, but to back you up when you're asking questions. I did the same with the surgeon.
All the details you're asking about are things you should be told. You're not being unreasonable. You shouldn't even have to ask! And the mixed messages about radiotherapy are just plain unacceptable.
So, start with a call to your breast care nurse, if you're not due to see the oncologist or surgeon for a while, and keep going till you have some answers!
As to the feelings you described, I totally understand. From the moment of diagnosis you have a whole team of people racing you through this process - tests, consultations, chemo, more tests, surgery - then suddenly there's a lull. Nothing's happening. They've all gone away. Or so it seems. I felt abandoned. But they're just giving you time to heal from major surgery. You're not supposed to be back to normal, you're recovering. Take the time you need. Talk to your BCN. And come on here. There's always someone ready to talk.
Sorry - I tried to upload an image here, but I failed miserably!
Thank you everyone that replied!! I do usually have my mum or a close family friend with me and do take lists of questions, it just seems they are saying as little as possible, again it might be me!! I get copies of some letters but I do not think it is the same as the ones the team get, I saw a doctor yesterday and she knew nothing about who or why someone spoke to my surgeon about radiotherapy. It's been over two weeks since my op and still no results, I heard they were understaffed but it's hard to prepare myself if I don't know what is going on!! I think I'm just wanting to know what has gone on with my body and try to understand it, I do feel dropped by the staff since chemo ended and it's left me feeling guilty. I'm not one for wanting attention or making a scene so when I say dropped it's not for lack of attention it's more support, if that makes sense. I just feel like something isn't right and I find it very difficult at the best of times to work out emotions so this is near impossible!!
Thank you all again and hope everyone is happy and well.
I don't think I would call it normal but I will say it happens. Not all oncologist are equal, maybe clinically, and not all hospital either. I have had for oncologists in the past three years. Two moved one wouldn't answer my questions or take my opinion seriously, so I asked for a new one .this is your Heath, and unfortunately you have to be your best advocate. You know your body and how you feel. Do research on your cancer genetics and and your pathology results. Inly go to reputable sites like MacMillan, mayo clinic, CTCA. Get a second opinion if you need to. I have had to request things I should have been given and read reports of my visits that seemed like I had a physical when it was vitals and listening to my heart! Don't give up until you get the answers you need. Unfortunately even if chemo is necessary, it brings in so much money everyone seems to care about you during it. Then it often feels like you drop off the radar. At least for me, then at my follow up visit after surgery my oncologist yelled at me because I hadn't started maintenance chemo. She literally said, "if you don't get started on more chemo you might as well call hospice." But to answer your question you are not crazy, you are fighting an awful disease and you are in titled to a full report of each visit and any talks from tumor boards, consults, etc. But unfortunately you may have to keep asking and bug people. Or go to medical records and ask for it all yourself. And do your research. And as someone else here said patient satisfaction departments are the people who make change contact them if your not getting results.keep fighting and good luck!
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