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Nasty surprises/changes of plan after MRI?

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi daisy. Sorry to hear you're feeling low again. Its upsetting when they give you unexpected news/ information. I was told to be prepared for my cancer to be secondary and i was for 2 weeks! Its an awful time. But ask your nurse or consultant about anything you're not sure of. They would know about the mammary nodes. It really could be nothing and i hope it turns out ok for you

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi,

I'm certainly no expert being relatively new to this whole nightmare, but following my biopsy results which showed a positive node  the CT chest scan (along with pelvis and thorax) was one of the three scans I was told would provide the doctors with further information on how to best target my treatment.  (others were MRI breast, and bone scan)  Although it's so very frightening hearing about these things, I'd rather them do thorough tests now to reduce unpleasant surprises further down the line and get the right sort of treatment as early as possible.

It's terrible being thrown these curveballs though, just when you think that you're mentally on top of all the bad news already thrown at you.  Really not the best way of going about things as we've already had to cope with so much unexpected bad news to get to where we are now.

Sending hugs xx

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi Daisy4762 - it’s not surprising you feel angry and sad - and this is a wonderful safe place to vent your frustrations and get some support as you go forward. I understand your frustrations - my GP told me my lump was benign, then I went to the breast clinic and the first consultant who examined me told me 100% it wasn’t suspicious but he would send me for a mammogram and ultrasound anyway. So it was a total shock when the radiographers told me that the lump was almost definitely suspicious. 

Shi makes some good points - your team really will be tailoring your treatment for you, but do make sure you ask questions when they arise. That said, some people don’t want to know and just go with it, others want to know details. That was me.

I’m sure you have heard it before, but it really is best to try to avoid Dr Google. He really doesn’t know your specific case and can cause unnecessary concerns.

My very best wishes to you - and do come back and chat on here anytime you need to. Big hugs,  Evie xx

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Community Champion

Re: ,Re: Nasty surprises/changes of plan after MRI?

Daisy ❤️ Have they advised what time your doctor is contacting you? Please do not 🤯 remember your team are tailoring your treatment plan specifically for you and they could change it again during treatments ❤️Remember they will be doing what’s best treatment plan to help you kick its ass 🥊🥊🥊 please read Mountain Lion by strawberry blonde (think it’s in hope and inspiration) it has helped so many of us during treatments 💪💪💪 now Hoike your kylie gold hot pants up and get ready to do the locomotion 💃🏻💃🏻💃🏻 Through treatments, it’s a rollercoaster 🎢 hang an tight with others you will share your journey with on here 👭 and remember you are in control even if it feels like you are not 💪 💕💕Shi xx

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Having now seen a letter sent to my gp, I’m really angry and sad. I was told my mri showed nothing new. I now understand that it showed an indeterminate mammary node and that is why I now need the ct. so it is bad enough I am probably at a more advanced stage of disease than I thought. But now I learn my registrar told me that the mri was “business as usual” when it was not. And the first nurse I spoke to said this was a routine tick box exercise to order the CT which is also crap - they are ordering it because the mri showed this suspicious area in my internal mammary nodes. This is after the first consultant who examined me told me my lump was “benign and a milk duct blockage” (I was breastfeeding). This is simply too much! Anyway, does anyone else have internal mammary involvement? Dr Google is not helping...

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hello everyone and thanks so much for all of your replies. I’m sorry I don’t always reply to each one individually because I’m a bit overwhelmed sometimes but I do read and appreciate them. I hope all of you in treatment are feeling well and getting great results and that everyone waiting for test results gets good news.

 

i was feeling so positive after my MRI. Ready to start chemo next week feeling calm and ready to kick bum! Today though I got a curve ball. A phone call from a nurse saying not to worry (ha bloody ha) but I have a chest ct scan coming up. She said oh it’s just a box ticking exercise for everyone with positive nodes (which I knew I had). But my onc has previously said no need for the CT. Then I phone my usual nurse who says, listen, I want the dr to explain the change of plan, there was something come up at the MDT but she isn’t the best person to explain it, the dr will call tomorrow. 

now that’s me back in a dark place again. What did they see that makes them think a ct is no longer a waste of time? I have been I think quite good at getting my head round my diagnosis, fighting on, but if I have spread I’m afraid I will have no fight left to give 😔 

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Thanks Amy.  This time is a mixture of seemingly normal days and completely frightening / different days.  One day at a time is probably best xx

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi alison. Take it one day at a time and try and focus on the positive things in your life at the moment. Sorry, i know that sounds cliche! There is such a lot to learn and cope with this on this journey but you will get there. Yeah, the bone scan sounds different to pet scan. You have to wait an hour for the injection to work and they sent me to the loo once. Like you say, it makes things easier when the staff are nice. I got sent a letter with my diagnosis the other day and some of the words on there really confused me lol. I had to phone them so they could explain certain bits to me. Let me know how you get on and im always here for a chat

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi Amy,

All this medical terminology is new to me but I don't think I'm having a PET scan as there's no mention of that in the leaflet I was given.  I was told I'd need 3 scans: breast MRI, CT and Bone.  I was feeling quite numb when they told me all this so I didn't take in a lot of detail.  Yesterday's CT scan was quicker and easier than the MRI and I think this was helped by the person doing the scan seeming a kinder and more relatable person.  There was also a picture of autumn leaves on the ceiling which helped me relax.  This Bone scan I'm waiting for seems like more of an ordeal as I have to arrive for an injection then wait for 3 hours before I can be scanned, meanwhile drinking water and going to the loo as often as possible.

I suppose the next few months will be full of new experiences that I never thought I'd need.  And I'm someone that doesn't like uncertainty but this situation has it in bucketloads.  I probably need to get better at dealing with it.  Any advice welcome! xx 

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Re: ,Re: Nasty surprises/changes of plan after MRI?

I completly get where you're coming from. I had to wait over a month before i got my full results and treatment plan. I had my birthday too but i couldn't enjoy anything. How do you carry on as normal?? One thing to hold onto is that if you still feel well in the other areas then hopefully they will be clear on the scans. Is the bone scan the pet scan? I had the mri, ct and pet scans. Don't worry, you're not going on and if you are, im good at that myself lol. I need to talk to others and i try to be helpfull but sometimes i think i can go on! I hope your scan goes well today, cts are very quick and easy. Let me know how it goes and good luck

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi Amy,

The CT thorax abdomen pelvis is this afternoon but I'm still waiting on the appointment for the Bone Scan.  Results still seem a long way off therefore.  When the consultant told me I needed these 3 scans, he said just to carry on my life as normal but how impossible is that with so much life-changing information to take on board?!  Also difficult when you don't know the full picture and of course I'm just really hoping that there is no spread.  This will be hard enough as it is and I just don't want to hear any more bad news.  I feel that I've just adjusted to one set of bad news, then I go for an appointment and there's more.  I know I'll feel better once there's a plan in place, life seems to work better once you know where you're going.  But right now, all my existing plans have been ripped up and instead there's this nightmare unfolding and I don't know how bad it will get.  It's hard when there's nothing you can do to help yourself at times like this.  I already ate quite healthily but now I've even improved that.

Sorry for going on a bit, but thank you for replying.  I hope you are doing ok yourself.

Alison xx

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Re: ,Re: Nasty surprises/changes of plan after MRI?

Hi allison. Do you know when you're getting your results? My consultant said 'treatable' too but what i wanted to hear more was curable! But like you, i had no symptons of it being anywhere else and thankfully after 3 scans i was told it hadn't spread. I hope its the same for you. Just think, you will have your treatment plan soon and then you can focus on fighting this. It is scary and waiting is the worst but you will be ok. Im here if you need to chat

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Re: ,Re: Nasty surprises/changes of plan after MRI?

That really is good news (relatively speaking of course) and must be such a relief!

Now you can move forward to the treatment stage.

I'm still searching for anything I can take as a positive as I don't seem to be doing very well at these medical tests so far!  But yesterday my kidney results from the blood test were obviously good enough for me to have the MRI scan so that in itself is something.  

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Re: Nasty surprises/changes of plan after MRI?

Hey Daisy 

Perfectly natural to be worried, I really don't blame you! If it helps at all, I had my third BC diagnosis a few months back. Each time there's been a round of extra scans just checking for anything else, and they've all been clear each time. Even had the consultant apologise to me in March and try to reassure me not to worry, whereas by this time I was actually glad of them all just to put my mind at rest that nothing would be missed!

Fingers crossed for you xx

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Re: ,Re: Nasty surprises/changes of plan after MRI?

So sorry you are going through this too, Alicat. I know exactly what you mean about it hitting you all over again. That split second where you wake up and everything is fine is real torture...

 

I got my results today and I’m pleased to say no nasty surprises. Mass is exactly the size they thought, no growth and no hidden nasties, one lymph obviously affected as well which we knew. All my bloodwork etc looks good too. So pretty much the best I could have hoped for, other than it all being an awful mistake lol.

 

hoping you get good news too alicat. Funny how “good news” becomes relative isn’t it.

 

hope all you other lovely people are doing well today xx

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,Re: Nasty surprises/changes of plan after MRI?

Hello,

I'm in a similar place as you with all this.  I had my MRI yesterday and then I'll be waiting for a further 2 tests (bone and brain scans) after that.  I know that my lymph nodes are affected, I'm just praying and hoping that nothing has gone any further.  Such a worry when I'm still trying to get my head around the whole diagnosis in the first place and the idea of chemo.  I don't have symptoms of spread but then that's no guarantee.  I'm trying hard to keep busy and focus on the consultant's words "this is treatable" but it's so difficult.  Mornings are harder than evenings because the situation hits me all over again when I wake up.

Sorry I don't have any real advice for you; just replying to say that you're not alone with how you're feeling.

Alison xx

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Re: Nasty surprises/changes of plan after MRI?

Yeah my oncologist said right from the beginning 'we can treat you no matter what'. Its hard to believe at times but they are truthfull. I had 'suspicious' areas around my stomach and lungs and i was told to be prepared for them to be cancer, which would mean my cancer was secondary. But thank god, they didn't show up on the pet scan. Its hard not to worry, i always think the worst! But in a strange way, you will feel better once you get your results (whatever they are) and get your treatment plan. Im just about to start my 2nd round of chemo. Then hopefully surgery then radiotherapy

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Re: Nasty surprises/changes of plan after MRI?

Thank you Hannahlizzy! I appreciate knowing that it is a possibility we switch things up! I'm sorry it happened to you, but it sounds like all turned out ok in the end! I am starting on chemo pre surgery anyway, I guess because of having lymph nodes, or maybe also because I'm triple neg - I'll just do what I'm told anyway! Surgery is up in the air also as I'm having some genetic tests and if they come back with any wonky genes then I think I'd prefer to go for a double mastectomy. It's so bizarre - just when you think getting the diagnosis is the worst thing ever, suddenly you find yourself thinking it's all relative really! I'm such an overthinker too, seriously terrible. I got referred to an nhs counsellor and when she phoned today saying she was phoning from the breast unit I immediately panicked thinking there was some awful new information or something until she explained who she was. She had such a sombre tone, jeeeez, lol.

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Re: Nasty surprises/changes of plan after MRI?

Hello lovely!

I am a massive over thinker so this resonated with me!

I was originally told I was have a lumpectomy, chemo and then rads (+ Herceptin). However, after MRI it was a bit switcheroo! I had chemo first to shrink the tumour, then surgery (double mastectomy) and finally rads.

Unfortunately for me, my tumour was hiding and made it look a lot smaller on ultrasound! But please don’t take this as gospel. I know so many ladies who are given a treatment plan and this is followed all the way through. 
Whatever the outcome, I’m sure you will be in the best hands and care. Sending lots of love xxxx

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Re: Nasty surprises/changes of plan after MRI?

I am glad that you have no further spread, Amy! I know already it is in my lymph nodes from an ultrasound and biopsy and whilst I would obviously prefer that it wasn't(!) my oncologist was still saying 'early stage' and 'curative' which was reassuring. I have been through different cancers with different family members before and I get the impression oncologists are not in the way of giving false hope! I am just hoping that they don't find anything else or say that the tumour is much bigger or something. Ugh, it is non-stop worrying!

Hope your treatment is going well so far, not too many side effects and zapping those pesky cells!xx

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Re: Nasty surprises/changes of plan after MRI?

I know how you feel. After being told i had breast cancer the consultant said i would need an mri for breasts and ct scan for chest, abdomen and pelvic. I was worried sick! Then i got told after them, that i would need pet scan too. The waiting is the worst part. Mine is in both breasts and lymph nodes but thankfully no further spread. I know its easier said than done but try and focus on positive things and remember, whatever the outcome that there is so much they can do these days. I agree with you about the mri, i felt so claustaphobic and it was so noisey that i could barely hear the woman talking to me lol. The other 2 are easy compared to that. Good luck and let me know how you get on

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Nasty surprises/changes of plan after MRI?

I know this is probably not a helpful thing to worry about, but I'm just trying to prepare myself. I had my first MRI today. I have no doubt this is routinely ordered to establish more clearly the size etc, but I am nervous about the results (I was not too enamoured with the process either - so long and so noisy!) Anyway, I was just wondering if anyone had any nasty surprises after their MRI - tumour much bigger than expected, second masses etc? And did it change the treatment plan? My oncologist hasn't ordered anything other than the MRI of the breasts so I'm encouraged by that, but I do fret about it being yet more bad news, just when I've got my head round the initial diagnosis. As I say, I know I should just wait and see, but I would find it useful to know how often there is any major curveball xx