Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Waiting staging scans and feeling really ill

Londonmumof2
Posted by

Good morning everyone,  

I had a 27mm lump removed 4 weeks ago now,  and despite thinking my sentinel nodes were clear discovered only one was.  The other was basically full of a 7mm tumour which was a real shock. I had my bone scan a week ago,  which I thought went ok as the radiologist was so cheerful at the end, laughing and waving goodbye,  and even allowed my husband to film a little bit of it,  but I then had my appointments changed from seeing the surgeon this week (after my ct scan on Tuesday) and oncologist nwxt week to seeing then both this week.  I'm terrified that means that there is something bad on the bone scan. At my hospital if there are any secondaries they don't do anything except give hormones and only give chemo when the cancer is really bad.  If it's clear I would have the rest of my nodes removed. On the scan the was a light coloured area like a band right across my left breast (soft tissue) where my mastectomy was showing some activity,  but that can be from trauma etc, and my chest is still swollen on the lower half of my mastectomy right across that area. 

I've had really bad anxiety for the first time,  and suffer from reflux,  asthma and a small haitus hernia, none of which are an issue normally,  but I've had terrible reflix for the first time ever,  feel breathless,  have a burning in my lungs and chest (when my stomach is bad it seems to go through my bloodstream and make my arms and legs burn too!) and pains in my lungs.  I also have lost my appetite and have a bad headache. I've been to a&e and my blood,  sugar and vitals are fine apart from raised blood pressure, and I had a chest xray which was clear (though not terribly detailed like a ct scan). I've convinced myself it's in my lungs and bones and that I'm going to die in the next couple of years now  Has anyone else felt this bad waiting? I wish I could hack into the hospitals system! 

puzzler
Posted by

I can’t really help , but thought I would let you know someone is here to empathise.......

the whole diagnosis thing is a shock , and they do keep moving appointments and plans and I know that made me paranoid something awful was going on .......youwill see your team very soon and I hope they can put your mind at rest.......

reflux is awful........there are lots of things you can get your gp to prescribe......you don’t need to suffer .

the headache might be due to stress ,but sometimes just dehydration, if you have lost you appetite perhaps you are not drinking enough ?

everyone pretty much hates the waiting , but you will have a plan very soon , keep posting on here , and keep away from Dr google ! Very best wishes 

Londonmumof2
Posted by

Thanks.  I'm afraid is hard not to keep looking things up on Google! 

I'm seeing an emergency doctor at my surgery this morning as i really can't wait 2 days any more.  Iread in tears to dh this morning as i feel so stressed and unwell and think I'm going to jump from stage 2 to stage 4 this week. I have two teenage daughters who I'll leave behind....  I've always been a cup half full, everything will work out type of person, but i know this is really bad and I'm terrified and I'm convinced it's ad bad as it feels. 

I guess lots of people feel anxious when their nodes are positive,  but it was so big....... it means it's been in my nodes since last autumn....

Optimistic
Posted by

Hi  just a quick hug for you x. I was exactly where you are two and a half years ago terrified of leaving my family. It's took me a long time to get reasonably back on track. I had an aggressive Grade three  lump 36mm in 2 nodes one was an interpectoral node and apparently had 8mm deposit in it . I had three different scans all clear so please be hopeful really wishing you good results xxx

TheScriptFan
Posted by

 i hope i can put your mind at rest some what, i was diagnosed with breast cancer last year. I had a 6cm tumor in my left boob and it was also in my lymph nodes. I was stage 2/3. Last Tuesday i was given the all clear. 

Appointments do get changed, i know i've had mine change throughout my treatment. We've all been where you are feeling anxious and scared but you're going to beat this just like lots of us have. Ask anyone who had had cancer and they will all tell you the waiting is the worse part of the whole thing. 

As for the reflux see your doctor and get some lansoprazole it works a treat. 

Keep talking to us and let us know how you get on xxx 

 It's gonna make us who we are, it's written in the scars   "The Script"

Londonmumof2
Posted by

Thank you for the positive kind words. Did they not remove your nodes when they did the lumpectomy? It's so wonderful that you have the all clear!

As today has progressed I've decided it has spread to my lungs and spine as I have back pain between my shoulder blades and around that area, and sore kidneys! I now genuinely believe that it is too far gone,  and to top it all I found an unopened letter which I'd never seen before at the weekend behind the hall table dated 20/12 inviting me for a mammogram in January:((((  My daughter must have put it at the back of the table and it fell down the back.... Those 2.5 months could have been the difference......

I'll let you all know on Wednesday,  but feel so low, and I have to hide it from my daughters, especially the youngest who has GCSE exams all week. I could do with a bit of magic right now! X

TheScriptFan
Posted by

Yes they removed my lymph nodes when they did my first lumpectomy. 

What were your results after your lumpectomy? Have you thought of ringing your breast care nurse tomorrow. When ever i have had any worries or concerns they have put my mind at rest. They may be able to tell you why your appointments have changed. They really are lovely and won't want you worrying like you are. 

Please keep coming and talking to us, its hard trying to put on a brave face for others, come here and you can be however you want to be. 

I only knew about my lump because i had a mammogram, luckily they called me early at just 47 the lump was 6cm and i didn't have a clue it was there. When i had scans etc it had only spread as far as my lymph nodes, it wasn't anywhere else. 

I know its easier said than done but try not to worry about something you don't need to worry about. And ring your nurse, you don't deserve to feel like this. 

If i had a pot of magic i would send it to you xx

 It's gonna make us who we are, it's written in the scars   "The Script"

puzzler
Posted by

I understand how worried you are , but stress can cause all sorts of aches and pains , and try not to think too much about a few months delay , I lots of people on this site have been reassured cancerdoes not gallop away atthat speed .....you really don’t know what you are dealing with yet , i hope you have got someone you can offload too, you really need support .....if you need treatment you need to be as well as possible , have you got a good GP , theydo understand the stress of these diagnostic procedures ....best wishes 

itgotme
Posted by

Hi there.  I just had to reply to your post as I can sympathise with you 100%.  I am in exactly the same situation that you are now.  I have recently become a member,  and it’s been the best support.   On 1st May I was diagnosed with breast cancer, a 5cm tumour and spread t lymph nodes.  From then on it just been a round of scans and tests,  I have an appointment with my oncologist on 16th May to find out exactly what I am dealing with.

The days after I was diagnosed were terrible, I could not stop sobbing and had myself dead and buried within 5 months.  I had convinced myself that my back and hip aches was the cancer spreading to the bone and I was terminal.   It’s an absolute terrifying place to be and with a young family, extremely difficult to hold it all together, I really did feel like I was having a breakdown.  After a few days a very good friend pursued me to go to the Drs.  I did and they were fantastic.  I was prescribed diazepam, an anti anxiety medication.  It worked within an hour and it just helps you get through those tough days and helps keep a lid on those  thoughts that keep popping into your head.  The waiting part is excruciating and the days drag on for weeks, but I have found great comfort in this group, just writing things down and knowing that other know exactly what your going through helps. 

I have been told that I will be having chemo, so I have been doing a lot of research on what to expect, side effects and have been putting together a chemo survival bag, which for me helps me focus and feel like I’m getting a battle plan together.  I have also taken up all the offers of support groups, feel good session so my diary is not just booked with horrible medical things, but some nice things too.  You will get through this and once you know what you are dealing with I’m sure it gets easier to cope. I wish you all the best and sending good luck vibes and hugs. 

Londonmumof2
Posted by

Hi Puzzler, think you for sharing,  and I'm so sorry that you are hoping through this too.  I imagine that you are having chemo first before the surgery to shrink the tumour? Good luck at your appointment tomorrow:)

I went to the doctor yesterday and saw the emergency one who I'd never seem before but was perfect.  She was treated for breast cancer five years ago at the same hospital,  and very on the ball. She gave me some Diazepan, 2mg but I'm holding off them until tomorrow. As its in my node they do staging scans before anything,  and I'll have no chemo and lymph removal either which I hate add I'd have liked that surgery in thr beginning.  I kept saying how one nice wad much bigger than the others and it's been spreading onset the last month since my mastectomy.  Everything is easy in hindsight,  any I wish I'd made them re examine me physically before surgery,  and chase my mammogram when it read after the 3 years (3.5 in the end) I'd have found out about my list letter. Having said that,  the cancer is probably just over a year old,  so it could easily happened at a time between them.  Also,  my doctor yesterday told me that they missed hers at get mammogram,  and by chance she sent on holiday and found it in the shower (she usually had breaths). I cannot understand why they don't start us on hormone- suppressors after surgery either.....

Londonmumof2
Posted by

CT scans now done. The contrast injection is very strange indeed - it felt like I was being flushed with hot water,  and when it hit my bladder I wondered if I'd peed myself (I hadn't!). Now for the wait until tomorrow when I find out if (as I think) it had spread or not..... :/

AnnJac
Posted by

Fingers crossed for you xx

Anne xx

Londonmumof2
Posted by

Thanks Anne x

TheScriptFan
Posted by

Will be thinking of you

Please let us know how you get on, and remember we'll all be here for you whatever the result xx

 It's gonna make us who we are, it's written in the scars   "The Script"

Optimistic
Posted by

Lots of love xx