The letter to my dr informing them I have cancer came through today and on reading it is says I have a ‘number of involved lymph nodes’ and the pathology report (I stupidly asked for a copy of) says ‘multiple lymph node involvement’… I am so scared this means it has spread elsewhere in my body. I have a CT scan booked for next weekend which will answer that question but I am going out of my mind as I have absolutely convinced myself it’s spread.
I only found the lump once I was getting an achy, bruised feeling in my armpit (it’s what made me have a feel around) so it was obviously the lymph node involvement that I was feeling. I keep thinking if I’d checked my breasts sooner then I may have found the lump sooner etc etc
I have been on here and other places looking for the one story like mine that I can cling to but nobody seems to have grade 3 with lymph node involvement etc.
I can’t convey how absolutely scared to my very core I am. I am barely functioning and just trying to get through the day until I can take a sleeping tablet at night to knock me out. And even that doesn’t allow much sleep and I woke up today in a pool of sweat (of course I’ve convinced myself that is another symptom of it having spread).
I don’t know where to turn and am desperately trying to hold it together for my kids.
I don’t know why I’m writing this other than to get this out of my head and written down in the hope it can free up a bit of head space.
I just wanted to say that just because they have found it in the lymph nodes, it doesn’t mean that it has automatically spread.
I had grade 3 lobular BC, but no lymph node involvement, which meant lumpectomy, chemo, rads and hormone therapy.
However, a family member had the same diagnosis, with multiple lymph node involvement. It had not spread and so she had all the treatment and now has been clear for many years.
Of course it’s impossible to stay calm. You’re going through the worst time. But once you have your full results and consequently your treatment plan, you will start to feel better.
I keep trying to tell myself there is no point worrying over something we don’t know to be true (yet) but my mind constantly wanders to the deepest, darkest place. I
think if I knew that the worst case scenario was still treatable and doable then I would chill out a little bit but I am majorly panicking.
Sending hugs Nic & do put it all here whenever you need to.
What you are going through now, is the worst part of it, it does get better when you know what you’re dealing with & getting the ct scan out of the way, will be a start.
Having been on here for just over a year now, there are others with a similar diagnosis to you & node involvement
who responded well to treatment.
The terminology of reports can look scary, but this is standard technical language & does not mean it’s spread, its just looking at the pathology of what’s been examined.
Sending hugs
ann x
Hi Nik,I’m not 100% sure of the stats but something like 1 in 3 ladies when first diagnosed have lymphnode involvement ,very rarely has it spread elsewhere .There are many ladies on this forum who have had similar diagnoses and are very successfully treated ,there is a lady who had 24/25 lymphnodes affected and is still going strong 10 years later.
Thank you. That is the kind of thing I need to read. I just really need to stay sane until the CT scan and results. I’m just so scared.
I hate walking about with this still inside me, every minute wondering if it is growing and/or spreading. I know the doctors need all the information before giving me any chemo but I wish I could just start making this hideous thing disappear right now!
Yes it’s very hard to stay sane when waiting for all these test results ,in some ways it’s better not to have the letters cos it just makes you dwell on things even more and scare yourself silly by "googling "!!
My story isn’t the same as yours, but I do know how hard it is waiting for this result or that result and how your body plays tricks on you. I suddenly developed lots of aches and pains after my diagnosis last year and convinced myself I was dying. All I can say is that I have read lots of stories on here of ladies with lymph node involvement and lots of positive outcomes. The purpose of your lymph nodes is to stop the cancer cells spreading and they are obviously doing their job so please don’t despair (easier said than done I know). I think there is an area on here somewhere where you can get in touch with “someone like me” who has had the same or similar diagnosis. I hope you can find some support to help you get through this. Michelle xx
i haven’t got BC but I am having a preventative double mastectomy in two weeks. However my mum who is now in her 80,s was grade 3 with multiple nodes involves and that was 30 years ago and my sister at age 38 was grade 3 with lymph node involvement and she’s been fine ever since and that was 14 years ago.
In fact all of my relatives have had lymph node involvement and not one of them had it spread when they were diagnosed.
i hope this helps treatment is really really good with and without lymph involvement.
Thank you SL - I really appreciate you taking the time to reply. I am trying desperately to remain positive that it hasn’t spread anywhere else for me and that I can be successfully treated too xxx
Thank you - I did register for it on Saturday (although I was uncertain as I didn’t want to actually ‘speak’ (verbally) to anyone, I am far more comfortable typing messages at the moment).
Hi Nic Nic
I’m new to this forum after being diagnosed with stage 2 ductal cancer. I have had a lumpectomy and one lymph node taken out now to be told I need another op, chemo and radio! I’m devastated!
I keep thinking what else are they going to through at me!!! Have you been asked to go on Posnoc research? To either have lymph nodes out or to be randomly chosen maybe not to have them out?
The way you feel must be the same for all of us! I too read the letter and wanted to rip it up (I didnt)It read more serious than I was told!
I have been having nightmares that it has spread everywhere! This is because my mind is constantly on it from the minute I wake up but then I realised I needed to make myself busy and try to live my life as normal as possible (which is hard) as until I know my treatment plan which will be tomorrow
I need to be strong for my daughter (Im a single mum) and my mum who is 81! Dealing with this with no partner is difficult! Anyway after making myself busy and being in places I didn’t really want to be tomorrow is soon here! The waiting has been the worst! Tomorrow I’m hoping I get my op date and then can get on with it!
I found I felt a little better day by day but tomorrow I’m not sure what’s in store.
Hope you feel a little better tomorrow.xxx
Hi Nik Nic, I’ve got, or had, a grade 3 stage 2 ductal carcinoma with 7/15 LN involved. I’ve had a WLE with full excision. The excision was far more bothersome than the lumpectomy. I did my exercises religiously and have full arm movement. I’ve finished my chemo, and start my rads this Saturday . The LN are your knights in shining armour. It’s their job to stop the spread of cancer, but if it’s in the LN it makes sense to do a full removal. I’m also having the neck area above the tumour site treated to ensure no little nasties are lurking there. Have faith in your medical team as they only want the best outcome for you. In the meantime , keep busy, exercise, look at your diet in light of your diagnosis. There’s plenty you can do to take control. It’s a marathon, not a sprint, so do take care of yourself. We’re here if you need help. Good luck. X
Hi nik nic.
I thought I’d pop in and say hello. I felt exactly the same as you when I was diagnosed in April. Grade 2, stage 3 as 7 out of 26 nodes affected. I was terrified. One day my legs were so jelly I literally couldn’t hold myself up in the shower.
I was absolutely convinced it had spread. It hadnt.
Lymph involvement is very very common.
I know it easy for me to say four months down the line, but honestly things will improve greatly for you once you get the waiting for results bit out of the way. Also, try not to get too caught up in the stage 3 thing . This covers an absolutely vast amount of circumstances. Most people with lymph involvement have treatment then move on with no more cancer.
Please try to stay away from dr google or the secondaries threads on this forum. I was obsessed with them when I was first diagnosed and all I did was scare myself silly unnecessarily.
You won’t be able to follow the stories of most women with our diagnosis on these forums as they’ll now be cancer free and getting on with their lives without the need to come here anymore.
I had mastectomy and full lymph removal in may.
I’ll be honest, the op was no problem at all. I was out and about (having a pub lunch) within 48 hours.
I’m now on chemo. I’m due my 3rd next week. The only side effect I’ve had is tiredness around lunch time. A cat nap sorts that out.
I’ve also cold capped and have so far kept all of my hair (head only ?) xxx
Thank you all - I am slowly getting through each day (some are very much harder than others) and the only way really that I can see to get through right now is to not think about things. The moment my brain wanders to ‘that place’, I can’t seem to pull it back from edge and that is when the panic kicks in.
I just want to be at the point where they can start treatment and it is the best possible position for me to be in…
Thank you again for your thoughts and comments xxx
Hi Nik Nic. I can say that the waiting is THE WORST! I was convinced it had spread to my brain, bones and god knows where else! I have stage 3 grade 3 lobular which has spread to my nodes on one side. I was so relieved when my ct scan came back clear for my fleshy bits but it did show a growth on my hip bone which will be monitored. I’m having chemo first and then double masectomy (even though only one is affected i want them both gone!) and then rads. Although it was nerve wracking being told it would be chemo first, at least I know that my whole body is being treated rather than surgery just targeting the affected area. I was assured by all the lovely ladies on here that although we think it’s spreading like wildfire during this waiting period, it really can’t grow that fast. But I did feel completely out of control and so changed my diet to be extra healthy and cut out any junk that could possibly feed the cancer. Knowing that I was doing everything in my power certainly helped! But I do still cry, shout and scream when I can get away with it. I mean damn it, we have cancer after all! This is the hardest bit and you will get through it. I’m 5 weeks since diagnosis and 2 sessions into chemo and although the side affects are gnarly, I frequently vomit in public and am now avoiding what may be any mild British sunshine by hiding my bald bonce under floppy hats; I feel much better knowing now that although it has spread, I know where it is and I’m kicking its arse. Better the devil you know. You will beat this. WE WILL BEAT THIS. Xxx
Thank you KBomb, I really do appreciate all that have taken the time to comment for me. I am slowly getting through the days - we have a trip to the seaside planned for tomorrow so I’m hoping to treat tomorrow as a ‘normal’ day where I don’t have to think about stuff!
I spoke to a gp today and they have prescribed me some mild antidepressants and a beta-blocker to take should I feel a panic attack coming on. I only really spoke to them for some more sleeping tablets but have taken their advise with the other meds.
I’ve always been one to shy away from medicines - I’d take an ibuprofen if I had a bad headache but nothing really stronger than that. It feels odd to be taking stuff now, but with chemo in the coming weeks I guess I’d best get used to it!
Thank you all again, this really has been a huge help to me xxx