Hi Lauren.  My wife, whilst still undergoing treatment, found out too she had lymph node involvement. Not gonna lie, it's a rollercoaster. Just as you have gotten your head around one thing, and think you have it sussed, something else comes knocking at your door.

Lymph node involvement can still mean it's localised, and not elsewhere. We too were worried. I mean, you always just think the worse.  She got her full body ct, bone and mri scans and she was clear elsewhere. So whilst i completely understand your worry and won't patronise you by telling you to calm down (cause i know it's easier said than done), I will say it's still very much treatable/curative even with local lymph node involvement.

Good luck.

Hi,

Thanks so much for replying. I really hope your wife is doing well now :)

I had all those scans before I started chemo and they all showed it wasn't elsewhere either which is good. But they told me only one lymph node contained cancer cells. Now after my mastectomy the microscope has spotted a lot more. I'm just so sad that chemo didn't kill them and worried they may spread or already have. Just recovering from one surgery to be told I need another now to remove all nodes.

I'm just scared and a bit lost when I was finally feeling like I had a grip of everything!

Thanks so much for your reply, really appreciate it.

Hi, they seem to have done things in a different order for you than with me.  I had a lumpectomy and sentinel node removal at the beginning of September, which then turned into a mastectomy and full node removal as the sentinel node was positive.  They removed 9 nodes in total and 3 were cancerous.  I was terrified when I had my CT and bone scans, but thankfully they were clear.  As a preventative I'm now having 6 cycles of chemo, and then radiotherapy after.   
In my experience they said it was best to remove all the nodes so I'm not sure why this wasn't done with you?  Maybe different areas/oncologist views?  It is frustrating when you think you're getting a grip on things and then get hit with this.  I am massively regretting not having a double mastectomy - I don't even think it was discussed, you just don't fully comprehend it all at the time when you're making quick decisions!  I look horribly uneven and feel like the breast that's left is just a ticking timebomb!  I also opted for reconstruction further down the line after I complete radiotherapy.  Push to have the scans repeated again - hopefully that will give you a bit of a break from all the head messing this does to us!!

Hi,

Thanks for your reply. Originally the scans showed that just one node was affected. But my MRI after chemo showed all nodes looked normal so the consultant decided because of my young age they would try and save the nerves in my arm etc by just taking a few nodes to check. It's only after this and mastectomy did they spot stuff under the microscope, hence why I now need another op to remove them all. I'm just sad thag the chemo worked on the tumours but didn't seem to work on the tiny cells in nodes.

I really hope you're doing ok. Such a horrible journey to be on! :(

Yeah, it's been an eye opener how different hospitals or even oncologists within the same hospital do different things.

Think my partner's treatment plan goes as follows: 4x EC chemo, with scans in the middle of those 4 treatments. Then 6 treatments of a harsher chemo regime. After that, it's either the op or radiotherapy. Forgot which order.  Then 10 years on some hormone tablet.

Women who seem to be in the same position, get told they're getting a mastectomy from the off. We asked the oncologist about why this is the case as it's never ever been mentioned to my wife. He said that will get decided once the surgeon is in there rooting around. Her lump was quite large at 4.6cm and two known lymph nodes involved. But yeah, there are many stories out there with women with her exact type of cancer, with smaller or similar lumps being told they are getting one. It's weird how things differ.

Pleased to say that 7 days after her first EC treatment, her breast zaps of pain have disappeared, and she said her lump feels noticeably smaller. We're stoked about that.

Thanks - I'm gearing up for cycle number 2 next Tuesday.  It is certainly a horrible journey - my hair is starting to fall out now and as much as I said I'd be fine with it (I have crazy hair that has never behaved!!) I really didn't feel fine in the shower when clumps were coming out!

The node/nerve thing is strange - my arm felt more tingly/numb with one node out rather than them all, I was expecting it to be worse with them all out when in fact I think it's been better! I do think (for me anyway) I found it mentally easier to just having things removed so that there was nowhere for things to grow!  

I was told when I had my mammogram that the ultrasound they did on my nodes was clear, so it was just a simple case of remove the lump and check a node just to be sure.  Then it was remove all nodes and take the breast off as there is more there.  Then they said that they were sure the other nodes would be fine so it would just be radiotherapy but nope - it was then to be chemo as well!  The cancer rollercoaster is not a fun one!

Oh that's good to hear that the pain is subsiding - I have my 2nd cycle of EC next Tuesday.  I think in my case that as the lump was so big, but my breast was so small :laugh:, they really didn't have much to work with so it was best to have it off!