I don’t usually share to much but I feel like I’m falling apart and wondered if anyone was feeling like me, am I going mad. I was diagnosed with lobular cancer in May ER + HER-. I had a left mastectomy 4 weeks ago and sentinel node biopsy. I had the results of the biopsy today and 1 out of the 3 nodes removed was positive. I am now waiting for more surgery in September to remove all my lymph nodes and then chemo. I feel like I spend my life waiting for results or a plan and when I get there it’s just a new wait for something else it’s just torture. I’m a Palliative care nurse so my mind has gone into overdrive and I’m convinced I’m going to die which I know is totally irrational I just don’t seem to be able to find any hope. I have young children and the thought that I won’t be around fills me with an all consuming fear I literally cry. Have any of you been through removal of lymph node surgery? Does anyone know how likely it is that if you have 1 positive node the rest will be also. Google is not helpful I just can’t stop though. Sorry if this doesn’t make much sense I just feel completely overwhelmed and out of control.
I’m not a younger woman, I was 47 when diagnosed and its a good few years later now. I just didn’t want to pass by your message without adding some support to you. You aren’t going mad, you are shocked and struggling to process the diagnosis, particularly as you say you don’t say much/talk to people about your feelings. I can ‘feel’ your depth of unhappiness and panic in your post and I think its worth asking your BCN to get yourself referred for ‘Cancer Counselling’. You are definitely needing some extra help here, and as a nurse you will more than likely be aware that the help is all out there for you - Maggie’s and MacMillan’s both run Cancer counselling also. Please do consider ringing the helpline number on this website and asking for some guidance on where to turn for some extra help - as the ‘hopeless’ feeling seems quite ingrained, from what you are saying. I had NHS Cancer Counselling sessions, and remember saying to her that ‘I was certain I was going to die’, which she challenged. Have you considered the ‘Someone Like me’ service ? Where they pair you with a volunteer who is a few years ahead of you - with a very similar diagnosis and treatment plan…here are the details…
Please don’t be alone…you don’t need to be, and perhaps hearing from others who have experienced exactly what you are will help to give the hope that you have every reason to feel !
I completely understand where you are with this. I had my left masectomy last week and was advised my nodes looked ‘enflamed’ which has put me in a blind panic (er+her2+). I have 2 young children and find myself in floods of tears even when I have to say their names. It’s so bloody scary!! The waiting in-between tests and results is like torture, I find it hard to be present with the kids then so upset as they are the reason I want to beat this and I feel like I’m wasting my precious time with them. And when people tell me not to worry its bloody annoying!!!
But I didn’t think I’d make it to this stage with my sanity still hanging on but here I am ?.
You’ve got this… We are entitled to our wobbly days. Sending lots of positive vibes your way. Drop me a message if you ever want to chat, some wonderful ladies here have really helped me so it’s good to talk Xx
Hi, so sorry to hear how you are feeling and what you’re going through right now. This evening is the first time I’ve been on the forum in years as I was diagnosed back in 2008 but I saw your post and it struck a chord with me as I was 40 then and it was just days before my daughter turned 4. I had exactly the same thoughts that you’re having (my first thought was about my daughter growing up without a Mum) and I wanted to try and reassure you by saying it’s amazing how remarkable we can be - things will be tough at times but you will find the strength to deal with what’s thrown at you and you’ll get through it all. Don’t be afraid or awkward about seeking help and accepting it from anyone - my advice is to listen to the practical tips on this forum but remember we all react to things differently so no one’s story is the same.
And my cancer experience - I had all my lymph nodes removed and only 3 were positive. I had chemo, mastectomy, rads and tamoxifen for 10 years. But I’m still here and my daughter turned 18 in May
Wishing lots of hugs for the start of the chemo. Good luck x
I’m guessing that you may well have already have had your node surgery by now, but I wanted to reach out because I’ve been where you are. Other than the fact that I was a right mastectomy, rather than left - all your other things matched mine.
I was convinced that all my other nodes would be absolutely full. Totally convinced. Then I got the news that not a single spec of extra cancer was found in them - just in that one sentinel node. For my own reasons, I decided against Chemo (totally personal choice with specific reasons btw) but have since had radiotherapy and am on Prostap injections for ovary suppression and am 6 months into taking Anastrazole. I just wanted to say to you - it is all manageable. One step at a time And if you need to chat, drop me a message any time xxxxxx
Just sending you some support I am in a very similar position but just a few weeks ahead having had the node clearance last week. I totally understand how worried you are and it is lovely that there is so much support from others on here who have been through this. Take care I am thinking of you.