Seems like I'll be needing a wig after all .......

Hi Barb, it seems Little Lamb was also similar in that the spread was missed even though she complained of symptoms. I know through my own research that grade 3 can spread to bowel/bladder/liver/lungs/spleen etc. So these oncologists need to treat the abdomen and thorax as a whole, not pass the buck to a GP if symptoms arise in those areas. We need to be insistent with them and as You say, lobby for regular scans and to be treated as a whole after having primary cancer diagnosis. Bless you Barb. Love Nikki xx

Hi Barb, I am so sorry to hear your news. I am sending love and hugs to you love Em xxx

Hello Barb, Sorry to hear your news, I hope everything goes well and you are soon over this bump in the road. LR

Hi PicNik, I never had any CT or MRI. Perhaps because I was so skinny they could have seen any lumps from the outside ha ha. My diagnosis and treatment (surgery) was 2017 and after recovering from that I've been pretty ok for 4 years. I am currently trailing back and forth to GP with various mystery symptoms and so far tests have shown nothing abnormal in the way of bloods or infections. I was put onto patient-led follow-up after surgery i.e. ring CNS if bleeding etc. CNS response is to direct me first to GP.  A couple of people in the know have expressed surprise that I never had CT or MRI. I am now considering whether to arrange for a private MRI but it seems an expensive way to put my mind at rest.

Hi Little Runner, I would request a scan first either through CNS or GP given your history and worries. If they refuse, I think I would be inclined to pay privately to put my mind at rest. I hope you get your request, be persistant, and if you find you're all clear great, no more worry. I too am skinny but my initial diagnosis was not felt through the abdomen. Take care and let us know how you get on. Love Picnik xx

Hi Barbs 

i was shocked to read your news must be so hard to get your head round it all again I am 1a grade 3 also and u were a great help to me when I was going through it all 

it's unbelievable that they don't do more ct scans for piece of mind ,how on earth do they know  for sure what's happening inside 

Please stay positive and hopefully chemo not to bad 

you are in my thoughts u have encouraged so many on this site ,thank you xx

Hi Barb, so sorry to hear this.  You come over as a strong, positive person and you will face this with more courage than I did when I recurred.  Support is here for you as you have given to others.  This disease is a b***ch

Sending hugs Dawn

MrsBJH. Barb you know we are all here for you, and as for the wig or not to have a wig, if you do decide to have a wig you could go for all kinds of fun styles. I remember a young lady at the hospice she made me chuckle with her box of wigs with all kinds of styles she decided to have a variety for a bit of fun and why need if it made her feel happy, comfortable during all that was going on then good for her, actually one day she brought in her wigs for us all to try and we had an amazing time together, sometimes its the little things that really helps. So its there if you decide for a different style change from time to time. Your right its damm unfair how it’s occurred and you have every right to be damm angry but I know how determined you are too which does help in a mental way.

I have been reading peoples messages and i see the scan more regular should be done to keep an eye on things, i do agree actually even if only for the first few years, the highest chance of it coming back is in the first 5 years after diagnosis so it would be prudent to have regular scan check ups because we all know cancer can be such a sneaky thing that can hide away where its not noticeable at first, maybe if regular scans were done they could treat it better. Its a difficult one really as we know sometimes the cancer is more aggressive then other times but better to get it early. 

I am waiting on scan results at the moment and to add to the issue scans are not getting sent back to the Gp or consultant until they are typed up and this is causing much longer delays. So I understand people’s frustration.

Barb remember we are listening ears and want to support you as best as possible and to also say, we are always here when and if you feel up to posting to us. I am sorry that you have had this happen to you especially with everything else going on.

Sending some gentle bear hugs  

So sorry to hear this MrsBJH, it is a daily fear for me that it returns, I had LVSI.  Sending love and hugs to you xx

Hello MrsBJH I’m very sorry to read your news. What a blow for you and your family. Sending you lots of good wishes that you’ll cope well with chemo and that you’ll make a good recovery. I had a grade 3 / stage 3c1 diagnosis in 2016 and have known from the beginning that in my case if it recurs it may be treatable but won’t be cureable. I had surgery followed by  6 cycle of chemo, then by radiotherapy. My friend is a chemo nurse and she told me most people cope better with it than they think they will. Don’t underestimate it - it’s tough going but it is doable. I know you have lots going on but do look after yourself and be kind to yourself as you go through this. Gentle hugs x