14-02-2018 08:36 PM
Thank you Rockstarchic. It is a shame about some of the nurses but I have to say my BCN today was totally brilliant. Couldn’t believe it was the same person. She was everything you could hope for and expect from a BCN.
Love Frances xxx
14-02-2018 07:39 PM
14-02-2018 05:49 PM
Been thinking of you all day Frances. Not the news we wanted to hear, but please remember that it could still be scar tissue. The consultant radiologist at my hospital was convinced that my scar tissue was a lymph node "that was affected". He added that whatever was there "shouldn't be there" and then berated his colleague who had already told me that my lymph nodes were clear with the words "we are doing this for confirmation purposes". As they left the room, one of the radiologists wished me "the best of luck" and the nurses in the room commented that there was still a small chance it might not be a recurrence. So I was 99% sure that my cancer had returned. But my report came back saying that there was no node tissue present in any of the biopsies taken, and that there was no evidence of malignancy either.
They can see lymph nodes on ultrasound, although they can never be 100% sure that there they don't have minute bits of cancer in them unless they're removed. Can you request a core biopsy? The fact that they want to do a FNA rather that core would make me think that they don't expect it to be cancer. My radiologist consultant also said that there was "no point in carrying out a FNA". This convinced me that he was pretty sure what he was looking at and that it wasn't good. But he turned out to be wrong.
I know exactly how you're feeling, and no amount of advice saying not to worry will help. I hope with all my heart that your biopsy comes back negative. Sending you big gentle hugs and lots of love, Ann X X
14-02-2018 03:58 PM
Saw my BCN who thought it might be scar tissue but sent me for ultrasound. When sonographor said she wanted a colleague to look I got a bit worried. Apparently a couple of nodes were seen that were fine but apparently one node has a cortex thickening and they want to do a biopsy. The was no doctor available to do it so have to go back Friday. I asked if it would be a core biopsy as before but they said it would most probably be a fine needle. Little concerned there as have heard they are not as reliable. They said it can be different reasons for thickening and asked if I had had any infections recently . They did mention radiotherapy can sometimes do it.
Went back to see my BCN who looked quite surprised and of course I had a cry and said how scared I was. BCN was brilliant and said all the right things under the circumstances. I did ask her honestly what she thought and said I know I shouldn’t. She said 50/50 so at least she didn’t try and tell me it would be ok. I asked her why didn’t the oncologist find it last Friday and she shrugged and wistfully said she didn’t know.
Results will I’ll be back after MDT meeting the following Friday. I have chose to go to the hospital for the results. If it’s good news they would tell me over the phone. If not they ring and ask you to go in. I couldn’t stand the journey to the hospital knowing it was bad news. Would rather be told whatever there and then.
To say I am sick with worry is an understatement. I live on my own and don’t have any family. Just hope I can get through without going to pieces.
Just a thought. Are lymph nodes normally detected on an ultrasound?
Love Frances xxx
13-02-2018 02:50 PM
Awww Frances. That's such a shame that you've not had the confidence in your team that you should. I can't really complain about mine, other than I let them convince me to go for WLE rather than mastectomy from the off. But they came up trumps for me when I just couldn't get on with my life and offered me a double mastectomy with DIEP recon. My BCN has always been so supportive and has contacted me quickly when I've had any problems. She even came in to see how I was getting on after my recon op. Think I've been one lucky bunny from that side. Take care and will look in tomorrow looking for some good news from you. Ann X X
13-02-2018 09:17 AM
Thanks Ann. To be honest I have had some unpleasant moments not with just my BCN but others in the team. Had said to myself I wouldn’t use them again. But......needs must and was my only port of call this time. I’m just grateful and lucky my BCN turned up trumps this time.
During treatment and the Moving Forward Course I met several ladies who all felt the same about their BCNs as I did. I think it is so very sad. The facilitators on the course said they had heard similar things before and didn’t know what was going on.
just have to remind myself there are 100s of wonderful BCNs out there but guess we don’t hear as much about them.
Love Frances xxx
12-02-2018 10:02 PM
So glad that your BCN is helpful Frances. There are some awful stories on this site about nightmare BCN's! I know it's going to be difficult for you, but try and relax till you see her. I'll be thinking of you on Wednesday and sending good vibes your way for equally good news. Let me know how you go. Love Ann X X X
12-02-2018 03:30 PM
Just a little update.
My BCN has ring me and was really understanding. She is going to fit me in after morning clinic at the hospital on Wednesday. she said if she couldn’t tell by examining me then would send me for ultra sound there and then. That has really helped me but know I’ll be really worried if she does send me for one. Far better to be safe than sorry and will at least know for sure.
I’m due a blood test at GP Wednesday and was going to cancel but BCN was really good and said get the request from your GP (which I have) and you can have it done at hospital at the same time.
Well I have nothing better to do on Valentine’s Day. ❤️🌹.Have bought my BCN some chocolates as a thank you though.
Love Frances xxx
11-02-2018 09:27 AM
Thanks Ann. Yes the scar glides over it but it is more pea shaped and firm. Slept well and feel ok this morning. Just hope that feeling stays with me until I speak to nurse. Sending hugs back.
Love Frances xxx
11-02-2018 09:14 AM
Keep your pecker up Frances. I was in exactly the same position just two short weeks ago. I was convinced that the cancer had spread everywhere and was barely able to function. It's horrible how our brains go into overdrive, isn't it? Wish you could switch em off sometimes! If it's any consolation, my scar tissue didn't appear to be attached to my scar either. Feels like quite a smooth elongated lump that the actual scar glides over. Come back and let us know how you get on. Sounds very similar to mine, so hoping you have worried over nothing. Sending big gentle hugs Ann X X
10-02-2018 08:50 PM
Thanks Ann, I have r7ng and left a message for my BCN, albeit a tearful one and said I needed to speak to her and please could I see someone. Not sure I can wait until the drop in. Also I know my BCN does clinic with my surgeon on a Monday and hoping upon hope there might be an opening to see her at the end of clinic. I feel sure my surgeon would be the best to tell me as she knows what she did. I’m even prepared to pay to see her privately if that’s what it takes because I’m so worried.
Really pleased your results were all good. Praying and hoping I’ll be able to say the same.
Thank you for replying.
Love Frances xxx
10-02-2018 08:03 PM
i found a lump under my sentinel node scar just before Christmas. Saw my BCN who said that she was really sure it was just scar tissue, but thought she'd organise a scan just to be sure. Had an US scan done a couple of weeks ago and biopsies taken. This put me in a total spin, so I contacted my BCN again to ask her to phone me with results asap. She reiterated that she was sure it was scar tissue, but the consultant who had carried out the scan felt it was something more and needed checking. She phoned me a week later with the fab news that it was indeed scar tissue. My point is that people who do physical exams are pretty good at gauging what are post surgical changes and what are not. But, if I were you I would phone my BCN and ask her to arrange a scan for you so that you can have peace of mind. I got myself in such a state when they took my biopsies because of things said by the consultant who took them, so I know that once you start thinking dark thoughts, it's difficult to stop. Hope you find peace of mind one way or another soon. Big hugs, Ann X X
10-02-2018 08:42 AM
I’m getting myself in a right old stew. I had a WLE which involved losing nipple and Sentinel Node biopsey on 13th September last. All went well and had the usual aches, pains and stabbing sensations on and off. Only needed 15 rounds of radiotherapy which I completed on 8th December 2017.
Examining myself 10 days ago I felt a lump under my arm and at first thought it was on the sentinel scar. 2 days later I realised it wasn’t on the scar but underneath as the scar was movable over the lump. I could only find lump when standing. I wasn’t too concerned as I was due to see oncologist yesterday for follow up and discharge to local care and would discuss it with him.
Saw oncologist and on examination of sentinel scar he said “That is also normal”. I reiterated I could only feel lump standing up and he replied “This to me on examination is normal”. After I got dressed he was writing notes and telling me at same time and re the armpit said “no lymph nodes palpable, scar is normal and aches are in local regional area, no evidence of palpable disease”. He then dictated letter for GP, surgeon etc and said “left axillery node scar normal only on lateral edge couple of mm of thickening likely due to surgical changes, no local or regional disease”.
Because he was saying normal, no evidence etc it clouded my thoughts and I didn’t think quickly enough. It wasn’t until I got home and going over what he said I realised he hadn’t mentioned the lump. I know it is there and can still feel it. Did he just dismiss it? Did he not feel it? I told him twice I can only feel it standing. Why didn’t he get me to stand and show him? I did lie down and put my arm in the position he had it and I could feel it when I had a good feel around but it took some looking. Of course I am now worried and scared he has missed something.
I have read about other people getting all sorts of lumps and bumps after surgery and is part of the course and pray and hope this is what is is but because it is underneath the scar and oncologist I don’t feel found it on examination I am getting scared. I can ring my BCN Monday but she will just say come over to the drop in on Thursday if you like. That is a long way off when I live on my own and letting the gremlins work overtime.
Sorry for long post.
Love Frances xxx