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Waiting for diagnosis

Bell H
Posted by

Hi - I've just joined and am lost as to where I should post.  I thought I did already but don't see it anywhere.

About a month ago I noticed a large lump on my neck just where my glands are.  I went to the GP immediately.  She gave me antibiotics to try first.  They made no difference.  She then sent me for a scan two days ago.  The next morning the GP phoned and asked me to come in to discuss.  She told me there was 'cause for concern'. with regard to a lymph node on my neck. Those words - 'cause for concern'  - they have made me really scared.  In three days time I have an appt with the ENT plus a biopsy.  Meantime, the lump is definitely bigger - quite prominent. Does 'cause for concern' always mean Cancer.  Apologies if I should not be on here due to not having had a full diagnosis yet. 

KTatHome
Posted by

Hello , welcome to the online community, and don't worry about posting here, although we of course hope you wont be posting here for long due to all the right non cancer type reasons. I also clicked on your latest activity to see if I could find a previous post but didn't find one.

For me back in April 2018 I had an enlarged lymph node (in my groin) which showed up on a scan, it had to be biopsied in case it was a return of my cancer, unfortunately mine was a return so I'm glad they did the biopsy which was painless, but it could have been just an infection, and I'm also told that if people prod their lymph nodes quite frequently they can get bigger from being agitated, so I suppose I'm saying try not to panic and take one step at a time, its good that they are doing further investigations. I was told by a very wise nurse when I was in hospital awaiting a biopsy not to google as it might be nothing. I am glad I didn't, but the wait was anxious. 

I was wondering if the Macmillan info on coping, your emotions would help you during your wait. Each time I have a wait for a biopsy or scan results I try and distract myself. Sometimes I write my worries down and read them back to see if the worries are something I can do something about, or to see if they are pure anxiety and should be crossed off the list, or to see if they are realistic worries that can be put aside for a few days/weeks until I have more answers, or can form questions for my next medical appointment.

Its a worrying time I understand that only too well, but coping with uncertainty is a skill and if its not cancer at least learning to cope with the anxiety/uncertainty wont have been a waste, as the skill can be used for any life event that wobbles us. I hope when you get the answers from the biopsy you come back to celebrate them, but if not good news we can point you in the direction of a group to join. 

I hope your appointment goes well 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Bell H
Posted by

Dear KT - thank you for such a lovely reply.  I have noted all you have to say.  You have lifted my spirits somewhat.  Thank you for sharing your own experience and I hope things are looking bright for you?  Thank you again. x  I will certainly look at coping, your emotions

KTatHome
Posted by

Thank you , if there is something you'd feel happier asking an expert there is the Macmillan support line 0808 808 0000 which is open Monday to Sunday 8am to 8pm and the there is the ask an expert button above. But I think all us patients and friends would say acknowledge that its an elephant in the room that you cant ignore, but you can just acknowledge that the thought is there and then get on with enjoying yourself or distracting yourself until those results come back. 

Please ask the person doing the biopsy, when will the results be back, and how will you get informed about the results, is there a contact number that you can ring if the results are late. This means you don't have to worry every day but if it takes two weeks just worry on the 13th day, and if the results are late you know how to chase them up.

wishing you all the best

P.S. Things are looking bright at the moment for me, I'm currently 'no measurable disease' having had surgery but still on treatment to mop up any unseen cells.  

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Bell H
Posted by

Thank you again KT - all noted what you say here re Biopsy.  Great to hear that things are indeed looking bright for you.  Inspiring. x

mummyto3
Posted by

Hi Bell.... you are in a similar situation to me . For the last -6 months I’ve can this ache in my cheeks been back and forth and dr just said sinusitis . Never really caused me a problem wasn’t painful just was aware of it . No other symptoms or anything . Anyway I’ve just had my 3rd baby and at7 weeks ago I I woke up and felt lump in my chin. Just appeared from no where. Anyway go referred me to ultrasound who scanned and said it wa an enlarged lymph node . They suggested leaving. 6 weeks as report didn’t say anything but of course I’ve been on internet and I’ve drive myself insane. So been in to my gp and he’s managed to get me in to see ent in their 2 week cancer clinch like you. It’s I. Tuesday and I am literally a mess. I’ve googled all sorts and think in my head I’ve got sinus cancer and that it’s spread to lymph node . I’m obviously thinking the worse . I cry everyday. I’ve got. 5 year old 3 year olds and a 3 month. I feel sick at the thought I might not hve to leave them with no mummy. These feelings gd by far are like torture the not knowing is horrendous.  

I don’t have any answers but wanted to say totally feel your pain and worry. Fingers crossed for us both. Everyone on here seems so strong and lovely I just don’t know how I can cope if it something acting like normal. 

Hibby keeps talking about things I  futue even something stupid he said about when we do the front of the house I can’t even think to this time next week.... 

Sorry for my big long essay . I feel I’m doing everyone’s head in worrying so like you I’ve posted here as well. 

Bell H
Posted by

Dear mummyto3 - it is lovely to get your message.  Although I wish neither of us had the need to be on here - you will know what I mean.  Firstly, let me say, I am also a Mum to three - although mine are grown up.  As soon as I heard 'cause for concern' my first thoughts were 'I don't want to leave my husband and children'.  It doesn't matter how grown up they are - they are my babies.  So - I can only begin to imagine how you feel with your babies being so young.  My husband is being so supportive and trying to be so upbeat.  We are putting in a new kitchen at the moment and before I was told 'cause for concern' we were having fun choosing what floor covering we would have.  Since CFC (cause for concern) I cannot think about anything like floor coverings as everything I do now I say to myself 'what is the point'.  So I can totally relate to your 'the front of the house'.  I feel I am being selfish - especially when I have not had the diagnosis yet.  Do you feel the same?  So many lovely people on here - all going through their own cancer scares and battles - and here's me 'only' at the stage CFC.  It has been such a traumatic week-end I have gone from feeling positive to negative a dozen times a day.  I have broken down in heartbreaking sobs and also laughed at something on the TV.  Like you I have turned to Dr Google despite telling my self I wouldn't do it any more.  It's addictive and I have convinced myself that the enlarged (and it is big) lymph node is the result of cancer raging through my body.  This is where I then feel selfish when I think about those people who have been diagnosed with Cancer - and what they are going through.  Whereas I am 'just' at the stage - 'is it or isn't it'?  Can you relate to all of this mummyto3?  Oh - I do hope I am helping you as that is my intention - as your message has helped me.  There is one thing I would like to get off my chest.  I had the scan for the lump on my neck done last Thursday evening.  Next morning at 9:30 am I was called in by my GP to tell me the result.  Now - what this very fast summons in to the GP tells me is that already they know something sinister?  Yet surely a scan doesn't tell at that stage it is cancer?  The GP used those words CFC and it is those very words that have been ringing in my ears since Friday morning.  I already had the appt for the ENT tomorrow morning  so I feel I really did not need to know this from the GP with regards to 'there is cause for concern and we feel it is fair to tell you'? All she has done is give me, my husband & children a traumatic week-end.  I knew the lump wasn't normal - lumps don't appear on the neck and stay for no reason without something being up.  I know it could be a number of things - but to be told what I was by the GP and in a quiet gentle tone and to be asked 'do you have someone with you?  Do you have family'?  I felt at that point she was handing me a death sentence.  So here I am - Sunday afternoon dreading what they will find out at the ENT as I have convinced myself with the GP calling me in so quickly and saying what she said and in the tone she used - that I will be told the very worst possible news tomorrow. I even feel guilty about that as the GP was very nice - but the speed of seeing me and what she said after 'just' seeing a scan has caused, I feel, unnecessary anguish.  I knew the lump shouldn't be there and therefore I myself was concerned - hence the visit to the GP in the first place.  But with the GP's input so soon after I now feel nothing but despair.  Dear mummyto3 - when I read what you wrote (quote) . I’m obviously thinking the worse . I cry everyday. I’ve got. 5 year old 3 year olds and a 3 month. I feel sick at the thought I might not hve to leave them with no mummy. These feelings gd by far are like torture the not knowing is horrendous.  (unquote) I want you to know that that is ME right there in those words you wrote.  So believe me - I know the pain in your heart dear mummyto3 - oh how I do.  Like I said, although my children are grown up I love them with all of my heart and don't want to leave them without their Mum.  I really really hope by reading this that I have helped you a little - brought you some comfort in knowing the pain in your heart is my pain too?  Yes - fingers crossed for us both.  I will let you know how I get on tomorrow and rest assured I will be thinking about you on Tuesday.  Sending hugs your way right now.  xxxx

mummyto3
Posted by

Thanks for reply. I know exactly how you are feeling . How old are your children?. 

I feel so numb I feel bad for not paying them attention shouting at them because I’m tired stressed worried etc. I keep thinking what if they say it could be cancer Tuesday I’m meant to come home carry on do the school run the next day take them to their swimming on Wednesday like it’s just another day. I feel I’m in a dark tunnel. I want to curl up and someone to take this all away. 

I am constantly looking. For bumps everywhere on my body symptom spotting for the littlest ache thinking the worse it’s horrendous. If it is cancer then I just hope I can beat it my fear is they say there’s nothing they can do . You hear these horror stories all the time and now o feel like I’m loving it. People are reassuring me saying it’s most likely to be nothing etc as I said to hubby I am sure that’s what people who get diagnosed think. I just have this feeling it’s something. 

I just think this time next week it could be all different our lives turned into chaos. Unknown. My little boy il drop off at school tues morning then to come home to a mummy who future is uncertain. 

LLike you I rationalise and think oh it could be nothing then on other hand I think it has to be cancer otherwise why would they see me. 

Whe. You had your ultrasound did they not explain anything to you? The guy who scanned me explained it was a lymph node that was enlarged but couldn’t see any more in that area. How big is your swelling? Sometime think mine gone smaller then other times think it’s bigger. 

Least you have an early appointment . As an extended family we are having a crappy time . My poor sister her mother in law just got over Brest cancer. Her husband then had leukaemia and her sister in law in in hospital after having a bowel cancer diagnosis but not sure yet of plan treatment etc. My other sister her father in law is currently in hospice terminal. I just think and pray to god that I am not adding into this stress. I am meant to be on maternity leave and am not enjoying it one bit at preset . All I can say is either way cancer sucks . 

Bell H
Posted by

Hi there - I have sent you a private message x