been in remission since 2019 .
last week i found a lump very small under the armpit and inch away from side of left breast ,contacted oncology team ,instructed to get blood test done which i did next day the tuesday, 3 days on not heard back from them yet as promised, guessing it takes a while for them to see blood result.
just worried what they will do next even if bloods are okay ,it should be looked at shouldnt it ? dont know how long things take these days with how things are with waiting times.starting to worry a bit.
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Hu @skye great to hear from you although it must be a worrying time for you, I hate waiting and not knowing.
As for knowing how long things take these days. I think it depends on where you live, staff holidays, staff sickness, staff strikes etc, etc
Do you have a specialist nurse contact or whoever ordered the blood tests who you might contact in a couple of days. My reason for saying that is that you were told that the results would be back in 3 days.
As to what will be the next stage it will perhaps depend on your medical team and your medical history.
Perhaps write down all the questions you might want to ask so you are prepared for your next appointment.
Please do let us know how you get on.
Be kind and look after yourself
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Sorry you’re going through this worrying time @skye. Have you heard back from them yet? If not, we’d encourage you to give them a call, as Erica suggested. At least then even if they don’t have the results they might be able to give you an idea of how much longer you might have to wait, and you can talk through what your next steps might be. Have you been in for a face to face check up yet for them to assess the lump?
Your clinical team will be best placed to talk this through with you, as any next steps around investigating these symptoms, will be decided in the context of your individual circumstances and medical history. As you may know, sometimes a lymph node might enlarge due to infection or as an inflammatory reaction, and if your clinical team feel this might be the case after assessing you, they may monitor the situation and review again in a couple of weeks. Or they may assess the lump and decide that a scan might be the next best step. Please don’t hesitate to give our support line a call if you want to talk things through with us, or if we can support you in any way.
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Hi @skye
Have you heard back from anyone?
Not all lumps and bumps are lymphoma as I can testify too.
I also had Non-Hodgkin lymphoma (NHL) over 5 years ago the new lumps appeared in my neck are looking like an autoimmune condition not lymphoma.
So of course it’s impossible not to be concerned ( I was) I just wanted to say there can be a thousand other explanations.
Do let us know how you are getting on.
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Hello, thankyou for your messages, I did see a consultant for lump under arm they could not feel it, I could. It was uncomfortable in room felt like they did not believe me. It was decided to keep an eye on it see if it gets any bigger. Hopefull it’s a lymph node that comes n goes or due to some infection.last week had a mamogramme no sign of cancer that’s good but can it still be missed. It was first time been back in oncology, it had more of an affect on me than thought it would, I just crumbled inside.
Have usual blood test and appointment in April see how that is then.
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Oh @skye I am so sorry it is a horrible feeling not to be believed, yes, do keep an eye on your lump, but, and this is non medical, try not to obsess over it and prod and poke it (as I might well do) as if I were an innocent lymph node I would not be happy and get angry, literally.
Wow. what a powerful way of putting it ‘crumbling inside’ oh, I know that feeling so well and it stems from my childhood.
Really look after and be kind to yourself and please do keep posting how you are getting on.
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Hello just thought i would update on my lump i found , is seems to have gone and have had next blood test its not showing any problem so hopefully alls okay for now , wish the rest of my life was . When you dont have close suport ,that someone who listens and cares ,who has your back ,can give a hug, without being opinionated ,dismissive, that can leave you feeling like a week useless less of a person , its hard when you feel so fragile to rise above it.
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Hi @skye that is really good news.
Yes, it must be really hard not having close support, yes, sometimes you just feel you need support from someone and a hug.
I needed some talking therapy, if you feel it might help you perhaps your GP is a starting point.
Be ever so kind to yourself, it takes a lot of courage to post on here and be really honest.
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Hello,
NHFL has relapsed. A shock. Had symptoms that i thought was noro virus but was not going away ,saw consultant have had ultra sound, ct scan which i have seen, have new bulky mesentric nodal desease and few small volume retroperitoneal adenopathy also small right paravertebral adenopathy. Had pet scan last week and have biopsy next friday to see if low grade still or high grade and if theres small bowel involvement. They already say will need more treatment ,various options depends on all results.
Mentally re visited what treatment was like last time its scary and with even less support this time round what hits home is just how alone i feel .
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Oh @skye You are part of our forum supportive family so you are never alone on here, however I know that does not mean that you will not feel alone at home.
Yes, treatment must feel scary to you.
The Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps write down all your fears, questions and practicalities for your specialist nurse or medical teams.
Be ever so kind to yourself, you have a lot going on.
Please do keep posting how you are doing.
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Hello,
had biopsy week ago took 2 biopsies and had reaction minutes after chest pain and tacicardic ,faint ,sick ,scary.
they said the mass is 6/7 cm ,I was shocked by that.
they said it would be up to 4 weeks wait for biopsy result, that’s a long time don’t know if its still slow growing or now fast which will determine which treatment I have.As days go by the gloom sets in. trying to keep busy and distracted .had some work on my garden done was exciting to see it transformed ,so that at least I can sit outside in a nice place if I feel ill from chemotherapy. have to say I am not looking forward to the treatment sessions the environment you are sat in is pretty bleak no windows to see out of or see the sky just blank walls , uncomfortable chairs ,cannot lie down at all , nothing to focus on for distraction.
was hoping to sell my house to move nearer to another hospital where I know its massively different ,but house not sold ,now cancer is back it would be too much to deal with at same time. not sure how I can mentally deal with going back in that hospital treatment area as well .and on my own this time.feel tearful.
sorry I tend to ramble in my texts .
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@skye you are certainly not rambling in your text, yes, you have a lot going on.
That must have been scary after your biopsy.
Yes, I have recently had to await 5 weeks for a biopsy result of another part of me.
It cannot be easy with the gloom setting in, yes I find keeping busy and distracting myself is a good idea.
I am glad your garden has been transformed, I really realised after reading your post how important your garden and the outside is to you.
Yes, unfortunately hospital rooms are sometimes not known for their decor or views out the windows.
What I do is to go into my mind and in my case remember a lovely park or towpath walk I go on, perhaps you might imagine you are sitting in your garden. Nobody can take my memories away from me.
I also take my kindle or an easy read book and plug my music in my ears and I am in my own little world.
Personally I think you are very sensible to put your house move on hold, I find moving house is stressful.
That hospital environment obviously represents a lot to you.
You will metaphorically have your forum family around you.
Be very kind to yourself and really look after yourself and I find telling the nursing staff how I am feeling helps me.
Please do keep posting how you are
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Hi @skye,
Sorry to hear what a difficult time you are having and the frightening reaction you had with your biopsy. It is completely understandable that you are feeling shocked and tearful, you have a lot to deal with and the waiting and not knowing is extremely hard.
When blood cancer relapses, it is common to feel like you cannot mentally go through it all again especially when you had a tough time with treatment before. Have you got a CNS that you could talk to about how you are feeling and the effect it is having on you? I would encourage you to speak with them as it is important that they are aware. They can refer you to psychological support within the hospital which many people find really helpful.
I have also linked our pages on mind and emotions here which might be helpful Blood Cancer UK Mind and Emotions
Please know you are not alone and we are all here to help and support you.
Let us know how you get on.
Take care
Fiona (support services nurse)
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hi thank you for reply.
yes the waiting does not help when its bad enough having cancer. I try not to but worse case scenarios keep creeping in to my thoughts .
yes will take my tablet with me will put a game on it to play.
it would help distract if oncology had a tv screen even if it was subtitles only.
its a long time to sit in a chair with no where to walk about a little bit now n then and a visit to the loo does not quite cut it .
the environments that I am in can have an affect on me , a feeling of being trapped with no control to remove myself .
what is the point of designated nurse that has no time to give even when just given bad news.
when I was told cancer back I was dazed ,was taken to McMillan plonked with a person ,I started shaking ,tears came the person did not know what to do looked horrified and just shoved leaflets at me ,I left in tears n shaky.i was on my own. embarrassed I found an empty area to compose before leaving.
felt like a number a no one in a cattle market .
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Hi update .had my results , not sounding good cancer is now in 8 places in body ,shocked.
Told chemo be in 3 to 4 weeks but now date is nearer 8 weeks to start.on steroids ect made me feel amazing and to be tapered down over 5 weeks to 1 a day currently at 4 a day noticed mood drop . I went to mcmillan before and after given result they were lovely it helped.
Today sunday i really needed to talk to someone ,i dreamt i was lying in a bed at end of life care waiting to die ,lots tears this morning had big affect on me , person i reached out to was not there for me iether its a lonely sad place to be right now.feel little angry people too wrapped up in thier selves to bother about others, like no one cares. People Too busy shopping too busy doing things giving 20 mins of thier time to talk listen is too much of an inconvieneance .maybe i feel sorry for myself . Up to now i have done really well to prepare myself mentally for treatment again and to go back into awfull treatment area no windows blank walls . Will go into mcmillan again talk to someone this week the need is great right now.
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Dear @skye,
Thank you for updating us. I am sorry to hear this about your results and how you’ve been feeling this weekend. It is completely understandable that you are feeling this way. Steroids are an important part of treatment for lymphoma but they can effect your mood and emotions. Do keep your treating team updated on how you coping and feeling as it’s important they’re aware so they know how best to support you. Have you been told which treatment you will be receiving?
Please know you are not alone and we would be very happy to support you and talk things through with to you. Our free nursing support line is open until 4pm today on 0808 2080 888.
Take care
Fiona (support service nurse)
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Hello, thankyou for your response.
i had dream again was at end of life in my bed in the last minute of life dieing.
Very grim dark place to be at this stage.
I recognised i needed to speak to someone and felt unable to contact team again as had no response to message i sent about a different concern . . i went to mc millan talked to lovely person ,will asess for some talking therapy , and they can help communicate with team too . Ifelt supported today, i reached out for help i need it this time round. Also looked at some other things can attend may be of help. Felt like i was taking some control back by going. Hoping as steroids drop my mood does not get too bad .
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Dear @skye,
That’s good that you recognised that you needed to talk to someone and received the help and support you needed. Many people with blood cancer say they find talking therapy and counselling really helpful.
If you’re struggling to cope and ever needed someone to talk to someone urgently, you can contact the Samaritans – Their 24 hour helpline is free and confidential, and you can talk about anything that’s concerning you – it doesn’t just have to be about blood cancer or your health.
Please keep us posted on how you are getting on.
Take care
Fiona (support services nurse)
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Hello,
since last post I came down from the pre chemo steroids and I had all the anxiety low mood back and night sweats. keep falling asleep in afternoon after eating then feel very rough for it, not normal for me .Unfortunately the talking therapy referred for is a 16 week wait , hard when need it now. chemo starts this Tuesday .I have done as much pre preparing as I can, from bag of stuff to take and clothes to wear ,everything in house cleaned organised ready, now chemo is a day away but feel very tearful scared and alone .last day of freedom tomorow and it feels like no one cares and I should be doing something good with someone but I am not .,I am feeling sorry for myself had a lot of stress dealing with too many other things at same time, my mum went into care home too, very sad. things feel out of kilter falling apart and I broke my glasses arranged replacement in time for chemo but they put wrong lenses in so no glasses .
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Oh @skye I really feel for you and thanks so much for your really honest post of how your stress and how it is and feels for you.
You have had a lot going on and your mum going into a care home is massive on it’s own.
The final straw of course is your glasses.
You have done brilliantly doing your pre planning, which perhaps keeps your thoughts and feelings occupied, and now they can come flooding out on the scary bit of the unknown.
It is interesting that you say you feel tearful, scared and alone and I also do if I go into hospital.
You will have lots to process when you get your talking therapy.
You have your forum family here that really understand what you are going through as others find so hard to.
Please do keep posting when you can and sending you virtual hugs