Hello,
I am 22 year old, female and I didn’t visit the doctor often as a child, so the first bloodwork I have at hand ist from 2019 when I was 18 years old. My WBC was low (3.2). The doctor didn’t lose a Word over it.
Over the past years my wbc was balancing between 2.8 (!!) and 4, currently 3.2,there was a time where my rbc tipped at around 3.9 but it recovered, currently 4.2. furthermore my MCV and mchc have been slightly elevated.
I have visited 2 different hematologists and they all downplayed it due to me suffering from depression. One even diagnosed it as a condition in reaction to Something (after 4 years!!)
I am really worried about running around with undiagnosed Myelodysplastic syndrome (MDS) and the worries make IT hard for me to move in with my daily Life.
They refuse to do a BMB, the only thing that gives clarity.
My next appt. is in 2 weeks and I am worried sick.
Any tips on how to deal with that?
Kind regards, Sarah
Furthermore, feel free to ask me questions! This was Just a messy off-my-chest-kinda Post.
@SarahD1702 a great big welcome thanks for posting.
You seem to know so much more about medical diagnosis and tests than I do and you are only 22 yrs old…
You are obviously worried sick, for me it is the waiting and not knowing that makes me so anxious.
What I always do is write down all my questions before appointments and be pleasantly persistently assertive, then I make sure that I have asked everything I would like answers to.
If you feel you need another opinion then perhaps ask for it.
I will ask you questions as you say.
Have you any support?
Where have you got your medical knowledge from?
What is your next appointment for?
Perhaps in the next 2 weeks until your appointment look after and be very kind to yourself and please let us know how you get on.
Hello Erica, thank you for your kind message which actually made me smile. How do you manage to write so encouragingly whithout making false promises?
Thank you for your advice of writing things down
No, I do not have any support. I do not want to worry my family and my mom who knows about IT does not take my issue seriously.
My medical knowledge is all from Google. I wish I would put as much effort in elsewhere! But I cannot stop googling - which drives me nuts, but knowledge per se isn’t bad!
My doctor draw my blood for a thyroid test and made a comment like “bloodwork as we know it from you” instead of “good”. He seems to take my leukopenia for granted at this point. This comment triggered the Myelodysplastic syndrome (MDS) fear again and I promised to myself that THIS TIME i would really dig deep. I begged for a copy at the assistance and wanted to discuss it but I had to schedule a new appointment.
I think that Myelodysplastic syndrome (MDS) is really mean since it can Go undiagnosed for such a long time… furthermore I can relate to many patient stories and the mentioned bloodwork! But it is also a very unknown disease so many people can not understand my fear because they have never heard of it!
The problem is when I am at the hematologist I just want to be comforted and so I often forget my original goal of getting a biopsy to (hopefully) rule out a malignant cause. And when I Hear “Not needed, watch and wait”, I give in so easily because I actually dread the thought of having a biopsy and the anxious waiting time.
I just want clarity!
Thank you for your honest yet empathetic words again. It really meant a lot!
Kind regards, Sarah
Oh, you and Dr Google and keeping on doing something that drives you nuts @SarahD1702
Dr Google gave me a life expectancy of 5-10 years and that was 19 yrs ago (nearly a lifetime for you) and I am still on watch and wait and never had a biopsy and alive and kicking and enjoying my life.
My haematologist says I am more likely to die with my leukaemia than of it, and my GP said I was more likely to get run over by a 65 bus, I give every 65 bus I see a very wide berth.
I think as you say you just want clarity and if you are anything like me you want answers to all the things that are whizzing round in your mind.
Perhaps as you say writing down all those questions might help and it has helped me ensure that I get all those answers.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do not feel this post is flippant, I was where you are 19 yrs ago and my mind was whizzing around like a washing machine, so I relate to so much you say…
If you would like to know anything more about my experiences please do ask and the next 2 weeks are going to feel like a life time so perhaps do things to try and divert yourself and divorce you from Dr Google.
The main thing is to be really kind to yourself.
Please keep posting on here.
Good evening,
your story is truly encouraging! It gave me a glimpse of joy and hope How does it come that they did not need to perform a BMB back when you were diagnosed?
Right now I am not dealing well with the waiting and the uncertainty. Every second when I am Not at work my mind ist occupied with disease and death. I was not the most mentally stable person before this and I find it hard to maintain my routines and pursue goals. (Like my drivers license) I really do not do things I should be doing and I find that my bad qualities (lethargic, scatterbrained) are kicked up a few notches. I am quite absent-minded rn.
Luckily I opened up to my mum who is worried now as well although she tends to brush off my health concerns.
2 weeks really seem like a lot and I most likely won’t have a diagnosis by then.
This was a post about my feelings I cannot cope with rn.
Thanks for your messages, you’ve helped me a lot so far.
Kind regards, Sarah
Hi @SarahD1702 I think that it is not surprising that you cannot concentrate on anything, the waiting is really horrible, fear and anxiety making and seems never ending
Perhaps don’t expect too much of yourself, I give myself just a very small manageable job a day and then it makes me feel that I have achieved something.
When I first saw the consultant I came straight home and wrote my will and funeral music.
Things have moved on so much since my diagnosis.
When you need it and your feelings get too much don’t forget that Blood Cancer UK support line is there for you on 0808 2080 888 and we are here because I have found that sometimes people on here understand me as family and friends cannot.
Be very kind to yourself
Hi @SarahD1702, thank you for taking the time to share this with us and for being honest about how you’re feeling. It sounds as though it’s been an understandably worrying time for you, and it also sounds as though you’re doing your very best under really tough circumstances. Would you find it helpful to let your GP know how you’re feeling? They might be able to support you in the time in-between now and your appointment?
Like Erica said, please don’t hesitate to call us on 0808 2080 888 if you’d like to talk things over, or if picking up the phone feels like too much right now you can email us too (support@bloodcancer.org.uk). We can talk you through preparing for your appointment to make the most out of it, for example.
I’ll send you a direct message, too.
Take good care of yourself, and keep sharing here.
Hello Tanya, thank you for your kind words. I really appreciate that!
I am not sure since I feel my GP does not take me seriously enough. He will probably dismiss IT and I do not know how to approach him properly whithout seeming needy. I feel like the more assertive I am, the more he is going to label me as “mental” since he knows about my depression - and my odd bloodwork as well!
I would really like to properly prepare this appointment, but so far I have been not in the right place to write an e-mail, since I feel I will forget many things!
So I want to know
a) how to rule out a malignant cause
b) when and where this should be done.
Simple and easy! But I am afraid that I will lose confidence/assertiveness when I am in the Doctors Office. All panicky and teary he is Not going to take me seriously!
And another thing that bothers me to no end ist that one hematologist told me my leukopenia was most likely reactive. She knew it has been there for 4 years! She all blamed it on antidepressants which I wasn’t even on 4 years ago. And I told her that! Sorry for raging.
I’d also like to add my welcome to the forum. I totally understand how you feel and how frustrating it is not to know what is the cause of your low white blood cell count. I was diagnosed with Myelodysplastic syndrome (MDS) nearly six years ago, at the age of 53, and I also have issues with my white blood cells (WBC). I had been suffering from low WBC count for several years and was initially detected when I lived in another part of the country. The haematology department there were not concerned as they felt the level was not low enough to be concerned and diagnosed me with an idiopathic neutropenia. When I moved to where I am currently living and started having a run of infections the haematology unit was more proactive and performed a much broader range of tests including a bone marrow biopsy. This was the point the genetic abnormality was detected which led to the Myelodysplastic syndrome (MDS) diagnosis. I’m currently on biweekly filgrastim injections to keep tbe WBC at a reasonable level and am doing really well.
While I can understand why you are worried about the possibility of your low WBC count being a result of Myelodysplastic syndrome (MDS), there could be other reasons for this as well. There are quite a number of things that can impact white blood cell count, including previous infections and some medications, including steroids can lower counts. Myelodysplastic syndrome (MDS) tends to affect older people and is more prevalent in patients who are over 70. This may be one of the reasons your medical team want to rule out other potential causes of your low count, particularly with you being in your 20s. I remember my medical team carried out a lot of investigations prior to performing the bone marrow biopsy as there were a lot of other things that had to be ruled out before considering Myelodysplastic syndrome (MDS) and because of my age (at 53 still relatively young for an Myelodysplastic syndrome (MDS) diagnosis), Myelodysplastic syndrome (MDS) wasn’t the top of the list.
Also I always advise people to be careful about what you find on Google as everyone is different and there can be some very scary things published there. When I was going through diagnosis I made sure I only went to reliable sources such as Blood Cancer U.K. or MacMillan.
It’s important that you talk to people about your concerns. I have found this forum to be very supportive and a safe place to share concerns with caring people who understand what it like going through tests and the worry and uncertainties that come with this. We’re all here to help and I see Erica has also shared some very sound thoughts.
Hello Peter,
thank you for your reply! I really appreciate it!
May I ask you how your WBC was at the time when you noticed it was off? Did it change over time? I feel like our stories have quite some similarities…
But I am really glad to hear that you are doing okay and do not have too much treatment going on.
Unfortunately I have not been on medication when my WBC was first noticed as off.
The problem is that I feel like my medical team does not really bother to find a cause…
I hope that my questions are not too nosy, feel free only to tell me as much as you want to
And thanks for encouraging me to reach Out further.
I hope that your journey continues as smoothly as possible!
Kind regards, Sarah
You’re not being nosy at all. From memory it was below 2 and fluctuated between 1.5 and 3.2 typically. With the treatment it fluctuates between 2.8 and 7 depending on when I have my blood test relative to when I’ve last had a filgrastim injection. Hopefully your medical team will work out what the issue is with your WBC count soon. As I said in my last post feel free to come on here and ask any questions or even if you just want to have a rant. We’ve all been there and everyone here is really supportive.
Hi @SarahD1702 you write such brilliant clear posts on here so just perhaps do the same in your email. I find just ask clear questions
A trick I have to help with my confidence at a medical appointment is to imagine that I have my forum family all round me in the room to support me.
Personally I make sure I have eaten properly before hand as it helps my stamina.
Also I tell the medical people how nervous and panicky I get and how difficult I find it to ask what I need to.
So we will all be there with you and I am sending you some virtual hugs for your pocket for when you need them.
Be kind to yourself.
Hello folks,
my appointment with my GP was earlier this week. He told me that it was most likely “genetic” since my low wbc has been stable for 3 years. Watch and wait is the procedure. He said that a BMB won’t be performed until my counts decline.
He also brushed off my slightly elevated MCV (95.3). That has increased over the last years. And if it was Myelodysplastic syndrome (MDS), (He Said no to calm me down but you never know from bloodwork alone) he told me that I’d be still in the watch and wait stage.
He seemed not worried. Idk how to feel about this. I do not have the stamina to insist on a BMB. Maybe because I am scared of the result?
I do not know what to do. Probably just wait till the next bloodwork has me spiralling.
My mom was unable to accompany me that day.
Hi @SarahD1702 thanks for updating us, what would give you peace of mind, what do you want to do?
I suppose you might await your next bloodwork, might ask for a second opinion or, if it were possible, get a private opinion.
Make a list of your questions and practice being ‘pleasantly assertive’ before your appointment. Perhaps try and take someone with you next time.
Do you feel it might be helpful to talk to your GP about your thoughts and feelings and see if they can suggest anything. Counselling helped me, but it is not for everyone. Blood Cancer UK also have some handy hint, some of which, I have found helpful. Blood cancer: mind and emotions | Blood Cancer UK
As I think I have said before I have never had a bone marrow biopsy and I have been on watch and wait for 19 yrs and my blood tests have definitely fluctuated in that time. I still get anxious before medical tests, results and appointments.
Please keep posting, and the Blood Cancer UK support line is there for you on 0808 2080 888, it must be so tough for you at the moment. Be kind to yourself.
Thanks for your update. I understand your frustration and I know how difficult it can be to challenge doctors about getting tests and interpretation of results. Erica has given some very good advice and particularly the suggestion about writing down questions in advance of your appointments.
I would however take a couple of positives from your meeting with your doctor. Firstly, they are right that for lower risk Myelodysplastic syndrome (MDS), watch and wait is the first line of support. They are aware of your low blood counts and it sounds like they are monitoring you so if anything changes they can intervene appropriately. While a BMB may give a more definitive diagnosis, it is not a procedure that medical teams want to put patients through unless they feel it is absolutely necessary, and having had on I understand why.
It is important to try and stay positive. While keeping in touch with your medial team try not to worry and find time to do things you enjoy so you can focus on something else. In the early stage of my diagnosis I found this really helped me. In particular I started walking a lot and if possible I combined my walks with a chance to get back to my photography. I’ve continued to do this and when feeling under the weather both physically and mentally, I’ve found it a great help (from my fitness tracker I’ve found I average 11 km a day). Also remember there is the Blood Cancer U.K. helpline and the forum if you need to talk or ask any questions.
Hey guys,
I haven’t let heard from myself for a long time. In the meantime I was able to distract myself well. Unfortunately, my father has passed away in the meantime which made me think about death and cancer a lot, naturally.
Right now I am postponing contacting a hematologist and try to tell myself that my GP has everything unser control. But I am not sure whether this is an irresponsible and avoidant thing to do!
You guys gave me very good advice (preparing myself, being pleasantly assertive) but for some reason I fail ( I try to not be too hard on myself, but it’s hard to find another word) to put them into action.
Although I am not the happiest and Most life-loving person around, the thought of dying prematurely really scares me a lot. I think it is about the loss of control. I try to make deals with God to let me live to 70 at least, after that he is free to take me! Although I am a Christian, I know that that’s not how it works. I believe that He decides when it’s my time to go. And that scares me!
I have an older half sister who keeps me in check a lot, especially in recent times. She is a master of being pleasantly assertive and by that was able to speed up office processes with phone calls a lot. I feel like I could never.
However, I haven’t opened up to her about this whole low white blood count issue because a) I do not want to worry her since I know about her hypochondriac tendencies and b) I somehow fear the diagnosis although living in uncertainty is also not good.
This was just a little ramble although I know I have to finally put things into action. I just let my thoughts distract me and remain passive, unfortunately.
I hope that you guys are doing okay so far! This community is really amazing and I have never visited a medical forum like this.
Hi @SarahD1702 perhaps there is no need to be hard on yourself as I can really understand your thoughts and feelings too.
I am really sorry that your father passed away and I also found that loosing a parent really brings up so many thoughts and feelings, including my own mortality.
Hey, I am 73 yrs old and want a good few more years yet, please.
It is a dilemma isn’t it, is it worse living with the not knowing or the knowing???
If you do put things into action perhaps your half sister would go to appointments with you or you could imagine you had all us forum buddies with you to help you.
Please do keep us posted what you decide to do and how you are.
Take care
Evening @SarahD1702 along with everyone else I also send you my condolences. It is overwhelming , I know too well the pain of losing a parent , I lost my Dad when I was just 26 , I’m 52 now and my children are 24 and 27 like you it’s a real trigger. I worry that they are now the age I was when I lost my Dad so can imagine all too well what you are feeling right now.
This is one of the reasons why I am sure to monitor my lymphoma. Prevention is always better than the cure as they say.
Do think about looking after yourself and speaking with your medical team - speaking again from experience I have a new lump currently like you my Dr is not overly concerned wants to continue to monitor it , meanwhile I’m worrying myself senseless.
So having learnt from all the amazing advice on this forum I asserted myself and explained that not knowing was causing me a lot of anxiety, so it was scanned again and will be biopsied too next week.
I already feel a whole lot better just knowing it’s being looked into a little more , even if the outcome is the same.
I that think we all worry that Drs are different people , but do you know as soon as I explained what I would like and why , my Dr could not have been more helpful and she understood completely why I needed more information. Give it a go - Take that leap, write down all your questions and concerns and go armed to your appointment with what you would like to know. Like me the outcome could well be exactly the same but you will at least know and understand all the things that have been bothering you.
Do let us know how you are and keep us updated- thinking of you.
Oh @Jules what an absolutely brilliant, sensible post and I loved the way that you explained that the not knowing was causing you a lot of anxiety instead of barging in and saying I want.
Please do let us know how you get on and be kind to yourself
