Advice needed: I have been on watch and wait... - CLL Support

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Advice needed


I have been on watch and wait since my diagnosis in 2012

I was sent to see a heamotologist who advised blood tests every 6 months and was discharged due to my blood results being sent electronically.

I asked to be referred back to her due to fatigue and weight loss, the weight loss wasn't drastic but I had dropped a dress size and am going through the menopause.

She checked me over and sent me for a colonoscopy due to my symptoms, everything was fine so I was again discharged.

I decided to ask at the surgery if I could be referred to a CLL specialist as my weight is still a concern for me as well as the chronic fatigue.

The doctor has just telephoned me and was very abrupt when I asked for the second opinion. He has refused and said i needed to visit the surgery to see a doctor.

He has really upset me with his abrupt attitude. There was no reason why he had to speak to me the way he did.

I feel very confused and haven't any fight in me due to the fatigue.

Have I been a little inconsiderate in my request

Please advice needed for a amateur CLL'r who isn't a very bright spark.

I appreciate your honesty



52 Replies

I feel that I am actually able to answer this as I am also an amateur CLL'er and definitely not the sharpest knife in the box! 😀

You are entitled to ask for a second opinion, that I believe is your right. It may not happen overnight if there is no urgency but you will get an appointment. My GP said that any Dr worth his salt would not be offended by this request,

This is your life, you need the confidence that comes with having a Dr that you trust and believe in.


jan1780 in reply to Peggy4

Thanks Peggy

Glad that I am not the only amateur CLL'r

I certainly am a bit dim lol

I hate going to the doctors as I feel I am wasting their time and never feel like I get any support.

I have been thinking about changing for a while now.

Appreciate your advice

BellaBee10 in reply to jan1780

I changed GP. The one I had for years was nice enough but as much use as a chocolate tea pot. He'd missed blood test reports that said I needed follow for a long time. After I was diagnosed, when I said didn't feel rough all the time, he suggested I was bi-polar. When my neck was swollen and my glands were up before I was diagnosed, he diagnosed swollen glands and ignored the blood test result that said smudged cells, high lymphs, required follow up. When I eventually got called in to discuss 'nothing to worry about results' he asked how could he help me, yawning, when I said I didn't know and they'd asked me to come in, he looked at the screen and said oh yes, you have chronic leukaemia, nothing to worry about. When I asked him to write it down, he said I didn't need to know and he'd refer me. When I insisted he wrote CLL on a post it, and that was it, fastest appointment ever. I went home, asked my next door neighbour to google because I was too scared and ran a conf calll shaking. My neighbour came over looking shaky with a print out re incurable blood cancer. I called the surgery and ended up with a referral mentioning my acute stress reaction. I stayed with them until about round 2 then moved. What a massive difference. My new GP, well the whole practice, seem to have my back and I'm getting used to not doing this on my own. I'd suggest your GP has blown it and move. Life's is too short for bullies and chocolate tea pots.

The GP did say sorry so that was fair enough and I didn't put in a formal complaint.

Sounds familiar, take care, l was told it's the good cancer ♋ no such thing xxx

jan1780 in reply to sun_flower

I'm with you on that one

vinnet in reply to Peggy4

Ditto Peggy.

I am only 5 month old cll and have sought second opinion already..

I went for three CLL specialist second opinions.

I have included this link if your Uk. NHS and information on second opinions.

Good luck and if you don't get one, I would change your doctor.

I have used PALS before and they are amazing and get things sorted!

jan1780 in reply to serendipity1

Thankyou serendipity

I appreciate your reply and thankyou for your positive advice

So much appreciated


Hi Jan,

What a miserable situation for the GP to have put you in when you're only asking for your absolute right to see a haematologist. I've no idea why you've been discharged from haematological care unless your CLL was deemed to be very indolent and able to be managed by your GP. Peggy is absolutely right. You have a right to have your concerns addressed. Fatigue and weight loss are called B symptoms and can be due to the CLL. I understand you also have an under-active thyroid but whatever is causing your debilitating tiredness and weight loss, needs investigating.

Make an appointment with your GP and be calm but firm. Say that you want a referral to a haematologist because you're experiencing symptoms you believe a CLL specialist could assist you with. If the doctor refuses, ask on what grounds they are refusing and then insist on the referral. Ask to see a different haematologist if necessary as I've little confidence in the first one from what you've told us.

Please don't put yourself down or believe you're in the wrong here Jan. Stand firm and make sure you receive the level of care and oversight you're entitled to.

Let us know how it goes. Best wishes,


jan1780 in reply to Newdawn

Thankyou Newdawn

I appreciate your sound advice

I will make sure I am proactive and confident when I visit the doctor tomorrow

Thanks again and I will let you know how I get on

Hi Jan,

I'm afraid there are a few bullies in the system and you're more likely to cop it when you're down.

Please don't take it to heart or let it knock your confidence. You feel rough and want to know why, and what you can do about it. It doesn't sound unreasonable to me.

I can imagine how low you feel about this, it's hard enough for some of us to ask for help.

Keep going.


jan1780 in reply to BellaBee10

Thanks Nic

I am a sensitive soul but didn't deserve the doctors abrupt attitude.

I feel so blessed to be a part of this community, you wouldn't believe how much strength you are all giving me

Thankyou from the bottom of my heart

BellaBee10 in reply to jan1780

You are right, you do not deserve to feel like that. And right again about this group. Get that 2nd opinion. I'm so sorry you were made to feel like that.

jan1780 in reply to BellaBee10

I am so very lucky that I have all your support.

Thankyou all for your time, you have all made me feel so much better.

You have given me hope


My sister was exhausted all the time in menopause. Turned out her menopause symptoms were masking her thyroid issues. Are you on synthroid or anything like that. Maybe it is your CLL but I would ask to get my thyroid checked/rechecked too. Don't be walked on. You know you don't feel up to snuff and u should be able to know why. I presume you courteously asked for a second opinion and you should have been shown the same courtesy in either a referral or other investigation based on your symptoms. It is not normal to go down a dress size if u are eating the same way.

jan1780 in reply to ap64

Hello ap64

I have been on thyroxine now for over a year and admittedly my fatigue has been halved but it still is a big problem.

I have tried different mechanism to relieve it but it never ever goes away. I cope quite well and then it tends to hit me like a brick and knock me off my feet.

Courteous is my middle name lol

Seriously I always treat and speak to people just the way I would expect to be treated, he took me by surprise. His whole attitude was disgraceful.

At times I may be responsible for not being firm enough but never for being rude, all I can think is he must have had a bad day. No excuse though.

Their listening skills are next to none but I feel more confident in my attempt tomorrow.

Thankyou for your reply, it is very much appreciated

wroxham-gb in reply to jan1780

Best wishes for tomorrow Jan. Stay firm. Please let us know how you get on.


jan1780 in reply to wroxham-gb

Thankyou Sue

I will stay firm, thanks to all of you

I don't feel alone now

You are all wonderful

I'll let you know how I get on



ap64 in reply to jan1780

Took my sister lots of tries to get her thyroid thing under good control. Good luck with next appointment. I had presumed u were courteous and I was right and the doctor was insensitive.

jan1780 in reply to ap64

It took the doctors 7 months to diagnose my thyroid problem. The test they did came back as normal but I persisted with my visits, almost crawling to the surgery.

A friend of mine had seen a program on tv about thyroid problems and the different blood tests that needed to be ruled out.

I approached the doctor with this information and he did the second blood test which came back with the diagnosis

And to think they were going to diagnose me with M.E.

My persistence proved them wrong but I so thought I was losing the plot.

Thanks so much

melania in reply to jan1780

Cll and hashimoto my case. I rest and sleep a lot to cope. Worrying makes it worse so don't worry and keep strong

Hi Jan - I agree with every one here ! In the mean time I've sent you a message 🙋🏻 X

Hi Jan

Have you been getting blood tests every 3 months, and that is now going to be blood tests every 6 months ?

You have every right in the world to ask for another opinion ... I'm lucky to have a good haematologist, and I explained that if/when it is time for treatment that I would want the opinion of a CLL specialist to make sure that I would be exploring the best way forward.

She has no problem with that as it makes good sense.

If you are moving onto blood tests every 6 months, that would be a good sign ... I followed the same path which became every 12 months.

I do still have problems with fatigue even though my blood counts are acceptable, though it is not uncommon for CLL'rs on here to be told that their fatigue is not CLL related because of their blood counts.

If that is the case then ask them to visit this site ... and I'll set Mrs ygtgo loose.

" Have I been a little inconsiderate in my request " ....... NO !


jan1780 in reply to ygtgo

That bought a smile to my face

My blood tests have always been every 6 months since diagnosis

My heamotologist says the fatigue is nothing to do with CLL, so there wouldn't be any point in going back to see her.

That's exactly what the doctor said on thephone.....your bloods are all ok so there can't be nothing wrong. Not his exact words but that's what he meant.

But I know my own body and something isn't right,

I would love to let the Dr loose on this site lol

Thanks for your support


Hi Jan,

A bit late to the party I'm afraid, as I only just found your post, so apologies.

I keep all my blood results on a spreadsheet, when I first asked for them my consultant was very clear that whilst the blood results a useful in understanding what is happening he treats the person not the results. Your doctor should be treating your symptoms not just saying blood results normal.

Fatigue is recognised as a CLL symptom. Not all of us have it, but several do. Luckily, at present I'm not one.


Thankyou Rob

You are still more than welcome to the party

Something I did make clear to the rude doctor over the phone.

But I come across it a lot, one doctor even said to me, "did you think I could perform a miracle".

Oh well, let's just enjoy the party😊

Appreciate you gate crashing 😊

melania in reply to jan1780

Hi. I have CLL and Hashimoto so my fatigue is a lot...I sleep 10 hrs and rest when I need to. Good luck and don't worry, just rest more

jan1780 in reply to melania

Hope I don't appear rude but what is hashimoto?

I do rest after my working day which is only part time. I was so very active and the change has certainly got to me.

I try very hard to remain positive but at times it becomes ovewhelming.

Thanks for your advice and your time

It is so very much appreciated


melania in reply to jan1780

Hi, Hashimoto is an autoimmune thyroid disease which brings great fatigue! Plus the CLL, imagine! I must programm everything and do one thing a day! Anyway I manage by forcing myself, but I do rest a lot which helps. Hope all goes well for all us humans! Stay strong, don't worry plz

jan1780 in reply to melania

So sorry to hear that, must be terrible and here's me moaning, I almost feel ashamed now.

I will not worry and take care of yourself and make sure you get plenty of rest

Best wishes

melania in reply to jan1780

Thanks. I'm on year 13 watch and weight! And Hashi since high school! So I'm used to it by now and have stopped worrying.

jan1780 in reply to melania


I'll certainly do the same


Fatigue can not only be a symptom of CLL but one of the possible indications for treatment according to the iwCLL guidelines:

"6. Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs:

a. Unintentional weight loss of 10% or more within the previous 6 months;

b. significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities);

c. fevers higher than 100.5°F or 38.0°C for 2 or more weeks without other evidence of infection; or

d. night sweats for more than 1 month without evidence of infection."

I started treatment solely on the basis of fatigue less than 3 months ago and I have had significant improvement in my fatigue. I really did not realize how tired I really was. Treatment has made a huge difference in my quality of life. You definitely need a second opinion.

Some doctors were told at 'doctor school' about blood counts ... and what they mean.

... either those who didn't go to 'doctor school' are delusional and are just reacting to the 'cancer thing' ... OR ...

us poor ignorant peasants are telling the truth and their school books are out of date ... the reality is that some doctors just don't really listen ....

My son when he was young followed my love of astronomy ... he was delighted when his Primary school teacher announced that they were going to do astronomy as a subject.

At the parent/teacher night she informed me that she would state a fact that say ... Mars has one moon ... and then look over to my son ... "no miss ... two moons" ... this went on for weeks.

I had attended the same school ... she was reading about astronomy from the same books as I had read from the school library ...

Your doctors may well be right in what they say ... they were taught at doctor school ... sadly their books on blood counts should sit on the out of date shelf.

My blood counts are what they are ... my at times crippling fatigue is all too real ... I'm lucky in that my medical team listens and believes me ...

... or maybe they just have a more up to date book on fatigue for CLL patients.

If I am 'making up' my fatigue ... boy, I must have some imagination !

... " I know my own body " ...yes you do.




Sounds as though you have been through a horrendous time, as if it isn't bad enough getting the diagnosis and then we have a battle on our hands trying to convince a chocolate teapot.

I feel for you

In the past I have felt like I was going insane, even wondered if I was imagining it, but I wasn't.

Life is hard enough as it is.

I am happy that you have the support you deserve now, makes a huge difference.

Getting a little anxious, my appt at 10.15 and I don't know what to expect. Who would have thought the caring profession could make you feel this way.

Appreciate your reply

I'll let you know how I get on

wroxham-gb in reply to jan1780

Just imagine us all behind you.xx

jan1780 in reply to wroxham-gb

I feel as though you all are and it brings great comfort

Thankyou toThankful to you all xx

If in the UK you are entitled to a second opinion. I had a series of appointments with a haematologist who refused to let me have my blood results. Abrupt and plain rude. I also was losing weight and had no energy and was on WandW. I use an unfailingly lovely approach and record conversations in a note book with dates. I also always have someone sensible with me. I had a gentle chat with patient services at the hospital, more in sorrow than anger. Soon after that a second opinion was provided by a CLL specialist, whose team are delightful, their approach professional yet friendly. I did eventually need treatment. Feeling confident in your team is so important. Incidentally I later found that my experience was the norm for this doctor... there are lovely, supportive teams out there and finding one makes a huge difference... I wish you well on your journey.

jan1780 in reply to abikaasa

Thankyou so much

And I am happy that you have found a supportive team

I will eventually , if nothing else I have drive

So much of this echoes my own experience. I had a bit of a blow-out at my CLL hospital appointment 6 months ago as I really felt disrespected and patronized by the (male) doctor. It was less than a month after an emergency admission for a stroke bleed and I admit that I was in a very anxious state.

I asked for a formal meeting with my specialist nurse and made my concerns clear and requested to see another specific (female) Consultant the next time. I also rang a week before to confirm this and repeated my request at the desk. When I was called, the nurse informed me that I would be seeing a male practitioner. I was returned to reception and my file was re-assigned.

The woman Consultant was brisk and seemed slightly put out, but I feel much more comfortable in her care and she was very positive about my results. She asked me why I had asked to change doctors and I'm afraid I fudged it by saying I would rather see a woman, but she got the message.

I did get the impression that my file has been marked as "nut job" and I am pleased that she did discuss mental health and anti-depressants when I said my fatigue varies from day to day. However like others, I suspect that she may have labelled me as bipolar, when my experience is that the CLL (and is my case post brain haemorrhage) fatigue feels very different from the tiredness of depression.

All in all, I am glad I persisted with my request to change who I see and feel much more optimistic as a result. Recent research has shown how health outcomes are improved by patients feeling confident about their medical team and having access to a variety of therapies. I have been seeing a counsellor at the hospital since my diagnosis and she has been a constant support through this and I feel that our sessions have been much more help to me than antidepressants.

It can be embarrassing to "rock the boat" but it's worth it!

jan1780 in reply to otonal

Sat in the waiting room now feeling like a lamb to slaughter

I totally agree, support makes such a huge difference, I truely believe our well being is paramount.

Sorry you have been through the mill but happy you have comfort now.

It is lovely to hear that there can be a positive outcome and I am determined to be where you are even if I have to rock the boat

Thankyou for your advice

You have every right to a second opinion. Finding a doctor whom you can trust - and with whom you feel comfortable is very important. I will keep you in my prayers - along with all the others on this website. :-)

jan1780 in reply to jchays1


You have all been a God send

Words fail me, all I know is Your arms have embraced me and I feel honoured

Hi Jan, I am on W&W since 2015 and it does worry me that symptoms might not get picked up as something to do with CLL. I have an ongoing stomach problem and the GP seems to think I should just take Omeprazole. I am just going to mention it to my specialist again when I have my next bloods with Haematology. I find if your bloods are at good levels then they just seem to dismiss other symptoms.

If it goes on any longer though I may ask to see a CLL specialist. I think you should just do what you think is right for you. I wish you all the best and hope you get the attention you need. You shouldn't have to be suffering. x

jan1780 in reply to janloveslife

I have found that too, the doctors just look at the bloods and if they are ok then they dismiss your concerns.

I can't blame you for wanting to see a specialist and I'll let you know how I get on and it might help your decision

Don't give up

Read my profile as to why you need a second opinion with a CLL specialist.

Thankyou Southfloridalady

Appreciate that

My pleasure.

I cannot provide a diagnosis as I am not a doctor and neither am I aware of the full details of your condition. That said, I remember reading a post by the late Professor Terry Hamblin where he cautioned on blaming CLL for a symptom even though the symptom may be one of the B symptoms. Fatigue was one of the examples he gave. There are 1001 medical conditions that can cause fatigue. Indeed, it is one of the most common complaints GPs hear from their patients. I grant you that experiencing weight loss and fatigue in tandem is suggestive of CLL however the same combination of symptoms can also be caused by stress. If your Absolute Lymphocyte Count is remaining more or less steady, your red blood cells and platelets are OK, you aren't experiencing night sweats and your lymph nodes aren't growing, then the symptoms may be caused by something unrelated to CLL. Menopause and fatigue, for example, commonly go hand in hand.

If you are worried, definitely seek out a second opinion. Be aggressive if necessary. If you don't have the energy, find someone to advocate for you. Doctors are not always right and their arrogance can be astounding at times.

jan1780 in reply to Curious12

You have certainly given me more of an explanation than any GP has given me, my bloods look ok, I have had the drenching sweats but only on a couple of occasions and my lymph nodes were enlarged in my right groin but have now shrunk.

I suppose i find it difficult with me being so active and fit but it seems to have come and is getting worse over time.

I went up a dress size with the menopause and the weight was still going up and then all of a sudden it started dropping off, nothing to drastic and not suddenly but I dropped that dress size without even trying, in fact I ate much more cake purposely to see if the weight went on.

Enjoyed the experiment though😊

I don't worry unnecessarily over it but feel there is something not right so feel that seeing a CLL specialist will put me straight.

Thanks for your good advice and appreciate it very much

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