I have been waiting for a Lymphona diagnosis since March. I had an EBUS in March which took 4 weeks to comeback inconclusive. I then had an biopsy in my mediastinal to the lymph node that lite up the brightest in my pet scan it was horrible 3 weeks later that has comeback with no viable tissue. This week I am having an ultrasound biopsy along my collarbone or in my groin. I am constantly chasing haematology no one gives me any results I have to ring to find anything out I feel emotionally and physically broken!!
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Oh @Pipbon22 you must feel emotionally and physically broken, it is definitely a very emotional time and that is exhausting, I think.
Yes, often test results do take time and are sometimes repeated when a clear diagnosis is being looked for, and since I was diagnosed there has been a lot of waiting around and not knowing and that seems never ending.
I have also recently had a test and I await another one in a couple of weeks and my follow up appointment to discuss the results is at the end of September for another condition that I also have.
When I saw the consultant for this other condition originally he said he was booked up for 18 mths for face to face appointments, and I thought to myself perhaps haematology is not that bad.
If you have a specialist nurse contact they are often your best contact and also check with them when it might be advisable for you to ring again.
Perhaps you might talk to your GP and tell them how you are feeling and they might be helpful in different ways
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
I was told medical departments are sometimes not allowed to give patient medical information out over the phone as they cannot be certain who they are talking to.
I know I cannot talk as I am not a ‘patient patient’, this are just my experiences
The Blood Cancer UK support line number is 0808 2080 888 and they are lovely if you need a chat.
We are also there for you to be able to say how it really is for you.
Please do keep us updated and be very kind to yourself, waiting is horrible
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Hi @Pipbon22.
Thank you for posting and sharing what you have been going on for you. So much has happened and it is not surprising that you feel emotionally and physically drained.
@Erica has given you some great advice.
So much of our journeys - whatever the type of blood cancer result in waiting. I think it’s one of the toughest part of the journey because you just want to know what’s happening and get it dealt with.
When I was diagnosed with follicular lymphoma I only had one biopsy so coming up to your third must be extremely difficult.
I hope you find some support in the forum, and use the helpline if you need to.
Have you got a specialist nurse you can contact?
Please keep us updated on how you are doing and how the biopsy goes. Sending special wishes.
Nichola X
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Thank you both for your reply I really appreciate it.
I don’t have a nurse i just keep ring the haematology secretary.
On our 1st visit the haematologist said all would be done in 2 weeks. I never expected diagnosis to take this long and the communication to be so terrible no one contacts me to tell me about my scans or if the biopsy has failed just another appointment letter comes through for another biopsy. Then the Dr I spoke to for my 2nd biopsy told me how urgent it is!
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Hi again @Pipbon22.
Diagnosis can take a while. Mine took a good few months with tests inbetween.
At your next appointment I would definitely explain your worries and ask who you can make contact with or how the findings will be communicated to you. This might put your mind at rest a little.
Are you able to take somebody to the appointment with you? I found this really useful. I had all my questions written down so that my husband could check I’d asked them.
As @Erica said, I wonder if your GP could help. May be worth a call?
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We’ve only had 2 face to face appointment one in March and one in April my husband has come both times were we both said about the lack of communication. Have got a phone appointment in July but doubt it will be the consultant.
I will speak to my GP.
Thank you
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I’m sorry it’s been so difficult for you. That’s really tough X
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Hi @Pipbon22 As far as I know I have never got any medical information from a consultants secretary, they are not medically trained.
Perhaps be very organised for your July phone appointment.
Have all your questions clearly written down and tell the consultant (or whoever) that you have some questions that you would like to ask and be pleasantly assertive.
Personally an appointment in July is not bad, 4 mths after April, in my experience I would not expect to be given individual test results in between.
If they felt they needed to contact you in between to have more tests or repeat tests I find they would.
Unfortunately there is a lot of waiting around and not knowing and I know it is horrible feeling in limbo.
We are here for you.
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Hello @Pipbon22
I am so sorry to read of the struggles and waits you have been having.
As both Nichola and Erica have both said the waiting for results can be so anxiety provoking, and especially when we are constantly told that an early diagnosis is crucial. It sounds incredibly frustrating that you’ve been waiting all this time. I am sorry.
I would suggest you contact the PALS department at the Hospital, let them know how long you have been waiting for appointments and results. They can be your advocate with the Haematology team. You can also let your GP surgery know, as they may be able to expedite some communication or get in touch with the Haematology department.
Another organisation to raise your concerns with is Patients Association They are an independent body that will listen and advise.
I do hope you can get some answers soon.
Do contact our support line if you want to talk anything through.
Take care, Heidi.
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Thank you Heidi I think Pals will be my next point of call along with my GP. Fingers crossed that Wednesday biopsy works.
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Hi just to say yesterday I was diagnosed with sarcoidosis the quickest and least painful 3rd lymph node biopsy worked!! Bit of a shock as for 5 months being told you have lymphona Not everything that lights up on a pet scan is always lymphoma so have hope while waiting for results.
Just wanted to say thank you for your support
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Hi @Pipbon22 I bet it was a bit of a shock, how are you feeling?
All very confusing but you show so clearly that the same symptoms can lead to different diagnosis.
Look after yourself and you are in shock so be very kind to yourself.
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