Hello, I am so worried about my son. He had a biopsy and ended up in A&E the next day, had a seizure, sepsis levels of infection.
The biopsy was in Stanmore on 20th October, we got the initial diagnosis on 25th October, yesterday 31st October we had a full PET CT scan which showed as well as a large knee tumour (8cm?) some other skeletal issues.
I am so so worried but we don’t yet have the subtyping to be able to start treatment.
How long does this usually take? His rheumatologist has been amazing and helped us to make sure what needs to happen is happening but we need this information and I don’t understand. I’m panicking, of course. He’s my boy. Thank you.
I’m so sorry to hear what is going on with your son & can fully appreciate all your worry & concern. It must be an awful time for you. It sounds as though things are happening quite quickly & I’m sure you won’t wait too long but you really would be best to speak to your sons care team to find out the next steps to put your mind at rest. Has your son been referred to a different team yet apart
from his rheumatologist?
I hope that your son is feeling a bit better & the infection is now under control. Rest assured you will find support here & please feel you can reach out for all the support you need. Please keep us posted & take care of yourself
He has nobody. This is why we are struggling. They don’t know exactly what type of cancer so they aren’t ready to start treatment so they haven’t allocated anyone. It feels so wrong. He really needs some support.
Hi @Baker16 I am so glad that you have found us, you must all be in such shock at the moment. Of course, he is your boy, it is natural to be in shock, panicking and wanting answers as soon as possible.
Unfortunately, you have both entered a time of waiting, which can feel endless and the worst feeling.
It sounds as if things are moving, but it just take time.
You do not say how old son is, whether he is grown up or not.
If not, you can obviously be his spokesperson, otherwise you are his family member (next of kin?).
From what you say his key contact is his Rheumatologist, at this point, probably until all the test results come back, the type of cancer, if it is, the way forward, treatment team and treatment plan decided.
The best thing you can both do is really look after yourselves and please do let us know how you get on.
Thinking of you both loads, all your feelings are so natural.
It’s cancer. It’s b-cell lymphoma, but the specific subtyping was being waited on. We know now there is lymphoma in his nodes and small bones. We’ve known for a week it’s lymphoma, just can’t get any medical care of any type. He doesn’t know whether he can bank sperm or when treatment might start. Every hour is like a day.
I would suggest making an appointment to go & see the GP so that they can offer you the medical advice & questions you have. Your son can discuss his concerns & worries & your GP may be able to help to see exactly what is happening regarding the plans at the hospital. It may also be worth calling his Rheumatologists secretary to see if they are able to find anything out. Please do tell your son to also call our support line if he would like to speak to somebody. I hope that you can get some much need answers.
Dear @Baker16
Thank you for posting and I am glad you found us here on the Forum.
It is totally understandable that you are worried and that the waiting must be to difficult.
May I ask whether you son is a ward at the moment? Can you tell me what team told him the initial diagnosis? If he still on a ward I would ask for the Ward Manager/Sister/Charge Nurse to support you in getting some more information and a plan.
Your son’s case will be taken to a Multidiscipinary Team (MDT) meeting which is where multiple health care professionsals will review the scan, biopsy and presentation of your son’s condition. This will allow a thorough assessment and plan to be made. I really hope this outcome will arrive very soon for you.
If you would like to give us a call here you are most welcome nad please do keep in touch. Wishing your son well and do take care.
Hi @Baker16 I cannot apologise enough, I was so busy reading your post I did not take in the title, in big letters.
Every hour must be like a day. @JoJoflowergirl and @GemmaBloodCancerUK have given you great thoughts.
Perhaps this time will give you and your son an opportunity to write down all those unanswered fears, thoughts, questions, practicalities you might both have so everything is covered when questions etc. can be asked.
The Blood Cancer UK website have some useful fact sheets and pages like ‘Young Adults with blood cancer’, ‘Money and work’, ‘Mind and emotions’ etc.
We are here to support you both.
Please do keep posting.
Now he is in the hands of the right people this is a massive step for you all.
Waiting is the downside i know its horrible but big steps are in place now to get your son help .
Just saying this because at time of diagnosis everything is rather grim but in hindsight looking bak its a massive step forward…it just dont seem like it now of course.
