Waiting for diagnosis - lymphoma

21 months seems like eternity Mike. But it does look like your doctors were doing their best to get all the tests done in preparation for the treatment.  

I just felt so lost and unhappy leaving the doctor's office every time after being told I'm ok and my symptoms are due to anxiety. Was refused scan of my back and abdominal area as "the radiation causes cancer" and when asked for a colonoscopy I was told I'm too young for a referal. But feeling positive for Monday and hoping we are on the right track now.

Richt I know it's not a laughing matter but it made me smile reading about the flees. My son once got head lice in the nursery and we all scratched like crazy even though only he had it. Told my friends about the lice as their kids played with my son and they all started scratching their heads immediately lol. So I'm hoping it's all in my head this time too :) 

Have a lovely weekend everyone. The weather is nice where I am so planning a barbeque

Aneta 

Hi Aneta, so going forward you need to leave all the past ‘what ifs’ and ‘this should have happend’ it is the past and looking back does to improve the route forward.

You have an appointment with the subject specialists so the process will be put in place to get answers and this could be a quick answer or will take more time as more tests are put in place.

So concentrate on being ready with your medical history and all the questions you feel you need to ask. Very important that you don’t be leaving the clinic saying “I wish I had asked.....”

21 months.......the time actually made no difference as to how things developed over the years so I learned very quickly that all the stress in the world was a waste of energy.

We have some of our granddaughter up and as it’s our 40th wedding anniversary tomorrow a little celebration will be going on.

Enjoy the BBQ and the time with your family xx

Hi all,

So I had my appointment today. I was on my own and was on a verge of a panic attack when I got there. But luckily some free coffee worked as a great distraction ;)

The consultant referred me for more blood tests. They took 7 samples of which two are for cancer markers (lymphoma and bowel). This was my 5th full blood count test in 2 months. I'm a regular blood donor (currently on a break) so I don't mind but that's more than I had done in the last 5 years lol. 

I will see the consultant again in 4 weeks and she will phone me if the blood tests show any abnormalities. 

I wouldn't normally mind the wait if it wasnt for the pain. I asked whether its possible for internal lymph nodes to be so enlarged that they put pressure on the bowel and nerves.  She said it's unlikely as then the ones on the collarbone would need to be massive too. She finds it weird that the pain comes and goes and it's in different places. I can forget about the CT scan for now as they have no ground to request it as yet.

Have you guys had lymphoma cancer marker checked? I didn't even know it existed until the consultant mentioned it

Just to add all these people I saw today waiting for their regular appointments and chemo made me think of this forum and how I admire you all for the courage and strength to fight this thing! You are all true heros.

Thanks for reading

Aneta

Hi again Aneta A.B. sorry to hear you were near a panic attack but Coffee is an amazing tool..... but remember to take someone with you when you go back, even just to hold a hand.

In all my first 14 years not one blood test over those years showed anything that would have said I had Lymphoma it was only through biopsy..... a CT showed nothing during those first years.

But some blood conditions and I am sure other cancers can show markers in blood tests.

But good that they are looking further into what is going on and let’s look for you to get some clear answers. 

Well done with regards to the blood tests, my record at one time is 18 lol.

So in the mean time, don’t overthink this and look for good results when you get the results.

((hugs))

If you have indolent lymphoma even ct scans may not show it, probably you will end up with a biopsy, CT and bone marrow biopsy.

biopsy is usually a sample from the tissue then they use some dye or more and look at it under a microscope to get an ID.

the CT is to check if you have some aggressive type with lot of internal activity. bone marrow is how deeply spread/bad is it and what type. No worries both are OK, don’t hurt that much

MRI is more expensive that’s my understanding. So CT usually first....only if there was some other specific reason for MRI.

i would push for proper thorough investigation, the more they do the better for you. At least you have got past your GP many times they are the show stopper.

interesting that you are a blood donor, is it possible to spread blood cancer by giving blood? I have read about getting cancers directly from organ donations. Kidney or liver again blood related.

Hi all,

Richt I hope you have had the scan by now and are closer to starting the treatment.

I thought I would post an update as I had my second appointment with the haematology consultant on Wednesday. All my blood results including LDH came back normal. I did expect that but the consultant seems to think it means I'm not ill. I've had neuropathy like symptoms with pain in legs and arms, pins and needles in my hands. I also had a cough for a month now. That's on top of my abdominal pain and itchy skin. 

I told the consultant I worry that there might be a mass present in my abdomen pressing on the bowel and the spine, causing nerve problems. She looked at me with pity lol and said she will arrange an abdominal CT scan in the next 6 weeks. But more to reassure me that there is nothing there.

I know I should trust the doctors but I feel so unwell and it's progressing and noone seems to think there is a problem there. I just don't know what to do anymore and 6 weeks is such a long wait and things might get worse. Any words of wisdom?

So actually getting a CT is a good result, yes a long time but you are not being seen as a high priority so you have to be in the list but often cancellations do come up so once you get the appointment letter phone the Radiotherapy department to see if there is any cancellations.

I am far enough away from you that you can not hit me...... but you have to take into account that stress and worry is shown to develop or even feed physical illness. Take these weeks to try and park, or at least try not to focus on this as best as you can and see what happens.

((hugs))

Hi. Yep had scan and results today and its bad news, spread body wide and enlarged spleen and enlarged kidney, next appointment a week thursday.

Very shocked.lost for words really.

Hope your coping well.

Sorry to hear this news, have they confirmed what type it is and what is your treatment plan is?

Remember that on the whole this is very treatable and we can help you navigate this with you. 

Please have a look at our four main NHL Forums:

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-Cell Lymphoma

And we also have the General NHL Forum

Hi Richt,

I'm so sorry it's bad news. I had my fingers crossed for a different outcome.

I have read that the stage doesn't really matter, was also told the same by a nurse. But I guess mentally it's harder to come to terms with. Let us know what you find out at your next appointment. I'm coping ok thank you, just want to know what's wrong and face it. 

RareC, apologises I missed your post. Thanks for the info on different tests. I'm not sure whether cancer can spread via blood donation but I wouldn't risk it even though I don't have any diagnosis yet. They always ask tons of questions before each donation. About any illnesses, hospital visits etc so I would probably be turned down anyway once I admitted that I practically lived at my GPs door step the last couple of months ;). 

Mike, yes I know that the stress is a big enemy. Will try to take your advice and focus on other things.

Aneta