Waiting for diagnosis - lymphoma

hi Aneta, sorry to see you using the site and having a stressful time, first a step at a time, someone has only suggested you get checked for lymphoma so its still possible this could be none lymphoma related and the only way to confirm lymphoma is via a biopsy and prior to that a CT scan would be needed. When you say swollen nodes are they larger than an inch or so? and when you say night sweats are you having drenching sweats - head to toe, where you need to change the bedding and nightwear. 

Next if it should be lymphoma then its a treatable disease and blood cancers are not like solid tumour cancers but as I say a step at a time and try to tell yourself its not lymphoma until its confirmed, yes the waiting is pants, but you have to rule things out sometimes to identify what it is so your GP is helping you to seek some reassurance. Keep busy, keep your self distracted and try not to dwell on the what if's or maybe's. Most people who think they have lymphoma don't and those that do find it comes from nowhere and was an unexpected diagnosis. Nodes can be raised for many reasons as its what they do and if your body has an infection or is dealing with something this could be a reason for them being raised.

John

Hi Aneta A.B. and a second welcome to the Online Community but so sorry to see you joining us.

The not knowing what is going on with your body is  such hard work, stressful and very tiring. You just need to keep pushing the doors to get answers and the fact that you are seeing a Haematologist will help you get some answers one way or another with regards to Lymphoma.

The wait is hard but Heamatology is one of the hardest clinics to get quick appointments with.

We do get a lot of folks come on the site asking the same questions and I am pleased to say that a very high percentage of folks come back to say Lymphoma is not the problem - let’s look for this to be the case,

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

We are around to help out as best as we can.

hi Aneta,

Good luck, definitely get a second opinion as in my experience docs don’t talk straight, you have to read between the lines what is a shame really.

lymphoma is treatable, try immunotherapy first if it comes to that, chemo is basically poison a hell of a difference imho

8 weeks that’s definitely way too long wait, push some buttons!

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Hi John. Thank you for taking the time to respond.

No I don't think the nodes are larger than an inch. They are more pea size, located in my neck, collarbone and groin area.

As for the night sweats I never actually had to change the nightwear but with me being up every 1.5-2h to feed the baby I get to cool down couple of times a night

I appreciate your reassuring comments. I have never been very patient so it's a torture for me. I will try to keep myself as busy as much as I can.

Aneta

Hi Thehighlander. Thank you for your response.

It's reassuring to know that many people turn out not to lymphoma. 

I do hope I will get the letter sooner than later however the doctor said he is not referring me under the two weeks rule and will let them decide if they want to see me at all. Not very encouraging

I will definitely give the team a call if I'm feeling down again. Thank you for the number.

Aneta

Hi RareC. Thank you for responding.

I did see a private GP for a second opinion. She wouldn't have been alarmed by the nodes themselves but as they are accompanied but other symptoms she suggested some tests I can do privately . Starting with the chest x-ray. Others are colonoscopy and CT scan. The latter is not an option at the moment but the x-ray is something I might consider.

I have also done a private abdominal ultrasound and the doctor did confirm there is some changes on the bowel (possible nodes?). GP organised his own ultrasound which didn't include checking the bowel area. So even though I have a picture of those changes in the bowel the doctor is not interested as his report came back clean.

I has been eventful and costly 8 weeks ;)

Aneta

Hi again Aneta, these bodies do make it hard to live. Its interesting that I also have a growth on my neck that is just bigger than a pea and I know its not a problem due to the amount of CTs and tests I have done over the past years, so best not to jump to a conclusion.

Not knowing is hard and yes, why not call in to Heamatology as you can often find that they have a cancellation on the system and if all it does is raise your case a little higher then good.

I was diagnosed 20 years ago but it did take over a year of tests by my amazing GP and my very respected Dermatologists (I have a skin Lymphoma) to get the actual definitive proof that it was Lymphoma. After living 14 years with my condition it became very aggressive so had to be referred on to Oncology, Heamatology and Stem Cell Transplant.

Lymphoma is the fifth most common type of cancer in the UK but the investment in the Heamatology system could be better to cut down the waiting lists. The fact that your GP did not refer you under the two week rule will mean that you are on the rather large list of people looking for answers. But once you get on their radar they will be able to find out if and I do say if this is Lymphoma based...... but keep pushing the doors as it will open.

Keep hanging in ((hugs))

Update - due to a cancellation I now have a visit at the hospital for 23rd of April.

As GP has done all the necessary blood tests I'm hoping that the hematologist will refer me for CT scan and biopsy straight away but I shall wait and see.

The pain very much affects my everyday life and looking after my kids. But now that the date has been set I'm feeling more calm although still stressed

I will post an update once I've been seen.

Aneta

Hi again Aneta A.B. so a date to work towards, not worry about. So start to get all your history down in a note book. Also all the questions you would like to ask.

Are you getting suitable pain meds from your GP, these are always something else that can be used if what you have is not doing the job.

The stages of Lymphoma diagnosis are usually the same so looking at CT and Biopsy would be on the cards.

Keep us up to date with how you get on.

Thanks for your input Mike.

I have started making a list of all the symptoms and dates they started as suggested.

Unfortunately there isn't many fancy painkillers for breastfeeding mammas. So I'm using good old paracetamol

The consultant's secretary reviewed my referal and moved the appointment to this Monday. Not a good sign lol. But I'm pleased I will be seen sooner.

Thanks again

Aneta