Waiting for diagnosis - lymphoma

Aneta, first LOL on the breastfeeding mamma xx

I would not read into your appointment being moved - you have been waiting for some time so the secretary took pity on you - they have the power.

((hugs))

Hi aneta, 

Sorry to read your problems, i know how you are feeling with the waiting .

I first went to docs in november 2018 and only just got the answer that i have follicular lymphoma.

Still waiting for full body scan date to see where else i have it.

Keep your chin up and family/friends close, you may need them even just to talk to.

Take care and wish you all the best.

Richt.

Hi , welcome to the Online Community,

You may want to have a look at our very active Follicular Lymphoma Forum where you will meet folks on the same roads as yourself.

Just join the group and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

All the best.

Hi again Aneta, I get the stress but do keep reminding yourself this is just tests and test can rule out as well as in and as Mike has said don't read anything into changes to appointment dates, someone may well have rearranged or cancelled an appointment, so that have just moved you forward. Keep us updated and as for pain relief, paracetamol can be fine as the side effects of drugs like tramadol are not nice, hope you get your answers soon.

John 

Hi Richt,

I hope you get the scan date soon and fingers crossed it comes back clear.

All the best to you.

Aneta

Hi aneta, 

Well i definitely have it its just a case of where.

Ive got lumps on neck ,armpits and groin that are visible . Scan will show if i have any inside.

Already had biopsy and 6 lots of blood samples.

Wait and see i guess.

How are you doing?  

Hi Richt,

Yes sorry I meant lets hope there aren't any internal ones.

Waiting since November must have been very stressful. Did you suspect lymphoma from the beginning or was it a shock? I've known for a while that my symptoms might be related to that and asked GP for a referral couple of times but he wanted to rule a lot of things out first.

I have good and bad moments. Yesterday I developed a skin itch mainly on my scalp which is an annoying reminder that I've got something going on. Especially when I have to put my baby down to scratch my head ;)

I hope you are getting a lot of support in this difficult time. I rang Lymphoma helpline today in preparation for my appointment on Monday and they were amazing so give them a bell if you ever feel down. I also rang Macmillan support whilst going through breast cancer screening and they were fab. I'm so grateful for the help that's out there even for people without diagnosis. 

Have a lovely weekend. I hope you are doing something nice and relaxing .

Aneta 

Good morning aneta ,

I'm guessing there will be internal ones but if not that's a bonus.

I've waited along time i think because my bloods didn't show much just crp was high.

 Doctors are just so slow these days its laughable .

I'm very stressed with it all but I'm on the understanding that its the best cancer to have as its so treatable.

Skin itch tell me about it , mine is between my shoulder blades and round my waste. I swear people must think i have fleas lol.

Sounds like you have been through the wars and with little ones as well, how on earth are you coping? You must be so strong!.

Relaxing weekend with my kids i think .

Anyways take care and look after yourself.

Think positive .

Rich.

Good morning folks. Lymphoma is inherently difficult to diagnose and even the very first medical experts will take time to get the real story. My diagnosis took 21 months even although my team were 99% sure what it was but it took 6 biopsy’s and two CTs to get a clear answer.

Lymphomas on the whole do not show up in blood tests, weird, when it’s a blood cancer but some blood results can help direct the diagnosis method.

I don’t think there are any good cancers to have but on the whole blood cancer can be treated well with good results. Solid tumour cancers can be cut out and some follow up treatment can clear up any remaining cells, but for some blood cancer treatments can go on for years.

The time taken just now will find the right treatment path to go on, jumping in without all the evidence can end up treating in the wrong way and wasting time.

I also have asbestosis in my lungs, not that bad but it does effect my breathing. My chest Consultant is a very good family friend so at my yearly clinic we get all the medical stuff done and then chat. He is totally convinced that a positive mindset when going through treatment can add a good 15-20% to the effectiveness of the treatment journey. So a positive mind set that has the battle between the ears under control will help increase the energy for the rest of the body to get through treatment,

((hugs)) all round. 

Hi and welcome to the online community

I'm sorry to hear that you have recently been diagnosed with follicular lymphoma and that you're still waiting for a full body scan.

I see that you've already found the follicular lymphoma group and I'm sure you'll get great support from the people over there. Clicking on the link I've created will take you back there and you could then introduce yourself by selecting 'start a discussion'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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