Hi [@Honey_M]‍ 

Just wanted to say whilst I remembered I hope all goes well at your appointment on the 6th. Keeping everything crossed for you and hoping your husband has managed to find some peace from his anxiety though it's understandable if he hasn't.

I'm in and out of hospital with a blood transfusion at the moment but I'll do my best to reply if you have any questions. Just @ me so I get a notification :)

All the best

Rose

Hi [@Ross2991]‍  *impressed myself I knew how to '@' you*

Thank you so much for remembering about our scan! You're a kind soul. Hope you're doing ok with your transfusion.

I've been having a good week, feeling strong and positive until I got too cocky and started googling...

It said that swollen supraclavicular lymph nodes (which is what my husband has) are very likely to be malignant...plus the ones in his thorax...long story short lung cancer got mentioned and I totally freaked out.

I keep reminding myself that the doctor only mentioned lymphoma plus my husband's x-ray clearly said 'lungs clear' but he also had a 'bulky hilum' and despite my 'research' I still don't know what that is, I just know it's not a good sign.

I feel like it's time to start preparing for the worst but in my head 'the worst' was lymphoma which out of all possible cancers isn't THE worst. But now I'm freaking out it can be something else. I'm also freaking out that it could be that. Cancer is cancer after all. II feel like I've been kidding myslef thinking it's nothing but I think the reality is it's probably going to be bad news.

Can a CT scan give you any indication what it might be? it seems a bit pointless getting it done. Now we wish we had gone privately but at the time my husband didn't want to do it...

Hiya [@Honey_M]‍ 

Try to challenge yourself not to Google anything now! I know it's hard but as you don't know all the facts it'll just lead to more confusion and as you say, it's made you even more worried. Try and get your facts from the specialists and doctors at the beginning at least.

I feel that if they suspected lung cancer they would have mentioned it to you both as that probably would require a different route of tests. Although CT is pretty standard for most initial investigations I believe.

As for your question, my CT scan have a reasonably good indication of lymphoma as it showed just how many of the lymph nodes in my system were enlarged and that my spleen had lots of masses ; a very typical sign of Lymphoma. However as there are 70 odd types of lymphoma the CT scan alone couldn't confirm lymphoma. I needed a pet scan and biopsy to make sure they knew what kind of lymphoma and therefore what kind of treatment to give.

Don't go thinking the CT is pointless, for me it was true starting point of getting proper answers. Until then they thought I'd just had a ruptured ovary or a couple of nodes in the groin enlarged. I know it doesn't feel it but trust me it's all the steps going in the right direction.

All the best to you both

Sending wishes

Rose

Hey [@Ross2991]‍ 

That's actually quite good, maybe we'll get some anwers sooner rather than later. I wonder how long it'll take to get the results...I was under the impression that they would need it to guide the biopsy which is next Friday but who knows.

Surely a number of enlarged lymphnodes alone don't always mean lymphoma? Because if that's the case then well we already know he has enlarged lymph nodes in his chest. In which case...we better start preparing ourselves.

Did you ever get an X-ray?

Hiya [@Honey_M]‍ 

They may use an ultrasound probe to help guide the biopsy, as I don't think it's convenient for them to do it during CT scans or those larger type of scans. That's what happened for me anyway to make sure they got a useable sample from the nodes.

A number of enlarged nodes definitely doesn't mean lymphoma but I think in my case it was the combination of so many being enlarged and the changes in my spleen that made them fairly confident it was lymphoma. That's the benefit of the CT scan, the dye shows up all the vessels in the body and gives an accurate picture of head to toe rather than just say a chest x-ray.

I did get a chest x-ray although looking back I'm not sure if this showed anything at all. I think they did it to rule out infections. 

All the best

Rose

Hey [@Ross2991]‍ 

He's only getting a 'chest, abdomen and pelvis' CT scan. I'm still not sure how the CT scan will be able to give us more info but that's because I don't really know how it works. I can ask them tomorrow I suppose.

I just can't believe this is all happening...the lump on his neck has definitely gone down, it's much softer too. But I don't even know if it means anything. The other thing the dr suggested was sarcoidosis. Also not great. He didn't ask my husband about vaping and when I told him we were on a tropical island (other side of the world) not long ago he didn't really seem interested. I though he might have picked somethig up there...

 He also said that it wasn't reactive nodes. This is what I don't understand. How could he have said all this and then told us that the specialist wasn't concerned enough to see us urgently? My brain is completely fried.

Hopefully tomorrow we will be able to find out a bit more info...

All the best

Honey_M

Hi [@Honey_M]‍ 

In response to your last question for me - no, my lump was not protruding. Occasionally if I leant my neck all the way to one side you could very slightly see it, but not when sitting/standing normally. 

Googling is the best way for anxiety to shoot through the roof. I really have come to realise that even if all your symptoms match all these forms of cancer, it genuinely does not mean you have it. It is human instinct to think the worst and only the worst even without any medical knowledge or understanding. 

Please please do not Google. It's a killer of happiness and 99% of the time completely untrue or unrelated to what ever might be causing your husbands symptoms. The body is a hugely complex and clever system. It reacts in many mysterious ways - leading to many strange symptoms that are not dangerous or harmful.

Best of luck for tomorrow, we will be thinking of you both x 

Hi [@Emily_B]‍ ,

Unfortunately in our case it wasn't Dr Google who suggested lymphoma - it was an actual doctor ;)

Also said that there were a few things that suggested otherwise! So we don't know what to think.

My husband's lump is the same, you can't see it. But he has more in his chest.

I do wonder if it could be sarcoidosis. Purely because the main difference between sarcoidosis and lymphoma is that those 'lumps' present on both sides of the chest whereas with lymphoma it tends to be more localised. We don't know what's it like in his case but his x ray did no specify anything so potentially it's on both sides. Dr also suggested that it could be sarcoidosis. Maybe this is one of those 'few things' that suggest something other than lymphoma.

My husband is very upset, sometimes he's coping sometimes he's not. I still hope it's to do with his bloody vaping!!!

Thank you for your kind words, hopefully the scan goes ok...

Hi HoneyM

I just wanted to wish you and your husband good luck with the scan today. It's goid that they're doing the whole chest and abdomen, Initially I only had the chest and neck done so now I've got to have another one next Friday on the abdomen. And so it goes on, I keep telling myself that every test is a step nearer to a diagnosis. Best wishes Rose B

Thank you that's so kind of you. The scan went ok (he didn't faint which was a bonus haha). He seems to feel a bit more positive so hopefully that continues.  I agree it's better to just find out what it is otherwise you get lots and lots of horrible scenarios going through your head.  Good luck for your scan on Friday, we've got the biopsy that day. Friday the 13th eh? Better be our lucky day!!!;)