Welcome to the forum Honey_M although I'm sorry for the reason you're joining us.

I'm sure some of our members who have been in a similar situation will share their advice and experiences with you soon but whilst you wait I just wanted to wish you and your husband the best of luck with the CT scan and biopsy.

We'll have our fingers crossed for good news when the results come back Honey_M.

Kind regards,

Steph, Cancer Chat Moderator

Hi Rose,

It's really worrying us and the wait is unbearable...we have a ct scan on the 6th and a biopsy on the 13th though so at least we have something to focus on. If you don't mind me asking what did the lumps you had feel like? And did they just appear one day out of nowhere? Were your bloods ok? My husband has a lump in his neck and they found something in his chest too which is worrying that if it is the worst case scenario is it possible that it's already advanced...?

It just seems weird that it suddenly just appeared.

Hiya [@Honey_M]‍ 

I think it's quite normal to find lymph nodes enlarged in the chest with lymphoma as there are a lot in there. I know mine were near my heart and a few were the size of satsumas. I wouldn't find the fact it's in the chest necessarily too concerning. They grade by if the nodes are effected above and below the diaphragm, as I had infected nodes all over then I was stage 3. If they had just been one side diaphragm  or other then it's stage 2 or 1.  So it doesn't necessarily mean it's advanced beyond repair. I have stage 3 but am reacting well to chemo and in a part remission already whilst I finish up the rest of it.

As for the lumps, my groin nodes felt a bit puffy and swollen on my right side along my pubic bone. They werent a huge lump or anything like that just a swollen area, it's one of the reasons they originally thought I had a ruptured ovary because if the pelvic and groin area.

My bloods came clear but that's apparently very common.

Yes, try and focus on those dates as best you can.

Sending wishes

Rose

Hi Rose,

I'm really glad to hear you're doing so well and I'll keep my fingers crossed for you that everything continues to go well for you.

I'm sorry for asking you all those questions but you're my only reliable source of information at the moment!!

Did your lumps appear overnight? Did the lumps continue to grow? My husband's lump on his neck appeared overnight and it was a size of a small hazelnut, has slightly decreased in size since (it appeared 2 weeks ago). Does that sound similar to your experience? Did the lumps in your chest obstruct your breathing? My husband is fine we went for a run not long ago and he was fine...

Best wishes

Honey_M

Hi [@Honey_M]‍ 

I'll try and answer your questions best I can -

The lump itself did appear over the course of about 5 days. Although the pain associated with it was way before then, about 2 months of pain before a lump was palpable. They say that was the lymph node pressing on a nerve.

Yes it continued to grow and get more swollen for about 2 weeks before remaining the same size until about halfway through my chemotherapy when I noticed it was smaller. I only had the one area of tangible nodes in my groin but my pet scan showed they were affected all over the body. So yeah my lumps only decreased after chemo, unlike your husband's they didn't go up and down of their own accord.

I never found I was short of breath at all and was very surprised to hear that they were so enlarged as I had no real breathing or heart symptoms at all.

I hope this helps you somewhat!

I hope you are doing okay, sending best wishes.

Rose

Hi Rose,

Thanks so much for taking the time to speak to me, I really appreciate it.

I think I was hoping to hear that the lumps took ages to grow...something that would help me believe that it's not the worst case scenario. But I think we should start preparing for some bad news...I'm really struggling with the whole thing. It's just hard to believe this is all happening. And the worst thing is we won't find out for ages. My husband is falling apart and seeing him so upset is agonising. I don't know what to do.

Hi [@Honey_M]‍ 

I'm so sorry I can't give you the information you wanted to hear. But honestly I think that having some small idea of what you're potentially going into can really help. I know it's just the worst :( and I really wish I could make it better for you. My diagnosis process was just rubbish, the waiting was ridiculous. I remember when I was told I'd need a scan and it was three weeks to the scan then two weeks after that before getting any results, it was just honestly such a hard time for my entire family. And then when that didn't show enough I had to wait on yet more tests! So I completely know what you're going through.

For me personally, I had kinda accepted that there could be bad news on the way, but that regardless I just wanted to get treatment started and to start feeling better. By the time they gave me an official diagnosis I was like 'ok cool now what' because a large part of me had accepted it. Obviously for your husband and yourself that might be difficult to do, but not having it come out of the blue might help in the long run.

If it does end up being lymphoma then there are loads of types, but the positive to think about is that a large majority of the treatment they give is with the intention of full remission and cure. Sometimes they even just put people on a watch and wait list because it's a slow growing disease and they don't require treatment at the time. 

A cancer scare and diagnosis can be horrible, there's no getting around it, but you are not alone there are so so many support groups and people to help.

If you and your husband are struggling I really recommend looking for a Macmillan or other support clinic. I'm so lucky that I have Macmillan one in the hospital I am treated at, but there are lots around. They offer counselling, or just someone to talk to that isn't in the midst of it all. I spoke to them a lot because as much as I can speak to my boyfriend and parents, they're also affected personally. Maybe it'll be worth looking into something like that if you are really struggling? If your husband is getting really panicky then maybe he should talk to his gp, they might be able to give him coping techniques or some medication just for the short term anxiety of it all.

Try writing a diary of thoughts so that they're out there on paper, out of the mind. Try writing questions for when the time comes to see the specialist so you don't miss anything that you forget. Try planning one or two nice things every few days, trips out or films to watch or even just a nice meal and a walk. 

I really hope the time goes quickly for you

All the best, sending wishes

Rose

That's a lot of helpful advice thank you so much! It's really helping me speaking to you. I wish he would reach out to someone too but he's so anxious and distressed it's taken over his life. It's hard seeing him this way and I honestly wish I could swap with him.

We live in a big city so there will be plenty of supports available if it ever comes to that.

In my head I'm already preparing for the worst but to me that's getting the news and going through treatment. I don't consider the OTHER worst case scenario but there are times when I start thinking about it and that's when I struggle to cope. We just go married you know. This is not how it was supposed to be.

I did ask my husband to get some meds but I think just going to the doctors is too traumatising.

We've got the CT scan next Friday. Did your scan give you a slightly better indication that it was lymphoma? The GP said it will be the biopsy that will confirm it one way or the other (that's in 2 weeks' time) but surely the CT scan will reveal something?  

May I ask how long have you been in treatment  for? I'm really glad it's going well for you and that you have a good support network around you. We're always stronger than we give ourselves credit for...thank you for listening to me it really means a lot.

Hiya [@Honey_M]‍ 

It might be that he asks for help in his own time. Everyone reacts differently so just give him space to vent or do what he needs to do. 

Yeah the CT scan showed the extent of the lymph node enlargement around my body. Once they saw there was a lot of lymph node involvement that's when they started to go down the Lymphoma route. After that I had a pet scan which is where they put radioactive sugar into your vein and any cancerous or active cells glow up on a pet scan. Please be assured that both these scans are painless. Your husband might feel like he has wet himself on his CT scan because the dye they inject gives a warm feeling and dilates the blood vessels around the body. Because there are so many on the groin it's an unfortunate sensation! But it passes by the time you can count to 30. 

I have been getting chemotherapy for 16 weeks. I have one dose every two weeks.

Anything I can do to help let me know

All the best

Rose