I am waiting to talk to a specialist, but it’s more difficult right now due to covid. Yeah, my veins are pretty disgusting too. Can’t take my top off anywhere because of it haha. I’ll find out for sure when I talk to a specialist, but I think the svco will always exist after the lymphoma blocked & closed the svc. Only way to reopen it is to either force it open if possible or use a stent. It’s weird because I would have thought the svco would be completely gone once the chemo got rid of the lymphoma, but apparently not.

Do you still have the stent in the svc? I think this might be my only option so would be good to hear your experience.

I hope the specialist can give you some clarity as to why the svc is still closed when you see them, even though you've finished chemotherapy. Do you have any other SVCO symptoms other than the veins and headaches/dizziness, if the svc is still closed? I had breathing difficulties and a swollen face, but I don't know if the breathing problems I had were due to my svc being obstructed, or because my trachea was also severely compressed. 

I still have the stent, which I've been told will remain in my svc permantently. When I went for my radiotherapy planning consultation, the radio-oncologist contacted the surgeon who fitted my stent to find out if it will be removed before I started radiotherapy. He (the radio-oncologist)  said that as the lymphoma is now gone, I don't need the stent keeping my svc open, making me think the stent must now be redundant. But then I haven't actually been told exactly why my stent won't ever be removed. No one talked to me about the stent once I started chemotherapy, they only checked with me how my breathing was up to my second cycle of chemo (which was predominately resolved by the stent, and completely resolved by the time I had my first chemo). 

I had bad face swelling when I was first diagnosed but the chemo got rid of this. Now just have the veins and face going red when bending over - since smaller veins are being used, the blood has trouble flowing to the head as quick. Not sure if it’s related to the svco but my hair is super thin all over too, which is unusual. Didn’t have any difficulties with my breathing before treatment.

I’ll find out what will happen to my svco but I’m thinking stent is the only solution if I am to get rid of it. I would have thought the chemo would get rid of the svco completely as the lymphoma obstructing the svc is now gone, but if you were told your stent is permanent it must be needed to keep the svc open. I didn’t do radiotherapy if that makes a difference. Do you have to take blood thinners with a stent in the svc by the way? 

I'm not sure about thinning hair being caused by svco, but I would have thought that wouldn't be likely. I'm glad you didn't have any difficulties with your breathing before you began your treatment. 

I don't think the radiotherapy would have made a difference ragarding the stent - I think my radio-oncologist was thinking that, if the stent was to be removed, it would make sense for it to be removed before I began my radiotherapy sessions. 

I did have to take blood thinners, but that wasn't because of having the stent. My mass, by pressing on my svc and causing the obstruction, also caused a blood clot in the vein. My consultant presribed me a 3 month course of blood thinning medication, which got rid of the clot. I was told by the registrar that as stents are foreign bodies, they can increase the risk of a blood clot, but I don't think people have to take blood thinners with a stent unless they do get a blood clot. The blood thinners I was on was definitely to treat the blood clot, rather than having anything to do with the stent. 

I'm also not sure if that's why the stent is permanent - I thought that it was because there isn't any way to safely remove the stent, and that they think it's not worth the risk as having it isn't doing any harm. But then my team stopped talking about the stent after I began treatment so that was just my understanding that it's not possible to reverse a stent. The radio-oncologist definitely said that now the lymphoma is gone, I don't need the stent there keeping my scv open, making me assume that my svc must now be open naturally of its own accord. 

Thanks for responding! I actually don’t know anyone that’s been in the same situation with svco so it’s good to hear your experience.

Yeah, the thinning hair probably isn’t caused by the svco, it’s just normally everyone’s hair grows back as normal after treatment but mine has stayed super thin for ages (so I’ve got no choice but to shave to zero guard).

Ah yes, I had to take blood thinners too during treatment to get rid of the mass but stopped once it was gone. I actually thought you always had to take blood thinners (or some other medication) with a stent to prevent blood clots but it’s good to hear that isn’t the case. This was actually my worry about getting a stent - I’m quite active and like going out so thought maybe the stent would stop me from being able to do certain things. If blood thinners aren’t even needed, is the stent much of an issue or it wouldn’t make a difference if it was there or not? 

You’re right, it’s probably a pain trying to remove a stent so not worth the hassle. Hopefully I can talk to a specialist soon then so I can figure out why I still have svco, as it is a very weird situation haha.

I'm very active myself and the stent hasn't got in the way or interfered at all. Luckily by chemotherapy didn't affect me at all really and I was able to be very active during my treatment too  and, even earlier on when the stent was needed and serving a purpose, it still didn't get in the way. I did some research after the stent had just been fitted, before I began chemotherapy, and people are just to avoid stenuous exercise for about a week after the stent is first fitted (though I wasn't told this by my team, but then I had been in hospital almost a week before I was discharged), but then they can go back to doing exactly what they normally do after that. I hope this helps and is reassuring. 

I really hope you manage to speak to a specialist soon to get an explanation as I know how unpleasant svco is. It defintley sounds a very strange situation too, so it would be good to get some clarification.