Hello HelenJ92, 

Poor you it sounds like you have been through so much recently. It looks like they took things seriously in hospital and did all the necessary tests. I am glad also that they treated the SCV symptoms and you were able to breathe better again. 

I hope that you won't have to wait too long to have your biopsy and that it goes well. It must be a frightening time for you and I hope that the chemotherapy treatment goes well and that you won't suffer any side effects. There is in depth information on our website on chemotherapy which you can find on this page. More specifically, you will find a section on fertility and chemotherapy here which I hope will answer some of the questions you may have on this. Do talk to your medical team about this and ask them what your options are and that you would very much like to have children in the future. I am sure they will be able to tell you more about this. 

Feel free also to give our nurses a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm and they will be happy to answer questions you may have and talk things through with you. 

Keep being positive and strong - it is normal to be terrified and I just wanted you to know that you are not alone here. There are so many others on this forum who understand how you are feeling at the moment and who have been in a similar situation themselves. I hope they will be along shortly to share their story with you. We'll be thinking of you in the next few weeks. Keep us updated if you can as to how things are going!

Best wishes, 

Lucie, Cancer Chat Moderator

Hi there seen your post and just wondering how you got on? I also have lymphoma with svc obstruction 

Hello Nico1, 

I'm really sorry to hear you're experiencing SVC obstruction - I still remember living with it so clearly and it really is truly terrifying. 

My second biopsy did turn out to be conclusive, and I was diagnosed with diffuse large b-cell lymphoma, stage 3. I went on to have 6 rounds of chemotherapy (RCHOP), which I finished at the end of January. I then had my PET scan in mid-February, which showed complete remission, and then had 15 sessions of consolidation 'belt and braces' radiotherapy (as my mass was originally bulky). I'm now being followed up every three months. 

I hope that your SVCO symptoms are resolved as quickly as possible, and wish you all the very best with your treatment. 

Thanks for your reply! Great you are in remission. 
 

so basically I was having swelling in the face dizzy face going red when bending over visible veins on chest docs kept telling me I was fine which I knew I wasn't so I finially got listened to after 8 months and turns out I have stage 2a Hodgkin lymphoma. The minute I started chemo I had relief from the obstruction I have had my mid pet scan and was negative and no obstruction but my worry is that my veins are still so visible! Did you have visible veins from it?  I currently just had my 8th chemo today so 4 more to go

Hey, I have svc obstruction caused by lymphoma and have visible varicose veins all over my chest & stomach. I also have that head issue when bending over - face going really red & veins bulging and I can’t do anything that involves bending down for long. I’m in remission now and the chemo improved the symptoms but they’ve never fully gone away.
 

Glad you brought up the veins on the front body since they don’t look pleasant, but I don’t actually think it’s possible for them to be removed (at least for me, my svc is not in use after treatment; the varicose veins are instead being used), which is annoying. Don’t know if anyone else has the same experience of these veins still being in use after chemo and not the svc.

Yes I had that before I got dignosed the head feeling full face going red. Lips going blue dizzy etc it's not nice at all. That's great you are in remission!! So have you finished treatment? Can I ask what you mean when you say your svc is not in use anymore? And the varicose veins being used instead ? 

Yes, I finished chemo a few years ago.

In my case, the svc was blocked due to lymphoma but the chemo got rid of this svc obstruction, relieving most symptoms. Due to the svc obstruction, those varicose veins were formed (visible on front body)  so blood could still flow from heart, and acted as replacement for svc. Trouble is, even after chemo, the svc is still no longer used for blood flow - instead these smaller veins are still used. And since these veins are not as major as the svc, the head issues happen when bending over.

I’m not a specialist so my understanding might not be perfect, but that’s my experience. I don’t know if the svc can be reopened/reused after an svc obstruction, but I believe these varicose veins would go away if the svc was used again. It would be good to hear if anyone has actually managed to remove these varicose veins caused by svc obstruction post treatment.

Hello, that's great to hear you're in remission.

I had a stent fitted to my SVC, which immediately resolved all my symptoms and the veins went down and completely disappeared. I was expecting though that they wouldn't go and that they would always be visible (they were across my chest and also on my upper arms). I had my stent before I began chemotherapy, which then meant that my SVCO had been treated before I began chemotherapy. 

Has your team not explained to you why you still have some symptoms of superior vena cava obstruction when you've now finished chemotherapy and are now in remission?

Hey, great to hear you got rid of the veins!

I’m still getting svco symptoms since these smaller veins are being used for blood flow instead of the svc. Basically still have the svco even in remission. I’m trying to speak to a specialist but it’s hard right now with covid.

I’m only 20 so don’t know if getting a stent is the right thing at my age (taking medication daily & side effects etc.) but I’m not too familiar with them. It’s a shame there probably isn’t any other way to reopen the svc, but it’s great that it gets rid of all the veins and svco symptoms, as these are a pain.

I'm sorry you're still experiencing the svco symptoms - I didn't have any headaches when bending over but the veins were really horrible. I hope you manage to see a specialist before too long. Have your team referred you to anyone? 

Can I ask why you're still getting the headaches when the chemo got rid of the obstruction? Has your consultant explained why your svc isn't being used for blood flow despite it no longer being blocked?