Struggling with stage 4 diagnosis

So sorry to hear about your boys that must of been awful and sorry to hear your diagnosis. I was in your position last December got diagnosed with stage 4 hodgkins week before Xmas and started abvd on the 3rd january. I, like you was so anxious with it being stage 4 but had my interim pet scan and was pet negative with a score of 3. The treatment is fantastic for hodgkins and I have heard so many positive stories. Met a 78 year old woman last week through a friend and she has been 8 years clear from advanced hodgkins. When I had a negative interim pet scan the consultant said I was in the same postion as someone with early stage hodgkins. I honestly found that as time went by it got easier....still have wobbles but not as many.There is groups you can go to to meet survivors of cancer and people that are going through it that might help. I have my final pet scan on Thursday and will hopefully have some good news that I can share with you that you can beat stage 4. Take care of yourself. X

Hi  and welcome to the Community. So sorry to hear about the challenges you and your family have had to face, sometimes for some, this is how the cards are loaded, but its in our hands to take the deal and work it through.

As has been said, the treatment of HL is very effective, yes it can be hard work but as is often said, its do-able.

Although I had a different type of Lymphoma, I was stage 4a2.... but in blood cancers this does not take on the same meaning as in solid tumour cancers as the stage number gives your team the information for the type and length of treatment.

You are being treated in a great hospital with world leading staff, so you will get the very best of care over this time.

You can't control the treatment side of this, that where your team comes in. But you can control the mental battle, keep your eyes on the greater good in all this.

Talking on the forum will help a lot and I am sure that more of the HL folks will be along to help more.

Thanks Dkh for your reply it’s comforting to know that your treatment is going well. All the very best for your scan today everything crossed that this is positive news for you,

Thanks for your reply.Yes certainly our cards our loaded at the moment and I am beginning to get more positive that we can get through this and hopefully dealt a whole new deck of cards with a happy future,

Hi Gatley, 

the Christie is a fabulous (though very big) hospital with an amazing haematology team who will help you through your treatment. 

Hope all goes well for you

hugs xxx

Hi Gatley, 

my husband is in remision from stage 4 HL now ...he had ABVD and then BEACOPP and is almost one year in remission ....we were scared when he got the stage 4 diagnosis as well because you think advanced stage and freak out ...but it’s not the case at all with hodgkins ...it’s not the same as solid cancers and the stage just dictates treatment not prognosis. Our oncologist was not bothered about it in the slightest and assured us it would be ok ...and it was ! Actually my husband tolerated Chemo very well he worked full time throughout even on BEACOPP which is the harsher regime. He was only given that as his pet scan was positive and his end pet too but after a biopsy was repeated on the pesky little remaining chest “Timor” that was still being stubborn it showed up as non cancerous all along ...just inflammation which can happen quiet a lot with chest masses ...basically your prognosis for a cure even at advanced is very good so try not to worry too much and I’m sure you’ll be joining my husband in remission soon ! 

My heart goes out to you and your family. I lost a child at 5 years old in 1993, so understand your struggles in some small way. I was diagnosed with HL a couple weeks ago and just started chemo. I am very lucky to be stage 1, but I’ve been told even advanced HL is treatable and can have good outcomes. Hang in there!

You never can feel lucky to any cancer, but HL is just about the best to have, in terms of treatability. Stage 4 will possibly have more aggressive treatment, but the success rates are not much different between Stage 1 -4 these days, because the treatment is adapted accordingly.