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Lymphoma Diagnosis

Anxious76
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My wife had been feeling under the weather for a couple of weeks with shortness of breath and cough. She noticed a lump on one side of her neck and went to her GP who sent her for a chest X-ray as he had some concerns

A couple of hours after the X-ray, the GP phoned asking for us to come see him straight away. He said the X-ray showed enlarged lymph nodes in her neck and chest and a small amount of fluid in her lung. He said he was fairly certain this was lymphoma and referred us in an urgent two week list to see a haematologist

We have had this initial appointment with the haematologist who has referred my wife for a CT scan and biopsy before he can give us any more information on the possible diagnosis. We have had the CT scan and have the biopsy this coming Monday. We have also received an appointment to see the ENT surgeon next Thursday before going back to the haematologist a week on Tuesday. 

My wife suffers from extreme anxiety so obviously this news has seriously impacted her mental well being (not to mention mine). She is in tears daily thinking the worst and saying she is too young to leave me and my son  

i am trying to be as positive as I can and reassuring her that the doctors can work wonders now and there are possible treatments depending on what the diagnosis is confirmed to be but I know how hard this must be for her

The waiting for each appointment and the results is the worst part  we feel we are in limbo while everyone around us is carrying on with life as normal

i have been signed off work for a couple of weeks to help my wife through this painful waiting as I am struggling to keep things together myself

i have suggested we look to go to a support group or talk to others who have been in our position to share emotions as I don’t think we can cope with another 2 weeks of waiting to get results

Any advice anyone can give to help us deal with these feelings would be so much appreciated as we are both so scared right now

We have had to rehome our beloved dog due to not having the time to devote to her and the fear of having her around if chemotherapy is required. This has added to our sense of loss and anxiety 

 

 

 

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    Hi, sorry to hear about your wife’s diagnosis. I have been through having had lymphoma and finished treatment last November. I’m surprised your doctor has almost diagnosed lymphoma already. The only way to tell what kind of lymphoma it is, is with the ultrasound and biopsy. Mines took around three weeks for results to come through. The ct scan tells them what stage you are at. I had a lump in my neck, under my arm, nodes were enlarged at each side of my lungs and kidneys. They did start me on chemo which I honestly found not too bad. unfortunately at one of my follow up appointments, I had another lump in my neck, my haematologist sent me for an x ray and biopsy on my neck. Unfortunately it has came back but they won’t do treatment as I don’t have the “B” symptoms and I’m on watch and wait now. I go in every 3 months for bloods etc which I’m quite pleased about really. I’m not saying your wife has lymphoma but if it is, they may not do treatment for years and just put her on watch and wait. This is why they do all these tests so that they get the correct diagnosis. It’s not just the haematologist that decides on when treatment starts,  it’s a multi disciplinary team that decide when to start treatment. I do know how worrying this time is, I was almost 3 months of waiting for tests etc before I finally started treatment and by that time my mind was more than ready for it. I hope you get the results quickly and hope the results are not too bad. All the best. 

  • Offline in reply to scones

    Thanks so much for the reply. It is nice to hear other people’s experiences as this is all a bit overwhelming for us at the miment

    My wife has had her biopsy a few days ago and we have an appointment next Tuesday to see the consultant haematologist to hopefully discuss diagnosis and treatment 

    Had a scare yesterday as my wife has been struggling with her breathing over the last few days. Yesterday her left arm began to swell so I took her to A&E where they carried out an ultrasound and chest x-ray

    They think that a lymph node in her armpit is putting pressure under her arm and there is a build up of fluid in her arm. They also think that lymph nodes in her chest may be putting pressure on her lungs and that is restricting how much air she can take in

    She has a small amount of fluid on her lung but not enough to warrant it being drained

    She has been given a strong course of steroids (Dexamethasone) to hopefully relive the inflammation and our consultant wants us to see him on Tuesday regardless of whether the biopsy results are back

    We just want to have a clear diagnosis and start on any treatment now as the waiting is awful and all these symptoms are beginning to really scare my wife

    Just hope that when the treatment begins, she will start to feel a bit more normal as she is restricted in what she can do with the lack of breath

     

     

  • Offline in reply to Anxious76

    Hi, sorry about your wife’s latest experience. It must be very scary, hopefully the steroids will help her. When I started my treatment I did start to feel better, taking steroids certainly helped bring my appetite back which in turn gave me the energy I needed. I had six rounds of R-CVP and coped pretty well on it. Any problems were dealt with quickly and efficiently, the nurses were brilliant and the doctors exceptional, you could call them any time if you were worried. I wish you well for your next appointment, please keep me informed.

  • Offline in reply to scones

    Latest appointment today with ENT surgeon to see whether they were to look at removing any more of the neck node for further testing

    Surgeon had the results from CT scan and initial biopsy so sat ya down to explain what had been found before we go to see Consultant haematologist next Tuesday 

    it looks like my wife has Non-Hodgkin Lymphoma which looks to be at Stage 2. It is in both sides of her neck, in her chest and her armpit. She also has possible gall stones and fluid in her lung and around her heart as well as some squashed blood vessels

    Doing any surgery on her neck would prove risky with all these things going on so will have to wait to see haematologist on Tuesday to look at treatment options

    has anyone had any first hand experience of Stage 2 Lymphoma and the treatment options/success rate?

  • Offline in reply to Anxious76

    Hi, sorry to hear the result, at least you know now, as I’ve said I had stage 3 Non Hodgkins, but a rare type of it, there are loads of different lymphomas and they usually tell you from the biopsy which the haematologist will possibly tell you, she will give you a few little information books from McMillan and Bloodwise. They are very good and tell you everything that you need to know. I had to have a bone marrow biopsy but not everyone has that. Once all the tests are in they will discuss treatment with the multidisciplinary team. They decided to start me on chemo right away. At the moment because mine came back now at stage 2 and not making me feel as bad as first time, I am now on watch and wait. Now you have to wait again for the next appointment, it’s soul destroying, I think I was worse waiting the second time around as I couldn’t take it in that it came back as quickly as it did. I’m not a doctor but as it’s affecting your wife’s breathing etc I think they may start treatment but you never know how doctors think. I felt so much better after a couple of treatments and the drugs they give you help a lot more than they did years ago. Good luck for the next appointment.

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