Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Lymphoma diagnosis

anxious76
Posted by

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

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your wife.

A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.

I have lived with my type of Non Hodgkins Lymphoma (there are over 80 types of Lymphoma) for over 20 years, it was a rough journey but eventually I did find remission.

The diagnosis journey is hard as the unknown is so large and overwhelming but the CT and biopsy will give clear direction to your wife’s team with regards to what treatment would be spot on for her presentation...... yes the waiting is hard but this part is very important.

Please understand the stage that will be given gives her team the treatment plan - blood cancer is nothing like solid tumour cancers as the treatment goes through the blood stream and at it’s basic form - melts away growth areas.

Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Support us so important so have a look at our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.

Have a look see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it thank about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.

To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.

We are around to help you all walk this together.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Thehighlander
Posted by

...... just to add.........and this may sound rather basic and to the point but from my 20 years living and being treated for Lymphoma all the worry in the world will make no difference to what the consultants say......... but put all your focus on planning to get through this - this is very important.

Could I recommend that you prepare for your next appointment with her team. I would always recommend you get a family note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

The note book should have questions like:

What type of condition has been diagnosed? - exact name and grade etc.

What are the proposed treatments Chemo, Radiotherapy......?

What are the names of the Chemo Regime?

How many cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night)

How many sessions of Radiotherapy and how long will all the treatments take?

Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Reanswolf
Posted by

Hi

its taken me 3 months to get over the shock of my son having HL. 

But normality does eventually return and the odds with blood cancers are generally good, mostly very good. 

The lymph node system goes round our body so that is why lymphomas often occur in different spots. But the chemo hits it in the same way as it searches out the disease in the lymph node system. 

I know it probably doesn’t help greatly. I suffer from anxiety too, but the initial shock - and that is what it is - does dissipate as your mind eventually starts feeling positive again.

Nick
moomy
Posted by

Hello, 

youve had great replies already, but please feel free too, to check out another charity, Lymphoma Action, which does have a network of support groups and also runs a Buddy Scheme which you and/or your wife could ask for. They are smaller than Macmillan, centres in Aylesbury but very friendly too. You can seek out their website or phone during the week on 0808 808 5555. 

Lymphoma (of whatever type) is really pretty treatable, so please don’t panic but do keep posting too.....

hugs xxx

Moomy

anxious76
Posted by

Thanks so much for the reply Mike. Really means a lot to get someone else’s advice

My wife and I have put together a list of questions for the next appointment with the haematologist and I will be sure to go along to all her appointments with her to make sure we understand all we are told

the waiting is such a horrible time and we are both finding it so hard to focus on other things. It seems every waking moment is spent worrying about the future

We just want to know what we are dealing with so that we can face it and work through whatever treatment options are available and hopefully beat it 

was great to hear your words of support

anxious76
Posted by

Thank you for the information. I will talk to my wife and see if we can look into further support groups

just trying to stay positive

anxious76
Posted by

Thanks Nick. The anxiety is the worst as we are always thinking the worst 

I know that in time we will be more able to cope with the situation but everything seems to raw at the moment. It is like we are at a stand still and can’t seem to move on until we know what is happening

Really appreciate the support and advice

Thehighlander
Posted by

Hi again, Lymphoma is the 5th most common type of cancer and the treatments covering a very high percentage of the Lymphoma types has been used for years with great results. 

The challenge is indeed the waiting but once a plan is put in place the noise between the ears will reduce and you will get back control of how to get through this.

Keep asking your questions as there is always someone around to help out.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Reanswolf
Posted by

I can only explain my personal thoughts, but it is the word "cancer" that is so scary and fills me with dread. Bizarrely, if this was still simply called 'Hodgkin's disease' it perhaps wouldn't feel so bad?.

But it is NOT the same as cancer tumors, and hence the Stage the HL is at (Stage 1 -4) is not as important as with tumours. Even with Stage 4 HL, the cure rate is in the region of 75-80% these days.

They talk about 5 year cure rates if you google it (which we all do). That doesn't mean that 5 years is the expected lifespan, it is 5 years with HL because they don't expect it come back after that - and that relapse is unlikely. So with HL the worse case scenario is better.

You will mourn a sort of shock for a few months, then realise positivity is vital. She has probably had it for several months (as is usually the case), now the treatment will address it, so despite the shock its all upward now.

Medicine has become so advanced and specialised to very successfully treat lymphoma.

Nick
Paul1414
Posted by

Morning Anxious 76.My heart goes out to you and your wife.

I had mouth and Neck Cancer 19 years ago and its been a very long battle I too was young.Your were at least diagnosed quickly and efficiently.I had biopsy and was told at the time go home nothing wrong.We went away thankful and I too got lumps in my neck and i knoew.It turned out the Cancer had gone from my mouth tomy neck.

Even after operation and Radiotherapy I had so many biopsies I was a nervous wreck and panic attack remain to this day.I am now waiting to get results from CT scan for Bowel Cancer this has been going for weeks.I have been alone now 12 years so I have so many emotions going round in my head.

I can't tell you or your wife much but the word Cancer to me after all these years is like me having a cold its so common and i know of 3 friends going through Chemo at the moment.

I think its  fair to say just one day at a time and try to concentrate on that day and make it as nice and pleasant as possible.Do somethings go to the shops go for walks, Guess I am saying distraction does work and helps top up you energy.People cope different itas finding a way.

I hope this helps.

paul

D Paul Bland
johnr
Posted by

Hi Anxious76, some great advice and support so far so rather than repeat I will share something a friend said to me on my diagnosis and that was, someone has to be a good stat so why not you, very wise words once you get your head around it. With HL its nearing 90% who have a positive response to firstline treatment. So ask yourself why should your wife not be a good stat and hold on to it.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Paul1414
Posted by

Still waiting to go back to Registrar at UCH and went to GP and got more tablets but no bowl movement in 8 days was told "thats ok" excuse me its not for me!!

D Paul Bland
moomy
Posted by

Hi Paul, 

Chemo does this to some folk, don’t ignore it!!!

hugs xxx

Moomy

johnr
Posted by

That would not have been ok for my team, rather than deal with the GP can you speak to your specialist nurse as they can arrange medication and get prescriptions for you from the consultant.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are