Hi All,
We are waiting for a final diagnosis but it looks like Lymphoma. My Step Dad was originally undergoing tests for Prostate Cancer and was given the all clear by the Dr but pushed for an MRI because he hadn't felt quite right for a bit. Cue a few weeks of tests and biopsy and all sorts of things flung around such as Bone/Blood/Spine etc. He has now been transferred to the Clatterbridge Centre in Liverpool (if anyone has any experience of these guys I'd love to hear it) now and has a few further tests to do to see what we are dealing with and has a heart appointment at the end of this month to see if he can cope with Chemo so just a waiting game now.
I have been extremely lucky in my life and haven't really had any experience with Cancer in the family apart from an absolute badass aunty who beat breast Cancer so this is all quite new for me. I lost my first Step Dad in October (too long to go into but were all actually close as a blended family) so dealing with that grief and this has floored me a little.
My Step Dad and mum are lovely but quite naive so I'm wondering if anyone could please point me in the right direction in terms of getting them the support I know they wont get for themselves and also help me out a bit in how best to deal with all of this.
Thanks for reading.
George
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Step Dad’s ongoing diagnosis.
Lymphoma is inherently difficult to diagnose and will often be mistaken for other types of cancer and only further tests gets the truth.
I was diagnosed in 1999 with a rare skin Non Hodgkin’s Lymphoma and have had years of treatment (hit my name for my story) but I am in remission and doing great so although Lymphoma treatments can be full on, there is lots of encouraging results and lots of hope.
There are actually over 60 different types of Lymphoma!!!!.... so all these tests are necessary as finding the exact one is very important as treatment is not a ‘one size fits all’...... They will also give his presentation a stage number..... it is very important to note that unlike in solid tumour cancers, in blood cancers the high the stage number should not be seen as a worse prognosis unlike sold tumour. In blood cancers the stage number identifies the type of treatment and for how long,
Also important to understand that on the whole you can’t cut out a blood cancer apart from where is danger to life, the normal treatments are Chemo, Radiotherapy and a few other specialists treatments.
The Community is organised into dedicated support groups but as I said there are 60 types so we can’t have 60 groups but have groups covering the main types.
But until you have a very clear diagnosis then I would suggest you stick to this post and I can answer questions then once the type is known we can get you fixed up in the correct group, do remember that there is no one type of chemo treatment for all so going into random groups could be very confusing.
But these are our main group headings.
General Non Hodgkin's Lymphoma
At this early point Information is key so always have a list of questions ready for appointments as this helps reduce the noise between the ears.
State you have a number of questions early on in the appointment.
I work on a 6 Ws and an N set of questions.
What...what type of blood cancer is it? (the exact name and stage)
what is the plan to move this forward?
what treatment(s) are you getting? (The exact treatment name)
Why.... why is this route being proposed?
why is this treatment better than others?
Who.... who have the team discussed your case with?
who are my contacts? (name and numbers etc of your Cancer Nurse Specialist if they have one)
Where, When and how long……
where will this be done, will it involve inpatient stay, how long?
when will this be done?
….. and how long will the treatment be? Number of treatment cycles?
Worry’s...... about the process.....
I have Spinal Osteoarthritis and hours of Radiotherapy did not go together well.
Never....never leave an appointment wishing you had asked an important question!
In normal times I would always say have someone with you to hear what you miss (90%) so do ask if someone can come with you.
But use technology to its full.... hit the speaker button during phone appointments. Have someone sit in on video calls.... and remember you can ask to record everything.
Make sure someone takes him to an appointment and then immediately sit (with a cup of coffee when we can do this) and unpack the meeting while it’s still fresh in the mind.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
I have given you a lot of info so do ask your questions as I am always around to help.
One final thing is stay away from Google.... if you want to read up on Lymphoma check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service
All the very best
Hi again ..... yes there is a lot in my post but you need to understand that blood cancers like Lymphomas, although the 5th most common cancer in the UK, are complicated, requiring a lot of investigations to pinpoint the correct type then subtype.
The next steps are:
As always, I am around to help you navigate your way through this and make some sense of it all.
Hi again ..... “being sent from pillar to post without an real answers” is rather normal when it comes to blood cancers like Lymphoma.
Most if not all folks on a blood cancer diagnosis journey experiences this...... made slightly more complicated at the most moment due to the other pressures on the NHS system at the moment.
He will not get any clear information until all scan and biopsy results are in then most likely put in front of the hospital weekly MDT team meeting see the link below about the diagnostic system.
Do understand that this may still takes weeks for this to all be done, you are going to have lots of time not hearing anything.
A treatment plan being put in place for a blood cancer like a lymphoma is not straight forward, it’s not a ‘open me up and cut it out’.... the cancer is flowing in the blood.
Taking other health issues into account like a heart issues is also important as some of the treatments used are strong, very strong so it’s getting the correct balance of what will work best but reducing long term damage.
There may only be one opportunity to get a satisfactory treatment plan in place and to work 
In the meantime some clear family discussions need to be had.
Due to your Father in Law’s and Mum’s inability to get and retain clear information I think you need to get an agreement from them both that you or another family member needs to be his official advocate.
This then need to be clearly communicated to his clinical teams/GP and put on his notes, this may need him to put this officially in writing.
It may unfortunately mean that your mum may not be able to go to appointments due to the restrictions at the moment..... some challenging conversations to be had.... I was the same with my mum, but we had this put in place through our family Solicitor.
You need to intimate that his advocate will be at every appointment, be put on speakerphone if necessary, have direct phone access to consultants and specialist nurses and receive copies of all results and letters.
Happy to talk more but as zi have always said access to clear information is key for you all to get through this and control the battle between your ears ((hugs))
Blood cancer diagnostic system.
