Hello

Hi Michela Michela108 and a warm welcome to this corner of the Community although I am sorry to see you joining us, I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Getting a cancer diagnosis is never on anyone’s radar….. but I will say as some initial encouragement that Lymphoma on the whole is very treatable with great results…… and that coming from someone who has a 7 in a million rare type of Lymphoma.

The group is here to answer questions and give you support.

Where on your diagnosis/treatment timeline are you at the moment?

So nice to e-meet you. Thank you so much for your reply. 

I have just been told on Wednesday but I haven't been told the therapy yet, because I was in the lung team, at the start they thought I have a thymoma, because I have a mediastinal mass of 6.5 cm. After the lymph nodes biopsy they understood it is a Hodgkin lymphoma and I have now to meet my new team. 

This Wednesday I will know when the therapy will start and for how long. They gave me leaflets and there was the Macmillan booklet, so I decided to write here. 

️ have a lovely weekend everyone 

Hi Michela, your journey to diagnosis is not that unusual. Lymphoma at times is very difficult to identify and folks often find themselves in other areas of a hospital and it’s not until clear biopsy pathology comes back that the real truth is found out.

I am assuming that you are going to Heamatology on Wednesday?…… you are going to get a lot of information so I highly recommend that you have another ‘pair of ears’ with you to ensure that there is a clear understanding of what the way forward is going to be like….. there are various treatments and these will be selected to fit in with ‘your’ HL presentation.

This link Questions to ask your medical team about Lymphoma will help you put down the top questions that you are looking to get answers for….. put these questions in a note book and make sure you ask your questions and take note as to what you are told….. clear information helps reduce the noise between your ears.

I would also highlight that it is VERY important to have accurate information with regards to contact/names/numbers (often for a Cancer Nurse Specialist - CNS) for reporting in any issues, asking questions and especially looking for help during out of hours and weekends.

At this point in time you are a passenger, there is nothing you can do to make the road before you any quicker or simpler….. the one thing I will say is do not do random Google searches…. For good up to date accurate information your go-to place is the Lymphoma Action website.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

As a way of some encouragement you may want to listen to this link Kicking on - Robbie Fergusson.

I also volunteer for Lymphoma Action. Back in Aug 2021 I did a Lymphoma Voices Interview with Robbie Fergusson who was diagnosed with Hodgkins Lymphoma back in 2013 at the age of 20. Robbie goes on to talk about his diagnosis, treatment, recovery and eventually getting back to playing professional Rugby Union, playing for the Scotland 7s International Team and representing Team GB in the Rugby 7s Team at the Tokyo 2020 Olympics.

Always around to chat ((hugs))

Thank you for all links, this is very useful

Hello Michaela,

I hope you’re doing okay. I wanted to reach out as our journeys are similar. I like you have a mass in my chest and currently on my 3rd biopsy to get a solid histology. 
how are you feeling? I echo what Thehighlander has advised, write down your questions and take someone with you. Look after yourself with good food, hydration, sleep and smiles. Keep smiling when you feel you want too. This journey is crazy. But the up days are really optimistic and you will have emotional days.

I’m 40 and going through egg preservation at the moment before a treatment path is ventured. That brings on other hormones, hot flushes etc, it’s hard to know what symptoms are what at times!

if you would like to chat, please reach out.

Sarah 

Hi Sarah,

Thank you so much for your reply. Nice to meet you

I will start with chemioterapy on Friday. They told me I have a Hodgkin lymphoma stage 2. I am 40 too and they asked me if I want to preserve my eggs but I said not because i really want to start the therapy asap.

I feel good most of the time, only a bit afraid how the chemo will affect my body in the daily life. I don't know anyone that had it, so I only watched videos of patients online and all the videos I have been given to watch by the hospital.

And how are you getting on? I am here to chat too whenever you need.

Michela 

Good Morning, 

Wow Friday, I’m pleased for you to be on a path of treatment.

I flew back to the UK mid November and still haven’t started anything as such yet so that’s good you’re already underway as such. Not sure how long you’ve known but from your message on here, fairly recent?

Hey here’s to the 40 year old gals over here! Smashing this out and getting back to it. 
I’ve also found the support group for Hodgkins Lymphoma good on FB. 
My main support comes from those I meet day to day that have been through this already or cared for someone that has. I think it’s important to also surround yourself with those real stories as google can be hard to navigate and I’ve personally found quite hard mentally for me. 
I also knew of nobody that had Lymphoma. I’ve been a paramedic for 16 years and even in my line of work, Lymphoma wasn’t mentioned specifically, more so broadly speaking cancer. 

Since diagnosis and talking to people I meet in coffee shops or having my eyebrows done - everyone seems to know someone. 

Please let me know if you’re happy to share what treatment you’ll be having as it might well be what I’ll have too.  

Sarah 

Hi again Michela108 you may find this link helpful > Top Tips for the day of your Chemotherapy as it’s a collection of top ropes from people on the various Lymphoma Action Support Platforms.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

As you know so have a different type of Lymphoma that required a different treatment approach …… yes there may be challenges but keep remembering that this part of the journey is temporary and it will pass.

All the very best with your treatment ((hugs))

I started my test journey in October with an x-ray. Then CT scan and at the start of December I had my PET scan that showed cancer activity not only on the mass bu also on the trachea lymph nodes. I had my biopsy for Christmas and it showed Hodgkin lymphoma. 

I will have 4 cycles of ABVD and 3 weeks of radiotherapy. 

I will keep you informed how it is going. Keep me posted with your journey too ️

Thank you so much Highlander, I will for sure look into it, it is exactly what I was looking for. I wanted to talk with someone that is going through the same therapy ️

Thank you  this group is so helpful