Lymphoma identified in testicle

Hi again Sweyn and well done navigating across to this corner of the Community.

With the nature of Lymphoma people don’t tend to stay for a long time on the Lymphoma groups due to Lymphoma being very treatable so we help them through the diagnosis and treatment stages and they tend to move with life……. But let’s see who has had NHL in the testicular area and are still looking in.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available.

But with over 60 types and sub-types of Lymphoma it is important that a clear typing is done…… this may have happened?

I was with Dermatology for my first 14 years then when things kicked off I was quickly moved to Oncology (2 weeks) had my Radiotherapy then off to Heamatology (about 2 weeks)…, so once you get to Heamatology they will want to pinpoint your type of NHL….. let’s look for this appointment to come done but I would suggest that you call the department that did your Heam referral to ask how long - keep the NHS working for you.

Heamatology is very scientific….. and at times confusing so these two links will help.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Keep away from mindless searches of Dr Google….. it will take you to dark places… stick to the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

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.

Always around to chat 

Many thanks again Mike, your experience and advice is incredibly emboldening for someone such as myself. 

As soon as my wife returns from work I will show her the thread as I feel it will also greatly assist her.

I'll keep you updated and will chase the appointment on Monday.

As you may have looked through my cancer story you will see that even in the most desperate times there is lots of hope when it comes to Lymphoma…… and HOPE stands for Have Only Positive Expectations

Good morning, just had my first appointment through for Haematologist a week today. To be fair the Urologist who referred me picked up a bit of worry from me from his medical secretary. He phoned me yesterday to explain and reassure further. He explained the testicular lymphoma had been fully examined and typed as B Cell. Additionally after a bit of 'waiting wobble' yesterday I spoke to lovely lady at Lymphoma Action. She was absolute first class, she gave me incredible reassurance that the feelings I was experiencing were entirely normal and most importantly explaining that I should not be hard on myself by thinking I should be stronger and coping more positively at this very early stage. Just like Mike the Highlander a very empowering individual to come into contact with.

Hi again Sweyn good that you have had reassurances from both your urologist and especially on the Lymphoma Action Helpline…. I have volunteered with Lymphoma Action for a number years including as a Buddy and on their support Platforms…… I will feed back your appreciation to the team.

Now get your questions ready for next week - this can be done

Hi Sweyn

I hope you’re doing ok? 
My husband’s story is very similar to yours. He found a lump in his left testicle in February. Ultrasound scan found a large mass and he had the testicle removed mid March. We were convinced it was testicular cancer as that is what the drs were thinking. When he was called in for the results we were so shocked it was lymphoma.

we had another couple of weeks wait for referral to the Haemotology department but everything happened fairly quickly after that as my husband had begun to feel quite ill. Up until that time he’d had no symptoms apart from the lump.

He’s had 4 cycles of R-chop chemo and it is tough Sweyn but there’s so much help available for any symptoms.

1.  He’s also had 2 lots of spinal methotrexate to hopefully stop the possible spread to the brain or nervous system. I think I have this right.

Good luck with your treatment 

Hi my partner was diagnosed with the same last October. He has now finished his 6 cycles of RCHOP chemo has had one intensive methotrexate dose to minimise brain metastasis and 3 weeks of radiotherapy. 
he is self employed and has continued to work at least half of the time! He has also thrown in the occasional game of golf. 
he was completely thrown and terrified by the diagnosis ….but has found for him…that working has helped . Obviously well supported by myself. 
It is rare..it is scary…but he has come out the other side.

you can do this.

We wish you well .

Also please feel free to contact me with any questions along the way, we felt so alone not finding anyone who had testicular lymphoma. 
you are now not alone! 

Hi

Thank you so much for your message. It helps us both so much reading posts from people that have gone through this.

My husband is retired, the downside of this being that he has a lot of time to dwell on things! Luckily his friends and family have been good at keeping in touch by WhatsApp etc but he doesn’t want any visitors as he is really scared of coming into contact with any germs, which I do understand.

I’m sending very best wishes to you both