Hello,
I have been undergoing different tests for lymphoma, the Dr recently said that they need a bigger sample to run more tests but they also said they've narrowed it down to Hodgkin's Lymphoma, - does this mean it is definitely lymphoma but they need more information for treatment or could it still be not cancerous? This is affecting me so i have to tell some people, i would love some advice on telling people about cancer.
Just looking fro support/community!
Hi maddieSEJ and very warm welcome to the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about your ongoing Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well……. I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
I am rather sure that if they have mentioned Hodgkins Lymphoma they are rather sure it is…… the bigger sample will be needed to determine what of the different types of HL this could be.
As I said I have lived with and been treated for two rare types of Lymphoma for over 26 years and I am still here living a great life at 70…… turning 71……. Lymphoma is very treatable.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
When the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Hi Maddie maddieSEJ talking with some trusted family and friends may help you a lot…… but until you have a clear diagnosis and treatment plan keep clear of family and friends who will panic and in turn stress you out.
The most important thing you and anyone you share your news with is that Lymphoma is very treatable with great results….. yes it sounds as though I have had a long and challenging time…… but I am surrounded by friends and family who have life long chronic health conditions that there are not going to improve…… and they are on treatment fir life. I am 11 years out from my last treatment and doing great.
I would advise everyone who are early in their journey to have a trusted family member of friend with you to early appointments as when it comes to Heamatology the information comes thick and fast….. so a second pair of ears can help a lot.
You may also find these 2 links helpful…
Top tips for getting the best from your appointments
Questions to ask your medical team about lymphoma
Always around on this thread or on a thread you put up on the HL group.
