Hi, today I have had confirmation that I have low grade Mantel cell lymphoma stage 3A.
I have no symptoms apart from swollen neck glands which I have had for approx 18 months.
The Dr says my bloods are normal and with the fact I don’t have the night sweats, rapid weight loss etc I can be monitored rather than treated.
This was such a relief.
Has anyone else been diagnosed with this?
I am Female and 55 years old
3 Likes
Hi @Shahar1993 and welcome to the forum
I am 50 and was diagnosed with a different blood cancer 8 years ago. Like you I was put on active monitoring. This took me a while to get my head around but I know that it was the best decision.
I’m glad you don’t have any other symptoms.
How are you doing? I know I had a range of emotions when I was diagnosed.
I’m glad you found the forum as I know there will be others who can share there experiences which can be really helpful x
4 Likes
Hi Nichola,
I think I may actually be relieved to finally get an answer to all the tests and know what’s going to happen if I’m honest. It’s been a long 10 weeks waiting.
Although it takes a lot to get my head round “incurable, but treatable”.
I was really worried about having to lose my hair. I know that’s really daft, but it really scares me and I’m not even a vain person or one who loves messing with hair! So the no treatment approach came as a huge relief! For now anyway.
I sadly lost my mum 2 years ago to ovarian cancer and my dad this February, he had Chronic myeloid leukaemia. I know that’s a totally different blood cancer to me and the Dr explained it works totally different to mine.
My dad died unexpectedly in his sleep which was a huge shock so I haven’t had a great 2 years dealing with cancer.
My other and biggest worry is I have custody of my grandson.
He’s now 9 and is my world and I am his so the thought of having to tell him and leave him behind being so young emotionally kills me. When my dad passed away my grandson said to me “nanny when you die can I be cremated with you!” It breaks my heart just thinking about it so “ active monitoring suits me perfectly as I don’t have to tell him anything at the moment as I’m not poorly with it and don’t have any symptoms that he would really notice as my hair is a shoulder length bob so hides the lumps nicely.
I hope you are keeping well. Thank you for coming back to me. As you can probably tell I like to talk so I hope these forums will let me vent when I need to and in return be there to help others too.
1 Like
This is definitely the right place to be if you need a chat and a place you can say how it really is for you. I have learnt so much from the other forum members and don’t know where I would be without them.
So much of what you say resonates with me and will with others. All those thoughts and fears are so natural and waiting - well that’s what I hate to!
Your grandson sounds amazing and the bond you have sounds so special. You will know when it’s the right time to speak to him.
You have had so much to deal with over the last two years. I hope you have somebody to support you to?
I’m doing ok thank you. After an op and radiotherapy 8 years ago, I have been on active monitoring. My children are now 19 and 16 and I still find it difficult if I think about having to tell them I need treatment again. But I know there is lots of support out there to help me through if I need it.
I’m glad you found us and look forward to hearing more from you on the forum.
Nichola X
Thank you. Yes I have my husband and a lovely family around me as support.
My grandson really is wonderful, as are my other grandchildren, but as he has lived with us since being 6 months old he feels like he is ours so I can’t / won’t leave him at such a young age. Plus I want to get my state pension in 11 years! I’ve paid enough tax over the years 
.
I don’t do well with the “unknown” and “what ifs” so this is where I am going to struggle with all this until I learn to accept this is now my new norm.
I’m so pleased you are stable if that’s the correct wording and been able to be monitored for so long.
I’m hoping and praying I manage to stay like that for the foreseeable too.
1 Like