My mum recently had what we thought was a polyp removed from her appendix. This was found to have lymphoma. She is due to have a pet scan. All I know is it was “low grade”.
Can anyone give me more info on this, is it really rare because of the location it was found?
I am so worried what the pet scan will find.
Just wanted to add she is also aneamic so this could be bad news regarding stage?
I have just given birth to my longed for baby 3 weeks ago (after multiple miscarriages). I am an only child so dont have any other family around me. Just dont know how I will get through this if I have to see my Mum suffer.
Oh @WorriedDaughter, welcome, your name really says it all and I think that is so natural
I am so glad that you have found us and you are now part of our forum family.
We cannot tell you what your mum’s diagnosis might be.
As you have described we are all very complex beings and in making a diagnosis, medical people take lots of things into account in their diagnosis and treatment or not.
I was diagnosed 19 yrs ago with a leukaemia and I have been a very lucky girl and always been on a regime called active monitoring (or called watch and wait) and have tests every 3 or 6mths.
You say you are worried what the pet scan might find. Very personally I would rather know my condition than worry about what I might or might not have. My imagination goes mad in all directions with ‘what might be’, ‘what if’ etc.
You also have so much going on having just given birth to your longed for baby.
Usually mum’s are still recovering and their hormones, thoughts and emotions are all over the place at this time.
You must be pulled in 2 directions at the moment.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
The main thing is that you really look after yourself and enjoy your baby and your mum being a Grandmother and all of you be very kind to yourselves.
Now I realise this is so hard but try and keep it in the day.
Please do keep posting I look forward to hearing more about you all.
I too have low grade lymphoma. Low grade means that it is slow growing. If it’s not causing any problematic symptoms her doctors may well recommend that she goes onto “watch and wait” status (ie active monitoring through periodic blood tests and checks for lumps or bumps). Unlike solid cancers such as breast cancer, with lymphoma and other blood cancers, it’s better to stay on watch and wait status and only have treatment when it’s really required.
The PET scan will show which areas of the body the lymphoma is in . They may also suggest doing a bone marrow biopsy to see if lymphoma is in the bone marrow.
Staging in blood cancers is also very different to solid cancers - stage 4 lymphoma is still very treatable (many blood cancers are diagnosed at stage 3 or 4, I was diagnosed at stage 4).
Low grade lymphoma is typically treatable but not curable as it is likely to return after treatment but often many years apart. (Some high grade , which is fast growing/aggressive lymphomas , can often be cured with treatment)
I am sure your Mum will be around for many years yet to enjoy life with the wonderful gift of her grandchild . Try not to worry too much as she goes through the diagnosis process.
Thankyou for replying. And I hope you are doing well.
When you say solid cancers, she did have a mass removed which was believed to be a polyp, however thats when they found lymphoma, it was in the appendix but also very close to the bladder. So I am a bit confused if lymphoma is just the blood why did she have the mass they removed?
Oh @WorriedDaughter that is definitely a question for your mum’s medical team as they know your mums whole medical history.
I need to write all my questions down as I walk into a medical room and my mind goes blank, I am the same with phone calls.
It is OK to be confused we are not medically trained and this is all new to us.
Be kind to yourselves and please do keep posting
As Erica suggested, you need to ask your Mum’s medical team for the details on her operation and their diagnosis.
Just fyi that blood cancers are a collection of cancers, including lymphoma , which affect blood, bone marrow (where blood cells first form) or the lymphatic system (so sometimes lymphoma can show up as lumps ).
Good luck to your Mum on getting to the bottom of her diagnosis.
We are still waiting for the results from my Mums PET scan.
My mum did have very early stage breast cancer around 12 years ago, after mastectomy and radiotherapy she got the all clear.
Does anyone know if finding the low grade Lymphoma as a mass near the appendix, could be that it has spread from somewhere else in the body? And it isn’t just lymphoma? I know she needs medical advice but I am just wondering if anyone knows more.
Oh @WorriedDaughter it is so hard not having reasons and answers, but it really is your mothers medical team, who know her whole unique medical history, who might be able to help you.
Please do let us know what they say and how you get on.
Look after yourselves and take lots of care.