Hi All,
I’ve joined this group as my mum was diagnosed with NHL B Cell in January 2020.
Before I get to the issue over the diagnosis a little background:
My mum was taken I’ll first with Colitis (ulcerated left side) diagnosis Oct 19. This illness took its toll with constant diorhea and the medication prescribed was only a low dose. She became so unwell that she needed more & more help through the day. I would visit & stay over at this point I noticed she was having really bad night sweats, so bad I would change her night clothing through the night. During one night when I wasn’t there she had a fall and ended up in AE at this point it was treated as a trauma and she was given a CAT scan. The results from this were:
Enlarged spleen, enlarge lymph nodes in thymus area and a thickening of the womb wall. We were told not to worry and that she would probably need an ultrasound scan to check these out.
My mum was admitted, on the third day she wasn’t at her bed at visiting time and we were told she had gone for an ultrasound scan. When she returned in a wheel chair she looked upset, she was upset and she was crying! I went to the nurses station where I was told that the Doctor would speak to me in a room. I went into a room with the Doctor and he explained that she had had an ultrasound guided biopsy as there was a large lump under her right arm pit.
This is when we were first told that they suspected Lymphoma! Complete shock! Tears! Then gathered myself together to face my mum in the ward!
Two days later she had an ultrasound to investigate the womb, result found thickening of wall of womb and a 2cm mass.
The next day she had an ultrasound on her neck and throat. Results showed classification U3 lymph nodes (this was on the discharge letter).
Mum was discharged early Jan 2020 and went to see the consultant in mid January where he confirmed NHL B cell and said it was a highly aggressive type. I had a private chat after the consultation where he said without treatment Mum would have 3-6 months at best! You can imagine the shock!
We as a family decided not to tell our mother of the timescale and as she had not asked the consultant so we assumed she didn’t want to know. A few days later we received the consultants letter confirming the diagnosis and stating that “without treatment .... only a few months” My mum had declined Chemo and the consultant requested she go home and think about it and return in two weeks to speak with him again, where he would ask the question again ref chemo and if she still didn’t want it he would refer her to the palliative care team.
We returned to see the consultant two weeks later. During this consultation he explained that he had had my mother’s results looked at again and actually they now felt (haematology team) that the lymphoma was LOCALISED and STAGE 1 not STAGE 4!!!!
OMG you could have knocked me down with a feather! We were in shock and we left full of glee and delight that actually mum wasn’t going anywhere in the next 3-6 months!!! BUT really I was blind sided and didn’t ask the questions that I now need answers to!
Mums diagnosis as is stated on the newest letter is Stage 1 B cell NHL but how can they go from stage 4 to stage 1?
what about the thymus lymph nodes?
what about the 2cm mass in the abdomen?
what about the very thick wall lining of the womb?
We have not had any explanations at all! Could it be that the Colitis which is an auto Immune illness influenced the lymph nodes? Could that be a reason for the test results being misinterpreted for stage 4 lymphoma?We just don’t know!!
Now mum has lost weight again, night sweats have returned but not every night. She’s so pale, her eyes are sunken, she can’t do daily things like get dressed on her own. She has caters coming in 3 times a day. She is fatigued. She just doesn’t look well! Also she’s recently had a very bad chesty cough, which is now clearing up. She is unstable on her feet and uses walking aids. She is on oral steroids but this last week even those haven’t perked her up.
The family now are questioning the diagnosis! Is it stage 1 or not? We have so many questions and really don’t know how to proceed. Our next consultation is end of March.
Has anyone else ever experienced such a turnaround in diagnosis? Does anyone else think that it’s a bit questionable?
looking forward to getting some reassurance and/or advise from the members of this group!
thank you for reading!
B
Hi and welcome to this corner of the Community but so sorry you had to find us and sorry to hear about your mum and good to see John has picked up on your post.
Lymphoma is very hard to get the diagnosis just right and I have talked with many folks who have experienced this confusion - it just happens. It is hard even for the professionals but Consultant Haematologists are very experienced in all things blood cancer so good that she is under a Heam team.
On the whole the stage numbers are not as big a deciding factor about prognosis unlike in solid tumour cancers, it’s more an indication as to what needs to be used to treat the presentation and for how long.
Obviously where there is activity in any major organ this can change dramatically :(
Lymphoma on the whole can not be cut out as the cancer cells can be every where in the body so it is normal to use chemo to break down tumour build up actually melting them away and ensuring that any cells hiding in the body is found. Radiotherapy can also be used in some cases - I had both for a another type of the 80 versions of NHL.
How old is your mum?
The fact that the appointment is the end of March does suggest the severity and need for immediate treatment has reduced but who knows.
You could call the clinic to see if there are any cancellations...... and with ‘the’ virus going around some folks will be cancelling appointments..... but as John says you can ask to talk with the Clinic Cancer Nurse Specialist.
You have identified many questions so these need to put into a note book along with any other questions that come along so you are ready fir that appointment.
NHL on the whole is very treatable, yes hard work but do-able.
You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.
I was diagnosed in 1999 and went through all the stages including 4a2 and I still around - hit my Community name to see my and other people’s stories.
This journey has just began so keep posting as we will help as best as we can ((hugs))
Hi we can all see your reply so no need to post the same thing.
If you want direct a reply to a specific person just put “Hi John” at the start just like a letter.
With regards to chemo, I had a slightly different chemo from R-CHOP being R-EPOCH.... it was a slow but strong hit to get my condition under control for moving onto my next treatments.
Each treatment was 120hours x 6 cycles, far more extreme than many of the other treatments and honestly,..... I was never sick once, never had any real bowel problems, yes, to my hair going and fatigue.
Over my many times in hospital I have meet many 80 somethings go though R-CHOP or CHOP with no issues..... but her other medical challenges do need to be put on the scales with assessing the benefit verses side effects verses quality of life.
You do need to take with her team ASAP as at this point your are walking in a tunnel with no light - give them a call on Monday and put your pointy elbowed into the system ((hugs))
Hi Fiona , due to them changing her stage you do need to get clarification why this was done and yes, you need answers for all your questions. If you don’t ask you may regret not asking.
In my case my information was sent out for review by other experts without asking my team - they did it without me asking as we are not a cancer specialist centre. So it depends on where she is being treated.
You may need to try and understand why your mum has made her decision, has she taken the first thing that has been said as folks this age can do or have there been other family and friends go through cancer treatment and have a bad time.
((Hugs))
