Hi, I have just been diagnosed with stage 3 mantel cell lymphoma. I am due to see the Dr on Monday, but I saw the results from my PET scan with the diagnosis on Wednesday.
I was in belief from a previous CT scan and Ultra sound that it was low grade lymphoma so the new diagnosis has come as a shock.
I’m 55 and have custody of my 9 year old grandson so am petrified of what’s going to happen and the thought of telling him is breaking me. I know I shouldn’t google, but it’s human nature isn’t it and to read the prognosis is 5-10 years is unthinkable.
I’ve read it’s a rare cancer and usually affects more men than women and generally older so trying to get my head around that to as I’m a 55 year old Female!
I don’t have any symptoms apart from the lumps in my neck which I went to the Drs about a year last April, was given a blood test and told all fine.
I went back again this year as they were still there and was sent for an ultrasound scan on the 1st April and within 2 hours it was all systems go. I’ve had bloods, 2 x chest x rays, CT Scan, neck biopsy and a PET scan so far.
Any information that anyone can give of what to expect would be really helpful. I definitely cope better with facts than living with the unknown.
I so wish I hadn’t seen the diagnosis on Wednesday before seeing the Dr as my head is all over the place now with worry about my future and Monday seems so far away!
Hi Mumof4boys and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis...... this will have all come as a shock but lets look to get your mind in the right place.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million - 400 in the UK) 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 - 200 in the UK) 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.
Mantle Cell is just one of the 60 types and sub-types of Lymphoma and it tends to act like a fast growing High-grade non-Hodgkin lymphoma but some folks have a form that grows more slowly...... like many types of Lymphoma...... just like my first type of NHL it tends to come back from time to time...... I actually relapsed multiple time over my first 15-16 years...... but my first type is very unusual.
Yes around 600 people are diagnosed with mantle cell lymphoma each year in the UK....... but it is more common than both my 2 types of NHL........ and yes it tends to affect certain groups of people...... but with Lymphoma there are no definitive lines.... so you having this is just down to how the hand has been dealt but does not change the way forward.
But it is very important that you get at the very start that there is lots of hope....... and that Lymphoma is rather a different type of cancer compared to most other cancers...... actually Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)..... but we have lots of treatments and even more hope.
Most of the information that you can read is more than often way out of date....... often 5 years out of date (this is the regular review time slots) so does not allow for the development in treatment and the effects this has on how well people do when on treatment.
In way of some encouragement....... when I was first diagnosed in 1999 our 2 daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters…..
I turn 70 at the end of this year and as a family we just celebrated 9.5 years since my last treatment. I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
When you read stuff that puts a prognosis to be 5-10 years....... you have to read between the lines. Statistics are not straightforward........ and more importantly you are a statistic of 1..... you will live your story,,,,,, not someone else's.
Stats are looked at in 5 year slots and are based on a wide range of factors........ but in the here and now...... I have talked with many folks who were diagnosed with Mantle Cell who are 10, 15, 20 years post their last treatment and living normal lives.
Another VERY important thing to get with Lymphoma is Staging....... Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis....... in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
You need to get ready for your next appointment so get a note-book and start to note down your top questions you need answers for......... the links below will give you some help in doing this.... and if you can try and have someone with you at the next appointment..... 2 pair of ears hears more.
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
It is very important that you to get accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
That's enough from me....... have a look through the links I have given you and do get back with any questions you want to ask....
The most important thing you need to do is see that this is very treatable ((hugs))
Sorry to hear about both your mum and dad……. Solid tumour cancers like Ovarian and even although CML also being a blood cancer…….. Lymphomas are still ever so different…… so lots of positives in this for you.
My story is indeed rather complicated (See my story) but this is due to me having 2 rare, hard to treat T-Cell NHLs come together at the same time…….. but even although this made things complicated……. it still was doable.
Remember, any questions just ask..
Just for context, are you in the UK?
((hugs))
Sorry for the delay in getting back to you….. we have one of our 4 granddaughters (11 year old) staying for a few nights as our daughter is away to Glasgow with 15 friend's doing the race for life cancer charity 5k mud run…. It looks like there is a lot of washing coming home to Inverness ;)
The reason I asked where you stay is once you have got through Monday and have a better understanding of the way forward I can give you some more information for you to get support ((hugs))
