Watch and Wait

Hi Brave Face Is Exhausting and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma (MCL)....... 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 - Not Otherwise Specified 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 prefer the more positive term Active Monitoring over Watch and Wait. The term W&W implies that nothing is being done...... but Active Monitoring is actually seen as treatment when it comes to Lymphomas as you are being looked after and assessed as to when the best and most effective time is to treat.

In my case it took 14 years...... yes 14 years before I had to have full on treatments although I did have skin treatments as my rare type of CTCL is actually a skin Lymphoma and my skin looked like I had bad Psoriasis..... you can see my full story by hitting my community name Thehighlander 

As for MCL....... non-Hodgkin lymphomas are divided into fast-growing (high-grade) lymphomas and slow-growing (low-grade) lymphomas.

MCL is unusual because it often has features of both High and Low Grade. Mantle cell lymphoma usually grows quickly, like a high-grade lymphoma but some people have a form of mantle cell lymphoma that grows more slowly.

Like my CTCL, your MCL is likely to come back (relapse) after treatment and need more treatment. This is how low-grade lymphomas react...... I relapsed multiple times over my first 16 years.

..... yes very confusing I can hear you say!!!........ but I have talked with folks over my years helping on here and on the various Lymphoma Action - Support Platforms where people with MCL have went years without treatment.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

What spacing have between clinics?......... this is often an indication as to what your consultant is expecting. I had 6 monthly appointments for my first 14 years but when I did have skin treatments my consultant did drop in past to see me during treatment.

Always around to chat.

Thank you for the response. Yes, I generally refer to it as active/regular monitoring as opposed to W&W.

I am currently on 3 months in between appointments.

Have recently had a short course of low-strength radiotherapy to address a growth in my mouth. Was my choice, which felt very important for the first round of treatment to be on my terms - gave me some sense of control…..

When were you first diagnosed?….. 3 months is on the short side so it suggests that your consultant is keeping a close eye on you….. but this is good.

As you said each case is different and this is the case with identical types of NHL….. the longest ‘partial’ remission I had over the first 14 years with my CTCL was about 9 months….. shortest was about 3.

My consultant said that a lot of these low-grade NHLs basically go to sleep for periods of time and something like an infection or ‘other’ illnesses can trigger a relapse.

He said that our immune system is basically working 24/7 on keeping our NHLs asleep so when an infection comes along our immune system will often see the infection a great risk so will put more resources into doing this…. unfortunately this can leave the back door open for our Lymphoma to wake up….. it is all a balance.

There can be a tipping point in treatment when things develop to the point where significant treatments have to be employed…… that was me back in late 2013. This comes with significant risks but at the same time significant benefits.

I am 3 months away from being 9 years out from my last treatment, I turn 68 this Nov and I am doing great.

I was diagnosed end of January, so still fresh. Fortunately (I guess), I one of the 10% who has the slow growing variant which won’t require immediate treatment.

Mike, it is very positive to read your story. 

The up side in all this is that even although Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) there are lots of treatments are available when required.

Even when it comes to Staging….. in Lymphoma it is rather different from all sold 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.

Early on in my journey my great Cancer Nurse Specialist advised me and my wife that living the Lymphoma life is all about not allowing the Lymphoma to define us but for us to define how we live and not been controlled by the Lymphoma…. It takes time but can be done.

Brave Face Is Exhausting said:

Mike, it is very positive to read your story

We all do what is needed to navigate the journey