Husband just diagnosed with FL low grade

Hi Wifeinne and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husbands diagnosis. 

I am Mike and I help out around our various Lymphoma groups. 

First it is important to understand that this Macmillan Community is predominantly UK based. Macmillan Cancer Support is the main UK cancer support charity but we do from time to time have folks join us from around the world including the USA….. 

The other important thing to understand is that there may well be differences in how the medical system in the US works compared to our National Health System (NHS) where a very high percentage of all treatments are covered by our central tax system with a very small amount of people using Private Health cover.

I don’t have Follicular Lymphoma (FL) 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 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.

In the UK the goto person for Lymphoma would be a Haematologist and most people will only see an Oncologist if Radiotherapy was required…… and even then with some of the 60 types and sub-types of Lymphoma a Dermatologist is the first point of call….. this was me back in 1999….. my story is rather complicated so you can klick on See my story to see my story.

Please don’t get hung up on staging…. Staging in Lymphoma is rather different from 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.

The other mindset you ‘may’ have to come to terms with is that with some low-grade NHLs like your husband’s FL he may not need treatment immediately and the patient is often put on what is called Active Monitoring (Watch and Wait)  until such times that the patients condition has progressed to a point where treatment is needed and will be most effective….. I have talked with people who have FL who have not had treatment for years with some being 10, 15 even 20 years post diagnosis and not required treatment - yes that is a mind blowing thought.

As you get ready for his next appointment you may find these two links helpful as they help you get the best out of these important appointments.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

All my links are taken from the Lymphoma Action website. 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.

Unfortunately all their support platforms are only for people who are UK based but there must be something similar in the US for you to connect in with.

I am sure that you will have lots of questions so do ask them……. but in way of some encouragement…….. as I said I was diagnosed way back in 1999 age 44 with my first type of low-grade NHL (your husbands FL is also a low-grade) when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 my second type of more aggressive NHL came along taking me to stage 4……. but this was all still very treatable.…… but over these 25 years we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 in Nov and as a family we celebrated 9 years since my last treatment in Oct.

I am living a great life and we continue to look forward to what else life has in store first us to enjoy…….. this can be done.

((Hugs)) coming all the way from the Highlands of Scotland

Hi Wifeline

I was diagnosed with stage 4 FL about 18 months ago aged 53. Scary times, but I've had 18 months to get used to it and things seem a lot less bleak today than they did 18 months ago. I've been through 6 cycles of chemo and 3 maintenance cycles and the side effects haven't been too bad. The treatment these days is very targeted and the oncology teams are really helpful and knowledgeable. 

Try to stay calm at this stage. Things get better over time.

Regards, Cormac 

Hi Mike,

I have read your reply over and over because of the amount of relief it brings me. Thank you so much.

I didn't realize that even with stage 3-4/with a symptom that "watch and wait" could still be an option. My husband's ENT (Ear, Nose, Throat) doctor, who diagnosed him, has said that he will wait for the Oncologist to tell him if removing the lymph node is part of the plan. Is that a common option? I realize protocols may differ in the UK. 

I'm starting to allow myself the optimism that this may be a hard part of our journey but not the end of it. I will certainly look at those helpful links and continue to research resources closer to home.

Again, thank you so much.

Zoe

Thank you, Cormac.

Hearing that you responded well to treatment is very comforting. My husband is very active, in otherwise good health, and mentally/emotionally our rock. He joked after our last doctor appointment that he may not be the best at living but he's great at surviving. ha. I think he's good at both. If you have any suggestions on how I can be the best support, I'm open to anything.

Thank you so much,

Zoe

Hi Zoe Wifeinne I am glad that my simple information has been helpful…..

Taking out a lymph-node is often done for biopsy purposes but as he has already been diagnosed there may not be a need for this to be done…… removing the node does not necessarily remove his FL as this is a blood cancer and it can be in other areas of the body but again this is not a significant problem.

Hi Zoe

Sounds like we're very similar. I try to keep myself active and am in good health otherwise. Being healthy and positive makes a huge difference to treatment (I believe).

My wife was really scared at the start and seems a lot better now. I had to accept that this was harder on her than it was on me. I was pretty relaxed and tend to always be positive while she couldn't really understand how I could stay upbeat. Seeing my wife more relaxed made things a lot easier for me. So only suggestion would be to try to stay positive as well and support him. The less he has to worry about you the better.

Regards,  Cormac 

Hi Cormac,

It does seem you two are very similar. He's cool as a cucumber from the outside. But he has told me he still has fear, he just wants to wait until we have more information. He doesn't want to over or underreact. I've saved my meltdowns for when he's not around. Luckily, he has told me that it doesn't make it worse for him when I cry (I may have slipped up for a minute during the doctor appointment). 

This is hugely helpful advice. If I look at being relaxed as my duty to him, it makes it that much easier.

Thank you again,

Zoe

Thank you, Mike. I think there's a possibility they will do a full excision in the attempt to make sure all tissue is tested? They did take two samples when they biopsied, which came back with the same information so it remains to be seen. I think he's also sick of looking at this lump on his neck (the least of my worries!).

Thank you, again, for all the information and taking the time to help me.

Sincerely,

Zoe

Zoe…. as Cormac has said and I totally agree, that our family members has to navigate as hard if not a harder journey than those of use with the Lymphoma.

Part of my treatment had us down in Glasgow for 2 periods of time for a total of 11 weeks……. we live up in Inverness so this was a 7 - 8 hours round trip away from hime, family and friends….. so over the 2 years of my main treatment we must have done the journey 25 times - 6000+ miles….. and as I was not able to drive during this time my wife was doing this and made worse during the winter she had to navigate the journey in the snow

You may find this link helpful…..Top tips for family, friends and carers

Thank you!

I, of course, would never have said I'm in a harder spot but it is very helpful to have the pain of being a partner acknowledged. I will definitely give the link a read.

Sincerely,

Zoe