Watchful waiting v. early treatment in Follicular Lymphoma

[Shar0n]

Comparison of practice and outcomes:

medpagetoday.com/resource-c...

[laylalulu]

Sounds complicated in some parts but I'm gathering WW is a good thing right? My biggest fear with the healthcare system is falling through the cracks. I go every 3 months for bloodwork, I have heard nothing from my doctor since my last appt which he says everything looks good, I'll see you in two years. No scans just bloodwork, I've never seen a bloodwork report. I just trust someone is on top of things . Should I be asking to see these bloodwork reports? Can I trust that bloodwork will show any recurrence of the cancer? It's a big worry by times. Anyone have any experience with this disease sneaking back up on them without symptoms or bloodwork being ok? Thanks

[Shar0n Volunteer in reply to laylalulu]

"Anyone have any experience with this disease sneaking back up on them without symptoms or bloodwork being ok?" That's an interesting question. I have blood tests every four to six months. I know they look for markers of inflammation - one being C Reactive protein. They also look for changes in nos. of white and red blood cells. I generally take my doctor's word for it that the blood work is ok. I think the symptoms of progression including night sweats, unexplained pain maybe indicating an enlarged node causing a blockage or pressure internally would be a red flag.

The only way to know for sure is to be scanned frequently, which of course exposes us to unnecessary radiation, maybe leading to another cancer further down the line. Maybe someone else will come up with a better answer.

[Still in reply to Shar0n]

It is 4 yrs since my last RCHOP treatment. Every pain, itch and temp is lymphoma, in my head..but it hasn't been..attentive is good..anxious is a time thief..I am learning to Breathe and move ..keep the appointments and treasure the days. I hope you can as well

[laylalulu in reply to Still]

Sometimes I feel that way and it does make me anxious I want to run off to doctor and ask for a scan, but it doesn't usually last that long and I move on. Thanks

[jmcobb50 in reply to Shar0n]

I have been on W&W since August 2015. I do have all my lab reports, CT reports etc. I started with Labs, CT & see the oncologist every 3 months but now labs every 3 months and I can see them on their portal & print them and a CT, labs and see oncologist every 6 months. I suspect if everything remains stable he will do CT annually. As above there are markers such as LDH but my oncologist would also look at me clinically. I also got a 2nd opinion on W&W who agreed with the strategy

[jack23 in reply to Shar0n]

Hi, I have been on watch and wait now for 9 years. I think we have to trust our doctors with our lab results and not get too hung up on numbers, which, they are far more educated to understand. However, in all those 9 years my health has gradually deteriorated and no one in the medical profession (including my hematologist/immunologist) picked up on. I finally have a tentative diagnosis of 'specific antibody deficiency' which, I believe, although no one has told me for sure, stems from my follicular lymphoma . To me it stands to reason that the lymphoma must have damaged or weakened the immune system somehow. I was told at every check up that the cancer had not returned, but it took years of unwellness, and alot of digging on my part to finally convince someone to look deeper at my immune panel. A lesson to all of us to listen to our body, and not give up.

[laylalulu in reply to jack23]

This is what I was thinking if I had the reports I'd drive myself crazy trying to analyze every little change in numbers. Sometimes I don't feel well and question my health. I guess it's a bit of an ongoing worry as long as we listen to our body like you say, and don't let things go too long without getting checked out were good! 🙂