There was a comment on a post from earlier this month from an anonymous reader that made a good point -- lots of what we read is based on what has happened to a group of people, but there is a lot of variation within that group. So much of what happens to patients with cancer is very personal, in the sense that each of our situations is very different from other patients'. I think that's especially true of patients with Follicular Lymphoma, since our disease is so variable. People with the same diagnosis (grade 2, stage 4, whatever) can have incredibly different experiences. It's good to remember that.
The anonymous reader who left the comment followed up with an email, and we had a very nice exchange over a couple of days. (I'm always happy to get emails and comments from readers.) His name is Joel and he's fairly recently diagnosed. He shared his story, and some of the details were very familiar. Joel was diagnosed at 40 (same as me). Grade 1, Stage 3 (me too!). Very active and healthy (I was running 5k and 10k races at the time). Diagnosis was kind of accidental (I was getting over pneumonia and a large node showed up on a chest scan, and then another node popped up near my hip). Very similar stories!
I hope the similarities continue. I feel like I've had a very lucky path as a patient with FL. The disease has remained fairly slow-growing for me and hasn't caused me too many problems. I know that's not true for everyone.
One of the other things we talked about was making treatment decisions, especially for that first treatment. As you might know, if you've been reading for a while, my FL was slow-growing enough at first that I was able to watch and wait for two full years before I needed treatment. And then I had six rounds of Rituxan. I haven't needed treatment since then -- almost 15 years.
Like I said, I know how lucky I am.
At about the same time we were having this exchange, I got an alert about a new article from WebMD called "Follicular Lymphoma: Why “Watch and Wait” May Be the Best Approach." A better title might have added "for some patients." It's obviously not true for all patients with FL, which the full article makes clear. And that's the point of all of this -- we all have different situations, even of they seem similar on the surface.
I made a video a few years ago that introduced a WebMD slide show on what patients should do their own careful research. It is, sadly, no longer online. WebMD can kind of a mixed bag. They can be incomplete and alarmist sometimes, and really useful at other times. I think this article on watching and waiting is actually pretty good. It explains the idea well, and gives what I think is solid advice on whether or not it is appropriate, and when it is time to switch from waiting to treating. I remember seeing an article on watching and waiting right after I was diagnosed, when I was first doing internet research and trying to figure out what FL was. I remember seeing the article and thinking "Who the heck would get a cancer diagnosis and not have treatment?" A month later, that was me. It says something about how poorly that article was written. I think the WebMD article would give good advice to someone who was trying to make that decision.
It's rare that someone who has just been diagnosed has a clear enough head to be able to do that kind of research and make an informed decision. (Joel is a full-on Cancer Nerd, based on our exchange. I can confirm.) Much easier to see clearly when the initial shock of a diagnosis has work off. That's one advantage of being diagnosed with a slow-growing cancer like FL -- for many of us, we have some time to learn and then make decisions.
And after we've had active treatment, we hopefully have time to continue learning and being prepared for any future decisions (if that's how we choose to deal with it -- pushing it out of our heads completely is also an acceptable choice).
All of this has been going through my head for the last few days, since Joel first wrote. Getting a new diagnosis is so hard. I am grateful that I found an online support group for NHL with some people who were willing to share their stories and give some information. I grew pretty close to some of them, and I still keep up with their lives. It's so important to share what we know. And it doesn't have to be all Cancer Nerd-y stuff, either. Just our living through what we have lived through is worthy of sharing, and incredibly valuable to other patients. If nothing else, it gives them hope. They know there's a tomorrow. Sometimes that doesn't seem like a sure thing, especially when you've just been diagnosed.
So I hope Joel, and any other folks who were recently diagnosed, are doing well and finding the knowledge and support and comfort that you need.
Take care, everyone.
4 comments:
I’ve been waiting and watching for three years and it starting to really get into my head.
Hi Anonymous. I know, watching and waiting is hard. I did it for two years --exactly two years; I started treatment on my second diagnosiversary. It's hard. I always say that FL, especially when it is slow-growing like yours seems to be, has more emotional side effects than physical side effects. I wish I had some magic formula for making it easy, but I can at least offer some things that I did that helped when it started to wear on me, too. First, I asked my oncologist to keep seeing me every 6 months, if not sooner. At some point, he wanted to go to 12 month appointments. Knowing I was seeing him within 6 months always made me feel better. Second, I kept up with support groups. Even if I didn't ask questions, I went back and used the search function to find older discussions and posts about watching and waiting. Someone inevitably asked how long people had been watching, and I could see the people who were saying 3 years, 5 years, 10 years. It helped to remind me that I probably wasn't missing any symptoms -- people really did watch for years and years, longer than I had been. Third, I went full Cancer Nerd and kept up with research. I always had a plan, and I talked about it at every appointment. I could mentally prepare myself for what might happen next. I still do this, 16 years after diagnosis. I wish I could say it goes away, but it never has gone away fully for me. I try to use that little bit of fear to stay alert. Over time, I've learned how much fear to let in -- just enough to stay vigilant, but not so much that it paralyzes me. And remember that it's OK to talk about these things, especially if it's with someone who has been there and knows how it feels. Sometimes just acknowledging it was enough to calm me. And one final thing: Remember that it's your choice. If the waiting gets to be too much, you can tell your onc that you think it's time for treatment. Emotional side effects matter as much as physical ones. Treatment can help with both. If your onc disagrees, get a second opinion. But maybe the talk with the onc will ease your fears, too. I hope this helps a little. Stay in touch.
Thank you Bob that helps a lot, i think it’s not really realizing that it can go 4,5 or longer.i don’t follow any support groups , i found you early on and it has helped me a lot. Any others you can recommend? My name is Chip, I’m 69 , recently retired and an active guy. Thanks again for all you do.
Nice to meet you, Chip. The first online support group I ever got involved with is called Non-Hodgkin's Peer Support (https://forums.lymphoma.com/forums/non-hodgkins-peer-support-and-news.7/). They're less active than they have been in the past, but still a good source of knowledge and support. If you're on Facebook, the Living with Follicular Lymphoma group is often very helpful, though with the kind of in-fighting that happens occasionally when you have a group of 12,000 members. But lots of folks who have watched and waited who can provide some great advice. You can also ask questions at other sites with forums or discussions, including Blood-Cancer.com (some nice articles on watching and waiting there) and organizations like the Follicular Lymphoma Foundation, the Leukemia and Lymphoma Society, and the Lymphoma Research Foundation (look for Patient Support links on all of those sites). I'm glad I've been able to help you out. I hope these suggestions help even more. Take care.
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