Hi Dave. Welcome to the group although I wish it didn't mean you have cancer. I was diagnosed with B cell follicular small cell NH Lymphoma, stage 4 September 21, 2003 at 9:35 am. :-) I'll never forget that date and time either. I grow lumps in my face. Luckily they are about the size of a pencil eraser.

My first thought was "Get it out". I wanted it gone. So we did 8 rounds of Rituxan alone. I didn't lose my hair and I was able to keep working but it did take the spring out of my step. 18 months later, I had a new lump so we did 8 rounds of Rituxan alone again. I tolerate it well and it made the lumps go away. It has been over 6 years since my last treatment.

Although I didn't do watchful wait, looking back, I wish I had waited. It seems once you start treating, you keep treating. And none of the drugs are without side effects. I ended up getting a nerve disease. Not very fun.

For me, time allowed me to not think of it all the time. It has gotten to the point I have to almost remind myself I have cancer. "Oh yeah, I have cancer." Also learning that not all good treatment plans mean actively treating. If you are asymptomatic, I think "watch and wait" is very valid. It is a slow growing cancer. And if yours is like mine, you will always have cancer. It's just if it is active or not. You have lots of time to wait. After check up after check up, without it progressing, you will learn to trust your body. I also told myself I couldn't "lump check" until a week before my next oncology appointment. Otherwise I would lay awake all night checking for lumps. You will find a security with your medical team and your body. Then you can go on and live your life...cancer or not. Lots of people have cancer, lots of people have cancer and don't know it, lots of people don't have cancer but they may one day. We are the lucky ones. We know it, have a good medical team to help us treat it when the time is right, and we are aware of our bodies and the fragility of life. I can say you will probably find more meaning in your life and those around you and live a much fuller life post cancer diagnosis.

Hang in there Dave. It is all going to be okay.

Thanks. I really appreciate your response. Since I was told about the watchful waiting by 2 oncologists, and then again at Johns Hopkins, I have done considerable research on my situation, and it absolutely resonates that early treatment for the low grade "incurable" type does nothing to impact overall survival. In fact, one of my docs said basically, we could start you on a course of treatment, and I guarantee that in 4 months your PET scan would show NO evidence of the cancer at all. BUT, in 3 years you will have it all back. My main oncologist said, "why make someone who is not sick, sick?"

I am starting to pull my head back out of my rear end again and have seen some glimpses of sunlight. For about 6 weeks this cancer totally dominated my every waking moment. It has definitely been an emotional ride. It probably has made me a little nicer (but, I am not sure that I don't want to see the less nice Dave back ... kidding).

Fortunately, my children and grandchildren are all in the area. Over the past 25 years I have done a great deal helping others out with their bodies (nutrition and fitness), and I am genuinely moved by the support that has come back for me. 10 years ago my oldest daughter had a cardiac arrest and suffered an anoxic brain injury. (She lives with us, but has no short term memory. So I need to be around for her). After going through that with her, I applied my exercise physiology skills to working with brain injured clients. I guess the next page in my life is doing what I can to help others going through this devestating experience called cancer.

PS About a month ago I read an article on the internet on a "cheap way to reduce the tumors" with habenero peppers and garlic. I have a decent size lump on the back of my neck, and did their recipe for 6 days. On the 7th, I had my oncologist feel the lump. He said it was smaller. Then I told him what I was doing, and his response was "that's not it, they just get bigger and smaller on their own". Needless to say, since the "cure" is basically harmless (think spicy garlic toast, which I am actually craving now), I have been doing this for the past 4 weeks. The lump is hardly there. I figure if they are not going to do any active treatment (i.e. watchful waiting), then I will do what can. If you haven't seen this before, here is a link to the article. Kind of like, why not. http://kelleyeidem.hubpages.com/hub/How-I-Cured-Stage-4-Cancer-in-Two-Weeks-For-Less-Than-The-Cost-Of-A-Night-At-The-Movies.

Again, thanks for being there!!

I had a similar experience - healthy, asymptomatic, had a lump removed I thought was fatty tissue or something along that line - went through the same testing you did, got a second and third opinion from 2 specialists = stage 2 grade 2 Follicular B-Cell NHL. This was 7 yrs ago this past Oct 5th, however, I was misdiagnosed 6yrs prior. 13 yrs and it has proven to be slow growing as they said it was. I am still doing watch and wait and so thankful for it! I think it just gets easier with the passage of time. I do think about it every day, just not all day long. I don't focus on it, but I did change my diet. I am mostly organic now. My way of feeling any control, and helps keep me from being depressed. I think you are wise to be aware depression is a very natural route for you to travel ... but you can nip that where it is too. Do you see a psychologist? someone you can talk to as you deal with the different feelings that come up as a result of your diagnosis? I think that would be great...or joining a local cancer support group. That could be tricker though, may cause depression to worsen. This site should help too - knowing you are not alone. I tell ppl all the time there are millions of ppl walking around that have no clue they have something like this even though they do. By us knowing, we can help faster/better b/c our docs will have our records and history at hand. I actually feel healthier today than ever before. My plan is to get through my entire, long life doing watch and wait. We will not necessarily die from this...we will die some day, that is gauranteed but we don't need this diagnosis to take over our life. Be kind to yourself, take care of yourself, and live your life.

Cal7,
Thanks for your input. This is what I hoped would come from this group. Unfortunately, the first hand "stuff" does not come from the doctors visits (or maybe, we're less willing to hear it from them). But, getting the opportunity to actually meet and talk with others who have "walked in our shoes" is very helpful. It is now 2 months since I got my diagnosis, and I really am "starting to see daylight" again, although I have 4 masses in my adbomen and was told that that might be the area that triggers treatment. Everytime I get a little bit gas, I worry that "this might be it". Channelling the intense thought processes into other thoughts and "living your life", while sounding like a Hallmark Card, is really what needs to happen. However, this is easier said than done when you are in the initial, acute phase of the process (I am sure it all comes back when (if) active treatment starts). BUT, I can and am much more receptive to those comments when it is coming from a "member of the club". I look forward to being able to say that I am looking back at and uneventful 7 years of watch and wait, and I agree that I am absolutely going to be proactive in my care. You are right, even if it doesn't actually help, at least I feel like I am doing something about it. I keep thinking that as long as I can still bench press over 315 lbs., "How sick can I be?". Since not many well people, of any age, can do that, certainly not at almost 60, that is my personal measuring device for my heatlh. It lights a fire under my workouts, because I don't want my strength to fall off, since then I might be getting sick. Also, trying to move away from the pesticide fed meats and more organic produce. Again, THANKS for being there.

Hi , Dave . I've just sign-in for this support group site and you'll be my first interaction in it . In July/2010 I had a car accident and was taken to the Emergency room of the hospital that I work for . They made all types of test to see if I had broken bones or any blood leaks . They found just a minor fracture on the spleen but the doctor said I should see my doctor right away . To make this short...after several tests , scams and a biopsy of a groin node...the diagnose of a B-folicular NH Lymphoma was made .
My doctor advised me to be in the wait and watch group ...since being diagnosed , a year and half ago, I've never had any
treatment although I go for blood tests and scams regularly .
I understand your concern and feelings in regard to the wait and watch approach . After going for a second opinion , I decided to trust my doctors experience and relax ( that's right...relax ! ). I really don't spend much time thinking about my lymphoma . I believe the less stress I bring to my life , the better to my immune system where the cells are not doing well . Another thing that helps me not to focus so much on the future is that I work with people in need of help ( addicts/alcoholics) which takes the focus away from myself by helping others . I hope you're a spiritual person because that sometimes helps a lot .
Dave, go do things you like to do, enjoy your loved ones company, have fun in life ...you're alive and feeling well . Who said a cancer diagnose is a life sentence ?

Ione

Thanks, and welcome to the group. Now at 3 months since my diagnosis, I am moving forward, and finally pulling my head out of my rear end (it's really hard to see daylight up there). On top of everything else, my 94 yr. old mother-in-law, who lived with us, got critically sick 3 weeks after my diagnosis, which meant daily visits to the hospital. She just passed away last week, and after the funeral, the family issues are a bit less.

Anyway, I am absolutely on board with the Watch and Wait for my situation. But, let me point you towards a follicular NHL support group with a huge amount of information and 2,500 members. http://www.lymphomasurvival.com/ Between, both of these groups, coupled with the time since diagnosis, I really am seeing daylight again. Just the type of person that I am, I need to understand things. Once I have that under my belt, then I can move on with the "life stuff", and I am.
Like you, I am involved with "helping others" on a regular basis, and it does help. I have been truly moved by how much others, including in these groups, have been there to help me, too.

Thanks, and welcome to the group. Now at 3 months since my diagnosis, I am moving forward, and finally pulling my head out of my rear end (it's really hard to see daylight up there). On top of everything else, my 94 yr. old mother-in-law, who lived with us, got critically sick 3 weeks after my diagnosis, which meant daily visits to the hospital. She just passed away last week, and after the funeral, the family issues are a bit less.

Anyway, I am absolutely on board with the Watch and Wait for my situation. But, let me point you towards a follicular NHL support group with a huge amount of information and 2,500 members. http://www.lymphomasurvival.com/ Between, both of these groups, coupled with the time since diagnosis, I really am seeing daylight again. Just the type of person that I am, I need to understand things. Once I have that under my belt, then I can move on with the "life stuff", and I am.
Like you, I am involved with "helping others" on a regular basis, and it does help. I have been truly moved by how much others, including in these groups, have been there to help me, too.

Thanks, and welcome to the group. Now at 3 months since my diagnosis, I am moving forward, and finally pulling my head out of my rear end (it's really hard to see daylight up there). On top of everything else, my 94 yr. old mother-in-law, who lived with us, got critically sick 3 weeks after my diagnosis, which meant daily visits to the hospital. She just passed away last week, and after the funeral, the family issues are a bit less.

Anyway, I am absolutely on board with the Watch and Wait for my situation. But, let me point you towards a follicular NHL support group with a huge amount of information and 2,500 members. http://www.lymphomasurvival.com/ Between, both of these groups, coupled with the time since diagnosis, I really am seeing daylight again. Just the type of person that I am, I need to understand things. Once I have that under my belt, then I can move on with the "life stuff", and I am.
Like you, I am involved with "helping others" on a regular basis, and it does help. I have been truly moved by how much others, including in these groups, have been there to help me, too.

I am sorry to hear about your Mother in Law Dave. Never an easy thing even when it is their time and they have lived a long life.

I attended a LLS conference about treatment options and they did discuss "watch and wait" for B-Cell follicular lymphoma where no (or limited) symptoms are present. They didn't any difference in disease progression between those that treated and those that did not. Because B-Cell follicular lymphoma is a chronic cancer meaning you aren't ever really rid of it, it makes sense to hold off treatment as long as possible. It also leaves you open for other treatment options in the future.

Hope you are doing okay.

Thanks, Lexisgirl. The last few days, since the funeral, I have noticed that there has been a level of calmness that has come over my home. Not sure what I am going to do with the time that we spent making daily runs to the hospital doing the vigil over my mother-in-law. I am sure that we'll figure it out.

Last week went to the oncologist for a follow-up. During the appt. he calmly dropped the fact that they found mantle cells in my bone marrow biopsy. Amazing. I remember, based on my reading, that everything was cool unless you had mantle cells. So, in a "oh by the way" statement, he drops this on me and then says I'll see you in 4 months. So I bolt out of there and start researching again. I spoke to his on-call nurse yesterday, to find out more about this. Her comment, based on his notes, was that they did find them, but at this time they were not sure whether this would become the primary diagnosis. Wow. These guys really need to understand that they are dealing with real people, with real feelings, and that are not idiots. I am not thrilled by this. New doc?? Perhaps.

That is interesting news that they seemed to drop casually without considering how you might feel about it. I can say I think it is really important to have a doctor that you are comfortable with. For me, that means taking the time I need to go over everything and answer any questions I have. I also have an agreement with my oncologist that he will "give it to me straight". I don't need to be coddled. Thoughtful information is good but not avoided.

If my doctor told me he found mantle cells, my next question would be "What does that mean?" "How does that change my treatment plan and prognosis?". Those are very valid questions they should offer without asking. For me, I found researching on the internet was helpful but within a few clicks, I could scare the shit out of myself. I really try to not get too concerned and uptight about my research findings.

If you feel your doctor lacks information or compassion, it might be worth finding someone else to manage your care.

Agreed. It was just after that, that we had the discussion about me being the Captain of the ship, and he was an important member of the team. (Team members can be replaced - I didn't say that to him, but thought it). Earlier, I met with his partner, a very well published oncologist from India. I really liked him, and felt that he took the proper amount of time with me. The only problem is that with my aging ears (too much time playing in loud bands) coupled with his heavy accent, I found myself straining to follow what he was saying. He was nice enough to take a piece of paper and write out that I had "elevated lambda restricted plasma cells" (MGUS). I never would have gotten that one. I wouldn't hesitate to see that doc again.