Pathology report said B Cell Lymphoma, nothing more...

Welcome Teulon12.  Sorry you have to be here but you will find wonderful and supporive friends here.

Your oncologist will be able to tell you more.  I agree with Mike about how long this is taking and getting a second opinion is always a good option as well.  Lymphoma is very treatable and even curable so there is plenty of hope .  Regarding what to expect - part of it depends on the specific diagnosis and new treatments are coming out all the time but in general, you might expect the following:

1. More tests which include blood workups, staging, a possible bone marrow biopsy (to determine if the cancer is in the bones), CT and/or PET scans.

2. A treatment plan which likely will include chemotherapy again depending on the type/stage of the cancer.  A form of "CHOP" therapy (RCHOP, R-EPOCH, etc) is often used for B Cell lymphoma (I had Diffuse Large B Cell Lymphoma - in remission for going on two years now).  Chemotherapy is well managed and tolerated these days as they have learned so much over the past few years.  It is no picnic but it is very doable.

Please understand it is very human and normal to be anxious, frustrated and scared at this time.  I strongly advise you talk to your doctor about anti-anxiety medication - it really helps keep the "worry monster" at bay .  Please feel free to ask questions as you learn more or just to vent, share, etc.  We are here for each other.  Attitude and humor are free weapons in this war and they will be a big help to you.  Many others will respond soon.  You are not alone.

Big hugs and hang in there!

Jim

Teulon12 said:

More background

Firstly, your replies were helpful and surprisingly made me tear up a bit. Perhaps the simple fact I'm not alone and others have been there is what moved me. One question was where do I live... I'm from Manitoba, Canada which means public health caresystem health care system is certainly strained which is the primary reason for longer waits but we do have excellent practitioners in all fields. 

Shortly following the referral for the biopsy, my surgeon ran a number of tests. Chest X-ray came up clear, bloodwork was apparently good, I did ask specifically about my white blood cell count knowing that this is associated withcancer - that too was normal. Had a mammogram which displayed left abnormal left axiliary node (which we already knew as that was my lump) and finally a CT scan which showed the irregular axiliary and "numerous enlarged cervical nodes". The only enlargement I could feel was the axiliary ... The surgeon stated he felt two small nodes in my groin that he thought were pea size. I still can't feel these myself. With regards to anydither symptoms that I read about on line, very few. I'm just about 40 yrs old, seldom sick with a cold or otherwise. Healthy overall, I have been slowly gaining wait over past few years but attribute that to being less active and slower metabolism. I did read about B symptoms which I think I may have a couple. Approximately 7 yrs ago I began havingI really dry anditchy skin (legs and arms mainly) my doctor sent me to a dermatologist as excema is in my family. The specialist tested my for everything but cancer including lupus. Bloodwork showed autoimmune deficiencies but nothing more. He then diagnosed this ongoing itch as folicalitis and excema, prescribing me a number of steroid creams. The itch has never gone away   The other possible symptoms are that during thee past 7 yrs or so I notice I sweat much more than before but I chalked that up to getting older   I periodically have night sweats but not often and it's momentarily when I do

I guess what's troubling me is that I'm somewhat in disbelief as I don't feel sick

 

Thanks again for your replies and support. I know I will be on this site often

Cheers  Bonnie

Bonnie,

If you have cervical,axilliary and groin nodes involved do not be surprised that you get told that you are at a stage 3, as you have nodes involved in three different quadrants of your body. I am only 36, just got diagnosed in march and have underwent 4 rounds of chemo since then and am still in disbelief because I still don't feel sick. I have never felt sick, only some fatigue. I too had all of the same node involvement as you are speaking of. I was told that I have had my cancer for years before finding it, in hindsight I would say probably 10 years that I have had it based on the symptoms. I have Non-Hodgkins Stage 3 follicular lymphoma, which is also involving B-Cell. It is a very indolent or slow growing cancer, which is why it presents itself and then goes away for years playing little tricks on us and our mind. Rest assured I was told my cancer usually presents itself in people over 60 years of age, so I caught it sooner rather than later. Also understand that staging in Lymphoma is different than other types of cancers since it is your lymphatic and blood system, which comes from your bone marrow. It is not uncommon to be stage 3 or stage 4 with lymphoma, but it also doesn't mean that you are terminal. Lymphoma is a chronic disease like diabetes, you have to watch it, treat it and continue to monitor it and take care of yourself. I do understand that the medical system is much different in Canada vs. United States.

Ask for anti anxiety meds as Jim advised....I have Ativan, it works great

Continue to take good care of yourself emotionally and physically

XXXOOO

Carie

Teulon12 said:

Thanks

Hi carie. Thanks so much for the response. Certainly made mferrel more at ease. I'm still waiting for appointment with oncologist. Hopefully the referral has been made. So still know nothing more than the basic diagnosis of B Cell Lymphoma.  How many chemotherepy treatments will you be undergoing?

I am currently scheduled for 6 treatments and have finished 4 thus far...only 2 more to go!!!

I just want to let you know that depending upon the treatment, it isn't as bad as you could imagine. In fact, the members on here prepared me for whatever was about to come my way. Without their knowledge i would have been lost and probably had a million anxiety attacks..lol...I have sailed through my treatments with little to no side effects. I can continue my normal daily routines with nobody even knowing that I have had chemo treatments. I just need naps, but to be quite frank I have always been a sleepy person.

XXXOOO

Carie

unknown said:

Hi Bonnie - also one thing I

Hi Bonnie - also one thing I would like to add is that some people are able to avoid chemo for years. This of course depends on your specific diagnosis and stage. I was diagnosed with stage IV follicular lymphoma ( often called FNHL on this forum) with bone marrow involvement.  It was in my marrow and I had several enlarged lymph nodes but they were not very large. The biggest one was 1.7 centimeters. Due to my low tumor burden I am on a Rituxan regime. The side effects are much less than chemo still they do exist. I am having a much harder time than most people have on Rituxan. It does not mean I will never need chemo, only that it may be delayed for years.

please be aware that lymphoma can only be typed and diagnosed correctly is with a biopsy And probably a bone marrow aspiration.

no one is perfect not even an excellent physician. Get a second opinion! Its critical that at least two independent labs and two oncologists look at your case.  It could save your life!

best of luck - Garry

Hi Garry, we have spoken a few times in the past. Carie is most likely "napping," so I will not bother her here in this post (she wakes up swinging at times !). 

Some of what you wrote about yourself reminds me of my best friend, and what he is going through at the moment.  He is a little older (72 presently), and is in Stage IV disease, but prostate cancer, not lymphoma.  Like many prostate cancers, his has moved very slowly -- his prostate was fully removed (surgically) 13 years ago, so his battle has been a long one. His name also is Gary (one r).   After no chemo for about two years, he is now beginning a pallatative chemo for end-stage prostate patients, named Jevtana.  He has been dreading infusions, but so far so good; no detectible side-effects yet, after 2.5 weeks.

He was  told he had "six months to live" two years ago, and then when on another pallatative chemo in pill form, Zytiga. It is truly remarkable.   His PSA went from 266 to 45.  His last PSA was over 600, and the doc told him he had "one month" unless he started this IV chemo immediately, which he said might give him a year or more.  We shall see. If his side-effect become too serious, I know he will quit, it is just the way he is.  I respect his decisions, whatever they are, and have done no arm-bending at all.  These "top of the ninth inning" decisions are tough.

Most of the fatal cancer patient friends I have delt with were non-lymphoma.  It is interesting to follow what is going on in the non-lymphoma cancers on occasion.  Prostate cancer is not delt with with chemo until end-stage.  Hormonal drugs, radiation, and a lot of other things are exhausted first, which can go on for years or even decades, a little like using rituxan, I suppose (I took rituxan for six months , but with my ABVD, so I am a little familiar with it).  Also, chemo is never for curative effect with prostate, unlike lymphoma.   Nonetheless, new drugs are coming on-line for prostate treatment with amazing rapidity.   I take Gary for infusion a week from Tuesday, and hope it goes well for him.

May you receive only rituxan for a long time to come !

max

COBRA666 said:

Max

Max,

  This is not about Lymphoma either. I often wonder about prostate cancer and how it goes undetected in so many people.  Is it due to people not getting exams or never having their psa checked or just undetectable in some cases. My father died from it in 1995. I know in his case it was due to never going to the Dr. There are so many ways to have it checked today. I go for my yearly exams and every time I have my blood checked at my GP they check my psa. Sometimes I wonder since I hear of prostate cancer so much if this is really enough. I hear stuff on TV about Drs. disagreeing if psa or even the physical  exams are even necessary, because they can not gaurantee you still will not end up with it and it will eventually take you out. I know TV is just a big commercial, but it still puts the idea in your head. Of course I even hear colonoscopy falls in the same catagory. Just thought you or somebody could shed some light on this subject. I know Jim does a lot of reading as well. Even so, I still get my yearly exam and scheduled colonoscopies.  John

I would differ a little with what you said about both the PSA test and colonoscopys. I think that both are huge life-savers. As you said regarding your own father, he never got anything checked out.

My personal feeling, after seeing numerous friends get late term prostate cancer, is that it is not followed closely enough, or aggressivley enough, rather than the opposite. 

Colonoscopy is also a life saver for sure. I had to have one several months ago due to my scare with anemia, but everything was normal -- a tiny polyp, that was not cancerous or precancerous. When I was getting my infusions in 2009, a woman I became dear friends with, Deborah, was dealing with end-stage colo-rectal cancer. It took her life about 8 months later.  She insisted that her gastrologist years earlier dallied around, avoiding tests for her cancer (it began in her stomach four years earlier).  It seems very likely that a scoping early-on would have saved her life.

max