Newly Diagnosed - really need help

I was diagnosed on July 15 with DLBCL, my ENT and radiotherapy oncolgist didn't give me too many specifics and I can't seem to find out any reliable information about charactersitics of the various stages or how fast to start treatment.

A few things, I'm 48, male. Good shape and still exercise 5 times a week. No fever outside the norm (less than 100), my ldh level came back normal as did the rest of the blood work. The ongologist checked me over, and didn't find any unusual lymph nodes.

This leads to my questions, I can't find any information about how a patient generally feels or experiences at the different stages. For instance, if I'm a stage three, would I expect to see enlarged nodes, feel pressure on impacted organs, have fever, etc?

I know every patient is different, but is there any information like this?

Second question - How long should it take from doing the tests to starting treatment? I understand the disease is aggressive, but the doctors don't seem to be in any rush. I was scheduled for my pt scan a week after I met with the radiotherapy oncologist and don't meet with the medical oncologist until the same day. This was a mess up of the scheduling assistant.

Less than two weeks ago I didn’t even know what DLBCL was and now I have all kinds of questions. Some are out there, but many are not.

Thanks

Good morning, Cowboy, sorry to meet under these circumstances...best of luck with your journey.

This site: http://www.nhlcyberfamily.org/types/diffuse.htm is my personal favorite for information and resources for research about NHL in general and specific diseases in particular. I have follicular lymphoma for the past two years and this resource is one I have used on multiple occassions. I hope you find it useful.

Best of luck with developing your treatment plan. Remember that you are in charge, ask questions and expect answers.

Good health, Kermica

Cowboy-
Yeah there's a lot to learn, and I think the first thing most newly dx'd people with lymphoma learn is that the term 'lymphoma' is loaded. Non-Hodgkin's Lymphoma itself is totally loaded, and even DLBCL is loaded- the term comprises more than a few distinct types of cancer.

So this is one likely reason for the delay and for the vague responses from your docs-- making an accurate diagnosis in lymphoma is extremely hard. It requires more than a pathologist looking through a microscope. And making the wrong diagnosis can be very bad, and it happens way too often.

There are six recommended procedures involved in diagnosis: node biopsy, clinical history, physical exam, lab tests, scans, and bone marrow biopsy. Docs can do a bunch more on top of that if they need to. this is what amounts to clinical staging, which is what they're doing now. Unfortunately, you could seem largely symptom-free and be in stage IV, even with a moderately aggressive disease like DLBCL. It's generally not the case, but it happens.

Judging by what you've said so far, according to the international prognostic index, you're looking pretty good: Under 60, normal LDH, solid performance status-- you seem to fall into the second lowest risk group, and this does help predict outcomes. You could go even further down in the risk group if you're either stage I or II or you don't have any extranodal disease sites. Bottom line, the lower the risk group, the higher the potential for cure.

I know it sounds ridiculous, but try not to panic too much. A week or two isn't going to make a whole lot of difference, at all. DLBCL isn't THAT aggressive. That said, you may have to make some big treatment decisions very soon; in that case, check out this tip from the Mayo Clinic, it nicely helps you sort some things out.

Ross

Cowboy-
I can point you to so many examples of misdiagnoses in lymphoma because it's an incredibly difficult dx to make, and generally the only pathologist qualified to do so is a blood or hematopathologist, and I don't know where you live but these pathologists aren't everywhere, they're mostly found at NCI-designated comprehensive cancer centers.

Now, if yours is a B-cell lymphoma, those are easier to dx accurately than T-cell lymphomas, but the consequences of a misdiagnosis is just as drastic. I wrote about misdiagnoses a while back, you can see an example in that blog entry, note the difference between prognoses in the two samples. Also check out our tip at second opinions on pathology results.

It's not limited to lymphomas. Just the other day the New York Times featured a story about a woman's breast cancer diagnosis, for which she received hardcore treatment that included excision of part of her breast ... only to learn that the pathologist was wrong- she'd never even had cancer.

As for lymphoma, we all discuss the 50 or so subtypes of lymphoma as being similar diseases, but in reality they're entirely different cancers from one another. So you get the DLBCL diagnosis, begin R-CHOP chemotherapy, a few months later you learn that it's actually Burkitt's lymphoma and you should have been getting, I don't know, like dose-escalated EPOCH, a different regimen. That's wasted time and wasted, unnecessary toxicity.

All this said, if you're being seen at a place like MD Anderson in Houston, you probably don't need to seek another opinion, because more than one of their qualified pathologists likely reviewed the slide. If you're going to Smalltown Community Hospital, then yes-- these people just don't see enough of these cancers to be any good at determining what's up.

I noted in another post to you that you seem to be in the low-risk group anyway. Doesn't mean you're safe, and cancer stats can be bunk, but the IPI (Int'l Prognostic Index) for NHL has been vetted extensively and stands up well. In fact, the cure percentages it offers are on the conservative end because the Index doesn't take into consideration the blockbuster NHL drug of the past decade, Rituxan.

In short, man there's not a whole lot you can do but the impossible- be patient. Easy for me to say, I know; I'd tell me to go f*ck myself. But let's say they gave you the chance to start chemo this afternoon. Chemo is serious, serious stuff, and it may not be the best course of action. Do you really think you're in the best frame of mind right now to make such a decision? No way, especially because your head is spinning; you're probably bouncing from site to site almost with the compulsiveness of a gambling addict; that last site was good, but the web is huge, there's gotta be another site out there with the answers I need, so you find another, but no satisfaction, then another, each one sparking your hopes before dashing them. Who among us hasn't thought that no matter the question, the web has the answer?

Finally-- and let me say, I'm not a cancer survivor, for all I know I don't have cancer and never have--- I do understand that when you live outside the cancer community you have no f**king idea just how gargantuan it is until you're forced in- either by your own dx or for me that of a loved one- and it's like holy ****, if cancer was a city it would be like Chicago O'Hare before Thanksgiving, swarms of people going every which way with their own determined agendas. Cancer lends itself so easily to metaphors because at its most basic, it's unrestrained cell growth, or as one author puts it, cancer cells are "a disorganized autonomous mob of maladjusted adolescents ... a street gang intent on mayhem." But the environment around cancer- the websites, the treatments, the research, the fear, the media representation, has that same chaotic feel. It's not something you can learn about in a night and be caught up. You won't be caught up in a year, or ten. There's no such thing.

Ross

Thanks Ross -

I really appreciate the time and thought you've given to my question.

I promise to not be a bother, but my current medical and radiotherapy oncologists are through the University of Cincinnati. My second opinion is through the James Center at Ohio State University. It is suppose to be one of the top cancer hospitals in the country. My oncologist at the James is on vacation this week, and week from Friday is the earliest I can get in to see her. This might delay my treatment by a week or so. Thoughts?

Thanks again for providing guidance.

PS - you are so right about the addiction to web-based information.

Cowboy, Ross is spot on…as difficult as it is (and it is very difficult in the early days of the journey) patience is a very important virtue while going through the dx and staging process. A second opinion is highly advisable.

In my case, I was diagnosed Stage 4 FNHL in July 2008, which was pretty devastating despite all the nice talk about it not being uncommon. I chose to defer any treatment until I had a second opinion, which I had at Sloan Kettering in NYC. Surprise, I was Stage 1, not Stage 4.

This changed my treatment choices from immediate chemo and talk of SCT to localized radiation. Unfortunately (for me) one lesion was missed when mapping for the rads so I had 40 treatments instead of the standard 20 AND it didn’t kill the cancer (I am now Stage 3 and doing watch and wait until things deteriorate further).

So, as hard as it is, don’t make any hasty decisions regarding your treatment and your life. I think the most important element to my piece of mind regarding my cancer is knowledge and control. I have challenged my primary onc and threatened to fire him because he was not being forthcoming enough regarding my choices, my prognosis and his reasoning about them. That is now fixed. So, knowledge, patience and measured thought in a very, very emotional situation is what has worked for me…I hope some aspect can be helpful for you.

Good health,

kermica

Cowboy you're not a bother, at least not here, to me, to people at this site. Maybe to other people or in other places you are, I don't know-- but not here.

if your pathology results are going to OSU's James Center then your second opinion is in good hands. the james center is an elite cancer center worldwide, a member institution of the national cancer institute's NCCN (nccn.org) and their pathologists are qualified to handle your biopsy for certain.

Now, you cant get in to see your Onc there for what amounts to about 12 days right? And you were diagnosed on 15 July so that means August 6 is your appointment, but the soonest-- assuming they had your dx, they'd formulated a treatment plan, and were ready to go, the soonest you might start, say, chemo or radiation or whatever, would be August 9, the monday. That's a little under four weeks. it's impossible to say, but while there can be little doubt that your cancer will be growing over that time, the odds are very very good that the growth in that time will not affect your prognosis. if you've got cancer now, then you'll probably still have it in four weeks, just a little more of it. there's nothing you can do about it, no at-home cancer-slowing kit you can buy. but for your type of lymphoma, that kind of time is not a huge, huge deal. DLBCL isn't that aggressive in general.

there are things you CAN do, however. you could get your things in order-- i don't mean write a last will and testament, I mean start thinking about some of the potential treatment side effects and prepare for them. for instance go grocery shopping for recommended foods etc. this isn't an area that i'm well-versed in, so I'm going to post a group topic to see what ideas other people have, but my point is you can use the time to deal with administrative issues (insurance, work), with psychological ones, practical ones, etc. It might be a good time to take some real control over certain aspects of your life because when people have cancer and are undergoing treatment, they feel very out of control, and we all hate that feeling. the more control you can have, over anything at all, the better.

so i'll post a question about what people can do if they have a few weeks to prepare for the start of treatment, we'll see what others with more experience have to say.

Ross

Cowboy,
Thanks for your post, our Diagnosis are very much the same. I was diagnosed with Stage III DLBCL 9/29/2009, Age 45, good LDH levels, and while not an exercise nut, I ran a couple times a week. For me I did have tightness in the chest and breathing issues as the tumor in my thymus gland behind the breastbone, and lung lymph node brought me in to the hospital (for this I am grateful). The steps that followed were:

1. Tumor biopsy
(2nd opinion from Mayo clinic to confirm it was indeed DLBCL)

2. Bone marrow biopsy
3. R-CHOP chemo (8 rounds...2 weeks apart)
4. Remission following chemo! No Radiation

Follow up scans are now every 3 months for the first 2 years, every 6 months for years 3 to 5. If I get to 5 without recurrance, no scans needed.

What I experienced from the R-CHOP was general nausea, although I never got sick to the point of vomiting. My hair fell out. Major Fatigue to the point of hardly getting out of bed especially towards the later rounds. My wife made sure I ate healthy and often (actually gained weight through the chemo, it's very important to eat, even if you don't feel hungry).

Hope some of this helps, it will be alright.
Sincerely, Andy

Ross - thanks for your wisdom! Your knowledge is refreshing. In 2008, at the age of 45, I was dx with DLBCL with a tumor in my maxillary sinus cavity. It presented as a small dark red blister in the hard palate - it had made its way thru bone. It appeared over night and when I noticed it I thought I had just burned my mouth eating something a little too hot...this ended up freaking the medical field out! I called my primary care physician and told him the story, to which he advised me to go to the local hospital for a CAT scan. I thought this was overkill but obeyed anyway. Sure enough the scan came back positive for some type of tumor; sure wish my oncologists showed as much concern as my primary. After much jerking around by the ENT, who couldn't get enough tissue to make a correct dX the first time, then taking a vacation during this critical time after I'd been told it was an aggressive tumor. The second biopsy took place in the hospital under sedation, and rendered the evidence. After more jerking around by the powers that be, I finally started r-chop; after two cycles I fired my oncologist for sloppy treatment, to say the least; my wbc dropped to 15 during my search for a new oncologist; I ended up at Emory Winship Cancer Inst. in Atlanta. They continued my r-chop and stopped after the fourth cycle cause the tumor started to grow again instead of shrinking as it did initially. Then 20 radiation treatments to the head! Been in remission since Jan 09...I made it thru all that like an olympian...no missed days from work except the actual day I had a chemo treatment...lost all my hair 9 days after the first chemo (my Georgia Tech baseball cap saved the day) and continued to be a mom to my three teenage boys without missing a single soccer game! My physical shape has always been great - 5'10 and 155 lbs. Always been active and never abused any substances, including cigarettes or alcohol; the best guess for my cancer dx was the powerful fumes I inhaled in my woodworking hobby. This was a case study and I feel honored that the almighty chose me. Self-pity never entered the equation or "why me"..cause I had my children to raise and portraying a pillar of strength was my number one goal. Humor played a big part in my therapy (my sons named the tumor "Oscar", and it's part of my password for most things) Being serious and realistic had its place - but a good sense of humor goes an awefully long way! I tell people that cancer isn't all that it's cracked up to be...so far!

Dug this thread up on the second to last page of our NHL site. Very informative thread in explaining how hard it is to get the right DX and treatment. The final entry by AngelaB is a great example of weathering a storm and having a good reason to push ahead!

hugs, KB