Possible lymphoma, how to deal with uncertainty

Good Day My name is Jon Sylvester. I lived for years with non-hodgkins lymphoma. I kept going to the Dr. for years complaining about back pain and groin pain. The Dr.s said it was because of my active life in rigorous sports. Well it was my chiropractor who begged my Dr to give me an MRI. It turned out that I had state 4 lymphoma. I would get second opinions and go to the best medical care you can Dana Farber, etc, Just get the best for yourself even if it isn't lymphoma. Never settle for second best when it comes to living a pain free life. Stay well Jon S

 

On 1/23/2008 KathyAM wrote:

Hi, I'm new here.  I do not have a diagnosis yet but my internal medicine doctor thinks I either have lymphoma or I am reacting to something in the environment. I am 38 (almost 39), female, and have had enlarged lymph nodes for at least four months.  I saw my internal medicine doctor three weeks ago, had a bunch of lab work that was normal, and then saw her again today.  She noted no difference in the nodes and has referred me to an ENT doctor for biopsies. 

I have enlarged lymph nodes: all of the left submandibular ones, behind the left ear, left tonsil, down the left side of my neck, left supraclavicular, a few left submandibular.  They are painless and rubbery.  Other symptoms: sleep study showed limb movements that occur while I'm asleep, including REM sleep (this is atypical of RLS, not sure if related to lymph nodes), reddish scaly patch of skin to the left of my nose resolved with a prescription antiinflammatory, very occasional night sweats - once a month at the most, and several times a day I will have a random burning sensations that last a few seconds up to several seconds...these occur just about anywhere and I'm not sure if they have any significance.  Two years ago I tested positive for mononucleosis but am negative now. My problem right now is dealing with the possibility of having a potentially fatal disease, but at the same time thinking that I am worrying for nothing.  If I do have it, I think I may have jeopardized my health by waiting so long for an appointment with my doctor.  I could have seen another doctor earlier and then I would already know what was going on.

How did you deal with it, at first with the uncertaintly and waiting, and then with the actual diagnosis?  I guess if you have to get cancer, lymphoma isn't the worst.  My mother-in-law had Hodgkin's disease when she was in her teens and is now well into her sixties.

Thanks for reading.  I don't want to worry my family too much about this, but need someone to talk to.

 

 

Kathy,

I read your message. I don't know if you have a diagnosis yet or not. My opinion is not to worry about things until they are real. If you are diagnosed with Lymphoma, it is not the end of the world. Like you said, your Mother-In-Law has survived for many years. If you do get the diagnosis of Lymphoma, there are many treatments for it. I am an oncology nurse and a 2 time lymphoma survivor. I had Chemo the first time in 2001,; and chemo/total body radiation/and stem cell transplant in 2006. If the biopsy diagnoses Lymphoma they will specify which cell type of Lymphoma you have and treat it accordingly. I still have follicular cells. I have 40% chance that they killed the diffuse large B-cells with the stem cell transplant. I live by the "Serinity Prayer" which says it all for me. Having had cancer has given me more appreciation for each day of life for what it is. I enjoy my days at work (I am able to encourage cancer patients daily as they see me doing well and working on my feet all day 12 hours shifts), and I enjoy my days with my family. Every single day of life is significant. You definetly need to stay on doctors until you are satisfied with your diagnosis and that an answer has been found. I was put off for 3 months before insisting they find out what my problem was. I finally went to the emergency room with a 102 temp, excruciating pain, and they told me the flu had been going around (it was September). I told them I have not had the flu for 3 months and they needed to find out what was wrong with me, I was not going home. So they did. Otherwise they wanted to send me home with the diagnosis of the flu. The second time, I had to have two biopsies before they got it right. They had not preserved the first sample properly and the B-cells disappeared before they got to the final destination lab. The cells were seen at the first 3 labs the slides were sent to, but not the 4th. They preserved the next biopsy properly and got it directly to the 4th destination and they saw the B-cells which are very aggressive cells and need to be delt with immediately. Follicular cells and slow growing and they just wait and watch till they cause a problem. You ARE responsible for your own health and do need to make the doctors do their job. I have faith in God first, and do have faith in my Oncologists to do what is best for me. You need to find a doctor you are confident in and feel comfortable with. Early detection, of course, is a key to cancer treatment. Actually, having cancer gave me the opportunity to take a look at my life, realize what is important, and live my life in that direction. I could go on forever with this, but will spare you. I do know that I am not going to save living my life until I retire, I am going to live it everyday as it comes.

God Bless You

 

On 1/26/2008 Meagain wrote:

Hi.  I just read your message, and it took me back to my time of uncertainty and diagnosis.  Let me tell you, I was the biggest baby, crying all the time...  My actual for real diagnosis came after the ENT removed the enlarged node in my neck, as the biopsy was inconclusive for some reason.  That was in April '06, and it was like a death sentence.  I fell apart, imagined major changes in my body that were just normal things, and then my mother was diagnosed.  That took my mind off myself; she was a trooper, but lived only 47 days after being told she had cancer, never a chance for treatment.

I, on the other hand, have been on the "watch and wait" program, and after falling apart, pulling myself back together, knowing I will fall apart many times, have learned that hysterics don't make it easier, and have grown pretty matter of fact about it all.  That is quite possibly because I have not had to go through chemo, as mine is indolent.

The best advice I ever could hope to give someone is to LIVE.  For so long, I used my days up 'dying', and now I realise that those were wasted days.  LIVE, and be grateful you can still breathe, and you can wake up, and just for a few moments at  the beginning of the day, you don't even think of cancer.  After a while, you learn that much of your day can be spent without thinking of it.

Don't spend time looking for new symptoms, as they will show quick enough.  I try not to check myself (I used to be frantic about finding changes, and stress is not good), and instead I note the changes and let the doctor know.  He tells me to tell him about itching, night sweats, and weight loss that I am not trying to achieve.  That's all.  Easy enough to keep up with.  In between doctor visits, I have too much living to do.  He said he would tell me when to worry, and I believe him.

Think positive, it helps.  It has been right about 2 years since I noticed that swollen place on my neck, and I have them other places, but I am doing wonderful.  It is always at the back of my mind, but when I am stressed, it is not over the cancer anymore.  Not until he tells me to worry, anyway.  you learn to deal.  You really do.

Until your doctor tells you to worry, breathe in and breathe out.  There.  You made it through another second =).  Keep it up for as long as possible, and enjoy life.  Don't waste it with worry.  It seems difficult now, I know.  But it gets easier.  I promise.  And I tend to become a drama queen when I let it get to me.  It's been quite a while since I have felt the need to fall apart, though I know it will happen a couple of times, and I will survive.

2 years ago I was planning my own funeral.  Now I am planning my first home, as the future does require a place of my own to enjoy with those I love.  If that word is spoken in my new home, There better be a good  reason to bring it up.