Symptoms of Lymphoma - Need Advice

Max Former Hodgkins Stage 3 said:

Tough situation

 Annabell,

I am quite sorry about your brother's sickness and all of the cancers that have affected your family.

I was diagnosed with lymphoma following a trip to the ER for chest pain also. The ER doc thought that I was having a heart attack ("unstable angina") but subsequent scans showed that it was almost definitely lymphoma. Geeze... how scary similiar is that ?  I ended up being late stage 3, with involvement virtually everywhere from my collarbone region to my pelvis, but had never felt an enlarged node before in my life. In fact, five years later, I STILL have never felt a lymph node anywhere, although that is extremely odd and unusual.  Of course, only the biopsy can confirm any form of cancer.

Almost always when some nodes are grossly (vastly) enlarged, there is a lot of involvement with other nodes, so it would surprise me if they need to go for the nodes near his heart; the armpit is a common area for extraction.  Needle biopsies are another option, although they are somewhat less accurate than excise (surgically cut out) biopsies.  And, the node chosen need not be the largest one.  There is no reason to prefer the "largest" node that I am aware of.

Honest opinion: it sound very likely that he has lymphoma.  I remember that day in the ER so well, and what followed rapidly thereafter. It is just so much like my experience, plus the CT presentation seem very much like lymphoma. 

The good news: all cancers are very different, and lymphoma is among the most treatable and even curable of any. 

Things to know:

-- Even very late Stage 4 lymphoma is usually quite treatable and even "curable," although doctors no longer like the term "cure," saying instead "total remission" or "NED" -- "no evidence of disease" (usually following a PET Scan). I suspect this is the same with colorectal and breast, but not certain.

-- Late stage lymphoma is virtually always treated with chemo, and usually JUST chemo. Radiation is rarely used in very late stage disease, and surgery almost never. There are rare instances of late-stage needing radiation, usually in what is termed "bulky disease," but as I stated, it is uncommon.  Very early stage lymphomas are treated with radiation more often, usually with chemo supplementing it..

-- There are over 30 common strains of lymphoma, but the main division is between Hodgkin's Lymphoma (HL) and Non-Hodgkins's Lymphoma (NHL).   HL has 5 common variants, and NHL has 25 or more.   NHL is a lot more common than HL. There are aggressive and non-aggressive forms of HL and NHL, so there is no way to say that one or the other is "better" or "worse," what you want is just them least aggressive ("indolent") strain possible.

-- To be considered Stage 4, lymphoma must be in a secondary organ or organ system.  By far the most common secondary organ for lymphoma is the bone marrow. Second most common is the lungs, but any organ can be invaded. If your brother gets a positive biopsy, they will soon thereafter do a bone marrow biopsy as well.

I have had two personal friends in the last few years who presented with horrible, very late stage disease. Both are cancer free today.  I am myself lymphoma free now, over five years later

I stress again that lymphoma, even when very far along, is something that oncologists are very successful at addressing.  Please let us know what you and your brother learn.

max

 

Annabelle,

It is still hard to tell what your brother's trouble is. Only the doctors can determine this after thorough investigation. The best thing to do is just wait and try not to worry too much.

Sten

Annabelle41415 said:

Thank you both

Thank you both for your comments.  My brother had a CT scan done this morning of his neck because the doctor yesterday thought his neck felt swollen.  They did find something there about the size of a golf ball.  My previous post didn't state that there is a lymph node on or near the pancreas and two spots on his liver and now his neck.  I've been in the waiting game and now he is waiting for a biopsy maybe on Monday.  The wait and see game is terrible at this stage of the game and I've been there.  The scanxiety is immense and I'll agree with your comment about waiting for the biopsy to determine what is involved, but I've seen too much cancer and this scenario doesn't sound good by any means.  I'm scared and I'm praying that all is well and appreciate your advice and concern.  Thank you for being here for other members as well. 

Kim

Kim,

I understand that waiting is indeed excruciating...often more difficult than knowing. At least with facts in hand, a person can begin a course of curative action.

I read your own bio, and it is incredible. I recommend that everyone here at the Lymphoma Board read your "About" section.  But at least your henious journey teaches that there is ALWAYS hope, always.  For your brother there is hope.

Know that lymphoma in or on another organ, like the liver, is of course NOT liver cancer; it is lymphoma in or on another organ. The good news about that is that it is then treatable as lymphoma, with lymphoma-specific drugs.  Many organ cancers are much harder to treat or cure than lymphoma ordinarily is.  I was told initially nearly six years ago that I had nodes "in my lungs" and all over several other important areas (wrapped arouond the superior vena cava, for instance), but the spots in the lungs ended up not being lymphoma (or cancer), and the nodes elsewhere were simply cured with the chemo, along with all of the other nodes. The surgeon who looked at my first CT, before my biopsy, was looking at it on his computer, and I asked how bad it was.  He somewhat lost his composure, and blurted out, "Look at it ! It is everywhere !" But I am lymphoma-free over five years later.  So your brother's case  may well not be as bad as it currently seems.

As Sten noted, nothing but a biopsy can confirm that this is lymphoma, but it is hard to imagine what else it might be, as you noted his own doctors stated.

max

Annabelle41415 said:

Wonderful

That is wonderful news that you are NED and appreciate your prayers.  This disease just takes your breath away at times.  It is a gift that keeps on giving sometimes, unfortunately.  I'm always praying for the people on the message boards and wish you continued health.  Thank you for your response.

Kim

Hi , Kim,

 I am from the uterine board but sometimes check in with the lymphoma board as my 33-year-old nephew was diagnosed with stage 2 NH lymphoma . He is doing great - no sign of disease (NED).  If your brother is anything like his tough sister , he will do great with treatment. I wish you and your brother the very best!

Warm Regards,

Cathy

Annabelle41415 said:

It's a really Bad Word

No one knows how we feel until you go through it so thank you for your candid response.  You are right it is the worst thing you could hear those three little words "you have cancer" .  Thanks for your prayers for me and my brother.  Hopefully he goes in tomorrow for a biopsy but it seems like where he is at it could take a couple days and up to a week.  Glad you are all so positive on this board. It makes things much easier.  We are also on colorectal board.  That is a hard place to be but we all support one another like you all do.  My prayers and thoughts go to you all.

Kim

Sorry about being so lame in writing.  Just wanted to welcome you and thank you for your upbuilding words.  I am sorry for all you have been and now what you and your brother, and family are going through.  Please know you are in our thoughts and we are glad to have you join us.

Becky

I just read all the posts and truly this site is a testament to the good in people .

I can only reiterate what others have stated.  Lymphoma is very treatable and curable.  I'm past the three year mark now and am very grateful.

Your brother is welcome to join us here.  You and he are not alone.

Hugs to you both,

Jim

Hello again, Kim:

Re waiting for the results of a test:  

Last year I had a scary test and waited an entire week for the results, which turned out to be OK.  I would not do that again.  If I am in that position again, I would definitely call my oncologist, and at least try to get some information.

Nancy