Lymphoma, Explained

I’ve been anxiously awaiting my formal diagnosis for a number of reasons, one of them being that I could describe the specifics of my cancer in a blog. But, it looks like my diagnosis is going to be delayed again (will explain why later in the post) so now is as good a time as any to explain lymphoma!

To be honest, I had no idea what lymphoma or how the word Hodgkins related to it at all before being told two weeks ago that I have it. But based on the scans revealing a large mass in my chest, along with smaller ones at the base of my neck and shoulders, every doctor has said it’s 100% lymphoma.

I other words, cancer of the lymph system.

Bild_Medizin_lymphatic-system.jpg

Now, I am stil all learning this information too, so forgive me if it’s still fuzzy on a few details.

The lymphatic system is considered part of the circulatory system that moves “lymph,” a fluid that comes from the blood and returns to the blood.

“Lymph nodes” are probably the term you are most familiar with. They are clusters the size of small kidney beans that are located near strategic veins throughout the body such as the knee, elbow, armpit, groin, neck, abdomen, and chest.

Lymph nodes are important because it’s where blood is cleaned and filtered through. Germ cells and germ-fighting cells gather at the lymph nodes during illness (which is why you may notice swelling in the above areas when sick!). They also prevent bacteria, cancer, or other infections from entering the blood and circulating through the system

The lymph nodes act as an area that produce and store white blood cells, which are very, very important do your body’s immune function.

Still with me?

So that’s the lymphatic system, what does cancer of that system look like?

lymphoma.gif

Well, there are many kinds of cancers of the lymphatic system, which are divided into Hodgkins and Non-Hodgkins. Both start in the lymphocytes, which are those infection-fighting white blood cells that travel through the system in the lymph fluid. Lymphocytes are developed in the bone marrow until they mature and go into the lymphatic system – this is why lymphoma can mean leukemia too!

Hodgkins lymphoma starts in a group of lymph nodes anywhere in the body, but most commonly in the neck. It grows in a predictable, orderly way from one lymph node group to the next, but can eventually spread to almost any organ in the body through the lymphatic system or bloodstream. Hodgkins is diagnosed with the existence of something called Reed-Sternberg cells, derived from a “B” lymphocyte cell, when looked at under a microscope. Hodgkins is one of the most treatable cancers there is because it grows so predictably and responds really well to chemotherapy. I’ve heard survival rates from 95-98%.

Non-Hodgkins is a little trickier and a lot more common. It starts in the lymphocytes, in one of two cells: the T cells, or B cells. It often forms tumours, most commonly in the neck, and can also spread to any organ through the bloodstream. There are many more kinds of Non-Hodgkins lymphoma (I’ve read 20-50 kinds) depending on which cell it affects, and how those cells act in the body. Non-Hodgkins reacts really well to treatment too, but can be trickier to predict its growth.

Hopefully that all makes sense! Good resources are The Canadian Cancer Society and The Lymphoma Foundation of Canada.

That also why I’m (im)patiently waiting to hear a formal diagnosis on what kind of lymphoma I have, because every person is treated differently with their own individual chemo cocktail. But I’m ready to get the ball rolling on chemo already!

Unfortunately, the surgery I had on Monday didn’t pull enough live cell samples to be able to make a diagnosis. Well, according to preliminary pathology report anyways. As my doctor explained it, lymphoma can sometimes grow so quickly, the body doesn’t have enough resources to keep those cancer cells alive. Having dead cancer cells aren’t necessary a “good” thing, because I do still have an unwanted mass in my chest, and I do still have live clusters of cancer cells that are growing and spreading.

The only two “hot spots” of live cells in my body are under my right armpit, and around the main vein that goes into my heart. I’m scheduled to go into surgery tomorrow to have that lymph node in my right armpit removed, which I hope (!!!!) will be enough to finally get a diagnosis. The only other option is opening my chest and getting cells from around my heart, which is so scary I can’t even begin to fathom that option.

Anyways, that is where I am at right now. After weeks of nothing but good news, this latest setback hit me hard. If you’ve been following this blog for a while, you’ll know I hatehatehate surgery. But like I said from the beginning, one test at a time. One piece of news at a time. Big picture and all the “what-ifs” are likely to weigh me down so much I will sink.

Remember the days when I was blissfuly unaware of all of this?

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Posted on July 7, 2011, in Uncategorized and tagged . Bookmark the permalink. 44 Comments.

  1. I had no idea about any of this Susan-I appreciate the explanation.
    I know this sounds very silly but I have felt a bit of weirdness around the back of my neck the last few months (guessing just tense muscles
    or something,I am sure) but now you have me thinking I should see someone.It really is such a lesson we should seek answers to the smallest of things-which is definitely not in my nature.So by blogging
    you may get many of us to be more pro-active about our health and I thank you sincerely.

    I am sorry to hear you have to endure more surgery and hope it all provides the exact answers to the questions the docs have.Wishing so many positive thoughts your way and hope you can find little things to distract your busy mind at times,if possible.

    Hope something makes you laugh or giggle today-sending some brightness
    your way!

  2. Thank you for the explanation and differentiation of it all. I never knew how the word Hodgkins related to any of it either. Thanks for clarifying it all.

    And you will be in my thoughts and prayers with your surgery. You are strong, you can do this. And I am rooting for you!!!!

    xoxo

  3. A day at at time. Heck, an hour at a time, my friend.
    While it helps to have a better idea of what you’re facing, at the same time, too much information can freak you the heck out. Trust the doctors and their expertise, trust your family and friends to keep spirits afloat and trust that you’re strong enough for anything else thrown your way.

    We all trust you are, so hang in there–an hour, a day at a time.

  4. I just want to reach through my computer and give you a hug…

  5. Wow Susan, you are an amazing teacher! I didn’t have a clue what lymphoma was all about (yes, call me a bit naive) but your explanation was great. I hope that everything goes ok with getting the lymph node removed tomorrow. One step at a time. :) Hugs!

  6. Karen Strickland

    When you are finished with your treatments, I think you should become some sort of teacher/educator/motivational speaker. You are amazing! One minute at a time…you can do this!!

    • Agreed! Agreed! I know this experience will propel you to great heights in whatever comes as your calling! I’ve been saying this all along! Heck, you’re young enough to go back to school to become a doctor!! :-)

  7. Really great, clear, explanation. I’m pulling for you on the Hodgkins! Good luck with the second surgery! xoxo

  8. Michael Paciocco

    I’m so sorry you’re having such a hard time getting the diagnosis. Keeping my fingers crossed for you.

  9. When my dad was in the hospital after his accident it was surgery after surgery and test after test. When they wanted those things done it was like ‘go go go!’ But in between surgeries and tests we just had to sit there and wait for results, news, more tests, etc. So frustrating!

    Anyways, what I’m getting at is… hospital motto = “Hurry up & wait”

  10. Your explanation was very, very good. I had no idea of the difference or what the lymph system did. You ae amazing (in many ways), but that you write the most understandable explanation I’ve ever seen. You are a pillar…you are! I hate, hate, hate that you have to have another surgery right now, but I do appreciate that they are acting swiftly.

    When all of this is over and done and you feel 100% better and are 100% clear….please write a book….any book. Your writing has always been so damn good…even when faced with amazing adversity. May I please buy a signed copy – consider it your first order!

    Thinking of you, my friend….you’ve helped me and a lot of others.

    • I really want to write a book! But I’ve never been inspired enough by an idea to actually do it. I’ve been journalling every day since this journey began, so who knows if I’ll get something out of it.

  11. I am so amazed at how well you are handling this scary uncertain time. You are so strong and poised about it all when just a couple of weeks ago, like you said – blissfully unaware. I’m continuing to send prayers your way and I hope that this next surgery goes well and gives you the answers you need.

  12. I am an oncology nurse and I think Luekemia and lymphoma are the most difficult cancers to understand. You did a great overview! Keeping you in my prayers.

  13. Oh wow, sounds frustrating that they can’t seem to take enough each time they go in. You would think they would be over cautious about stuff like that and take extra! But everyone is only human i guess!

    Your attitude is awesome – it’s so true – one step at a time, one foot in front of the other.

    Keeping you in my thoughts! :)

  14. I hate hearing that you must undergo yet another surgery! I will be praying that they find what they need for a firm diagnoses so you can get started on your treatments!

    Thanks for the overview of lymphoma! I have read up on it in the past because it’s a bit more common in Celiacs. Seems pretty complicated,but you made it much more understandable! I’m just glad it’s highly treatable!

  15. Hey Susan,

    As your news unfolds it is in some ways a relief. Many bad things are being ruled out. I do know a number of people (4) who have had these types of cancer at your age. It was a difficult time when they had to go through this. Now many years later (20 + years) they are healthy, leading good and full lives. Treatment must have improved since then. This makes me very hopeful for you.

    Bye for now,

    Bev

  16. Oh, I’m sorry you have to go thru surgery again. Darn. Thank you for the explination on lymphoma. Still thinking of you every day, take care girlie.

  17. Ugh, sounds like you just need a body of Velcro so you can be easily opened and closed. I’m still always amazed how intelligently you present all of this esoteric and scary information. Your journalism training is still with you!

  18. Susan thanks so much for explaining this! We have a friend who was diagnosed with Hodgkins Lymphoma over 40 years ago (yes I said 40) and he is alive and well today at 66!!

    I continue to pray for you daily – certain positive thoughts and prayers can and do work miracles!!

    Love you xoxo

  19. Sorry to hear about the surgery, but at least something is being done. The waiting to start would be driving me crazy as well.

  20. Yowza, that is definitely a lot of info to digest! Sorry about the news that your surgery wasn’t all that helpful, but you’ll get there! You’re strong, young, and otherwise healthy- that will help you so much!

  21. You are stronger than you know.
    xo

  22. Thank you for explaining this! Cancer is still quite a mystery to me. I don’t think I’ve got it down 100% but that helped. You are amazing, as always.

  23. you are amazing.

    hang in there love – we are all rooting you on!!! :)

  24. As someone who did research on lymphoma (the cutaneous kinds; I worked with dermatologists), and had to explain the disease to people, I think you did a great job! :) I hope the next surgery goes well, it’s gotta be really frustrating to keep hearing “not enough of a sample” :P

    • My oncologist was in last night and even HE seemed frustrated about it!! I’m still wrapping my head around the disease. I don’t want to do too much research and scare myself, but I also don’t want to be clueless when doctors start using terms I’ve never heard before.

  25. Susan- I will be saying a prayer for this surgery coming up. Hang in there and you’re right- one day at a time. Sending a hug from San Francisco.

  26. Thank you for the easy to understand explanation! I bet it is tough to educate yourself about all of this without letting too much of the internet scare you. You are a very level headed woman who should most definitely write a book when all of this is behind you!

  27. Ooph. I’m very familiar with cancers, especially lymphoma, because I worked in pathology for two years. What I did, actually, was take specimens from surgeries and prepare them for the diagnosis. Frozen (stat) diagnosis is when the specimen goes to the pathology department as soon as it is removed from the patient, it gets frozen in a cryostat, and cut using a microtome blade. The slices of tissue get placed on a slide and dyed…and sent to the pathologists to be diagnosed. So, I’m wondering if they’ll do that for you. Otherwise, the specimen is sent to pathology, cut into pieces where the cancer is located/where they see abnormalities, and then sent to a histologist to be set in paraffin and dyed with all sorts of special, tissue-specific, cell-specific dyes. Then the pathologists get the slides (sometimes upwards of dozens) to study and diagnose. I’m not sure if this information has been explained to you…but at least you have an idea of where your tissue goes. lol I hope they can at least do a frozen section on what they sample, because then you have a pretty quick idea of what it is. Of course they still send the tissue on for more immunohistochemistry.

    I’ll be thinking of you Susan. Sleep well…and I’m so glad you’re looking into what makes it all tick. The worst thing to be is uneducated. The more you know, the better off you are, in my eyes.

  28. Thank you for the detailed account! I had no idea what it was, to be totally honest. I knew it was bad and I hated it, but I am glad that I am no informed. I am crossing my fingers that the surgery will result in a definitive diagnosis. Love you.

  29. Gosh, after all I’d been through with my Dad, I never really understood the basics until this post! I even had to go back and look up the kind my dad had and it was non-hodgekins, but he had a very incredibly rare form of large cell NH that was called “richtor’s transformation”, which is why it was so bad. He started off with just CLL (chronic lymphocytic leukemia)= that transformed to the lymphoma. And yes, he did get a mass in his neck but the radiation did a great job of zapping it.

    We’ll be stonetexting each other tomorrow :-) I can’t wait til we’re both through our procedures!

  30. Good luck today pretty lady, I hope you you get some answers x x

  31. Wow, Thanks for all of the information, I had no idea. Good luck with everything and I hope you get the answers you are waiting for.

    Thoughts and prayers

  32. Good luck today! I hope this leads to some answers and treatment. Thinking of you.

  33. We want you to know you are in our thoughts and hope for speedy recovery. I do not want to sound cliche’ however I want to put something positive into the well wishes as well as every one else.
    I found this article which talks about a really optimistic outlook for lymphoma recovery associated with antibody therapy.

    http://www.dailyrx.com/news-article/follow-therapy-shown-improve-lymphoma-survival-rates-11662.html

    I really appreciate you sharing during your time in the ICU an recovery. Please share what you feel comfortable with and I would be very interested in what particulars your follow up treatment take.

  34. Hey Susan, I hopped over to your blog from another blog participating in the fundraiser. :-) I’m not a blogger myself, but I wanted to offer my help in your journey with lymphoma… I’m about the same age as you are, and am a medical technologist currently doing oncology testing (flow cytometry, to be specific)… so I’m very familiar with the different types of lymphoma and leukemia. If you have any questions, especially once you get a firm diagnosis, feel free to email me and ask! angeltearsmc AT yahoo DOT com. Best of luck to you in your fight!

  35. Hi Susan: I was searching around the net for a good banana bread recipe, and found yours from a couple of weeks ago. One thing led to another as I looked at your blog, and I was stunned to learn of this newest development with cancer. (I think on your banana bread recipe post you said something about your veins popping out, and I was concerned, so kept reading on…) Yes WOW….you have manifested a most courageous spirit, and seem so transparent and amazing through all of this. I just want to say that you will be in my thoughts and I will pray! I will be checking back soon to hear more as you hear more. Blessings to you! Hugs from Michigan :)

  36. Hang in there! My mom (at age 78) kicked Hodgkins and has been clean over 2 years now. Sending you healing thoughts while you wait for your specific diagnosis – reading your posts it sounds like you have a good support system :)

  37. Hello Susan,
    My name is Molly and I live on the California Coast near San Luis Obispo. I just came across your blog when my husband showed me the WordPress blog. One of my friends is currently recovering from Hodgkins (age 42). Another friend Kathy had it 20 years ago when she was your exact age. They were both treated with the “Stanford 5″ treatment protocol, Kathy being the 3rd or 5th person to take that treatment in it’s early stages. Stanford Hospital in Northern California developed it. I imagine many leading hospitals develop their own treatment methods. Hang in there! You sound like you have an excellent attitude and spirit that will get you through any trial. I am rooting for you from California!!!

  38. Brandon from Virginia

    Susan, I found this blog through a Google search, and I understand what you’re going through. I finally saw a doctor back in May, and he told me that I would be fine. However, he recommended an MRI, which turned into a fine needle aspiration, then an open biopsy, because everything kept pointing to lymphoma. Very frustrating, esp. because nobody seemed urgent about what to do, giving me a slightly false sense of hope.

    Yesterday, I was diagnosed with a form of Hodgkin’s lymphoma. And although I prepared myself for the announcement and read about the treatments, the news still left me a bit numb. I’ve done lots of reading the last 2 months, and it eases a lot of my fears, esp. since I haven’t felt any of the symptoms. You’re in my prayers and will pull through…God bless you!

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