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Thread: How fast can a lymphoma grow?

  1. #1
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    How fast can a lymphoma grow?

    I know asking how fast cancer cells grow is like asking 'how long is a piece of string', but it's really been bothering me.

    By the time I was diagnosed in late April with diffuse B-cell NHL IVB, my tumour was 16 x 14 x 10cm, which is massive. In volume it's... big. But I only started to have obvious symptoms, looking back, about four months prior to that. There were inexplicable things like shoulder pain and constipation and vague things like that. The oncologist says the tumour was high malignancy and extremely aggressive.

    So how far before the diagnosis might the cancer have begun? The reason I ask is that my mum was coincidentally diagnosed with breast cancer a month before me, and turned out to have a kidney tumour as well. (So we've been a happy family!). Her oncologist thinks she may have been carrying the kidney tumour for several years.

    Could I have been carrying cancer around for years, or is this type of tumour more like an acute, fast developing illness? Anyone want to speculate?

  2. #2
    Administrator Top User ChemoMan's Avatar
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    Hi Alexie

    It depends on the Lymphoma. DLBCL is considered an intermediate grade cancer and will kill in about 2 years left untreated. Burkitt's lymphoma is considered very aggressive, in fact it is the most aggressive human cancer and will kill in 12 months or less if left untreated. There is also a Burkitt's like DLBCL which is very aggressive as well.

    My guess is you had your DLBCL lymphoma for about 12 to 24 months, probably closer to 12. It is unlikely you had it longer than that as you would probably not be here now. There is always the possibility that you had FL first which then transformed to DLBCL in which case you could have had Lymphoma for many years. This could also explain your late staging at presentation as FL is nearly always discovered at stage 3 or 4 due to its silent nature.

    As I see it the answer is you have not had DLBCL for longer than 12 months as it is an acute fast developing illness, but you could have had FL for many years prior to diagnosis which then recently transformed to DLBCL as FL is a chronic slowly developing lymphoma.

    I hope things are going well Alexie, I am mindful of your surprise super sized treatment and I hope its not knocking you around too much. Please take care of yourself and good luck.
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
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    Thanks ChemoMan! That's a brilliant answer!

    So, next question... if I'd been carrying round a FL, would it have affected me in any way that I might have noticed? (I'm very mindful of the fact that my diagnosis of DBNHL was partly because they couldn't decide how to classify it. They said they hadn't seen a tumour present like this before... which still bothers me, particularly after reading Buffboy's story.)

    Thanks for asking about the treatment. I had another blood transfusion about ten days ago that did wonders for me. This time, while I had some energy, I did quite a bit of exercise (plenty of brisk walking) and started taking a multivitamin supplement. It's been two days since the last chemo finished and I DO feel in much better shape than normal. I don't know whether that's due to the transfusion or to the other stuff. Anyway, here's hoping things stay like this!

  4. #4
    Administrator Top User ChemoMan's Avatar
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    Hi Alexie

    The answer to the next question is probably not. FL is notorious for spreading around the body without making its presence known, hence the preponderance of late staging in FL.

    I'm really glad its all a bit smoother going for you now..... Here's wishing it remains so

    Good luck
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #5
    Senior User Buffboy's Avatar
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    Quote Originally Posted by Alexie View Post
    Thanks ChemoMan! That's a brilliant answer!

    So, next question... if I'd been carrying round a FL, would it have affected me in any way that I might have noticed? (I'm very mindful of the fact that my diagnosis of DBNHL was partly because they couldn't decide how to classify it. They said they hadn't seen a tumour present like this before... which still bothers me, particularly after reading Buffboy's story.)

    Thanks for asking about the treatment. I had another blood transfusion about ten days ago that did wonders for me. This time, while I had some energy, I did quite a bit of exercise (plenty of brisk walking) and started taking a multivitamin supplement. It's been two days since the last chemo finished and I DO feel in much better shape than normal. I don't know whether that's due to the transfusion or to the other stuff. Anyway, here's hoping things stay like this!
    I don't want to cause panic or anything like that, but I really wish I had sent my biopsy slides to a major specialist center in the US sooner. Especially considering the facts that 1) your lymphoma was classified as extremely aggressive, 2) was difficult to categorise and 3) "they had never seen anything like it" and 4) you obviously worry about it, I would advise you to ask for your biopsy slides and then send it to one of the major cancer centers in the US for a second opinion. If nothing else, just to get a piece of mind. It does not cost a lot - I can recommend Dana Farber and will be happy to provide you with the contact details.

    The thing with FL transformed is that usually this can be seen on the pre-treatment PET-scan as the FL parts tend to "glow" less than the DLBCL parts. But if I remember correctly, you did not have a PET scan prior to treatment start.

    Let me know if I should help you get in touch with Dana Farber. You cannot afford to find out about a misdiagnosis six months down the line (I'm not saying you will, I doubt that few share my luck, but lymphoma classification is apparantly a difficult thing)...
    Age: 33 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  6. #6
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    Thanks Buffboy, that's very good info. Actually, I did have a PET right at the start, just not at the mid way point, so I guess if it was a transformed FL, I would know about it.

    Part of the problem with my medical treatment is my lack of German. The oncologist I see now, and her colleagues when she's on holiday, don't or won't speak English, and my spoken German is really bad. I understand about 60-70% of what's being told to me and then only if the subject is familiar to me. I suspect this is deliberate - the outpatient doctors try and move everything through as fast as possible, and I think it suits them to have me not able to be able to engage in much conversation. To be honest, I have no idea how I would say: "please let me have my biopsy slides, I want an American opinion" - and then deal with the fallout!

    Which is lame of me, but I am not so sure the Americans would do a better job of it, as the cells from my biopsy were taken to a German oncology conference for them to discuss.

    But you're right, I do worry a bit that this isn't as simple as I've been told. Apart from the fact they had difficulty classifying the tumour, there is also the fact that it was Stage IV with all the B symptoms, which I've read means a poorer prognosis, plus the extremely elevated LDH, and a mid point scan that showed there was still more than a third of the tumour left. Also, I was very overweight (though not technically obese) until a couple of months before diagnosis, and I've also read research that overweight people have a poorer prognosis. I don't know if it counts that I rapidly became the correct weight for my body during the treatment - or whether losing 25% of my body mass in such a short time is a bad thing. Then again, my LDH is normal now, so I hope that means the disease isn't active.

    This all makes me sound like a raving hypochondriac who broods on this. Yet - and this is strange - despite everything that's happened, I still don't really think of myself as a cancer patient, probably because I haven't had surgery or anything disfiguring, and because so far it hasn't been such an awful experience. Being sick is tedious, but it's not traumatic. It still seems so hard to believe that I came so close to death, especially with the sepsis.

    Sometimes I feel guilty about taking up so much time and care, and taking so much time off work. Because all my symptoms now are chemotherapy related, and have been for a couple of months, all I think of is getting the chemo over with so I can carry on as normal. But then when the oncologist told me I had to have more chemo, because of the malignancy of the tumour, it really unsettled me. As you can obviously understand. Thanks SO MUCH for your info and being understanding about worrying about the prognosis, especially when you're having such an incredibly rough time yourself.

  7. #7
    Senior User Buffboy's Avatar
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    First of all, you don't have to specify why you want the biopsy slides. It is your legal right to claim them. Don't feel guilty about asking for them, they should be used to it.

    Secondly, do not put to much emphasis on the "conference". It makes you visualise a big hall full of 100 of the country's best pathologists all scrutinizing the slides. When my doctor told me I had DLBCL he said that it was not absolutely certain until the slides had been "reviewed on a conference". Later when I asked him "so what about that conference" he answered "Oh yes, it was a clear-cut case of DLBCL"... That speaks for itself.

    I think a "conference" is just a fancy label for a procedure at the hospital where the pathologists look the slides (rather briefly) - at least in theory - in order to prevent misdiagnoses. As you know, this did not help me much. And bear in mind that apparantly the pathologist department at my hospital is certified as one of Europe's finest(!).

    All I know is that Dana Farber told me that they were "shocked" at the Danish work. It just seems that a privately sponsored system like the American has advantages over the publicly sponsored systems in Europe when it comes to expertise and service levels. I hate to admit it, but this is my experience.

    I think at this point sending the slides to the US is a win-win for you. Either they confirm the German diagnosis and you will be really happy and it will give you the reassurance that you now seek OR they will say that this is something else and then you will pad yourself on the shoulder for doing this for yourself so that you still have time to act upon it. The issues you flagged seems to deserve some exploring.

    After all, it only costs between €1.300-3.000 for their review of slides AND any scans, documents etc. you may have PLUS a 1 hour consult with a specialist (by phone or in person). I think this is a small price to pay for something this important.

    You only have one life.
    Last edited by Buffboy; 08-29-2010 at 11:58 PM.
    Age: 33 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

 
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