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DLBCL, Testicular lymphoma, CNS relapse

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

I just got diagnosed with DLBCL. I'm not sure yet where it started but I did have an orchiectomy because of testicular swelling. I'm a 35 years old and I guess this is rare. Seems like it is very treatable but the chances of CNS relapse is greater in testicular lymphoma. If my cancer started in the lymph nodes and spread to the testicles is that concidered testicular lymphoma?  Does anybody here have experience in this or know someone who has?

PBL
Posts: 184
Joined: Jul 2016

Hello Justin,

Sorry to be welcoming you under your circumstances.

Extranodal involvement can be primary or secondary. "Primary" basically means that the lymphoma cannot be found anywhere else than in the considered organ - with a small allowance for the regional lymph nodes, and provided the organ tumor is greater than the nodal one.

To answer your second question: I remember Jim M started posting here in June 2017 with a similar concern (DLBCL - testicular involvement - question about methotrexate prophylaxis for CNS).

Hope this helps. Do keep us posted.

PBL

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

If it's secondary than will it be considered testicular lymphoma or DLBCL or does it make a difference? Trying to figure out the overall prognosis for CNS relapse. Do I have less of a chance of CNS relapse if it's secondary?

PBL
Posts: 184
Joined: Jul 2016

I cannot tell whether there would be a difference -- my guess is, there would not be any. I do think, however, that it is too early for you to start guessing what the distant future holds... Your immediate focal point should be treatment.

I can only advise you to initiate an open and frank conversation with your medical team, and particularly your hematologist. Make sure s/he knows you are the type of patient who wants to be informed on all aspects of your illness, treatment, etc. Statistics are what they are - ballpark figures. Only your doctor can give you information that is truly relevant for your specific case.

Try not to let anxiety take control - it never helps.

PBL

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

I have my first appointment with my oncologist on Thursday any advice you can give me would be appreciated. Being you were diagnosed with lymphoma you have a better understanding than me. By the way what type of lymphoma do you have if you don't mind me asking?

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Justin, I had DLBCL with breast, liver and somewhere in between involvement. because of the breast involvement I had 3 Methotrexate treatments in between the 6 R-Chop. The methotrexate was considered prophylactic because my CNS was clear and they wanted to keep it that way. I did relapse but not with the CNS. I then did RICE and had a stem cell transplant Exactly 1 year ago today!!!! 

It perfectly normal to be scared, I still am and not quite sure that will ever end. 

Sharon

PBL
Posts: 184
Joined: Jul 2016

Justin,

I was diagnosed with Primary Bone Follicular Lymphoma following a spontaneous pelvic fracture. I was treated with 6 R-CHOP from March to June 2016, which put me in remission. As my strain of lymphoma is indolent and prone to recurrence, I am currently on a maintenance course of Rituximab, which does not prevent me from working full-time.

Since you are asking for advice, may I suggest you take a list of your questions and preoccupations with you to that first appointment, as well as a pen and note pad. Do not hesitate to ask questions so that you come out of the hematologist's office with a clearer understanding of your disease, treatment and what to expect for the immediate future as well as the longer term.

Do let us know how it goes.

Wishing you well.

PBL

 

Simon24
Posts: 43
Joined: Oct 2015

My husband was diagnosed with DLBCL in July of 2015. He was 69 at diagnosis. The urologist/surgeon thought he had testicular cancer, but his partner suspected it might be lymphoma.  It turns out the biopsy confirmed it was lymphoma.  It originated in the the right testicle and he also had a orchiectomy with removal of part of the scrotum.  He also had a huge mass near the abdominal aorta, which meant he was technically a stage 4. The abdominal mass was not removed by surgery.  He had 6 rounds of R-CHOP, 4 methotrexate treatments in the spine as a precaution against spreading to the CNS, and 17 rounds of radiation.  His PET scan in October 2015  showed that he was in remission.  I'm not going to tell you that it was easy for him, but he continued with many of his activities during treatment.   He is very active in the American Legion and several fraternal organizations and doesn't like to miss meetings. There was only one time that his doctor told him he couldn't go to a meeting and that was because his platelet count was too low.  I insisted on driving him to his meetings and treatments, because he was pretty tired after chemo. Luckily, we are both retired and he was able to sleep when he felt tired. He lost his sense of taste during treatment, but he kept on eating because he knew I would nag if he didn't.  He did regain his sense of taste after the chemo ended.  He still has peripheral neuropothy in his feet from one of the drugs, but it is not painful and he just walked in a two mile parade, so it doesn't keep him down.  He says he feels like he has sand in his shoes all the time.  He had his port removed in June of this year.  He could have had it removed sooner, but he elected to keep it longer just in case there was a relapse.  My advice is to not worry about what you have may have read on the internet about DLBCL of the testicles. Many of the sources are outdated.  Follow your doctors advice and don't be afraid to ask questions.  My husband's oncologist was very encouraging and pretty much told us at our first meeting that, "We're going to take care of this."  I hope all of your treatments will go smoothly.  Wishing you the very best.             Simone

Jim M
Posts: 25
Joined: Jun 2017

Hi Justin

I was diag. DLBCL with teste involvement. I have had 5 rounds of R-Chop and 5 rounds of intrathecal methotrexate. I don't regret doing the methotrexate. The risk of a cns recurrence is high if it presents in the testes and the intrathecal tx lowers the risk. Side effects are manageable. The headaches really decrease if you take 2 acetomenaphen before the procedure and lie flat on your back for 2 hours after the procedure.

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