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DLBCL with involvement in testes: What is the risk of a local recurrence without radiation?

Jim M
Posts: 25
Joined: Jun 2017

Hello everyone,

   I'm almost done with 6 rounds of R-Chop and 6 rounds of intrathecal methotrexate. My doctor (a hematologist) ata public hospital in San Jose, Costa Rica said he doesn't think I need radiation.

  I am stage 1, localized to the teste with a tumor that measured 3x2.5cm (which is too small to be considered a bulky tumor and my lactate dehydrogenaseis normal.

  I am reading conflictinginformation. A lymphoma specialist in the states say I should have the radiation as the risk for recurrence is high. But some research suggests radiation is not necessary for someone in my situation. One study said radiation was contraindicated after R-Chop.

  I would like to hear your experiences and opinions of those who had radiation and those who haven't.

  Thank you.

 

dana-mihaela's picture
dana-mihaela
Posts: 39
Joined: Sep 2016

I cannot give you advice since this is personal decision. I will tell you of my own experience. I had MZL which is small B cell indolent type so different from yours also the reccurent type. My tumor was located in the pelvis area towards the spinal cord and it was bigger than yours 6x3 cm still not considered bulky. I did 5 rounds of R-CHOP and was proposed radiation by my doctor after finishing the chemo, which I declined. My reason was the side effects that will be on the pelvic area which is closed to the digestive system that would impact using a diet of mostly plant based. No matter how precise the ratiation is, the possibility of great damage to the intestines is high. Also my tumor was not that bulky which is over 10 cm. 

I saw you were asking about the PET scan. I did one after chemo #3 and was NED and I did one after finishing chemo 3 months. Probably just to have a baseline. PET scan involves a lot of radiation as well and here in the States is very expensive around $12000. Sometime it is not very accurate so if you can have maybe a CT scan of MRI that could see what happened with the original tumor will be fine. 

Good luck to you,

Dana

Jim M
Posts: 25
Joined: Jun 2017

Thank you so much Dana. I have had ct scans which showed no activity. I also had a normal brain mri. 

 

 

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

I too was just diagnosed with DLBCL with involvement of the testes. I haven't received treatment yet still in the testing phase. I have a pet scan scheduled for tomorrow. I too am worried about reoccurrence. There's a clinical trial available. A new drug called ibrutinib which has been approved by the FDA and is currently in phase 3 of testing. It's showing promising results especially if your DLBCL is non Gcb. The clinical trial is used with R chop in the first line of defense against intermediate or high risk DLBCL and it can also be used if there is a reoccurrence. I'm also curious about radiation because my oncologist mentioned that as well but I don't know what my treatment plan would be. 

Being that you have DLBCL of the testes...is it primary to your testicle or did it start in your lymphatic system and metastasis into your testes? Just curious because it seems if it's primary testicular lymphoma (which DLBCL starts in the testes) had a different prognosis than if DLBCL starts in the lymphatic system and spreads to the testicle (secondary). 

Jim M
Posts: 25
Joined: Jun 2017

The way I understand it is primary in the testicle and shows up nowhere else. My doc. Used the term "no infiltration". As others have said since its fluid and in the blood it could be elsewhere.

Jim M
Posts: 25
Joined: Jun 2017

Justin, you asked about the chance of cns relapse. I just read that with DLBCL with involvement in the testicles the chance of cns relapse is up to 30%. High in my book.

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

Hey Jim, I strongly suggest you look at this link:

https://www.qxmd.com/calculate/calculator_428/cns-international-prognostic-index-in-diffuse-large-b-cell-lymphoma-cns-ipi

 

1 out 3 or 33% chance of relapse for people with DLBCL but that statistic isn't just CNS relapse that can also be relapse in the other testicle or lymphatic system. Since your stage 1 you have a very slim chance of a CNS relapse. I think you will find the link above comforting. You have a higher risk of relapse in the other testicle but as you said maybe with target radiation you can prevent that. 

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

What helps me is I don't see it as 30% chance of relapse I see it as 70% chance I'll be just fine and those are good odds. We both got this! I wish you the best Jim

Jim M
Posts: 25
Joined: Jun 2017

Thanks Justin. Now I have second thoughts about radiation. Radiation in that area increases the risk to develop prostate, pancreas, colon, rectal,kidney or bladder cancer. Do I really want to do that?

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

I thought that's why you do radiation so it doesn't spread locally? I think there's a big difference between 15 days of radiation and 30 days...I feel like 15 days of targeted radiation the risk are minimal. I could be wrong but that's an excellent question. Seems there's alot of people on here who've had 30 to 40 days of radiation in miscellaneous places and are doing fine. I feel really good about being stage 1 with a low IPI score. I've read studies and have heard of people with our diagnoses have orchiectomy done with nothing else and have survived it...but at the same time I would want some sort of preventive treatment. My question is let's say and this is my situation that orchiectomy was performed and you undergo all testing...MRI of the brain, bone marrow biopsy, blood test and pet scan and there's no evidence of the disease and the mass wasn't connected to anything such as the skin or spermatic cord...should I undergo chemotherapy and radiotherapy or should I just leave it alone? If I did leave it alone with no treatment and it cancer came back being that I haven't went thru treatment do I have a better chance of defeating it and would be concidered 1st line treatment? 

 

I know you shouldn't focus on statistics but with DLBCL you have a 1 and 3 chance of reoccurrence. That means there is 60 to 70 percent chance it won't relapse. If you get chemo and radiation that number should increase even more or you can roll the dice. I would like to think stage 1 has a great chance of being in that percentage. Curious to hear your thoughts...

Jim M
Posts: 25
Joined: Jun 2017

Hi Justin. I am glad I went through chemo. I finished last Friday. Here I was given epirubicin instead of doxorubicin. Epirubicin is a more modern drug used widely in Europe and has lower cardiotoxicity than doxorubicin. I never had a PET Scan for this and my doctor doesn't intend to order one. All my other tests show that I'm clear. If it does relapse to the brain it makes for a poor prognosis. My doc. will review the literature on radiation. There is no guarantee he will order it for me and I won't fight him on it. I probably can't afford to pay for radiation. There is evidence (limited) that suggests once rituximab was introduced it lowers the need for radiation. Plus some doctors choose not to use radiation on people like us (low ipi score, stage 1, localized) and I read a few reports stating that overall survival and disease free from recurrence is about the same in both groups (those having radiation and those who do not). It is a very personal decision and it's hard to know if we ever have enough information to make informed decisions. My doctor has 40 years experience as a hematologist at a public hospital (many,many patients) and has not seen many with our type. My best to you Justin. I believe ultimately Jesus Christ is my healer and uses all resources necessary to heal me. It's a step of faith. 

Jim M
Posts: 25
Joined: Jun 2017

I just want to add that about 10 years ago I had melanoma stage 3C which I discovered as a lump in my right armpit. The tumor and all my lymph nodes were removed. Later I decided on immunotherapy and radiation to the armoit. Apparently the radiation decreased the% of a local recurrence from 70% to 10%. But my doctor at that time said radiation can increase my risk fo getting other types of cancers. So I haven't had a local recurrence but I get a cancer of the lymphatic system. Radiation? Go figure.

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