Need information on pure mature Teratoma...

[AmyC]

My 19 year old son was just told by our urologist that his pathology came back Pure Mature Teratoma. His bloodwork, CT scans of his pelvis and his xrays were all clear. We were told that this type of tumor is very rare in an adult and he wanted to watch him very closley...testicular u/s. cat scan, xrays and bloodwork every 3 months. He mentioned getting some more infromation from a specialist who had some first hand knowledge of this type of tumor...a Dr. Edward Messing from Rochester, NY. When he talked to him he recommended we send all the tests and pathology up to him for a second opinion and that Jake needed to have xrays every 6 weeks. I am so confused! I wonder if anyone has any information on a Pure Teratoma? Thank you so much...

[Fed]

Pure mature teratoma is indeed rare. For starters, it's a purely "surgical" cancer in that it is not responsive to chemo, so if it recurs, it will have to be surgically removed. Constant observation by scans is necessary, though I don't know in what frequency. Due to the rarity of the pathologic findings, I agree that a second reading of the slides should be done, preferably by a pathologist with specialization in genitourinary oncology.

[Aegean]

Hi Amy,

Sorry you had to find us, but you are in the right place. Yes, a second opinion on the pathology is a fantastic idea and since you are in NY State, Sloan in NYC would be your best bet.

Since teratoma does not respond to chemo, an RPLND is something that could be discussed, by I would opt surveillance if it makes sense.

After you have confirmed the pathology (which I would get done asap at Sloan Kettering) a more concise game plan can be put together. I would also have your onc consult with Dr. Bosl at Sloan or Einhorn at Indiana as to next steps although surveillance is reasonable is they are fairly sure that it was confined to the testicle and that it is now removed.

Others will chime in too, very soon I am sure.

[Scott1974]

AMYC,
Your sons tumor sounds identical to mine. I was diagnose in may 2009 with pure mature teratoma. It is very rare and is hard to fined any specific info on it. It seems to be so rare that they just lump it into other non-seminoma studies. The good news is that it very slow to grow. It tends to grow more than actually metastasize, but it can metastasize.
I'm assuming all the bloodwork was normal?
What size was the tumor?
The second opinion on the path report is definitely needed to make sure it is pure mature teratoma.

I viewed this as good news to recieve (if thats possible) because it is less likely to spread. Also it meant no chemo.

I currently get the bloodwork and chest x-ray every month and a ct scan every 3 months for this first year. So far I've been clear since the initial surgery.

Good luck and feel free as any questions or send me a private message if you wish.

Scott

[AmyC]

Thank you so much for your quick replies! This is the first time since the pathology came back that we have heard first hand knowledge of the teratoma. I just received a copy of the pathology so here is the information :

Right Testicle
Mature Teratoma
Tumor Size 3x2x1.6
Tumor Invasion Negative
T1

Any information that you can give me would help so much!

[Scott1974]

Amy,
I did a lot of research after I was diagnosed and have a few case studies I did find. When I get home from the office tonight I'll see if I can post a link to them.

The new pathology report will give you a little peace to make sure they are positive it's pure mature teratoma. I say this because it is rare and the path report is critical to help determine your next steps. If they verify the original findings then you at least are sure of what your dealing with. Then, if it is, your options will pretty much be surveillance or the RPLND.

I'll post what info I have later.
Scott
.

[AmyC]

Thank you so much, Scott! This site and the responses have been such a Godsend. I will be looking for your post!

[Scott1974]

Amy,
This link may not work. The article is on medscape but you have to have a login to get to it. I have tried several times and sometimes I can access it without a login.anyway here is the link http://www.medscape.com/viewarticle/458851_2
If that doesn't work go to google and copy and paste the following. "Pure Teratoma of the Testicle" without the quotes. It should be the first thing to pop up. This article is about a 20 year old patient. This was the only actual case study I found that was pure mature teratoma.

Hope this helps. If you can't access it let me know and I'll get it to you via another method.
Scott

[Stavros]

Hi, I cannot stress the second read on that path report myself. My I/O back in March of 09' revealed 90 percent Mature teratoma and being that I had a 10 cm tumor in my retroperitoneal lymph nodes and my local oncs who did the I/O offered to just go in and take out the tumor surgically without chemo. Thank god I consulted with Sloan and they found a 10% small focus of seminoma the second time around which led me straight to chemo instead and the RPLND later. Surgery alone would not have likely helped me. That much teratoma is rare and when so much of it is involved a second read makes all the difference, especially in your case.

All the best and a speedy recovery.

[Scott1974]

Stavros,
I couldn't agree more about the second opinion on the path report. Especially in your case where it had definitely metastasized.

Hopefully in Amy's son's case it will be an accurate path report. As pure mature teratoma tends to just grow and not spread, although it can still spread. If there were no lesions found at the tumor site than that would be a good sign that it hasn't spread. The article linked to below has pure teratoma at a 10-15% relapse rate and considered low risk as apposed to the standard 30% chance of relapse for most NGCT.

Amy tell you son we will be praying for him and truly do understand the decisions in front of both of you. No matter what you options are in the coming weeks it will be a rollercoaster ride.

Scott

[Karen]

Hi Amy, I just want to welcome you. Please do get the second read on the path and let us know how it turns out. The tumor was relatively small and no invasion is definately a good thing.

[AmyC]

Thank you so much for all the information and encouraging posts! I cannot tell you how thankful we are that you all are willing to share the wisdom and information you have learned along this journey. We certainly do not feel as isolated and are starting to deal with the long process of wating. Thank you, Scott, for the link to the article and for the prayers. It felt so good to read someting...anything...and it was very helpful and I printed it off to go in Jacob's file. We are going to Strong in Rochester to see Dr. Edward Messing for a 2nd opinion on March 11th. I will post an update...

[dadmo]

Amy, great job being your sons advocate, our boys often won't do that for themselves. It looks like another momma tiger joined the forum.

[veryworriedmom]

Dear Amy

I know you have already received good advice from the other members. Im sorry you had to join this forum , you will find its a wonderful place for support for both you and Jake. The process from diagnosis to treatment and beyond can be overwhelming and stressful. Please know that there is a caregivers part of this forum that is available to you for any support you may need or just to vent. Take care of yourself too. Marion

[AmyC]

Well, we are back from our appointment to see Dr. Messing. He was very informative and really filled in the blanks as far as what this tumor is and what it might do. He gave us 2 options: the survailance route which we already are all scheduled for and the RPLND route. I know that in "normal" TC, the RPLND can be used for staging purposes and for helping determine what course of chemo or radiation to use but in our case, Teratomas do not respond to chemo or radiation so I am wondering what purpose the RPLND would serve other that knowing whether or not the cancer has spread. Does the Teratoma type cancers always go throught the lymph nodes or can it bypass them? My son is leaning towards the RPLND because he is scared and wants to know and I am not sure that that is reason enough to go through this surgery. From what I have read, no one in their right mind would have this surgery unless it was absolutley necessary and that is what I am trying to figure out. The statisitics he gave us were 20-25% chance of a reoccurrance and if it did reoccur 50% of the time it would be a teratomas tumor (which will not resond to chemo)and 50% of the time it would be some combination of a 3 germ cell TC in which chemo would be on the table. There was a 1% chance that a freaky cancer from the original teratoma could grow in his lymph nodes...like if the original teratoma was comprised of intestinal cells he could get colon cancer in his lymph nodes. Another issue is time. He had the I/O on February 5th...how long after the initial surgery is the RPLND taken off the table? Any help you can give us would be truley appreciated! We really need some help and any information you can give us. Thanks!