Sertoli cell tumor (No surveillance plan?)

[swc]

Hi all, I will briefly list out the activities in the past few weeks.

20/5/19 Found lump on left testicle
27/5/19 Ultrasound found intratesticular mass with internal vascularity (doppler colour) 7mm x 6mm x 6mm.
04/6/19 All blood markers normal . Second ultrasound showed intratesticular mass 6.2mm x 6.8mm x 6.2mm (did not grow).
12/6/19 Performed left orchiectomy. CT scan chest/abdo/pelvic all normal (clear).
20/6/19 Pathology report indicates sertoli cell tumor. Urologist told me it is not cancerous and did not require further treatment. Not even CT scan. He did not refer me to an oncologist. Just need an ultrasound in 6 months time.

1) So I am just wondering if I need to get second opinion from another urologist to confirm the tumor is indeed benign. The urologist said the chance of it coming back is rather small, where the chances getting involved in a traffic accident will be much greater than this. I understand benign tumor usually do not spread.
2) Therefore, does that mean orchiectomy is the only thing I need? (Urologist did not even give me a active surveillance plan such as test of blood marker/CT scan).

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20/05/19 Found lump on left testicle.
27/05/19 Ultrasound confirmed intratesticular mass.
12/06/19 Left I/O. CT and blood markers all clear.
20/06/19 Pathology showed Sertoli Cell Tumar (benign?)
Now: Should i get second opinion from another urologist or an oncologist? Given that current urologist did not provide active surveillance plan.

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[Newme2017]

Hi SWC,

I am guessing there were no malignant features listed/found in your pathology report? ( LVI, nuclear atypia, increased mitotic rate, necrosis, in addition to a size greater than 5 cm, which you obviously didn't have.) Sertoli cell tumors are so rare, it may be a good idea to get a second opinion to begin with, as an overabundance of caution. As you have probably read by now, Sertoli cell tumors are benign roughly 90% of the time, and without any malignant features you will find that no surveillance is the typical course of action, after a clear post op CT scan. I personally did have a CT scan 18 months on down the road, but that was mainly due to post-op complications. (I enjoyed the peace of mind that came with a clear second CT scan.) Like in your case, once my initial scans came back clear my doctor was pretty sure my tumor was benign.

Hope that helps.

Best,
Mark

[swc]

Hi Mark,

My doctor did not go through the pathology report with me. In fact, he just stated that this is a benign sertoli tumor. I even forgot to ask him why is the tumor classified as sertoli cell tumor (for better understanding) and how sure was he about this. Did you request for your pathology report? I just do not want to be misdiagnosed. Was your blood marker level normal before orchiectomy as well? It is good to hear that you are doing well.

Regards,
swc

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20/05/19 Found lump on left testicle.
27/05/19 Ultrasound confirmed intratesticular mass.
12/06/19 Left I/O. CT and blood markers all clear.
20/06/19 Pathology showed Sertoli Cell Tumar (benign?)
Now: Should i get second opinion from another urologist or an oncologist? Given that current urologist did not provide active surveillance plan.

---

[Newme2017]

Hi SWC,

You can go to your urologist's office and request a copy of your pathology report, its yours after all. I would also request a copy of your ct scan report. Once you get a copy of your pathology report, feel free to post any questions or concerns.

Best,
Mark

[Mike]

I'm not sure where you are being treated or how much experience they have with sertoli tumors but as mentioned,I would get a copy of my pathology report to see if they addressed the high risk features and to see where, if any place, they sent the tumor for secondary evaluation. You could always ask for a secondary evaluation, the pathology team at Indiana University for example would be a great place and their contact information is on our friends at the TCRC site at: http://thetcrc.org/experts.html

Having a copy of the CT results would be advisable too. Sertoli tumors should not elevate the tumor markers so they are a bit useless in follow up but CT imaging may be advised, at least in the short term to assure that there was no spread, especially if it had any high risk features.

Mike

[sayhey]

Fellow stromal cell tumor patient here.

The good news is that more likely than not, you are the former owner of a likely benign tumor.

That being said, I think most urologists and oncologists specializing in the treatment of testicular cancer would suggest at least one CT scan following this diagnosis. These tumors are unlikely to produce blood markers, so while these are also recommended often as part of surveillance it's not as important as the initial CT scan and often a follow-up.

As everybody here has said, your pathology report is very important to have in this situation. If you aren't at a hospital or institution with a high-volume of testicular cancers, or a teaching institution, I would recommend you get your pathology done again just to be sure.

You can also contact the International Ovarian and Testicular Stromal Tumor Registry. While they can't and won't act as part of your treatment team, they can offer some general guidance as well as collect your pathology slides and go over them again as part of their registry to expand knowledge of these tumors.

https://www.otstregistry.org/for-patients-a-families/registry-diagnoses/testicular-stromal-tumors/

I can also share some of the research and guidelines I've complied on the topic if you would be interested.

[swc]

Hi All,

Thanks for replying the post.

Thanks for the valuable advice guys. I will call up and get a copy of my pathology and CT report soon. Unfortunately, sertoli is so rare even in a big population country like the United States. I am from Australia and I do not think they have much experience on this. Therefore, I do not even know which lab is the best for second evaluation. Regarding the CT scan, I have done one CT scan a week before my orchiectomy. Therefore, another CT scan after surgery might not be needed, I guess.

Sayhey, it would be great if you could share your compiled research and guideline.

The fact that I do not even know which hospital/institution with experiences in sertoli cell tumor for second evaluation is really worrying me.

[Newme2017]

Hi swc,

The link Mike provided has several Australians on the list, http://thetcrc.org/experts.html#australia . Perhaps the Australian experts can suggest/refer other labs/urologists near you, granted Indiana U (as mentioned) has the best program in the world, if that would be a possibility.

@sayhey, good to see you post, I hope all is well!

Best,
Mark

[sayhey]

The OTST Registry that I provided you a link to earlier is international, and they may be able to provide you with information regarding a specialist in Australia with expertise in stromal sex cord tumors since that is their area of expertise. They would also request your pathology slides to do their own analysis, and may be able to provide you with confirmation of the results.

One of the authors of a case report on a testicular unclassified sex cord stromal tumor is a group of Australian urologists, with the contact author being a James Sewell. His correspondence email is listed as [email protected]. I'd reach out to him.

For reference, the risk factors for a tumor harboring metastatic disease are as follows: greater than 3 mitoses per high powered field, positive margins, rete testes invasion, lymphovascular invason, cellular atypia, necrosis, and a diameter of greater than 5 cm at the largest dimension for the tumor itself.

If you have 0 of these risk factors, you likely don't need any follow-up. From what I was told, these slow growing tumors anyway, so there really isn't a rush either way.

If your CT scan was clear before surgery, and your doctor says that the tumor was benign than more likely than you are you free and clear.

These are rare tumors, so there isn't enough data to suggest a universal surveillance schedule; if surveillance is needed at all in cases such as yours.

[swc]

Hi All,
Personally, I am undecided for second opinion as the line 'There are no features of malignancy' (seems that I have 0 of those risk factors aforementioned) is kind of reassuring and I am rather tight financially (student).
Below is my pathology report. It will be great to share your opinion on it.

Macroscopic findings: There is a moderately firm, white tumour 7 x 7 mm, involving the upper pole. The tumour macroscopically abuts tunica albuginea. The epididymis is clear of tumour. The tumour is confined to the testis. The remaining parenchyma is unremarkable, no other macroscopic lesion. Blocks: A: margins. B-D: composite TS. E: testis, radial margin. P5 (sl)

MICROSCOPIC: Sections from the testis show a small well circumscribed but unencapsulated nodule composed of nests and cords of vaguely spindled tumour cells with bland nuclear features, set within a collagenous stroma. No calcification is seen. There is no mitotic activity, haemorrhage, necrosis or lymphovascular invasion. The lesion is confined to the testicular parenchyma and clear of the resection margins. The adjacent testis is unremarkable with no evidence of germ cell neoplasia in-situ. Active spermatogenesis is present. Immunostaining shows the tumour cells to be positive for AE1/AE3. Tumour cells are negative for OCT3/4, PLAP, Melan A, Synaptophysin and Chromogranin. The features favour a sex-cord stromal tumour such as a sertoli cell tumour.

Further immunostaining is in progress with a final report to follow. PROVISIONAL CONCLUSION: Left testis -- Features favouring a sex-cord stromal tumour of the testis; 7 mm in diameter; clear of resection margins. Further immunohistochemistry is in progress with a final report to follow.

The tumour cells show weak diffuse positive staining for Inhibin and negative staining for Calretinin. Overall, the features are in keeping with a Sertoli cell tumour. There are no features of malignancy. FINAL CONCLUSION: Left testis -- Sertoli cell tumour; 7 mm in diameter; clear of resection margins.

[sayhey]

I'd take the pathology report as great news. There really isn't a well established surveillance for these tumors, and without any of the risk factors I would say you are probably good to go. Some doctors might recommend another CT scan, others won't. Continue to check your other testicle and go to the doctor with any concerns you have in the future.

I would still contact the OTST Registry and have your medical file and pathology samples forwarded to them for review and to help them in their research work on these tumors.