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Frustration with awaiting pathology results

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  • #16
    Your reaction for the most part is a normal reaction. Had i been told it was cancer and had my nut removed to find out it wasnt cancer. I would have lost my **** and someone would have gotten a beat down for being stupid.
    But that was not my case and regardless your reaction was like everyone else for the most part on hearing you have cancer.
    Look at it from a different point of view. You didn't have cancer and have learned a valued life lesson. Educate yourself and question everything. It will take time for you to feel as whole again as you can.
    Moving forward make the experience a positive situation and teach other men and women you meet about the pitfalls of TC cancer, and just how much hearing you have cancer wrecks your life.
    Biggest take away i see for you was it could have been a whole lot worse outcome.
    Last edited by eodtech2001; 09-27-18, 02:52 PM.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #17
      First urologist that checked me on US and found a mass wrote that testicle should be further examined, like I should be opened, testicle should be pulled out and quickly biopsed and if it is cancer than removed, and if it is not, puted back in. When I got to hospital first urologist that checked me at first discarded that idea. He was a younger guy and probably didn't know much, but neither did I. He than called senior specialists and they conviced me that this is not a practice, that there is a risk of cancer spreading during the biopsy, and also that quick pathology is not vey reliable. They said that there is a 95% chance that it is malignant cancer and radical orchidectomy is only solution, and 5% is acceptable risk. And yes, it was a cancer, but if it was not, I wouldn't have to be under surveillance, worried about the relapse, and worried about possibility of second TC. So, both of you cancer-free and still orchidectomied guys should be considered very, very lucky.
      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
      Waiting...

      Comment


      • #18
        Lets not forget what Crispy actually said:

        The report from the original hospital appears to show a benign tumor
        A benign tumor does not always stay benign. What type of benign tumor? what are the risks if you leave a testicle in with a known (benign) tumor? It seems to me that it is too early to jump to the conclusion that the testicle was better left intact.
        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
        7/7/15: bHCG 56, AFP 42, LDH 322
        7/13/15 - 9/18/15: 4xEP
        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
        4/20/16: RPLND @ IU - teratoma only!
        9/27/2018 all clears up to this date!

        Comment


        • #19
          Originally posted by biwi View Post
          A benign tumor does not always stay benign. What type of benign tumor? what are the risks if you leave a testicle in with a known (benign) tumor? It seems to me that it is too early to jump to the conclusion that the testicle was better left intact.
          A good question. I spent a little time on the phone this morning trying to get ahold of a copy of the report, but without success. I may drive down to the hospital tomorrow to try to pick it up. The information about it being benign came from a telephone call with my urologist's office. The urologist apparently reviewed the report and relayed that info to the front desk guy, who then relayed it to me.

          I also spoke with Johns Hopkins this morning, who said that eight slides and a block (?) were handed over to a pathologist yesterday afternoon at about 4:30 PM. The person on the phone suggested it could be a week or two before the pathologist finishes, but I had the impression (I no longer recall where I read this) that the second opinion wouldn't take as long. We shall see.
          September 2018 - Right I/O
          October 2018 - Pathology: testicular fibrothecoma (benign)

          Comment


          • #20
            I'm sorry you feel like a fraud, you shouldn't you've been through exactly the same worry we all have. When mine was starting to take too long i started to assume that it must have been an infection or benign tumour. when it wasn't i had to readjust the other way you have, im really happy that you don't cancer, no one would wish otherwise. hospitals have a care of duty to remove anything that could pottentially be cancer. once again really happy for you and hope you get the same news from JH.

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            • #21
              For anyone still following along at home, I was able to pick up a copy of the initial pathology report today. I'm not sure what this all means, but the mass is described as a "spindle cell lesion" with the following comment:

              "This case will be sent out for an extramural expert consultation at the Johns Hopkins Department of Pathology the results of which will be reported in an addendum.

              The tumor cells are bland and focally positive for SMA, and negative for desmin, CD34, S100, CD11 7, pancytokeratin, and inhibin."

              That's it. I Googled far enough to see that spindle cell lesions can sometimes be hard to diagnose between benign and malignant, but I take it the rest of the info points to it being benign?
              September 2018 - Right I/O
              October 2018 - Pathology: testicular fibrothecoma (benign)

              Comment


              • #22
                Was this inside the testis or outside?
                Age 31 - Portland, OR
                01NOV16- Pain in right testicle, palpable mass
                13NOV16- R I/O. Markers normal
                27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                06DEC16 - CT scan clear
                09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                03JAN17- Ended 1xBEP; start surveillance
                18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                Comment


                • #23
                  Originally posted by mcintoda View Post
                  Was this inside the testis or outside?
                  Inside. During my initial urology exam, the doctor told me that with that location and the vascularity, it's pretty much always malignant. He said he'd only seen one case personally where it turned out not to be.
                  September 2018 - Right I/O
                  October 2018 - Pathology: testicular fibrothecoma (benign)

                  Comment


                  • #24
                    I also had to wait longer than expected for my pathology results. Initially, I had my post-op visit scheduled for two weeks after my orchiectomy but was called to reschedule for a week later because my pathology results weren't ready.

                    My pathology report was quite long (about five pages total) and my final pathological diagnosis is an unclassified sex cord stromal tumor with spindle cells.

                    With the limited amount of information you've provided, you might also have a sex cord stromal tumor based on the presence of spindal cells. I'm not a pathologist by any means, just somebody who has had to read up quickly on my own diagnosis, so I cannot say if the immunohistochemistry you've provided is indicative of a sex cord stromal tumor or not.

                    "Spindle cell neoplasms arising in the testis are uncommon; most cases belong to the category of gonadal stromal tumors, and the presence of distinctive clinical and pathological features usually lead to a definitive diagnosis." (http://journals.sagepub.com/doi/abs/...urnalCode=ijsa)

                    In the case of testicular masses with vascularity, it is never a "mistake" to perform an orchiectomy even if the mass turns out to be benign.

                    With testicular sex cord stromal tumors in adults, 80% are benign and 20% are malignant but that cannot be determined without removing the mass. They present the same on ultrasound as malignant germ cell tumors, and often exhibit similar features when reviewing them for pathology. Even benign tumors caught at an early stage with no evidence of metastasis can exhibit risk factors for malignancy.

                    Sex cord stromal tumors do not respond well to chemotherapy and radiation, so even if ultimately benign opting to not perform an orchiectomy is not a risk anybody should be taking.

                    My own pathology report says that "based on the morphology, the differential diagnosis could include a mixed germ cell and sex cord stromal tumor, an unusual pure germ cell tumor and a pure sex cord stromal tumor, amongst others." It is only the immunohistochemistry that led the pathologist to their final diagnosis, and that is after consulting with multiple pathologists (I am being treated at a major research and teaching hospital).

                    When you get your final pathology report, please post it here and if I can offer any help and advice I'll do so. I'm just beginning to navigate this myself, but already found some helpful resources.

                    Comment


                    • #25
                      Originally posted by Crispy View Post
                      The tumor cells are bland and focally positive for SMA, and negative for desmin, CD34, S100, CD11 7, pancytokeratin, and inhibin."

                      That's it. I Googled far enough to see that spindle cell lesions can sometimes be hard to diagnose between benign and malignant, but I take it the rest of the info points to it being benign?
                      I don't think that this information is enough to determine malignancy. If this is a sex cord stromal tumor, the risk factors for metastatic disease are as follows:

                      > 3 mitoses per HPF (I've also seen the number of greater than 5 mitoses per 10 HPF in another study)
                      Positive margins
                      Rete testis invasion
                      LVI
                      Cellular atypia
                      Necrosis
                      Tumor diameter >5 cm

                      Comment


                      • #26
                        The second page contains some descriptions of the "contents" of my tissue that might be helpful. Regarding the tumor itself, it says:

                        Originally posted by Surgical Pathology Report
                        Cut surface: Tan-white, stringy parenchyma with a 0.9 x 0.7 x 0.7 cm tan-white, circumscribed mass which appears confined to the testicle, measures 0.5 cm from the epididymis, appears confined to the testicle.
                        It also notes that the epididymis "appears elongated and enlarged, no lesion grossly identified." And it notes that the spermatic cord "exhibit[s] an unremarkable cut surface."

                        I was also expecting the report to be much longer than this. I assume (or, at least, I hope) that the information from Johns Hopkins will be much more detailed.

                        I have my surgical follow-up with the urologist on Monday. I plan to ask him to go over this report in detail with me and explain what about it tells him that it's benign. Not that I doubt him, because I don't assume a doctor would say that to a patient flippantly. But I want to understand as much as I possibly can about this experience.

                        By the way, thanks to all of you who continue to read and engage through this process.
                        September 2018 - Right I/O
                        October 2018 - Pathology: testicular fibrothecoma (benign)

                        Comment


                        • #27
                          These tumors are very rare, so there isn't well established criteria to determine malignant potential.

                          There just haven't been enough well-documented cases to establish clear and definitive criteria for malignant potential, but I have posted some of the most common proposed ones above.

                          If your tumor hasn't spread outside of testicle, has clear margins, no lymphovascular invasion, and your tumor's pathology has few of the risk factors that I posted above than it is fair to say it is likely benign.

                          If after speaking with your urologist the final diagnosis for your tumor is a stromal tumor, I recommend you get in touch with the International Ovarian and Testicular Stromal Tumor Registry (https://www.otstregistry.org). They will collaborate with your doctor and collect your medical records, pathology specimens, etc.

                          (I'm writing this under the assumption that because of the presence of spindle cells, you are likely dealing with a sex cord stromal tumor.)

                          Comment


                          • #28
                            Interim update. I just had a phone call with the pathologist working on my tissue at Johns Hopkins. He said that it looks like either a PEComa or a leiomyoma. Because there is still some uncertainty from the slides they're reviewing, and because of what he described as a "very rare presentation" of the tumor either way, he's requested the actual material from the operating hospital so that JH can evaluate more thoroughly. He thinks I should have the final report by early next week.
                            Last edited by Crispy; 10-03-18, 02:37 PM.
                            September 2018 - Right I/O
                            October 2018 - Pathology: testicular fibrothecoma (benign)

                            Comment


                            • #29
                              The final pathology report came back today. I haven't had a chance to talk to my urologist about it yet (that should happen tomorrow). Here is the addendum:

                              Originally posted by Pathology Report addendum
                              Right Testicle and Cord
                              - Testicular Fibrothecoma.
                              - Background Testis With Spermatogenesis Appropriate For Age.
                              - See Note.

                              Note:

                              Submitted immunostains show that the lesions focally positive for SMA and negative for Desmin, Inhibin, S100, CD117 and Pancytokeratin. CD34 highlights the tumor. Associated vasculature but not tumor cells itself. Immunostains performed at Johns Hopkins Hospital show that the lesion is focally positive for SF1 and negative for Cathepsin and ER.
                              As with others who have posted here about reviews at Johns Hopkins, my report was signed by Dr. Epstein.

                              My (admittedly limited) understanding from some Google searching is that testicular fibrothecoma is never malignant. It's not clear to me whether this conclusion is in line with or contradictory to what the person I spoke to on the phone last week said about PEComa or leiomyoma—there's no mention of either term on this report. Don't know if I'll wind up getting clarification on that, but it sounds like I'm going to be in the clear regardless.

                              September 2018 - Right I/O
                              October 2018 - Pathology: testicular fibrothecoma (benign)

                              Comment


                              • #30
                                Must be rare results. Glad it seems to be a good result to have in the scheme of things.
                                Son Grant
                                dx 12/21/16 at age 17

                                BEP x3
                                Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                                2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                                Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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