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  • Diagnosed Yesterday, June 30

    Hi everyone,

    Just diagnosed yesterday, June 30. I am 31 and recently had my fourth kid (a son born May 23). Before he was born, I decided with my wife that I would have a vasectomy following his birth. Also, a few weeks before my son was born I noticed a lump on my left testicle that was close to my epididymis and was painful if I squeezed it. I went to the urologist on June 20 for the vasectomy consult and to have him examine the lump.

    At the appointment, he was concerned about the lump and scheduled an ultrasound for June 30 (yesterday). Two hours after the scan, the urologist called me and gave me the news - the lump was a tumor. In fact, he said there were multiple "masses" on the testicle and that I would need to have my left testicle removed.

    I spent most of yesterday scheduling appointments. I have a blood work-up scheduled for July 5, a CT scan scheduled for July 10, and a consultation with my urologist on July 12. The only missing ingredient is the actual surgery to remove the testicle.

    Also, apart from (or maybe related to) the testicular lump, I have a pointed pain in my mid back, right on my spine. It hurts to a firm touch and sometimes is painful depending on my movements.

    Considering the above, my three initial questions are as follows:

    1. Is having multiple masses on one testicle instead of just one an extra cause for concern?

    2. How soon should I expect to have the surgery? I'm nervous that it has not yet been scheduled. I prefer to get the testicle out ASAP as it is literally and figuratively weighing me down. Should I expect to have it removed prior to my urology consultation on July 12?

    3. Is thoracic spine pain a symptom of testicular cancer or might it be something else (i.e., a herniated disc)? Further, if there is something on my spine, will it be picked up on the CT scan?

    Thanks everyone. I don't expect to get all the answers but want to be sure I am asking the right questions and scheduling the right appointments.

    Happy Fourth to y'all.
    06/30/17: Diagnosed with TC
    07/03/17: Formal ultrasound results showing five masses on left testicle, largest at 1.6 cm
    07/06/17: Initial blood panel shows tumor marker levels normal. AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L
    07/10/17: CT scan with clear results. No metastases in pelvis, abdomen, or pelvis.
    07/11/17: Left I/O performed with no complications.

  • #2
    I had a pain in my lower back,it's one of the symptoms.I went to surgery six days after ultrasound and tumor markers.Good luck and congrats for your fourth kid,just be positive.
    Pre/o markers - HCG 1332, AFP 30, LDH 235
    pT1 (60% teratoma, 39% embyrional, 1% chorio)
    Post-op markers - HCG 1.2, AFP 2.3, LDH 379
    2XBEP

    Comment


    • #3
      Hi Sully. I'm only about a month ahead of you on this learning curve, so can't offer you much for answers. My experience was quite a bit different ,very rushed. I had my surgery the day after my initial meeting with the urologist. I had already had the ultrasound, and it only took the urologist about 2 minutes to tell me it was coming out. I figured I'd be in for a bit of a wait with regard to schedule, and he said no, clear your calendar, this is happening tomorrow. I wish I could offer some comforting thoughts but like you, I would be concerned about the back pain, it may well be related. Take that with some salt, This whole experience has turned me into an anxious mess and hypochondriac.
      Good luck, and enjoy the holiday and that new boy!

      Comment


      • #4
        Hi Sully, based on my experience, the orchiectomy should take place asap. In my case, similar to 1skinnyj, it was right the day after the US and the initial diagnosis. I still remember the urologist telling me that this has to be taken out asap since TC can be spreading very quickly. I would put some pressure on your doctors and try to have the surgery rather soon. As for the back pain, it can be related but it can also have nothing to do with it. The CT scan will clarify this. All the best

        Comment


        • #5
          SULLY~ first congrats on your new son. Sorry you are posting here, but everyone is great. I will say that you will not really know what kind tumors, size until pathology comes back. But it is not uncommon for more than one kind of tumor for TC on a testicle. The blood work and scans will be key.
          I can only speak from my son's experience, but they scheduled the Orchietcomy for the day after his ultrasound. Maybe see about getting the CT Scan moved up- call tomorrow if the office is open. The Orchietcomy should be scheduled as well!!! Yes, the back pain can be related, but it could simply be back pain. I will say that once the orchietcomy, and other tests are done, there might be some waiting depending on the results before tx starts.
          17 year old son Grant dx 12/21/16
          pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
          pre/o CT Scan 12/22/16 normal
          r/o 12/22/16
          Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
          PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

          -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
          2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
          BEP x 3 1/27/17
          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.

          Comment


          • #6
            Thanks for the insight everyone. This is an awesome place for information and support. I am going to push my doctor tomorrow to get the surgery completed ASAP. It's been tough to schedule around the holiday. I'll let you all know what I find out.
            06/30/17: Diagnosed with TC
            07/03/17: Formal ultrasound results showing five masses on left testicle, largest at 1.6 cm
            07/06/17: Initial blood panel shows tumor marker levels normal. AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L
            07/10/17: CT scan with clear results. No metastases in pelvis, abdomen, or pelvis.
            07/11/17: Left I/O performed with no complications.

            Comment


            • #7
              I got my orchiectomy within 1 week of positive ultrasound.

              Ask to get testosterone checked prior to orchiectomy. This is an overlooked thing before getting the orchiectomy. After the acute treatment of the tumor(s) are taken care of you will need to address your testosterone level and having baseline is useful.

              I think I heard this on the forum or someplace: "my cancer doesn't take a holiday" --> good comeback line for anyone pushing you around the holiday.

              Consider to also get an oncologist appt now.

              Not a doctor, but based on my reading:

              If the orchiectomy results in TC confirmation, based on your age (same as me BTW) you may more likely have a non-seminoma germ cell tumor as opposed to seminoma. Based on the tumor markers, orchiectomy pathology and CT you may fall into a couple categories:

              1. Stage 1, no spread to lymph nodes (typically in the retroperitoneum)
              2. Stage 2/3, spread to lymph nodes and beyond

              With Stage 1 you may do active surveillance, 1xBEP or in some cases RPLND (if experienced surgeon is available)
              With Stage 2/3 you will likely have to do 3xBEP (or alternatively 4xEP) and/or RPLND.

              Pain in the mid-back COULD (or it could be simple back pain) be related to spread to lymph nodes which have enlarged. The lymph nodes are in the retroperitoneum in the rear of the abdomen. Does the pain wax and wane with activity? Does taking a therapeutic dose of ibuprofen alleviate it?

              Keep in mind that overall, with treatment, TC has one of the highest cure rates of all cancers.

              This is a good readable guideline:
              https://uroweb.org/wp-content/upload...Cancer_LR1.pdf

              PS. Suggest to go to the profile menu and add your details there so the signature will show your diagnosis history. This will help people on the forum offer advice quickly.
              Last edited by mcintoda; 07-03-17, 01:11 AM.
              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


              • #8
                sullyATL, you a pilot ? So am I, still working on getting my medical back after stage 2A

                I am surprised they are waiting this long. Below is a photo of the NCCN guidelines for testicular cancer work up. Here is a link to the PDF for the guidelines, https://www.nccn.org/professionals/p...testicular.pdf . you will have to make an account but it is free. This will help you keep track of what your doctor should be doing.

                Regarding your questions. I am not a doctor, just from my experience.

                1.The concern with multiple masses is the pathological make up and determining if you are seminoma or non-seminoma. If you have any masses that are non-seminoma then you will be treated as such even if there are seminoma masses.

                2. Yes surgery as soon as possible. Testicular cancer cells grow fast. They double every month, get it out.

                ​3. Yes, back pain is a symptom of metastatic disease , but you don't know anything until the CT. The CT should be read by someone with TC experience too. My CT report was normal at my primary hospital in SW Virginia, but then when the docs at Memorial Sloan Kettering looked at it , they saw a very obvious enlarged node.
                Dx March 21 2016
                Right Orchiectomy march 25 2016
                60% embryonal 35% yolk sac 5% seminoma
                positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
                Started 4xEP april 2016
                Finished chemo July 2016, markers normal, complete radiographic remission
                RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
                Surveillance

                Comment


                • #9
                  Good morning everyone. I received the formal results from my ultrasound yesterday. A total of five masses found on the left testicle as follows:

                  10 x 8 x 15 mm hypoechoic midpole mass anteriorly
                  6 x 6 x 8 mm hypoechoic central mid pole mass
                  3 x 3 x 3 mm hypoechoic midpole mass
                  16 x 16 x 16 mm hypoechoic lower pole mass
                  12 x 6 x 8 mm hypoechoic lower pole mass

                  Anything to glean from the amount or size of the masses? I am awaiting results from my initial blood panel and will post those as soon as they become available.

                  I am not scheduled for surgery until July 18, which is frustrating. I am pushing them to get it moved up and am exploring alternatives at other treatment facilities.

                  Thanks again for everyone's support and insight!

                  06/30/17: Diagnosed with TC
                  07/03/17: Formal ultrasound results showing five masses on left testicle, largest at 1.6 cm
                  07/06/17: Initial blood panel shows tumor marker levels normal. AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L
                  07/10/17: CT scan with clear results. No metastases in pelvis, abdomen, or pelvis.
                  07/11/17: Left I/O performed with no complications.

                  Comment


                  • #10
                    Honestly, the u/s is to show that testicle has a solid tumor leading to almost certainity that it is TC. The orchietcomy is needed since the pathology from the orchietcomy and tumor markers really dicate treatment. Keep trying to move the surgery- go to another urologist if needed- cancer does not care about holidays. Keep us updated.

                    Again, my son was in a Pedi Urologist's office at 4:15 pm on 12/21, u/s showed "very large solid right testicular mass", and he was in operating room on 12/22 around 12:30 pm after CT Scans. Now is pathlogy showed a pretty large mass.
                    Last edited by Trekga; 07-04-17, 10:22 AM.
                    17 year old son Grant dx 12/21/16
                    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                    pre/o CT Scan 12/22/16 normal
                    r/o 12/22/16
                    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                    BEP x 3 1/27/17
                    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.

                    Comment


                    • #11
                      I wouldn't be overly concerned with the number of tumors as the CT scan, blood markers and then pathology details will drive your treatment decisions. However, if you are in ATL then there is no reason that it should take that long to schedule a CT scan and surgery. I would get my tumor markers done tomorrow and get my own results (the next day) is reasonable. I would insist that a CT scan be done by Friday (just so you can "have" a deadline to give them) and that you want to be in surgery well before the 18th.

                      Now, will waiting until the 18th affect your outcomes? Highly unlikely, but with our tumor markers and CT results it is hard to tell. If your markers are extremely elevated then expediting surgery may be required. I would push my doctor or find a different one if needed. If your markers are normal, that helps justify the delay but I would want a CT scan too to justify a delay before I waited until the 18th for surgery. Again, it would be rare that waiting a few weeks for the orchiectomy would affect your outcomes, but the labs and imaging can help calm your nerves a bit that that is indeed the case.

                      I looked at my dates and this was 11 years ago:
                      6/6: Primary Care Appointment
                      6/12: US done
                      6/14: Primary referral to urologist as US results back. Urologist appointment scheduled via office for 6/21. Urologist called after hours and left voicemail to come in whenever the next day.
                      6/15: Urologist appointment. Walked over to hospital to get tumor markers & chest X-ray
                      6/20: CTs done
                      6/26: Orchiectomy
                      6/29: Went to Medical Records to get my pathology report and diagnosis.
                      6/30: Post-op urology appointment

                      I am assuming that you did not have the vasectomy?

                      I am also not sure why you would need a pre-op appointment if you just saw the urologist. They can order any labs as an outpatient. You should have a chest X-ray at some point (I would do it before the CT and if there is anything on the chest X-ray then they can do a Chest CT in concert with the abdominal CT).

                      The care you are receiving seems a bit sluggish considering it is via a urologist.

                      Mike

                      Oct. 2005 felt lump but waited over 7 months.
                      06.15.06 "You have Cancer"
                      06.26.06 Left I/O
                      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                      06.30.06 It's Official - Stage I Seminoma
                      Surveillance...
                      Founded the Testicular Cancer Society
                      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                      Comment


                      • #12
                        I received what my urologist said was "good news" yesterday. Of course, he qualified the comment by stating we will not have firm answers until the CT scan, chest x-ray, surgery, and pathology report are complete.

                        I completed by pre-op blood panel and everything, including the tumor markers, came back normal. For the record, my tumor marker were AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L.

                        I have seen that a number of people on the site had normal blood work but still were staged at levels 1 or 2. To your knowledge, are normal tumor markers indicative of one type of cancer or another?
                        06/30/17: Diagnosed with TC
                        07/03/17: Formal ultrasound results showing five masses on left testicle, largest at 1.6 cm
                        07/06/17: Initial blood panel shows tumor marker levels normal. AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L
                        07/10/17: CT scan with clear results. No metastases in pelvis, abdomen, or pelvis.
                        07/11/17: Left I/O performed with no complications.

                        Comment


                        • #13
                          If it is a seminoma then clean blood work is not an indicator.
                          My labs came back clear but biopsy confirmed seminoma in the lymph nodes.

                          As I have learned, clear labs are only a good indicator when they are going up or coming down.

                          Comment


                          • #14
                            Hi Sully, I was recently diagnosed and had 3 tumors in my left testicle. This freaked me out too. After my I/O my pathology report came back as classical seminoma. I think it may be more common with Seminoma to be multi focal but still rare. It's frustrating to get the doctors moving but maybe you can move your surgery up like Mike said. Time is crucial to make sure it can stay confined to the testis in my opinion. Some cancers grow quick and others grow slow.

                            Some things I've learned from my experience here. Rest assured, you'll be ok no matter what. This is what everybody says and when you browse this forum you'll see that things will be ok. It really comes down to how quick you caught it. Once your testicle is out and you get your CT you'll definitely have a blueprint your doctor will look over.

                            The one thing I'd suggest is making sure you're working with a urologist who knows what they're talking about and not rush you into anything hastily. After my surgery and pathology my urologist tried to rush me into radiation without going over anything.

                            Mike here sent me recommendations for two doctors in my area and thank goodness he did. My new DR took his time, answered my questions and I could tell right away he has treated testicular cancer and showed a confidence that felt lacking in my other doctor. It's always good to get a second opinion and I'm grateful I did. If you too feel like you're in that same boat it wouldn't hurt to reach out to another doctor/oncologist for their opinion.

                            If you decide to go that route just make sure you get copies of EVERYTHING. Every CT scan, X ray or other test pertaining to my diagnoses I get a hard copy of. They'll burn the images on CD for you and it's free. I take all the hard copies and give them to my new doctor.

                            This is good to for them to check things which may have been over looked. In my case my new DR saw something on my CT scan imaging which the radiologist didn't see. It is good to have multiple people looking at your case.

                            Good luck to you and keep us posted.
                            Last edited by jmz; 07-07-17, 11:52 AM.
                            April 2017 - Scheduled physical with DR for testicular pain / ultrasound scheduled
                            May 2017 - US shows 3 solid masses 1.2 x 0.7 x 0.7 cm/0.8 x 0.5 x 0.8 cm/ 0.4 x 0.3 x 0.4 cm
                            June 2017 - Left inguinal exploration and left radical orchiectomy. Pathology - Seminoma, classic type and intratubular germ no neoplasia - seminomatous. CT scan shows 2 long nodules (most likely granulomas) and Borderline prominent but non specific mesenteric nodes within the right lower quadrant.
                            July 2017 - 2nd CT scan all clear! Lung nodules stable. Active surveillance 5 years.

                            Comment


                            • #15
                              I had a successful week. The advice here regarding self advocating really paid off. I received a referral to a new urologist and he was able to perform an initial consult, perform a CT scan, and perform the orchiectomy in two days. My recovery from surgery is going well so far. I have been up trying to walk and the worst of the pain seems to have passed.

                              Results wise, I have received positive news in the past few days. My orchiectomy went well, my tumor markers came back normal, and my CT scan came back clear - no metastasis in nodes, lungs, or anywhere else in my chest, abdomen, or pelvis.

                              I am still awaiting pathology results but based on what I've read on the site, it seems I'm likely to be staged at 1A or 1B. Does that seem to be a pretty accurate reading of the data?

                              Thanks again for your help and prayers.
                              06/30/17: Diagnosed with TC
                              07/03/17: Formal ultrasound results showing five masses on left testicle, largest at 1.6 cm
                              07/06/17: Initial blood panel shows tumor marker levels normal. AFP at 3.3 ng/mL, HCG at 3 mIU/mL, LDH at 137 U/L
                              07/10/17: CT scan with clear results. No metastases in pelvis, abdomen, or pelvis.
                              07/11/17: Left I/O performed with no complications.

                              Comment

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