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30 y/o with 2 lumps on left testicle, testicle has also shrunk...

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  • #31
    Lymphovascular invasion with nonseminoma is a prognostic factor for suture relapse if you are stage I. As is the predominance of embryonal cell carcinoma. Lymphovascular invasion with nonseminoma is considered more of a higher-risk for relapse with rates usually quoted around 50%.

    If it were me, I would ask for the make up percentages of the tumor from the pathology report as well as the dates and levels of the tumor markers so that I could keep an eye on them myself. If the CT is negative and the markers are dropping at any rate then it is not uncommon to wait even 6 weeks after the orchiectomy to have the tumor markers return to normal.

    Unfortunately, it is still a wait and see situation. At least the levels are not rising, which would indicate the need for full-dose chemotherapy straight away.

    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

    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

    Comment


    • #32
      Unfortunately my tumour marker levels increased last week. They're all high but the HCG is the biggest issue. It was in the 40's before and after the orchiectomy. Now it's gone up to 120 within a week, a few weeks after the op, so they called to advise me that I am being booked in for 3 x cycles of BEP chemotherapy over 9 weeks. However I will need to wait until 27th November as thats the earliest slot they have available, which is also apparently already brought forward as an emergency! I was quite surprised that I would have to wait so long. I guess this is just how the British NHS service works. I had a meeting in the hospital with an oncologist and the specialist nurse, first time I had met them but I will be dealing with them moving forward. They advised me of what was happening, and the oncologist suggested that my CT scan showed no signs of anything so no visible sign of anything inside me, just increased tumour marker levels, but of course enough to warrant chemo. Although I had to step in and mention that the CT scan was done almost 2 months ago now, and he had to re-read the documents to discover that it was actually a while ago and then discussed with the nurse that a new CT scan would need to be done before chemo. If I hadn't mentioned this myself they wouldn't have bothered! However regardless, chemo at this stage is inevitable.

      I was also made aware that the nonseminoma is predominantly embryonal cell carcinoma, of course with vascular invasion. I wasn't given percentages, nor was i given any documentation to take with me with any stats. They couldn't give me an actual 'stage' number either.

      Things are still taking time to sink in. I'll admit that I'm pretty scared of the chemo! I'm worried about what its going to do to me. I've been advised by some not to do it and try cannabis oil instead or gerson therapy. But I'm sceptical. I don't know what to think or do!
      Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

      Follow me and my journey: https://www.instagram.com/daleowendesign/

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      • #33
        Hey pixel, sorry to welcome you to the club. I'm currently in the middle of my bepx3. It affects everyone differently, for me It's really not to bad, some fatigue, feeling kinda crappy, no nausea so far. Hardest weeks are the first of the cycled which are 5 consecutive days, then a few days after you'll feel much better. I work the second and third weeks of the cycle feeling fine. Youngish age(30), and drinking/eating as much as I can seems to help. If you got any questions feel free to contact me, but you'll be just fine, stay posative!

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        • #34
          Originally posted by StaticX View Post
          Hey pixel, sorry to welcome you to the club. I'm currently in the middle of my bepx3. It affects everyone differently, for me It's really not to bad, some fatigue, feeling kinda crappy, no nausea so far. Hardest weeks are the first of the cycled which are 5 consecutive days, then a few days after you'll feel much better. I work the second and third weeks of the cycle feeling fine. Youngish age(30), and drinking/eating as much as I can seems to help. If you got any questions feel free to contact me, but you'll be just fine, stay posative!
          Hey Static, thanks for your comment. Good to know that you're not finding the chemo very taxing so far! Any other side effects that you've noticed? Are you working at the moment too? Will definitely try to stay positive
          Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

          Follow me and my journey: https://www.instagram.com/daleowendesign/

          Comment


          • #35
            Originally posted by Mike View Post
            Lymphovascular invasion with nonseminoma is a prognostic factor for suture relapse if you are stage I. As is the predominance of embryonal cell carcinoma. Lymphovascular invasion with nonseminoma is considered more of a higher-risk for relapse with rates usually quoted around 50%.

            If it were me, I would ask for the make up percentages of the tumor from the pathology report as well as the dates and levels of the tumor markers so that I could keep an eye on them myself. If the CT is negative and the markers are dropping at any rate then it is not uncommon to wait even 6 weeks after the orchiectomy to have the tumor markers return to normal.

            Unfortunately, it is still a wait and see situation. At least the levels are not rising, which would indicate the need for full-dose chemotherapy straight away.

            Mike
            Hey Mike, I'm going to need to ask the doctors for a full pathology report on paper to take home. I'd like to see numbers myself too. When you say relapse rates, would you suggest that there is a chance the cancer will return after 3 x cycles of BEP? How common is this and does it tend to return immediately after?
            Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

            Follow me and my journey: https://www.instagram.com/daleowendesign/

            Comment


            • #36
              PG

              Sorry to hear the markers are still high and have risen slightly. I believe you will be stage 1S unless the new CT shows definite evidence of spread. This is because the only evidence of a continued presence of cancer cells is the fact that your markers are not returning to normal levels as expected.

              The relapse rates Mike quotes are if you were Stage 1a with no sign of spread and opted for surveillance rather than adjuvant chemo. BEP is very very effective against TC and will almost certainly kill all remaining cancer cells. Even with BEP in TC cases being just about the most effective cancer treatment we have against any form of cancer, there are still unfortunately a very few people who will relapse even after BEP. They can then be treated with various second line chemotherapy regimens and / or High Dose Chemo and cures at second line are still very much achievable.

              As for the people who say reject the BEP and go for cannabis oil instead, I would STRONGLY advise you to ignore them. The discovery of the BEP chemotherapy regimen in the 1970ís turned survival rates in TC cases on their head literally overnight. It went from something like 10% surviving for 5 years to near 90% as soon as BEP became standard and has continued to improve from there as more refinements are made to the way TC is treated and survivors are followed up longer term. There are many many proper medical studies that prove it is effective. Donít throw all that away for some unproven benefits of an untested theory about cannabis oil which has little or no supporting scientific studies to prove or disprove it as yet.

              Comment


              • #37
                Thanks for your reply. I'm hoping the CT doesn't show any signs of spreading...

                Thank you for your knowledge and advice on chemo and alternative treatments. Given the success rate of BEP, it seems I would be foolish to turn it down for unproven methods. I've had a think about it, and the side effects aren't a huge bother for me, especially long term. Short term side effects aren't going to be pleasant at all but its temporary. I was also thinking about adding something like CBD oil to the equation as well as chemo, but I'm not sure there will be much need for this. I'm going to just accept that BEP is the best way forward.

                Tomorrow I am going to a separate clinic to bank sperm. Not really sure what to expect with that!
                Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                Follow me and my journey: https://www.instagram.com/daleowendesign/

                Comment


                • #38
                  I have no problem with complimentary therapies as well as BEP (I made some lifestyle changes myself) but please make sure you tell your doc what you are intending to try if that is the way you do decide to go. Some surprisingly mundane things can react with or block the effects of the drugs you get as part of your chemo and you donít want the side effects for no benefit.

                  I hope it all goes well. I was lucky and avoided the need for BEP but there are loads on here who will be able to advise on minimising side effects.

                  Comment


                  • #39
                    Sounds like you have a good plan.

                    Relapse after low volume disease after 3xBEP is rare. Chances are very very good that 3xBEP will be the end of your treatment and story.
                    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


                    • #40
                      Chiming in- my son was initially dx stage IS, with similar scenario; normal CT Scan, but after orchietcomy numbers never normalized, than started to rise 4/5 weeks later another scan showed spread to lymph nodes. So definitely have another CT Scan, before chemo. My son's tumor marker numbers continued to rise until chemo was started. Wishing you the best.
                      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.

                      Comment


                      • #41
                        Thanks for your replies! I think I'm going to try some complimentary therapies on top then. I really do hope the 3 x cycles will be enough. The concept of it not working really scares me!

                        Trekga, how is your son doing now? His situation so far does sound similar. I've just received a call to book in a CT scan for this Wednesday so thanks for your advice. It sounds like the teratomas are the persistent ones. I hope he's doing OK.
                        Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                        Follow me and my journey: https://www.instagram.com/daleowendesign/

                        Comment


                        • #42
                          I don't see much point in another pre-chemo CT in your case. You are doing chemo no matter what the scan results are, might make sense to save on the radiation exposure until post chemo.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #43
                            If you recently had a CT then I am not sure of the utility of doing another one but I suppose that is a mute point as of now. Have the retested your beta-hCG to make sure that is want a lab error? I would want to make sure the labs are real before I started chemotherapy if there is no CT evidence of spread. Also, marijuana can increase beta-hCG levels, just something to keep in mind and if you are going to use alternative therapies, then you may want to make sure that your doctors knows this. It is my understanding that the levels are raised less than 100 but I am not an expert on the effects nor am I a physician, but it is something to be aware of.

                            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

                            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                            Comment


                            • #44
                              Well the CT scan was a disaster anyway! The dye burst into my tissue in my arm causing my horrific pain and having to shout STOP STOP while seeing my arm balloon up. They said it was contrast extravasation. I had a bit of a panic attack too, it was a horrible experience. The CT was cut short, but apparently they had enough imagery. This was yesterday and today luckily the dye has absorbed a lot and the swelling is going down but I have a nasty bruise there.

                              I'm waiting for a call back to see what my HCG levels are like and if they have anything to note from yesterday's scan, and another blood test tomorrow.

                              I have also been banking sperm this week. Apparently my sperm percentage is a little low, which I guess is understandable, so need to return again next week.

                              That's interesting in regards to CBD oil, maybe I'll chat to the doctor about this first then, thanks!
                              Diagnosed TC October 2017 - Left orchiectomy - 3xBEP - Awaiting results February 2018...

                              Follow me and my journey: https://www.instagram.com/daleowendesign/

                              Comment


                              • #45
                                Contrast extravasations suck, especially when they are using the power injectors nowadays.

                                Keep us posted on the beta-hCG and CT scan results. Again, I am not sure that cannabis can raise the beat-hCG into the hundreds but it is just something important to make sure your doctor is aware of incase their are questionable levels of beta-hCG that could end up leading to interventions that may not be needed (not specific to your situation but in general for others that may read later too).

                                ​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

                                For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                                Comment

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