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  • 50/50 What is next?

    Hi.

    I am browsing this forum for 3 months now. I decided to post a question.This forum is really helpful. My doctors are silent professionals. I guess the road to recovery is different for everybody. So amid the silent professionals it was a real help finding this forum and your stories and realizing how this disease behaves and the treatments involved. I felt productive while reading the blog on my recovery. It helped a lot.

    My story:

    After orchiectomy in July on the first day I could hardly get up and walk. I had an unlucky rare occurrence of hematoma in my "belly region" and in my scrotum region. It was painful. My scrotum turned black - yikes - the color of death - and I was in pain. I stayed an additional night in the hospital for observation. The next morning after breakfast and visit from the doctors I finally went home. I took metamizole and/or ibuprofen 3x day for 2 weeks and only went out of bed for the toilet and bathroom. It hurt when I stood up or sat down and was fine when laying down. It then took two more weeks with minimal painkillers and gradual absorption to walk with no pain again. I started walking slowly and going up to 6km a day in August because my legs were all flimsy from laying down for a month and it is now the first of September and I am walking fast, able to do a 20 km track and moving like a normal "young" guy again. Also after surgery I immediately started Terrano therapy - a customary small glass of local red wine a day for health benefits (iron,antioxidants,vasodilation) and for lifting ones spirits. After surgery it was a hard time for me but it gets better and I feel great now. I feel good about all the treatment up to date and the results and also understand I am not out of the woods yet.

    My question:

    I guess my question is what do you think is next for me and what is my outlook and the best treatment modality for me? I had a CT July 23 all clear (cyst on kidney - radiologist suggested surveillance and mesentery reactive lymph nodes- said to be unrelated to TC) my markers are slowly falling and there is a good feeling and also a feeling of mild urgency of treatment while I am not yet visibly metastasizing to my lymph nodes (or lungs). I have a 50% chance of metastasizing as I have lymphovascular invasion. Do you think I could be a candidate for RPLND for pathological diagnosis and treatment if my markers normalize? What do you guys think is the next step in my treatment? Also chemo. What would be the protocol. Is the protocol based on my initial markers before orchiectomy or on current markers if they go up and does the tumor pathology or initial marker elevation play a role in my treatment be it chemo or lymph surgery ? Any feedback is appreciated. I guess what I would like to hear is how would you treat me and what can I expect. Also what supplement food or drink is good after surgery - or when on chemo. Did any of you take protein shakes during chemo?

    P.s.:My doctors told me I will have ultrasound checkups (no date yet) instead of CT scan. We supposedly have "designated" - for a lack of a better term - ultrasound specialist where I am from and if they see anything if I understand things right - only then a CT is ordered.

    July 7.2019 - right orchiectomy , serum HCG - 913, AFP - 438, LDH- normal
    Histology - Yolk sac - 44%, seminoma - 35%, EC - 15%, teratoma - 5%, chorio - 1% LVI+
    August 5 - HCG < 0,2 AFP - 19,6 LDH - 3,36
    August 19 - HCG < 0,2 AFP - 11,1 (serum almost normal Yey!
    September 2 next appointment ... I am keeping my fingers crossed for markers to normalize ...

  • #2
    Hmmm, quite a mixed bag here. hcg has dropped nicely & clear CT scan are all positive signs. That tumor mix is a little concerning & added concern is that AFP still isn't "normal", but it is below the 25 threshold for assuming cancer. I'd say you might be offered surveillance, 1xBEP or possibly RPLND, depending on where you are & your doc's experience. I'm not sure how good an U/S is at detecting enlarged nodes though, CT scans seem to be the standard of care these days as far as I've heard.

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

    Comment


    • #3
      I agree with Dave.

      AFP is still elevated, even it is under 25, i have big concern.

      I would like to consult an TC expert, also I think 2x BEP or RPLND should be considered. I know I am aggressive for TC treatment, but when it relapse, it was a nightmare for me and my son.

      Best wishes to you

      Amy, Ran’s mom
      Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

      08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

      Comment


      • #4
        A mixed bag Dave....If only I had a Russian roulette .....well I have to take what I am given. If I understand things right, for LVI+ there is a coin flip chance of occult metastasis in the body (blood and lymph), and no better markers on offer. So doctors say RPLND is not advisable as of this moment. Was offered low dose chemo if all goes to plan. My markers will be evaluated and I will recive a CT scan in about a week. Then if all clear I will get low dose chemo as soon as possible. Things could still go the other way (visible cancer or markers and 3 or 4 doses of chemo) but I am hoping for the best. Was dreaming of avoiding chemo but LVI+ is I reckon best had with chemo. Thank god we have the option I guess.

        Amy I see your 24 year old son Ran got both full chemo and RPLND. I hope he is feeling better and optimistic about his future.


        In my case there is a lot of fear, hoping, researching and strong emotions of all kind, but only a day before and after my visit to the doctors. The rest of the time I occupy my self with my hobbies. Also my sister informed me that A new study links optimism and prolonged life. So we must all be optimistic she said.

        And she is right.

        Comment


        • #5
          Marker update:
          2.9.2019 AFP 10,9 , HCG < 0.2 , LDH 2,4

          Any thoughts guys?

          Comment


          • #6
            I was wondering about my slow marker decline. I heard of this effect during chemo, but not after orchidectomy. Is this a normal thing for stage I or a sign of something like stage II?
            Amy do you know of any expert willing to help? I would like another expert to look at the slow marker decline and pathology info. How do I go about it. Do I ask my onco to make contact or do I do it? I am socially inept with doctors. My hospital is not the best but it gets about 90 guys a year here for TC. I have no idea how many my personal doctor has treated so far...i guess a lot. I do trust my doctors but 2 heads are better than one. I took a long walk today 10km or 6mi and I am glad I did.

            Comment


            • #7
              Contact dr. Einhorn leinhorn@iu.edu. He is TC expert and a great man.
              90 guys with TC in your hospital every year? In Slovenia?? wow

              Comment


              • #8
                Hi Primo,

                Tumor markers have half-life period, normally AFP is 5-7 days. Bhcg is shorter 1.5-3 days. That means if in beginning AFP is 100 after one week should be 50, and the second week should decline to 25. I calculated your AFP again, it was not bad, because TC experts take 25 as a normal board line .

                Where do you live? I am living in Germany, my son is studying in US. TC is a rare Cancer, lots of doctors don't have enough experience. But there exist a TC experts List , folk in this forum can help you to get a good one if they know where you are living.

                To have a second opinion always good.

                I am not a TC expert, but I do hope I can help TC patients as much as I can, because I got lots support during this journey.

                To have an experience doctor is very important from my opinion.

                Best regards

                Amy, Ran’s Mom
                Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                Comment


                • #9
                  Originally posted by Primo View Post
                  Marker update:
                  2.9.2019 AFP 10,9 , HCG < 0.2 , LDH 2,4

                  Any thoughts guys?
                  Your LDH & hcg are fine, your AFP is above normal but below in the concern area. Just keep monitoring it, probably not a problem.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • #10
                    Went to see my doctors.1x BEP is not on the table. We will wait and I will get a CT in 3 weeks and also bloodwork and when they see the cancer spreading I will get full chemo. I do not think I am 50/50 anymore with my doctor talking metastasis. They do not want to do RPLND I asked twice now. The cancer spreads by blood. I do not like the waiting game but I think they do not like the morbid operation as it could be in vain. I think my remaining testicle is a little bigger I guess doing overtime? I have (to) come to terms with my doctor-diagnosis-treatment. I think my high marker value is why 1x BEP was not possible. I am going to an island in the Adriatic for two weeks to take my mind off of cancer. Dr. Leinhorn was quick to answer with RPLND or surveillance. It was good to have a second opinion. Thank you for the contact info. Unfortunately it seems I now have 2 doctors and 3 opinions. Lets wait and see.

                    Comment


                    • #11
                      9.9.2019 AFP 11,4, LDH 2,24, BHCG 0,2. AFP marker is tiny bit elevated I hope it stays put fot the next 2 weeks when I have my next test. My primary doctor said it is sometimes good to wait and not rush in like a fool. Offered medical psychiatric help. I declined. I am stressed but at the moment I can handle it myself.

                      Comment


                      • #12
                        Here is what the Testicular Cancer Resource Center dictionary ( http://thetcrc.org/dictionary.html) says about AFP, the bolded text is by me:
                        Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
                        So you should probably consider refusing treatment unless your AFP more than doubles. Doc Einhorn is the preeminent TC expert IN THE WORLD. He developed the BEP chemo that is responsible for so many of us surviving our TC. If he says surveillance or RPLND, I would choose one of those options, sounds like there may not be a surgeon with the experience for a RPLND where you live? Would your doc be willing to contact Doc E?
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          This is good info Dave. I think I understand.... with elevated markers the odds are in favor of metastatic cancer but I have to wait until AFP goes north of 25 or a positive CT. I have a blood and CT scan in two weeks . I will talk to my doctor about my markers and about consulting Doc E. I must use my words wisely not to offend the good doctor. I do trust her but will contact Doc E myself if I have to. He answers quickly and a second opinion from an expert is reassuring and wise. I guess BEPx3 or BEPx4 in October.

                          Comment


                          • #14
                            Dave I did find out about RPLND. It was used here for diagnosis, when CT was not an option 20 or more years ago. But now our doctors also do modern laparoscopic surgery and we also have 2 new da Vinci robots one for every million living here. They are in use for all kinds of surgery. Our doctors also go across the pond to learn about surgery. This info is hard to get to, there is no public advertisement about healthcare medical procedures or about our doctors or drugs on prescription - I guess it is so because of legislation and also there is no warranty on medical care. We also have private practice.

                            Comment


                            • #15
                              Agree that with clear CT's and AFP being only being ever so slightly elevated, there is zero reason not to go to wait-and-see. There is a decent chance that your AFP is naturally slightly high, or you have other things going on (it can be secreted by the liver as well). Only if the AFP starts increasing above that 25 number (or CT's reveal enlarged lymph nodes) would I consider chemo.
                              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: begin 4xEP, end 9/18/15
                              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!
                              4/15/19: all clears up to this date!

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