Announcement

Announcement Module
Collapse
No announcement yet.

Surveillance for stage Ib seminoma?

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Surveillance for stage Ib seminoma?

    Hello,
    My first initial post is here,
    http://www.tc-cancer.com/forum/forum...n-very-worried

    I was diagnosed with stage Ib seminoma, 3cm, LVI, extensive RTI and early hilar fat invasion stage T2. My medical oncologist and a couple of experts I reached out to for help are suggesting surveillance but I am feeling very anxious with this option. If i was a 1a with no rete i would take it but at 1b I am puzzled as to why this is even suggested. I thought that adjuvant therapy was the indicated choice for stage 1b with risk factors.
    My only CT scan flagged a 9mm node in the pelvis, between (or on) the external iliac chain and the I/O scaring from the surgery, but my medical oncologist said that when she looked at the scan didn't see anything there and is not concerned about it and wants to proceed with surveillance (suggested follow up in 4 months) or treatment. I am a little concerned about having two contradicting opinions of the same scan.
    If i want to do treatment 1 shot of carboplatin is recommended by my doctor but I am afraid one is not enough and if I should do 2 instead.
    I am also considering RPLND surgery to avoid all the toxicity associated with treatment (and to add more safety net option between me and the cancer) , but I don't know if it should be done now, while I'm at 1b or wait and see if I can do it later.
    Last edited by db79; 10-02-19, 02:21 AM.

  • #2
    No decision is wrong for what makes you comfortable. As long as there is sound medical logic behind your choice.
    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


    • #3
      Why did you do carbo at stage 2 edotech2001? I thought stage 2 was either radiation or reg chemo. My story might be similar to yours since I have a enlarged node I dont know for sure what stage I am. Im surprised to see how many people suggest against carboplatin, im wondering if I should do radiation then?

      Comment


      • #4
        I had adjuvant because I did not educate my self at that point on cancer and treatment.
        Honestly I put to much trust in the oncologist I had at the time. He recommended it and I blindly followed thru with it because I was itching to get back to work and disarming bombs in the military. Hindsight doesn't help me in my choice, but it does help me guide others like yourself through the process.
        It was a calculated choice I made because radiation was not an option for me. I have already reached life time limit
        So it was 1 adjuvant and get back in the fight ASAP or 3 rds of BEP and be down for 3 plus months. I was comfortable with his recommendation at the time.
        But that was me and it was really a numbers game because 1 didnt do it, 3 didnt do it, even RPLND didnt stop it.
        To know me is to know I do nothing easy or simple.
        Fast forward today and I am much more simple and relaxed in retirement at age 49 and half.
        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


        • #5
          Originally posted by db79 View Post
          My only CT scan flagged a 9mm node in the pelvis, between (or on) the external iliac chain and the I/O scaring from the surgery, but my medical oncologist said that when she looked at the scan didn't see anything there and is not concerned about it and wants to proceed with surveillance (suggested follow up in 4 months) or treatment. I am a little concerned about having two contradicting opinions of the same scan.
          If i want to do treatment 1 shot of carboplatin is recommended by my doctor but I am afraid one is not enough and if I should do 2 instead.
          I am also considering RPLND surgery to avoid all the toxicity associated with treatment (and to add more safety net option between me and the cancer) , but I don't know if it should be done now, while I'm at 1b or wait and see if I can do it later.
          Pelvis node is most probably unrelated with TC, as pelvis is not a landing zone for TC metastasis, especially not in early TC. Also, 9mm is not an enlarged node, it is flaged only as little suspicious. So, I'd say that your CT is 99% clean for now. Bear in mind that 4 shots of BEP (P stands for platinum) is maximum life dose, so there is no point of spending 2 doses now as adjuvant treatment, it is better to save doses in the case of confirmed reccurence. 1 shot of carboplatin (or none) now seems as reasonable plan, if it failed and TC reccur, you can still get 3xBEP.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

          Comment


          • #6
            I called the place where I had my CT scan and asked for a second opinion of my scan by a different doctor. He said that there's nothing there and didnt flag anything as suspicious, which is in line with what my oncologist said after looking at it. So im a stage 1b seminoma no suspicious nodes on CT scan.
            Now I have to choose my next step. Is anybody here with a similar diagnosis who went surveillance? What about radiation or carbo? Im having a hard time deciding what to do.

            Comment


            • #7
              Carboplatin seems to lower the risk for relapse. From what I read the relapse rates for(usually) low risk group on only surveillance is 15% while on carbo is 9% but we have to keep in mind that this number is for higher risk group (1-2 risk factors) for which the relapse rate are up to 30% without adjuvant treatment (I think, I couldn't find too many numbers for the high risk group on surveillance only).

              I'm sorry im just running all these numbers in my head and try to make the right decision. I'm considering carbo since I have the rete invasion and LVI. My doc won't really talk about all the different risk factors but just generalizes me a simply stage 1 seminoma with 80-85% cure rate with just the orchiectomy. She suggested I go on surveillance but I dont know if I can just sit by and not do anything.
              Are there fertility problems with one dose of carbo? What about other problems like kidney damage?

              Comment


              • #8
                DB,

                I was diagnosed with Stage 1b seminoma in June 2018. As you, I had additional risk factors. And, as others have stated, neither surveillance nor adjuvant carboplatin is a bad decision medically. Most doctors lean towards surveillance, and I understand why.

                For me, the decision came down to my personality; I wanted to be aggressive and not "wait" for cancer to come back. A year and 3 months later, I'm glad I decided to do the carbo. Of course, I'll never know if it was a good decision or not. I guess I'm saying you should feel comfortable doing whatever seems right for you (and your doctor).

                John
                6/4/18 BHCG 452, AFP 1
                6/13/18 CT Scan, no involvement beyond left testicle
                6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
                6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
                7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
                7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
                8/27/18 Chest CT Scan clear
                9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
                9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
                11/23/18 CT Scan, "No evidence of residual or recurrent disease, no lymphadenopathy or evidence of metastasis"
                11/27/18 BHCG<2, AFP 2.0, LDH 173
                5/24/18 BHCG<2, AFP 2.0, LDH 161
                6/17/19 12 months - all clear. "Cancer-Free"

                Comment


                • #9
                  Thank you John. Its a risk either way, with or without, but like you I also want to be aggressive and do something. Why did you go with one carbo and not two? I dont want to over do it but at the same time I want to do as much as possible to kick this thing. From what I could gather reading medical journals and forums is that the first shot cuts relapses by half and the second cuts it by half again. The problem is that none of the treatments are 100% and only a smaller percentage needs any treatments to begin with. However if I do nothing now the treatment burden will be higher later, but it could be even higher still if I do something now. If 80% dont need treatment then they are over-treated, and if 10% relapse anyway with adjuvant treatment and still need more treatment, then 90% are over-treated. SO really only about 10% that benefit from adjuvant treatment?

                  Comment


                  • #10
                    I emailed Dr Einhorn and he said that "You are almost certainly cured with just orchiectomy alone with > 90 % cure rate. Strongly recommend surveillance"
                    I know he is the most authoritive person on TC but I dont know why he said >90 cured rate with orchiectomy alone. Was he refering to my case in particular or general stage 1?

                    Comment


                    • #11
                      If you haven't sent him the scans, he must have been talking in general for stage 1 - most people won't need chemo or other treatment beyond. You will always have the option to go that way, but, of course, do what's right for you and your peace of mind!
                      July 2016 - Left I/O
                      December 2016 - BEPx3
                      All clear for 2.5 years now + new baby!

                      Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
                      My Testicular Cancer Support Kit
                      First Oncologist Visit Checklist
                      Simplify Cancer Podcast

                      Comment


                      • #12
                        If you haven't sent him the scans, he must have been talking in general for stage 1 - most people won't need chemo or other treatment beyond. You will always have the option to go that way, but, of course, do what's right for you and your peace of mind!
                        July 2016 - Left I/O
                        December 2016 - BEPx3
                        All clear for 2.5 years now + new baby!

                        Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
                        My Testicular Cancer Support Kit
                        First Oncologist Visit Checklist
                        Simplify Cancer Podcast

                        Comment


                        • #13
                          Originally posted by db79 View Post
                          Thank you John. Its a risk either way, with or without, but like you I also want to be aggressive and do something. Why did you go with one carbo and not two? I dont want to over do it but at the same time I want to do as much as possible to kick this thing. From what I could gather reading medical journals and forums is that the first shot cuts relapses by half and the second cuts it by half again. The problem is that none of the treatments are 100% and only a smaller percentage needs any treatments to begin with. However if I do nothing now the treatment burden will be higher later, but it could be even higher still if I do something now. If 80% dont need treatment then they are over-treated, and if 10% relapse anyway with adjuvant treatment and still need more treatment, then 90% are over-treated. SO really only about 10% that benefit from adjuvant treatment?

                          I discussed 2X Carbo with my Onocologist, but only briefly. He didn't believe that the impact of the second dose was enough to warrant twice the amount of carbo. I made the best decision I could for myself (and my family) at the time, and there's no reason to look back or second guess myself.

                          Look at it this way - you have a couple good options available to you.
                          6/4/18 BHCG 452, AFP 1
                          6/13/18 CT Scan, no involvement beyond left testicle
                          6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
                          6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
                          7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
                          7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
                          8/27/18 Chest CT Scan clear
                          9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
                          9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
                          11/23/18 CT Scan, "No evidence of residual or recurrent disease, no lymphadenopathy or evidence of metastasis"
                          11/27/18 BHCG<2, AFP 2.0, LDH 173
                          5/24/18 BHCG<2, AFP 2.0, LDH 161
                          6/17/19 12 months - all clear. "Cancer-Free"

                          Comment


                          • #14
                            Does anyone know how much time can pass between the I/O and adjuvant carboplatin or radiation before it's too late to do the treatments?

                            Comment

                            Working...
                            X