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Does the waiting ever get easier?! asking for a friend

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  • Does the waiting ever get easier?! asking for a friend

    So my Orchiectomy was 4 weeks ago and so far all I’ve been told is it was cancer, the Uro didn’t even really want to tell me that much. He spent 10 minutes apologising for not phoning me 7 weeks ago to tell me I needed the op as I had to phone them.
    So he told me it was cancer and then said in the same breath, so I won’t see you again unless you have any problems with your scar goodbye. So I had to ask him what type of cancer, again didn’t want to tell me but he said it was a NSGCT and again tried to walk me to the door. Again I asked which one? again the hesitance, but looking like Pure EC they originally were thinking mixed germ cell but they decided on pure, same breath but because we've transferred you I don’t really want to say one way or the other the other hospital knows more about it than we do if I had my computer I could read what they’ve put but I don’t so I wont goodbye.
    So he got me out of the room that time and walked away, I am now left with such minimal info it was pointless losing 2/3 hours of work over plus I’ve now been left stranded waiting to hopefully hear from another hospital but my original Uro is done with me.
    Again it’s been 4 weeks so I’ve lived on the internet and I’ve found that the internet giveth and the internet taketh away! For every promising story there seems to be one that sounds like lots of chemo/surgery. Also I love my partner to bits but she’s getting overly worried when I’m trying not to be and then she starts getting me worried.
    so my question again, should there be over 4 weeks from op to full pathology treatment plan?

  • #2
    Also is it true pure EC don’t produce tumour markers so thinking I didn’t have any was could literally means nothing?

    Comment


    • #3
      Welcome. Not always great to be here, but we can help you get through the journey like others have us.

      Who's care are you being transferred to? Preferably an oncologist? When is your first meeting with them? You should be having CT scans and bloodwork done to check for tumor markers and spread.
      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


      • #4
        Originally posted by biwi View Post
        Welcome. Not always great to be here, but we can help you get through the journey like others have us.

        Who's care are you being transferred to? Preferably an oncologist? When is your first meeting with them? You should be having CT scans and bloodwork done to check for tumor markers and spread.
        I’ve been transferred into the care of Addenbrookes hospital, I haven’t heard from them so I don’t know who the Oncologist will be. As I haven’t heard I don’t have a meeting set up with them. I have had the CT scan but no bloods, the internet seems to think the usual blood markers work for Pure EC as I’ve never had a raised marker, I’ve read CD30 is used for EC but again my drs have all but kept me out of the loop I’ve had to chase them every step of the way.

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        • #5
          So i got bored of waiting and phoned the new hospital. my case is being seen on monday by the MDT team. still think is so odd its taken over 4 weeks to get to this stage.

          Comment


          • #6
            Seems a bit odd. While TC is rare, but th e treatments are all pretty standard usually because it is so curable.
            3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

            Comment


            • #7
              Originally posted by Breckarns View Post
              I have had the CT scan but no bloods, the internet seems to think the usual blood markers work for Pure EC as I've never had a raised marker, .
              .

              First question: What were the results of the CT scan?
              Second question: If you haven't had any bloodwork done, how do you know you don't have raised markers?

              Blood markers are only useful when positive or declining from positive. Every type of TC can produce markers, but a lack of them is meaningless. Sometimes TC can be present & there are not blood markers.

              Where are you located? Your uro seems totally unprofessional, the wait times for results seems way too long, & the referral doc/hospital not calling for so long is ridiculous.Do you have the option to choose different docs & hospitals?

              Dave


              Last edited by Davepet; 09-08-18, 12:18 AM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Morning Davepet,

                No results from CT yet they were done 4 days ago and the new hospital are talking about them Monday so I’ll hear after. Pre op bloods were all clear except my CRP was raised, but that’s just a marker of inflammation.

                Not sure where but I did read pure EC didn’t raise markers, or is this a case of the internet being the internet so not that reliable.

                I am located East Midlands in the UK, yeah my URO was unprofessional, he spent half the conversation either apologising for not calling me after my US, or telling me he can’t give me the results they’ve got just in case they’re wrong now I’ve been transferred. There’s not really that many hospitals for me to pick and choose from if I tell them i want a new one, plus I’m not sure where I stand with NHS.

                Nick

                Comment


                • #9
                  Hey Nick, sorry to hear about your troubles!! If you can, it's worth to kick up a fuss over it - you need a specialist who knows what they are doing that you can trust. It might be worth finding someone online (I'm sure folks here could recommend someone) to potentially look after you or get a second opinion if you're not getting the answers you want!

                  This is the best route to peace of mind - knowing exactly what's going on and having the right channel to ask questions. They should be giving results of the CT already so you know where you stand with respect to treatment options.
                  July 2016 - Left I/O
                  December 2016 - BEPx3
                  All clear for 1 year!

                  My Testicular Cancer Support Kit
                  First Oncologist Visit Checklist
                  Simplify Cancer Podcast

                  Comment


                  • #10
                    Afraid I don't know what CRP is, normally they test AFP, bhcg & LDH, the first two are actual markers, LDH is a measure of inflammation & can be raised by a number of things.

                    Pure EC can certainly raise markers & we have dozens on this forum who can confirm that from personal experience. There are also dozens who did not have raised markers, which is why I said that markers are only useful when raised.

                    Hopefully the new doc will give you some answers sooner, if not, make a pest of yourself, sometimes that's what has yto happen, I'm afraid.

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

                    Comment


                    • #11
                      Hi Breckans. As I deduced, in the case of TC urologist's standard duty is: order preoperative markers, order/do the ultrasound, do the orchidectomy, order postoperative markers, orther pathology report, order CT, and then to make report with staging. His job ends there, and oncologist takes over. You should have all that by now. Also, it is your life on stake here, don't wait for anyone to call you, take the iniciative.
                      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                      Waiting...

                      Comment


                      • #12
                        Hi harxxony,

                        It would be good if my urologist had done those things but he hasn’t as got art way through that list and essentially started everything from scratch by giving me to another urologist/oncologist not sure yet as they haven’t said.
                        I’m sure I said the only contact from the hospital has been me phoning them every step of the way as it is my health and they’re dragging their feet. I can only guess the NHS does things slower as I have been told numerous times to stop bugging them and I’ll hear when they’re ready for me to hear. Urology secretaries don’t seem to like me.
                        The urologist booked US, ignored me so another resident urologist told me about the US results booked my op and pre op bloods etc. A different urologist did the surgery, I phoned to see about results got told to wait, got an appointment cancelled, got a new one which I’ve spoken about, had my CT the day later. No post op bloods ordered. I phoned new hospital as was getting impatient, they’ve had to redo the pathology report, they also do a weekly multi disciplinary team meeting either weekly or fortnightly. First one for my case is Monday when they’ve promised to phone me back if I haven’t heard by 4ish I’ll phone them again.
                        Believe me I’m not meekly waiting I’m just getting bored as everyone else has days yet mines dragging.
                        Nick

                        Comment


                        • #13
                          While it seems clear that the US health system has serious flaws, the UK NHS seems to be flawed in different areas. Why can't anyone just get it right?

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

                          Comment


                          • #14
                            Hi Nick. Well, you are in bureaucratic nightmare, but from the medical point of view it is not that bad. Second pathology report means that they do take your problem with proper care, and also you did CT scan. Postoperative markers are not crucial for adequate diagnosis if preoperative were normal, so looks everything goes well though slow. Let's hope you will now more this week.
                            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                            Waiting...

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