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Waiting is the hardest part

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  • Waiting is the hardest part

    Hi everyone,
    Been lurking for a while and really appreciate the guidance on here.
    My husband has recently been diagnosed with a tumour 90% EC and 10% yolk sac with evidence of lymphatic spread. We feel like we have been thrown down the rabbit hole and now everything is taking so long!
    Got the results last Monday, CT not until tomorrow no results until we see Onc. Urologist referred to a general Oncologist, having read up on here not happy about that so trying to see a Specialist but can't get that appt until super slow Urologist office fax over records.
    Life is on hold until we know what the extent of this is and what the treatment will be .....
    My question is - does everything always take this long? And has anyone else tried to use a different Oncologist than the one their Urologist wanted them to see.
    I think the entire process may be hard enough without dealing with all this nonsense, and supposedly we have good health insurance!
    Apologies for the ranting and meandering .... it's all taking its toll after a month!

  • #2
    Hey Bones,

    Referrals for things of this nature are usually very fast. You don't want to wait too long. However, treatment will depend on the CT results so the Oncologist will require this in order to give his recommendations. Since you got the pathology results on Monday and you still have to wait for the CT results, I don't think the wait is too long. If you see an Oncologist next week that should be good! Since you have 90% EC and LVI there is a 50/50 chance that it's already spread (even if your CT is clear). Let's hope the CT is clear! If so, you will have 3 options: surveillance, 1-2 x BEP, or RPLND. I know how stressful the wait is!! In fact, everything about TC is stressful for me!!
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

    Comment


    • #3
      Also, what are you tumour markers like? That will also determine the treatment options you have.
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP

      Comment


      • #4
        IO then about 10 days for the pathology results then seeing an Oncologist in a couple of weeks is fine, you need to feel comfortable with the docs you are dealing with, a referring doc will often be used to working with the other doctor but it should be you choice to choose another.
        >>>>>>>>>
        TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
        TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

        Comment


        • #5
          IO then about 10 days for the pathology results then seeing an Oncologist in a couple of weeks is fine, you need to feel comfortable with the docs you are dealing with, a referring doc will often be used to working with the other doctor but it should be you choice to choose another.
          >>>>>>>>>
          TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
          TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

          Comment


          • #6
            Pre op bloods were AFP 89.1 HCG 141. Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods. Seeing first Onc next Thursday, the 'specialist' can't see him until Nov 3rd so the plan is to use him as a second opinion. Pathology showed positive for angiolymphatic invasion so the Urologist has already said 1 round of chemo minimum ..... just really hoping my husband can avoid the op. I guess you hear cancer and think that things will move fast ...

            Comment


            • #7
              Pre op bloods were AFP 89.1 HCG 141. Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods. Seeing first Onc next Thursday, the 'specialist' can't see him until Nov 3rd so the plan is to use him as a second opinion. Pathology showed positive for angiolymphatic invasion so the Urologist has already said 1 round of chemo minimum ..... just really hoping my husband can avoid the op. I guess you hear cancer and think that things will move fast ...

              Comment


              • #8
                Is the site running tonight?
                >>>>>>>>>
                TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
                TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

                Comment


                • #9
                  Waiting was the most agonizing part of the experience for me. My wife and I are go-getters by nature. Once we knew exactly what was wrong, we were able to put a plan together and start kicking cancer's butt. Regarding the oncology referrals, I took proactive steps in this matter and found my preferred oncologists before the pathology was even available. That way, when my doctor was prescribing next steps, I could ask him for specific referrals and make his job easier. I got referrals the morning after my pathology came back and was in to see the first oncologist within 2 weeks. One thing I've learned through this whole experience is to be my own advocate and not settle until I'm happy. I realize doctors are busy treating many, many patients, of which I am just one. Anything I could do to make their job easier seemed to pay dividends. They also seemed to respect me more because I was a patient who was informed, but not accusatory or skeptical of their advice. Being patient is a necessary evil of a cancer diagnosis, but don't be afraid to take matters into your own hands, identify the specialists you want to see, and ask for those referrals.
                  3/16/15: Urologist visit for suspicious lump. Tumor markers negative. Ultrasound showed solid mass.
                  3/18: Radical left I/O.
                  3/24/15: Pathology: 100% EC w/ LVI present. Chest CT clear, Abdo CT shows 3 enlarged nodes (1.0, 1.1, 1.6cm). Clinical Stage IIA.
                  5/4/15: Primary (open) RPLND w/ Dr. Foster at IU. 34 nodes removed, only 2 had presence of EC. Pathological Stage IIA.
                  June 2015: First ALL CLEAR!
                  August 2015: ALL CLEAR!
                  September 2015: Post-RPLND baseline CT scan ALL CLEAR! Lymphocele measuring 9x5x5cm was noted, surgeon said it was harmless and should resorb within a year.
                  November 2015: Bloodwork and chest x-ray clear
                  February 2016: Bloodwork, chest x-ray, CT scan clear
                  July 2016: Bloodwork, chest x-ray clear (CT scan in September)

                  Comment


                  • #10
                    I totally disagree with waiting that long. Any symptoms of spread? Back pain? Cough? Look up a reputable oncologist in your network and make an appointment. Contact your insurance company and ask them to advocate for you.

                    Comment


                    • #11
                      Thats exactly my thought Casbes! I have to say the Drs have been great, its getting past their receptionists and schedulers that are causing me an issue. No symptoms, thankfully although does need to go and get a dental infection sorted out next week with a specialist. In the midst of all this trying to get a job done!

                      Comment


                      • #12
                        Originally posted by Bones View Post
                        Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods.
                        I've never gotten lab results directly from the lab, its always gone to the doc first & he/she gives me the result.

                        Waiting is always one of the hardest parts of a cancer diagnosis. Unfortunately, it is quite unavoidable at times. It was about a month & a half from my I/O to my first chemo treatment, with various tests & doc visits occupying some of that time. Some waiting is to be expected & what you are experiencing is pretty normal & will have no effect on his treatment, so my advise is to try to relax & learn about TC while you wait. He will get through this as many of us have before him. There is little doubt of that.

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

                        Comment


                        • #13
                          Thanks Dave - really appreciate the calming vibe X
                          Like dcnovachris said, it's tough on our personality types to be so passive in the process. I'm guessing there is yet another life lesson to be had from the whole experience x

                          Comment


                          • #14
                            I decided to go to Sloan in NYC, they don't mess around. They are quick, the doctors near me were not as urgent as I'd wanted. My cancer is very advanced Stage 3, so waiting any longer was not an option.

                            Comment


                            • #15
                              Sage -

                              Great decision to advocate for yourself and seek treatment with doctors you trust. I quickly sought out the best doctors I could get in to see and was highly encouraged by how quickly they wanted to address the situation. I was early Stage II (low volume spread to abdominal lymph nodes), but they wasted no time in presenting my options, helping me select a treatment plan, and scheduling me for the RPLND surgery once I had made the decision. As for your Stage III diagnosis, rest assured that the treatment is extremely effective at curing even late stage, high risk disease. Best of luck and keep us updated!
                              3/16/15: Urologist visit for suspicious lump. Tumor markers negative. Ultrasound showed solid mass.
                              3/18: Radical left I/O.
                              3/24/15: Pathology: 100% EC w/ LVI present. Chest CT clear, Abdo CT shows 3 enlarged nodes (1.0, 1.1, 1.6cm). Clinical Stage IIA.
                              5/4/15: Primary (open) RPLND w/ Dr. Foster at IU. 34 nodes removed, only 2 had presence of EC. Pathological Stage IIA.
                              June 2015: First ALL CLEAR!
                              August 2015: ALL CLEAR!
                              September 2015: Post-RPLND baseline CT scan ALL CLEAR! Lymphocele measuring 9x5x5cm was noted, surgeon said it was harmless and should resorb within a year.
                              November 2015: Bloodwork and chest x-ray clear
                              February 2016: Bloodwork, chest x-ray, CT scan clear
                              July 2016: Bloodwork, chest x-ray clear (CT scan in September)

                              Comment

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