Announcement

Announcement Module
Collapse
No announcement yet.

First Oncology Visit Tomorrow

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

  • First Oncology Visit Tomorrow

    Hello everyone,

    I'm having a tough time grappling with this new diagnosis and also having a really crappy tumor type.

    26 y.o., left orchiectomy was 11/10/17
    Bhcg 9.9, afp 4.3

    Pathology
    50% teratoma, 45% embryonal, 5% yolk sac (yikes)
    CT - nonenlarged lymp nodes in the pelvis of undetermined significance, no distant mets
    confined to testis, lymphovascular involvement present (pT2)

    follow up labs
    Bhcg 0, afp 3.4

    So tomorrow is my first oncology appointment and I'm a little panicky tonight. Anyone else deal with the dreaded mixed germ cell tumor? Obviously teratomas are not good so I'm curious how other people cope with knowing that it doesn't treat as well as other cancers.

    I'm assuming my oncologist will want to move forward with either chemo or the RPLND. How did you mentally prepare for this?




  • #2
    If the CT shows visible but normal sized lymph nodes, you are potentially still a candidate for surveillance. Yolk sac in small percentages doesn't seem to impact treatment or outcomes as far as I understand. While chemo-resistant, Mature Teratoma spreads very slowly and if found usually can be surgically resected. Immature Teratoma, while very aggressive and more complicated is more rare. Your chances of full cure are quite high at this point.
    Last edited by biwi; 11-30-17, 10:10 AM.
    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


    • #3
      Thanks so much for responding. The oncologist does want to move forward with the RPLND, so I'll likely be hearing from a surgeon in my state once my oncologist makes a few calls. More of the waiting game for now...

      Comment


      • #4
        Did they say the size of your nodes? If they are still small, you may be able to put it off to continue surveillance for the time being. From the information here and talking to an urologist, it seems as though they do not like to do the RPLND until the nodes are larger then 1cm. This waiting game is probably one of the worst games any of us have ever played. Let us know what they say.
        DX 5/16/2017
        L I/O 5/16/2017
        AFP 51 HCG- always below 10 LDH- always below 200
        Primary tumor- PT2
        Staged at IB.

        PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

        All CT scans to current have not shown an increase in lymph node size.

        8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

        Comment


        • #5
          So I met with the Medical and Surgical Team at the University of Michigan. The Surgeon (Dr. Kaffengberger) trained with the team at MSK for two years after his surgery residency. He said that because of my tumor makeup and the fact that there was lymph-vascular invasion (40-55% chance recurrence, depending on what you read), it wouldn't be unreasonable to proceed with surgery. Due to the anxious type that I am, surgery might be the best option. I'm not sure I could mentally handle surveillance knowing there is such a high rate of relapse in my particular case. Anyone else had to make this tough call?

          Comment


          • #6
            Hi Dmac,

            Not a doctor - only offering my thoughts based on my experiences.

            The decision making is tough! I can totally empathize.

            Originally posted by DMac View Post
            So I met with the Medical and Surgical Team at the University of Michigan. The Surgeon (Dr. Kaffengberger) trained with the team at MSK for two years after his surgery residency. He said that because of my tumor makeup and the fact that there was lymph-vascular invasion (40-55% chance recurrence, depending on what you read), it wouldn't be unreasonable to proceed with surgery. Due to the anxious type that I am, surgery might be the best option. I'm not sure I could mentally handle surveillance knowing there is such a high rate of relapse in my particular case. Anyone else had to make this tough call?
            Based on what I understand you are Clinical Stage IB with ~50% relapse rate.

            Choices are:
            1. Surveillance
            2. Chemo (1xBEP)
            3. RPLND

            Given the large teratoma element which is not treatable by chemo, RPLND might be the better choice. RPLND will give you pathological evidence of what your disease state is -- which should help with anxiety.

            RPLND doesn't preclude chemo later (if needed). RPLND doesn't have so many of the long-term negative effects of chemo also. RPLND post-chemo, however, has some drawbacks. RPLND has to be done by an expert. If I ever need an RPLND I think I will go to Indiana U even though I'm on the west coast. Dr. Einhorn and his team are top-notch not only in their field but their empathy and outreach to patients.

            There are two schools of thought on Clinical Stage I: treat all patients the same vs. risk-adapted approach. In the end, we don't know who will get a relapse so what's a doctor to do with 50% coin flip if you get relapse: treat you and then risk over-treating you, not treat you and then you might get metastatic disease requiring 3xBEP and its side effects. My conclusion is that there is no right answer -- it's up to the individual and your risk tolerance. Consider the pros/cons of all the above. Note that some centers (like in Canada) treat all Clinical Stage IA and IB with surveillance.

            Also, mixed germ cell tumors are not uncommon as I understand -- in fact, I think most cases are mixed; high teratoma percentage I believe isn't that common. The predominance of embryonal cell component is an independent prognosticator for relapse.

            I find this guideline (section 7.3) very helpful and readable:
            https://uroweb.org/wp-content/upload...cer-2016-1.pdf

            Finally, the last thing to note is that the cure rate of any path is nearly that same and approaches 100%. In other words, there are multiple paths all leading to the same place.
            Last edited by mcintoda; 12-11-17, 11:55 PM.
            Age 31 - Portland, OR
            01NOV16- Pain in right testicle, palpable mass
            13NOV16- R I/O. Markers normal
            27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
            06DEC16 - CT scan clear
            09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
            03JAN17- Ended 1xBEP; start surveillance
            18MAR17-2nd pathology report shows 90% EC , 10% seminoma

            Comment


            • #7
              Thanks for all of the help, mcintoda. I feel much more comfortable making my decision now, I appreciate you taking the time to respond.

              Comment


              • #8
                FYI, herr is what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossT) has to say about teratoma:
                Teratoma - (1) Strictly speaking, teratoma is a benign growth. It is an odd sort of tumor in that it is basically composed of a number of different normal types of tissue, growing in abnormal places. I say strictly speaking it is benign, but it can act like a malignant tumor and spread. It is most commonly discussed in the post-chemo situation where the doctors want to remove masses left behind by the chemo because they may have teratoma in them. They do this because any tumor can grow and cause problems later on, plus teratoma tumors can become cancerous themselves, and those cancers are not as easy to treat as germ cell tumors. Because teratoma is made up of normal cells, chemotherapy does not affect it. (2) In the UK, teratoma is synonymous with nonseminoma
                You should find out from your doc if the tteratoma was mature or immature.

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

                Comment


                • #9
                  I see you went to the University if Michigan office. Where are you located? I am in SE Michigan as well, located near U of M! Feel free to message me if you'd like!
                  DX 5/16/2017
                  L I/O 5/16/2017
                  AFP 51 HCG- always below 10 LDH- always below 200
                  Primary tumor- PT2
                  Staged at IB.

                  PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

                  All CT scans to current have not shown an increase in lymph node size.

                  8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

                  Comment


                  • #10
                    ​DMac, i really hope you're doing well, could you give us an update when you feel up to it? The guys on here are really awesome, they know their stuff better than a lot of doctors I've met here in the UK. I really wish we had the excellence (but not the cost) of your doctors, trying to find a good oncologist is like trying to mine gold here. Trying to find an endocrinologist is like trying to weave your own urine into a fancy french bow whilst juggling with 5 sticks.
                    15/11/12: Lump found on right testicle.
                    16/11/12: Visit to GP, referred to urologist.
                    23/11/12: Consultation with urologist, blood taken markers normal apart from mildly raised LDH of 364.
                    24/11/12: Ultrasound confirms solid tumor.
                    28/11/12: CT scan of chest, abdomen and pelvis. Scan is clear.
                    30/11/12: Right IO, prosthetic testicle inserted.
                    17/12/12: pT1, 100% seminoma diagnosed.
                    Awaiting carboplatin treatment in Jan.

                    Comment


                    • #11
                      Quick update!

                      After a chance series of events, I talked with Dr. Einhorn on the phone and he recommended that I have the Surgery within 4-6 weeks (as mentioned above) post-orchiectomy. He hooked me up with a surgeon within a day and I ended up doing the open RPLND at Indiana University on December 22nd. I spent 3 nights in the hospital and headed home. The pain was pretty rough and my memory is hazy during that time but I'm doing much better now. Still sore today but able to walk around and my diet is improving. Even better news, the pathology report came back a few days ago as well; 33 nodes removed and no cancer found in any of them. The surgeon stated that the risk of teratoma returning is very small and the chance of embryonal carcinoma returning is in the single digits. Overall, I'm happy with the advice I received here and at Indiana. For me personally, doing the surgery in lieu of chemo was the best choice. Thanks all!

                      If anyone has questions let me know.

                      Comment


                      • #12
                        Thanks for the update! Sounds like your treatment plan has been good and hopefully your future only has surveillance appointments from now on!
                        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

                        Working...
                        X