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  • Fiance Preparing to Start Chemo

    Hi all!
    ​My fiancé, Matt, was diagnosed 4-1-16, had a left orchiectomy 4-4-16, we found out 4-11-16 that he his tumor was non-seminoma and it was quite large (4.6cmx3.5x3.2) and there was lymphatic invasion present. He did a CT scan today and we are waiting on the results but we were told that either way he is looking at chemo. Oh, and our wedding is 4-22-16.
    My biggest question is about caring for him during the chemo treatments. In your experience, will he need someone to stay home with him during treatment? I can take FMLA leave to stay with him as much as I need to but financially that would be hard. I know I will at least take off enough to be with him during the actual treatments. I just can't bear the thought of being at work while he is sitting in a hospital room getting poison pumped into his veins. I have been lucky to have been able to be right by his side for all of this so far and would like to continue to do so. Will I need to plan to be home with him the 1st week of treatment? What about the 2nd or 3rd? It will most likely be BEP, what is the schedule like with that? When will he be feeling the worst?
    I am also concerned about getting him the best possible treatment. Dr. Einhorn and team is within network on his insurance but they are about 6 hours away. I don't know much about the oncologists here and I am worried that they might not have much experience with TC. Would you recommend trying to travel to Indianapolis for treatments?
    Thank you so much for any advice or insights you can give me! This is very overwhelming and I am a planner so the not knowing is really getting to me.
    Thanks!
    Mallory

  • #2
    Mallory - I'm sorry to hear about your fiance and this occurring so close to your wedding, but you've come to the right place for advice and support. My story is similar in that we found out I had cancer just 10 months after our wedding. It can be very stressful to juggle both wedding and treatment options at once, but find comfort in the fact that this is a very curable cancer.

    One thing I would recommend immediately is to schedule a second opinion regarding treatment. Most urologists and oncologists see very few TC cases and, unfortunately, the default treatment option is usually chemo. However, without the CT scan results, your fiance's staging is not complete and it is not yet certain if chemo is his only, or most likely, option. Do you know if his tumor markers were elevated prior to, or after, surgery? If you want to start a family within the next few years, it may be worth considering surveillance or the RPLND if they are presented as options.

    If you have no concerns making the 6-hour drive to Indiana, or a flight, I highly recommend it. We flew out from northern Virginia for the second opinion and then, two weeks later, drove the 10 hours for my RPLND surgery. In my opinion, there's just no substitute for the expert opinions if you can get them. If Dr. Einhorn is unavailable, they will likely refer you to Dr. Nasser Hanna. He was my consulting oncologist and continues to oversee my treatment protocol. In the event that chemo is needed, it's not critical to have it done at Indiana. The infusions can take place at a local office.

    Unfortunately, I can't speak to chemo beyond that. But there are many survivors on this forum who can answer the specific questions you have. Best of luck and please let us know how it goes.

    Chris
    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


    • #3
      Mallory,

      I'll echo what Chris said. Chris and I had a very similar disease profile. We each were diagnosed shortly after our weddings and elected to have primarry RPLND.

      Unfortunately, I relapsed and needed chemo and tomorrow is my last day. I am on 4X EP so can only speak to that. Someone will need to be with Matt during his chemo infusions. He shouldn't drive.

      During the first few rest days, it was good for me to have someone at home to help with meals etc. Not 24 hour care. If you have the ability to work from home, that would be ideal. During the second rest week, assuming no major complications, I think you could go back to work.

      Keep us updated and I wish you the best through this tough time.

      Jared.

      Comment


      • #4
        Hey Mallory,

        Sorry to hear about your story that you're living with your fiancé.

        For myself, I was diagnosed 4 months after my wedding. Kind of weird thing, but married guys seem to be at risk for TC.

        I'll echo also what Chris and Jared said. For now, we don't know how much cycles he will have. If the scan is negative, he would be a candidate for surveillance or RPLND, but only if the tumor markers are negative. Do you have them ?

        Go with a center of excellence with TC, no matter what.

        I'll add if you want to start a family, your fiancé should be doing sperm banking.

        Best wishes for you and your fiancé and congratulations for your coming wedding !

        Jean-Philippe
        December 15, 2015 : Right I/O. Markers normal.
        December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
        January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
        February 2016 : Markers normal.
        March 2016 : Markers normal.
        April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
        April 25, 2016 : Happy birthday ! Relapsed confirmed.
        May 2, 2016 : BEP x 3 begins.
        July 3, 2016 : BEP x 3 ends.
        July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
        December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
        June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

        Comment


        • #5
          Thank you for your quick responses, guys!

          I will definitely look into getting him a second opinion in Indiana. Can I ask how you go about that? Should I ask his urologist for a referral or just call Indiana directly?

          His tumor markers before surgery: HCG-normal, AFP-345.7, LDH-316. I don't know what his post-surgery tumor markers are because the urologist said that we need to wait a couple of weeks before testing again. He said something about the half-life of the cells and that the reading wouldn't be accurate if we did it too soon after the surgery.

          Chris and Jared- I was kind of surprised to hear that you both opted for the RPLND surgery. The things I have read made it seem like it is a very invasive surgery with some very scary potential side effects. Can I ask why you chose to go with that instead of chemo? Our doctor has only mentioned it in passing so I don't know much about the surgery. The urologist told us that we were probably looking at chemo no matter what, but if there are other (potentially better) options, I want to know about them.

          Thank you so much for your responses, it really helps to hear from people who have been there.

          Mallory

          Comment


          • #6
            Hey Mallory,

            - For the referral in Indiana, ask your urologist.

            - Tumor markers : HCG and LDH are normal. AFP is high. Half-life of AFP is 5 - 7 days, so we should see a decrease in 25 - 30 days (biologic clearance of markers of the body is around 5 half-times). Then, we'll have a better look.

            - For RPLND, I will let Chris and Jared answer. Let's say that if the AFP is high at control, RPLND won't be an option and he should be headed to chemo.

            All the best,

            Jean-Philippe
            December 15, 2015 : Right I/O. Markers normal.
            December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
            January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
            February 2016 : Markers normal.
            March 2016 : Markers normal.
            April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
            April 25, 2016 : Happy birthday ! Relapsed confirmed.
            May 2, 2016 : BEP x 3 begins.
            July 3, 2016 : BEP x 3 ends.
            July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
            December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
            June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

            Comment


            • #7
              When I decided for primary rplnd, my markers were normal pre and post l/O. But my pathology was 100% embryonic carcinoma with lvi. With those two factors my rate for relapse was greater than 50%. With those facts, the patient will generally have 3 choices. Surveillance, 1 cycle of chemo (adjuvent), or rplnd. The survival rate is basically identical for all of them. The decision for me was based on a desire to avoid chemo. Now that I've had both, I can say that while the surgery is nasty, 4 cycles of chemo is worse and will effect me for a long time. Some hospitals have preferences in how they would treat. Sloan kettering (where I am being treated) favors rplnd or surveillance for stage 1b. They will not give adjuvent chemo. By doing the rplnd, the patient gets a very accurate sense of whether he is actually stage 1b or actually had hidden disease in the abdomen.

              Another thing to consider is the ability to get to a top surgeon. Most oncologists can give a BEP or EP protocol, but very few surgeons can do an rplnd.

              I hope that helps. Please keep asking questions.

              Comment


              • #8
                Well, your uro really doesn't know what treatments may be recommended, this board is full of posts from guys whose uros didn't have a clue about current treatment recommendations. Has he been referred to on oncologist yet? Also, there are several types of non-seminomas, did they tell you the exact makeup of his tumor?

                I'd ask about getting the markers checked now, if the AFP #'s have dropped by over half, that would be very encouraging.

                In the event chemo is actually needed, I did fine on my own, we simply could not afford for my wife to take time off, so I even drove the 40 minute one way commute to & from infusions. I admit there were a couple of rides home where I probably should not have been behind the wheel due to fatigue, but most of the times, no problems. We are, however, all different in how chemo affects us. It does seem that most of us have their lowest point the weekend after the long 5 day week and that it gets a bit worse with each cycle.

                However, lets not get too far ahead of ourselves. We need the exact percentages of the tumor, post I/O markers, & CT results before anyone can figure out what treatment may or may not be needed. It is unfortunate that uros seem to feel compelled to state as fact that which they simply do not have enough info to even make an educated guess about.

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

                Comment


                • #9
                  Hi guys!

                  ​Sorry it took me so long to reply, we got married on 4-22-16 and then went to Hawaii for our honeymoon immediately after. Matt's CT scan came back mostly clear. There was one small node that they want to keep an eye on but for now, they said that it is too small to be a concern. I tried calling the urologist the day before the wedding to get Matt an appointment to have his bloodwork done when we got back from the honeymoon. That was a frustrating experience. For whatever reason, they wanted us to wait until the beginning of June. I was not happy about that but no matter how demanding I got, the nurse and receptionist refused to schedule the appointment any sooner. The urologist had also not gotten us a referral to an oncologist yet either. I was not going to let them drop the ball and push us off like that so I immediately called IU and did a self-referral. They got back to us just two days later and we had an appointment with Dr. Einhorn himself on Tuesday (5-3-16).

                  Dr. Einhorn did bloodwork right away and thankfully, all of Matt's tumor markers came back normal. His tumor was 60% embryonal carcinoma and 40% yolk sac with vascular invasion. Dr. Einhorn explained that we had 3 options... Surveillance, RPLND, or 1 round of BEP chemo. He said that there is a 50% chance of recurrence at this point. What are your opinions on what we should do? I feel that RPLND is the best option because I worry about the long term effects of chemo and I would like to avoid it if at all possible. Fertility is also a concern with the chemo. Matt is very undecided still and it is, of course, his decision.

                  Mallory

                  Comment


                  • #10
                    1xBEP has a low risk of impacting fertility long term. And I'd have assumed that Matt woild have already banked some sperm..

                    RPLND has some potential long term side effects too, and can also lead to infertility, so it's a difficult choice. I personally went for the adjuvant chemo, even though I had a lower chance of recurrence than your husband, as I didn't see surveillance with that risk level working well for me, and I wanted to avoid 3xBEP. Your husband will need to make his own choices based on levels of risk aversion and life circumstances.

                    All the best,
                    - T
                    30 Jul 14: Discovered lump
                    31 Jul 14: GP referral to specialist
                    4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
                    8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
                    29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

                    24 Sep 14: Started precautionary adjuvant 1xBEP
                    23 Oct 14: All clear; on surveillance

                    Comment


                    • #11
                      I'm curious to know what Einhorn's thoughts were? Did he sway one way or the other? I suspect he was pro-surveillance as that's been his recommendation for several others who have stage 1b non-seminoma. I'm curious to know what his thoughts about an RPLND or 1 x BEP are. An RPLND done by Dr Foster could be a good choice. That way you can really see if your husband really requires BEP. If he has nodes that are positive, then BEP may be required. If he has zero nodes positive, it's highly likely that he will not require BEP. 1 x BEP will almost certainly not affect his long-term fertility. 1 x BEP brings the relapse rate down significantly.
                      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


                      • #12
                        We haven't done any sperm banking yet because the urologist here kept telling us that he would get us info about it later and then never did. Dr. Einhorn didn't really give an opinion on what he thought we should do. He did say that he would be concerned with the long-term effects from chemo. I also asked him about the risks associated with the RPLND and he said that if we have the surgery done there, the risks are almost non-existent. He said that the surgeons at IU have an over 99% success rate of the surgery with no complications. He even went so far as to say that they don't recommend sperm banking before the RPLND if done at IU because they have such success with the surgery that it is not needed.

                        I think Matt has tentatively decided on the RPLND but I still welcome any opinions or insights either for or against that option as his decision is not yet set in stone.

                        Comment


                        • #13
                          To me, with Dr Foster or one of the expert urologists at IU on board, I'd lean towards RPLND, with the hope that no chemo would be needed, but also realizing that it is certainly not uncommon for some chemo to be needed after RPLND. Or you can just go straight to 1 x BEP. I would not do surveillance given the high risk of relapse.
                          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


                          • #14
                            Mallory - I'm sorry to hear about your circumstance, but rest assured that you're in good hands with the team at IU. I had my RPLND under Dr. Foster at IU exactly one year ago (tomorrow, 7 May). While I would highly recommend sperm banking just in case, they're absolutely right on the statistical analysis of their success. I spoke at great length with Dr. Hanna and Dr. Foster about my options and decided on the RPLND. I felt very at ease with Dr. Foster and would choose the surgery over chemo again and again. As you said, their primary concern was potential overtreatment with chemo. Additionally, one fact that is not often mentioned is the significantly more complex nature of the RPLND if performed after chemo. The chemicals turn lymphatic tissue into a sticky tar-like substance that attaches itself to surrounding healthy tissue. This is what often leads to the increased risk of infertility, chylous ascites, aortic dissection, and other side effects.

                            Feel free to contact me at dcnovatransplant@gmail.com if you have any specific questions about the surgery, logistics, etc.

                            Chris
                            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


                            • #15
                              I would not do surveillance. I know the argument for surveillance, but if you guess wrong, then you will be face with full-dose chemo. RPLND or 1 x BEP is what I would do. With Foster on board I would lean towards RPLND. The only problem is that there is not a insignificant chance that you will also require chemotherapy, and more than the 1 x BEP that you can do now. 1 x BEP will not turn your lymphatic tissue to tar like substance though, but 3 x BEP will (according to my Urologist).
                              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

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