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25cm stage IIIB retroperitoneal seminoma

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  • 25cm stage IIIB retroperitoneal seminoma

    I’ve been diagnosed with stage IIIB seminoma with a 25cm tumor (yes, 25cm!) in a right retroperitoneal lymph node. I’m currently undergoing 4xEP for treatment.

    I went into my PCP in May after experiencing what I thought were gastric/digestion pain and weird random pains when exercising. Weight loss was a slight concern because of reduced diet from the discomfort, and my stomach started feeling hard.

    Initially thinking I had an ulcer and possibly diverticulitis, my doc proceeded conservatively. But after a couple of weeks and same symptoms, I was sent in for an ultrasound.

    That was probably the worst day of my life. At 7:30am I was doing a routine ultrasound. By 1:30pm I was back doing a ct scan. By 4pm, my doctor was reading the radiology report to me after asking me to come in. It was probably sarcoma.

    Given that I live within driving distance to MD Anderson in Houston, TX, one of the premiere facilities for rare cancers like sarcoma, that’s where we headed. After a week of wrangling insurance so we could get in, we saw the sarcoma doc and scheduled a biopsy to figure out what exactly we were dealing with.

    It took about 3 weeks from the radiology report until we found out the results of the biopsy. It’s seminoma! This probably sounds weird to most on here who have a similar diagnosis, but we celebrated. It was a survivable cancer, not an ugly cancer like many sarcomas that can only be recessed and recurrence is high (thus quite low prognosis).

    My first round of chemo was done inpatient, and it was rough. I dunno if it was because of the size of the tumor (and the fact I had severe nausea before even starting chemo) or because I was taking Reglin (which I later found out doesn’t agree well with me) or because I succumbed to the fatigue and nausea rather than combatting it with moving around and forcing myself to eat, but I spent several days laid up in bed, plus a 5-night stay in the hospital for neutropenic fever.

    I’m currently on Day 15 of my 21-day chemo cycle (round 2) and doing immensely better. My appetite is back, I've managed to stay out of bed for the most part, and I'm feeling strong. I also managed to keep neutropenic fever away.

    My biggest takeaways so far are:

    1. Chemo works really well. I could literally feel the tumor squashing my organs and my stomach before round 1. After round 1, I felt no sign of the tumor (obviously it’s still there, but has shrunk considerably). My appetite recovered completely and I’m eating like a NFL linebacker.
    2. Chemo has terrible side effects that can be managed as long as you stay on top of things by staying out of bed, going for short walks, and really managing your diet. Eat a lot and drink a ton of water. EP is tough with all the hydration/water, especially inpatient where they just pump you full of liters of water intravenously, but I just kept drinking and eating and my side effects are so much better.
    3. Neutropenic fever is a crapshoot. While I’m sitting here feeling great, I started running a low-grade fever when the Neulasta shot kicked in (around Day 12 of my cycle, 7 days after the shot was administered). To me, neutropenic fever is the worst, because it means an automatic 48-hour stay in the hospital if not longer.
    4. Simply thinking about a hospital food tray makes me nauseous.
    5. Speaking of Neulasta, the pain has been intense, but only lasted for about a day. My hips and lower back were spasming for about 14 hours.

    I’m going to try rounds 3 and 4 of my EP treatment outpatient, and would love to hear if anyone has any experience or tips for handling EP on an outpatient basis (besides drink tons of water!).

    Good luck to all of you going through similar situations and thanks for allowing me to share.

  • #2
    Almost ALL of us here in the US have our chemo (3xBEP or 4xEP) outpatient. It should be easily doable. Just stay within easy reach of your doc/hospital in case something suddenly changes.

    - Matt
    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
    March 13th: Left IO 100% Classic Seminoma
    6.3 x 5.1 x 3.8 cm, no invasion of anything
    LDH never fully normalized
    Stage: IS
    Watchful Waiting
    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
    May 12th: started 3xBEP
    Neupogen during Cycle 2 and 3
    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
    August 4th: Post Chemo CT/PET scan
    September 4th: Port removed
    July 10th 2018: 4 YEARS ALL CLEAR !

    Comment


    • #3
      Check your Private Messages....I sent you one.

      - Matt
      March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
      March 13th: Left IO 100% Classic Seminoma
      6.3 x 5.1 x 3.8 cm, no invasion of anything
      LDH never fully normalized
      Stage: IS
      Watchful Waiting
      May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
      May 12th: started 3xBEP
      Neupogen during Cycle 2 and 3
      July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
      August 4th: Post Chemo CT/PET scan
      September 4th: Port removed
      July 10th 2018: 4 YEARS ALL CLEAR !

      Comment


      • #4
        Best wishes as your move forward in your treatment. My 18 year old son had a 15 cm retroperitoneal tumor last summer. Treatment went well and he was able to attend college in the Spring. We have another CT scan scheduled next week. Fingers crossed!

        Comment


        • #5
          Thanks Matt and Mick for the replies, and glad to hear both of your situations are going well!

          Mick, one question if you don't mind me asking, did your son have pure seminoma? Also, besides the retroperitoneal tumor, did he have any occurrence on one or more testicles? If so, did they remove it, and was it removed before or after chemo?

          Just asking because I had an occurrence on a testicle as well, but I was dealing with really severe abdominal pain. Because of this, my doctor opted to start chemo first, but said we need to figure out what to do about the testicle afterwards. Obviously I'll do whatever he recommends, but not sure what standard practice is for these large retro tumors.

          Best of luck to your son Mick, and Matt to your 4 years of living cancer free!

          Thanks,
          Dustin

          Comment


          • #6
            My son did have pure Seminoma and like you had severe abdominal pain so we went to the ER thinking appendicitis or something along those lines. He had his testicle removed prior to chemo and opted for a testicular implant post chemo.

            Comment

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