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  • Husband is one month clear.. nervous of recurring side effects

    Hi all! My husband was diagnosed in August 2017 with stage 2 pure seminoma with enlarged lymph nodes in retro. Orcheictomy completed August 2017.. Completed 3 rounds of bep x 3 December 2017. Got the all clear in January 2018 that the large lymph nodes are no longer visible and pet scan showed clear. My husband is 29 years old, stomach has been feeling a little weird/ crampy similar symptoms (not fully) of what he had prior to chemo. He goes back for his blood work and check up March 14th but in the meantime am a little nervous of recurrence (could that be possible so soon?) I also should add my husband had a lot of stomach issues prior to chemo, certain things he ate would bother him etc and also stomach issues during chemo (bad stomach aches from all the meds and throwing up) wondering if anyone else has anything similar? Could we be just over reacting.. is this normal? Anyone else feel like every ache and discomfort is a cancer now?


    Thanks in advance...

  • #2
    Stomach issues during chemo is very common, one of the main side effects of the drugs.

    Pretty much everyone has these nervous feelings around or between checkups, especially in the beginning. Psychosomatic issues also crop up, one feels every little ache and pain and is always worried about relapse. Don't sweat it, statistics say that your visit will go well and that his symptoms are either in his head, or from something else entirely. I know about half the time all my aches and pains go away the day after my good checkups!
    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!
    3/29/2018 all clears up to this date!

    Comment


    • #3
      Thanks so much! That’s very reassuring. God bless you and fingers crossed for always great check ups!

      Comment


      • #4
        Originally posted by Jackmandy919 View Post
        Anyone else feel like every ache and discomfort is a cancer now?.
        This forum is full of folks who worry about every ache & pain.

        With his prior history of stomach issues, this is most likely just a continuation of them, or, as biwi suggests, pre-checkup nerves.

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

        Comment


        • #5
          So normal to be nervous after treatment. It does mellow with time, per my son.
          Son Grant
          dx 12/21/16 at age 17

          BEP x3
          Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
          2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
          Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

          Comment


          • #6
            I have a scan coming up in a couple weeks and I also feel quite nervous. Stress though can tense muscles and cause pain and a lot of other ailments. Stats are In Our favor. I was worried about something on my last CT scan and sent it to Einhorn and he said “This does not sound concerning. You are almost certainly cured.” I just need to listen to him and not my anxiety lol. I freaked at the word “almost”, but my rational side told me he said almost because if it was certain no one would ever need follow ups so it’s as close to certain as he could be. Just trust in the stats!
            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!

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            • #7
              I think it's normal to think everything is a sign of trouble - after all, this is pretty traumatic experience you're going through!! My stomach settled within a few months after chemo and regular exercise, even if only a long walk every night, helped me a lot. Also, starting one or two personal projects that I'm really passionate about helps to take mind off things too! Anything on the to do list, anything your husband might have been putting for later?
              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

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              • #8
                Hi everyone! Thank you so much for your reassuring words as well as personal experiences. We are finding it gets a bit better with time. We are now going on to 3 months of good news, my husband just got his second scan since chemo has been finished, ct scan came back as clear of no more enlarged lymph nodes just some scar tissue. A new finding though which the dr didn’t seem to concerned and she made sure she stated it as well. There’s a small spot they saw on his lung about 1.5mm she asked if he had a cough or anything.. he said no just allergies. She said we can wait 3 months for the next scan or we can order a pet scan since now the insurance will approve and get it taken to rest assure our mind. But now I’m worried about it......hard not to be! She said it could be a blood vessel etc. anyone’s inputs? Thank you so much.

                Comment


                • #9
                  Also if and when this comes back as nothing we will be schedule for his port to come out

                  Comment


                  • #10
                    Lung spots are actually more common than you'd think. We've had lots of guys in here report thay had spots but they only rarely cause problems.Lungs are tricky.

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

                    Comment


                    • #11
                      Thanks davepet soooo much for the quick response! The doctor didn’t seem concerned at all, but we are going to go for a pet scan for pre caution than we will schedule for his port to come out. He always did have a head cold 2 weeks ago and allergies now, so praying this is nothing of too much concern!

                      Comment


                      • #12
                        It's hard not to worry but you have a plan in place so hopefully it's nothing! Best of luck with it
                        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


                        • #13
                          Yup, very unlikely to be anything. I think the experts would say you don't even need the PET scan, just continue on to your next checkup in 3 months.
                          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!
                          3/29/2018 all clears up to this date!

                          Comment


                          • #14
                            At 1.5mm what they are seeing in the lung is incredibly small and I would ask the doctors as it might be related to changes seen in the lungs after bleomycin. I personally wouldn't be too worried about it at all. Typically sizes closer to 1 cm are more concerning so it is really tiny and may be related to something completely different than the cancer. I am not sure why they would be doing PET over CT as CT scans are more than sufficient and maybe a follow up CT of the chest and if it is normal, a dedicated CT of the chest may not be needed either so I would ask about that as well.

                            Mike
                            Oct. 2005 felt lump but waited over 7 months.
                            06.15.06 "You have Cancer"
                            06.26.06 Left I/O
                            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                            06.30.06 It's Official - Stage I Seminoma
                            Surveillance...
                            Founded the Testicular Cancer Society
                            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                            Comment


                            • #15
                              Thank you so much for the reassuring words. You are absolutely right, but me being the wife I keep replaying back what the doctor said she wasn’t worried. But than the other part of me is wondering if she wasn’t worried than why the need for the pet scan?

                              Am I looking to much into it? Just another set back, because we are told once the pet scan comes back as clear he can get his port removed. I just called the doctors office to see if this pet scan got approved yet from insurance and she said not yet, so my mind is going all over the place!

                              Thanks everyone

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