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  • Feeling Like Giving Up

    I am writing this post to vent, as I can not talk to close family member about it as they really can not deal with it emotionally.

    History: Last July I under went a left I/O (mixed embryonal carcinoma (approx. 65%), yolk sac (approx. 30%) and choriocarcinomatous (up to 5%) elements), and started surveillance. In December I started EP x 4, which I finished up in Feb of this year.

    My latest scan (3 weeks ago), a CT/PET , showed a lymph node ( >2cm) in the retroperitoneumthat is hot but my tumor marker are within the normal range.

    My medical team are not showing any urgency in getting me into surgery. I know my odds of survival are really poor but the feeling like my doctors have given up on me and are not moving faster because of this, is really getting to me.

    And to top it off I have started experiencing pain in my remaining testicle that reminds me of the pain I had in my left testicle before it was removed, and I think I have found a lump.

    I just don't know if I can keep going on.

  • #2
    Neal, why do you feel your chances are poor? If your medical team has given up then you need a new team!!!!! Life is too important to play the odds and people BEAT the odds every day!!! You CAN go on by getting up tomorrow and finding something positive in the day. Go to a religious service and ask for help or reach back out to someone in your family. Call a neighbor or a friend you can lean on. You need some survivor advice from this group and I know they'll say HANG IN THERE! As long as you're alive...there's hope. I'm thinking about you and will check back with you tomorrow. xoxo

    Comment


    • #3
      Hi Neal,

      Feel free to vent away as we understand that others that have not been affected by the disease may not be able to fully understand the emotional sides.

      As far as your care. Unless I am missing something the information that you are presenting means that you have a very good rate of survival. You are from Ireland right? Where about do you live? Are you near Dublin? I am not sure who you are seeing but there are still plenty of options as far as your care and I am more than happy to help you in understanding all of this. You can drop me an email too at mike[at]tc-cancer.com if that is easier.

      Having more details will help as well. Were your nodes gone after EP and this is a new node? Where exactly is it located? Have you considered getting another scrotal ultrasound if you are thinking you are having a lump?

      I know that it is a stressful time and I am sorry that you team is failing you in making you fully understand things but you can get through this physically.

      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

      Comment


      • #4
        Originally posted by Neal View Post
        I am writing this post to vent, as I can not talk to close family member about it as they really can not deal with it emotionally.
        You've found the right place.

        Originally posted by Neal View Post
        My latest scan (3 weeks ago), a CT/PET , showed a lymph node ( >2cm) in the retroperitoneumthat is hot but my tumor marker are within the normal range.
        So tumor markers are useless. There is some controversy about using PET with non-seminomas, but a over 2CM node is concerning without the PET showing it's "hot"

        Originally posted by Neal View Post
        My medical team are not showing any urgency in getting me into surgery. I know my odds of survival are really poor but the feeling like my doctors have given up on me and are not moving faster because of this, is really getting to me.
        Surgery is probably not the route likely to be taken in your case. Second line chemo is more likely, as I understand it. Surgery might miss micro mets that could send you for yet another go-round

        I doubt your docs have given up on you, more likely they are unsure how to proceed. Consider emailing Dr Einhorn or getting them to, he will likely be able to provide an appropriate path forward.

        Originally posted by Neal View Post
        And to top it off I have started experiencing pain in my remaining testicle that reminds me of the pain I had in my left testicle before it was removed, and I think I have found a lump.

        I just don't know if I can keep going on.
        The odds are really low, but get this checked ASAP, chances are it's nothing but your mind working against you, but rule it out for peace of mind. Insist on an U/S.

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

        Comment


        • #5
          Second line chemotherapy seems like a long shot. For example this study, http://theoncologist.alphamedpress.o...t/12/1/51.full, says

          "Second-line conventional-dose or high-dose chemotherapy with stem cell rescue may cure 25%–50% of patients"

          I don't see how it can be viewed in an other light when second line chemotherapy has as much chance of working as a coin coming up heads.

          If surgery is not the right than, chemo is more than useless according to, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3230321/

          "While in most malignancies, refractory or relapsed disease that is not both localized and amenable to surgical resection is considered incurable"

          It is a different node than before. It is located on my left side not to far from the liver.

          Comment


          • #6
            Not having the support you want really sucks!! Getting in touch with other experts and seeking second opinion may be the best way to go - your oncologist should walk you through the available options… All this cancer stuff really messes with your head, but just get your other testicle checked out ASAP - I just had been sore in the remaining one and after lots of worrying and feeling weird it turned out to be epidimytis, an infection of a tube leading to the testicle so antibiotics for 3 weeks but no cancer!! Getting it checked out is key, get to your urologist if you can

            Comment


            • #7
              You need to seek the experts ASAP. There is still lots of hope. There are also many details missing from what you wrote. It could be something as simple as a leftover teratoma that just needs surgical removal, although I don't know that they would show uptake on a PET scan. There have been folks on this forum in worse cases than yours that have recovered and been disease free.
              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!
              9/18/2017 all clears up to this date!

              Comment


              • #8
                Originally posted by Neal View Post
                Second line chemotherapy seems like a long shot. For example this study, http://theoncologist.alphamedpress.o...t/12/1/51.full, says

                "Second-line conventional-dose or high-dose chemotherapy with stem cell rescue may cure 25%–50% of patients"

                I don't see how it can be viewed in an other light when second line chemotherapy has as much chance of working as a coin coming up heads.
                This article was published in 2006. Since then there has been more data released on prognostic factors for relapsed disease after cisplatin-based chemotherapy and from what I can gather from your posts, you do not appear to have high risk prognostic factors.


                Originally posted by Neal View Post
                If surgery is not the right than, chemo is more than useless according to, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3230321/

                "While in most malignancies, refractory or relapsed disease that is not both localized and amenable to surgical resection is considered incurable"
                The part that you quoted spoke of other cancers. If you continue with the sentence it reads: "While in most malignancies, refractory or relapsed disease that is not both localized and amenable to surgical resection is considered incurable, a significant proportion of such patients with GCT can still be cured with either salvage conventional-dose chemotherapy (CDCT) or high-dose chemotherapy (HDCT) plus stem-cell rescue with or without adjunctive surgery in the 2nd- or even 3rd-line setting."

                I would contact my doctor and see what the next steps should be. I would also ask them to contact some testicular cancer experts, such as Dr. Einhorn as previously mentioned, and a list is kept my our friends at the TCRC at: http://tcrc.acor.org/experts.html

                There is a clinical trial in Dublin right now just for this type of situation as well https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn

                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

                Comment


                • #9
                  Neal, you need to heed the advice of these men, they know what they're talking about. Your journey isn't over but you are by no means hopeless. You need to pull yourself out of this spiral and start looking for ways to get going on your journey again. Don't waste any more precious time researching old studies! Concentrate on taking steps to keep LIVING!!!!

                  Comment


                  • #10
                    So sorry you are feeling this way. Please follow some suggestions as MamaANG also advised.
                    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.
                    6 months Cancer Free

                    Comment


                    • #11
                      Hi Mike,

                      My Oncologists sub specialty is testicular cancer, and finding somebody else who does specialize in testicular cancer in a country my size would be very difficult, but I have contacted the person involved in that study.

                      I have been experiencing back pain for the last few days so I contacted my nurse specialist in regards to it. During my conversation with her, she said that my oncologist said surgery is my "best hope" (no other phrase has ever made me feel so bad). Yet my surgeon does not think there is urgency in the matter.

                      AFP has is still within normal range, but has rising in the last 4 weeks (5 to 7). I was told that my hCG is the normal range.


                      I appreciate you comment of encourage, but I have seen to many of my family member die of cancer to want to drag it out till the end.


                      P.S.

                      Does anybody else experience the error Invalid server response. Please try again. continuously?

                      Comment


                      • #12
                        Hi Neal,

                        I am glad to hear that you have reached out to the study physician. I am not that familiar with the doctors in your country but think the study physician is a great place and if you have any issues getting a hold of them, then let me know.

                        I too have lost family members to cancer and I spent over 20 years working in hospitals so I know the toll cancer can take on the human body. I also know that testicular cancer is different than most any other cancer and while others may be treated to add an extra year or two to life or even months for that matter. The treatments that you would receive have the goal of being curative. While they might not be a fun experience, there are many yeas of life after them to make up for it.

                        Be sure to mention your back pain to your consultant too as it may make a difference in choosing your treatment options of surgery vs. chemotherapy.

                        As far as the server issue, these forums are an old technology and have their glitches. You can see if clearing your browser cache helps. Many times it says invalid response, especially if taking a bit to do your post, but then it still posts your posts.

                        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

                        Comment


                        • #13
                          Neal,

                          I understand the feeling of your doctors not seemingly caring about your diagnosis. Just yesterday I spent over 2 hours on the phone arguing and trying to get information about why it took over a week to have the PET/CT scan that was ordered to be denied, only to find that a CT scan was immediately approved. This all occurring after my oncologist left the office before I got there. Since then I've barely been able to get a hold of him to discuss how we are going to be moving forward with my appointments.

                          You need to fight those feelings because you are worth more then what and how your doctor is making you feel. He/she may not be doing it intentionally as they are likely busy as well, however you need to keep pressing and asking the questions that are needed to get the information and priority needed. You can do this

                          Comment


                          • #14
                            hi Neal

                            Feel free to vent. To us or to anyone. Those who like / love you will tolerate this.

                            Man, its about YOU now not about the feelings of other people. Its perfect time to be selfish a bit.


                            I think you should not feel so desperate at this stage.

                            (I admit I was even more desperate during my chemoterapy as I developed symptoms (probably due to fibromyalgia) that resembled CNS mets / leptomeningual disease and I was sure I was going to die in months.)

                            If its one single lymph node with normal markers then chemo + surgery can easily be curative (i would say the cure chance is WELL above 50% with normal chemo and even higher with high dose). Mind you, among the people with recurrences you have people with brain mets, liver mets etc. and extreme markers ..

                            It is also possible that this is teratoma only as your marker is normal or only slightly elevated (7). However, teratoma is not "hot" normally on PET CT.

                            If I were you, i would:

                            - try to talk to a psychologist and talk more to friends , family
                            - Ask the radiologist if he thinks it can be a teratoma
                            - Ask the surgeon why it is not an urgency in his view, how can we ensure this does could lead not further mets. whats his plan.
                            - check with Einhorn (via mail) if he suggests surgery + chemo, or chemo + surgery,... if its teratoma only it can be surgery ONLY..so i think he would suggest surgery + chemo. this way you understand what the tumor actually is before progressing to chemo.
                            - Ask ASAP the oncologist what exact plan he has.

                            Last but not least: it is possible that this is not a recurrence but an infection. it is unlikely though.

                            hope to hear back from you.

                            sanis

                            Comment


                            • #15
                              Hi Neal, I totally understand the pain in the other testicle. The day I went to meet my oncologist, I was so nervous I thought my remaining testicle was about to explode. When the nurse took my blood pressure, he asked why I was so nervous....I don't think he read my chart! Like others have mentioned, get your oncologist to Email Dr. Einhorn and consult with him. You'd be surprised how quickly they'll get a response. I kid you not he is an angel. There are others on the board that had it so much worse but they made it out of the rabbit hole, you will to.

                              Comment

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