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  • My Story So Far.....

    Hi, i've been reading this forum on and off since January this year from the day i suspected i had TC. I decided to register and post my story mostly just to vent and get out my concerns and worries......

    For me it all started about 5 weeks prior to christmas. I went to work just like any normal day feeling fine and healthy. However after lunch i didn't feel quite right my stomach was gurgling and i had a bad bout of diarrhea followed by my first ever panic attack. I simply put it down to something i ate that hadn't agreed with me, but the anxiety wouldn't pass. Over the next few days my stomach/bowels hadn't settled and i was suffering severe anxiety, convincing myself i had a variety of things from bowel cancer, stomach caner to brain tumours. As this part seems to have little relevance at the minute i'll cut it short, basically i suffered for the following 5/6 weeks constant and relentless anxiety and depression, it simply wouldn't go away and I was buzzing none stop.

    After christmas i returned from my Fiance's (we'd got engaged at christmas) and I was sat at work with my hand in pocket having a scratch and a feel as men sometimes do. Something didn't feel right though, it felt harder than i'd remembered it being in the past. Having lost the other testicle when i was 4 as it had failed to develop i had nothing to compare it to. With the levels of anxiety i had been having over the last 5 or so weeks anyway this set me off into an almost constent state of panic, and i decided to book an emergency appointment with the doctor. As with the stomach problems i'd convinced myself it was cancer but truth be told i didn't really think it would be but felt i needed the consultation to set my mind at rest.

    I went to the doctors and she had a good old feel around, umm'd and arr'd and decided that she wasn't qualified enough to make a final diagnosis and that i would be best seen by a General Surgeon (er why??? Urologist you mean surely?). Due to the unique way the NHS is funded i wouldn't get to see this consultant for a further 4 weeks. Well as i was already bouncing off the walls there was no way in hell i was gonna survive 4 weeks of not knowing and took in on myself to book a private consultation in 3 days time.

    Tuesday came for my appointment and off we went, the consultant had a good feel and i could immediately tell on his face that he knew it didn't look good, he aranged an immediate ultra sound scan that afternoon (again privately) and a further consultation that evening to discuss the results. Obviously the radiologist confirmed that it was suspected TC, sufficiently enough that an appointment was made to see a Urologist 2 days later who booked me in for the operation a week later.

    Again i'm waffling so i'll speed it up, operation went fine and i had the usual biopsies, blood work, chest X-Ray and CT scan before being past onto the Oncologist. The bloody work showed raised levels of b-HCG and AFP and the biopsy confirmed a teratoma (in the UK this is a broader term that includes all none-seminoma cell types, but i can't remember the exact break down).

    From what i can remember of the pathology report it showed that tumour was indeed teratoma with 2 or 3 cell types (i think yolk sac was one of them and i don't think choriocarcinoma was in there), with no sigs of vascular or lymphatic invasion (this I assume is a good thing). The post op CT-Scans, X-Rays had come back clear, and the tumour markers had dropped to 'normal' levels. He classified it as Stage I teratoma and was happy enough with the pathology report, scans and further blood work to suggest the best treatment here on in was simply surveilance.

    Since then i have had a further CT-Scan and a few more blood tests, all coming back clean and i am now 5 months since my operation. I am due another visit this monday with the oncologist. Also has i now have no testicles what so ever i have under-gone testosterone replacement therapy starting with patches and now moved onto Nebido injections.

    So you'd think i'd be feeling pretty good about it all, i'm getting TRT (a fight i know many have to go through to get) and things, as far as they keep saying, look good in terms of my prognosis.

    Unfortunately not, 2 weeks ago i started again with constant signs of anxiety and depression, my stomach and bowels are all over the place (having had this checked by a gastro it is mostly likely related to the stress and anxiety) and i have 100% convinced myself that my cancer MUST have returned. It simply seems to me far too much of a coincidence to have suffered that bout of anixety prior to discovery the lump and cancer for it not to be related in some way (although no doctor has confirmed it is or isn't) and hence i've now convinced myself that if that's back so must my cancer.

    As i say i don't have much of a point to this post other than to vent as i'm sat at work unable to concentrate on what i should be doing and instead thinking about how much i don't want it to return.

    It seems that after every visit i forget everything the oncologist has said and can not remember how likely it is that MY cancer will return, i don't know if it was a typically fast growing type of TC or not, i don't know how relevant the vascular/lymphatic invasion results are in determining the likely hood of it returning.

    To be honest i just want it to be gone and for my moods to get back on track so i can get on with enjoying life like i should, i mean surely i should be pleased the initial results when i was diagnosed could have been far far worse, so why am I concentrating on the dark side all the time.

    Anyway, sorry for waffling, and thanks for reading (if you're all still awake).

  • #2
    Schtopper:
    Your anxiety is quite understandable and quite normal. The stomach thing is most likely just a coincidence but with your history I can see how you would make the connection. Can you cancer come back? It sure can but the odds are very low and your on close surveillance so it shouldn’t get to the point where it’s not treatable. Have had good scan and blood work is a great sing that nothing is going on. Remember you have a great safety net with the chemo if it should ever be needed. Be sure and check back to let us know what your doc has to say.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment


    • #3
      Yes i am not 'too' worried about the bowel or stomach problems, at least not in a sense of their being something wrong. I have had just about every test done to check my entire digestive tract and all came back clear.

      What i do worry about is this constant anxiety/depression and 'buzzing' feeling. When i wake in the morning i'm restless, my legs feel like jelly and my heart rate starts to increase (over a year ago my heart rate was just over 40bpm when first waking up). These symptoms are just too similar to what I experienced prior to christmas and i can't say i've really had them since then until 2 weeks ago. I can't get it out of my head that this HAS to mean the cancer is returned, maybe my bHCG levels are high again and that's what's causing these symptoms.

      I guess it's normal once you've started to get stressed to worry about everything, i find myself questioning the 'treatment' i've had. Should the oncologist have done Adjuvent chemotherapy just to be sure? Should i have had RPNLD (not something they do in the UK really)?
      When i asked my oncologist on the first meeting why i wasn't haivng nay chemo he simply replied that the risk of spread from what i had (i'm guess due ot the normalised marker levels, and no signs of either invasion in pathology) was so low that to expose me to chemo could do more harm than good if there was no reason for it. It also added that it wouldn't make much difference anyway it would either be 2 doses of chemo now, or 3 doses of chemo 'should' it return. I just don't feel i've been treated for cancer, to me it should be something that's a real fight and not solved by a simple half hour operation, with that i can't stop thinking that the fight isn't over, that it IS going to come back and I still may not survive.

      This last 2 weeks have been a nightmare and i've been hell to live with for all those around me. I just have a bad feeling about things :/

      Comment


      • #4
        Even if it's not IBD or IBS...which if you have been tested from head to toe (or head to butt) it may not be.....panic attacks sound likely and are treatable. Talk to your doc and see if he/she will prescribe something either for the attacks or the underlying depression.

        Can you get your path report and post the determination of types and %? That will help us help yu with symptoms of a possible recurrance. I honestly think you are dealing with anxiety.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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        • #5
          I won't be able to get the path report or percentage mix until i go back to the oncologist on Monday, i was offered a copy of pathology report by my urologist but i decided against as i was over analysing stuff and thought it would only increase my anxiety. I guess i'll know by monday whether it's back or not anyway as i should have my blood tests back by then.

          All I can remember was that my AFP and bHCG were high pre op and then returned back to normal levels post op and have so far remained ok.

          Should my HCG and AFP be 0 by now as i have no testicles at all and i don't know what part of the body would produce them naturally.

          Comment


          • #6
            Originally posted by Schtopper
            Should my HCG and AFP be 0 by now as i have no testicles at all and i don't know what part of the body would produce them naturally.
            No, not all the way to zero. AFP is normally less than about 5 ng/mL, and hCG level is normally less than 5 mIU/mL.
            Scott, [email protected]
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


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            • #7
              Does anyone know what produces the natural levels of AFP and bHCG then? I had assumed it was the testicles (although I have nothing to base this assumption off), which had me wonder if mine should be 0 not having any. If not then cool i'll try and stop worrying about that, i know both my AFP and bHCG have been below 5 since the operation.

              Comment


              • #8
                Schtopper -

                I have to agree with Karen that it does sound like a mild anxiety disorder; sometimes things just happen in conjunction with each other but are separate (i.e. you noticed tc symptoms while you were having stomach/panic issues). It would also make sense that now that you've been through this, the anxiety condition is more to the forefront because now you're worried about your future health. It is all normal, especially with what you've just been through, and your doctor can help you with it.
                Rob and Stacy
                DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

                Comment


                • #9
                  Appointment day today and i'm bricking it, this is probably the most nervous i've felt before an appointment since my operation. Don't know if i'll get any results today i did have some blood tests taken last wednesday but they may not be back. Trying my best to think positively anyway.


                  EDIT: Just phoned the hospital i had the blood test done at to see if they were back and they are. b-HCG level is <2 and AFP is 1. I have informed my oncologist's secretary that the results are back and she is phoning the hospital to get them passed onto my oncologist so we can discuss them this afternoon.
                  Last edited by Schtopper; 07-02-07, 07:41 AM.

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                  • #10
                    Congratulations on your completely normal blood test results!
                    Scott, [email protected]
                    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                    Comment


                    • #11
                      Schtopper...great blood work!! You are on your way for sure, hope it eases your anxiety.

                      m
                      Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                      Current DVT
                      Current testosterone replacement therapy, Testim.

                      "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                      Comment


                      • #12
                        That's amazing news on the bloodwork... hope its enough to calm your nerves!!
                        Rob and Stacy
                        DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

                        Comment


                        • #13
                          Yeah thanks guys, I had a long chat with the oncologist yesterday and I am feeling a lot better today. They've given me access to a testicular cancer nurse that i can ring at any time to discuss any fears or concerns or to discuss results as and when they come back. Had another load of blood tests done (don't really need them as i had some last week but they won't let ya book in there till ya have ya bloods done) and a chest X-Ray.

                          I tried to ask about my pathology report but they don't seem to list percentages of the make up, all it states is that the major component is Yolk Sac, there is some Embryonal and some 'mixed differentiate' (i have no idea what this means and haven't seen it mentioned before).

                          They've also given me the details of a centre near the hospital that is aimed at helping people get through cancer and coping with life after cancer, giving an inital evaluation and then deciding on the best form of therapy for you, be it hypnotherapy, counseling, reflexology, pretty much any form of therapy you can think of. So i'll give them a call this morning and see how we go on.

                          At least now i know that the past few weeks of anxiety were not my cancer coming back but more than likely just anxiety, it may well be that i've been suffering an anxiety disorder for some time and this i need to work on.

                          Thanks for all your comments and help.


                          PS Have you had your testosterone levels checked ?
                          Yes i was started on andropatches pretty much straight after my operation as my testosterone levels were 7 post op (7 what i don't know), and have recently moved onto Nebido injections the second of which i had last week, my levels are now 32 at last count.

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                          • #14
                            Schtopper...I am so glad you have a TC nurse to call. I could have used one of those from time to time...you just never know when you will have a question that needs answering.

                            Thinking of you and hope you find some help with your anxiety. Cancer can cause anxiety in some of the most emotionally stable people...but for people that are prone to anxiety anyway, the threat of cancer can send them to the moon. I for one have always been a high strung, kinda of anxious personality. Sitting in that office waiting for them to stage Boyce, I felt like I was going to peel my skin off. Seriously, I was a mess. And the worse the fear got that something terrible was going to happen to him, the worse I felt physically and mentally. It is a scary time for everyone. You have been through a big event and talking that out with someone will serve you well now and also help smooth out some bumps in the road for your future.

                            Let me know if you need someone to talk to.

                            Margaret
                            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                            Current DVT
                            Current testosterone replacement therapy, Testim.

                            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

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