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  • My story so far, and a question?

    Hi All,

    Great to find this forum.

    Basically a couple months ago I started to get some stomaches, nothing major, I normally would eat healthily the next day and it would disappear. Then a month ago, I felt a firmness in the right testicle. I gave it a week or so just to see if it would improve (silly me), then booked a GP appointment (I am from the UK). The waiting time was over a week, so I waited a bit, then decided that it was too far away so went directly to the hospital. This was last Wednesday (about 2-3 weeks after I felt the firmness).

    Fastforward and i've had an ultrasound and tumour markers etc, and on Monday the doctor said that he'll have to remove the testicle as it is most likely cancer. My operation is booked in for this Thursday. He said that from feeling it, it seems relatively small and the ultrasounds were positive in terms of it spreading (as far as they can be). He said one of my markers came back slightly higher than normal and one normal. At that time, I wasn't really in pain, only some slight chest pains which I think were stress related.

    Now it's Tuesday, and i've had my CT scan, results wont be till after my operation. My main question is that today I have started to get some back pain (lower right) and abdomen pain and on occasion pain in other parts of the body. I've read in a few cases that this could be just due to stress, but it's now stressing me more, thinking that it has spread quite a bit! I know it's different in every case, but is it likely that within a week I would get quite noticeable pains and it would spread that quickly, or could it be due to stress?

    My other question is UK related only, I have private BUPA insurance with work. Through the NHS (what i've done so far) it seems to be going quite quick (within a week i'd have had my blood tests, ultrasound, CT scan and operation). Is it worth looking at the BUPA route? Everyone i've asked so far has said it's going quickly so far so it's not worth it at the moment. I might look at my aftercare with BUPA potentially?

    (Long story I know, sorry about that!)
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

  • #2
    Sorry you had to join the club no one wants to be a member of. Welcome from another Brit.

    If the NHS is getting you seen fast then it is a bit of a toss up. I went private via my insurance, it probably saved me a few days here and there on the NHS but nothing much. I did benefit from a decent private room and nice food plus a bit more one to one care than I would have expected in an NHS hospital which I valued as I didn't fancy a ward full of blokes around when I came back from losing a nut! And appointments for everything were made at times to suit me, causing less disruption to family life which in the grand scheme of things is unimportant but is nice given the number of follow up bloods, scans, consultant appointments etc you will get through over the next five years.

    If you don't go private then check if your insurance offers an "NHS benefit" where they pay you a cash amount for a night spent in an NHS hospital when you could have gone private.

    And if you have critical illness cover then be sure to claim as soon as you have it confirmed that this is TC by the pathology results. It pays out on TC.

    Let us know how the op goes. And fire away with any questions. You are in the worst bit, the waiting for results of scans and pathology but you should know you will beat this, the cure rates are very very high.

    Comment


    • #3
      Yh I might look into private for after my operation if that's possible. Not too sure if I have critical illness cover tbh, but what does that do? My work are very flexible and have given me as much time off as I need.

      I will do, thanks for the reply. I'm hopeful on beating it, I don't even care about losing a testicle/hair etc, the only worry is being fertile as i'm only 24 and have no kids/wife etc yet. But, my view is that it is what it is, just need to make the most of it and do my best.

      Do you have any idea about the first part of my question?

      'Now it's Tuesday, and i've had my CT scan, results wont be till after my operation. My main question is that today I have started to get some back pain (lower right) and abdomen pain and on occasion pain in other parts of the body. I've read in a few cases that this could be just due to stress, but it's now stressing me more, thinking that it has spread quite a bit! I know it's different in every case, but is it likely that within a week I would get quite noticeable pains and it would spread that quickly, or could it be due to stress?'

      That's the most stressful bit at the moment tbh, and strangely today the pain has gone from my back and stomach and shifted elsewhere.. not sure if it is just my body dealing with stress.
      24 year old diagnosed 6/11/16
      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
      Pre/o CT Clear
      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
      Post-op CT with one enlarged lymph node - 1.5x1cm
      Borderline stage 2B/3B
      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
      CT and markers clear - in remission - 28/2/16

      Comment


      • #4
        To try and answer your questions -:

        Critical illness cover is a bit like life insurance but it pays out on diagnosis of major illnesses including cancer. I was lucky in that my wife had insured us both for critical illness as part of her flexible benefits package at her work and it paid off our mortgage. Might give you a nice deposit or lump sum to do as you please with? The reason I said to claim was we nearly didn't, it took a prod from my consultant to make us realize it would pay out on TC -that was nearly a very expensive mistake.

        Back pain can be a sign of spread BUT it is chronic pain not on off pain or just started pain as it is caused by a tumour growing big enough to press on nerves and other structures and causing chronic pain. I think your pains are a combination of stress and you being hypersensitive to any aches and pains at the moment, especially in that area.

        As for fertility, make sure you ask about sperm banking should chemo be necessary but the good news there is it is by no means certain you will need treatment over and above the orchidectomy. You need to get the op out the way then get your pathology results, your CT results and your post op blood markers and then you can work out what options you should be offered going forward. Depending on tumour type and stage, these may range from no further treatment, some adjuvant treatment to lower chances of relapse or a full set of chemo. If it is staged as stage 1 (no visible spread and no suspiciously high markers) then one option will be surveillance.

        Even if you need chemo, it often doesn't affect fertility but best to be safe and bank beforehand. Adjuvant stuff often doesn't even make your hair fall out.

        Post your results up here as you get them and we can help interpret your options.

        Comment


        • #5
          Hi Nish,
          I'll basically second MarkOne's comments. I am also from the UK and went private for my treatment. For me the two key differences were having a private room for my in-patient stuff, this was pretty big for me because I really didn't want to see a lot of (other) "ill" people - I just wanted to focus on me. The second was how my follow-ups were handled. I guess that because this was private, I got my bloods done a week "early" and my x-ray on the day of my appointment. This meant that when I saw my Onc' he already had the blood test results and had a chance to review my xray. So my appointment was actually "worth" something, because he could say whether or not my bloods and xray were clear - so no waiting.

          However the treatment is essentially the same, so your choice.

          I'll also second Mark's comments about critical illness. It paid off my mortgage.

          And lastly, all your aches and pains, are probably nothing. But your CT scan will help with that. Again, and certainly, post treatment - every headache, internal pain/whatever is very easy to attribute to cancer, or a relapse. In most cases they aren't related. Also in most cases any potential relapse/issue would be caught by following the protocol - that's what happened with my relapse (6 years ago now).

          It is easy to say, but try and relax. Have trust in the system. For most people TC is curable.

          Last question, just curious - where are you located/being treated?

          Take care, DZ.

          Jan 2009: RHS (Seminoma) & RT
          Mar 2010: LHS (Embryonal Carcinoma)
          Sep 2010: Relapse & 3 x BEP
          Mar 2015: Five years "nut free"
          http://doublezeroami.blogspot.com

          Comment


          • #6
            Hey guys, thanks a lot!

            I haven't got access to my benefits at the moment but sadly I don't think I have critical illness cover, it's an option which I didn't tick just as I couldn't really ever see me needing it short term. But i'll double check when I go back to work/have access. (Can you apply for this after your treatment if I am covered?)

            As for BUPA, I gave them another ring today, they're going to send over a form and early next week they'll start looking at my private care. So I think i'll try to do any follow up procedures with BUPA/privately, seems silly not to use it for that.

            I am at Whipps Cross down at Leytonstone. It's okay, but there is A LOT of waiting around.. silly amounts really, it's a joke. Luckily I am not too bothered but it does annoy me a bit. But I only saw I had BUPA after I first went to the NHS and by that time I thought i'd just carry on for now as I was going.

            I am less worried about the pains now, they have gone today completely and i've been re-assured by yourselves and a doctor that they are most likely just stress.

            Got my sperm banking penciled in for next week so that's sorted. Strangely I haven't really got any concrete results yet, to be fair I haven't asked for any actual numbers etc. I will do tomorrow though, they said that they'll go through my CT scan with me before the operation tomorrow, and i'll ask about tumor marker levels also.
            24 year old diagnosed 6/11/16
            Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
            Pre/o CT Clear
            Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
            Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
            Post-op CT with one enlarged lymph node - 1.5x1cm
            Borderline stage 2B/3B
            BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
            CT and markers clear - in remission - 28/2/16

            Comment


            • #7
              Whips Cross. Small world. I am a Woodford boy by birth, I worked at Whipps for several years in the mid 90's and hold a season ticket down the road at Leyton Orient (someone has to).

              If you are covered by critical illness then it is likely to have a time limit for claims, but you will have enough time to check it out. My policy had to receive the claim within 12 months of diagnosis I believe.

              To be honest, as long as the CT is clear then the most important result will be the pathology which can't be done until the nut is out and can be examined for tumour type. That will determine a lot of your options. Your age (or lack of it compared to me) means your more likely to have one of the non-seminomatous germ cell tumour types which have slightly different treatment options and protocols to a pure seminoma which tends to be more common in men over about 30 years old.

              It's difficult I know, but try to relax, get the op done and concentrate on recovering from that. Your path results will take maybe 10 days to come through and there is little point worrying about them.

              Good luck for tomorrow.

              Comment


              • #8
                Ah very small indeed! Okay, ill look into critical illness but doubt I have it, but thanks for the heads up.

                No idea about the CT tbh, i'll find out tomorrow, hopefully it's more or less clear but we shall see.

                Yh they told me it will take about a week after it's out to get any results so i'll just have to relax until then. Hopefully if the CT scan is clear then I will be able to completely relax till I find out.

                Out of interest, if I do switch to private after my operation, will the NHS still diagnose my testicle and give me the results? Or will it somehow get transferred over to the private side?

                Also, how was the recovery from the operation for you guys? Could you walk a bit within a few days?

                Cheers!
                24 year old diagnosed 6/11/16
                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                Pre/o CT Clear
                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                Post-op CT with one enlarged lymph node - 1.5x1cm
                Borderline stage 2B/3B
                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                CT and markers clear - in remission - 28/2/16

                Comment


                • #9
                  Can't join in the Whips' conversation, I was done "up North" at The Christie. AFAIAA your (surgical / medical) records are transferred between the various parties. As part of my "proof of illness" (sic) for the insurance, I had to get a copy from my GP, and that had all the NHS and private correspondence in it. I don't think transferring should be a problem. Not sure about the treatment process (because all mine was private), but pretty much everything (Onc appointments, bloods, x-rays, chemo, ... CT scans) all ran to clockwork. From what I recall the only time one of my appointments was late, was the appointment when I was told I'd had my relapse!

                  As for recovery, everyone is different. But whilst it is a significant piece of surgery (for you!) the operation really is a minor on - it isn't deep and doesn't go through the muscle wall. With my first, I am pretty sure I was outside shovelling snow from the drive within a few days. I remember this, because my GP (who lived down the street) was driving home, saw me and told me off for over doing it!

                  Apart from the obvious, you should be fine!

                  Jan 2009: RHS (Seminoma) & RT
                  Mar 2010: LHS (Embryonal Carcinoma)
                  Sep 2010: Relapse & 3 x BEP
                  Mar 2015: Five years "nut free"
                  http://doublezeroami.blogspot.com

                  Comment


                  • #10
                    You will be under a urologist at present for the op. As soon as it is confirmed as cancer then you should be referred to an oncologist with experience of TC (that bit is important as some oncologists specialist in certain cancers). You may be seeing both for a while, until the urologist is happy with your recovery from surgery, but within a month or so you will just be under the oncologist who will manage any further treatment and your follow up schedule etc.

                    Yes, the NHS will still diagnose your results as they have to report all that stuff back to your GP. I would expect the urologist to give you the basic results at a follow up although he may not know enough to tell you more than the basics so don't take any comments about treatment as gospel until you see the oncologist. The urologist should arrange a referral to the oncologist for you so it's at that point that you can talk about going private. I would ask for recommendations from them and possibly your GP as to who you might see. Also check info on BUPA website and private hospital websites to get a feel for which oncologist you want to see. Don't be afraid to ask questions to check suitability. You will probably be seeing them for five or ten years.

                    Recovery was ok. I was walking gingerly within 24 hours and walking much better within a few days. Loose clothes that didn't irritate the incision were a must!

                    Comment


                    • #11
                      Thanks guys.

                      Just an update, had my operation and it went fine. Was very painful straight afterwards and the first 2-3 days were painful but now i'm moving much more freely which is good.

                      Urologist said in the morning of my op that my CT scans came back clear which was a relief, and that he thinks that the operation could be enough on it's own, but i'll have a follow up appointment to discuss results/if any other treatment is required. He mentioned what he thought the tumour was based off my tumour markers/other bits, but I can't remember what he said exactly.

                      Got my sperm banking on monday, and potentially my results tomorrow but they have to confirm tomorrow morning. (I respect the NHS, but this Whipps is awful when it comes to phone conversations.. it took me 1 hour to get through to the relevant person, and then they said the system was down and i'll have to ring them back tomorrow..)

                      But.. touch wood I won't have any further treatment for now but we will see tomorrow maybe.
                      24 year old diagnosed 6/11/16
                      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                      Pre/o CT Clear
                      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                      Post-op CT with one enlarged lymph node - 1.5x1cm
                      Borderline stage 2B/3B
                      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                      CT and markers clear - in remission - 28/2/16

                      Comment


                      • #12
                        Good to hear you are recovering and things are pointing to you having caught this early. The chances are you may be a good candidate for surveillance. Make sure you get to see an oncologist as although the urologist will have an idea on likely further treatment needs, they aren't a specialist in cancer.

                        When you get your results, the things you want to keep an ear out for are the type(s) of cancer cells identified (seminoma, non-seminoma, yolk sac, embyonal etc)., levels of blood markers post operation, tumour dimensions, presence of any lymphatic invasion, vascular invasion and/or rete testis invasion. All of that lot can help in giving you the info you need on possible treatment options going forward.

                        Comment


                        • #13
                          Originally posted by MarkOne View Post
                          Good to hear you are recovering and things are pointing to you having caught this early. The chances are you may be a good candidate for surveillance. Make sure you get to see an oncologist as although the urologist will have an idea on likely further treatment needs, they aren't a specialist in cancer.

                          When you get your results, the things you want to keep an ear out for are the type(s) of cancer cells identified (seminoma, non-seminoma, yolk sac, embyonal etc)., levels of blood markers post operation, tumour dimensions, presence of any lymphatic invasion, vascular invasion and/or rete testis invasion. All of that lot can help in giving you the info you need on possible treatment options going forward.
                          Yh the urologist mentioned speaking to the oncologist. I'll ask those questions, thanks!

                          I do feel like i've gained a lot of weight, it's probably just because i've done 0 exersise in a week, whereas i'm used to doing sports 3 times a week and walking a lot normally. Hopefully I can go for walks next week more to get back to fitness. My other question is with a prosthetic. The doctor mentioned it just before my operation and said they can put it in at the time, but they don't recommend it, or you can get one put in at a later date.

                          It would make sense for me to do it soonish if I am going to do it, I just haven't decide if I should or not yet really. Any tips/suggestions by any chance?

                          Thanks again!
                          24 year old diagnosed 6/11/16
                          Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                          Pre/o CT Clear
                          Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                          Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                          Post-op CT with one enlarged lymph node - 1.5x1cm
                          Borderline stage 2B/3B
                          BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                          CT and markers clear - in remission - 28/2/16

                          Comment


                          • #14
                            It is a personal thing. I didn't get a prosthetic put in. I had no worries about what my wife would say and have never been particularly body conscious. I do find it ta lot more comfortable with just one, none of those uncomfortable knocking together moments. If I look hard, it hangs slightly lopsided but apart from that you would probably be hard-pressed to tell something is missing.

                            Comment


                            • #15
                              Hi Nish115.

                              I'm a little over 3 weeks following my right IO. First 2 weeks or so were pretty painful. Easing off now. Definitely pay attention to the pathology information.

                              I've elected for a session of Carboplatin in my circumstances.

                              I opted for a prosthetic testicle. Looks ok. I guess it's too early to say if it's the right decision or not. Time will tell! I suspect there may be plus points & negatives. If you opt for one then I guess it could be removed at some point in the future.

                              i just thought I'd get it done whilst they were in there anyway. The surgeon didn't suggest there was anything wrong with this approach.

                              Hope your follow up goes well.

                              Comment

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