Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
Hi GuysSo, a couple of days ago I've posted this https://community.macmillan.org.uk/cancer_types/testicular-cancer/f/testicular-cancer-forum/163114/pain-on-my-tc-side---backpain-ib-syndrome-or-lymph-nodes?Page=0#1228106Since then my pain has not subsided, and if anything it became worse on my lower back, more on my left side but not only. It doesn't get worse with movement, and it's annoying when I'm sitting down and also when I'm sleeping - it's not waking me up, but if I do I can feel it. Today I've received the letter from the Oncologist that visited me at the beginning of June. He's not my usual oncologist but part of the team. At the visit he said that markers were ok, and my examination went well. I didn't have any pain.Nevertheless today I've received a copy of his letter to my GP and he reported "His tumor markers from 3rd June have been reported and all within normal ranges (LDH 294, AFP 2.6, HCG <1.0 IU/L)"I checked and 294 is all but a normal value!!! How is it possible that they didn't pick up on it? A typo? Or just because I wasn't feeling any pain he dismissed the value? I tried to contact the oncology department, but nurses are all working part-time (things that makes me very angry!) and nobody picked up on my voicemail or email.Don't know what think, but I'm scared it can be a recurrence (-my last TC was Feb).How can they be so superficial sometimes?! Well, this is probably just a rant, as I guess I have to wait for the oncologist to come back to me. The problem is though that I have to leave the country, for good, and if I do a CT scan here I cannot take it to the doctor in Spain where I'm moving, last time I've requested a copy it took 3 months to get one! It would be a huge mess!Arrg!M.
Some perfect levels there for bHCG and AFp, that's great.
The LDH is athe top range of nromal, not much more than that. Different labs/institutions have different reference levels, and not uncommon to see referernce levels of 222..
In treating TC marker levels are said to be normal if LDH < 1.5xreference if the other markers are normal too. On many scales that would mean that any level within say 333 is just about normal (but at the top end of normal). This is likely to the be reason for the oncologists comment - its not a concern given the other information they have.. [EDIT: just checking this as the wording in the guide to staging I have is a little ambiguous]
LDH can be raised through many things other than tumours - injury, heavy drinking, infections (e.g. in cysts causing pain). This is perhaps one time when google gives information, but having that information in context with your own situation is what counts.
If my LDH were at the top end of normal, and everything else was fine I'd maybe feel a little anxious, but its not enough to lose sleep over.
Thank you Greg, as usual.I understand, though what I find a bit nidicolous is that they didn't mention that to me at my appointment, but let me find out a month later with a letter. At least I would have had the chance to ask him.I hope my back pain is not related, and that it's jut my anxious head putting all together.Also,I hope the specialist nurse will come back to me soon, it's so hard when you don't have anyone to communicate with.Luckily we have this forum, and people like you Greg!I'll keep you posted
Yes, some oncologists do this day in day out, and forget that for us its the one and only time and we're scared. On top of this, they probably have many other patients with different types of cancer, who they are more worried about, as those patients don't have the 98%+ survival rate we do, perhaps the total opposite. I can imagine in their heads they look at our TC results and say 'fine' and then worry about the next patient. It must be a hard job to do every day and remain sensitive.
Of course, none of that helps you! - and so I hope the guys and gals here and especially Sue can fill that gap.
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