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Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
I’ve not been on here in a little while but thought I would post to show you can get through your treatment. I was diagnosed with stage 3c non seminoma with a 16.5 cm mass, 19000 afp and 21000 hcg. I had a left ochiedectomy, then went on a brutal chemo regime of CBOP/BEP. Thankfully by the end of chemo my tumour markers had normalised and my mass has shrunk to 3.8cm. As it was non seminoma it was decided I would have a RPLND to remove the remaining mass. 4 months after chemo I had the procedure and luckily it was all necrotic tissue. So as it stands I’m 4 weeks clear of RPLND and I’ve got the all clear. I’m not getting to carried away because I’m now on surveillance and I don’t want to tempt fate! I’ve been left a lot weaker and have quite bad neuropathy but I’m alive and hopefully I can get back to where I was 9 months ago. I just wanted to share my experience to help people that are about too or are going through treatment, you can do it!
I have huge respect for you and what you've been through. So glad to hear the update and best wishes for the long term recovery!
It seems like along time ago since I reached out to this forum. Thanks again to you and everyone else that gave me advice and words of encouragement! I just wanted to share my story because no matter of the up and downs you do get through treatment and you still have good cure percentages at the end no matter what your original prognosis was.
So good to hear treatment finished and hope you can put it behind you. You have certainly gone through the mill and hope that is you on the mend
Great to hear your story Shaun. Stuff like this really helps all of us who are going through this or about to go through this.
Hope the recovery goes well.
Great to hear you are in the all clear, Shaun! I had nonseminoma mixture of teratoma, embryonal and seminoma. My story is a bit different but looks like simillar. I had only 1 swollen lymph node, which was not that big...about 3 cm in diameter. Had 4 cycles of BEP, lymph node not shrunk, it was even getting bigger- that made me scared as I had no idea what is going on. Same like you, about 4 and a half months after Chemotherapy I had the RPLND done, and it was just that one lymph node, only teratoma (mature) and since then I am all clear, thanks God! It's been one year and seven months now, and I am not having any scans even. Just blood tests and seeing oncologyst every 3-4 months. God is good! Wish everyone gets the all clear and share their experinces, this is encouraging newly diagnosed!
That’s great hear patso84 . You had it tough as well! Have you got any ongoing issues such as neuropathy?
Hi again! I've got a few issues like some pain in abdomen sometimes, and got that retrograde ejaculation complication after the RPLND. My veins are still not as they were before Chemo, being 2 years in less than 2 months since I finished with Chemo. Heart beat/pulse rate is around 85-100 ... I am slim but getting a tummy, which I don't like. But I find it different with different foods, so really depends what you eat and how much you eat. And sometimes that abdominal pain could be caused from food. I think anybody who have had some kind of treatment gets side effects that gets used with. We have the scars from the surgeries if not anything else... But at the end of the day we are alive and these things don't matter!
How are you feeling? Do you have any complaints?
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