Heavy Feeling after RPLND

[J0N3]

Hi all, I'm new here and I am looking for advice or maybe to see if someone has experienced something similar. I guess I should give a brief history, I was diagnosed with testicular cancer last year, it was non-seminoma and a mixed germ cell tumor 95% embryonal, 5% yok sac and choriocarcinoma. I had the initial orchidectomy on the 28th of May last year to remove the affected left testicle however there were signs of lymphovascular invasion and further CT scans revealed spread to the retroperitoneum. They started 4XBEP on me on June 28th last year, ironically my birthday as well and my last session was on the 13th of September. The 13th of September felt like such an exciting day but further scans revealed I my mass had only shrunk by 4mm, me and my mum read the report wrong and got excited because we thought it shrunk to 4mm so that was a bummer. This then lead to us having to prepare for an RPLD which was then done on the 22nd of February. Its now September and for the most part I was getting back into a routine and feeling much better about myself. However these past two weeks I have been feeling a heaviness and dull pain under my stomache and this pain also hurts my back. It reminds me of the pain I felt when I was initially diagnosed with cancer of course that pain was worse it would make me cry if I didn't take advil, this one just feels numb and uncomfortable but it gets bad if I lift heavy stuff or walk around too much. It sucks because I had gotten a routine going and was exercising on a daily basis and was preparing to get back out to work by the end of the year. Now I just lie down alot and I feel a bit tired. I don't know what is causing this constant pain, I just keep on hoping that it would go away but it doesn't. Saw the doctors but they said they can't tell me anything without scan results, I did a CT in July of the is year and everytime I go to the hospital they tell me the report isn't ready. The doctors felt where I said was hurting but didn't feel any mass, she prescribed a muscle relaxer which doesn't help and sent me for an ultrasound in hopes that I can get those results before the CT but the ultrasound results should be ready in November, so I feel like its really far away. I just want to know if anyone ever experienced this kind of pain, a dull aching pain in the abdomen which also hurts my back as well. I really don't want this to be cancer related. Thanks if you have taken the time to read this.

[Mike]

I have not had a RPLND to be able to relate the pains with you but I will say that waiting that long for a radiologist to interpret a CT scan is appalling. Wishing that you find some resolve soon.

Mike

[SamanthaS]

I am so sorry to hear about your pain. I agree with Mike that waiting that long for the CT-scan result is unacceptable. I do hope that you can somehow get the results soon in order to clear your fear about the pain you have, and that your pain will lesson soon. My son has a very similar case like yours, with the same kind of non-seminoma cells, almost exactly the same percentages too, and it spread to one lymph node. We are all anxiously waiting for the first post-chemo CT scan result at the moment. Wishing you the best!

[J0N3]

Hey Sam and Mike, I know this is a bit late but I'd like to thank you both for your responses. I actually got my results and the pain did go away for a while but its come back and its been here for 2 months now, it kind of sucks. I hope your son is recovering and that his scans have been favorable. Apologies for the late reply, life just got in the way between trying to restart my career, pain, getting COVID, these past few months have been a blur.

[Mike]

Thanks for following up and never a worry when life gets in the way. That is a good thing really. Wish you had found some resolve for your pain though.

Mike

[SamanthaS]

Hey Sam and Mike, I know this is a bit late but I'd like to thank you both for your responses. I actually got my results and the pain did go away for a while but its come back and its been here for 2 months now, it kind of sucks. I hope your son is recovering and that his scans have been favorable. Apologies for the late reply, life just got in the way between trying to restart my career, pain, getting COVID, these past few months have been a blur.

Dear Jon: Thank you for the follow-up and I am sorry about the persistent pain. I wonder what the cause of the pain is and whether it is possible to get to the bottom of it, given that it did go away for a while? Would you be able to see a different urologist? I feel that a second opinion is very important and perhaps getting other specialists to take a look at your case can be helpful as well. My son finished his chemo in late September 2022, almost the same time as you, and did have one lymph node that was enlarged and RPLND was indicated. He was first advised to go through the RPLND by his urologist and also by another famous urologist. However, we went to a third urologist, Dr. Litwin, at UCLA, who advised us to wait, to see if the lymph node might shrink as the size was marginally larger than normal at 12mm. It did not shrink for many months, but in the latest scan of early May 2023, it shrank to the normal size, indicating that it is only necrosis, and Dr. Litwin declared my son in remission. So if we did not go for the third opinion, my son would not have escaped the surgery. Do whatever it takes with the medical system to get them to give you the care you deserve. I wish you good luck in getting to the bottom of the pain and please keep me posted. Warmly, Sam

[Mike]

Great to hear that your son saw Dr. Litwin. He is great and a testicular cancer survivor himself.

Mike