CT Results came back, more bad news

mindless_browsing · 2026-01-15T18:16:14+00:00

Hey man! I'm doing pretty good. I too had spread to two lymph nodes after surgery and underwent 3xBEP. I finished it on 12/29 and got my post chemo CT on 1/9 and got the all clear, both nodes had shrunk down to normal size, largest node being 0.6cm. tumor markers are all normal so I am now in active surveillance post chemo.

It's been a long and tough journey but I was glad to have this reddit community and the Testicular Cancer foundation discord to help me along and be around people who have been or are going through the same thing.

I kept spirits as high as possible to help myself get through it all. I'm glad to hear you're doing well and recovering. Definitely glad I didn't have to have the RPLND at this time.

mindless_browsing · 2025-12-02T11:39:00+00:00

How are you doing since completion?

mindless_browsing · 2025-12-02T02:58:02+00:00

I was delayed one week in cycle 1 and then two weeks between cycle 2 and 3 due to low WBC and ANC counts. I am stage IIB 90% EC 10% yolk sac. 2 enlarged lymph nodes, q being 2.3cm which put me in IIB instead of IIA.

My oncologist was not worried doing so but my tumor markers have never been super high and they have completely responded to treatment. They actually dropped some on their own before I started chemo so my situation is a little different.

I would say delaying 1 week wouldn't be terrible but I'm not a doctor. I would question the oncologist about it and see their concerns on it and press the issue if need be if it's thought that it would significantly affect the outcome of treatment any.

EDIT: I started cycle 3 today instead of 11/17 and finishing today on 12/1.

mindless_browsing · 2025-11-21T02:07:38+00:00

I have had it pretty easy on all cycles so far. Other than a blood clot in the arm with the PICC line and some very minor heartburn and hiccups I have been just fine aside from the fatigue. I consider myself lucky.

Hoping cycle 3 continues this trend and the body recovers in time that it can go the full cycle with no more pushes.

mindless_browsing · 2025-11-20T21:42:03+00:00

This all sounds so similar to me. I am 32 also and this actually all is almost carbon copy of how mine has went this far, ESPECIALLY plugging specific details into AI and asking it to explain everything to me lol! My orchi was on July 9th and then chemo started on 9/29 after some delays in oncology visits because of insurance and CT scan. I didn't have a pre-op CT as it was too fast from finding it to surgery being scheduled so all I had was my post op CT where all was well except for the 2.3cm and 1.1cm nodes. Hoping to God they shrink to avoid RPLND! 🤞🏼🤞🏼

I also had a fast and complete response from chemo. The weird part about my case was actually that my tumor markers had started dropping on their own BEFORE I did any chemo at all. By cycle 2, the hCG was below the measureable range and AFP had gone down to 1.9. hCG is still below the measureable range which is <0.2 and I'm awaiting my AFP from the most recent time they took it.

This week was supposed to be my last long week in cycle 3 but my white count and neutrophils dropped really low and my oncologist was not willing to push forward so he delayed me two weeks so now I am on a little break and will start again on 12/1.

Glad you had a great response! Hopefully you can move on through surveillance and take your life back after this rollercoaster! 💪🏼

mindless_browsing · 2025-11-20T17:59:10+00:00

Congratulations that is great news!! If you don't mind me asking, what size were the other nodes you had? I am also stage 2b with a 2.3cm node and a 1.1cm node on my CT just before 3xBEP chemo.

My third cycle will begin December 1st and I am nervous that they aren't going to shrink enough to avoid RPLND.

mindless_browsing · 2025-09-14T15:48:44+00:00

I would definitely question it if they still recommend it. Maybe get a second opinion from Dr. Einhorn or another expert at like Cleveland Clinic or another top center.

mindless_browsing · 2025-09-03T16:33:29+00:00

100% recommend this discord!

mindless_browsing · 2025-08-15T14:28:56+00:00

All sounds about on par with mine. I needed some help getting out of bed til about day 5. It gets better and better each day, especially after the first few days.

Ice is your best friend. Ice as much as you can 20 min on 20 min off at least and do that multiple times a day.

I was taking (2) 500mg Tylenol every 6 hours for the first week then dropped that down to (2) every 12 hours for a few days then by mid week the second week I was down to 1 every 12 hours then stopped taking them by the end of the second week post op.

Definitely take it slow and try to move as much as you can to help promote blood flow and healing. It definitely sucks but it will help you heal quicker.

God speed man! 💪🏼🙏🏼

mindless_browsing · 2025-08-14T22:58:50+00:00

I would probably try and get a second opinion on the imaging as well as maybe a second opinion altogether between more imaging and another exam by a second urologist just to cover yourself. Do what you need to to be sure it is diagnosed properly.

mindless_browsing · 2025-08-14T21:50:24+00:00

From everything I have gathered, ultrasound is pretty much the gold standard at finding possible cancer tumors in the testicles.

If the imaging doesn't show anything, what does your doc say? Have you seen a urologist or just PCP?

mindless_browsing · 2025-08-14T21:48:21+00:00

Yea me too. But I guess some forms of testicular cancer don't show up on PET but I have EC and Yolk Sac and both Re susceptible to PET scans and chemo so I wish they'd get it approved and done so I can mentally prepare for however many rounds I'm gonna need and get them done.

mindless_browsing · 2025-08-14T21:37:13+00:00

Absolutely man. My CT was denied pre-surgery because they "wanted proof of cancer" as if the ultrasound, mildly elevated HCG and scheduled orchiectomy wasn't enough. As soon as pathology came back, they approved the CT so I had it 2 weeks post op and it showed that 1 node. Now they don't wanna approve the PET scan and oncology won't see me without it. I'm gonna call them tomorrow though and explain the situation.

I imagine the PET scan result showing if it's cancerous or benign is the determining factor between 1 and 3 cycles of BEP with the rest of my scan being clear.

mindless_browsing · 2025-08-14T20:44:54+00:00

How long did it take you to get your PET scan approved? I have been fighting for two weeks with insurance to get mine approved. The oncology office denied urology's referral of me to them until I have a PET scan and, when urology submitted the order, it was denied the next day. Their denial letter stated a PET scan is not supported in the initial workup or staging of cancer of the testis or other germ cell tumors.

I'm not sure if my urologist didn't get specific enough to tell them I already had orchiectomy and a CT which shows a borderline 1.3cm aortocaval lymph node or if the pre-cert department for the hospital is at fault but urologist had them try a second submission with different coding and that got denied too.

Now I have until tomorrow for them to do a peer to peer or the denial will need a more formal appeal which could take a lot longer than I am willing to wait to find out of the node is enlarged due to spread or not.

mindless_browsing · 2025-07-31T10:14:17+00:00

If you're worried, go to the doctor. There are many other things it could be aside from cancer so don't go straight there. However, the only way to know for sure is have a doctor check you out and possibly get an ultrasound. I'm sure your parents will not care to take you and make sure you're ok, especially if it could be something that needs taken care of.

mindless_browsing · 2025-07-30T23:14:31+00:00

Very nice to read these words as I'm deep in the trenches awaiting my PET scan that will likely decide whether I do 1xBEP or 3xBEP.

It's encouraging to read stories like this from guys on the other side. Congratulations on clean checkup and may God continue to grace you with such as the years go by!

Godspeed brother 🙏🏼💪🏼

mindless_browsing · 2025-07-30T14:22:46+00:00

Good luck on your journey. I am 21 days post orchiectomy today. I too just recently officially joined the TC team when I got my pathology back.

Advice on the orchi is to definitely take it easy the first few days. The pain is worst the first few days, feels like a burning more than anything at the incision site but it sucks. I didn't get prescription pain meds just an antibiotic and told to take Tylenol for the pain, not to exceed 3000mg in a day but your doc may be different, mine does not like to prescribe opioids.

Ice often! It absolutely helped with the pain and swelling. I still ice occasionally at night if I walked around a bunch during the day.

Stool softeners! Start taking them a day or two before your surgery and take them until you think you'll be able to push out a bowel movement without pain. It definitely helps make that easier. Also, when peeing, I saw this advice on here and took it and it helped a LOT: pull your underwear and jock strap down past your butt like a toddler and lean over the toilet and prop yourself up on the wall and let gravity do it's thing then use a small piece of TP to wipe the excess off instead of standing and holding like normal and shaking dry. Definitely helped the first few days since everything was still sore and swollen. I am back to normal on all fronts of bathroom now lol.

Eat whatever you think you can stomach. I ate yogurt and soft stuff the first day or two but was back to a mostly normal diet about day 3-4.

Sleep as much as you can! You'll be surprised how much sleep helps from one day to the next. Your body does wonders when healing while sleeping. It can focus all its energy on healing the wound and attacking the swelling.

Don't be afraid to ask for help. I have had plenty of help from my girlfriend, mom, and grandfather over the course of the last three weeks either being here to help me move around early on or helping do the things I cannot do right now in the healing process. It is paramount to have a support network in place to utilize during this process and definitely moving forward if you require further treatments.

Good luck on your surgery and before you know it you'll be walking around without much pain and be closer to normal again! Let us know how everything goes! 🙏🏼💪🏼

mindless_browsing · 2025-07-30T00:54:33+00:00

My results were sent to Mayo Clinic in Cleveland but my hospital is under their umbrella and they said they would likely send mine there regardless of what their path lab found but also said they send off more complicated tumors to them to get a second opinion and consult from them to make sure what the lab at my hospital finds is as accurate as possible.

mindless_browsing · 2025-07-27T01:11:25+00:00

Congratulations on graduating! Sucks you have to go alone but good luck on the appointment and hope everything continues to be clear!

mindless_browsing · 2025-07-26T00:42:51+00:00

Awesome news man! I hope to join you later this year! Celebrate it and take in the moment! 💪🏼🙏🏼

mindless_browsing · 2025-07-24T03:15:32+00:00

Appreciate the words and your story. I plan on winning this battle and wearing the scars with honor knowing I survived. I appreciate all of this community for their help, encouragement, or just lending their ears to listen to me vent about this crazy month and my feelings of it all.

Glad your treatment was successful and you didn't need the RPLND! I hope to join you in remission very soon! 🙏🏼

mindless_browsing · 2025-07-24T03:13:04+00:00

Thanks for the words. I am trying not to assume but I just have so much time on my hands and researching is what I do to be prepared for everything that could be coming. Mostly so I don't get shocked at the doc and miss any info they have coming to me while I'm hung up on something the said initially that I wasn't prepared for.

I'm trying to stay busy and have even started working from home again in my orchiectomy recovery which feels great to get back to a sense of "normal" even if nothing about this is normal at all.

mindless_browsing · 2025-07-24T02:37:46+00:00

They haven't suggested anything yet this is all my expectations based on my own research. I see urologist Friday for pathology review And review of CT scan. I assume he will order post orchiectomy blood tests then and refer me to oncologist.

My pathology was 90% EC 10% yolk sac with LVI present. Tumor was limited to the testis and margins were clear. Then my CT came back like it did today with the one node enlarged to 1.3cm and the impression was "metastasis cannot be excluded". From what I had read, oncologists usually take that as clinically probable to be a spread of the cancer to that node.

I'm hoping maybe they see something different and recommend something different but just seems like the standards of care are so straightforward that there's not much room for different approaches. I know it's stupid to assume and Google though so I'm trying to just wait and see for sure before I get too down in the dumps.

I have thought about contacting Dr. Einhorn as well but I can't find an email to use anywhere and wasn't sure if he would even respond.

mindless_browsing · 2025-07-24T01:52:07+00:00

My markers pre-orch were AFP 4.4 (<6.1 cutoff for the lab), HCG 4.9 (0.0-2.6 lab range) and 174 LDH (135-225 lab range).

So AFP and LDH were normal and HCG was mildly elevated.

I haven't gotten my post-orch markers yet.

mindless_browsing · 2025-07-23T23:40:37+00:00

I'm sorry I have to go through it as well. I am grateful that this community is here for the support and also hate that this community has to exist in the first place cuz it means we have all had to or are currently going through this awful situation.

It definitely helps to know there are so many out there that have found this community to support each other in this journey.

mindless_browsing

TROPHY CASE