Just diagnosed with Seminoma

[Pinstryped]

That is exactly how I understood it which oddly puts me at ease lol

I had an MRI today which shows the tumor larger than the CT scan showed. Luckily it doesn’t show anything growing into the vertebrae or spinal cord. Tomorrow morning I’m talking to the surgeon to see about having it removed.

[Mike]

From what I remember of the TRISST Trial the MRi can show a bit larger area of cancer compared to the CT https://pubmed.ncbi.nlm.nih.gov/35298280/ so who knows. Keep us posted on the surgical decisions.

Mike

[Pinstryped]

I figured the MRI might show a bigger tumor as the picture is a lot clearer than the CT scan.

Surgery is scheduled for this Friday, April 7th with a thoracic surgeon. She said she will begin by deflating my right lung and going in through my rib cage on the right with a camera to see if she can do this laparoscopically. If she doesn’t feel comfortable doing it that way, she will switch to a more open surgery with a larger incision. I will be kept overnight for observation to make sure my lung goes back to normal after, and to remove a tube that will be inserted to drain any fluid buildup in the lung. I’m oddly excited to have this surgery and hopeful that it’s the last I’ll need for a long while.

[Mike]

It is rare for TC to skip the abdomen and go to the lung but not impossible and better to know for certain with a tissue sample then treat inappropriately, I suppose. All the best on the biopsy.

Mike

[Pinstryped]

Well, had the surgery on 4/7 and ended up staying in for two nights. The surgeon was able to keep things laparoscopically while also removing the entire tumor. Just got pathology back today and it turns out it was Metastatic Seminoma.

As of right now I’m just waiting for the follow up with the surgeon on the 17th and then I suppose I’ll hear back from the oncologist soon as to what the next steps are. I’m in quite a bit of pain but I am keeping up with the pain medication they gave me and it at least takes the worst of it away.

[Mike]

I'm glad to hear that surgery went well. With this being a more unique situation, I am not sure how they will want to proceed, either with chemotherapy or a wait and see approach. Definitely keep us posted.

As far as the pain meds, if they are narcotics, be careful of constipations. A stool softener like docusate sodium may help.

Mike

[Pinstryped]

Thanks for the info!

The surgeon started me on stool softener before surgery and I’ve been on them since. They gave me Oxycodone 5mg and Gabapentin 300mg. I’ve been cutting back on the Oxy because they scare me and I don’t want to become dependent but been taking the Gabapentin as prescribed because the nerve pain is pretty intense.

I emailed Dr. Einhorn with the findings. He said it’s interesting that is went straight to T8-T10 instead of the normal path but Seminoma can do weird things. I do wish I was closer to Indiana…he seems interested and offered to get me in touch with the office to schedule an appointment there but it’s a few states away.

He did say that he can’t make a recommendation without actually seeing me in his office but, as long as everything was clear, he would probably suggest either 2 rounds of BEP.

[Mike]

I'm glad to hear that you reached out to Dr. Einhorn and let us know what they decide from here. It certainly is interesting and as Dr. Einhorn mentioned a bit unusual. How lucky right? haha

Mike

[Pinstryped]

I discussed everything with my oncologist on Wednesday and we decided to proceed with chemo. She feels we should do 3 rounds of BEP. I told her that I had been talking with Dr. Einhorn and she said she knows him and ran things by him to make sure she was getting the right treatment plan worked out. That made me feel so much better about everything!

I’ll be getting a port installed on 4/25 (still kinda anxious about that)

And I will begin treatments on 5/8. My boss pushed me to use short term disability which gives me three months off. Thinking about it, I’m glad he did. I don’t want to be working and worrying about chemo. This way I can just focus on getting through it and feeling better.

[Mike]

So glad to hear that your doctor reached out to Dr. Einhorn as well. Chemo isn't easy by any means but having a plan that you can focus on I think helps a bit as the unknown next steps can be scary on their own.

Keep us posted and all the best on your port placement.

Mike

[Davepet]

Everyone is different, but chemo knocked me for a loop. No way I could have worked, so probably best to not have to worry about that.

[Pinstryped]

Mike: yeah, I feel much better knowing she consulted him. Port placement went well. Everything is healed up and I’ve been cleared for chemo to start on the 8th.

Davepet: from the stories I’ve heard there’s no way I would be able to work. I have the option of working from home but me and nausea don’t go well together so I’m really not looking forward to this at all!

[Mike]

Hopefully, the first 2 days of chemo are going well and keep us posted on how things go.

Mike

[Pinstryped]

Things went great until Thursday last week. That’s when I really started feeling the effects of the chemo. The ringing in my ears, nausea, weakness etc.

The weekend was rough. My wife was basically forcing me to eat and drink as much as she could but I was just trying to sleep through it. Monday came and I was so sick I couldn’t make it to my bleo infusion.

Monday evening I went to the bathroom. I stood up and fainted, landing head first in the bathtub. My wife pulled me out and got me to the hospital. They discovered I had a blood clot in my left lung in the main artery, fluid on my right lung, and orthostatic hypotension. Those three things caused the fainting.

So after a two night hospital stay I’m back home. While there they drained 650mL from my right lung, and put me on blood thinners (Eliquis 5mg two times a day) and a medication to help combat the orthostatic hypotension (Midodrine 5mg two times a day)

I’m honestly scared to go Monday for my bleo round and REALLY scared to go for my next full week of chemo. I’m worried I’m just going to get right back into that same spot. And the ringing in my ears is driving me insane.

I’ll get through it. I know I will. I’m just scared.

[SamanthaS]

Dear Pinstryped: I am so sorry that you are going through so much. I cannot offer any expert advice, so I just wanted to say that hopefully things will get better soon My son also developed a blood clot in his lungs due to chemo and took blood thinners, which eventually resolved it. He could not possibly have worked during chemo (3XBEP). I wish you good luck!