New scan results

[mstlyn]

Today was Anthonys oncologist appointment and I am not sure what I want to think, but I'm scared and need to know what you all think. This is the report, word for word.

Findings: There is prominence of the retroalveolar tissues bilaterally.

Lungs are clear. There is no mediastinal or hilar lymphadenopathy visualized. There is no focal consolidation, pleural effusion, or pheumothorax.

There is a 4.7 x 2.7 hypoattenuating lesion visualized within the left periaortic retroperitoneal space just superior to the left renal vein. There are multiple bilateral 1 MM Renal calculi. There is no hydronephrosis or hydroureter visualized. There is no free fluid, air or bowel obstruction. The osseous structures appear intact.

Impression:
1. soft tissue lesion most likely an enlarged lymph node in the left paraaortic space just superior to the left renal vein is concerning for metastatic disease of the patient with a history of testicular cancer.

2. Gynecomastia which may be seen with a patient with a seminomatous or non-seminomatious lesion producing high levels of beta hcg.
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the oncologist says he thinks there is teratoma and they want him to have surgery. Im not sure why the doctor thinks there is teratoma, so I asked him.. wouldnt the original path report have indicated that?

He said that there could have been embryonal and yolk sac in the testical and teratoma up in the (he motioned with his hand) abdominal area.

I asked him if there is active cancer and he said they dont know, and cant know that until it is removed and biopsied, but he said that its "probably" gone. (the cancer)

New markers: hcg 0 and afp 3.6 LDH 213

I was scared to ask him if my sons prognosis has changed now

Can anyone tell me why he has this mass, and what it means? has anthonys prognosis changed?

Tammy

[Scott]

It does sound as though RPLND surgery is required, but there's every reason to expect Anthony to come through fine.

As this TCRC page says, "a number of people may need this surgery [RPLND] after chemotherapy. The chemo may kill the cancer, but one of the things left behind, teratoma, must be removed. Teratoma is a benign tumor with a tendency to grow or degenerate back into another cancer. If the stuff left after chemo is large enough (perhaps more than 1-2cm), it is likely that the doctors will want to remove it. In a few cases it is possible that the chemo did not completely kill all the cancer. In these cases, removing the lymph nodes might also be therapeutic and cure the cancer."

[Russell's Mom]

teratoma

If there are residual masses, they can be...residual cancer, scar tissue or teratoma. Teratoma by themselves are harmless, but carry the possiblity of changing into cancer...even cancers other than TC. There is no real way to know just what tissue is present from the radiology studies. There is always much confusion about if to do surgery or wait an watch. Decisions are made by looking at the history of the person and treatment etc. The goal is to get anything that can possibly cause a problem out of there. (Russell still has a lung lesion...they couldn't remove it when he had his RPLND because of the Bleomycin toxicity/lung concerns. )
Keep reading and learning and eventually the confuied picture will start to make sense. At first I didn't understand. By the time decsions were made, I could hold onto the ideas that the doctors were putting in front of us. It was then clear which direction to go. A suggestion....be careful not to spend too much time in worry mode....I know it can sweep you off your feet in a moment. Put your strong foot forward...save your energy. This will make sense to you soon. Take care, Russell's Mom, Sharon
PS Was just thinking that I could use one yellow shoe to remind me to always choose the strongest next step.!!!!! Might be fun for LS Day!

[Already Bald]

Tammy,
It looks like Anthony is a canidate for RPLND. I'm sure you're thinking "When will this ever stop??" With the right surgeon, he will be fine. He may want to bank sperm. I remember Sheinfeld saying that this surgery can be a little more challanging post chemo- or something like that, however certainly doable.
Sorry that you are dealing with this.
Joe

[Margaret]

Tammy, we had a similar report and they advised a bi-lateral RPLND. Once the masses were removed, along with the lymph nodes, they found them to be non-cancerous...but they would not have know with out removing them. I would say your next step would be the RPLND. My husband did very well with it and I would say your son will do great too. Hugs, I bet it has been a tough day for you.

Margaret

[Fed]

Hey Tammy,

I'll try to explain my take on the data you presented as logically as I can. If I'm reading the scan report correctly, there is some good news: "the lungs are clear", which means the chemo worked (Anthony previously presented with two lung nodules, if I remember correctly). The renal calculi are essentially tiny kidney stones. 1 mm is really small, and I'm surprised the CT scan picked those up. Since we know that the chemo worked because the lung nodules are gone, it is very likely, as others have said, that the remaining node has teratoma. Due to its "benign" character (in that it behaves like the average human cell as far as cell division is concern), chemo won't do much to it, hence the likely need for an RPLND.

Despite this, the RPLND is curative in the vast majority of cases, which leads me to think that although the fight is not over, Anthony will succeed. I can imagine how overwhelmed you must feel right now, but Sharon is right: you and Anthony need to stay focused. You have come a long way, and you have done a superb job being Anthony's caretaker. Keep up with the push, and let us know how all goes.

[Apache]

banking sperm should be cautioned this close to the finish of chemo Rx due to either sterility and/or defective sperm cause by chemo. see what the oncologist/urologist say.

[mstlyn]

All of you are so wonderful, and I wanted to say thank you for your words of comfort and encouragement.
I just had Anthony sit down and read all of your posts, and he feels better now too.
He is concerned about not being able to have kids in the future.
He did bank twice
before he started his chemo.

I know that I feel better again after hearing from all of you. When the doctor told us about the mass, it felt like the rug had been pulled out from under our feet.

I was nervous about what the scans would show, but I kept telling myself that over 90% of cases would be cured with the chemo; so I guess I was thinking.. " Ok I am worried, but doctor is going to tell us that everything is clear"

I am still wondering if this changes his prognosis to any degree??

Maybe I should see the answer in the responses, but the question still lingers...

Thank you all so much ..

Tammy

[Margaret]

Tammy,

I felt so much like you. I thought on that last day of chemo we would get this BIG news that everything was clear. So we go in for our post chemo scan, we sit in the doctor's office, he pops up the scans and says 'well we see these two masses'. I felt like fainting. He starts talking about RPLND and retro-grade ejaculation and I felt like we were starting over again.

But that was not the case...but I had to go through it before I could feel better about it. The masses were left behind from the tumors getting smaller during chemo, but there was no way to know what those masses contained. All they could do was remove them....and take away the chance that they were something to be concerned about.

So off to Sloan-Kettering we went (and please let me save you the many phone calls, leg work, and questions-if you can get to this hospital and it is in your insurance, and you need an RPLND...this is a great place to go). He had the RPLND and those masses were nothing. Just old left over tissue that had no cancer in it. AND, our Dr. was able to do the Bi-lateral RPLND and my husband does NOT have retro-grade ejaculation.

You are 90% of the way there, and I feel a cure is right around the corner for your son...but these last steps are important so that they make sure they have gotten eveything.

Your son was able to bank sperm...which my husband was not able to do...which was a good idea and there is a chance, even with RPLND, that he will be able to have childern naturally.

You are nearing the end, I know it is hard, but God brought you this far, I know he is still standing right next to you.

Margaret

[Fed]

This thought didn't come to me until this morning. The nodes may also contain, instead of teratoma, necrotic tissue which is pretty much dead cells. This complements my post from last night. Regardless, I am fairly certain that any oncologist you ask will want those masses removed just to be on the safe side. Stay strong,

[matthias]

There is a common misconception embedded in your statement.

While the cure rate for TC is in the 90-95% range, this does not mean that first-line chemotherapy is 90-95% effective. In actuality, first-line chemotherapy is only about 70% curative.

Look at it this way: roughly 65% of all TC afflicts are cured by orchiectomy alone, of the remaining 35%, 7 in 10 are cured by first-line chemotherapy. This leaves about 10% of diagnosed patients with progressive disease after the initial chemotherapy. They go thru more treatment (RPLND, second-line chemo, HDC) which cures another half (5%) of these 10%.

All in all, 95% have been cured but not necessarily by first-line chemo alone.

Hope this makes sense.

[...]

I was nervous about what the scans would show, but I kept telling myself that over 90% of cases would be cured with the chemo; so I guess I was thinking.. " Ok I am worried, but doctor is going to tell us that everything is clear"

[...]

Tammy